Endo returning - but feel at a loss.

[MarchwoodMR]

Hi.

I have experienced endo-like symptoms since I was around 12-14 (ten years ago) but over the course of the last few years it has gotten progressively worse. I spent most of last year trying to get taken seriously by doctors who had dismissed my problems as simply "bad periods". However, my pain, bleeding, and irregular bowel symptoms had begun to prevent me from living a normal life (unable to attend university, work etc) and I couldn't continue without something changing.

Ultimately, after much pushing my doctors, and several months spent on IBS medication that did absolutely nothing to help my problems, last Christmas (2014) I had an investigative laproscopy, and stage 1 endometriosis was found and removed. After the surgery, while I was coming round, I was told that it is likely the endometriosis found couldn't have been causing the (extreme, and at times debilitating) pain that I had been experiencing, and I probably have IBS. Despite this suggestion, IBS medication continues to prove useless.

After about six months post-surgery, a degree of pain has returned, and my periods are as heavy, long-lasting, and painful as ever. I have been told to resume hormonal contraception (just using condoms atm), but in the past the Implanon implant gave me almost constant periods, to the point that I became anemic, and I had to have it removed early, and the microgynon pill gave me severe depression (something I also faced with Implanon). Because of this, I am wary of hormonal contraception, but understand it could help - I am just weighing up the pros and cons.

After my surgery, I was discharged, and have not been back to the doctors since, despite almost all of my symptoms returning. Because the surgeon told me that the endometriosis found was not, in her opinion, severe enough to cause my pain, I feel like I won't be taken seriously at the doctors. I'm not sure exactly what I am looking to achieve by going to the doctors, but currently feel very alone with this problem, and unable to seek help because I feel as though I've been pushed aside now.

Does anybody have any recommendations for me on the best course of action?

Sorry for the long post! I have read this forum for a while but never posted before.

[Brownlow]

This blog is by a PhD student who is pretty expert in endo. Please see myth 3 of his post The Top Ten Bullshit Myths about Endometriosis i.e. "3) If you have minimal disease you’ll only have minimal symptoms" and follow the links for more information. endo-update.blogspot.co.uk/... Print out anything from the links and show to your GP if necessary.

It sounds to me as though you have deep infiltrating endo and you need referral to an accredited endo specialist. Your current surgeon hasn't a clue and is probably just a general gynae wanting to pass the buck for her lack of knowledge onto your bowels. Your bowel issues are caused by your endometriosis.

Find an endo specialist here and force your GP to refer you bsge.org.uk/ec-BSGE-accredi... Also see Lindle's post on how to find an endo specialist healthunlocked.com/endometr......?

Also see her post on rectovaginal endo and see if your symptoms match healthunlocked.com/endometr...?

[MarchwoodMR in reply to Brownlow]

Thank you so much for such a helpful response, I will read those links.

[Brownlow in reply to MarchwoodMR]

You're welcome. Do reply if you have more questions. there are plenty of misunderstandings out there about endo but the lack of awareness among GPs and particularly gynaecologists is shocking.