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Endometriosis and high calprotectin?

Posted , 3 users are following.

Bellaboo1
Bellaboo1

Hi

After months of pain, constipation, stomach acid, stomach pain, oesophageal pain, peeing blood during my period (lots of it) and numerous trips to the doctors, I have now been told that I have high fecal calprotectin. I'm due to go for a bladder biopsy at the end of the month to take the cluster of blood vessels the urologist found during a cystoscopy and I am also getting the mirena coil at the end of the month too. After 2 poo tests my doc rang me today and said I have slightly elevated fecal calprotectin at 160 and I'm wondering if I have got endometriosis, could it be the reason for the calprotectin/constipation? I've also gone from 9st 7 to 8st 13 in about 3 months but eating loads and have recently started with squiggly lines in vision followed by a headache now and then. I haven't been diagnosed with endometriosis yet and I think it's going to be the urologist who finds out for me over the gynaecologist who was pretty much useless to be honest. My doc is going down crohns/ulcerative colitis but I'm thinking is everything I am experiencing hormone related? Oh and I also have a prolactinoma which I take cabergoline for. If anyone has any ideas I would be so grateful for feed back as I've seriously had enough now. I'm taking omeprazole, paracetamol, tramadol, vitamin d and cabergoline.

Regards

Bellaboo

0 likes, 8 replies

8 Replies

  • dee35669
    dee35669 Bellaboo1

    Posted

    Oh dear, sounds very complicated. I had endrometriosis of stage 4 + fibroids and cysts on my ovaries. 3 weeks ago i had an hysterectomy and they removed everything. All i can say that i was having really painful periods and i was fed up.

    Just one thing, you said you are having tramadol, be careful, coz you could get addicted !

    Hope everything gets sorted for you.

    I got so fed up , at the end i went to private hospital and it got sorted soooo quickly.

    Xxxx

    • Bellaboo1
      Bellaboo1 dee35669

      Posted

      Hi

      I hope you are well, a total hysterectomy is a lot to go through. How old are you?

      I have been on tramadol for years on and off for back pain/surgery. Hopefully I'm on the road to get well again now. It's the weight loss that's more worrisome to me than peeing blood right now but hopefully it's nothing that can't be sorted and also everything is linked to one problem.

      Bella xx

    • julie59834
      julie59834 dee35669

      Posted

      Hi Dee

      Hi, was wondering how you are feeling after your surgery 3 weeks ago? How long in hospital? I hope your recovery is going well and you can drive and get out and about soon.

      My gynaecologist has recommended a total hysterectomy, but I am still trying to decide if I can cope on meds until menopause comes (54) but so far had a bad experience with Esmya and am now 3 weeks in to Zoladex implant.

      Very unwell over last 3 weeks, not sure if withdrawal of Esmya or the Zoladex. The way I feel at the moment I certainly feel much worse on a daily basis and so sick, that I am not sure it was such a good swap for the heavy bleeding and cramps from multiple fibroids and endometriosis.

      Just want this nightmare to stop!

      Get well soon

      Julie

    • dee35669
      dee35669 julie59834

      Posted

      Hi Julie,

      You know i was just thinking today that if i hadn't had my op, i would have had my periods today and would have been in a terrible pain!

      I am so glad its all over. 3 weeks have gone and i am almost back to the normal and pain free life ! I was in hospital for only 4 nights. I was told to moved around, and it's true, the more mobile i was, quickly i did recover. You know i was on Esmya for 11 months and then when stopped, my periods came after couple weeks, and the pain was just unbearable. Never had it like before Esmya. I suffered like that for 3 months and as my hospital appointment was quiet far away, i decided to go private. So had it done quickly.

      My surgeon said that my Endrometriosis was of stage 4 !

      No wonder i was so much in pain.

      By the way am 43 years old.

      Hope this helps xxxx

      Dee

  • aitarg35939
    aitarg35939 Bellaboo1

    Posted

    It's good to hear from you again, and even better to know that docs are taking you seriously and are doing tests.

    We're all rooting for you, hoping that they'll find only easily resolved issues -- which they'll then resolve!

    • Bellaboo1
      Bellaboo1 aitarg35939

      Posted

      HI

      Thanks for replying. I'm so fed up, extremely tired and worried about the weight loss more than anything. Now that they are listening is a good thing but now I'm more worried as I'm on the road to finding out and I'm kind of scared in case it's something really horrible if you know what I mean. I want to be well and go get a job. Hope you are ok x

      Bella

    • aitarg35939
      aitarg35939 Bellaboo1

      Posted

      Yes, I understand those fears or worries. I hope they find it's something more fixable than endo, Crohn's, etc.

  • julie59834
    julie59834 Bellaboo1

    Posted

    Hi Bella

    Wow, you are certainly going through it at the moment. So many issues to deal with at the same time. I hope you get some proper diagnosis soon, so you know what you are dealing with and you can start getting the treatment you need to feel better soon.

    You just need to keep pushing the doctors for answers and don't let them fob you off.

    Keep us updated on your progress

    Take care

    Julie

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