Chronic Pelvic Pain

Fainting - Yikes!

2009-08-24T16:38:00.000-07:00

Despite the fact that I spend most of my time laid up, things are never boring around here. Husband started business school yesterday and with it came a little orientation/reception for the spouses at the business school. Let's just say I made quite the impression. Attempting to be a supportive spouse, I put on a dress and some cute shoes and went to the reception, despite being in a lot of pain. I mingled for about an hour and a half, was in the middle of a conversation and BAM, fainted. One minute I'm talking, the next minute I'm on the floor, laying in a puddle of my dropped glass of wine, with the ENTIRE party standing around me. Humiliating. After I came to and said "can everyone stop staring at me," I was laying on the floor and was asked several times "are you pregnant?" - I'm like "no, definitely not" and this guy at the party copped an attitude and was like "well, how do you KNOW you're not pregnant?" At that point I just said I gotta get up. Because I hit my head really hard on the floor, they called the school EMT's who wanted me to go to the ER and get checked out. Remembering the Natasha Richardson ski story, I figured better safe than sorry. So, Husband had to miss the Orientation after-party to sit with me in the ER next to two yelling crack addicts (one of whom was pregnant). All in all, I'd say a successful evening. Played the part of supportive spouse - check. Killer headache; no brain injury - check. Free ambulance ride - check. I think I just got myself out of all future school events!

I don't think Husband is even phased anymore. I can't say he looked totally surprised or particularly freaked out when he showed up to get me post-faint. Married 10 months and that was already our second trip to the ER. The last ER visit was post-Laparoscopy/Appendectomy when I had a 101.5 fever and was sent to the ER. Hopefully no more hospital visits anytime soon. Still don't know why I fainted but I'm guessing it was just the combination of a sort of hot room and being in a lot of pain.

Back in the Real World

2009-08-20T10:53:00.001-07:00

Returned from a nice trip to the beach to find a big stack of denial letters from the insurance company and other health insurance bills. Lovely. But, I had an equally large stack of wonderful cards and notes - so thank you!

It took me about a month and a half to get an appointment with a certain "pelvic pain specialist" in NYC -- since I'm pursuing things with Hopkins and have an appointment there next week I almost cancelled but I decided to go incase things didn't work out with Hopkins. The doctor was young and seemed knowledgeable but was one of the more arrogant I've seen. He actually laughed about choices my other doctors and I have made. I'm glad he thinks it's comical and absurd that I had numerous doctors telling me to go on Lupron. That was annoying -- particularly since he didn't even look at their records.

While taking my history he clearly didn't think I had a nerve problem and then after examining me he back peddled and came to the conclusion that I may have a problem with a distal branch of the pudendal nerve. I couldn't believe it - I thought I was past hearing "pudendal nerve problem". Apparently not. He wants to put me on Elavil. Originally he wanted to try me on Lyrica (again) but I had bad side effects last time so he decided on something else. I may try it since anti-depressants are the one class of drugs I haven't tried and from what I've read, a lot of people with nerve problems have luck with Elavil (aka Amitriptyline).

He also wants to do a nerve block next week and even mentioned down the road a spinal cord stimulator. This is essentially an implanted pain device in your spine. Commonly used for nerve pain. NOT something I'm interested in. When I asked if you could use that while pregnant he was laughing and saying how great it would be during labor. Yeah, keep on laughing buddy. Am I laughing? No. So, the verdict is out on this guy.

Hopefully things will go well with Hopkins and I can make some progress there before going down a path with this guy. It's just frustrating because at the Mayo Clinic they laughed at the prospect that I could have a pudendal nerve problem. A few days before that, a top pudendal specialist, Dr. Antolak, gave me a pudendal diagnosis. My physical therapist thinks it's genitofemoral/ilioinguinal. Who knows. Can someone just figure me out already?

On the Beach

2009-08-13T14:35:00.000-07:00

Husband, Dog and I packed up and got out of the City for the week and headed to Long Island. After 6 years and many travels, this was Dog's first trip to the beach. She was very zen about the whole thing. Played in the ocean, then sat on the beach like a person and just watched the waves crashing. I half expected her to bust out some yoga moves or meditation any minute. After my 2 recent pre-melanomas, I stayed under the umbrella with my 70 SPF on but Dog soaked up some rays for me. I had to skip physical therapy this week but I don't think it will do too much harm.

Husband just left his job to go back to graduate school so now we're one unemployed and one disabled. Should make for an interesting combination going forward. Ramen noodle recipes anyone? When we rented the house we're staying in, we failed to mention that part and just said we were a lawyer and my husband's previous occupation. Sounded a lot more impressive than an unemployed guy and a chick on disability.

Pain Changes Things

2009-08-11T13:25:00.000-07:00

I'm back from a small blogging break. It's been a frustrating time. I've made the choice of Hopkins for my care and that has meant weeks and weeks of waiting. Members of my family came for a visit and thought cleaning, buying some new furniture would change something for me. It didn't. They want to blame my frustration and anger on "drug withdrawal" when in reality, I'm just frustrated and angry. Period. But, it's easier to blame "drug withdrawal" than accept and discuss that the family member you know and love has been changed by months of pain, frustration, isolation and having to go against most doctors to get the help they need. I've had to take charge of something that I'm not qualified to take charge of. Constant pain is maddening. Dealing with these doctors, almost equally as maddening.

My decision to go off all the drugs -- turned out to be a good one despite the fact that my pain doctor (number 2) told me this would put me in more pain, I would be doing harm to myself, and that it was completely against his medical advice. As I sat in his office a patient came in to get a refill of her Methadone prescription. She was so doped up I'm surprised she could even find the office. She even waved to us like a drunk person. That's how much Methadone I would need to be out of pain. And I do believe Methadone would take me out of pain. I'd never get a diagnosis though and I certainly wouldn't be "functioning" in any real sense of the word. It's frustrating to know there's something out there that could take me out of pain but at this point I have to keep enduring if I want to get any answers. Even at the starter dosages I was falling asleep in the middle of conversations with my Husband. I am not a doctor; how are people supposed to make decisions like these? Even my Husband tells me I need to trust my doctors. But I can't do that. Particularly when I seem to be doing better distrusting what they say. All the drugs that I was on were only giving me the negative effects -- constipation etc. which I think made my pain WORSE-- and weren't helping one single bit with my original pain.

I'm waiting for my return visit to Hopkins which will be just another one hour consult before I can have even my first diagnostic nerve block there. It will likely be a month wait after that consult. People die waiting for doctors, procedures, organs. My family seems to think I should get moved up in the line just because I'm in pain. I may be in pain but I'm not dying. I'm certainly not going to get moved up in the line. Dying people don't get moved up in line. I called, pled my case, and was told "go back on your drugs" if you can't wait. Nice.

My Last Rant...

2009-07-28T00:04:00.001-07:00

Probably induced by drug withdrawal. I need to stop ranting and seriously relax.

Too Many Cooks In the Kitchen

2009-07-27T13:15:00.000-07:00

My new pain doctor has me absolutely furious. I haven't really liked the man since he told me I was "doctor shopping" (in my case I like to call that looking for someone that can help) but I guess I got what I wanted -- someone to help diagnose. The first pain doctor categorically refused to assist in diagnosing me and would only ramp me up on drugs so I eventually found someone who would assist in a diagnosis. But, at that same time I finally got in to Hopkins where I now feel I can be better diagnosed and hopefully treated. But new Pain Doctor still wants to stay in the game. I was just there last week to discuss tapering off the drugs (against his advice) and now he wants to send me for MRI's of my hips. WHAT?! Totally out of left field. He himself thinks this is a pudendal or genitofemoral nerve problem (neither of which will show up on an MRI). I'm trying to avoid any more unnecessary expensive testing that involves radiation. I've had enough. Enough, enough, enough. 9 months of useless testing. I've had enough radiation to last a lifetime. Now I just want everyone to leave me alone except for Hopkins and my physical therapist (on the off chance she's doing some good).

Sometimes when you get what you're asking for it's just not what you want anymore.

My internist keeps calling for me to reschedule. He adds no value to this situation. I essentially pay him $350 in cash and then proceed to update him on what I've been doing with all my other doctors (whose records he has). It's comical and a complete waste of my time and money. I'd get more use out of telling my story to a shrink for that price. But, hopefully he will assist with a disability claim if this is not diagnosed and resolved by September. So, we gotta keep him in the game.

And, since there was lots of recent heated discussion among the commenters regarding my Houston PNE trip report, I thought I'd add that I got the insurance company's bill from Dr. Popeney who performed the electrodiagnostic testing (PNMLT, etc) in Houston. He billed the insurance company $1900 for his time with me. I must say, I cried when I saw that bill. Not because I'm paying it - my insurance company foolishly is. But because I thought $1900 for THAT barbaric little session. Amazing. Let's put it this way - they had to stamp in large letters on the invoice they submitted - THIS TEST IS A MEDICAL NECESSITY. Yeah right. It's called guinea pig testing. As a commenter on the previous posting seemed to suggest, this may be the best that they have to offer PNE sufferers at this time, but my response is that's not what all PNE doctors do. The PNMLT is a tolerable test and is what many doctors do (though NOT all because about half the time according to Dr. Popeney the results are normal in someone with PNE). Doesn't sound like such a helpful test afterall. A quantitative sensory test - also a perfectly tolerable test. Once you get into the realm of other electro testing - find out what they're doing. There are a number of PNE doctors out there - use the links provided at the side of my page to find them. They will all return your calls and you can ask them specifically how they come to a diagnosis. What testing they use. To get a diagnosis, you don't have to undergo painful, unnecessary testing for a Doctor's academic purposes. That's not YOUR purpose. The other PNE doctors are not doing all of the Houston testing repertoire.

Going off the Drugs

2009-07-26T23:55:00.000-07:00

Drugs. Or "Medicines" as my new pain doctor corrects me. Whatever you want to call them, I've been keeping the pharmaceutical companies in business lately. But I've decided to taper off all of my drugs and today was day 1 of no Methadone. I made this decision in part because with the exception of the Methadone, the rest of the drugs did nothing to help my pain (and I was on them for many months) and being on the Methadone will stand in the way of getting accurate diagnostic nerve blocks.

Seems totally counter-intuitive, right? I'm in pain, the Methadone helped, I should keep taking it. But, such is life. So I've been weaning off that and the Topamax (under medical supervision). I stopped the Mobic. And did a quick taper off the Tizandine though I was told I could quit cold turkey. I'll have to keep tapering off Topamax (that one has given me some problems) and then start tapering Clonazepam which is apparently the difficult one. My new pain doctor doesn't agree with this but my other treating/diagnosing doctor does and I do so that's the game plan.

I've been on such low dosages of the Methadone now that the pain level is no different. We'll see how I do pain wise (I think there will be no spike whatsoever) but so far nothing has changed except my mind is no longer a bowl filled with mush. In fact, I feel better without all these drugs clogging my body. Since they weren't actually helping with my pain, they were really only causing other problematic side effects.

I had doctors telling me conflicting things on this and ultimately I had to go with my gut and stand up to the pain doctor telling me that I was going to do more harm to myself. Do I wish I could be diagnosed and on a ton of Methadone? YES. But I cannot. Once I have a diagnosis, I'll probably be singing a different tune. I just hope that's soon. First call Monday morning is to Hopkins. "Hey guys, remember me? Want to do that nerve block soon?"

ICLW

2009-07-22T23:41:00.000-07:00

Welcome to another round of ICLW -- a quick synopsis -- this blog follows my journey to find a diagnosis for my pelvic pain. After hearing a pretty resounding "we can't help you" in my hometown (after a negative laparoscopy for endometriosis or adhesions, a trial of Lupron, and too many other tests to count), I hit the computer, did some research and thought this was a nerve problem. I've been pretty much around the country and now it's looking like I may have genitofemoral neuralgia. Pretty rare. The most difficult part is that I'm still not definitively diagnosed, still have no treatment plan. But, I have *I think* finally found doctors at Hopkins that can help me. So, I've got some optimism on my side as I'm weaning off all my drugs to really see if the nerve blocks they're going to give me will help.

What's difficult and beyond explainably frustrating is that MY choice in when to start my family has now been taken away from me. When this nerve problem will be healed -- I have no idea. But as a doctor bluntly put it to me last week "you're not having a baby next year - get it out of your head." The year after that? I don't know. All I can do is hope and focus on getting better.

A Thank You

2009-07-19T21:58:00.001-07:00

To all the kind and supportive commenters on this blog, the letters, e-mails, and card senders - thank you. Your cards now sit on a chest in my living room. It warms my heart to know that so many are rooting for me to get an answer or just simply get out of pain.

For everyone else that finds this blog while searching for their own answers...we're searching together...and somehow I think that makes the search a little easier.

Trip Report

2009-07-18T20:21:00.000-07:00

It was a long week...with "answers"....if you call them those except they're all conflicting....one diagnosis from Dr. Antolak of Pudendal Nerve Entrapment (the one I didn't want) and Maigne Syndrome (basically, stand up straight) and one tentative diagnosis from Ma.yo of Genitofemoral Neuralgia. However, these are only theories at this point and have not been proven until I have a nerve block that brings me relief (even if only 15 minutes). Scheduled to return to Ma.yo in 2 weeks though I'm not sure they have the expertise in this area.

So, clearly still nobody has a clue. If I were a betting woman I'd say I have Genitofemoral Neuralgia. If anyone knows of doctors who are knowledgeable in this condition - please post or email me.

