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.

God, this enrages me. Of course you are "allowed" medical care when you need it. Sorry you're having to deal with this crap on top of the already horrible condition OP. Agree with all the above about insisting on speaking to someone else if that doctor won't help you in total breach of guidelines.

I had a hysterectomy age 40 for adenomyosis but I did it privately due to waiting lists. I think the cost is around 7k if that is at all manageable for you. Maybe part of the reluctance of your doctor is just the NHS saving money - would probably take years to get an appointment anyway (even more reason get on the list now though!)

Oh and there’s no reason to remove the ovaries with adenomyosis so the HRT is crap too.

I had robotic laparoscopic surgery and they removed he uterus, fallopian tubes and cervix. 4 years on and at 45 I still haven’t hit the menopause (although definitely heading into peri!)

and due to the type or surgery and being the first on the list I was in and out same day, driving after 6 days and back at work after 3 weeks.

Oh really? Thats so good you've been approved. Can I ask what area of the UK you are?
My MRI said its focal adenomyosis my uterus is bulky. Its affecting me the whole month and has gotten progressively worse since I had my 2nd child 4yrs ago.
Will you go on HRT or are they keeping your ovaries?

My MIL is still taking HRT snd she is 82 so that simply isn’t true!

I have endometriosis not adenomyosis and have had a mirena coil for 11 years (on my 2nd one) - it has been brilliant, made such a difference. Rarely get any breakthrough, no pain. I know some women do not get on with it at all but for me it’s been excellent.

London
I have diffuse adenomyosis
if it is affecting your quality of life then you should be really considered for a hysterectomy.
I went into my appointment armed with photos of my bleeding and clots and evidence of me not being about to do simple things like school runs or dinner I was ready for a fight but they just agreed well actually they suggested it to me.

the plan is to keep my ovaries but they have suggested endometriosis due to symptoms and my scan also and I was told whether they keep them comes down to if I have endo and if I do can free them enough to keep them.

I suffer really badly with flooding and clots but in all honestly the pain is the worst thing I’m on painkillers and still have to attend a&e some months

I'm honestly so beyond fed up. I keep being told no for hysterectomy due to my age. I'm like so I just have to continue to have my life ruined for another 15-20yrs and as well adenomyosis just get better once I hit menopause

I did manage one private consultation which was £250 and told its endo or adenomyosis and coil was my only option.
Im done having kids and husband has had a vasectomy so why can't I have a hysterectomy

I thought this as well. Consultant said theyd take my ovaries but there's no reason to as I don't have endometriosis. I will definitely be pushing for more specialist care

This is shocking, I would have pushed for hysterectomy, I just had mine a week and a half ago aged 35 so its nonsense him saying the NHS dont offer it at your age. Push for a second opinion!

i had about a week of spotting and then no bleeding again

I need to take photos and try again. My husband came to my last apt and explained how poorly I am.
I literally flood maternity pads, clots the size of £2 coins or bigger sometimes.

I was told for 2yrs I had fibroids but turns out on MRI its adenomyosis.

How was the cramping and bleeding? Did it settle quickly? So glad to hear its worked well.

OP you need to put an official complaint against the consultant who told you that 'you are not allowed a hysterectomy because of your age' and demand to be seen by someone else.

It just infuriates me how some doctors still think that a woman should have no control of her body...

I had adenomysosis and endometriosis and it took decades of being fobbed off by GPs and consultants and being told that 'periods are meant to be painful' before I finally got a diagnosis (I paid for a private MRI).

At 45 the flooding, exhaustion and pain made my life unbearable and I had zero quality of life. I was made to try Mirena coil first (my body expelled it after a few days while I was in A&E for the horrific pain...), the pill and additional drugs such as Norethisterone to try to control the constant pain and bleeding but nothing worked.

To get a hysterectomy I had to make a complaint to the hospital and ask for another consultant who immediately agreed to do a partial hysterectomy and finally gave me my life back age 45.

Keeping my ovaries meant I did not need HRT until natural menopause took over at about 50/51.

I am now 55 and I have had no complications or pain ever since.

I am very similar to you, started on the POP pill and had continuous bleeding but was prescribed 2 POP a day and it’s been a bliss since. No pain and no bleeding.

Hi op, I have a endometrial ablation June the 29th for adenmyosis. I’ve not had a period since. My consultant explained the chances of it working and stopping my periods are 50/50 and the same with pain side. I was willing to take anything when this was offered as I can’t take hormonal contraception and the coil kept coming out

I will definitely look into complaining. I've been under this hospital for years and still getting absolutely nowhere with any of it. I had to literally demand over and over an MRI and they finally agreed to it.

Im so sorry you had such a rough time as well. Its disgusting how badly we get treated.

I didn't realise you could take 2 POP. Can I ask which one you are on?

This it what ive asked for and also been told no as it will make my pain worse and the lining is too thick.
Are you near menopause at all? I was told I could have it maybe mid to late 40s if I wanted to but not earlier.

Have you looked into uterine arterial embolisation? I had it done for fibroids but was diagnosed with adnenmyosis during the investigations. It completely cured both and stopped my periods for good. I had it done privately though - I think it is available on the NHS but unsure of criteria?

Ah just noticed your age - I was late 40s.

I had an ablation a few years ago (early 40’s) and it’s been life changing. I have no periods now and no spotting.
It’s awful to hear how so many people continue to suffer…thinking of you all

I've been researching this as I have adenomyosis and suspected endometriosis too. Apparently ablation is not recommended and often makes it worse.

I did see this when doing my own research and am going to look into it. Can I ask how old you were when you had it? Was it painful to get done? Because I'm 32 everything I ask for apart from pills or coil is being denied. I am going to ask for referral to larger specialist hospital as im well and truly p**sed off with the care ive had

If I was 12yrs older I could get this i think.