?Bowel Endometriosis

[Dizzy_]

Hi, first time posting.

I am mid 20s and I had an internal ultrasound over a year ago due to having an off off episode of bleeding after sex. During this time I also had been having GP appointments for bowel issues like intense urgency, loose stools and abdo pain. I have been on the combined pill since I was 13/14ish for heavy periods (never suffered with cramps) but changed to progesterone only about 2022- so no longer break for a period.

The day of having my ultra sound my GP rang me to discuss stool sample results- which were fine, nothing found. But she said that my scan reported that one of my ovaries was attached to my uterus and possible endometriosis. She asked me usual questions about any painful cramps etc and I said that I hadn’t had a period for years due to being on the pill for so long. She referred me to the gynae department at my hospital, I’m still waiting for my appointment a year later!

However since that, I had numerous other stool tests, bloods, taken sachets to help with movements and even a colonoscopy because one of the samples came back with possibility of colon cancer- luckily colonoscopy all fine.

This whole time I had endometriosis in the back of my mind and have researched a bit of the effects of it on the bowel- I feel I have a lot of these symptoms. I spoke to my GP and she agreed there could be a good possibility of it.

What I would like to know is if anyone has been in a similar situation as me? Not had issues with periods (as far as you were aware) but bowel symptoms? All I see online is about discussing with your doctors your pain and period symptoms.

If so how long did it take for diagnosis/treatment?

Thank you x

[Vet_nurse26]

hey Dizzy,

First of all, can completely relate on the diagnosis saga, sometimes feels like they overlook endo entirely or don’t know enough about it to realise all the symptoms fit exactly. I suffered with sever pain during sex and crippling period pain (which I always thought was normal) in my early 20s and was told to get multiple sti checks despite knowing that wasn’t the cause - I was put on the pill and i gave up fighting for a diagnosis.

Long story short, later in my 20s I went to the doctors for what I thought was consistent painful bowel movements and often involved a lot of bleeding.

It wasn’t until a job I had with private medical insurance I decided to try and pursue a diagnosis again, so for me it took 8yrs overall to be officially diagnosed. I have endo that is at the back of my uterus and attached to my bowel and the surgeon advised he wouldn’t do surgery unless it was a last resort due to the risk of ending up with a stoma bag.

My symptoms now are still ibs-like and the usual random shooting pain / cramps, chronic fatigue etc but once you learn more about your own endo I find you often end up having to explain to the doctors that this is what we need to be pursuing in terms of a diagnosis etc.

However, management / treatment is still quite limited (esp as surgery is less of an option for me) so I am just on the progesterone pill like you and avoid having periods that create more scar tissue. I might try dinogest at some point but I think it’s similar to the pill in how it manages the symptoms it’s just whichever one gives you the least side effects 🤞 I hope this helps.

[Vet_nurse26 in reply to Vet_nurse26]

Also - just to add, I also have a lot of painful gas / abdo pain and buscopan is your friend, highly recommend! 😅

[EndoCoeliac_Woman]

Hi!Yes. Definitely. My periods are not that bad. But I have stabbing pain before going to toilet and random bloating on some days (probably ovulation but I'm not sure, as I don't have my period as well). I believe that if you have endo on your bowel you can have pain independently from your period, because of the scar tissue. You should have a proper MRI but I believe you should consider a laparoscopy to remove that tissue. I felt much better after, even though I still have some pain sometimes.