Looking for Adenomyosis resources

[Jademillhouse]

Hi all,

I have my 2nd lap yesterday for endo excision and was diagnosed with Adenomyosis which was a surprise. I spoke to the surgeon briefly after surgery and am now waiting on a follow up appointment and MRI scan

I was wondering if anyone could point me towards some good reliable resources on adenomyosis so I can learn and understand more about it and treatment options before I go in for these appointments. Thanks

[AnnieAnnie]

Hi, I am sorry you have had this diagnosis. I was first diagnosed with suspected adenmyosis back in 2018. The reason I was told by my gp that it is suspected, is because hysterectomy is the only time you can be diagnosed. I have since had a number of different scans, a lap, hysteroscopy, transvaginal scans and since 2018 have been told a further 3 times that my suspected adenmyosis has been seen. As far as I am aware, again my original gp told me the only treatment is sadly hysterectomy (this isn't an option yet for me as I haven't been able to conceive) then it's management of the symptoms xx

[Adnalim]

hello, unfortunately I don’t think there is much treatment for adenomyosis besides hysterectomy. When I spoke to my consultant she said they can not confirm this disease just through laparoscopy or MRI.

However there is some helpful information to help pain associated through diet etc- but over all in terms of medical treatment I think it depends how much they can do for you before deciding on hysterectomy

[Hidden]

I have suspected adenomyosis recently seen on a scan. I’d never heard of it before. Treatment wise, the doctor has suggested a coil following a hysteroscopy. I have had ongoing bleeding for nearly 3 months with it and it’s been quite horrendous. I have made changes to my diet and started taking supplements that I’m hoping may help. I’d rather not go down the coil route if at all possible so trying the natural approach for a couple of months first to see can I make a difference.

Good luck !