Endo and/or adhesions.....what were your symptoms?

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Particularly adhesions. Background is I've had abdo pain for more than a year, it's more upper right side and initially thought to be gallbladder, then IBS, then dyspepsia. Gastro had ordered MRI abdo ??adhesions. Pain has been so severe I've been admitted a few times and needed morphine, is worse with eating/eating certain things but gastro consultant feels all fits with adhesions the most. Had ultrasound, CT, loads of bloods and all normal (other than low iron which is a chronic on and off thing, heavy periods and cysts on right ovary already known).

What were your symptoms? Where did you feel your pain? I have right ovary pain cyclically and have known cysts on my right ovary.

It fits so well with gallbladder issues also but nothing at all shows with this!

Should say I'm waiting for an abdo mri

For me it was decades of gut issues (IBS and dyspepsia), very very heavy periods to the point that I became really iron deficient. Weirdly no real period pain but ovulation pain very uncomfortable and would last a week and so painful it would hurt to sit down.

I had been under the same gynae department since 2011. Had endless us scans and only a thickened uterine lining and recurring polyps were ever found. Ended up having 6 different hysteroscopies over 5 years to remove the polyps which kept growing back.

Eventually I opted for a uterine ablation in 2022. That failed causing me awful pain so I demanded a MRI as I was certain something was not right. Turned out I have deep endometriosis and diffuse adenomyosis. I was 50 when I discovered this and now on a waiting list for a hysterectomy and excision at the same time.

It seems to take an age to get an endo diagnosis despite something like 1 in 10 women suffering with it. I couldn't believe it took most of my adult life to get a diagnosis despite period issues from teen years and me telling my gynae my sister had been diagnosed in her 40's (it can run in families).

Good luck op, keep pushing for answers, I don't let them fob you off.

@PlatinumEdition that's so helpful thank you, I mean, this is literally me, I've been on omeprazole for 20 years, (I'm 42 now) have ovulation pain for 10+ years that esp where cysts are can be really hard to distract from and YES lasting a week! I thought it couldn't be just ovulation pain lasting a full week!!

Thanks again for sharing your experience.

Are you under a gynaecologist? I had a pelvic MRI with contrast ordered via my gyane. I am under a gastro too and have had lots of tests but never an abdominal MRI, does that cover the pelvic area also? My radiographer was an endo specialist and knew what he was looking for, endo can easily get missed via MRI. Sadly, I had to push and push for them to take me seriously enough to agree to the MRI.

It's awful that we have to suffer for so long. If you haven't already and you are on Facebook I would recommend all the endo support groups, they are all so helpful.

Good luck with it.

I had severe pain for years and couldn’t get pregnant or hang on to the rare pregnancies I had.

Multiple surgeries later and my entire pelvic wall was resectioned. Ovary was glued to it. Still in massive pain. Never gave birth.

@PlatinumEdition sorry yeah abdo pelvis MRI, gastro still wants to check nothing upper abdomen going on so just doing the lot. I owing my luck it won't show anything!! Not under gynea ATM, I was some time ago and she said she suspected it (symptoms nowhere near what they are now) but gave me the pill and said treatment wouldn't be any different if confirmed a that point so no point doing lap etc.

@Princessconsuelabananahammock9 I'm so sorry you've had such a terrible experience 😔

Bump, anyone else?!

My DD had pain for years that got worse and worse, agonising pain around or just after ovulation & IBS. NHS were useless and she was classed under unexplained infertility. She had an MRI, scans and and hycosy. Nothing found bar an ovarian cyst. We paid privately for a top consultant who did a laparoscopy and found stage one endometriosis and bowel adhesions that he removed. Some of the endo had self healed. She fell pregnant pretty damn soon after the procedure and the consultant was so happy for her but remarked the speed.of conception was a rare thing.

Mine was heavy periods for years, IBS symptoms and then last two years constant lower abdominal pain. Not unbearable pain more a constant nagging pain/slightly crampy. Occasional stabbing pain on the right side.

Just had laparoscopy and an ablation. consultant said endo was extensive with adhesions on the bowel. Bowel is adhering to pelvix organs. need a second op to deal with that. Will push for a hysterectomy.

I was surprised it was as bad as it was considering what pain a lot of women suffer but consultant said symptoms don't always correlate with severity.

@CherryRipe1 did your daughter's pain/IBS type symptoms get better after surgery?

Yes @Onemorestepalongtheroad I've heard that about severity and symptoms, it's such a bloody head F!!! Did the surgery for adhesions help at all?

I do think I have it, have all the symptoms, it's just whether MRI shows anything and if not if they feel lap neccesary

She fell pregnant pretty soon after the operation and pregnancy is meant to alleviate endometriosis pain so that's been pretty ok, the usual pregnancy niggles, nausea and reflux, but we shall see after baby is born next year re pain and cramps when her periods return.

@CherryRipe1 ah sorry assumed the baby had arrived! I felt the best I'd ever felt when I was pregnant! And it did ease things for a couple of years then slowly went back to prepregnancy x

He couldn’t do the surgery for the adhesions on the day. As the bowel is now adhered to the pelvic organs it will need a multidisciplinary surgical team apparently. So I could be waiting at least another year if not longer for that.

It’s a couple of months since my ablation. So far no bleeding at all but in terms of previous pain it’s still similar but maybe more good days now. So I’m guessing it’s the bowel adhesions that have been causing most of my discomfort. Although I don’t need to pee as frequently as I used now!

I’m pretty frustrated about the second op and fee that it may not have got so bad if I hadn’t been fobbed off by the GP for so many years. I also suspect going on HRT a couple of years ago has impacted the situation.

I didn’t have an MRI only an ultrasound and nothing bar a couple of polyps showed up on that. I think I was lucky to be referred to a great consultant (eventually!) who thought it was likely Endo. If nothing shows on your MRI push for the laparoscopy as it’s the only definitive way to diagnose.

Baby is due around February time, we feel, & the consultant agrees that the inflammation from the endo was preventing conception. This is the worry, that it's going to return & I'm sorry that you are suffering. I don't think enough research is being conducted into this fairly common debilitating condition. My neighbour had a hysterectomy at 44 due to the impact it was having on her health.