Adenomyosis and hysterectomy

[Jasmineleah]

I’ve just been diagnosed with adenomyosis and I’m in so much pain every day. It seems my uterus is swollen and is pushing on nerves. It’s ruining my life as I can barely drive let alone walk. I used to love hill walking but haven’t been able to do that for months now. I really want a hysterectomy but my Gynaecologist doesn’t seem keen. I’ve already had children so I don’t understand why she seems to think it’s ok for me to stay in this pain. Could anyone give any advice on what I can do? Has anyone had a hysterectomy because of adenomyosis?

Thanks Steph

[AllthatGlitters]

Hi Steph I haven’t had a hysterectomy yet due to adenomyosis but I am seeing a specialist soon as I was told my next treatment would be a hysterectomy. I don’t have kids, I explained how it’s effecting my life and I have gone through laparoscopy and ablations, for them not to have worked. As you have had children and this is what you want, you need to be very firm with the consultant, tell them what you expect and ask them how you can be expected to live with daily pain etc ..... You have to do what is best for you, if you don’t get a consultant that will give you that surgery, go to another one. I have seen 4 doctors so far and they have all been supportive of a hysterectomy.

Good luck. I know it’s difficult xx

[Hidden]

Hi Jasmine,Could you try requesting to be referred to a different gynaecologist? It might be helpful to have a second opinion.

[Pacman12]

Hi there, I had a hysterectomy a few weeks ago as my consultant thought my uterus was the main cause of my pain - at a previous lap he said it was inflamed and bulky. I’m still waiting on the full histology results from the op but he suspected adenomyosis or possibly fibroids. He also took away some endo but thought the main issue was my uterus.

Could you seek referral to a different consultant? Before agreeing to the op I did seek a second opinion on my remaining treatment options via a request to my gp to refer me to a consultant at a different hospital. It was actually my occ health dept at work who suggested this and I think without their support I wouldn’t have pushed for it. I got hold of the surgical notes (which I could not make heads nor tails of!) and the photos from my previous lap to take with me and sent an email to the new consultants secretary in advance to try and make things efficient.

I know navigating this is not easy, especially when you are in pain and it’s preventing you from doing the things you love. Take care, I hope your pain is manageable today, happy to chat via DM if it’s helpful xx

[sophiestickate]

Hi, I have had an adenomyosis diagnosed in February, and hysterectomy on 15/03. I feel ok. My doctor suggested this solution as anything else was not working. He was very supportive, and professional, not like the previous gynae, who was trying on me 1001 solutions and leaving me bleeding in pain and miserable. My back pain is over now, and I am slowly gradually recovering. I can only understand an support your struggles as this is really hell of a pain and discomfort to go through all of this. Try to change gynae..