Some highlights from the trip and a review of my Health Care Advocate:

1. Almost being put into a "Pain Rehabilitation Center". Hello 3 weeks of Rehab! Ma.yo took a look at my drugs - prescribed by the head of the Pain Clinic at a top NY hospital and said you are on way too much stuff, you need to get off of this under medical supervision. We're talking 3 weeks in Rochester, Minnesota. 8:00AM to 5:00PM with group therapy, making pot holders and learning ways to deal with my chronic pain - therapy, stretching, relaxation CDs for at night, exercising (I can't exercise, I have a nerve problem in my pelvis!!!!). I'd go totally nuts. I met with the Program Manager and was like Listen Buddy, I'm here to get a diagnosis, this whole drug thing came up at the end of my meeting with my internist so I'm willing to do this program because I am on a lot of useless drugs that I had no idea I had to taper off of but I'm assuming you'll let me leave at will for my doctor appointments. And I negotiated him to THREE appointments. So, Rehab is out. I can taper myself off the rest of the drugs under doctors supervision in NY.

I started having the twitches just being in that place waiting to talk to them. Big white boards telling you where you're supposed to be. Everyone in big tennis shoes. I just kept asking "what did I do to deserve this." I called my Pain Doc while I was there and left a message for him to call me immediately because they were about to put me in Rehab for the drugs that he prescribed to me! Not pleased. I advise anyone taking drugs to find out how long it will take to get off of them before you end up in my boat. For the record: I'm on LOW dosages of: Topamax, Mobic, Methadone (obviously I knew that one was a problem but I take like 3.5mg), Tizandine (aka Zanaflex), Clonazepam.

2. My "Health Care Advocate" doesn't normally live with me so she doesn't know my new "sick person" routine. I can't eat very much because of all of these drugs and their side effects on my system - so I have my own food routine down and it is not to be messed with. But, being a good Health Care Advocate she thought she should try to feed me - Steak, McD's, pastries, etc. So try to feed me she did. I was woken up about every 30 minutes for several hours each afternoon. I believe this may be torture under the Geneva Convention. I still remember the side dishes offered from room service at the Sofitel in Minnesota because she read them to me each time she woke me up - buttered linguine, creamed spinach, grilled asparagus, etc. Tenth rectal exam of the month and sometimes a girl just needs a nap not a side dish. Finally I had to lock her out of our connecting room on the fourth day. Other than our food issues and sleep deprivation, she was an excellent Health Care Advocate. A+ Mom!

This is a must particularly if you are taking drugs and may not remember everything a doctor says, need someone to ask questions you might not think of or are having procedures done. A second person in the room can also press a doctor with tough questions if you don't feel comfortable doing so yet. I on the other hand seem to have the opposite problem. Sometimes when you're too knowledgeable doctors can almost turn on you - particularly if it's an area that they don't know much about. They much prefer the intimidated patient -- that's the patient that I was for the first half of this until I realized nobody was going to help me until I helped myself.

I'm headed to Ho.pkins Monday where I think they know what they're doing in this area. So I'm feeling tentatively optimistic.

Pudendal Nerve Doctors

2009-07-18T15:35:00.000-07:00

I think that Pudendal Nerve doctors such as Dr. Renney, Dr. Conway, Dr. Antolak and Dr. Hibner are clearly a rare bunch that are to be applauded - devoting their time to a condition that many doctors do not believe exists. I still don't know if I'm a sufferer of this condition. Dr. Antolak says a resounding yes based on an abnormal Quantitative Sensory Test (described below). Dr. Renney seems to say yes (based on that test as well).

However, I've yet to have a successful pudendal nerve block - meaning, a block that relieves my pain - this is a diagnostic "must." Until I have a block that takes away my pain, I do not believe I have PNE. These doctors have modeled their practices and steps for diagnosis and surgical techniques after the French - most after Professor Roger Robert in Nantes, France. The French use a successful block as one of the diagnostic tools. My understanding is that without it, they will not perform surgery -- that's how important it is to the proper diagnosis.

My issue with the US doctors I have seen and something to be aware of when visiting any of the PNE doctors is that it is usually all that they do. Know that they will not evaluate you for anything else. If there is any question in your mind whether another nerve is involved - I urge you to visit another doctor first. Now, who that would be - I'm still trying to figure out. Perhaps Dr. Marvel in Baltimore because he is very knowledgeable about PNE and other nerves as well. I have only seen him once so I cannot speak for his long term care.

The problem with the PNE doctors if you DON'T actually have PNE is that Pudendal Nerve Entrapment has likely become an obsession for them, and likely HAD to because they are to some extent outcasts in the medical society with so many doctors disbelieving in the condition, major hospitals refusing to perform the surgery or even knowing how to properly diagnose the condition. If you don't have PNE but have similar enough symptoms and they do one test on you that comes back abnormal, these PNE guys are going to give you a PNE diagnosis (despite the diagnostic guidelines saying otherwise). They talk all about the French - but this is NOT what the French are basing diagnosis on.

This is a devastating diagnosis because your chances of getting your quality of life back are very small. To give this diagnosis without being certain -- for instance, without a successful block -- is very, very premature. Non-PNE doctors have refused to even entertain the idea that I could have this condition. Is that because of lack of knowledge or because I really don't have it? Unknown.

To find out these doctors success rates, please contact them. These are my recollections only: By Dr. Renney's account if I have it correct, injections, self-care, or physical therapy will not get you better -- only surgery will. And even then, only about a third will get better (better being defined by about 50% improved pain levels) - 3 or 4 individuals have been "cured." 1/3 will be made worse. However, according to Dr. Antolak, using his self-care approach for 2-3 years, over 50% of his male patients have been cured (I was so dumb-struck that he was using these stats that I stopped listening to the percentages but they were much higher than 50) -- self-care involves sitting on a donut, no bending, lifting, crouching, stooping, etc. Quality of life is greatly diminished during this period as I understood it. Having a child would clearly be out of the question. He claims injections also have cured over 50% of his male patients. Surgery was rarely needed. Quite a different story and told by two very different men. But both with a devotion to helping those with PNE. Antolak is warm and kind, his heart clearly in the right place; Renney lacks in bedside manner despite himself being a PNE sufferer that was shuffled from doctor to doctor before finding a diagnosis.

So back to me -- I've now had two doctors diagnose me with PNE based on an abnormal Quantitative Sensory Test (see below for what this test is). This is not how the diagnosis is supposed to be made. If you see a PNE doctor and you've got nerve pain in the lower pelvic region -- this will give you (in my non-doctor opinion) an abnormal quantitative sensory test (QST) result and from that, these PNE doctors are quick and ready to make that diagnosis (Antolak will give you the diagnosis based simply on that test; Renney will tell you to come back for more injections to try again - he won't make the diagnosis, that's up to you). Perhaps this is why they are looked at with skepticism by some of mainstream medicine. In my opinion, this is playing a bit fast and loose -- particularly if you're someone that does not have the classic PNE symptoms (pain in the perineum, rectal area).

The Quantitative Sensory Test (warmth) (aka Genital Sensory Test)

Pudendal doctors use this test to test the nerves. It is absolutely painless though it may aggravate your pain levels as it gets your nerves firing and basically gets them confused as shit if you have a pelvic nerve problem! Essentially, it uses an index finger sized probe that is placed in different areas in the pelvic region (outside the body) that tests your ability to sense a change in temperature. The probe goes from baseline (room temperature) to a warmer temperature. You announce as soon as you feel a change to warm. Something abnormal would be if it takes too long to feel the temperature get warm, or if you feel it as hot, or if you feel it lingering as warm or hot after the probe has been removed.

The same type test can be done with cold and vibratory stimulation but is not done by PNE doctors that I know of. These tests are used for other purposes as well - sometimes to test sexual dysfunction.

On the road again...

2009-07-12T02:05:00.000-07:00

Hitting the road again...this time headed to Minnesota. My Mom is coming with me - she will be my "Health Care Advocate" - Dr. Oz and Oprah say these are essential. I only have two complaints about my Health Care Advocate: she "doesn't do night driving" and she cried last time she talked to a doctor about my condition. So we will call her the Moral Support Advocate/Day Time Driver instead. My husband gives me horrified looks when I suggest that perhaps I could do some of the driving on this trip, like a little 5 min. spin around the block to Starbucks. I need some fun! But apparently I am forbidden from operating any heavy machinery. It should be noted that my Moral Support Advocate has been known to drive 50+ miles on the highway with the parking break on. Sounds like maybe she should be forbidden from operating any heavy machinery too.

So next week I'm having an MRN, seeing another Pudendal Nerve expert - Dr. Stanley Antolak and then headed to the Ma.yo Clinic. I have no expectations. I'd like to say I'm going in with hope - but that's not really what it feels like at this point - it's more a matter of going in feeling the pressure to be prepared. Can I answer all the questions? Is the pain worse leaning back? Leaning forward? Sitting? Standing? Coughing? There's a lot of pressure to be a good patient - to be able to answer the questions in a helpful way. Sometimes that's hard when you're just in pain all the time in every position. I'd like to find nuances that may be helpful to finding the diagnosis but that has been difficult.

As I'm packing, I keep adding more clothes, thinking that perhaps on this trip I will just stay awhile at Ma.yo. Last time was a week. I just don't think I can handle coming home without an answer when so many doctors have said this is one of only a couple of nerves. Essentially, I'm unwilling to leave without an answer. It will be too heartbreaking to come home without progress.

I don't have cancer, I'm not dying, I'm lucky -- but a great big pause button has been hit on my life and to a great extent my Husband's life. I am in pain and I want my life back or some semblance of it. Lots of our conversations revolve around the "when you get better"....what we're going to do. Take trips, celebrate our one-year anniversary. Sadly, I'm not sure things will be much different in October. I hope so though. That's what I'm aiming for. I'd be happy with the small scale too. Go for a walk. Drink a glass of wine. Dance. Hit golf balls. Stay out late. Not have a single pill to take. Stop mixing fiber into my water like an 80 yr old.

I've learned how to mobile update so more from the road...

Scolded by the Eye Doctor

2009-07-10T11:39:00.000-07:00

Haven't I learned by now? No doctor appointment is routine anymore. I was thinking I'd breeze into the eye doctor and get a little checkup. I've got about 30 boxes of my current contacts (can you sell those on e-bay I wonder?), very confident that my vision was A-OK. Not a chance. And apparently I have been wearing my contacts too much (like sleeping in them, wearing them days at a time) and my eyes are seriously inflamed. Pictures to go along with that. And I've permanently lost cells that do not regenerate. I'm eye squeamish - no more details. So now I need new glasses and new contacts. I told the doctor to go easy on me, it's been a long year.

My crap insurance paid for like 100 bucks worth of my $450 contacts which means they won't cover any of my glasses so I went out and found some fabulous glasses. Since I'm not working right now I plan to start wearing my glasses about 60% of the time. The problem when your vision is so bad is the peripheral vision problem when you're wearing the cute small glasses. Then you have to literally bend your body down to see to walk down stairs. So, I went with the large glasses trend. Good thing that's "in." Here's to hoping I look somewhat cool.

A vision experiment

2009-07-09T12:03:00.000-07:00

Headed to the eye doctor.

Why am I torturing myself with additional doctor appointments you ask? Well, because my wonderful Husband has decided to go to grad school. So, we're losing our vision insurance in a week. I figure I better go while I can. He went and ended up with glasses. hee hee.

I'm already blind as a bat (contacts are a 7) but I figure I can get a free pair of glasses and lenses out of them perhaps if I swing it right under the vision plan. They will be coke bottles quite literally if I follow their guidelines and don't opt for any of the extras (super thin lenses, etc.). Kind of curious if it's possible and how hideous the end result will be....Perhaps this will be an experiment.

Found a new pain doctor

2009-07-09T08:37:00.000-07:00

The new Pain Doctor was great - he's in private practice. Turns out my prior doctor, the head of a Pain Clinic at a major hospital had been his student many years ago. And apparently not one of his prized pupils from what I gathered. So, needless to say, he wasn't surprised to see me making the move. He thought I was on far too many medications that hadn't been working for me other than the Methadone that are all very addictive in the body -- so we'll have to work on weaning me off of those very slowly.

He wanted to do a diagnostic nerve block tomorrow but I'm already going to Minnesota to see Dr. Stanley Antolak next week and then going to the Ma.yo Clinic and I'm going to have an MRN (MR Neurography - like an MRI of your nerves) and my guy instinct tells me to stick to the original plan. Hopefully this new Pain Dr. will work out. It's a relationship that when you're in pain - it's of vital necessity that it works. You don't need to be buddies but you have to make it work. He is definitely what I was looking for though - someone interested in diagnosis. And interested in decreasing useless meds.

Methadone Induced Shopping

2009-07-07T21:31:00.000-07:00

The Fourth of July wedding in Annapolis was really nice - the bride looked beautiful. But sitting on plastic chairs for 8 hours - not so nice. Husband looked very cute as Best Man in his seersucker suit - so not his usual style but he pulled it off like a champ. For awhile I sat outside the tent and just watched everyone dancing - that was a bit more depressing than I could handle. If ever I could be invisible, it would have been then. 80s bands apparently do not play slow songs for people with nerve problems in their pelvis's to slowly move to. So, Husband and his drunken friends fist-pumped their way thru the 80s, sweating thru their shirts while I drank shirley temples and watched from the side lines on my plastic chair. Not a firework in sight. At least I had semi-tan legs, my new lipstick and there was some late-20s single people drama to keep me entertained.

