Does anyone have adenomyosis?: Does anyone on... - Pain Concern

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Does anyone have adenomyosis?

Itsallinthehips profile image
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Does anyone on here have adenomyosis? How do you live with it?

Where you ttc or have you since?

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Itsallinthehips profile image
Itsallinthehips
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Krawlins profile image
Krawlins

Hello

2017 I had a hysterectomy as had quite a severe prolapse and either a thickened or thinned endometrium? The left my ovaries intact because apparently they were pretty dried up anyway. When I eventually had my follow up appt with surgeon he told me they found I also had endometriosis and adenomyosis, that was it, didn’t explain any more than that so I’m none the wiser. I understand from googling since that the two conditions are pretty similar and that hysterectomy doesn’t necessarily mean they won’t come back. I have a lot of pain in pelvis, bladder, kidneys and two weeks ago told I have a kidney stone now, I thought the pain might have been adhesions as I’ve previously had reconstructive surgery for breast reconstruction taking fat from my stomach, I’m in constant pain as also have degenerative disc disease, I suffer widespread pain with arthritis too in hands and feet.

Have you been diagnosed with adenomyosis, will anything be done to treat or remove it, I would be very interested to hear what you have been told it actually is??

Kay

Itsallinthehips profile image
Itsallinthehips in reply to Krawlins

It’s adenmyosis , bulking of the uterus, my uterus walls are ruined basically, I only found out as I just had a miscarriage recently and are ttc and now they’ve found this. Yeah they told me hysterectomy is the only way to get rid of it and even then it’s not 100% but I want another baby I’m only 28 😔

Krawlins profile image
Krawlins in reply to Itsallinthehips

Sorry to hear you have this and suffered a miscarriage, do hope you'll be able to have another baby in the future. What is ttc? Can only think of tender to touch? I sometimes wonder if mine has even gone, since I feel so uncomfortable in that area, hard to know what the pain is anymore. Hope your medical team look after you well x

Itsallinthehips profile image
Itsallinthehips in reply to Krawlins

Trying to conceive. What treatment did you get?

I hope so thank you for your kind words x

Krawlins profile image
Krawlins in reply to Itsallinthehips

No treatment offered, I didn’t know I had either condition till I was informed after hysterectomy, I’d had lot of internal pain I thought due to prolapse but I always felt as if I had pelvic inflammatory disease. Suffered loads of uti’s over the years but this wasn’t discovered till they finally did the hysterectomy, I was 56. It dealt with the prolapse I guess but not with pain so perhaps I’ve had this stone many years?? I hope they can offer you some treatment to help, with any pain and especially ttc xx

Itsallinthehips profile image
Itsallinthehips in reply to Krawlins

I’m sorry you went through so much!

Thank you I do to it’s just one thing after another since I was 17 with my health it’s really getting to me now x

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