Adonomyosis and finally a gynea referral

[Ewock]

After years of being fobbed off with "you have IBS", and by years I mean since I was 17, Ihave finally been taken seriously. To achieve that I had a mini breakdown at my Drs, it wasn't my usual female Dr but a male locum and he was so good. He finally said the words you shouldn't have to live with this pain. I was crying in relief that someone understood and wanted to help.

I know it sounds dramatic but every month I have pain that feels like contractions, some moths vomiting due to the pain. I'm on two different medications for the amount of blood I lose. I have huge clots coming out. I miss at least 2 days due to the pain and flooding. And that doesn't include the pain during ovulation etc.

He sent me for a transvaginal and they diagnosed adonomyosis and also said it had got worse! I asked what she meant, she said my precious scan nearly 10 years ago showed signs of it! I was never told.

So now the Dr has referred me and I've had a letter back I should receive an appointment date by the end of next month.

Sorry it's all a bit muddled but I feel a weight lifted that I'm not making a fuss over nothing, that there is a reason for all of it.

Has anyone else gone through this or have advice?

Hello, you're not being dramatic at all! I have adenomyosis and also feel like I'm in labour. I only found out about the adenomyosis a couple of months ago, after a specialist MRI. Not a big standard one. I also have stage 4 deep and infiltrating Endo.

When she said I had it, something in me already knew really due to symptoms similar to yours.

Also little things that had been mentioned/asked over the years that's suddenly made sense. Such as when we were having a round of IVF, the lady asked if I'd had a period yet and if so was it not very heavy. But they never mentioned it again and they continued with my transfer. Turns out my womb was thicker than it should have been for that part of my cycle (it's my adenomyosis, but they never picked it up). My periods are all over the place etc, I also suspect PCOS but nobody will look further into it and I think they just assume I have it.

Womens care can be really shit in this country, and that's before you add the Covid backlog!

Thank you so much for your message. I'm so sorry you've gone and are going through all that. They just don't seem to do anything even when they pick up on it. It's taken me a long time to get to this point but reading some people's stories I've found, they've waited even longer.

I know, it's shocking. It was 17 years between me first going to a doctor, to actual diagnosis. And I'm no better off 3 years after that. I hope they start to do better....

Yes I've been diagnosed with it - 30 years of pain that I thought was 'normal'. I had a d&c, hysteroscopy, ablation and biopsies done. All under GA. I will need a hysterectomy but biopsies were all clear. It was almost a relief to have a name for it because I thought I was losing my mind.

I'm so pleased you're getting help at last. I'm waiting now for my appointment to come through. But as you say it's such a relief to know that there is something and it's not just in our minds. Women's health is shocking really

Yes I also have adenomyosis- as well as stage 4 endometriosis and pcos (other things too)
often they go hand in hand. I had excision surgery for my endometriosis as was offered a hysterectomy for the adenomyosis but have decided against for now.