As for the methadone, the other night I fell asleep seeing men dressed in french fry costumes. Not to psychoanalyze but what in the world does that mean? My brain is turning to mush? I am hungry? Preparing for next years Halloween? My memory is totally shot, I've been obsessed with my medical care, can name every drug I'm on but am starting to forget my doctors names - while with them. And now the weirdest is that I'm turning into a narcoleptic. I just *poof* was asleep suddenly the other day while on the computer and holding up a catalog (fingers marking pages)....I fall asleep while pages are loading on the internet...while doing really just about anything. People think I am drunk if they catch me close to the time I'm supposed to take my next dose. I am officially now a slooooow talker.

These drugs also seem to have lowered certain inhibitions - for instance, shopping. I almost never, never do this. Can't remember the last time I bought something online. However, since starting on the Methadone, I'm now a big J.Crew internet shopper- they have the best really thin cashmere sweaters on sale (extra 20% off sale stuff using extra20 at checkout until Friday) and I'm a skin/facial cosmetics shopper. When in Baltimore there was a mall next door and I bought a couple of things in there - things that I normally would not buy - I would want and think about buying but would just walk away. So it's interesting. And even knowing that, I've still been looking online today at an incredibly overpriced face mask (Dr. Sebagh Deep Exfoliating Mask for Sensitive Skin) that I want to purchase after using a sample - that did miraculous things to the blackheads on my chin - like, made them go away.

Very odd behavior that this drug seems to bring out. But, one could also argue that it has just made me feel ever so slightly better and so I want to get back into the world and this is my way of doing so. Who knows. But a $100 mask is way better than some other things I could be getting myself into trouble with.

Tomorrow I'm seeing a new Pain Doctor - highly recommended to me - hopefully he will help me figure out my meds and come up with a game plan. He is supposed to be interested in diagnosis as well as pain management. So that'll be a first. I've got some important doctor visits coming up in mid-July and I'd like to not be all doped up for them (sounding like I'm 3 martinis in) so hopefully this doctor will agree and help me to decrease the Methadone. I'm realizing now that it was a very bad decision to agree to do it in the first place. I was desperate for help but I should have stayed focused on finding the diagnosis -- stuck it out through the pain. So we'll see what happens...Can't second guess things now.

Pelvic Pain Nerve Doctors

2009-07-07T20:54:00.000-07:00

I didn't intend for this blog to mention doctors by name but I now realize if you're facing a pelvic pain problem that is nerve related -- you're going to need help finding someone to treat/diagnose you. I firmly believe there are many women suffering from pelvic pain and being simply told (as I was) that "many women just suffer from pelvic pain without a known cause and basically that's just the way it is." Well, no, that's not good enough. So before you pack up shop and invest in 364 days worth of flannel PJs, make sure you don't have a nerve problem because that seems to be the last area looked into. So, on this blog I will start "naming names" so to speak when it comes to pelvic pain nerve doctors...since there seem to be almost none. Do I need to go to medical school after this or what?

Dr. Richard Marvel (an OB-GYN) in Baltimore is excellent. Saw him Thursday and even asked if I could give him a good review online since that's how I got his name! He has a Center for Pelvic Pain at the Greater Baltimore Medical Center. He seems to really do a little of everything but since I've had everything ruled out, we spoke exclusively about nerves and he has great diagrams in a handy little book in his office that he shows to you while you speak. If you come informed - he'll treat you so - it's much appreciated.

To make an appointment you have to fill out a great deal of paperwork, fax it all back in, and then you'll get an appointment time. I didn't have to wait too long. I sent my records in advance with a cover letter explaining my problem and summary of my symptoms so he was familiar with things. We sat in his office and discussed my case for awhile, at that point he seemed very certain my symptoms were a classic and very painful nerve problem - possibly even involving two nerves. I got more information in that sit-down than I did during my two days in Houston meeting with 3 doctors to discuss the same nerve situation. Dr. Marvel has a very matter-of-fact style, is approachable, down to earth and will absolutely answer your questions. No avoidance tactics at work there.

He does unguided nerve blocks in the office (this may be a problem to some). I felt like I was in good hands so I let him do the unguided blocks on me - I had genitofemoral and pudendal. He was very kind when I needed some time to figure out whether the nerve block they gave me was working or not. Not a moment of impatience from him. He does guided blocks as well (elsewhere at the hospital) but if you're going in for diagnostic things, be prepared that he may offer you an unguided block.

I spent about 3 hours there. I left with his thoughts on steps forward. I still don't know what nerve is causing my pain but he had an actual plan of action (weekly injections) to try before doing something like a surgery which we discussed in detail. This is the first real plan of action that I have received. I highly recommend seeking Dr. Marvel's opinion.

And, when I called the office later to get a copy of my records, they did charge for them, but the faxed them to me the same day.

Orange feet traveling

2009-07-01T19:26:00.000-07:00

I'm headed to Baltimore tomorrow. I'm going to a wedding in Annapolis this weekend but managed to time it right and squeeze in an appointment with a pelvic pain specialist in Baltimore. Again, it'll be nice to get out of the City and taking the train down will be relaxing. After backpacking around a lot of Europe by train, it brings back good memories. If I close my eyes maybe I can pretend I'm somewhere in Italy on vacation. The best part is that a good friend will be at the wedding so we'll get to hang out. Nothing beats that.

I'm getting more and more forgetful (words, things) so even packing for a 3-day trip took quite awhile tonight. Tomorrow I get to increase my Methadone dosage, my pain has increased so hopefully this increase in dosage will help combat that. I just keep getting stupider! Grrr! But if that's what it takes to be out of pain, so be it. I joke that my husband married me because I was smart and pretty but now I'd better work on the pretty because by the end of this I may be dumb as dirt. I'll be his "trophy wife".

Pelvic Floor Physical Therapy

2009-07-01T14:46:00.000-07:00

Lots of people stumble onto this blog while searching google for pelvic pain and physical therapy, things like that. And one particular commenter was about to go in for some pelvic floor physical therapy and felt scared so I thought it might be useful to do a post about what to expect when you encounter the unknown world of pelvic floor physical therapy.

Many women (some men too) go to pelvic floor physical therapists for bladder and bowel disorders like incontinence, painful intercourse, pelvic pain, IBS, etc. When I started, I was very skeptical that this sort of thing could relieve pain. I'm still not sure! But for me, I do know that whatever my problem is, my muscles and ligaments have tightened and shortened beyond belief (both internally and externally) over the last few months due to pain and a PT is the only person that's able to help with that.

Before I went in for my first PT session my Dad had been telling me how useful PT exercises were for him when he hurt his back - so I was expecting some exercises and stretches and off I'd go. I was naive. I didn't even know this type of PT existed so boy was I surprised when I ended up on the table with a hospital gown on and a non-MD getting more friendly with me than my OB-GYN. What happened to my pants? Where are the stretches like my Dad said?

If you find the right PT, these women seem to have more knowledge about your anatomy (that they'll share with you) than you will find with any other Doctor you're working with. The key is finding the right person - I think this is even more critical than with a doctor. Do not give up if you see a couple of people and don't like them or don't like whatever technique they're using. Keep looking. And from what one of them said to me, something like: "we all get the basic training but then we all specialize in certain things so X you saw last week may have training in that but I have some training in Y." That was very interesting to me. So do not give up if you do not like the first few people you see. These places are very used to their clients requesting certain people, refusing others. Don't feel bad about doing that. You're getting treatment for sensitive areas, you're the boss!

I pursued PT for a few sessions and saw 2 different people, I didn't particularly hit it off with them and I didn't feel like they were helping me. I didn't leave the sessions feeling better or worse. Just the same. Which isn't a good thing. So I gave up for about 2 months. Fortunately, I decided to give it another try and I'm really glad I did because I made an appointment with someone new who so far has been a great match for me. That's why I'm now a believer that PT is worth giving a good shot with the right person. Now, will it help me cure my pain? Who knows. Will it help resolve these muscle problems I have because of the pain and the scar tissue I have because of my surgery? It should definitely do that and I'll be happy with that result. All that muscle tightness isn't something I feel until I'm on the table and someone gently tries to massage any muscle from below my chest to my ankles basically -- I never knew I had it until I went to PT so it could be playing into your problem...or resulting from your problem...

The first session is typically much longer - maybe an hour and a half - and will probably be your least favorite. It's a full evaluation (looking at your spine, walk, hold up a knee, vaginal). For me it wasn't particularly painful but I suppose it could be depending on your problem. The modesty factor is the only uncomfortable part which you'll quickly get over soon as all of the PTs I have encountered have been quick to put you at ease. And I have found PTs are better than most OB-GYNs about making sure you are covered up even when they are doing an internal exam or internal work. I have found PTs to take things slowly, explain what they are doing if you ask (while they're working on a particular muscle) and you can have a running dialogue during the session if you want to - I try to get info out of them while they're working! They'll tell you what they're doing before they do anything that may cause you any pain - I would imagine this is the case particularly if you are there for issues related to pain with intercourse.

After that, my PT currently treats in 45 minute sessions. The only pain I experience is when she is working on really tight muscles. But when they do internal myofascial release (working on tight muscles inside) I really don't feel it. They are also very gentle - so find the right place, the right person and give it a try. It is worth it if you can help regain a part of your life back that has been taken away from you.

Please feel free to post any questions or contact me.

Hot flashes finally found me!

2009-06-30T18:36:00.000-07:00

So interestingly enough, I managed to elude the hot flashes while on Lupron (without add-back therapy) but I've got them now that I'm on Methadone (and at the low dosages)! Unexpected. Funny how that works. So my Mom and I weren't able to bond over Menopausal hot flashes as I previously expected. No exchanging embroidered pillows: "real women don't have hot flashes, they have power surges." I don't think they make a line of pillows or cards that covers drug induced hot flashes - though they clearly should. There's a market for these things!

Since I did not have the third shot of Lupron last week, I am already starting to feel a bit more like myself -- emotional stability here I come! Hopefully that means the hormones are kicking in and things are "turning on" for lack of a better phrase. I'm not sure how quickly that happens though.

As I type this I am laying on the couch looking at my tan legs and orange, splotchy, dirty, looking feet. I am clearly a novice with the self tanner. I must fix those before my doctor appointment Thursday. I hate self tanners, they make you smell so weird, but I always give them a go once every summer.

Retail Therapy

2009-06-28T18:45:00.000-07:00

With the Methadone making me feel better (I'm now on 5mg/day) and a close friend's wedding over the Fourth of July, Husband took me for some retail therapy this weekend. I'm usually not into shopping but just being able to get out of the house was awesome.

I usually wear black but I thought I'd shake things up for this wedding so I bought a bright fuschia dress, it's beautiful and some silver shoes that I had been lusting after for months...they were half-off when we happened to see them. It was fate. I think my Husband would have bought me anything at this point -- he was just happy to see me out of the apartment and NOT at a doctor appointment.

Having not seen the sun for many months, I could easily be mistaken for an extra in the new Twilight vampire movie. I picked up some Clarins self-tanner. So, perhaps I will post some before and after pics (if they aren't too frightening).

I've decided to take a little bit of a medical break today - no researching or obsessing so I also ordered some new lipstick that I've been wanting to try. It's called Lipstick Queen - Medieval. The idea is that it's going back to medieval times when full coverage lipstick was considered a sin. Instead, women used lemons to stimulate the lips and stain them a see through blood red. So it's very sheer and has some Vitamin E. People rave about it.

BUT, I'm still making plans and progress on the medical front. I will be sneaking off before the wedding and seeing a pelvic pain specialist in Baltimore before the wedding (which is in Annapolis). Since I'll be in the area I figure I might as well go a day early.

Houston Trip Report - No PNE diagnosis

2009-06-28T15:19:00.000-07:00

Husband and I made it back from Houston, alive, still married, and Husband didn't drown after his swim in the pool. I do not have a pudendal nerve entrapment from what it looks like so far. So that is great news. I don't know if the doctors we saw knew what they were doing and it's just a developing area of medicine or if they were complete and utter quacks. Here's the trip report - and again, I give these Doctors names for the sake of helping others who are searching for information regarding this very rare nerve problem of which VERY few doctors in the US treat:

Day 1: Meeting with Dr. Renney who didn't want to see any records other than my CT and Pelvic MRI. He took a Pelvic X-Ray. We briefly discussed my history though I'd call it more of a cross-examination of the answers that I gave during our 15 minute phone consultation. There's a big difference between lacking in bedside manner and a point where you feel like you're just not in good hands. His personality crosses into the latter. The takeaway - my symptoms fall into the questionable category -- basically, I'm not textbook. I knew that going in. The big surprise - leaving Houston no doctor would tell me whether or not I had a PNE diagnosis. I would have to come to that conclusion on my own based on the testing they did, the history I discussed with him and the results of the nerve block. Sounds like limiting liability to me and basically the weirdest medical statement I have ever heard come from a doctor's mouth.

Next appointment will live on in my nightmares. Saw Dr. Popeney, neurologist but a D.O., not an M.D., for the PNMLT and other electrophysiologic testing. I must question anyone who goes into this particular line of gruesome testing and lacks any bedside manner - it's one thing to do it and believe you are helping to diagnose those in pain but it's another to do it when the results are essentially meaningless since the nerve block is really all that matters diagnostically and 50% of people with PNE have normal PNMLT testing.

A "Cuban Doctor" who barely spoke English took Husband and I into the room where these torture procedures were going to be done and suddenly I felt like I was in 1950s Cuba (except we're across the street from Old Navy). No major medical center in sight. This is what people desperate for a diagnosis do. I brought myself to Houston to do this - this team is supposed to be top notch. I look around this room and top notch is not what I am seeing. I'm trying to get this "Cuban Doctor" to tell me if the real Doctor is going to come and meet my husband and explain to us what is going to happen in here. He tells my husband to stay. He then tells me to put on the paper gown, cover myself up with the paper sheet and get on the end of the table "like I'm about to deliver a baby." This has me very upset now. At that point I'm on the verge of a meltdown and I tell my husband to just leave or I'm going to start to cry.

