Endometriosis in Bowel

[Endo8701]

Hi girls,

I am back, its been a while. I have since had my baby but Endo is ruining my life. The main issues for me are the pain, bowel issues and acid reflux. Looking after a baby and dealing with these symptoms is horrendous.

I have been put forward for an MRI on my bowel. I am hoping something will show up. I have Diarrhea every single day. The pain gets that intense it makes me loose. I have bled through my bowel when on my period for years now. I suffer with acid reflux and I've had all medication for it and nothing works. Even had endoscopy to check for GERD but all clear. So it must be something to do with Endo in my bowel or intestine that's causing this. I have Nausea every single day because of it.

I am at my wits end now and will be pushing for surgery to sort me out. I just know deep down something isn't right.

Does anyone else suffer with the same symptoms? Xx

[Puffling1]

Yes! I’m newly diagnosed and had no idea that so many health issues I have can be caused by endometriosis. I have bad constipation and almost no natural bowel movement so different to you in that respect but my reflux is fairly new and has deteriorated a lot even though I’ve followed the diet I was given for almost 5 months now. I’m sure it’s related to the endometriosis and bowel problems in some way. I’m sorry I don’t have anything positive to pass on to you as I know very little about endometriosis but wanted to say “I hear you and I’m so sorry it’s happening to you too.” It’s very difficult to deal with. I’m losing weight and have constant sore throat

[Endo8701 in reply to Puffling1]

Thanks for the reply hun, means alot. Just nice to talk to girls on here who are in the same boat as you. The condition can make you feel so lonely as no one really gets it? Sorry you are going through similar symptoms to me. It's sucks doesn't it, I just hope and pray one day we get a cure or some sort of medication to stop all of this. Did you recently get diagnosed via surgery?

[Puffling1 in reply to Endo8701]

No it was an MRI that showed it along with adenomyosis and tethered bowel. I had no idea that this would be the diagnosis but I’m now realising many of the health issues I’ve had over the years are possibly linked. I’m supposed to be deciding whether I want surgery or not but I don’t have any information about the operation to know whether it’s something I should do or not. It’s difficult to get my head round it after so many years of feeling disbelieved by medics. I’m not sure some will believe it even now. I’ve lost so much trust. Yes I understand you saying it makes you feel lonely and no one gets it. I feel like I’ve spent my life trying to look normal and well when in reality I’ve been struggling immensely inside but felt unable to share it. I’m glad I finally dared to post. It feels a little less lonely. I hope you find something to help

[Ldn6]

Hey, I had similar bowel problems & severe pain during my period, with constipation then the other extreme. I only had an ultrasound with an Endo specialist, which didn’t show Endo but was recommended lapro surgery based on symptoms. Had lapro 2 weeks ago which found & removed deep endo on my bowel & other areas. Massive relief to get a diagnosis, realising years of hidden problems were all linked to this!

I discovered “Nancy’s Nook Endo Education” on Facebook after my surgery, which has great info on all things Endo. Especially on making sure you have ‘excision’ surgery & getting a specialist consultant, which you need for any bowel work as it’s so complex - I was so fortunate to have fallen into a highly recommended surgeon able to do all the excisions.

Hope you get seen soon!

[Endo8701 in reply to Ldn6]

Thank you for replying. I do follow Nancy Nook on fb. The hospital I am at is listed in the BSGE endo centres in the UK. I do follow a hospital group on fb of girls who are under the centre so that helps with feedback.I just want answers and hope things improve once I have surgery. How did you feel after you had the op? Were you in alot of pain? How are you feeling today?

[Ldn6]

Sounds like you’re on the right track to getting help then. I had the surgery on 24 July, won’t lie it has been a rough recovery & was in severe pain (cocodamol helped me, but also worsened post-op constipation which ended up being more painful). Pain went down until my period started on the 2nd recovery week, which has been longer than normal. Did expect first few periods to be painful while wounds still healing, and now starting to feel normal again. Plan to return to work on Monday after 3 weeks off (surgeon had recommended 2 weeks before the op).

Been a huge relief, but exhausting - seems like realistically it takes a few months to fully heal internally & feel the benefits. I also had the mirena coil fitted & warned to try 8 weeks for that to settle… Recovery seems to vary so massively on these forums, so hard to gauge what’s standard/normal!