Hi! Advice please :)

Hi everyone,

I was diagnosed with endometriosis in October last year, and I've just seen a new specialist gynae who thinks I might have adenomyosis...

My first gynae never mentioned anything about it, and it was never mentioned when I had my ultrasound last year. He wants to get another one to see about possible adeno, but I was wondering how it could have been missed the first time? I thought it was relatively easy to pick up on ultrasound, especially during a transvaginal scan..

I also had a laparoscopy in October to diagnose the endo and they said my uterus looked fine, though not sure how it could have been missed.

Just wondering how you all were diagnosed and if you had any advice going forwards for me?

[Hidden]

I went to see the consultant with fibroids. He told me he didn’t think that they were causing me pain and thought it was adenomyosis. I’m having prostap injections to turn my ovaries off. If this stops the pain, which up to date has, I can have a hysterectomy. I got the pain when my period was due.

[JojoA]

Hi- I had an MRI in the end. They kept suspecting fibroids and used ultrasound to check, but a doctor suspected adenomyosis as sysmptoms didn't fit. Now back to doctor to look at treatment options as also having fertility issues. I'd ask for an MRI.

[Hidden]

Meant to update this! I had my ultrasound on Friday, and whilst I've not had any official results from my consultant the radiographer told me during the scan that he could see both adenomyosis and polycystic ovaries. Now just playing the waiting game until I see my consultant (he wants me to have a couple of periods hormone free and wait and see how I am) but I'm pretty uncertain about where I go from here...

[Hidden in reply to Hidden]

I guess you will have the prostap injections like me. Be prepared for hot flushes and waking up in the night. I haven’t had pain since on the injection.

[Hidden in reply to Hidden]

Ugh, I've heard a lot of people have horrid side effects... I'm just about to start uni had my scan and radiologist told me I had adenomyosis... Consultant didn't want to see me until the end of the month but I've had to book and appointment earlier as couldn't deal with not knowing the next steps. Given the side effects I've had before with other forms of contraception I've not got much faith in prostap - did your side effects settle in time?

[Hidden in reply to Hidden]

No I have hot flushes all the time. The nausea isn’t often and doesn’t last long. My stomach is bloated. Tend to wake up every night hot. If you have the injections buy yourself a fan.

[Hidden in reply to Hidden]

God, is there no way to combat these symptoms?

[Hidden in reply to Hidden]

I don’t know if you can have HRT, maybe worth asking?

[Hidden in reply to Hidden]

Yeah, potentially. Thanks for the advice, my appointment is on the 6th so fingers crossed I'll find out some more stuff then!

[Kezza1977]

Hi h_grahh I’ve been having pain for years & went to 3 different GP’s & on my 3 trip I was sent for tests, it confirmed I had a large cysts on my ovary but I had bleeding in between my periods & after intercourse to. I had the strangulated cyst removed in March & had a hysterectomy end of June & prolapse repair, went to see my consultant today who told me the pathology report confirmed Adenomyosis of the uterus & that’s really the only way to cure this. My prolapses were so severe I may need further surgery to repair the back wall next year.

Hope you get answers & feeling better soon xx

[Hidden in reply to Kezza1977]

I'm still young so as much as I'd like a hysterectomy as a way of getting rid of this, but I doubt any surgeon would do such drastic surgery when I'm 19 with no partner, and personally don't want to have a hysterectomy just yet. Hoping I can get this under control with some hormonal medication etc thanks for your input xx

[HellyLlewelly in reply to Hidden]

Just wanted to offer you a big hug you are so young to have this all going on. Good luck with your treatment x

H.

X

[Hidden in reply to HellyLlewelly]

Oh, thank you <3 I really appreciate it, that's so sweet of you to say.

[HellyLlewelly in reply to Hidden]

How are you lately?

[Hidden in reply to HellyLlewelly]

messaged you xx