The PNMLT was pretty bad it measured the speed of the nerve conduction. The "Cuban Doctor" was standing at the 1950s machine happily running the electrical current (not a single "doing ok?" from either of them) while the doctor is calling out "another 10!" "another 20!" The whole thing was surreal. That's the only test I'd read about. Well, ladies, it gets worse. Way worse. In the other test, let's just say it involved needles in places you don't want them, a clamp in another place you don't want it, and electrical shocks. The "Cuban Doctor" got to do about 20 more electrical shocks. You have to hold yourself down onto the table. Pure torture. And complete heartlessness from those in the room. Then some temperature testing similar to what I have had done before - abnormal. They tested a new spot in Houston though - near the Pudendal nerve - that was the only abnormal result of the day.

Interestingly enough, no blood pressure check beforehand, no female nurse present in the room. I don't recall even signing a consent form. That's certainly not the way I've seen medicine practiced the last 8 months. We go to get the results and the Doctor essentially says your results were normal for the PNMLT but they are about half the time and people still have PNE. So, thanks for making me your guinea pig!

Day 2: Meeting with a physical therapist. Her first question - "so what does Dr. Renney want me to do with you?" How the hell am I supposed to know? What follows is absurd, comical and yet another place I dropped off some dignity in Houston. The highlights: I practiced pooping her latex finger out. Yes, you read that correctly. I've been constipated for about 2 weeks because I am a walking pharmaceutical plant and I guess she thought teaching me how to poop would somehow change that? It was horrifying. I will not go into any more detail than that. And we finished the appointment with the conclusion that my hamstrings are tight - that information is about as useful to me as her telling me that my roots are looking a little dark. No shit my hamstrings are tight. Did I need to fly to Houston for that? Why don't you actually check out my pelvic region and you'll find that every single muscle there is tight due to pain. And then the real kicker - on the way out the door she tells me to do Kegels exercises. This is specifically what you are NOT supposed to do if you have a pudendal nerve problem or any other nerve problem in your pelvis which leads to shortened, tightened pelvic floor muscles. At that point I had another appointment to get to so I just said ok thanks I'll do that. I couldn't even believe what I was hearing! She didn't even feel inside my pelvic floor or she would have known that she just gave me the exact opposite advice of what I should be doing.

In 14 days I have to e-mail Dr. Renney and let him how I am doing and I will be sure to mention that his Physical Therapist is giving wonderfully awful advice to his patients. Not that he will care.

Next appointment was the big one, going in for the nerve block. After the indignity of learning how to poop, I couldn't even speak in the car for awhile so I was really second guessing whether this was the right place to come, the right thing to do. But this block was going to tell us whether or not I had PNE. The Dr. who did the block was excellent. Dr. Murphy. The nurses there were great. It was at Memorial Hermann Sugar Land Hospital - very clean and efficiently run. The only differences from previous nerve block procedures - no blood pressure taken beforehand, the nurse instead of the doctor went over the consent (very quickly) and I was allowed to keep my jewelry on. I didn't even meet the doctor until I was in the CT machine. They numb you up and then inject the pudendal nerve thru the butt - I had the right and left side done since I have pain on both sides. Wasn't too painful of a procedure except repositioning the needles to make sure they're in the correct spots at the nerve. You're very numb right afterwards and they bring out a chair, sit you down and everyone stares at you and they want to know if you are still in pain. It's a lot of pressure and since I've had blocks before I knew that this is what would happen. I had a hard time telling, as I have in the past. You're numb, you feel weird, but I knew after a bit that it didn't work. We even left the hospital and drove a bit, got out of the car and walked around it a couple times to make sure.

The doctor called as promised about 1 hr later and said he was very surprised that the block did not work since part of my testing from day 1 had been abnormal (the warmth testing). So he believes the steroids that were in the block may help over the next two weeks. I AGAIN said but I am on Methadone which is making me feel better so how will you know which has improved me in two weeks. If you have PNE the block is the diagnostic tool. The steroids are simply added in there as a way to give you some therapeutic help afterwards. They are NOT part of the diagnosis as they are now trying to have me believe. I'm starting to believe this group is for whatever reason interested in the money or proving their cause, I'm not sure which.

Please contact me if you are considering seeing them and would like more information.

Husbands..Ugh!

2009-06-24T11:59:00.000-07:00

So the methadone is definitely helping. Yay! Tomorrow around this time I will have electrodes up in places that they do not belong. I will think of it as a field assignment for the government investigating new ways to torture the detainees. But, I really couldn't care less since it will give me answers one way or the other. And, on all these drugs, I'm pretty out of it anyway.

Husband and I have been e-mail today debating his wardrobe for this trip as I put his clothes that he had set out into the bag we are sharing. Bathing suit? Shorts? Flip Flops? Ummm...last time I checked we were going to 4 very important doctor appointments on a 2 day trip not a vacation to cancun. He's supposed to look professional. Meaning, cover up the hairy legs and nasty feet. He had to cancel a bachelor party that happens to be in the same state so I'm thinking he's still holding out hope that I'm going to feel good after my injection Friday and that he's going to change his ticket and send me off on my way to fly home to NY alone 3 hours after an injection into my pudendal nerve. NOT happening. I emailed him when I saw the bathing suit. I was furious. A bathing suit?? He actually said he was planning to swim in the pool tonight. Oh my goodness. He must think I am drugged beyond belief because that man is not going to get into the Marriott pool at 1 AM and swim his fat ass around. Just for lying to me he will now be forced to get into the pool and swim around while I sleep. Husband, I hope you enjoy your swim. I hope it is cold. Very, very cold!

A nerve problem? Off to Houston we go...

2009-06-22T20:24:00.000-07:00

I finally got in to see a Pudendal nerve specialist in Houston, Dr. Renney, this week due to a cancellation. Husband and I are flying down later this week. I don't usually blog using particular doctors by name but this is an area where there are only about 10 doctors in the US that will diagnose this condition (pudendal nerve entrapment or pudendal neuralgia) so I want to be useful to others seeking information on the internet.

I do not have the classic symptoms but I do have some similar pains and so much else has been ruled out that they think it is worth seeing me and evaluating me. This will be a 2-day evaluation that includes a PNMLT (Pudendal Nerve Motor Latency Test), a meeting with a physical therapist, a meeting with Dr. Renney, and the CT guided Pudendal Nerve Block. This is NOT the diagnosis that I want to receive. All baby-making plans would be put on hold permanently and true pain relief may be permanently out of reach. The baby issue all the more disturbing to me.

If I do have PNE, essentially nobody is ever cured. I asked about pregnancy rates because the surgery that they do in Houston involves cutting ligaments in your pelvis and the response was simply you can have a baby if your pain level tolerates it. I'm not going to start thinking too many steps ahead but I feel really good that I'm going down there this week and I'm going to be able to finally rule this in or out. If it's in, I've got some other experts lined up to meet with. Let's just hope this isn't it.

ICLW...

2009-06-22T12:36:00.001-07:00

This is my second ICLW. Found sound great new blogs last time around and received lots of supportive comments. I hope you do too.

I'm 28 yrs old. I started this blog to chronicle what I expected to be 6 months on Lupron to hopefully "cure" my undiagnosed pelvic pain (after a negative lap). I figured Lupron had gotten a bad rap on the internet and I'd blog about whether or not that was the real case. However, I'm stopping after 2 months since my problem is looking like it's nerve related - possibly genitofemoral or pudendal. And now I'm just an emotional, hostile bitch with an undiagnosed nerve problem. Even though I've now had my reproductive organs examined every which way to Sunday, a nerve problem can take years to heal which brings lots of anxiety and questions about the when and if related to starting our family. It's amazing how difficult it is to get diagnosed with one of these nerve conditions -- if that's what I even have. So, this blog seems to take a different direction every week...

My weekend

2009-06-22T12:13:00.000-07:00

The weekend in Montauk was good - it was fantastic to get out of the city. Grass! Not so good for the pain but very good for the spirits. I realized I hadn't been out of the city since Christmas time other than a week in Minnesota to be poked and prodded at by doctors. The wedding itself was a bit rough - a catholic one - all rise, then down, then rise, then down, then rise. Finally, I was just down.

The Methadone hasn't really kicked in for the pain yet. It's definitely making me more sedated and slowing me down mentally. At dinner the other night I knew I wanted to know what the soup of the night was but I asked three times in a row what the ice cream of the day was. It's frustrating. I woke up in the middle of the night and asked my husband if he was ordering Lenny's (this is a sandwich place in New York). Weird.

I had complete and utter vindication when I met with the surgeon on Friday that I'd been referred to for this wacky idea of exploratory surgeon. He was like "umm, I'm not going to cut you open unless someone has an actual reason why." His advice to me - find another pain clinic since your current one isn't interest in doing diagnostic blocks on you. Finally, someone that agrees with me that their philosophy is dead wrong!

Methadone

2009-06-18T12:40:00.001-07:00

So now I'm on Methadone. I could try and make some funny comment about how I wish I was coming off of Heroine instead of dealing with this crap but I'm not really feeling in a humorous mood today. It poured all day. Fitting too because it was one of the more frustrating days of this journey. Probably a low point just because I'm starting Methadone which is in some sense, me having to acknowledge that a diagnosis is just not right around the corner. However, I am feeling hopeful that the Methadone will help and I am working on getting seen by specialists in Baltimore.

I had a real argument today with my Pain Clinic Dr. regarding their treatment philosophy and my treatment in general. In a nutshell, they treat pain and couldn't care less what the cause of it is. That just isn't good enough for me - I'm 28 not 88. Every now and then I encounter a doctor and I think to myself when this is all said and done and I have the answer to my problem, you're going to get a letter from me. This guy just made the list. To tell me that he has gone "above and beyond for me" by having 4 telephone calls with one of my other physicians (at the same hospital) is not above and beyond. When you're working at one of the top hospitals in the country, this isn't "above and beyond," this is to be expected! His letter will include this detail to give it a little flourish. And he puts me on Methadone and then refuses to sign any disability paperwork. Nice guy. I also had to pee into a cup for a drug test. I'm not entirely sure how I feel about that - do they not trust me? They're testing to see if I'm taking other drugs and if I'm complying with my current meds. The whole thing just left a bad taste in my mouth.

So I've now taken my Methadone. I don't know what to expect at this point - maybe in an hour I'll be pain-free while hallucinating clowns dancing in the apartment? It seriously might have been easier to track down heroin than a pharmacy that carries Methadone. Very surprising but that's a story for another day. I may be banned from several CVS's for emotional outbursts.

Husband and I have to go to a wedding in Montauk this weekend. It's somewhat frightening that I will be attending a black tie wedding on day 3 of Methadone but maybe I'm just giving this drug too much hype. We'll see what kind of wedding guest I make! We have one other wedding to go to this summer but Husband is best man so we'll have lots of events to go to whereas this one we just have the wedding and reception so I'm totally viewing this as my summer vacation. The hotel is really nice and I am absolutely dying for a change of scenery. Even if I end up really sedated on the new drugs and just hang out in the room it'll be a major improvement to change the location. And thanks to the Topamax (aka side effect: weight loss miracle drug), I'll be wearing a fabulous dress from 2 years ago. I tried this dress on 2 weeks ago and looked like a stuffed sausage but last night put it on and was good to go.

Lawyers, Doctors and Insurance Companies

2009-06-17T13:13:00.000-07:00

These people love their forms! Forms, forms and more forms. Aren't we supposed to be worried about the earth or something? Didn't anyone else watch that absurd ABC show Earth2100? Shouldn't Obama go after all these tree-killing, time wasting, form makers before the earth becomes a desolate wasteland as Bob Woodruff said?

I spent all day Sunday filling out forms for potential new specialists. You know you're seeing a specialist when they fax you a 20-page form that you have to fill out before they'll even give you an appointment time. I didn't know you could even ask 2 pages worth of questions about my bowel movements but ok. I wanted to just write in large letters "they are fine thank you for asking" but I figured that would not get me into the temple of doom. You get what you ask for - I'm always annoyed when I show up 30 minutes early to a new doctor appt and it's a one page questionnaire that just wants my name, address, and insurance info.

The lawyers (that would be my employers), they love their forms too. Forms about being on disability, etc. All required to be filled out with particular dates. Like I have any control over what date my doctor says I can return to work. Hello, my doctors are clueless. I'm going to be lucky if I get any notes out of any of them since they all can't stand dealing with me. And because of whatever arbitrary state policy we're living under, I have to get notes every two weeks. I've had to call my neurologist 5 times to get them to fax me my one page record - what kind of luck am I going to have getting someone to certify every two weeks that I am disabled? I think it's safe to say not much. Though I will certainly try. I've got two phones and a lot of free time on my hands.

And then there's the lovely insurance company forms. Since almost everything is out of network, there's forms for that and of course they're the insurance company so they're slimey suckers to begin with so whenever I correspond with them I have to copy every single piece of paper. More paper! And then they send me bizarre letters back, I call them, they try to get me to answer unrelated questions, I refuse, and on it goes....

If it weren't for all the bureaucracy that goes along with "getting better" maybe I could actually relax and get better. Geez, I'm starting to sound like Michael Moore in his documentary Sicko. I better take a break.

My next post will actually have some uplifting doctor news - a PNE specialist that's willing to see me soon - though this will involve a flight to California (change of scenery is always good though). And no advance forms!

