Endometiosis is so much more than just a painful period. Back when I first had it there was just about nothing they could do and Ibuprophen was still a prescription. So that left asprin and a few other things. It was awful. Times have thankfully changed and hopefully your daughter will be able to get relief. I was bent over, throwing up, and had chronic pelvic pain. It affected my intestines, my bladder (I still have problems with the bladder) Unless you have had it, it is just so difficult to imagine what it is like.
[QUOTE=tradewind;5464773]
Endometiosis is so much more than just a painful period. [/QUOTE]
And it’s not even consistent. The only time I ever had relief from pain was during my period and right after. That was the only time my hormone level was low enough and steady enough not set it off. It would go crazy the whole rest of the month. I’ve come to the conclusion that it’s just pure evil.
I have a love/hate relationship with it right now. It does wonders for the pain, but it comes with its own laundry list of side effects.
I was on it for migraine prevention and just could not tolerate it. I tried, but couldn’t do it. The good news is the side effects I went through went away within hours after my last dose. I wonder if neurontin would work for you with less side effects? Something to think about if you decide you can’t hang with topomax.
The side effects have gotten better over the past several days. I’m not sleepy anymore and haven’t had as much trouble concentrating. That was the worst. I would start to say something to my husband and then completely lose track of what I was going to tell him. I’m only taking one pill a day so far, and it’s not quite enough to cut out the pain. I’m afraid to take two. The doctor told me I could take as many as four. :eek:
I had the opposite problem. I couldn’t sleep and when I did I remembered all my dreams in great detail so I would wake up feeling like I stayed up all night watching movies. I remember driving two horses in the trailer. I was looking in the mirror trying to figure out which horses they were so then I could figure out where I was taking them. On the plus side, I lost about a pound per day!
[QUOTE=Laurierace;5467210]
I had the opposite problem. I couldn’t sleep and when I did I remembered all my dreams in great detail so I would wake up feeling like I stayed up all night watching movies. I remember driving two horses in the trailer. I was looking in the mirror trying to figure out which horses they were so then I could figure out where I was taking them. On the plus side, I lost about a pound per day![/QUOTE]
Freaky. At first it knocked me out like 5 minutes after I took it.
Now, the weight loss side effect would be more welcome if I wasn’t already down under 110 from 4 surgeries.
But, yeah I lost a pound already, and I don’t know how. I ate three meals a day - but then again with the whole memory loss thing, maybe I just thought I was eating. 
No endo issues here, but a long history of migraines. I recently had another conversation with my doctor about what else I can try for prevention, and he suggested trying Topamax. I declined because I’ve heard there are a lot of side effects, one one of the biggest complaints I heard was weight GAIN. Not something I wanted to mess with since I’ve been trying to slim down.
What were some of the other side effects you both had?
No Topomax is definitely known for weight loss. In fact they did studies on the effectiveness of prescribing it for that reason alone. Not sure what came of that. But it’s also known to be sedating and had the opposite effect on me there. I was on amitriptyline for migraines for over a year but went off in favor of topomax due to weight gain. I couldn’t tolerate the topomax and now am taking nothing. I guess my head just reset because I haven’t had a migraine in months. I did take high doses of magnesium for a few months, that could have been the cure. Not questioning it, just enjoying the reprieve!
Definitely weight loss. I also have fatigue, difficulty concentrating, and some odd vision/mental issues. I wrote something down once, walked away, came back and couldn’t recognize what I wrote. It just looked all scrambled to me. A few seconds later it looked fine again. I’ve typed some things that I thought looked fine that were actually gobbledygook.
So, for me, it’s either this weird mental state or terrible pain. 
He just started me on amitriptyline 2 weeks ago and I’ve gained a couple pounds that - based on my meals and exercise - I shouldn’t have gained. Also some weird dreams. Now I’m reconsidering trying Topamax.
Thanks to you both for sharing.
Well in the defense of amitriptyline, I earned the extra weight. I ate like I was in my first trimester of pregnancy! I was eating stuff I didn’t even like by the boatload. Bags of Barbeque potato chips-yuck. Chili dogs-yuck. So perhaps the med caused the cravings or lack of willpower or whatever but I did actually eat more than I should as opposed to gaining weight for no reason. If you are not having cravings I would stick with the amitriptyline because topamax can be the devil in a pill form.
