It's adenomyosis not endometriosis!

Hi ladies,

Finally got my consultation today and it was surprisingly helpful. Considering it was this gynea consultants first day and I was his first patient lol!

I went in with a list of symptoms, what drugs I'd tried, my reaction to said drugs etc....very prepared I was! He read my list of symptoms, then read I'd had most of them since I started my periods aged 10. He felt really bad for me, he said he was a year older than me and couldn't even begin to imagine how horrible it must have been to live with chronic pain for 2/3rds of my life. I'd never thought of it like that before.

He showed me all my notes and what they'd seen in my laps (it really is a strange experience seeing your own insides in a photo). He said they'd only ever found a small patch of endo (not what I was told) and some scarring. He then said as norethisterone has helped my symptoms so much he is convinced I have adenomyosis.

He has agreed that I can take them for 6 months at a time and only have two periods a year until I'm at an age where I can have a hysterectomy.

I nearly burst into tears with relief. To be believed and be told that it's not in my head and actually receive some kind of sympathy from a consultant felt amazing. He's written to my gp telling him what he thinks and asking him to keep an eye on my bone density as the norethisterone can decrease it. With my HMS on top that could be nasty. He is also asking my gp to refer me to a pain management clinic, something I've never been offered before and have wanted.

The simple fact that I can tell people what's wrong with me now rather than "I have lady issues" is the best feeling in the world and now I've found something that really helps me I feel I can actually plan stuff and get my life back....or starting my life really.

Hope you ladies are having a pain free day


6 Replies

  • Oh, that's so brilliant, I am so pleased for you :)

    Will this guy be your gynae from now on? If I were you, I'd request to see him every time if you possibly can. Having somebody who understands not only the phsyical but also the mental side of things is half the battle, I think - i wouldn't have got through my endo journey without my fabulous gynae.

    Well done :)

    Lots of love, C xxx

  • Sorry to sound stupid what is adenomyosis? My consultant gave me the coil incase i have it. Yet to get a diagnosis on endo as ive had a lap 3 yrs ago so she doesnt want to trauma old scars so its a last resort x

  • Oh and where is this gynae? I think we all need to be referred to him lol x

  • lol Claire. He's at st richards hospital in chichester, west sussex. Adenomyosis is the endometrial lining found inside the muscular wall of the uterus. This is a good explanation of it that I found...

    hope this is helpful to you. x

  • thats really good news:) that feeling of relief that you finally know whats wrong with you and can start a treatment plan to improve your life:) really happy for you x

  • Hi, I have adenomyosis as well, it was diagnosed by MRI scan. I get confused because some consultants like mine say adenomyosis is a form of endometriosis then in books or online it says they are two separate things. I am a little concerned by what you say about norethisterone - I was on it from 2006 til this August, 3 of the years were taking it with no breaks as an endo treatment, and I was never warned about bone density. I've had the mirena coil fitted as treatment for the adenomyosis but so far, no relief or difference in pain. I agree it is better getting a proper diagnosis so at least I can explain what's going on, rather than the "I'm in pain and don't know why" line. I really hope this treatment works for you and the pain management clinc is a help. Good luck x

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