Adenomyosis diagnosis

[GabriJ]

Hiya, I had a scan today and the nurse said I also have adenomyosis as well as endo. Has anyone else had this diagnosis? How can you manage adenomyosis? Thanks x

[Whoisthis]

So the only sure fire way to know you have endometriosis and adenomyosis is via surgery?

She may of seen something but she can’t give a concrete diagnosis via a scan? You should be getting a referral for a laparoscopy to look further and then a specialist for surgery.

Could you get your actual scan results and maybe ask further question over their plans for you? They should be straight away helping you manage this.

Are you in lots of pain?

[Lily1986]

Hello.

I have stage 4 endo and adenomyosis.

I had the mirena coil inserted during last surgery, it hasn’t helped my endo much but it is keep the adenomyosis under control.

Best wishes xx

[Orla2]

Hi! I was diagnosed with adenomyosis through scans and was told the only way to solve the problem was a complete hysterectomy. I was in so much pain that I agreed to the surgery. I was on the waiting list for almost a year during which time I did lots of research. I suspected I had endometriosis as well, but was told that none had shown up on my scans. However during my procedure they found that I had extensive endometriosis and ovarian cysts and also confirmed adenomyosis. My cervix was stuck to my bladder so they were unable to remove my cervix. The recovery from the hysterectomy was a long and painful one but nothing compared to the constant pain I was enduring! I have had no pain since surgery, almost a year ago - fingers crossed that it stays that way!

[AllthatGlitters]

Yes I have adenomyosis.

I have had a laparoscopy and currrntly waiting for endometrial ablation.

I suffer with very heavy periods, currently on month 10 and can’t stop bleeding even on the pill. Labour like pains. Low iron. If that surgery doesn’t work I will need to have a hysterectomy 😢

I take naproxen daily to manage it, if this doesn’t stop the pain which a lot of the time it doesn’t I then have codeine or tramadol to take.

It’s ruined my life for about 5 years now!

X

[Noodle1984 in reply to AllthatGlitters]

Have you tried the lupron shot? It is what really helped stop most of the bleeding for me. The pill didn’t, double dose of vissane didn’t, but the lupron has been good except since adding the mirena 🤦🏻‍♀️

[AllthatGlitters in reply to Noodle1984]

Hi no I have been offered decatply. I have had ablation now, waiting to see if it works x

[GabriJ]

Thanks v much for sharing everyone x

[Marie2377]

Hi I don’t know what age you are or whether you would like to have children one day. Endometriosis can be operated and depending on what type of adenomyosis you have most of them cannot be operated on. I manage adenomyosis with a drug called Zoladex which has helped massively as I plan to have children one day. I was diagnosed with an MRI and laparoscopy. My adenomyosis is widespread (diffuse)and I have a bulky womb because of it. My endo was stage 4 and operated on via laparoscopy in 2017 and it hasnt came back. The adenomyosis is more difficult to manage but it is possible to. Good luck x