Taking HRT with a history of unusual fibroid (parasitic)

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I have been struggling with my health for 6 years (when I was 35) it started with fatigue and headaches then skin issues (tiny blisters on face and rashes on neck & forearms) then horrendous bloating, abdominal pain and finally crippling back pain. After a lot of being messed around and overlooked by Drs, I was finally found to have a large chaotic and bizarre mass, which was removed in 2019. It turned out to be a pedunctulated fibroid (growing outside of uterus) which had partially degenerated and then became parasitic, attaching itself to my bowel, kidneys, liver, pelvic walls, absorbing blood and nutrients to grow. It also had a huge blood filled cyst. I was treated in an endometriosis centre as they thought it could be endo but none was found and pathology came back as a fibroid. The surgeons said they'd never seen anything like it. I had 3 months of GnRH analogue to put me into chemical menopause before surgery to shrink the mass and make surgery less risky. I had extreme menopausal symptoms with that- I could barely function.

I had complications after surgery (severe anaemia and pneumonia & pleuracy) so recovery has been slow but I did improve a lot- back pain and bloating now totally gone. Fatigue has improved a lot- I could barely function before and now I can have a life. But, I still feel there's something not quite ok. I still feel sluggish, poor quality sleep and pretty much every menopause symptom.

After the chemical menopause, my period returned and I am regular (though cycle length varies between 25 and 33 days and I was previously always 28 days). The menopause symptoms never fully went away after this and since January this year, they started to increase again and my fatigue worsened. I paid to get a hormone profile done privately and my oestradiol was low and FSH high. I went to my GP who said she'd test my hormones but they came back 'normal' though I don't actually know what was tested and what the levels were. I thought this seemed odd given my symptoms and the private test, so I paid for another private check this month and my oestradiol is literally on the line between normal and low and my FSH still high.

My GP has prescribed me Femoston, which I've just started yesterday.

I have no faith in Drs after everything I've gone through and this is a new GP for me- I wasn't particularly impressed with her assessment of me (I first went to her with this right at the start of the covid outbreak so she's probably super overwhelmed). I have a few concerns and questions, which I'd love any advice about...

  1. My history of having a very unusual fibroid and taking estrogen- I've read in the pamphlet that this is something to discuss with the GP- I brought it up and my GP had nothing to say about it and in the end I asked if I could be sent for an ultrasound to check whether I have any and monitor- she said she referred me but they won't be doing routine untrasounds under lockdown...so I am worried about this. Does anyone know how risky it is to take HRT if there is a history of troublesome fibroids?
  2. I'm also wondering if I've actually been perimenopausal all this time- since my issues started 6 years ago. Could going into peri cause my fibroid (which was relatively small back then) to partially degenerate and then grow the veins to my organs to survive my body's reduction in ostrogen? Underlying all my health issues, could it have been perimenopause all along?
  3. If I have been perimenopausal all this time- since 35 and having quite significant health issues as a result, should I be getting my bone density checked? I have a lot of joint pain which I've attributed to the chemical menopause but could this be issues with my bones?

I know I have an unusual history but if anyone has any advice, i would be very grateful.

thanks

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1 Reply

  • Posted

    Hi Betty, so sorry to hear about your situation. am at work right now can't really say much, but I would suggest that you should join the group on Facebook call menopause support group which I belong to as well, you can get so many support and advice from so many different women who are going through the same thing call 😡 menopause. Also there's another one called menopause support network they are both good. Trust me that you wouldn't regret it, reason because I have been through a lot like you, but been on these two groups has really helped me. Please take care of yourself hope to see your name on the group one day. ❤️❤️

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