Can bowel endo cause pain above belly button level?

[Nikkky]

My abdominal and pelvic pain is definitely getting worse since starting Hormone replacement therapy. After having endo diagnosed and treated in the past (including bowel adhesions) I think the HRT has stimulated bowel endo. I’ve recently noticed that as well as my usual pain below belly button level I’m now feeling very tender to touch above belly button level. It’s not the strong pain that as get lower down but it feels sore and tender. I’m a bit worried that this is bowel endo spreading higher up on my bowel. Does anyone else have bowel endo that causes discomfort higher in the abdomen?

[Nikkky]

Hi, thanks so much for your message. You’ve had a terrible time of it, I hope you’re feeling okay now. My pain could be caused by adhesions as I’ve had them before. It was just strange how my pain was steadily getting worse over the few years since my hysterectomy, which made me wonder if it was endo again. I still get pelvic pain too. One doctor said adhesions another said nerve pain another said bowel pain- who knows!! It’s actually not too bad at the moment and I wonder if the Utrogestan HRT is helping a bit. It’s all so complicated isn’t it. Take care.

[Nikkky]

It’s a crazy disease isn’t it. It’s so disheartening when symptoms return. I don’t think anyone quite understands how it can’t be cured and a hysterectomy certainly isn’t a definite cure. I had everything removed apart from one ovary. I had adenomyosis so that was the main reason I decided to have a hysterectomy 5 years ago. They were hoping to conserve both ovaries but one was adhered to the pelvic wall and causing a lot of pain so they removed it. I assumed as I’d had endo found previously that they’d check for it but I don’t think they did. No mention of checking in my notes. I wasn’t given any aftercare, no HRT or info on menopause. I realise now that I went into menopause within weeks of my hysterectomy. I asked for HRT 18 months ago as I had massive mood swings etc but was given oestrogen only HRT. Within 2 weeks I had a flare up of bowel endo pain and symptoms. I went back to the gynae who did my op and she wrongly took me off HRT and said I wasn’t menopausal! Shortly after that I got very ill with menopause symptoms. Anyway, after researching myself I’m now on HRT again and the Utrogestan too to keep the endo in check. I know some women are prescribed a higher dose of Utrogestan so whether that’s an option for you. It sounds like you’ve had a good consultant but we do have to find a lot out for ourselves unfortunately x

[Nikkky]

You were lucky to find that consultant, hang on to that one! It’s a shame they’re not all that knowledgeable and thorough. Awful that it affected your kidney too. I’m not under a gynae consultant anymore, I’m focusing on getting my HRT right at the moment before tackling it again. I’ll definitely make sure I see an endo specialist next time though- endo centres and teams weren’t around when I was first diagnosed about 14 years ago. The attitude was that once it was treated that was it, cured! They didn’t believe me when my pain soon returned. It’s been an ongoing battle but it is for any woman with endometriosis as you know only too well. I know what you mean about surgical menopause, it’s been horrific and I wouldn’t wish it on anyone. The mental symptoms are very scary. It’s terrible the supply issues with HRT, I hope the patches work well for you. I’ll be on it forever! Best of luck and I hope you can manage your pain x

[Faith103]

Hi 👋

Yes I get pain above my belly button. I’ve got stage 4 endometriosis on my bowel too. As well as ovaries and pelvic area.

Since having endo I’ve always had this pain above my belly button. I get it so bad sometimes where I am keeled over in pain. It tends to get worse with certain foods I eat. Spicy food seems to be the worse xxx

[Faith103]

Thanks for your reply. 😃

I do think spice makes it worse but sometimes it can be other foods. Things like broccoli and some vegs make me worse.

I do need to do a food diary.

Some months I’m okay and other months my body reacts so badly. I get such bad acid as well. 🤢 so bad sometimes I feel sick and I’m so much pain xxx

Hope you’re feeling better xxx