Has anyone suffered from ibs before being told you could have endometriosis

[Michayla]

Or been misdiagnosed

[vizzle_01]

Been told I could have IBS. Kept a food diary and made many changes to my diet and taken things to help like charcoal, peppermint oil and probiotics but it still flares up massively around the time of the month no matter what. Had a blood test and stool both came back normal.

[TennisAM]

If I had a pound for all the times I was told I had IBS instead of bowel endo I could probably retire (I'm only 35 😉). Sorry feeling a little sarcastic today. I have 11mm of bowel endo so unlikely my issues are IBS related.

Can I ask why you're asking? What symptoms are you experiencing?

[Dolphindreamer in reply to TennisAM]

Hi! I’ve stumbled across this post so sorry for joining in but am also currently of confusion about IBS/Endo. I’ve had chronic bloating issues as long as I can remember which get worse via sugar/gluten and before/on period. I get really painful stool movements on my period with sharp pains and have always had heavy periods, although occasionally am lucky and have one that doesn’t completely wipe me out day 1-2. Unsure if to check about endo as I’ve never got anywhere with IBS , as in nothing really works.

[TennisAM in reply to Dolphindreamer]

Hi , no worries at all! it's worth looking into endo. In my case I have bowel endometriosis currently and a history of bowel endo too that was treated. My symptoms are bloating, sometimes diarrhea/constipation, severe pain before and when passing stools. Sometimes the pain continues afterwards. It's particularly awful before and during my periods but I have had some times when it's a daily problem. Also used to get rectal bleeding during my periods as the endo had gone all the way through to the inside wall of the bowel.

I'm not surprised sugar makes it worse as its an inflammatory so will increase pain. Wheat is known to combine with eastrogen and increase pain in women with endo. Also wheat can be immunogenic so that can also cause issues.

None of the IBS solutions/medication work for me either.

Have you spoken with your GP about this? Did they give you Tranexamic Acid for the heavy bleeding? It's the most effective medicine for heavy bleeding.

They should send you for an ultrasound to rule out other things like fibroids if they haven't already.

Be warned most GPs barely understand endo so you might have to fight especially as a lot of your symptoms are bowel related. Either way I'd push for a referral to a bsge centre near you (if you have one: bsge.org.uk/centre/page/4/)

If there is one nearby then I'd check the reviews of the consultants on the following sites:

Doctify

Iwantgreatcare.org

Gooddoctor.com

Topdoctors.co.uk

Even if they're at a specialist centre some still are a bit below par! Once you decide who you want to be referred to ask your GP to name them on the referral form.

Under NICE endometriosis guidelines you should be referred to a BSGE centre if you either have scans showing deep endo (MRI) or your symptoms suggest you have severe endometriosis.

Have you tried probiotics?

I have found quite a few natural things that work. Happy to share my research if you send me a private message.

[Dolphindreamer in reply to TennisAM]

Hi! I cannot thank you enough for this message. I’ve been to the doctors and had tests about IBS and was sent to have a pelvic ultrasound although never actually knew what they were looking for, but all came back ok. The symptoms you have are exactly like mine; I get rectal bleeding after passing stools quite regularly particularly near my period. I think it would be interesting to find out if it could be endo in the bowels, so I really do thank you for the advice you’ve given. I’ll definitely look into the specialists and speak with my GP 🙂

[TennisAM in reply to Dolphindreamer]

Hey, you're welcome. If it was pelvic ultrasound, and they didn't want to do a transvaginal ultrasound, it's unlikely it was looking for gynae issues. Either way only obvious endometriosis shows up on an ultrasound - for example endometriosis cysts (endometriomas).

Has your GP requested a stool sample test for calprotectin levels? Although it's possible the rectal bleeding when passing stools is due to endometriosis, it could also be something else. High calprotectin levels would require an investigation for Inflammatory Bowel Disease.

Can I please ask what tests they did for IBS? Thanks

[stephersb]

Yes. Diagnosed with IBS in January 2020 then Endometriosis in December 2020 and miraculously my IBS symptons changed since my laparoscopy.

[TennisAM in reply to stephersb]

What a miracle 🤣 or a coincidence, as the medics that diagnosed you with IBS, would say. 😉

[stephersb in reply to TennisAM]

The gyne said to me that endometriosis can cause gastrointestinal issues as your bowel and womb are on top if each other.

[Melon365]

Hi Michayla

I had a gyne appointment earlier this month and he wants me to see a bowel specialist even after I have been told I have endometriosis. It's like yes I have bowel problems but they are because if the endometriosis!

If you think they are wrong, try and get a second opinion or tell the doctors you disagree, its difficult but sometimes its the only way that works.

Xx

[Wilder_ness]

Yes. So much so, I had 8” of bowel removed - after being misdiagnosed for 15yrs 🤷🏼‍♀️