The illusion of kindness

2009-06-16T17:31:00.000-07:00

I finally had my first phone consultation with a pudendal nerve specialist. To say he was a jerk is an understatement. But, in a way I don't blame him. It's a 15 minute call and he's there to ask your symptoms and then take your questions. However, when you're offering up to someone that there have been only 4 or 5 people that have been "cured" out of the 400 surgeries you've done, and you say it so matter of fact, it's a bit shocking. As for future pregnancies, apparently it all depends on your level of pain since the surgeries don't seem to help too many people. There was no kindness from this man. You can be matter of fact and ask questions and get the point across but you can also have a comforting tone about you that says, yes, we'll help you figure out while you're in here one way or the other whether this is what you have. I mean the man said essentially those words, you'll either get a diagnosis down here or you won't. But that was the chance to toss in (without wasting any of the 15 minutes) a moment of kindness. A few months ago I said I just need a smart doctor, no hand holding...now I guess I wouldn't mind a smart doctor that's also somewhat compassionate.

It just blows me away how doctors (and I think in response, their assistants) treat patients. We are not humans to them. We are pieces of paper that form charts, a bundle of symptoms, organs, drug-takers, drug-seekers. We are not people that feel pain or sadness or need compassion. I suppose that's just the way it has to be. You'd be emotionally bankrupt as a doctor but there must be some sort of in-between. Give a little bit of kindness to each patient, speak words in a kind tone at a minimum. That's human decency, right? Hell, fake it a little! My Pain Clinic doctor does that, I know he's full of crap but I appreciate the words that are coming from his mouth and the fact that his brain knows that it's part of his job to say them. It's an illusion but sometimes we need the illusion.

Lupron Status

2009-06-16T15:03:00.000-07:00

For those insterested in the Lupron aspects of this blog, I've been on it 7 weeks now. I have had a laparoscopy and do NOT have endometriosis or adhesions. The Lupron was intended as a last ditch effort, shot in the dark to rule out a gynecological problem and some studies have shown that it has helped women with pelvic pain and negative laps. My RE said if it was going to help me, it would help by 2 months. Whether to do the 3rd shot is basically up to me. Since my symptoms (pain) have only gotten worse on Lupron, I'm most likely going to opt not to do the third shot next week since things seem to be pointing in the direction of a nerve problem now. Note, if you do have pelvic pain and you start on Lupron, you could be aggravating a nerve problem so that's something worth asking about in advance.

Let me first say -- Aygestin add-back therapy -- now THAT was the devil's drug for me. It took me about 2 weeks to figure out what was the problem since all the internet reading I had done made me think Lupron was the cause of my problems but oh, no, it was the Aygestin (which is supposed to help you, give you a little bit of hormones, make things easier). So be warned that if you start on Aygestin and start acting like a crazy insomniac, it may not be the Lupron, it may be the Aygestin. This was not something I stumbled across on the internet because insomnia is a side effect of Lupron. I barely slept for two straight weeks and was completely manic. Now I know what my psych textbooks were talking about.

Symptoms of my Aygestin Mania: I cleaned my hardwood floors on my hands and knees (I'm a person in chronic pain!) who doesn't care what the floors look like, I cleaned the grout in my bathroom with a toothbrush, I woke my husband up at 6 in the morning to get his boxers so that I could start my dark load of laundry, I painted pirates all night long, I bought various art supplies, I scrapbooked the hell out of about 4 years worth of pictures, I reorganized my husband's closet so all the shirts and pants hung on matching hangers facing the same direction, by color. I was a nut. I was so far gone it took my husband one morning saying you MUST call the doctor, NOW.

Husband and I had an agreement when I started Lupron that he would watch over me and let me know if I needed some kind of medical intervention - clearly he dropped the ball on that one. Your wife was awake for two weeks, doing bizarre stuff, dude, I think that's problematic.

Since I've only been on Lupron 7 weeks (with no add back now) and I don't have endo, everything I say must be taken with a grain of salt...but, my experience on it has been fine (Aygestin excluded!). But up until now, no joint pain, no headaches, no serious emotional instability, no weight gain. However, I would advise if you do have some emotional issues when starting Lupron, you should make sure you are closely monitored while on it. When I asked my Husband if he thought I seemed normal on Lupron he said no, I was a bit unstable, "you don't normally start crying while watching TMZ." So, yes, the crying thing is a problem. Particularly if you are encountering new people, trying to have normal conversations, or even more so if you are trying to see doctors (your file goes into the nuts stack when you are crying for no seriously good reason).

The only things I have noticed on Lupron are some temperature issues - not a single hot flash but I do have periods where I am "hot" and then times where I am "cold." Husband and I used to agree on the temperature of the apartment. This is no longer the case. He comes home from work and I have turned OFF all of the air conditioners so that they cannot come back on under any circumstances. He does not understand this, he thinks we might as well rip out our central air and just get window units since I refuse to set them to a temperature that allows them to turn back on. But, no hot flashes so this is not something worth complaining about. One note on this that I thought of after posting -- I am on Clonazepam for my pelvic pain which I have read is also used to treat hot flashes so this may be why I have not experienced them. I may have also benefited from some off-label side effects of my other drugs i.e. Topamax for neuropathic pain has been said to be a mood stabilizer in some. So everyone's experiences are different.

Lupron brings out some hostility. I wake up, find that Husband has peed two large drops on the toilet seat (yeah, what's new) and after I brought him in to show it to him (would rubbing his nose in it work or is that just the dog?), he then claims that I slammed the door and told him to die. Now, the Lupron does make you a bit forgetful so I really don't remember saying that he should die over some pee but since it sounds really hostile, it's probably true. As long as your Husband isn't on Lupron or exhibiting Lupron like behavior, your marriage will survive.

So, all in all, the Lupron experience has been fine. Other than Aygestin, which for me, was truly Satan's drug, just get the tissue box ready, wear layers, and tell your significant other that any minor infractions (which you cannot inform them of in advance) may be punishable by death.

Memory altering drugs

2009-06-15T17:39:00.000-07:00

As my husband and I continually debate what to do about my status at work (I'm on disability), which doctors to see, whether to go to a place like Mayo or Hopkins, which specialists to pursue, etc., he CLAIMS that I keep changing my mind and not remembering. Of course this is a woman's prerogative at all times. But, he believes I should have to write down my opinions on these topics because I am supposedly changing them and not remembering (like on the hour). He not so subtly imply that it is the drugs I'm on! I think perhaps he is just not following along due to the complexities of the female thought process.

To the man who picks lint out of his belly button on a nightly basis, I am not going to write things down for you, you must learn to just follow along.

Back to PT...

2009-06-15T17:15:00.000-07:00

Dragged myself back to physical therapy tonight after a two month hiatus. There are only so many hands you need in your uterus during any given month. But, I'm back in the game. The head woman was able to evaluate me for a possible pudendal nerve problem and she found one on the right side. It's not good news but at least I know I'm headed in the right direction with all my phone calls to every specialist in the US (and there aren't that many). Hopefully someone can see me soon. I need instant gratification! All I want is for someone to inject my pudendal nerve with a block and then I'll know if this is what I have.

The problem is, you gotta pick your pony. I suppose it's the same problem with any medical condition. You want immediate gratification and you have to temper that with who you think is at the top of the game. I just really don't know and all I have to go off of are internet forums and as I've discovered, the internet can be a VERY misleading place. People were talking about Lupron like it was the devil's drug (and for many it is) but for some, it is fine (and those aren't the people posting). And I think the same is true for some of these PNE doctors I'm looking at.

Waiting...

2009-06-14T19:48:00.000-07:00

I waited by the phone all day Saturday for a scheduled phone consultation with a Dr. down in Texas. He is a specialist in pudendal nerve entrapment. We had a call scheduled at Noon and I never reached him. His call center paged and paged him and I sat by the phone all day waiting. It was incredibly frustrating. Hopefully we can get this sorted out and have the call on Monday. He will be the first PNE specialist that I'll get to talk to who can say thumbs up or thumbs down as to whether I should be evaluated for this. There are only about 10 of these specialists in the country and none of them are affiliated with large academic institutions. I've got calls into all of them. Now I'm just waiting...

I started this blog as a chronicle of what was expected to be 6 months on Lupron. Turned out to be 2. And 2 unhelpful ones at that. I'll post soon enough about my experiences all in all on Lupron. On Thursday I go to the Pain Clinic and this blog may turn into one about life on Methadone in addition to just life waiting for a diagnosis, waiting for a dr. to stop telling me that sometimes things just can't be figured out, waiting to stop logging onto facebook and seeing somebody else had a baby, is pregnant, went to a concert, took a trip, while I'm still laying here waiting to get better.

Hypogastric Nerve Block

2009-06-12T17:17:00.000-07:00

To sum it all up....unsuccessful. Bummer! Today I had a hypogastric nerve block to try to help my pelvic pain. In simple terms, you lay on your stomach, they inject needles on either side of your spine in your lower back and inject anesthetic around the sympathetic nerves which supply the organs in your pelvis and are located on either side of the spine in the lower abdomen.

They take their sweet time during this procedure because there are lots of tiny blood vessels down there that they do not want to touch but other than a few painful moments, this was really not that bad of a procedure. If you're going to have it, it's really not that uncomfortable. I've had two prior nerve blocks in the groin area and those were indescribable pain so I was expecting something similar. This was nothing like that. The only negative was that they use a very small amount of dye (aka Radiation) to ensure something...I don't remember what...the right spot, no blood vessels, I don't know....but I've had lots of radiation at this point so I've been trying to avoid that.

The injection sites were very sore so I took a Vicodin HP - wow, that stuff is really effective! Does absolutely squat for my pelvic pain but within like 15 minutes my injection sites didn't hurt anymore and they had been feeling really, really sore.

I did get the chance to speak to two of the pain clinic docs for quite some time and I have an appointment next week so I'm feeling good that I'm going to get some kind of plan next week whether it be new drugs to try or new nerve blocks to try, something - I hope. Because as of now, the neurologists referral of me to a surgeon for an "exploratory surgery" of the genitofemoral nerve in my abdominal wall is definitely NOT the next step for me. So Jeanne, your comment to a prior post is very timely, appreciated and taken to heart because one of my doctor's was very quick to say oh you have to open things up and look around and if there's a problem with the nerve we may just have to cut it - like it was no big deal. Clearly it is and your comment is certainly staying in my mind. So thank you for posting.

Totally cheating but losing weight on drugs

2009-06-11T18:21:00.000-07:00

One exciting upside to all of this nonsense is that the Topamax I'm on really decreases hunger so you lose weight. Like when Rachel Zoe or celebs says they just get so busy and "forget to eat" maybe they're just on Topamax because I definitely never forgot to eat before. But now I have to make myself eat a bowl of cheerios or something during the day. The pain clinic warned me of this "weight loss" side effect when they put me on it.

However, my Internist is "very, very concerned" that I've lost 2.5 lbs since I saw him 8 days ago - I need to "eat MORE!". I tried to explain to the man that I have never been this heavy, I have a closet filled with clothes that don't fit, I haven't been able to move in months (and I was a lawyer before that which contributed to some weight gain) so we're really heading in the right direction with this weight loss thing. It's the only good thing in months!

If you're going to be in pain and unhealthy, why not be thin and fabulous looking? Come on Doc! I could lounge around in my skinny jeans then. Nothing makes a girl feel better than that. He told me to go eat a high fat meal. Boo!

Dr. to Patient: you go figure it out

2009-06-11T18:10:00.000-07:00

As I mentioned in yesterday's post, I like to do lots of internet research and since it's clear no one else is going to help me I have to help myself. So yesterday I had visit number 2 with the Internist who does not take credit cards. He wanted to see me sooner because "he had some ideas." Now a few months ago I would have gotten myself all excited. That would have been very, very bad. He was so smug: "I have figured out what is wrong with you." Apparently, my problem is that I used migraine medicine for too long and now I have a pain syndrome. He says he doesn't know how to diagnose or treat something like this but that he'd like ME TO LOOK INTO IT!!!! To Husband's horror, someone is now advocating that I continue my internet research. Even I think this is absurd. I'm no freaking doctor. He was like "go ahead and send me or fax me what you find before our next appointment but if it's very voluminous don't use the fax because you may jam it." Riiiiiiiight. Let me get on that with my medical library and access to medical journals. Clearly someone is giving Google a bit more credit than it is due. This guy is actually listed as a top internal medicine doc in the US. I'd list the migraine drug but if the guy knows how to google and decides to do a little research of his own this is about all he'll come up with when he tries to search for the drug and pain syndromes.

Everybody wants to make your problem fit into their specialty instead of just admitting that it's over their head and coming up with someone else that they know that may be able to help you. In about a month I'll be more cynical and I'll be willing to say that he just wants to take our money. But I'm not quite there yet since he actually seems to believe his crackpot theory. Under no circumstances will I return for the next appointment unless I have telephone confirmation that he has found out how to diagnose and treat this theory of his. I'm not paying him to give him updates on what I'm doing with the rest of my doctors.

The other side of the paper gown

2009-06-10T16:58:00.000-07:00

I have no living family members who are doctors, no friends who are doctors, and I have always viewed the profession with a healthy dose of skepticism. Husband says I trust none of them (well, I don't). Particularly since - if we're going to have a real pity party - all they've done for me is 30+ useless procedures, tests and needless surgery (bye bye appendix!). I say he trusts all of them just because they're doctors. If someone wearing a white coat examined him and suggested that he needed to have his private parts put thru a meat grinder, he would probably agree. Husband is of the mindset that doctors are right, you trust them and do what they say. Was there some Public Service Announcement in the early 80s that I missed? Maybe when you're on the other side of the paper gown it's easy to say "come on, just trust them" because I'd like to think if Husband had something wrong he'd do far more than just sit back and go with the flow.

