Adenomyosis. Anyone else have it (or knows what it is?!)

[notsobarrenmorebrokenbrook]

I may be posting this in the wrong place but I'm after some help / advice on what adenomyosis is. I had an ultrasound scan at a recurrent miscarriage clinic after 4 mc and apparently it suggests adenomyosis.

I have no fecking idea what it is and Dr google tells me I need a hysterectomy to rectify it

Will post on mc forum too but would be grateful for any advice from anyone who has experience of this.

bumping for you. Hope you get some answers. xxx

There are several support groups for Adenomyosis on yahoo. The largest one has 724 members. I joined a yahoo support group for Ashermans sufferers and have got tons of information from them.

worth a shot?

Try this link: groups.yahoo.com/search?query=Adenomyosis

Ahhhh, thanks MA will have a look now x

I have endometriosis and adenomyosis is the same disease but in the neck of the womb. I can't believe that in his day and age whoever diagnosed you hasn't given you the support and info you need. Please call the endometriosis UK helpline and they'll point you in the right direction. I was offered a hysterectomy at 23 and was told I'd never have children as was my friend (who has adenemyosis) and we're both now in our 30's with a young son each so please don't listen to the doom and gloom scenarios on the net. There's lots you can do to help yourself but first and foremost you need to find a specialist gynaegologist in this field who can help you have your baby and not just be at the mercy of someone who may have read 3 or 4 chapters in a book whilst training (ie the majority of surgeons in obs and gynae) Please feel free to message me.

Thanks so much gilly. I'm under the care of consultants at the recurrent miscarriage clinic at St Mary's Hospital in London. In fairness to them (although I wish they hadn't) they cc'd me in on a letter sent to the consultant that had referred me which had a line in it stating that the images on the internal scan suggestions of adenomyosis. Will message you anyway

Hi, sorry to post so many months after your initial questions. But I have just found myself in a similar position and was wandering if you managed to find much info out regarding the Andenomyosis and how it might affect pregnancy outcome? I too was at St Mary's Paddington, just yesterday for my first consult. After suffering my 5th Miscarriage. At the time I felt my scan there was very rushed (only took about 2 minutes) and then I realised after discussing some of my symptoms and issues (possible endometriosis) and when the scan report stated 'suggestive of mild adenomyosis' I feel they had a strong indication beforehand and therefore decided to look soley for that issue. (which explains the quick scanning) Anyway I didn't get to talk with anyone following my scan and now have to wait for more information and blood work results in November. It'll be a long wait and I am kean to get my self prepared for any possible bad news to follow, this emotional roller coaster doesn't get any easier to ride unfortunately. I found myself so frustrated and upset when I left the hospital as I realised here I am again, playing this god awful waiting game with no more indication or answers to 10 years ago when I started the ball rolling. I thank you for any advice/ direction etc etc. Also I hope you yourself are that little bit closer to having your answers too!!