Recently diagnosed

[Teal81]

Hello everyone,

I am 23 and was diagnosed with adenomyosis 3 days ago.

After years of suffering with irregular periods and extreme pain I got referred for an ultrasound. Due to the current situation I got my results a month later via the telephone. My doctor told me I had it and that was it really, no follow up or advice on what I should be doing.

Should I be asking to speak with a consultant to get a better idea and plan?

I am reaching out just to hear others experiences and get some advice on what I should do next as I feel completely lost.

[AllthatGlitters]

Yes definitely, when I got my results from my GP she explained exactly what it was, what medication I would be on and possible surgeries.

X

[Moon_maiden]

I’d agree, you should be getting a referral and decent help with pain from the GP. It’s awful when they are lacking in care.

[Lindle]

I would apply for a copy of the scan so you know what has been seen. This is the guidance (link to pdf):

bma.org.uk/advice-and-suppo...

[CaptainJemima]

Just adding my two cents to say, absolutely you should ask for a follow-up! They can't leave you hanging like that with no information. I would ask to be referred to a consultant who can talk to you about your options. I love my consultant, he doesn't talk down to me and entertains all my questions, and acknowledges that everyone's experience and decisions are different. Good luck x

[Hidden]

Hi Teal,

Yes, it's worth asking for follow up, perhaps to a gynaecologist.

There are treatments available to make it more comfortable.

There's a talk (recorded) on the topic of adenomyosis on the Endometriosis UK site here:

endometriosis-uk.org/adenom...

[Adeno2020]

Hi !

I found out I have adenomyosis almost 2 years ago I was 22 !

Again they just gave me my diagnosis that was picked up in ultrasound and gave me a printed out leaflet and that was all! Since then I’m also suspected endo, and some ultrasound come back with my visible adenomyosis and some normal which is really strange! Ask for referral I’m only being seen by gynae due to suspected endo they always put my adenomyosis to the side which is annoying!