Lupron Status

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.