New things found on scan today - not sure what they mean? Help?!

Hi all, I'm a 43 yr old who was diagnosed with endo at 27. I've had lots of endoscopies and two lots of surgery to help get rid of lesions and the endo itself. I have stage 4 endo. The pain has been getting gradually worse since my last op five years ago. My GP sent me for a scan today. With the sonographer giving me a letter for the GP to forward to my specialist - saying: I have a slightly bulky uterus. That There is an anechoic fluid area within my myometrium in the posterior wall of my uterus adjacent to the endometrial cavity. Measures11x8x11 mm. She has queried it may be a degenerating fibroid?? It is separate to the endometrium which is thickened to 13.2mm in the funds.

Can anyone tell me if this means I'm gonna have to have the dreaded hysterectomy that my specialists have pushed for for many years?

Thanks for any advice x

4 Replies

oldestnewest
  • Hi.i don't have endo but was diagnosed last month with a large fibroid and another that was degenerate fibroid.i was told I needed a hysterectomy due to the size which had made my uterus 30cm in size.im now two weeks post op and talking to other ladies while in hospital you don't always havto have a hysterectomy and at a guess they will arrange an mri scan for you for it all to be confirmed but I wish you good luck and don't let them push you into anything you don't want to dox

  • Hi - the more pressing issue is your endo if you know you have stage 4 and haven't had treatment for 5 years. You don't say what your symptoms are but things have moved on since then and we now have specialist centres where severe endo should be treated. Click on my name and look at my post on Pouch of Douglas endo to see if you identify with it and the one on how to access a specialist centre. I strongly advice that you get a referral and they will then investigate the issue with your uterus too. Feel free to message me if you have any problems. x

  • Hi Lindle. Thanks for your reply :)

    When first diagnosed I was told I had endo on my utosacriel ligaments and my ovaries ( left one worse) and in the P.O.D. I had surgery to sort this and then was put on synarel.

    I had to have a laparotomy 5 years later (after two babies by c section) as I was in incredible pain. The specialist tried to go in keyhole but said I had a wall of lesions that meant she couldn't help. So I had to have the laparotomy as my omentum, small bowel and large bowel were adhered to my anterior abdominal wall. It wasn't even possible to see my uterus, tubes or ovaries.

    I was then filled up with a liquid called "adex " or something like that to try and stop the sticky adhesions forming again.

    6 years later after depo and prostap and being told it was time to have a hysterectomy - I managed to find a consultant who said I didn't have to have a hysterectomy - he operated via keyhole to remove lesions etc. I can't find a copy of his report from the op and I can't remember what he did - going to get a copy from my GP.

    Fast forward to today - getting worse and worse periods - stupidly heavy and with big clots for the first 2/3 days and they are lasting longer and longer - 7 days average - some lasting 8 or 9 now :(

    I'm not very regular - so can be anything from 26 days to 39?!?

    Get very bad pains on ovulation. I'm regularly getting very bloated and have bad pain with it - I'm having to undo skirts and trousers as they end up way to tight when the bloating starts :/ not convenient when I'm a teacher ! :/ Terrible bowel problems at that time and when I'm on my period. I'm going from awfully constipated to diahorrea which is exhausting :/

    Also get terrible pain when I need to go and sometimes when I sit I get s terrible shooting pain up my anus. Lots of pain on my left side all the time. Scan I've just had shows my left ovary is stuck down. I'm also having trouble with waterworks - I need to go all the time ! Can't hold a wee in for the life of me ! :/ As for sex - OWWWW!!!! So in general feeling pretty rotten :(

  • Hi - it sounds like you had what is called a frozen pelvis 5 years ago when all your organs were effectively immobilised with adhesions. Two C sections and an open lap won't have helped. You have all the symptoms of extensive rectovaginal endo that is affecting your bladder too. You need to be seen by the most expert of experts so can you private message me when you get the report of the last lap you had to see what was done. x

You may also like...