Symptoms for endo on bowels?

[Emma5397]

I got diagnosed with endo in December, I had two patches on the right ovian fossa and one patch on the left pelvic side wall... Iv been in agony again since February and only just been referred back to the gynaecologist, I'm seeing them next month ... I have IBS (apparently) and I have when opening Bowels (when it actually happens, I can go days without doing so) I sometimes have shorting pains going up my rectum ... Iv recent read that IBS can be mistaken for endo...just wondered what the symptoms are for endo being on the bowels

Thanks Emma xox

[Starry]

There is a difference between on and in the bowel. I had a 3.2 cm endo nodule on my bowel that distorted the bowel into a u bend with adhesions and attached it to the vagina. Bizarrely mostly my symptoms were back ache, bladder issues, extreme fatigue and occasionally fainting in pain during a bowel movement particularly after large or stodgy meals I had a near vegan diet which had lots of fibre and wondered if that staved symptoms off a bit. These may be interesting articles

centerforendo.com/endometri...

endometriosis.org/resources...

endometriosis-uk.org/endome...

endopaedia.info/subtype14.html

[Emma5397 in reply to Starry]

Thank you! I'll have a read xx

[Starry in reply to Emma5397]

Did you have a MRI scan or Sigmoidoscopy? If you had a general gynae diagnostic then try to get the op notes or ask if the pouch of Douglas was obscured or had adhesions. Sometimes endo can be hidden beneath or inside the adhesions and not get identified.

Also it might help to keep a detailed food and symptoms diary for a couple of months to get evidence and see if your rectal pain is cyclical, or conversely there are any food patterns ( eg FODMAPs) to steer you one way or the other.

Mine was largely cyclical, I just never put 2 and 2 together. It's definitely worth raising. The last article mentions that it can occur with ovarian endo. I had a small cyst and 2 endo plaques 1 under each ovary. My nodule was unmistakable and found as a lump by a GP ( very scarey for a time) but better to diagnose and treat it earlier if possible I only narrowly escaped a bowel resection.

Ultimately if you're unhappy with the answers you could seek a second opinion by a specialist BSGE Endo centre expert either by GP re referral if they are willing or paying for the initial consultation only with a view to being accepted into their nhs list if they felt your case warranted it.

[Caranne in reply to Starry]

Hi Starry

This sounds like me and the symptoms Ive been getting.Did you have surgery on your bowel? I'm having surgery and he's said he will treat things conservatively so hoping he will be able to just shave endo off the bowel x

[Starry in reply to Caranne]

Yes I was reluctantly persuaded into surgery due to the risk of it penetrating through the bowel wall. I was warned of the risk of resection or stoma. Luckily I got away with a very deep bowel shave but needed extensive vaginal repair. I was told afterwards that he got it all. It's been a difficult recovery for me due to some unlucky complications but 8t was necessary I think as it would have been worse if I'd left it.

[Caranne in reply to Starry]

Oh I'm sorry to hear that, hope you're feeling better now.He hasn't mentioned anything about vaginal repair being necessary but I'm going to ask him some further questions I think as not sure what to expect.

[Starry in reply to Caranne]

It wasn't mentioned to me preoperatively, all the conversations were about risk to the bowel quite naturally. It just happened that the other end of the nodule had done a lot of damage and in surgery was much bigger than the MRI had indicated. I lost about 4cm2 of my vagina apparently and the op took twice as long as expected.

I'm over the actual surgery now at 3 months but have been ill with viral meningitis, nerve pain and most recently GERD so am not really back to normal yet. I start a phased return in a fortnight. I hear it takes 6 months to know where you are with everything.

[Katzak]

I had a mass in my bowel, main symptom was excruciating pain going on my period as bowel was hooked to uterus. Over the years developed bowel urgency, colon spasms and cramps then finally constipation due to partial blockage due to the mass. Never had one exploratory but would be asking for one if I could go back a year and a half to when I was first referred!