I'm busy figuring out how to properly cross-examine my doctors since I do NOT come to the table assuming that they are right. Yes, they know more, they have medical degrees, but as others in chronic pain and fertility blogs have shown, you can become quite schooled in the area of your problem. Husband thinks I'm engaging in some kind of devilish activity with all this internet research and he "wants to know what the DOCTOR says not billy bob on his blog." While obviously we all want to know what our doctors think, the blogging community and message boards are also a critical place for information that doctors just don't and often can't provide. These sorts of forums can tell you what kind of luck someone else had on a drug or with a doctor or a surgical procedure, something that you cannot get anywhere else. In no way is this in place of a doctor's advice but it's a great supplement and can be a great place to start with a list of questions for your next appointment or a way to find the next specialist.

Since my neurologist is recommending an exploratory surgery of my abdominal wall to check for nerve entrapments, I'm clearly heading back to my internet research. I've already had an exploratory surgery so I'm not really interested in having another one but thanks. And, I've had some doctors confirm that I should be looking into the pudendal nerve entrapment theory (thank you internet research). So I have a call with a specialist in Texas and an appointment with a specialist in Minnesota. I have a hypogastric nerve block on Friday so I'll probably post about that. I've had some other previously unsuccessful nerve blocks so here's to hoping this one works. To be honest, they didn't put much thought into deciding to give it to me so I'm not too optimistic. Lupron hasn't worked so I suppose I should be happy that this doesn't appear to be a reproductive problem. It doesn't change the fact that when we start a family is no longer in our hands.

Some new ideas...

2009-06-05T10:14:00.000-07:00

Lupron has done totally nothing for me. Other than make me cry. Last night my pain was probably the most severe it has ever been and I can't help but wonder if that has something to do with being 5+ weeks on Lupron and finally things are shut down and whatever condition I do have just doesn't like that. My pain has seemed to be getting worse on the Lupron so whatever this is must have liked having hormones. As did I.

Thursdays and Fridays around here are always a flurry of internet activity and doctor phone calls so that I don't have to spend the weekend in pain and all depressed that I have nothing ahead of me and no options in terms of relief. So I've got my phone turned up and I'm waiting for several doctors to call me back.

I'm realizing a diagnosis is not looking like it's going to happen where I live. Doctors are too overwhelmed by the sheer number of tests and doctors I've seen and lack of diagnosis - they just don't want to take it on if it hasn't already been figured out. So I need a team approach or a better specialist. Which means: (1) go back to a diagnostic center or (2) pursue what I think could be my diagnosis - pudendal neuralgia a.k.a. pudendal nerve entrapment (PNE). I'm waiting to talk to doctors at 2 locations in the US to see if they are willing to evaluate me in person. I met a woman a few months back that had the same pain, in the same location as me -- which is not textbook PNE -- and it took her something like 7 yrs to get a diagnosis simply because doctors were unwilling to consider someone for PNE that wasn't textbook. You're not a cyclist? Then no PNE for you. It's not a diagnosis I want but at least it would be an answer. So I'm hopeful that one of those doctors will evaluate me in person. Even if it's a dead end at least it can be crossed off the list. I'm tired of sitting in my apartment staring out the dirty windows (that are getting cleaned today!) and waiting for something to miraculously happen.

I'm also going to try to get an MRN (MR Neurography). Like an MRI but of the nerves is my understanding and only done in 3 locations. If I can convince the Neurologist on Monday that this is something he might as well just humor me with, and write the scrip, then perhaps it will add some value. If not, no harm done (it involves no radiation).

Last night I was in the fetal position crying in pain and tonight Husband and I are having dinner at one of the best restaurants in the city with friends for a birthday. Let's just hope I can hold it together.

Diagnosis Crazy

2009-06-03T18:29:00.000-07:00

Apparently in this day and age, some doctors still answer their own phones. I happened to catch one of those doctors this morning. It was a very specialized radiologist and I wanted him to take a look at some of my prior images and see if he could help or point me in the direction of someone that could help. Remember, I'm taking charge now since my current doctors have all but thrown up their hands. So this Doctor is actually willing to see me today and I am lucky enough that his patient doesn't show up so I have time to sit with him in his office.

I'm glad I went because it put to rest one previous test I'd had that turned out to be a dead end thanks to this guy's explanation. But then he says "I'm sure lots of people have spoken frankly to you" and he kind of hesitates and I said "No, actually, nobody has spoken frankly to me so please, please do." He says ok, there's two things. "First, I think you need to see a neurologist." Ok, good, good, got that on the schedule for Monday. Had to beg Hope Killer RE for that one.

Then he leans back in his chair to give me number 2. I already know what's coming. "It's all in my head. Right?" I had been waiting 7 months for this one. Frankly, I'm surprised it took so long for someone to outright say it. I've had it implied before (Second OB-GYN: "you know, pelvic pain can lead to a surgery, go home, sometimes when you know a surgery might happen the pain goes away."). So Radiologist thinks an equally plausible explanation for my pain is that it is all in my head. Now, the man has only met me for 5 minutes, hasn't examined me, knows nothing about me but he knows that I've had nearly every test in the book and they haven't turned anything up. Almost all that's left is crazy.

What's frustrating and sad is that he was actually the nicest doctor I've seen in the city. I'd rather get the "maybe you're crazy" diagnosis from someone that's arrogant or cavalier like the rest of them. Not someone that says "come back anytime if you want to discuss something else." The man even recommended a psychiatrist that he himself used awhile back. I'm a woman in pain, on Lupron, and who came in with a small degree of hope. You accuse me of being crazy (for the second time today - first time was "anxiety") so of course I start crying which only further proves the "crazy" theory. The more we discuss, the more I cry.

What's even more frustrating is when I asked him ok, so let's set aside number 2 for a minute and focus on the neurologist. If the neurologist isn't able to come up with something, who else would you recommend I see or what other tests can you think of that may be helpful. And that's when he says, "that's when I'd really focus on number 2." And that's when I focused on leaving the room.

I can't help but feel utter and complete despair. I don't really care if some random Radiologist thinks I'm crazy. I mean I kind of care but I'm not going to get myself too worked up about it. But he echoed the sentiments I'm starting to hear now: "you've had every test...there's no one else to see..." So it's all coming down to this neurologist on Monday. I guess it's him or the looney bin.

So tonight before bed, just incase, I will say to myself:

"Are you there Potentially Crazy Brain? It's me, Lupron Girl. You've had some serious accusations made against you today. If you're doing this, can you please stop and take me out of all this pain and misery? I'd really like my life back. I've got some big plans and if we're not in pain you'll totally enjoy them too - exercising, running errands, babies, trips, anything and everything you, Mr. Crazy Brain can dream up. If that's not your thing, we can totally negotiate. You want street drugs and benders, we can talk. You've got me on my knees. I've been pretty good to you over the years and I'll really owe you one. But if it's not you Brain, I'm sorry, I didn't think it was either."

Who pays cash for a doctor?

2009-06-03T13:18:00.000-07:00

I've been busy on the doctor front. Yesterday I saw a new internist. He took a thorough history, seemed somewhat sympathetic and here's the kicker -- said he'd think about it and to come back in three weeks. Hell, send me some medical books and I'll think about it for three weeks. Not to sound harsh but the guy is so old he may be dead in three weeks. But, I will give him the benefit of the doubt. The guy doesn't take insurance - of course. And even more nonsensical, they don't take credit cards. Excuse me, what? So Husband has to run to the ATM and take out $650 in CASH to pay the doctor. It felt like some sort of very illicit transaction. We clearly reek of desperation.

So today I'm looking at the invoice to submit to insurance and I see the diagnosis section.

1. Pelvic Pain. (ok, this is fine)

2. Anxiety. (excuse me?!?!?!!?!?)

3. Hyperthyroidism. (this is just a theory buddy but ok)

The anxiety thing really made me mad. Am I frustrated? Yes. Am I annoyed with most of the previous 45 doctor visits? Yes. If you were in pain all the time with no answers, you would be too. Am I some anxious crazy cat lady that needs to be put down? No. And that is how I take the word "anxiety." I think it's insulting to even put that on my diagnosis section like it's something that needs to be addressed right up there with the pelvic pain.

Little did I know what was to come from my next doctor visit.

Do the hokey pokey - a trip to the neurologist

2009-06-01T19:00:00.000-07:00

Saw my first neurologist today. That was some new fun stuff - walk on your tip toes, hop on one foot, touch your toes. Something akin to the hokey pokey. Interesting? Not particularly. Useful? Not really. Better than another pelvic exam? Definitely. He did copy me a nice page from an anatomy book. Not sure what I'm supposed to do with that other than continue to stare at the area where I know my problem is but everyone refuses to figure out. At least now I can point on a diagram instead of my own body. Brought along Husband who was thoroughly impressed with this doctor. That made one of us.

See, this is only Husband's third doctor visit of like 45 so he's easily impressed. Leather chairs in the office - check. Lots of books - check. Doctor wears gloves - check. Medically sounding words - check. Super late to the appointment - double check. This guy must be great! In hushed tones Husband is like "this guy seems to really know what he's talking about." Actually, no, this guy is full of shit.

He is in the category of doctors that are very good at making you feel like they know exactly what is wrong with you by mentioning some words you don't understand, acting totally arrogant and then rushing you out the door while ordering $3500 worth of tests (which I will concede I do need). But all he really said is that I could have a "problem" with my vein, artery, nerve or ligament in that area. That's just NOT good enough. Let's try to get a bit more specific. Avoiding my questions, also unimpressive. Now, doing it in a way that makes me almost realize you're not avoiding them, that's semi-impressive.

Fortunately, I have another neurologist appointment next week. I do think I need the $3500 worth of tests but I'd like to have them with someone less arrogant and hopefully somewhat more impressive. Let's hope this next guy fits the bill and has at least heard of Lupron before. I'm getting really tired of explaining this whole "I'm shutting down my hormones" thing. At that point I'll have the fun nerve testing done and hopefully that will lead to something or at least allow us to finally rule something out.

On the Lupron front, still no hot flashes. I'm thankful but totally puzzled.

RE, the Hope Killer

2009-05-27T19:06:00.000-07:00

Had a pretty awful appointment with the RE today. RE has now been officially renamed Hope Killer. Had my second Lupron shot. The aygestin turned me into a manic insomniac freak so I reluctantly agreed to no add-back. I tried to get Hope Killer to confirm that since my pain was worse on Lupron, that must mean my pain is gynecological in origin...but...much to my surprise he says no, that could also mean it is neurologic.

I ask him what will I do if the Lupron doesn't work and Hope Killer's response is that I will just work with the Pain Clinic at that point because "there's really nothing more to do." Excuse me, what?!

But "you can still go ahead with a pregnancy." Umm...again, what?! Did you just miss the last 7 months? Isn't that like malpractice or something? Seriously, if I had a kid right now you'd have to call child services on me because there's no way I could take care of it in this condition. And should you really be advising me to just run off and have a baby when you don't know what's wrong with me?

Then I asked him about my calcium intake since he's killing my bones (in addition to my spirit) and he says I can have up to 1500 mg/day but that it really helps if I'm walking and doing weight bearing exercises. Ok, so now I'm REALLY crying. At this point the door is open and people are listening and I said, "do you not get it? I cannot do any of those things! I have had no life for months. I have zero quality of life and you are telling me that if Lupron does not work, there is nothing more I can do to get a diagnosis and that I just need to work with pain management." He just stared and me and was like well, ok, let's get you your shot. Awkward! So you'd think we'd part ways with a little, "don't worry, we'll figure this out" or a "I'll help you get to the bottom of this." Nope. Silence. And he made sure to avoid me on the way out. I can only IMAGINE, actually I cannot, because it is too awful to imagine, what it must be like to have IVF with Hope Killer. Those poor women.

So, since Mystery Diagnosis is now one of my favorite shows, I've decided to utilize some of those tactics. Those people never diagnose themselves so I am going to give up trying. I mean there are only so many ways you can type "pelvic pain" into google. So on Mystery Diagnosis, the patient always goes to a couple of faceless total dud doctors (like Hope Killer) who tell you you're fine or that everything is in your head and then in 95% of the episodes the frustrated patient hits the internet and just googles themselves a new doctor. They go to the kind grey haired new doctor who ends up diagnosing them! Happy ending. So, I have now googled myself into 3 new doctor appointments. I mean realistically nothing will come of them but I'm not going to let Hope Killer tell me that it's him or a life on drugs. No freaking way.

Shapewear

2009-05-26T14:41:00.000-07:00

Since I have had a really tough weekend in terms of pain and I needed to get a bachelorette party/lingerie shower gift for a friend, Husband was sent out on this mission. This is somewhat creepy but you gotta do what you gotta do.

So I sent him to the store with a list of acceptable items from the website, none of which they had. He calls me and he's walking around with some poor woman helping him. I have the Lupron equivalent of zero patience (so that would be -20 patience) and I'm yelling "FIND SOMETHING CUTE AND FUN AND SEXY AND BUY IT! OK?! Pretend like you're shopping for me!" He's getting scared now. And then he see's something, "oh I've got it, this is perfect." I say "ok, great, what's the brand?" "Yummie Tummie."

I hear laughter in the background from the sales lady. She clearly cannot control herself and I can literally almost hear her shaking her head and leading him away as she's saying "that's shapewear, oh no, no, no...." SHAPEWEAR!!!! Maybe I just haven't been shopping in awhile and they've made some serious advances in shapewear but I think that's totally bizarre. I'd wonder if he has some sort of shapewear fetish but last time I put my Spanx on he thought I was going for a bike ride.

