What symptoms do you have with adenomyosis

[Charts]

When I seen a gynaecologist back in January she said suspected adenomyosis. What are the symptoms as I have never heard of it until then.

[Tatta29plus]

I had a CT scan and was diagnosed through that but I haven’t had any further test yet. I get random, mild pelvic pain and urgent urination. That’s about it. I read some have severe symptoms and some have none at all. This leaflet was useful for me.

guysandstthomas.nhs.uk/reso...

[Angel71]

Hi,

I had adenomyosis and the main symptoms for me where really bad pain inside the vagina and lower pelvic area and exhaustion.The pain was worse with my period but it got the the point that it became constant. In the end as I could no longer cope with the pain and also had endo stage IV and fibroids I had a hysterectomy.

[XxSarah in reply to Angel71]

Hi Angel71

Can I ask if your fatigue/exhaustion improved after hysterectomy? I have pretty much the same as u and one of my main issues is the exhaustion. I’m currently being told to take some time to see if I want hysterectomy and a big thing for me will be if others fatigue symptoms improved after?

Thanks

[Angel71 in reply to XxSarah]

Hi,

My recovery after my hysterectomy was quite slow as I had a total hysterectomy and both ovaries removed, so I suffered from post op fatigue for a long time. However once I recovered fully from the op I regained my life, I exercised and was full of energy and pain free for 5 years. Unfortunately in the last 3 months suddenly I started having pain again inside my vagina and feeling totally exhausted. A ultrasound scan showed what it looked again like endo behind the vagina and on my bowel so I had a laparoscopy to get it removed. However it seems that what was seen on scan it's not active endo but scar tissue/old endo left behind. So it's still unknown where this pain comes from and I have follow up next week to discuss.

A hysterectomy is a big decision but unfortunately as adenomyosis could not be removed for me was the only option that in the end worked.

[Charts]

I feel exhausted all the time these days. I'm debating whether to get a MRI scan on my lower abdomen as I'm having one on my upper abdomen. I'm seeing a gynaecologist tomorrow privately so I'll see what she says