please help

[Chopper7]

Is there any evidence known for faecal calprotectin ( FCP) levels to suggest endo ? I’ve Always had painful and heavy periods since I got them but suddenly have gotten weird and painful symptoms since April/may this year , I have done two inflammatory tests and , one in April and one a few weeks ago and both are the same - over 600 , which suggests IBD , I’ve had a colonoscopy, small bowel mri and video endoscopy and all were normal. I have a gynaecologist app on the 30th so I’m really hoping fingers crossed they will suggest something more , I have also had pelvic ultrasound in may that was normal , I get “period “ like pain nearly everyday , worse before during and after and ovulation , and when I feel my lower abdomen it feels really tender and painful , my pain is usually around my right lower abdomen but even on right sometimes and also under bikini line . Someone please has anyone experienced anything like this , I’m in pain everyday , I take tramadol for pain meds

[Tangoandmax]

Hello, was the ultrasound one arranged by GP? Standard sonographers are not equipped/trained to spot endometriosis therefore, like most of us results are normal despite things being quite bad/wrong. I have 7 years of ultrasounds all normal, recently been diagnosed with deep infiltrating endo and adenomyosis through surgery.

Keep a diary of your symptoms. Literally every day. Gyne consultants take this more seriously than just your word (ridiculous). They should offer scans which should be with individuals with more knowledge of what they’re looking for-do double check though that those scanning/reviewing have a special interest or are a specialist to ensure best results xx

[Chopper7 in reply to Tangoandmax]

Hi yes the ultrasound was arranged by gp and / doctors in ward with no gynaecologist .. at the start of where it all began it was suspected appendicitis then Crohn’s and since then doctors been convinced it was Crohn’s but since then my symptoms have been way worse and I know something is wrong because im in constant pain especially during before and after my period with intense pain I nearly pass out and have bad nausea i know my body and it’s not my normal

[TennisAM]

Hi, Sorry to hear this. It's hard to deal with painful and heavy periods, then having this daily pain since the spring. Its a lot to handle.

TangoandMax is right, most ultrasounds don't show endo unless it's obvious such as an endometrioma (chocolate cyst on the ovaries). Endometriosis cannot be ruled out via an ultrasound.

The other thing to know is that MRIs can also only see obvious endometriosis (5mm or bigger). Sometimes it's as low as 60% accurate to see endometriosis. For example I've has stage IV disease twice, diagnosed via laparoscopy. Both times an mri was performed before, neither mri showed stage IV disease. Actually both mri scans showed tiny endo in one place. The other thing to know is superficial disease (stage I and 2) will not show up on an MRI scan.

Has your GP checked whether you are celiac? That could be causing the inflammation markers you're seeing.

Also I hope your GP/hospital told you but you can't provide a calprotectin sample when you've been taking NSAIDs like ibuprofen/naproxen etc. These can drive up calprotecin levels. I'm guessing they would've said in the hospital but just in case.

The other thing is did they consider microscopic colitis? It is another form of IBD that can't be seen via colonoscopy. They would need to send biopsies to the lab to be analysed.

Have they checked for infections of the bowel such as c-difficile? Or any other infections.

I can't see any studies showing a corelation between FCP and endometriosis severity or the existence of endo. The main study is from Asia and it was based on serum calprotectin (blood test) not stool sample and they still concluded there's no correlation between endo severity and calprotectin levels in the blood.

With regards to the endometriosis, the best way to know if you have it is to have a surgery. If an experienced surgeon looks around your abdomen to determine whether you have it, they can then excise it. Please note ablation (burning) is useless. Imagine burning the top of a creme brulee) the top is burnt but the cream underneath is untouched. Therefore when the burn the top of the endo, however much underneath is untouched and will continue to grow and cause pain. So if you are referred for surgery its important to ask if they will excise or ablate and where they will check in the abdomen. Its important they check everywhere in the abdomen. Sometimes these gynaecologists only check near the uterus, the uterus is the size of an orange so this is worthless.

Let us know how your appointment goes and try to remember the above if they try to say you don't have endo because of clear scans.

[Chopper7 in reply to TennisAM]

oh my goodness thankyou so much for this reply !! Feel like been getting nowhere my appointment is on 30th fingers crossed they can help , I haven’t been on ibuprofen since 2023 , and they haven’t checked for the infections but they did take biopsies which where negative , also a video endoscopy I just think it’s really strange how inflammation is showing but no camera test sees anything , tbankyou for this information I will keep it close to me and get back on here after the 30

[TennisAM in reply to Chopper7]

Have you veen referred to a bsge endo centre? Is there any.pain before or during passing stools?

Hopefully its a face to face appt. When you arrive for the appointment i would speak to reception and tell them you only want to see the consultant. At least then you'll know if they're any good etc

Good luck x