45 Shades of Grey

2009-05-25T08:21:00.000-07:00

I went out yesterday. Left the apartment like a normal person. Went to Starbucks, walked around a flea market (almost made some drug induced purchases) and then picked up some paint samples. Sitting around for 3 months staring at white walls makes you want to paint your apartment. Grey. Now, a psychoanalyst may say that means I'm sad but I would say that just means I'm very, very hip or perhaps on too many drugs and very, very sad indeed. But, let's go with hip because right now I've got like 45 shades of grey to pick from.

Now, the only reason I did these crazy activities semi-against my will was because my patient, ever hopeful husband keeps asking every Friday night "what are we going to do this weekend?" Before every weekend he gets amnesia that we're not some normal couple who go out and do normal things on the weekend. Hello? Remember last weekend? I was in bed. But, it's a Holiday, so I thought I'd play along! I timed it right, took my drugs just as we walk out the door. And I thought I did ok. But shortly after we got home, I was in such excrutiating pain, the only way I could describe it to him was that if the remote control was a needle and it could have helped me, I would have jammed it into my pelvis. So, I think that's it on the outings for a bit.

But, it calls into question all the Pain Clinic meds. Hello guys? What are you really doing for me other than killing my liver? You're certainly not helping with pain. But the Methadone may and that is still an option for my next visit along with trying another nerve block. Though with the initial Lupron surge worsening my symptoms I really feel like I should just drop the pain clinic all together because I don't think they're going to be able to give me any relief as this would seem to be a gynecological problem. But who wants to be a quitter? Especially when this is my only doctor that's actually in-network and doesn't require his full fee up front!!

No doctor wants to tell me SQUAT. At this point all I'm looking for is what specialty I need to be seeing. In my own mind, It's got to be Gynecological since the Lupron flare worsened my symptoms so dramatically the first two weeks. Now whether or not the Lupron ends up helping with my pain is another story but I at least know I'm working with something that is gynecological related. That would seem to make sense, no? Because I've got family members suggesting seeing other specialities right now but that just doesn't make sense - if it's a nerve problem or a vascular problem how do you explain a worsening of symptoms based on a rise in estrogen??

It'll be four weeks on Lupron this Thursday.

Looks like the SOB was right!

2009-05-23T13:40:00.000-07:00

So the RE advised me to stop the add-back (Aygestin) and see if that helped me with my Lupron insomnia. I thought that was totally counterintuitive - hello, no hormones? How's that going to help? But apparently I had gotten over confident in my medical abilities. So I went ahead and skipped the add-back yesterday and took an Ambien yesterday afternoon (I was totally exhausted and was hoping for a little nap before my brain disintegrated) and I actually got some sleep! Like REM sleep, there was dreaming! That arrogant SOB (that would be my RE) was right!!! I took some more Ambien to sleep last night and I slept another couple of hours. Amazingly enough, I didn't pop up at 3 am like some kind of meth addict ready for a cleaning spree. So that's definitely a change.

Now, I'm not really willing to go 6 mo. on Lupron without add-back but maybe we can figure something out. So I'm hopeful that this sleep situation can get turned around.

Only downside is I think I was so delusional from lack of sleep that it was almost dulling the pain. But maybe a few nights of sleep can get me on track and help with the pain.

Thanks for all the ICLW well wishes!!

A Side Note - Melanoma

2009-05-22T19:05:00.000-07:00

Since my blog is getting so much activity via ICLW I thought I'd use this chance to tell a quick story about part of my journey in seeking a diagnosis -- a part that veered off into unexpected waters.

After a negative lap for endo, I spent a week at a great diagnostic center in the US seeing tons of doctors for my pelvic pain. But, on my first day there, an internist during a thorough physical noticed a mole on my abdomen and immediately said woah you need to get that biopsied and removed. Note, lots of docs have seen this abdomen and nobody has said a peep! The derm, who looked about my age, did NOT think it needed to come out and actually asked me what I wanted to do, but since the orders from the higher up Internist were clearly to take it out and I was kind of like do whatever, I've already got scars from the lap, she did. So on the second to last day there, I'm talking to the Internist about how the trip basically gave me no answers, Internist remembers the pathology report that we're waiting for on the mole and calls the lab, she looks at me while holding the phone and says, "here's why you came." Turned out to be a severe atypia - which is a pre-melanoma. So I had it re-excised the next day and another one excised that had looked similar (it too came back moderate atypia). While this isn't a sure thing that you're going to have it turn into melanoma, they seemed pretty sure and gave me stern warnings that I'm forever at a higher risk and should be checked thoroughly every 6 months.

I always figured if I came out of a surgical procedure room with a 3 inch scar under one breast and a 1 inch scar under the other that I'd be rocking a kickin' new bod, but I guess that's not always the case! So, despite all the magazine articles I'd read on melanoma and what to watch for -- here's the one I missed -- if all the moles on your body (and I don't have many) are one color family and then you have a one or two that are much darker or different colored TAKE NOTE! Go see a derm. Hope that helps somebody.

Anybody got a horse tranquilizer?

2009-05-21T14:50:00.000-07:00

Nothing is every simple with these doctors. Getting an MD is clearly a test of endurance not organization, sensitivity or intelligence. Since the Pain Clinic's recommendation (or well, actually my own) to take Ambien (for my Lupron insomnia) led to ZERO sleep. Yes, literally and amazingly, zero. I decided maybe the person who put me in this misery would know what to do. I call the RE at 9am on the dot. Multiple phone calls later they call me back (with an audible sigh of course) - they clearly know my name now - the semi-annoying girl who isn't having IVF and who nobody knows what's wrong with.

Apparently RE is busy doing IVF but there's a mysterious doctor on-call (fascinating, this is the first I've heard of this person) that I could see but only if RE says it's ok. Guess he doesn't want to lose his cut of the required up front dough unless it's a real emergency. So she'll get back to me. They are playing games with my quickly deteriorating mind. Do they think I will just stop calling?

I actually think the Lupron could be helping me but when you can't sleep you can't possibly get better. Right now I've got pain on both sides that's getting worse and worse and I can guarantee it's because I have gotten like 4 hours of sleep in the last 72 hours.

Any suggestions for something stronger than Ambien? Like a horse tranquilizer for humans.

To the sleep deprived - Beware!

2009-05-21T07:05:00.000-07:00

Well, give a Lupron crazed woman a paintbrush....2 Tizanidines, 1 Clonazepam, 2 Topamax, 1 Mobic and an Ambien later...and this is what you get. The pygmy wearing circus clothes is my nephew. This is a freebie from someone on drugs, what do you expect! And yes, I realize the political incorrectness of the pirate theme. And after exchanging an email with a friend, I did contemplate going ahead and making this a true to life pirate motif, turning my nephew into a Somali pirate tugging a little dingy with an AK over his shoulder but I decided that may not have been what my sister had in mind.

But back to the more important question at hand, all the drugs, why

no sleepy time? Excellent question Luprongirl. Excellent question indeed. The dog is asleep. My husband is asleep. The trash bags are covering the windows. I am pumped full of sleep inducing drugs. It's MUTINY! They should be punished! But how can you punish something so darn cute?

Gotta Love Moms - always thinking outside the box

2009-05-20T05:36:00.000-07:00

Mothers, gotta love 'em, mine is worried not about the drugs, not about the pain, not about the sleep issues, not about the fertility issues, she's concerned about...wait for it....my gas stove. She's concerned that in my "current state" (I think that's code for crazy) I'm going to have on long sleeves (maybe that's code for a moo moo). She trailed off then, like to let the importance of it reeeaaaalllly sink in. So apparently I'm going to catch myself on fire. Is she crazy? Clearly I need to share the blog with her because there is ZERO cooking going on in this place.

Unless the dog has grown thumbs that I don't know about (and is now wearing my long sleeved clothes - that bitch!) and is whipping herself up a little grilled cheese lunch, nobody is turning the gas stove on. I don't think you can catch yourself on fire with my current lifestyle of laying in bed eating total cereal and chocolate bars unless you're wearing polyester pajamas and lighting matches under yourself.

I will ask Mom to look into it though.

Useless Doctors - Updated! I am a dr. now!

2009-05-19T18:55:00.000-07:00

Since I recommended to pain clinic doctor that perhaps he should put me on Ambien since I haven't slept in about a freaking month and I'm about to start painting pirates on the walls and eating my hands, apparently he took my recommendation and called back and said that would be fine. Gee, I'm glad I'm suggesting drugs to them now. In that case, why don't they go ahead and send me a prescription pad and I'll take care of my medical care going forward. Save me the co-pay, cab fare, and added pain in getting to the office.

Useless Doctors

2009-05-19T16:54:00.000-07:00

While I could write 1000 posts about useless doctors, here's one to throw into the pot. Now Oprah would be very, very upset with me. Just as I'm finishing the last post about how the Pain Clinic is going to try to just up my dosage or something ridiculous instead of actually helping me because they don't understand that their drugs don't work against Lupron, I get an "Unknown" call. Always a Dr, I scurry to get my pen and pad ready. What is it that Oprah says about these things in her magical instantly best selling books - the law of attraction or something?

Well, my negative blog post has just attracted me an english as a third-language underling Dr. who is an idiot and decided to NOT call my RE, to NOT look up in his little medical book what Lupron is and to just call me and tell me that I should just up the dosage of one of my drugs. The weight loss side effect one, so I'll give him a little love for that. He's going to call my head honcho pain dr. and get back to me "maybe tomorrow." Gee thanks for all your help. He did suggest that maybe since the Lupron was causing the problem maybe I should talk to that doctor about "adjusting the dose" or "going off of it." Ridiculousness! I tried to play Dr. with him - can't you just let me take some Ambien? I was on that before and I was sleeping just fine. Maybe God is punishing me for supporting sleep deprivation as a method of torture.

Sleep Deprivation and Pirates

2009-05-19T16:13:00.000-07:00

I find myself posting way more about my sleep deprivation and insomnia than about my pain but I guess that's just because it's a new crazy symptom and I've had the same boring symptom that everyone around me is kind of tired of hearing about....so, I'll let you strangers hear about the new crazy fun insomnia that makes me say and do weird things.

So after an 1 and 20 min of sleep Sunday night I forced myself to stay awake all day Monday, went out and bought some floor cleaner and art supplies (these are things crazed sleep deprived people do that don't normally paint or care how their floors look) and stayed up all day thinking I would prove to myself and everyone else in my family that I'm not going to get a good nights sleep on Monday night just by doing this. It's the hormones people, not that I have my days and nights confused!! I'm not fresh off a transatlantic flight from China, I have a hormone problem! And alas, I was correct. 3 and a half hours after falling asleep I was wide awake and off painting pirates. Literally. Late night TV and I decided we needed a trial separation after I found myself actually watching the "teach your baby to read" infomercial and then later discussing the merits of it with my husband (we have no baby). Time to find a new hobby. So I'm now painting pirates and pirate ships for two of my nephews. Photos to come eventually...They're actually quite cute.

My husband woke up and I'd been working on this pirate ship for hours and was staring in serious contemplation at the background of a painting for a 3 yr old and he said he thought I was acting like I'd been "commissioned to do a portrait at the museum of modern art" and that I was acting "weird." So, needless to say, he advised I call up my doc and have a chat about the sleep issues. He was right but I'm a bit far gone to see that clearly.

I am far more blunt on minimal sleep so I called up the pain clinic and got the schmuck that answers the phone and was like "Listen dude, let's make this easy, you get one of those doctors (who knows absolutely nothing about Lupron) but before they call me (and put me on some higher dosage or something equally useless, have them call my RE, he's in the same building, because I'm not having a problem with your perfectly nice (yet so far utterly useless) Pain Clinic meds I've having a problem with this drug from my RE called Lupron, Lukron?, no that's L-U-P-R-O-N. It makes me not sleep. NOT SLEEP! Ok, thanks."

Lupron - Day 18

2009-05-18T05:55:00.000-07:00

So, to recap for those interested in the Lupron aspects of this blog - I'm on Lupron Depot 3.75 (the once a month shot), this is day 18 of the first month. I've been taking Aygestin add-back since day 11. I take a women's multi-vitamin and that new Calcium & Vitamin D supplement with something for Bone Density (newly advertised on TV).

The first 7 days I was on my birth control pill. I got my period on day 11 at which time they had me start the add back. I've had a little bit of bleeding every day since then. Since day 11 I have had serious insomnia. Sleeping about 2 hours a night. I wake up sweating so I think if I was sleeping like a normal person I'd probably have night sweats. I have mood swings but not like what I was anticipating.

The first two weeks my pain doubled in intensity so my sleep issues were getting worse at that point but not insomnia level. Sleep's been a problem since the pain began months ago. My pain level is still high, probably just slightly higher than the original level. I'm hungry all the time but nothing really tastes good - this may be from the sleep issues though. No hot flashes, no joint pain yet. No headaches and I have been a 6-yr migraine sufferer so I was concerned that this would be a side effect for me.

Joy

2009-05-17T04:53:00.000-07:00

Is it possible to be in constant pain yet feel joy? I don't mean happiness, I mean joy. That kind of joy that springs up unexpectedly, a memory, setting off for a new adventure, that feeling of laughter that can't be contained. I haven't managed it in ages. And for someone living with a person in chronic pain, I know Husband hasn't managed it either. After awhile of this you start to question what in the hell you were doing with your life before. Why wasn't I at the Met or checking out Coney Island, having a picnic in the Park, taking in a photography exhibit? I'd sure like to do something, anything now.