I was diagnosed with stage 4 endo in 2006 after years of living in pain… Since then I’ve had 4 surgeries and while they have helped for a period of time (< 6 months) they have not provided long term relief. The only thing that has provided me with a normal relatively pain free life is a prescription time-released pain med. My insurance decided it did not want to cover the endo because it is a chronic condition and my OBGYN doesn’t really understand the disease and still thinks a hysterectomy will fix it. well the truth is if you have involvement of major organs such as intestines, colon, bladder etc a hysterectomy won’t help. There is a deep implant removal surgery done by a Dr. Katayma (sp) in NYC but it is very expensive and most insurance companies only cover a fraction of the costs. However the research I have done on the procedure shows that he can remove the implants from major organs and separate adhesions thus relieving the pain. It might be worth checking into the surgery.
Also I did not know endo could be diagnosed by a biopsy… My understanding is the only way it is diagnosed is by laproscopy. I would get a second opinion from an endo specialist.
The pain and awful feelings associated with endo are truly debilitating and so few people truly understand them. i wish you the best of luck in getting relief
Re: the above: hysterectomy + oophrectomy + no replacement hormones for at least a month will cause the implants to die off.
I will say that the hysterctomy got rid of the majority of my problems after living for years in absolutely excruciating pain. I had intestinal, bladder involvement as well after they screwed around with me for over a decade. I need a bladder lift as that is still out of shape from all the endo that was around it for years. The rest of me is relatively back to normal. I felt better after the surgery than I had for the five years before. I actually sent that surgeon a dozen roses as she gave me back my life. I am eternally grateful to her for stepping up to the plate and doing what should have been done years earlier. My life was once again my own. I no longer had to schedule things around my period and after awhile try to cram everything important into the lousy 3 days a month I felt somewhat ok. If kids are not in the works or already done with I would certainly not discount it.
Forgot to say that they spent several hours removing the stuff that was on my intestines, bladder and other areas of my abdominal cavity that were affected. If allowed to, it can spread all over. I highly reccomend finding a doctor willing to pursue it aggressively and not poo poo it for over a decade as was done with me. Keep looking until you find the right doctor, one who is REALLY interested in helping, not just stringing you along.
[QUOTE=FalseImpression;5464713]
Very timely thread as my daughter has been bent in two on Thursday and last night. It only happens when she has her period though and had to change her BC in the last month (just change the ins and outs dates of her ring). Otherwise, the pain killers worked but this time the pain was excruciating. She was doubled over, clammy, crying and felt sick to her stomach from the pain. Ugh!
I had painful periods but nothing that would stop me from going to school/work. If I could I just stayed in bed and slept the day away (which is what she basically did on Thursday).[/QUOTE]
I live my life this way:(
[QUOTE=JA;5473348]
Also I did not know endo could be diagnosed by a biopsy… My understanding is the only way it is diagnosed is by laproscopy. I would get a second opinion from an endo specialist.[/QUOTE]
If it’s outside of its usual habitat, indeed they can. Mine is not visible. It was found when they biopsied a fibroid tumor.
[QUOTE=cheektwocheek;5475007]
I live my life this way:([/QUOTE]
(((HUGS)))
I can’t seem to get the doctors to take me seriously now - or am I just being too impatient? What do you think?
Since last week, my condition has degraded to what I consider to be a critical level.
The Topamax doesn’t do enough anymore - I didn’t know I could get used to it! - the Percocet only puts me to sleep but can’t knock out the pain.
I have increasing numbness and tingling in both hands and feet - depending on how bad the crushed nerve is being affected. I have hand tremors. I’ve lost 6lbs - I only weighed 110.
My world has shrunk to “work” and “recovering from work” - and I am barely able to work only because I have a $900 chair to sit on. By the time I drive to and from work, my hands are painful pins and needles.
I feel like I am going to have to quit my job unless something is done NOW, but all I can get out of the docs are more drugs that don’t do anything! My frustration level is through the roof.
I have asked repeatedly for Lupron and haven’t gotten a response. My next scheduled appointment isn’t for 2 weeks, and I just feel like giving up.
Sorry. I’m whining.
