Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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Jessye 12/14/2013

I was just typing about this in the military post, but I think I want to ask everyone their opinion. My pain management doctor has put me on Lyrica, Celebrex and Topamax (to name a few) for my Endo pain. Has anyone else been put on this?? So far none of this shit is working. I have gone through the trial & error of nerve pain killers before with my arm a few years ago & I remember back then that none of those pills worked. I told the doc this & she still insists I do this again & explained how Endo is a nerve thing & this will work, blah blah blah. She says it is because I am not supposed to be on Percocet, but I wasn't taking it everyday & at least that worked! She won't give me an emergency stash for those bad flare-up days, something I have had since being diagnosed with Endo. Plus, I still have a painful blocked fallopian tube & no one wants to do anything about it. They just flat out don't believe my pain is as bad as it is.

Anyway, has anyone else been forced to take these pills? Right now I am up to I think 8 pills a night...I liked it better when all I took was my BC pills once a night & my Percocet when I needed it..

angeleyes1206 12/14/2013

I have taken Celebrex, my gyn made me try it as a last ditch effort before he would do surgery and it did nothing for me. I am currently on Neurontin or the generic Gabapentin which is also doing nothing for me. My surgery was in April and my new doctor and I both agree that my old one missed endo but she is not willing to do another one yet even though I would be all for it if it helped give me some pain relief.

Jessye 12/14/2013

Oh I took that Gabapentin & it made me soooooo tired! That is the problem I have with all of these pills...not only do they do nothing for the pain but they make me like a zombie in the morning to the point where I am scared to drive! Do they do that to you too? & what is up with these doctors not removing the Endo then saying no to a surgery to actually remove it? Ughh..

angeleyes1206 12/14/2013

They have me on the gabapentin 3 times a day and it doesn't make me drowsy but I think most things that should cause drowsiness just don't for me. The doctor I work for wonders how I make it through work on all these meds. I tell him honestly I can't really even sleep cause I wake up in pain. My new gyn explained how my doctor could have missed it all to me in a really good way and basically my surgeon was just not qualified to recognize all of the different appearances of endo. She said sometimes the implants are clear like glass and sometimes even look like burns. Lots of gyns cannot see these and are not trained on all of this. So since she thinks he missed it I don't see why she won't go in and take a try at it. I seriously need relief!!!!

deleted_user 12/15/2013

might try some acupuncture in addition to the other stuff. some places use acupuncture as the only anesthesia during surgery! and at one time, it helped my endo overall a great deal (that was before perimenopause and bad diet, etc, etc, got the best of me)

good luck!!!

VallyWillis27 12/15/2013

Jessye,
How long have you been on the medications for? Some meds, especially anti-depressants can take a while to start working, but of course it is very possible they just might not work for you.
I was thinking about going back on Topamax and Effexor. I took them years ago for severe migraines (which turned out to be a brain tumor, but that is another story. lol) and I was definitely in a lot less pain, but then again my head hurt so bad you could have been ripping my uterus apart and I may not have noticed.
Anyways, I wanted to go back on Topamax because it is one of the few medications that do not cause weight gain, actually is can cause weight loss. After gaining 30 pounds on the meds I am on now (and they don't even work that well) I am looking to change things up a bit.

Are you able to see a pain management specialist?

PoisonedApple 12/15/2013

No one knows what causes endometriosis pain. I've only seen a handful of articles that addressed this (I'm pretty sure one is authored by a Vicky Young). Here's a link to a discussion of her article:

http://www.insight.mrc.ac.uk/2012/11/06/somethings-got-to-give/

There's all of these studies focusing on treating the disease, but not on figuring out WHY it causes pain. If doctors could figure out exactly why it causes pain it would probably help in determining beneficial treatments.

So endometriosis might be affecting nerves. It might not be. No one knows. It's all just theories and nothing solid.

Christine1976 12/15/2013

I have fibromyalgia and have been on those meds for that....can't say they really ever helped the endo stuff! :( (didn't really help the fibro much either!)

deleted_user 01/02/2014

Hi Jessye, Im on Topamax right now- I take it instead of Gabapentin because I did not like the side effects associated with gabapentin. I take the Topamax as a medication for my migraines but started it with hopes it would also bring some relief to my chronic endo pain.....I honesltly cannot say that my Topamax has relieved my endo pain, however definitely helps with my migraines (and weight loss) Unfortunately I have only found that Vicodin and heating pads and Flexeril before bedtime are *helping manange my endo pain* and I say that lightly, I still have pain but this allows me to function.....although I hate being on so many medications at 25 yrs old!
Anyways, wishing you luck and hoping my comment helps. If you have any other questions feel free to message me! :) Happy New Year btw!!!

deleted_user 01/02/2014

I am on the gabapentin, but I am going to ask about some of the other mentioned here to see if they might work better for me. Thanks!

Christine1976 01/02/2014

I've taken cymbalta, neurotin, lyrica,Celexa.....all for fibromyalgia....none did anything for my endo pain (or the fibro for that matter!)

angeleyes1206 01/03/2014

I've noticed that the gabapentin doesn't stop my pain or make it better but I skipped it for a few days and the pain got much worse. I don't like the weight gain I am having with it, so I'm thinking about trying topamax. My urogyn's nurse practitioner had been lecturing me on getting my weight under control so I'm hoping they will be willing to let me try this.

deleted_user 01/03/2014

I agree the gabapentin does only help a little bit and when I tried to stop it the pain comes back big time. I want to ask about switching to topomax and maybe trying that flexerol someone mentioned.

Christine1976 01/03/2014

I take flexeril (muscle relaxer) for fibro...and at times I've taken it for cramps. It does help some with that but not really endo pain.

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