Though most of the time things are a drug induced haze, I've got nothing but time on my hands and things are starting to come into clear focus. My husband and I met and fell in love when I was a law student living outside the city, we had great weekend visits and took vacations and talked on the phone for hours. But once we were both in NYC and working at the same time, we weren't building a life together anymore, we were simply surviving until we could someday get out of here. And someday may be a long way off. Both of us stressed out to the MAX, me with a job I can't stand, him with a job that requires nearly 24 hr/day attention and major added family stress. While it's sustainable I suppose (though leads to a certain early death) and it's a way to save up some money, it's no way to actually live a life with happiness or build anything of substance together. And so will I still be a lawyer when all of this is said and done? Probably not.

Guess we weren't on the same page...

2009-05-16T07:31:00.000-07:00

I came into this marriage believing that a couple should be married awhile before having kids. It wasn't some hard and fast rule, I just figured it made some sense and I wasn't ready yet anyway. To my husband, I learned last night that apparently it is a hard and fast rule that will likely only be broken by a "now or never" exception from some doctor playing God. I wasn't planning to want to try for a baby in the next year or two but things change. When that part of your body hurts this badly for this long, things change, you change. I thought my husband and I had been on the same page - perhaps seeing my illness as a lucky clarification of our priorities - as I learned last night, we were not on the same page. Things are still playing out and I may not even have a reproductive issue (though with the Lupron making me worse, I'm finding that harder to believe), but either way, the last six months have irrevocably changed me. I think back to many years ago when a death in our family occurred and on that day, life never felt shorter, more unpredictable, and simply too unfair for plans to ever be set in stone. To wait until the "right time" when we've already been given the gift of knowing that we may face problems in conceiving...foolish isn't even the right word. He wants things to be black or white and they're not. Nobody is going to say to him - "you have to have a baby now or you never can." Because he's taken that position, there's really nothing to discuss. My husband thinks I'm always assuming the worst - I'm not - I'm actually fairly optimistic. Beaten down but optimistic. I think my husband is either naive or in denial. I just can't explain it otherwise (or don't want to think of the alternatives). To know your wife is in this much pain and to have doctors talking about taking out an ovary if the Lupron works or going straight into IVF (when they thought we were on board about having a baby) for him to take this bizarre hardline approach has shaken me to my core.

Day 15 - I guess it's working, now what?

2009-05-15T07:10:00.000-07:00

So today will be day 15 on Lupron, over the last 2 weeks my pain has intensified beyond belief and right sided pain became right and left sided pain, i've become an insomniac, somewhat of a night sweater, and now a total and complete bitch. What does all this mean? I have no idea because I paid $200 for 15 minute consultation with my RE where I didn't really ask the important questions. You reach a point where you're just desperate to get help, frustrated by how long it takes to get anything done and if I invested the emotional energy in questioning doctors about each new hypothesis and treatment plan I'd be emotionally bankrupt. But that was clearly a poor choice here. I'm all about patient empowerment and knowledge and asking the right questions of your doctors but sometimes it gets hard and overwhelming and you just get beaten down. But once it was game time and I had the nurse about to inject me, I tried to get her to tell me "ok lady, if the pain gets worse at first, does this mean we can confirm I have a gynecological problem, that we're on the right track?" And she wouldn't answer. I swear, there's a big stamp on my chart that says PATIENT IS A LAWYER, GIVE HER NO STRAIGHT ANSWERS. My husband thinks maybe they just missed the endo. I'm not convinced. The RE is enough of an arrogant SOB who was himself convinced that I had endo that I'm pretty confident he looked long and hard for it. The only other theory is some kind of mysterious functional problem with the ovary...followed up by a "oh, we'll just take it out then..." Hello, could I have a bit more proof please? Does this so called functional problem have a medical name? And now that I'm having left sided pain, you gonna go ahead and take the left one too for good measure? If I wasn't so tired and bitchy I'd probably be worrying about all of this but I'm not going to until I have some pain relief and some real proof that the Lupron is doing me some good. Even though I'm scheduled for another nerve blocker in July, I just find it hard to believe the Lupron would have made me worse if I had some nerve or other non-gyn problem.

As for the bitchiness, that's a new symptom in the last few days, I'm guessing that's from the hormone drop. So I'm also guessing it will only get worse from here. Fortunately for the dog, she does not speak or go to work and abandon me. So we're still thick as thieves. My husband, who speaks and leaves, not so lucky.

Babies

2009-05-12T14:17:00.000-07:00

When my husband and I got married, we knew we wanted babies, hadn't quite negotiated the details of when, but we knew it was important to us both and would be in the next few years. Then my pain started and we eventually came to think it was endometriosis. I've been ready for a long time and this pain was like a message saying "what are you waiting for?" "why are you taking your fertility for granted?" I've wanted nothing more than to be a mother my entire life, so why am I toiling away at a job I don't even like - what for? We have the money. Until we're in a bigger or better apartment? Until more of our friends are married or have kids? So we can take a few more vacations? Not important to me. So, now we're really just waiting to figure out what's wrong with me, get rid of the pain and then start trying. That's what keeps me going. The idea that I'm going to be pain free someday soon, will lose the 10 pounds I've gained from laying around the last 6 months, get myself healthy and try to make our family happen.

When my RE first talked to me about Lupron he said we could do it for 3 months and then go straight into an IVF cycle to help prevent the pain from returning before we're able to get pregnant naturally (assuming we can). Of course I go back for another appointment before the shot and suddenly he wants me to do it for 6 months. I'm not on board yet for 6 months but we'll see. The uncertainty of my own medical situation is annoying to put it mildly but the idea that I'm now just sitting around waiting to get better until we can start trying for our family is incredibly frustrating. But, it's given me time to get mentally prepared. I now realize the struggle we may face with infertility and I'm ready to fight that battle if the day comes.

Insomnia = not invisible = disturbing to husband

2009-05-12T12:09:00.000-07:00

So last night I wake up at 1, wake up at 2, and finally I'm wide awake at 3 am, not "worrying about my condition" as doctors always like to think when you say you can't sleep - No, I was thinking about how I had about 5 hrs to go until my husband got up and I could wash the sheets. My side had a bit of a run in with chocolate. That's the downside of a bag of cookies in bed my friends. While on a leave of absence I've become full-time laundress (though I'd totally be fired for falling asleep on the job most days); part-time baby show watcher. Since I plan the loads in advance I'm thinking I'll do the sheets with my husband's darks from yesterday and my PJ pants and then after that I'll do the white blanket from the bed. It's the only thing I do around here that's useful.

So this morning my husband wakes up to find me up and in the living room again and he is totally disturbed! "You should call your doctor first thing, you should stop taking your medications and go back on Ambien." Ummm....brilliant idea but see, I have this other little problem, called pain. Remember Genius? The thing all those medications are for? His heart is in the right place but I just wanted to laugh. He was so freaked out to find that I'd been up most of the night again - he put on his problem solver hat. But yet, in all the months that I've been in so much pain and we've been seeking doctors and a diagnosis and I've been on all sorts of side-effect inducing medications, he's never once put on his male fixer hat for any of that. How about a little research into the new drug I'm starting or the new nerve block I'm going to have? Nope, because that's all part of something that is invisible. He 100% believes it, but it's still invisible. Finding your wife wide awake at unusual times, not invisible.

And then the kicker, "Could it be all the cookies you're eating?" Coming from a 27 year old man with a legit belly, no, husband, I don't think it's the cookies. Do they keep you up at night?

More Drugs Please Sir

2009-05-11T15:32:00.000-07:00

Never did go to sleep last night so I showed up at the Pain Clinic feeling pretty awful. They're going to add another drug to the mix - Topamax. Possible side effect - weight loss! Gloriousness! Maybe that will counteract the bag of soft batch cookies that I just bought and consumed. Emotional eating or Lupron? Who cares. I've already taken Lyrica and had some wicked side effects - walking into walls, not remembering what I was doing or saying or watching 30 seconds before. Hopefully those won't be the same on the Topamax. If this doesn't work they're suggesting Methadone next. That was a little surprising to hear and I've heard about how addictive it is but that sure sounds enticing since I know it is strong - maybe it could help. Also going to try another nerve block. But of course the doctor is booked until July. Absolutely absurd. If I actually thought that nerve block was going to help me (this will be the third one), I'd be really pissed. Instead, this is just filed away in the absolutely typical category. Original pain is still in full force from the Lupron. I tried taking my add-back this afternoon incase that's what kept me up last night. I don't get out too much but I do spend a fair amount of time sitting at CVS waiting for my drugs to be filled. That place is almost as unpleasant as a doctor's office and no matter when you go in they always try to convince you that you don't really need your drugs until tomorrow. But, I always outwait them. Me and the homeless guys checking their blood pressure for free. Gotta love NYC.

Lupron and Insomnia

2009-05-11T05:35:00.000-07:00

Let me go ahead and add insomnia to the list of side effects I'm feeling. I'm even taking drugs to help me sleep and those don't even work anymore. I'm now realizing it's the Lupron and not that my tolerance to the drugs was changing. So, it's now 5:35am and I am still awake!

The frustration of invisible illness

2009-05-11T00:04:00.000-07:00

So I've been putting my B&N membership card to good use and I figured I'd post about some of the books I've read over the last few months. A great one is The Body Broken by Lynne Greenberg. I can't rave enough about this book. The memoir of someone that struggled to find a diagnosis, tried different treatments, just generally struggled with pain and continues to but found a way to make her life work. If you're feeling alone in your illness (whether it's pain or not...but particularly if you're suffering from an "invisible illness"), read this book.

I'd never even heard the term "invisible illness" until I started browsing the B&N website but there's some books out there about it. It's a funny thing -- when I had my laparoscopic surgery and they took out my appendix, people could understand that and suddenly there was sympathy and understanding. When you have a broken leg or a splint on your wrist, people can understand that. But when you look fine, people expect you to BE fine. It took my husband awhile to get there too. My husband and I have friends who invite us to go out and do things -- and it infuriates me. I should be happy that despite my isolation at home, I'm still remembered and invited out. But instead, I find it absolutely infuriating that they can't understand that I am in pain and while I'd love to go see a play or go on a pub crawl or take a vacation those are things I just can't do. Those invitations have made me feel lonely beyond belief. My husband and I do go out to dinner on the weekends - it's when I break out of my jail and I look forward to it even though it makes the pain a little worse. So one night we went ahead and had dinner with another couple - and the entire time I just felt like a big fraud sitting there pretending like things were fine, like I was enjoying myself. They eventually asked how things were on the medical front and I tried to explain the frustration of still not having a diagnosis, not being able to work right now, not being able to do ANYTHING. 5 minutes later they're proposing going on a pub crawl in Brooklyn. WHAT?! I literally went home and cried. I don't know why it bothered me so much. Those are things that I just can't do but I have to just get over the fact that people don't understand.

Day 11 - Cravings

2009-05-10T22:38:00.000-07:00

My pain has increased and is now on both sides...which I take with optimism as a sign that the Lupron may be working. I'm having major sugar cravings. I ate a pint of ice cream at 3 am. I've eaten seriously 1 lb of Hersheys in the last two days. Not normal behavior for me. I have had chocolate by my bed every night for the last few days. Still have the thirst. I had an awful cold a few days after the injection and I'm still trying to get over that. Maybe my immune system was down and the Lupron just put me over the edge. I got my period today so my Dr. has me starting add-back therapy now. Only real side effect so far is minor - feeling hot and then cold, like my body can't quite regulate my temperature. I'm emotional but I think it's the frustration, isolation and uncertainty that goes with my situation rather than the Lupron...but I'm not sure.

Since I have no real diagnosis and this Lupron is simply a "test" - I'm still seeing a Dr at the Pain Clinic in hopes of managing my pain. I'm on drugs now which aren't really helping other than making me feel like I'm on drugs. I'm going in to see my Pain dr. tomorrow at which time I'm guessing he'll want to increase my meds. His intentions are right - put me out of pain (though at this point it's difficult to believe some drug cocktail is going to be the cure) but I also worry that if he's able to help me thru drugs, I won't know if it was the drugs or the Lupron. And, at this point, I'm tired of being on different medications. I just want to be better and off of all these drugs. Back to myself.

Day 4

2009-05-03T12:15:00.000-07:00

THIRST!!!! I woke up with a sore throat today and yesterday. Water doesn't seem to make it better but I'm so tired and drugged up on other stuff I'm taking that it's hard to get enough water down. I'm noticing my skin is really really dry as well. More water is now my mission. I'm still waiting for the crazy to set in.

Day 2

2009-05-01T14:04:00.000-07:00

I had the Lupron injection yesterday. It will last for 4 weeks. The injection site was sore but otherwise feeling the same.

Background

2009-04-30T12:05:00.000-07:00

I've been dealing with chronic pelvic pain for six months -- unable to get a diagnosis, the internet has been great resource for me. But, as I'm about to start my journey on Lupron today, everything I've read on the internet about Lupron is pretty terrifying. I'm hopeful that the people with good experiences are just off living their lives pain free and aren't posting about it on the internet. Or at least that's what I am telling myself. So, I wanted to start this blog (as others have) to chronicle my experience. Hopefully it will be a good one and will give some hope to others who are deciding whether Lupron is worth the risk. But either way, the more information that's out there for women like us, the better.

For me, even with all the horrific things I've read, this is where I'm at and this is worth the risk if I can be pain free. I'll post later about how I got here, the drugs I've tried and tests I've had but the big difference from me and lots of others on Lupron is that I don't have endometriosis (at least according to what I believe was a very thorough laparoscopy by a reproductive endocrinologist who specializes in excision surgery). So, for others with undiagnosed pelvic pain and a negative laparoscopy, you may be in the same boat as me....where there is even less information available for us.

The Lupron has arrived by FedEx - I'll be calling the nurses at the office to go in today and get the injection. The journey begins.