Endometriosis

I have SIBO (hydrogen) and I believe my endometriosis is the root cause. It's an absolute bugger to get rid of though. I'm still struggling 3 years after testing positive.

That's bacterial overgrowth in the intestines isn't it? I don't know much about it but it sounds possible with the stomach issues you've been having. Did anything change before your symptoms started that could've possibly triggered them? Like an infection or a change in diet or anything else different?

My cousin has histamine intolerance, unfortunately doctors don't seem to be very well informed about it but it's not uncommon from what I understand. She finds a low histamine diet helpful, she also takes vitamin c supplements that she says helps. 💐

For me food wise low histamine is key and taking an antihistamine daily reduced my symptoms. That helped with bloating, and I stopped eating tomatoes as they were flaring up my bladder.

I was the 4 and not one scan showed anything, so I went straight ahead with wide excision surgery.

OP I’m not sure your symptoms sound like endometriosis but I’ll keep reading the thread and come back with help if I can.

Yes give us an update after the appointment, I'd also push to try all the medication I recommended above and also the scans (you may not be able to get the gastro and gynae referral before a few scans, ultrasounds etc and some of the stool and blood tests). If those tests, scans and procedures come back for a few different things they'll likely do it after that. Especially as one of your previous ultrasound was negative for anything. So it might be better to the tests and everything and then try the medication first.

Personally, nothing I've cut out or tried has done anything for me. But if you want to try, you can.

I do feel as though your gastro symptoms on your period are highly suggestive of endo on the bowel.

https://www.bsge.org.uk/centre/category/accredited-centres/

I have endo and ibs (lactose intolerance)

you can have both and your gastrointestinal symptoms sound pretty bad. My ibs was definitely exacerbated by hormones as it was very impacted by time of the month.

consider doing an exclusion diet and or eating low fodmap (although personally that doesn’t work for me).

colonoscopy would probably be a good idea as well.

buscopan can help with cramps, as can hot baths and hot water bottles.

I have almost identical symptoms to you (which have gone crazy since I've been in perimenopause). I've had so many gastro tests and all came back as normal which seems ridiculous seeing how rough I often feel.

Two years ago, at the age of 50 I was diagnosed with endometriosis and adenomyosis. My endo is deep and adenomyosis diffuse. I am due a hysterectomy soon for the adenomyosis and hopefully will have any endo excised at the same time.
My endo was discovered during a pelvic MRI scan at MY request. If I hadn't I would still be none the wiser.

I would definitely ask for a gynae referral but make sure it's with an endo expert. I was under a regular NHS gynae for 12 years and never once did he suggest endometriosis even though I told him my sister was diagnosed at 45. See if you have a BSGE centre near to you.

It's truly one of the most diagnosed health conditions.

It took me years to be properly diagnosed with endo. I had similar symptoms to you OP - the pain, bloating and diarrhoea. I also had pain when urinating during my period and was constantly fobbed off with the suggestion I had a UTI. I was only diagnosed via a laparoscopy and had to go private in the end. I have had 3 laparoscopies in total and a hysterectomy after having my kids and while I would hope GPs are a bit more switched on when it comes to diagnosis and treatment, I am not so sure ☹️

I take NSAIDs despite having moderate to sevre asthma. My doctors decided its a trade off and we changed/increased my asthma meds and watch it. Honestly I'm in pain and I just try to manage them both. You could perhaps just try them in the days leading up to and on your period. I have endometriosis, adenomyosis, PCOS and other bowle conditions as well as bladder conditions as well.

The mirena coil, thins the uterine lining so less bleeding and less pain because it does reduced cramps. Tranexamic acid reduces bleeding a lot, so definitely try that as soon as you can. I'd also get antispasmodic medication, antiemetics and anti-motility meds as well.

I had to request a second opinion after spending over a year being fobbed off by the same male GP. Second opinion was from a female GP who put in an urgent referral to gynecology. I hope you get sorted soon. I had surgery to have some endo tissue removed and it made a huge difference.

You should also get an anti-motility drug from your GP for the diarrhoea and also antispasmodic meds for the cramping of the bowels and pain. Those should all help along with NSAIDs, mirena/tranexamic acid and antiemetic. I'd then get the scans booked (transvaginal ultrasound, some new different bloods, stool sample when you have diarrhoea, push for a sigmoidoscopy as well)

Like I said earlier this could be endometriosis tissue on your bowels - even if it is, it's likely accompying a bowel/abdominal condition as well, as the gastro symptoms are severe and you don't want to just go down the gyne route and ignore a potential other problem that seems likely. I'd see what the transvaginal ultrasound shows first. They won't do an MRI without you trying the medications I've suggested first and seeing whether they work across 4ish weeks. They also will want something from the transvaginal ultrasound even something small but if it doesn't find anything they may still do but I'd guess only after trying those medications. The sigmoidoscopy might also find something and then an MRI will be easier to get plus any surgery if needed. As well as the stool tests and some further bloods.

On the GP I'd go to someone else at your practice - ask for someone with a special interest in women's health and/or gastrology etc. Good luck, I hope you find relief soon. I'd really push that your a nurse as sometimes that makes them take you more seriously.

Okay so first new GP - just book it with someone else. Second start tranexamic acid for the heavy bleeding (take it 3/4 days before your period starts and throughout your period). Then start on an NSAID (naproxen, mefenamic acid or another one). Again take it well. Then I'd consider getting a mirena coil as well. That's all immediate and can be done really easily. You may want to try a low-dose opiods but GP will be reluctant to prescibe obviously perhaps just for your period try Co-codamol. You should also get an antiemetic to take daily.

Then I'd get the blood in urine looked into ASAP. I'd get another ultrasound - transvaginal and see what it says. Perhaps am endoscopy or better a flexible sigmoidoscopy to look at your lower bowels. Following that referral to gastrology - even if it's endo on the bowels, it would likely be combined with another bowel condition that needs looking at. You can get a transrectal ultrasound as well from your GP.