Adenomyosis symptoms getting worse - really stuck on what to do

[inigomontoyahwillcox]

I've had adenomyosis for years, probably about 15. Over the past year I started to get what I initially thought were UTI symptoms (doesn't actually burn when I week, but does immediately after) accompanied by a really sore (feels hot and burning) lower abdomen - it feels really inflamed. Initially, the docs investigated my bladder - nothing - and eventually it disappeared, but I have attacks of this which last a few weeks. Am currently in the midst of an attack and it's only really just dawned on me that this could be adenomyosis-related. The pain during my period has really ramped up, as has the bleeding (am often anaemic and need iron infusions). Oh, and have just been diagnosed with a small fibroid, which I'm sure isn't helping.

The gynae I saw a couple of years ago categorically stated I wasn't a good candidate for a hysterectomy as I had a surgery-provoked pulmonary embolism in 2018 which almost killed me, and they're now super cautious. I also can't take hormonal medication as it increases the risk. Does anyone else with adeno experience this type of burning/inflamed feeling, and has anything helped?

You need to see a gynaecologist for further evaluation.

Endometriosis could be the root cause of your current symptoms and this can affect organs like the bladder. It can also cause ongoing severe period pain and heavy bleeding. Any symptoms that are cyclical in nature and or get worse up to and including menses should be checked out to see if endometriosis is present. This is usually diagnosed via a keyhole surgery op called a laparoscopy.

And you are right to assume the fibroid is not helping either.

How were you diagnosed with Adenomyosis initially?.

I had Adenomyosis and fibroids, diagnosed by MRI. I suffered with similar symptoms for years. In the end, the pain was too much for me and I practically begged my consultant for a hysterectomy. I put together a compelling case and they agreed as I had pretty much exhausted all other options and had no quality of life. I appreciate why you might not want this given your history but it really is the only cure for Adenomyosis. During my surgery, they also found endo on my ovaries and I suspect I may have it on my bladder too, but my surgeon was not an endo specialist so I am having to be referred back to a specialist gynae now. It’s very common to have adeno and endo, so I would perhaps investigate whether it could be endo that is causing your symptoms, are there are more treatment options there. Do ask to be referred to a BSGE accredited endometriosis centre - I wish I’d known about this in the first place. It’s a truly horrible disease.

Hadn’t considered endometriosis. Initially diagnosed by ultrasound. Recently had another ultrasound as saw the practice nurse about possible perimenopause symptoms and wanted to see what options were available to me re HRT (minimal, as it turns out, due to aforementioned PE). She wanted to get a new ultrasound as it had been a while. Am supposed to be getting a call today to go over scan results so will ask for another referral to gynae.

Fortunately my local hospital looks like it has a BSGE accredited centre.