Adenomyosis

[Yousayvagina]

I have Adenomyosis. Does anyone else it or know anyone else who has it? It is almost impossible to find out anything about it

[CelestialFluff]

Hi, I have it! Endo in the walls of the uterus? I'm assuming it is similar to endo just in a specific place. X

[JulesUK]

Yes me too. Have you tried searching in the group? There should be quite a few posts about it as many people who have endo have it too sadly.

[Mavern]

Hello, I have had it. I had a very bad time for a very long time. It was not diagnosed until I had a hysterectomy. By the time I had it my pain was totally unbearable.

I am wondering if I have Endo, as although I had everything removed 2 years ago, I still have vaginal pain, and relations are unbearable.

Gyno told me I should get a trainer (plastic dildo) to make myself larger. which is the least helpful thing I ever heard.

I must admit, I am really fed up with the NHS on this, I have been going to hospitals for 30 plus years and basically been told again and again and again that they could not find anything.

amazingly, when they removed the womb etc, they found a load of tumours. and apparently that would explain the pain. No shit sherlock....

[Hidden in reply to Mavern]

Get the Ohnut, it really helps. Did you have pelvic floor therapy? This helps too. Go to a good Endometriosis surgeon to see if he can do something about Endo or anything else left behind....

[Clyders1 in reply to Mavern]

I'm hoping you still monitor this! Im wondering if you had scans and ultrasounds etc before and if they showed anything? I ask because I have been dealing with right side pain for at least 10 years. I've been to numerous doctors. I have had my right ovary and tube removed as they thought the pain was scarring from 2 ectopic pregnancies and this did take away the debilitating ovulation pain I was having every other month but I still have an annoying pain in my side every day and the first 2-3 days of my period is agonizing, I have been taking Tylenol 3's with codeine just to be able to sleep for an hour. I have large clots as well. I have had ultrasounds and laparoscopy and have never been diagnosed with endometriosis or adenomyosis however my new gynecologist suspects endometriosis and put me on Visanne which I had to quit after 2 weeks as the side effects were horrendous. I guess I'm just wondering did they see anything before the hysterectomy to indicate adenomyosis?

[Mavern in reply to Clyders1]

Hi

Yes I still get alerts.

Nothing found on any kind of investigation. The general feeling was that I was making a fuss.

Once the hysterectomy was done it was obvious. Maybe it's something impossible to diagnose without surgery.

I had lots of investigations. Things that should not hurt like a womb biopsy were excruciating.

I have heard very often about things that help others.

It's all a bit crap.

Better without periods though. But off to start endo investigations in a month or so. 40 plus years of adenomyosis is likely to have other consequences. So I am waiting to see.

Good luck. Push for hysterectomy if you can manage it.

[Clyders1 in reply to Mavern]

I am scheduled to see my gynecologist again in March and I am going to request a hysterectomy as I've had my kids and I'm tired of dealing with it all. Thanks for replying. Best of luck with the endo investigation, hopefully there's nothing there!

[Mavern in reply to Clyders1]

Most likely there is.

But it is what it is.

Hope it works out for you

[Lofty1589]

Hi! I was diagnosed with Adenomyosis two weeks ago (though officially cannot be diagnosed until a hysterectomy is performed) I’m only 20. Next Tuesday, I am going to begin infections to place me into temporary menopause for 3-6 months as that is my only option where I can still potentially have children. My other options were uterine artery embolisation or hysterectomy- neither want to be done by my consultant so I’m trying what I can in the hopes of having relief. I don’t want UAE because I’d like to be able to try for kids one day but no idea how my fertility is

[Hidden in reply to Lofty1589]

Hi, my reply and yours was removed, only thing I can add is that I've read a UAE is the only option if you want kids as it only cuts the nerve so you won't feel pain. It doesn't change how the womb is, so you can still have kids (if the womb can receive). I was diagnosed by MRI with severe Adenomyosis many years ago and still conceived 2 kids. I mentioned the other option as I only know them surgeons to look at all options and are the best trained in the world. Good luck.

[AllthatGlitters]

I have it as well as endometriosis. My GP gave me a print out from St Guys Thomas hospital which explains quite a lot about it, it’s like a fact sheet. It’s hard to deal with at times. I hope you have a good GP. X

[Lunadottie]

Another sufferer here. I had a hysterectomy earlier in the year and both ovaries removed. I was 41.

Apparently my womb was trying to invade my bladder and bowel which accounted for the excruciating pain all the time!

NHS website has some good info about it and I also found Google quite useful as it brought up quite a lot of info.

Good luck on your journey :]

[Romano1234 in reply to Lunadottie]

Hi, has the adeno pain stopped since your hysterectomy? Xx

[Lunadottie in reply to Romano1234]

Hi

I’m still getting pain where my non-existent ovaries are...I’m having an MRI at the weekend although I’m not sure what that will tell anyone.

It’s not anywhere near as bad as it was before my hysterectomy and oophorectomy but it’s still there...it might be endo...it might be something else. I’m disappointed because I was hoping I was done with this after 2 lots of surgery and years of pain

[Yotom]

I was diagnosed after an ultrasound 2 months ago - definitely relate to not finding out much about it. Will they look into whether you also have endo? My specialist couldn’t rule it out so put me down for a lap