Is this related?

Hi all. This is my first post. I was diagnosed with endo 25 years ago but luckily have managed to control the symptoms with the Mirena coil. I am now 48 and having issues again. Erratic and almost constant bleeding, pain around my waist on the right side, problems with my bowels. Over the last two years I have had a cyst on my ovary, had a hysteroscopy and biopsy and tests for diabetes insipidus. I believe I may be starting the menopause due to sweats, anxiety, aching bones etc but my doctor refutes it. I have recently been diagnosed as suffering with Proctalgia Fugax - does anyone else suffering with endo have this too?

3 Replies

  • Do you still have the coil? Has the cause of your constant bleeding been investigated? Have you recently had a laparoscopy? Was the cyst dealt with or did it go away?

    I'd ask for referral to a gynaecologist - if you are not already seeing one - and see if they will give you a laparoscopy. If you haven't recently had a ultrasound then that'd be useful as it can show cysts and polyps etc., which might be affecting your bleeding. The same with ensuring your smear test is up to date. If you have the coil and it's been in a while, perhaps it needs replacing?

    If you've had recent blood tests ask for a copy for your personal records. You can check your hormone levels then as if your doctor is refuting the start of the menopause, presumably they've tested your hormones to make that assertion.

  • Thanks for replying Mabes. The problem has been ongoing for the last four or so years. I told the GP that I felt the coil was not working as well and asked for it to be replaced but they refused as it had not been in for the 5 years (costs I guess). I went back a year or so later when it had ot resolved itself and had the coil replaced. This still did not resolve the problem so then I had the ultrasound which showed a cysts. 6 weeks later this has dispersed. The bleeding, constant need to urinate and pain in my right side at waist height had not gone so then I had blood tests - the symptoms had then been joined by aching bones, tiredness, headaches, severe anxiety. So ive been tested for the menopause, some cancer references, liver function, rheumatoid arthritis, liver function, kidney function, lupus. All OK. Then I had a hysteroscopy and biopsy, my coil was removed and replaced at the same time during this. The new coil does seem to be settling things down a bit and the biopsy was clear so it may just be a case of putting up with things and accepting this is the new norm for me now that I know there is nothing sinister (other than the endo) behind it all.

  • If you have had thyroid blood tests, get a copy of the results and go on Thyroid UK (on here) and post them along with your symptoms. It is possible you could be developing a thyroid problem. Unfortunately the NHS is very bad at treating thyroid problems, especially when they are slight or subclinical. It is definitely worth ruling out as a possible issue.

    It is also worth getting your vitamin D3 tested - you can get the GP to do this.

    The reason I say this is because the bleeding, pain and urination sound like one problem and the aching, anxiety, tiredness and headaches sound like another issue.

    Regarding the constant need to urinate, have you looked into interstitial cystitis? It can go hand in hand with endometriosis. This is something that can be looked into with urology testing. Have a Google as there are some forums for it and you can see if what other people are experiencing is something like what you have been suffering with. Also a tight pelvic floor can be an issue for some endometriosis sufferers and physio can help that, so that's another thing you could look at.

    Another option regarding the bleeding is endometrial ablation - it's only suitable for women who will not be seeking to have children anymore.

    Just because they can't find the problem with their tests doesn't mean it's not there... Just that they haven't found it!

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