Anyone with adenomyosis? Considering hysterectomy.

[Iris65]

Told that my uterus is the same size as the average 18 week pregancy and heavily infiltrated, including the cervix. I have had pain, bloating and heavy bleeding for years. Tried all the medication and the mirena coil. Just had another horrible four weeks of pain and bleeding and I currently look about 6 months pregnant. Given my mum's age of menopause I reckon I have several years to wait before any relief! Now that I am not working I have decided to go for the hysterectomy that was offered four years ago and I just cannot wait to have this heavy, painful, bloated feeling gone - once I've recovered from the surgery.
I think I am going to ask for a vaginal hysterectomy and also an epidural as I have serious health problems that make a general anaesthetic dangerous.
Anyone else going through this? Any advice?

Hi Iris,

Im sorry to read about your problems.

I haven't had an official diagnosis but to
Cut a long story short, I
Have had 2 laparoscopies expecting to find endometriosis, none found but I'm experiencing awful pain despite no periods (coil fitted) and horrible bloating and tenderness.

At my most recent consultation (3rd doc)
He mentioned adenomyosis and having read about it it seems textbook. I hadn't
Even heard of it before that.

I had the coil fitted to control my heavy bleeding which left me needing a blood transfusion last year after I was found to be severely anaemic. I've also had a c section which it seems can predispose people to it.

I've been prescribed some drugs to induce the menopause and if my symptoms go then the consultant has said the only reliable course of action is a hysterectomy. I'm scared of all that entails (mainly menopause , I'm 35) but I'm also desperate to have some relief from the debilitating pain.

It seems as if you've been dealing with this for a while. I hope that you can get some relief soon - do you have any idea of how long you might have to wait for surgery?

Not sure, but I remember when it was offered last time they said 8 weeks between opting for it and the surgery.
You are so young to be facing this! My major problems didn't start until I was in my 40s

A word of warning (sorry!)...
They might not be able to do a vaginal hysterectomy if your uterus is large, because a vaginal hysterectomy involves cutting the uterus into pieces small enough to be extracted vaginally - obviously there is some blood loss, and a large uterus can make that too dangerous.
Sorry for the gory details.
I'm happy to stand corrected if that information is out of date, but it was correct 5 years ago when I had my hysterectomy.
On a very positive note, I don't regret mine for a second - I had prolapses and was thrilled once I'd recovered that I didn't have to deal with constant pain any more.

I second what Mine says OP. I have six fibroids and something 'unknown' growing in my uterus. I am having a 'normal' hysterectomy next month, my surgeon discounted a vaginal because of the bulk.

Yes I had an abdominal hysterectomy because of adenomyosis and large fibroids. Best thing I ever did and the only thing that rectified my horrendous symptoms. Good luck.

I was diagnosed with it 2 years ago and they refused me a hysterectomy unless I agreed to try Mirena first. I've heard such overwhelming bad press about it I have gone away with no treatment! I'm on HRT which obviously feeds it but guess I just have to cope.

Do you get a sharp pain on left side at all? As well as the usual period cramps I often get a really bad pain on the left, sort of above hipbone but really in deep, ifykwim!

Look on the Hysterectomy Association site for more information and forums.

Also a number of us have been talking on 2 hysterectomy boards on here where there are a wealth of women who have all had hysterectomies for various reasons.

My hysterectomy was done via key hole because of a very enlarged uterus full of fibroids. Recovered extremely well by 5/6 weeks and am now 10weeks post op and totally back to normal.

Best thing I ever did. Years of heavy, prolonged bleeding Mirena and ablation all tried.

Good luck

Do it! I had mine at 42 and have never looked back - no more peri0ods, no more pain, no more soaked beds - hooray!

I had abdominal hysterectomy - not a problem for me - invisible scar - lost in the forest! Trouble free recovery. It was the best thing I ever did!

Had a scan last year and the gynae said it was adenomyosis, but I recently found a letter from a previous scan that suggested "adenomyotic tissue" from several years ago which would explain a lot!

Taking a rare day off from work due to this awful bleeding. Can't consider a hysterectomy at this stage though my mother had one in her early 50s due to very heavy periods too.

I'm going to try to see the GP either for the contraceptive pill or Mirena. Kinda scared of the Mirena though because for my sister it made the bleeding even worse Good luck, I hope you find a solution for this soon

ahh maybe adenomysis is what I've got? I've been suffering for months with really sharp pain in my pelvis area - particularly on the left. I'm having a laparascopy on Friday. I'm only 32 and I've not yet had kids so a hysterectomy is not something I'm up for just yet. does anyone know if there are other ways of managing it? i'm just desperate to not be in pain.

I've got suspected adenomyosis, I've not had heavy periods just lots of pain. Bumblenova, I've had the sharp pains like you describe too. I had a laparoscopy about 20 years ago (I'm 42) which they did because they thought I had endometriosis but they found nothing. Been on the Mirena too but it really messed around with my MH.

They've gave me Zoladex injections, it mimics the symptoms of the menopause and they've said if it takes away the pain etc then they'll consider me for a hysterectomy. Been on it for 3 months now, 4th injection next week. First period I had after the first one was horrific but I've had no periods at all since, the relief has been amazing! No tension and fear leading up to the pain starting, just feeling like I can get on with life! I've been lucky to only have the occasional mild hot flashes too, nothing too bad at all.

Hi I was just looking for some advice I have just been diagnosed with adenomyosis I'm 29 i have 2 dd I have always sufferd with pains bloating heavy bleeding I get shooting pains up the vagina that feel like I've just sat on a spike I'm constantly sick and getting pid often and I have also had an ectopic with 1 fallopian tube removed I'm thinking of just asking for the hysterectomy I've been told it's at my discretion but I dont think could go on like this after reading everything I can I'm convinced its wat caused my ectopic the pid anxiety and depression aswell as iron and b12 deficiency from what I'm reading I think I developed it before i was born but due to multiple problems and child birth I've had dozens of scans but it was never pickd up until last week I think hysterectomy might be my best choice has eny body else had 1 so young and do they regret it