Adenomyosis and retroverted uterus, could this be causing my bowel issues?

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I’ve had so many issues over the years with digestive and gynae issues, they have completely shaped my life and for the worst if I’m honest.

Over the last five years I’ve had 2 colonoscopies, 3 gastroscopes and a pill camera endoscopy along with several us scans. My gastroenterologist has now discharged me with the same diagnosis I’ve had for the last 30 years - IBS and functional dyspepsia.

Following on from decades of heavy periods I opted for a uterine ablation in 2022, this sadly failed causing pain. In 2023 asked for a mri which picked up endometriosis and adenomyosis (total shock as I had been a patient of the same gynaecologist for 11 years). I was referred over to the endo team (our hospital is BSGE centre) and now have an endo gynae. It’s all been a long wait and a lot of faffing about but I’m due a hysterectomy in October (I am terrified to have this op due to the disastrous ablation but that’s a whole other thread).

My endo gynae won’t even discuss my digestive issues stating they are nothing to do with my gynae ones, I don’t particularly like this guy he has a reputation for having zero bedside manner but is supposed to be a good surgeon so I hold on to that as a positive because tbh, he upsets me every time I consult with him (talks over me and barely listens to my fears etc).

Because the wait has been so long and because my gut issues are getting worse I recently paid to have a private mri scan. This scan was at the same local NHS hospital that I always attend and with the exact same radiologists, it’s just that they offer private scans too so I didn’t have to have a referral from the gynae.

Looking at it I’m now convinced that my large retroverted uterus sits on my lower bowel/rectal area and I’m now wondering if this is contributing to my bowel problems? I requested an appointment with the gynae which was a telephone call last week, I sent the image over to him but in true form he was off-hand and wouldn’t discuss it as it was not a nhs scan even though done at the same hospital with the same staff! He just dismissed me, as usual.

I know none of us are gynae or bowel experts but if I upload the image can I ask what others think, does it look to you as though my uterus sits on my bowel area? Sorry in advance that it’s not the clearest of images but I didn’t have the contrast dye.

I feel that I have spend decades going round in circles and I’m losing my mind from the stress of it all.

Oh, what a numpty. Adding the image would have been helpful!

I'm not really able to "read" your scan, but from your description, I'm unclear what you wanted your gynecologist surgeon to say. I may be completely misunderstanding your situation, but if your uterus is indeed pressing on your abdomen and you're scheduled to have it removed, then won't that sort out your gastric problems as well as your gyno ones?

You can’t interpret an mri from a single image - it needs to be looked at as a whole and reported in the context of previous imaging/symptoms. The report would say if they thought there was an obvious anatomical cause of symptoms but if you’ve had normal GI investigations in the past this probably wasn’t going to add much. You’re having your uterus out anyway so if the GI symptoms improve then you’ll know that it was contributing but if the symptoms are mainly dyspeptic then it may not make much difference at all.

I can’t tell anything from your scan. But endometriosis adhesions can stick to the bowel and pouch of douglas and this very much can cause adverse bowel symptoms. Are you in the UK? Maybe you can contact PALs and ask that your records are viewed by a multi disciplinary team that has both specialisms. It maybe that they decide a colorectal surgeon needs to be present at your surgery.

Thanks everyone, I did think the image probably wouldn't give too much to go by.

I've struggled with the gut issues for so long and I just hoped my gynae could have given me some indication whether or not he thought it could be connected to my gynae problems, I see many women on support groups saying they have so many gut issues alongside their endometriosis/adenomyosis but he refuses to discuss it with me.

I suppose I won't know the outcome until I've had the surgery, I'm just very apprehensive and concerned it may exacerbate my bowel problems and create further issues.

Thank you.

My gynae says he will perform the hysterectomy and excision surgery without a colorectal surgeon but if he finds there is bowel involvement i will need further surgery with the colorectal specialist which is disappointing as I'd like the surgery all in one lot as I'm terrified as it is.

I will ask PALS for their advice.

Yes of course you would, it’s a lot to prepare for and recover from. I would defo contact PALs. If the Gynea can’t give a reason for not involving colorectal at this stage, that stands up, they might back down. Good luck with it all. I hope you get relief from your symptoms after your surgery.

My adenomyosis and endometriosis was diagnosed due to bowel issues.

I've always had horrific periods but was brushed off for years. It wasn't until I was suffering with severely painful bowel movements every month when my period was due that my GP suggested testing for endometriosis.

After a gynae referral and testing, they found my endometriosis and adenomyosis.

I find that If i ensure my bowels are "empty" before my period comes and before ovulation, the pain is much less severe.

If I don't empty my bowels before my cervix moves into position for my period/ovulation then I end up with a severe blockage due to my womb pressing on my bowels and stopping it all coming out.

It's not easy but a diet high in fibre and some gentle laxatives helps me manage it.

I think it is imperative that the surgeon and you can actually work as a team. I would be extremely wary about having this particular surgeon who has no bedside manner of any sort operate on me. I would certainly want to have further discussions with the gynae who will perform the hysterectomy beforehand and would also want a discussion with him a week or two post op to discuss the findings (so not in the recovery room!. That is bad practice on the part of the hospital).

Endometriosis can get onto the bowels, it can go anywhere within the body really so your bowel/stomach issues could be due to this. I am convinced that many women who get diagnosed with IBS actually have endometriosis instead.

Having a retroverted uterus is normal but if its being pulled about due to endo then that can cause pain.

I would also suggest you have no more surgery than is absolutely necessary.

This is my concern, how can I have faith in a consultant who appears to have little time for their patient? My last face to face appointment with him was May last year and I have been on the waiting list since then. I was the one who requested the telephone call last week as I have so many questions (sent him 10 questions by email but he didn’t answer any of them), if I hadn’t requested this appointment then the next time I’d have spoken with him would be in October for my surgery.

How is it acceptable to go almost 18 months without some kind of ‘catch-up’ appointment or at least a scan for them to go over, anything could have change or developed in that time especially at my age (53). The lack of support and information really worries me.