Diagnosed with endo at 22, now 47 in a bit of a mess -Help I'm confused!

Hi.

I'm new here and would really appreciate your views. I was diagnosed at 22 with endo and chocolate cysts through laparoscopy and was given danazol for a time to stop my periods but no other treatment. Fast forward 25 years, 2 babies and 1 miscarriage later. Throughout this time I have always had back problems and paid privately for years for physios, osteopaths, chiropractors etc but didn't ever resolve the problem.

As I was advised that pregnancy and breast feeding was the best cure for endo ( all those years ago) I didn't connect back pain with endo as I thought it had cleared and just plodded on and on. My periods were never really a problem, although I suffered with horrendous pmt, night sweats, breast tenderness and all the usual stuff!

However, things changed in my early 40's with heavy painful periods which the doctors always put down to my age! This included frequent urination and constipation but again I was just fobbed off with the 'age' thing. My back pain came to a head last summer when I started to suffer from back spasms which were debilitating. Eventually I was referred for an mri scan which showed up a bulky uterus but thankfully, a healthy spine.

I have since had an ultrasound scan which has revealed fibroids. I have an appointment in April at my local hospital under general gynae and sit here wondering what they will do. Has the endo gone (although I realise it probably hasn't as I know there's no cure), is my pain from fibroids or endo, will they offer me another laparoscopy, will they suggest hysterectomy, should I ask to be referred to Bsge centre? A million questions but your views would be appreciated 👍🏻

2 Replies

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  • Definitely worth getting a referral to find out what's going on. I have fibroids but they have never caused me pain, just contributed to my heavy periods due to their large surface area.

    I have a Mirena which keeps the uterine lining thinner and therefore make my periods lighter. For context, I'm 48 and have suffered from heavy periods since my teens, but diagnosed with adenomyosis at 35. I'm on my third Mirena which should see me through to menopause.

    Hope you find the right solution for you x

  • Thanks for your reply. I guess you're right - I do need to find out what's going on and make sure I ask the right questions. Being patient is a real test in these situations! X

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