Adenomyosis - your experiences

[longshot]

I was diagnosed with adenomyosis in January by MRI. For years I’ve had very heavy periods and a lot of pain and in the last 2 years I’ve had bleeding between periods and more pain throughout my cycle. It’s life limiting and painful but not been the end of the world. I take tranexamic acid for the bleeding which works but doesn’t help the pain and mid cycle pain and bleeding.

In March I got covid and it messed my cycle up big time. Periods themselves got heavier but symptoms between periods seemed a bit better (less pain). That lingered for months but now I’m back to where I was, possibly worse.

I would like to know if anyone has had any success with hormonal contraception or in fact any treatment at all? I’m 37 so would imagine I could have at least 10 years to go of this. I eat a low inflammation and low histamine diet already.

At the moment I would say I am in pain of some sort at least 10-15 days a month and I am bleeding in some way for 8-9 of those minimum. Cycles are regular, 28 days.

I have two children and don’t plan on having more.

I don’t have personal experience but wanted to say it’s so great you’re highlighting this. My mum has Adenomyosis and it’s so unknown, when you Google all you find is endometriosis. My mum didn’t find out she had it until her 50s when she was investigated for continued bleeding after menopause, but apparently it had been on her notes before and just noone bad mentioned it. She suffered terribly with her periods her whole life and didn’t go through menopause until her mid fifties, it was just chalked up as ‘well some women have heavier periods’.

I really hope you find good treatment options that improve your quality of life.

Thanks @BuffaloCauliflower my mum was 46 when her menopause started and over by 48 so I’m hopeful that may be my timeline.

There doesn’t seem to be all that much on offer medically other than the IUD (mirena) which I’m willing to try but all the reports I’ve read have said it hasn’t helped / has a lot of side effects. But I’m hoping some people here may have experiences to offer.

Hi, i got diagnosed with that 3 years ago after many years of pain, miscarriages and laparoscope for endometriosis. I have used the mini pill successfully,(too old for combined pill at 46). Hardly bleed at all, minimal pain. I do get lots of migraines though. I tried coming over the mini pill 2 years ago and all the pain and bleeding came back.

I was diagnosed with this 5 years ago, along with fibroids and an ovarian cyst. Symptoms were so severe that eventually a full hysterectomy was my only option. This has changed my life, but I would always advise that it isn't something that should be taken lightly. If you are considering this route, please do plenty of research before making a decision. Wishing you all the best :)

I was recently diagnosed with endometriosis and adenomyosis with a cyst on my left ovary by TVT. Because I have had previous treatments on my cervix there is too much scaring to attempt a coil and have been told that with the amount of damage the only real option for me is a hysterectomy with cervix and tube removal. They will try to save my ovaries if they can. We had already agreed we didn't want more kids, but it came as a bit of an emotional shock none-the-less. My issues have been caused by the c section i had 14 months ago so has progressed pretty rapidly. In the meantime I am on desogestrel to try and relieve the pain which helps a bit but I've found as time goes on I have more days in pain than not.