Adenomyosis diagnosis - anyone else been here and can offer advice?

[theyawnicorn]

I’m in my 40’s. Following various symptoms I was referred for a scan where I have now been told I have adenomyosis.

My GP has referred me to a gynaecologist to discuss further, looking along the lines of a hysterectomy. I’m told I have a long wait so in the meantime I have been put on the pill (Desamono) to see if this eases symptoms.

Although my upper leg pain seems to have eased my period is very heavy and continuous. I have severe period pains and a headache I cannot shift. Granted I’ve only just started the pill and I know it takes a while for things to settle down but I feel like I’m stuck between this pain and inconvenience or the constant pain of adenomyosis without the pill!

I guess I’m just after any advice from anyone who has been where I am right now. Are there better pills? Is the coil a better choice? If I could have everything taken out tomorrow I would, so fed up with it all right now! It’s taking the fun out of day to day life for me which in turn affects my family which I absolutely do not want!

Hysterectomy is the only thing that sorted me out. It became debilitating; I was anemic, weak and it affected my mental health. I tried everything coil and meds. Sorry may not what you want to hear but get on the waiting list and don’t be frightened to pester. I wasn’t pushy enough and ended up in A &E. A very young male doctor kept me in over night and said I will make sure you don’t sleep through the net. Within weeks I had an appointment for a hysterectomy. It was a very low part of my life as my symptoms had started a couple of years earlier.

I was lucky that the coil worked for me, I’m allergic to the pill so it was either the coil or hysterectomy, I had suffered for several years with heavy periods and them lasting for weeks, the thigh pain and being severely anemic to the point of my hair falling out I figured it was worth trying. The difference it has made has surprised me!

Thanks for the reply. I hate to push “mental health” but it really is making me miserable!
I know the doctor is only covering all basis as no doubt any gynae consultant will ask if I’ve tried other methods before surgery but I really don’t know how much longer I can “try” this pill!!

@pugmum123thank you, coil may be next!

A Mirena coil worked for me. Hysterectomy would have been the next step if it hadn't.

Same here. I was diagnosed 4 years ago after many years of horrendous periods. I couldn’t even leave the house on days 2 or 3 of my period. I became so anaemic that I developed alopecia and when my GP eventually did a blood test she said she couldn’t understand how I’d been getting up and going to work.

Gynae said Mirena or hysterectomy. I didn’t want a Mirena as had heard so many horror stories about them. But I didn’t want a hysterectomy either so I tried the Mirena. Life changing. My periods stopped entirely within 4 months and I’ve never had one since. Strong iron tablets for 3 months fixed the anaemia, my hair grew back and I was a new woman!

You’re welcome! I was given a diagnosis but was then offered no further treatment, I came on mumsnet searching for info like you - I was surprised by how many women suffer with no help from their doctors. I read a lot of posts suggesting the coil or hysterectomy so thought the least invasive option was worth a try, I’ve gone from bleeding for 6 months continuously to spotting for a day every couple of months, no longer anemic and no pain at all! I had mine fitted in September last year.

I went straight to hysterectomy but I also had two tumours in my womb. Best thing I did, I was 37 and have never missed that organ once! Ultimately be guided by your doctor by push for what you want

I was very reluctant to go on any form of contraception again. As pp said horror stories of all, didn’t want the side effects again etc etc (been through all that in my 20’s!).

GP and practice nurse (who initially referred me to have the scan) have been really good to be fair to them, I know they have to show they’ve tried “everything” before major surgery. I will make contact next week to see if I can discuss the coil being fitted instead.

@socks1107i would not miss it either! It’s done its job - now it’s just an annoyance! Glad it all worked out for you and hopefully you are on the road to recovery

I had adeno and endometriosis and had a partial hysterectomy in my mid-40s. I recovered really well.

Consultants insisted on first trying the Mirena coil and things like tranexamic acid but nothing worked.

The hysterectomy gave me my life back!