Endo, interstitial cystitis and IBS - any... - Endometriosis UK

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Endo, interstitial cystitis and IBS - anyone else?

siobhan19 profile image
5 Replies

Hello!

I was finally diagnosed with endometriosis back in 2017 after a laparoscopy and in October I was diagnosed with interstitial cystitis after another operation. I also have suspected PCOS (polycystic ovary syndrome). Yesterday, after years of symptoms and a few weeks of tests, I have been diagnosed with IBS (irritable bowel syndrome).

Despite searching all over the internet for anyone else with all 3, or any articles discussing the overlap, I can't find anything. It seems to be common to have endo and ibs, or endo and interstitial cystitis, but not all 3. I'm just feeling a little bit overwhelmed at the moment and as I'm only 22, the thought of constantly coping with the abdominal pain from all 3 is quite stressful.

I'd be so grateful to hear from anyone else who has the same or a similar diagnosis.

Thank you x

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siobhan19
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Moon_maiden profile image
Moon_maiden

Hi

I had/have endo, no idea at this point after hysterectomy.

My main symptoms didn’t go which were digestive problems and ones that I complained about most. Gastro just said it was gynae.

Have a look into SIBO. Going by anecdotes it’s quite common to link the two. My investigation and treatment aims are currently based on this.

Wilder_ness profile image
Wilder_ness

Yes - I have all 3. Gosh only 22, that’s a lot to cope with at so young an age. But on the positive you have a diagnosis.

I was fobbed off with the IBS as well but have you had an MRI and/ or surgery yet? Have you had a consultation with a colo-rectal surgeon as well as gynae?

This is not meant to worry you but my endo had grown through the bowel. My symptoms were either: I was totally constipated or I couldn’t even have a sip of water without severe diarrhea.

But the main one was I would have an intense and excruiating pain in my rectum when I bled. Like a cattle prod - enough for me to nearly be sick or pass out. If you have these symptoms please tell your Dr/ consultant.

abbs1 profile image
abbs1

Hi! I have diagnosed IC, IBS and suspected Endo - just waiting for the official diagnosis. I’m only 17 unfortunately but thankful i’m on my way to a diagnosis so early. My mother suffers with IBS and Endo so I have a support system there but it’s quite hard regardless!!

Dogmad6 profile image
Dogmad6

I wouldn't be remotely surprised if you had endometriosis affecting your bladder and bowel. These problems are so common with endometriosis. I got fobbed off with the IBS diagnosis for at least 20 years. I also had endometriosis on my bladder which recurred after excision surgery. If I were you, I'd be strongly tempted to ask a lot of questions of a specialist in Endometriosis rather than just a gynae. Half the time they just fob you off with the IC and IBS diagnosis. Parts of the body don't act in isolation. My specialist told me the first time I saw him that it is a whole body disease.

Good luck because the symptoms of all you've got are horrible and I personally think you've been fobbed off. Obviously this is only my opinion based on my own horrible experiences. xx

csytasista profile image
csytasista

Recommend this podcast which talks about endo, IC and SIBO being a trio. thisendolife.com/this-endol...

Where I tested for SIBO: smartsibotest.com/

I have been diagnosed with IBS for 20 years, but I very recently got a SIBO diagnosis and things are making a lot more sense to me now!

Hope that helps x

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