Looking for support and advice - Fibroid pain for 11 years, unsuccessful removal, dropped by gynae

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I have suffered with fibroid pain for almost 11 years. I haemorrhaged and this is how they were discovered after 2 years of no real investigation.

Attempted injections to shrink and then Myosure procedure proved unsuccessful. Insertion of Mirena coil stopped periods but not pain. Coil removed 4 months ago.

I get so much pain that I can't move let alone go around my day to day life.

Gynae have said fibroids don't cause the amount of pain that I suffer and have passed me on to the pain clinic (but covid has since prevented my appointments). We know I have fibroids. But as far as gynae are concerned, they have done all they can.

Am I just supposed to live with this agony? Please someone say I am not alone...

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  • Posted

    Hi Gemma, what you're going through sounds awful!

    I was diagnosed with fibroids 18 years ago (at the age of 17) and only last year upon going private have the fibroids been looked into and surgery booked. Due to Covid its been cancelled, still awaiting rescheduling. I had seen Drs and gynaes through the NHS and they were keen to get me to agree to a hysterectomy or total removal of my womb lining!!

    You are not alone in this. I have found patches from BeYou to have provided relief, and there is also a CBD balm they do which has helped me a lot too.

    Ask your GP to refer you to another hospital, finding a good gynae is like winning the lottery! Or if you can afford to, go private.

    Try the patches for pain relief, I hope you feel better soon x

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  • Posted

    Fibroids can cause horrible pain. You don't also have endometriosis or anything like that? Have you tried Fibristal /Esmya /Ulipristal Acetate for the fibroids? I took 2 courses. The first month on it was pretty horrible, but my cramping had become so bad anyway. So, I'm glad I stuck with it because it was very effective at shrinking my fibroids. Also, I had become so anemic, and it gave me a chance to address it, not bleeding at all for 3 to 4 months. It was wonderful. Just wish I could take it constantly. Now I still get cramping around my period, but it's not everyday. I can live with that.

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  • Posted

    I have been to the emergency room twice with so much pain and they don't care. I have a big fibroid pushing on my bladder. I am in constant agony and the need to empty my bladder is also non stop. How does anyone think one can live like this? I bet you if I had the means to pay fully for my surgery it would've been dealt with. Sorry to hear that you're in pain. The doctors don't seem to understand that this is very painful. Some fibroids don't cause symptoms but mine does and they could care less. I am so annoyed with the health system.

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