potential endo diagnosis

[Dirty_dancing26]

Hi all, I just wondered if anyone could shed any light on my current situation or offer any advice on how best to go forward.

in September I suddenly started getting pain in my lower abdomen (specifically my left ovary area) and began feeling constantly sick and had diahorrea. My dr was concerned about appendix, ectopic pregnancy, cysts or potential bowel issues as Crohn’s disease is in my family. The pain continued and worsened, lasting over a month and went from diahorrea to constipation. All bowel issues have been ruled out(despite still becoming constipated each time my pain flares up), as has my appendix and any potential pregnancy. My CT scan was also clear but the pain and some irregular bleeding is still ongoing. I’ve been placed on a contraceptive my dr says is used to treat people with endometriosis and has slightly eased flare ups but hasn’t stopped the daily pain and occassional bleeding. I also get swelling in my stomach but unlike others I have seen with endo it’s my upper abdomen that swells above my belly button if that happens to anyone else? I also get pain in my lower back. Previous to this I had an internal scan as I was experiencing pain and bleeding during sex which is still the case despite the internal not showing any issues. I’ve also had numerous blood tests to look for anaemia amongst other things due to being so tired and bruising easily. I never thought to connect these issues or the fact that I’ve always had heavy and then horrendously painful periods as I just assumed a bowel issue was more likely. I’m waiting on hearing from the gyne department which was an urgent referral but has since been marked as routine on their end and I’m struggling with going about normal life. Does it sound like endometriosis could be a potential? Any advice is appreciated!

[Tiredgal72]

Hello, sorry to hear you are going through all of this.

My experience sounds similar to yours, I suffer with bowel issues (switching between diarrhoea and constipation) and I also suffer from pain and bloating higher up in my stomach, above my belly button. In fact that's where my worst bloating often is. I was diagnosed with deep infiltrating endo last year (including on my bowel) so from what you are saying your symptoms seem like it could be a possibility. Pain in your lower back/hips is also quite a common symptom and obviously painful/heavy periods too.

Ultrasound scans won't show much unless you have an endometrioma (cyst), your best bet is to push for an MRI as this can show more (but still not always reliable). I was diagnosed through MRI.

My advice would be keeping pushing for answers as your symptoms do sound consistent with endo and at the end of the day, you know when there is something wrong in your body better than anyone else! And if it is diagnosed, get yourself referred to an endometriosis specialist centre to ensure you receive the correct treatment going forward.

If you want to ask any specific questions, feel free to reach out, having gone through what your are last year, I know how scary and isolating it can be! Best of luck xx

[Dirty_dancing26 in reply to Tiredgal72]

Thank you so much for sharing this it’s so nice to hear someone else gets the bloating above the belly button as I haven’t heard of anyone! (Well it’s not nice or good news but nice to not feel alone) I’ll definitely be asking for an MRI in the hope it could shed some light on the situation! Especially with the gynecology department taking so long to get to me, it could speed things up! I may take you up on direct messaging thank you so much! I hope you’re keeping well at the minute xxx

[Tiredgal72 in reply to Dirty_dancing26]

No problem at all, always feel free to reach out if you need and all the best with everything! Xx

[Leahgal]

Hi. I am also new here but my experience sounds similar to you. I have had bowel issues for years and sudden worsening with vaginal bleeding during my cycle, with sex and pelvic pain. Thankfully my ultrasound did show endo this year, although one last year when I had immense pain did not.

Have you had a check for abnormal cells by colposcopy clinic? Worth checking in light of pain and bleeding with sex and also swabs for any infection? Mine were all clear and I have just seen an endo specialist and got my diagnosis and treatment plan. Good luck and hope you get some answers.

[Dirty_dancing26 in reply to Leahgal]

Thanks so much for sharing I really appreciate it! What is a colposcopy clinic? I’ve had smear test and swabs done and all came back fine! That’s been my main struggle that every single test is negative but I know something is wrong! So frustrating! Glad you got some answers and are getting a treatment plan!

[Leahgal]

Hey. A colonoscopy clinic is a gynae clinic specifically looking for cell changes. Even if your smear is normal, if you still have symptoms push for a referral as they can do a fuller examination and may spot something? I hope this helps. Beat wishes.