Newly diagnosed and would really appreciate some advice/shared experiences...

[Snowsong]

Hi, I've just turned 28 and was diagnosed with mild - moderate endometriosis exactly a year ago, by accident (as I'm sure a lot of cases are diagnosed) when they were removing an ovarian cyst. I wasn't getting particularly painful periods but I had horrendous bowel issues which flared up around the time of my period so was investigated for that.

Anyway, what I really wanted to know is if endometriosis presents as bad IBS or if that is a separate issue. I've had extensive gastro investigations which were non conclusive but I have extremely distressing symptoms daily now all through the month - loud, embarrassing flatulence, diarrhoea practically every morning, cramping, bloating and haven't had a 'normal' BM in what feels like years. Could this be connected to this endo? As far as that's concerned I've been offered to have surgery next year to remove the lesions but I've heard mixed opinions about that too, I wonder if anyone on this forum has had the surgery and can advise whether I should have it or not and if it may alleviate this symptoms...

Sorry for the long winded post. It's been a really bad year for me and my boyfriend actually left me a few months ago because I was so unwell with it and he didn't want to know about the endo, he told me I had made it all up in my head. I feel seriously depressed, in pain and don't even know if I can have children. Nothing much has been explained to me, just a slip of paper with my diagnosis on it.

Thank you in advance for your time...

K x

[Stellauk]

Hi

I had some bowel issues with my endometriosis too. It is important that you are treated at a BSGE centre. So that there is specialist bowel surgeon working with the gynaecologist.

My bowel issues are not as bad as yours. But it is still very painful and socially awkward. At my consultation with the bowel surgeon, he said the operation will help the pain greatly however, bowel habit can be difficult to treat. After my surgery for total excision of endometriosis lesions, I found my bowel symptoms significantly improved.

So the key is to see the right surgeon at the right centre. Check out lindle posts here for referral pathways.

Best of luck and keep us updated.

[Hidden]

I have confirmed bowel endo (rectovaginal/rectosigmoid endo) which has pulled my bowel out of position and currently causes me a whole plethora of bowel symptoms. In my 20's before I was diagnosed I had endless bouts of unexplained diarrhoea that would start randomly when no-one else was ill, and constant indigestion. I'd always had what I thought was just a dodgy digestive system. My disease is more advanced now and I have chronic constipation and have to use laxatives on a daily basis. I have spells of passing mucus and sometimes bleeding from my back passage. During my periods, I have dreadful bowel pain, like the worst stomach flu you can imagine, and the rest of the time I have bowel spasms and pain on a random but pretty much daily basis.

I was tested for all sorts of bowel related issues, had a sigmoidoscopy which was clear, and was told I had IBS before finally being diagnosed with endo earlier this year. We're all too often fobbed off with a diagnosis of IBS but this is NOT IBS, it's bowel endo. It has a clear cause, which IBS does not.

As has been said, if there is any possibility that you have bowel endo then you need to be seen at a bsge endometriosis centre and not by general gynae. I am currently in the process of being treated (had surgery a month ago and am now waiting for more). In the meantime, there are various hormone treatments which you should be offered to try and control your pain as well as all sorts of different pain meds we can use so if you aren't getting decent pain relief with what you have, please go back to your GP and push for an alternative.

[GrittyReads]

Are you in the UK? If so, check out tillytrotter's post today about BSGE Centres - and spread the word.

Take care xx

[andrea_27]

Endometriosis can definitely affect the bowel. I had just about every treatment out there for mine, plus lots of alternative remedies. The only thing that worked was excision surgery which I had done in the U.K. I had a brilliant surgeon and it took quite a few hours (mine was stage 4 endo) to get all of it off, but the relief I had was amazing. No other surgery to remove it was effective. Good luck!

[Lou7707]

Dear Snowsong

Our website has some useful information about endo and the bowel. Hopefully the link below answers some of your questions.

endometriosis-uk.org/endome...

If you have any further questions, we offer a range of support from online support groups to our helpline. We will do our best to answer your queries.

endometriosis-uk.org/helpline

endometriosis-uk.org/suppor...

endometriosis-uk.org/online...

Endometriosis UK