Surgery results

[JackieBo]

Well, after a year of multiple doctors telling me Endo was the last possible thing I could have and all my symptoms are textbook Endo..... my lap showed nothing. (Yes, I had a highly trained Endo specialist do the lap.)

So now I'm back to square one.

They told me a million women in the UK just have unexplained pelvic pain and they don't know why. They asked me to participate in a 20 week drug trial for gabapentin. If I don't want to participate in that, then they're basically sending me back to my useless GP because I no longer fit the moguls for what is useful for their research.

I've been signed off work since September and I'm practically bedridden at this point so this news is really, really distressing. I'm only 34, I'm too young to lose my quality of life like this and now they're saying they can't explain it so i'm on my own essentially.

I don't even know where to go from here. 😔

[AllWeNeedIsluv]

So sorry hun this is 💩. I wouldn't know where to go if I was you. Are you going to do that trial? My mum took that fort other reasons and it just made her laugh. Don't know if it's a side affect or she just responded odd to it but that's what happened to her.

Have you done all diet changes and things anti inflammatory foods etc 💗🤗😘

[JackieBo in reply to AllWeNeedIsluv]

I had my gall bladder out ten years ago so my diet and eating habits have been under a microscope ever since due to the issues I've had from that.

I'm just not really sure where to go from here. They told me before the surgery that 55% of these diagnostic laps come back negative - that's a lot of useless surgeries being performed for them to come back with no answers for women in pain. It just makes me feel like I'm crazy and now have no proof to support the fact that my pain is real.

[AllWeNeedIsluv in reply to JackieBo]

I know it's 💩, one thing iv learnt drs don't know everything they've still got so much to learn and udt because they can't identify a problem doesn't mean there isnt one. Pain is an indication of a problem. Have you been seen by gastro before.

Are you going to do the trial? 💗🤗😘

[JackieBo in reply to AllWeNeedIsluv]

I've seen six different gastroenterologists over the last nine years. The first five were all in America and really dismissive and decided I must have IBS without doing any tests or anything. I saw them all specifically about he issues I had after having my gall bladder removed. Apparently, I'm just one of the lucky 1% that have severe issues after having it removed and they all told me I'd just have to deal

I finally saw one here in the U.K. and he listened to me and told me specifically what part of my digestive system was causing the issue and prescribed me a bile salt binder to stop my issues, but that was really only (sorry for tmi) just constant loose stool issues, not the constant cramping around my cycle, lower back pain, severe heavy periods, constant bloating, even if I haven't eaten a thing.... I've had horrible periods since I was 11 and didn't have my gall bladder out until I was 24. It isn't IBS.

I don't know about the trial. I need to learn more about the drug.

[Fabbird in reply to JackieBo]

Hi, I’ve tried gabapentin, but under my GP rather than on the trial. When my GP suggested it I did some reading. I think it’s actually a really good trial as they are trying to find a treatment for pelvic pain. My problem was with its location so I decided to try it under my GP instead.

From what I read, gabapentin is for nerve pain, ie sharp stabbing pain, not cramps. If that’s the kind of pain you are getting it might be worth a try.

It’s a drug you have to start gradually, building up the dose over a week or two. Once you’ve reached a therapeutic dose, you keep taking it continuously. Personally I got very few side effects, just a little nausea to start with and it settled. But I wasn’t sure it was helping me so after a month or so I tailed it off again. It seems you can only find out by trying these things. If you search for old posts, you’ll find some people have found it helps.

[JackieBo in reply to Fabbird]

Thank you for sharing your experience with it. I really appreciate it!