Adenomyosis advice

[Potts22]

Hi all,

I was diagnosed with endo after a laparoscopy in 2022, and about 2 months after the surgery I started to suffer from pelvic pain and lower back pain, which I have never had before and it didn't seem to be linked to any injury etc. I wanted to share what happened next in case it's useful for anyone!

I have spent the last 1.5 years endlessly going to gps and three different hospitals (!) and every doctor dismissed my pelvic/back pain as having nothing to do with endometriosis. I felt certain that it was connected and kept pushing for help, which was an incredibly emotionally draining process. In the end, I happened to move house and went to a very good GP who referred me to a different hospital to have a scan. I've had so many scans over the last few years, so I wasn't very hopeful, but it came back with evidence of adenomyosis. My gp said that it is likely that this showed on previous scans, but that many doctors do not recognise the signs. Basically, don't give up if your pain is dismissed!

Now that I have the diagnosis, I'm still none the wiser about what I can do to help with the pain! I've been going to a private women's health physiotherapist which helps a bit. Does anyone have any advice?

[BikeRiderGirl]

Hi! I have adeno as well, and had exactly the same symptoms as you! I have a merino coil which has made the world of difference. It took about 9months to really kick in but I've not had any pain since really. The physiotherapy sounds great, I also did that for a bit too but there aren't any specialists near me.

[Potts22 in reply to BikeRiderGirl]

Has the coil helped with pelvic pain too? I'm a bit concerned that it would aggravate it?

[BikeRiderGirl in reply to Potts22]

Hi! I had pelvic and lower back pain and it definitely helped me

[Potts22 in reply to BikeRiderGirl]

Thanks so much for this - you've given me some hope for the future x

[Sunset-lady]

Lots of women go on zoladex or prostrap to block hormones and thin the lining. It puts you in chemical menopause but it's effective.

[Potts22 in reply to Sunset-lady]

Hi there, thanks for this. I'm in my late 20s so I'm really not keen on this option!