Hi! I've had a failed hysterectomy. Had c... - Endometriosis UK

Endometriosis UK

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Hi! I've had a failed hysterectomy. Had chocolate cysts (largest 12cm with which they removed the ovary), fibroid's etc.

rainey6373 profile image
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Been told I have a frozen pelvis (risk of having a bag for life if they did the job I was told). I was on Prostap 3. I have sought a second opinion but they won't touch me after my op record's. Now on Noresthisterone, for how ever long. I am nearly 40. Swollen joints, especially in the right hand, cold weather etc does not help, even though I take huge cod liver oil tab's, and cloudy urine if I drink coffee or have wine. Any advice? PLEASE x

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rainey6373
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hogg_katie profile image
hogg_katie

What exactly do you mean by a failed Hysterectomy? Could you explain in more detail? :)

Allieline profile image
Allieline

Hi, I was 40 when the specialists told me that my endometriosis was too extensive to operate and my last lap turned out to be only investigative. I've been told I risk bowel and bladder complications and may end up with a bag if more surgery is done. I had very large chocolate cysts when i was 30, these were removed. After my last lap I had a Mirena coil inserted, 6 months of Prostap and also Noristerone for a couple of months to stop the bleeding ( all at the same time) For me it has "worked". By that I don't mean the endo has gone, far from it, but that I feel better than I have for years. For the last two years I have had light periods with normally only a little pain. Recently, I've had a lot of irregular bleeding so going back to Gynae, I know a lot of people have had bad experiences with the Mirena coil and I was very concerned at having it. It has been fantastic for me, the pain for the first monrth was horrid and the bleeding with it was awful but its definitely been worth it to have the next two years feeling " normal". I'm also very careful to eat only a very small amount of gluten as it causes my symptoms to increase.

Don't give up hope. Keep exploring options, I hope you find one that works for you soon.

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