Endo, interstitial cystitis and IBS - anyone else?

[siobhan19]

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

[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]

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]

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]

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]

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