Adenomyosis - please help me

[abbs1]

Ive finally been diagnosed with adenomyosis after being fobbed and not believed for 20 years. I cried when I was given the diagnosis as it was such a relief the pain and fatigue hasn't all just been in my head since being a teenager.

The gynaecologist told me I am not allowed a hysterectomy due to my age (early 30s) even though im done having children. I'm not allowed combined pill due to migraines and BP issues. The POP I just significantly bled on for 12 months so had to stop. Ive been told until I'm late 40s my only option is the coil.

I have told the gynaecologist consultant and teo other gynaecologist Dr's I will not be having it. I have a retroverted womb but also me and synthetic hormones do not work well. Also heard far to many horror stories of the coil.

I feel like I'm completely stuck in this horrendous pain and fatigue cycle affecting me all month not just my period and I cannot carry on like this.

Does anyone know of any other options? I'm looking at finding a different specialist, completely overhauling my diet and lifestyle to see if naturally doing more will help.

If anyone has any advice or tips, I would hugely appreciate it as adenomyosis has been ruling my life far to long and I refuse to let the next 15+ yrs of my life before a hysterectomy is an option to be ruined as well.

Sorry, probably not what you want to hear but my consultant said the only cure was a hysterectomy. By the time I had the hysterectomy I was quite poorly.

I thought the only cure was hysterectomy too. I had one for this reason years ago ( I was 42). Could you get a second opinion? I also refused the coil which they didn’t like but I said it was a hard no.

Would chemical menopause help? Zoladex injections?

My 17 year old daughter has this. Both coil, minipills and zoladex. And nothing works. All the pain medicine tried. She has dropped out of School. wasting her Youth in bed and in pain. Awfull to see and awfull there is no more they Can do.

Why can't you have one? Not all women want kids, and if their preference is to be painfree and not able to bear a child, that is their choice. Surely any surgery in your 30s is statistically far safer-you're likely to be the healthiest you'll ever be?
Women in their 40s/50s can get pregnant, so that's no excuse.
If abortion is legal (and most of us agree it should be) how can it be right to deny younger women an operation? Maybe see another doctor to get your hysterectomy now so you can move on with your life.

I was sceptical about the Mirena for same reasons as you, but eventually I gave it a try. It turned out to be a complete game changer for me. No more labour level pain. It's not perfect, it took about 6 months for it to settle in, with cramps and bleeding gradually tapering off, and I have an annoying level of discharge. However it has been worth it to control the pain. Before having it fitted, I researched where and at what cost I could have it removed privately if I wanted it out quickly, just to have a back up plan in case there would be waiting time for NHS, although TBF my GP promised she'd remove it any time. However this hasn't been necessary. So may be worth considering.

Have you seen a gynaecologist privately? If not, that’s what I’d do. An initial consult is maybe £150/200. I did this for my gynae issues and it was money well spent

Sounds like you have DC? In that case I’d really push it

I’ve been diagnosed with the same , after years of pain and extreme bleeding. Passing out & vomiting etc due to the agony.
I was (eventually ) carolled into having a coil. Don’t listen to the spiel. Before I had it fitted the GP says it’s amazing , nearly every woman stops bleeding. After 6 mths of still bleeding ( and feeling generally worse during the month) I got told it can take a year to settle down. After a year, I got told ‘oh, you’re just unlucky ‘ things didn’t settle, still bled on it, & more spontaneous , not just every 28 days or so.
I’ve had it taken out now. Think I’d rather put up with a monthly cycle of feeling bad for a few days rather than feeling generally shitty all month.

Have you looked into valproic acid for adenomyosis. Changed things for me drastically

I have adenomyosis and stage 4 endo. Never got on with the pill
i had the mirena fitted as part of my excision surgery and it’s been life changing. No pain, no periods, no issues at all. They said if I hated it then have it out but I agreed to give it a go

This is what my consultant said but said until im in menopause the NHS wont do it as im currently 32. He said mirena is my only option left which I think is disgraceful when hes even put in my notes its massively affecting my everyday life.

Im going to ask to be referred to a new specialist for 2nd opinion as I can't carry on like this. I have two young children with significant needs and I haven't got time to be poorly

I haven't been offered this but will look into it thankyou

How quickly did it work? I have a retroverted womb so im scared of the pain fitting it but also I don't do well at all with synthetic hormones and worried I will end up bleeding for months and be in pain.

The Mirena was life-changing for me. It stopped the bleeding straight away and the anaemia resolved soon after.

Im so sorry to hear this. I lost so much time in school and college too due to this. Missed exams, trips everything. Does she have tranexamic acid and mefanamic acid at all to help with pain and bleeding?

It’s not true that the NHS won’t do it until menopause. Request a second opinion or ask to be referred to a different hospital.

You can ask for an interprovider transfer on the basis of breakdown in clinical relationship and not lose your ticking RTT clock if you have one.

The consultant said its due to my age and needing to go onto hrt which I can't be on for 18-20yrs due to the risk of breast cancer etc. I'm going to seek further specialist help and get another opinion.

When in your cycle did you have it fitted? Im utterly terrified to try it in case i can't get it out and end up lots of pain. Ive also heard women gain a lot of weight on it. Have you had no cramping etc as well?

I’d get a second opinion - nowhere does it say that there’s a cut off age. Guidelines say that it’s a treatment where symptoms are severe and patient has no interest in preserving fertility.

https://bestpractice.bmj.com/topics/en-us/3000384

Im going to ask for referral to tertiary hospital for more specialist help.

im 35
I have just been approved for a hysterectomy I was told my case is severe and the only option to help with my pain is either that are chemical menopause which obviously only temporary.
have they given you an indication of how bad yours is ? I was told I have a bulky uterus and my consultant agreed straight away after my ultrasound

He’s also talking bullshit about the HRT too, and why would a hysterectomy put you into early menopause?

https://www.nhs.uk/medicines/hormone-replacement-therapy-hrt/when-to-take-hormone-replacement-therapy-hrt/

I was also told the only cure was hysterectomy.

I had one at 41 for adenomyosis.

The GP did “insist” I tried a coil first but both (yes told I had to try again) came out after 3 weeks due to the excessive bleeding.

I ended up on northisterone after bleeding for 82 days and had the OP 6 months after being put on the list.

You are entitled to a 2nd opinion

I'm glad to hear its worked well for you. Im similar to you with discharge etc. Did you still have full periods while you settled onto it just breakthrough bleeding? Were the cramps really bad or manageable without pain relief?
I did see a private gynaecologist who also said mirena but to fit was like £500 😭