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.

This is what the consultant told me.

Desogestrel 75mcg
my GP didn’t seem to know anything about it but I was referred to a gynaecologist at the hospital who told me it was an option as I didn’t want the coil.

I would go private and have an initial consultation with a gynae at a Nuffield or Spire hospital re a hysterectomy. You may well need a referral letter from your GP but in any case you should not have to go on struggling as you are.

Do not worry yourself unduly about you having a retroverted uterus; that is a normal anatomical variation where the uterus tips backwards towards the spine instead of forward towards the bladder.

You need a decent consultant!

I had my hysterectomy a few weeks after my mums funeral - she died of peritoneal cancer which can come from ovaries. (Original surgery postponed as due week before the funeral!)

I spoke to the consultant before my surgery as we panned to preserve my ovaries and agreed they’d be removed if they looked dodgy.

i kept them.

There is absolutely no reason to plan to take them.

So sorry to hear about your mum. I hope youre doing ok.
Can I ask how old you were when you had your hysterectomy?

I saw a private gynaecologist constant under the Ramsay Health Care but had to save to go for one consultation and still told Mirena is my only option. I will look into Nuffield and Spire.

With my retroverted uterus im more worried about pain or the coil not sitting correctly and causing complications

Oh ok. I will have a look. I was on cerelle and just kept bleeding and had weight gain as well ad awful mood swings.

I was 41.

I was 39 when I was diagnosed with adenomyosis, tried everything under the sun except the coil (for the same reasons you said) and finally had a hysterectomy last year at 46. I hadn’t asked for one until then, to be fair, but once I’d made up my mind that’s what I wanted I was very persistent.

When they did my surgery my uterus was noted to be the size it would be at 14 weeks of pregnancy, and it was riddled with endometrial cells. I kept my ovaries and have not needed any HRT. It also resolved the chronic and severe back pain I’d had for years which I didn’t think was related but clearly was. They also found endometriosis lesions behind my uterus and removed those. I feel like a new woman and have got my life back.

Dont let them fob you off. You have a right to qualify of life over their misogynistic ideas about your reproductive capabilities. Go in with the clinical guidelines printed and highlighted and take someone with you if possible to help advocate for you.

I have Adenomyosis, and a retroverted womb, and had the exact same concerns as you with regards to the Mirena coil, all I could find were horror stories, but honestly it has been life changing since having it in. My skin has improved and I’ve actually lost weight. I have zero side effects and no longer suffer the pain or bleeding, I rarely have a period now to be honest. I also used to struggle with the side effects of the pill so was worried about the hormones in the Mirena but it has changed my life for the better and I wish I’d had it sooner.

I had constant bleeding and cramps that needed pain relief for a few weeks and then it gradually tapered of. I hated it for the first few weeks, but after that it went from bearable to complete game changer. It did take a while and I occasionally still have a day or two with cramps, but I can manage with no or a couple of over the counter painkillers which beats the cocktail of codeine, naproxen and paracetamol I used to take almost 50% of the time.

No doubt for some, a hysterectomy is the right choice, but that is also not risk free, so for me, giving the mirena a go was worth it. I'll need it replaced soon, keeping fingers crossed that it'll keep doing it's job!

Sorry OP, just got in from work. I was 48 when I had it done - had an emblation years before but it made no difference. The procedure is done under sedation and is painless but the few hours afterwards as the emolisation kicked in were very painful (lots of morphine) but recovery was very straightforward and I had one last bleed then nothing. Mid 50s now and having no periods without the huge surgery of a hysterectomy has been nothing short of life changing. Good luck 🥰

Although many years ago now I had a hysterectomy aged 30 even though I only had one child. As I said to my gynaecologist it was stopping me being a good mum to the child I had. The original plan was leave my ovaries however one ending up having to be removed, the other was treated with diathermy but despite that it had to be removed a year later and I started HRT. I would definitely push for a second opinion.