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Original poster

Talk to me about Adenomyosis

14 replies

Redandpinkstripes · 21/08/2023 13:42

Hi there. I'm 48 and I've been having pelvic pain for a long time but it has gotten progressively worse. I have a 5cm fibroid but they wanted to rule out Endometriosis.
I had a laparoscopy last week and I have an enlarged uterus, which they think is due to Adenomyosis. I have been in so much pain gp has prescribed morphine and I was signed off of work for over a month.
There is so little out there on this condition. Even the Nice guidelines don't have it on there.
I would love to hear other people's experiences. I am thinking a hysterectomy is probably my only choice to cure it.

OP posts:
Fraaahnces · 21/08/2023 13:47

It’s the ugly cousin of Endometriosis. Instead of endometrial tissues wandering off and causing issues outside of the uterus, the cells move into the uterine wall, thickening it. This means that the regular contractions (cramps) are less physically effective and worse pain-wise. I had it before there was a name for it and my DD2 has it. She had a Mirena coil put in under GA when she was 14 to stop her periods and it’s been life-changing for her. (Poor girl was literally passing out.)

hlc123 · 21/08/2023 14:27

It is a horrible, painful condition. I was diagnosed at 32 although had suffered heavy bleeding/ flooding and pain for many years. Tried the pill and medical menopause which made me feel ill, had endometrial ablation at 34 which stopped the bleeding but made the pain worse then had a hysterectomy at 36 which has made my life so much better. I was lucky that my family was complete by the time I had the hysterectomy and I have never regretted it.

Original poster
Redandpinkstripes · 21/08/2023 18:03

Fraaahnces - I'm sorry to hear your daughter has it too. I've never known pain like it. I already have a mirena but it isn't doing a lot so they are talking about me having 2!!
Hic123 - I'm sorry to hear what a horrible journey you have been on. It's so positive to hear that the hysterectomy helped so much 🙏

OP posts:
Fraaahnces · 22/08/2023 03:50

One of my closest friends had two implants in her 50’s as she wasn’t coping from the pain and constant clotting. She said it’s done the trick. (Also Adenomyosis)

Monkeytennis97 · 22/08/2023 05:18

I've got it. Had it for 10 plus years along with cysts and fibroids. Mirena coil helps massively.Good luck!

Haggisfish3 · 22/08/2023 05:30

I also have it. Anecdotally there seems to be a possible link between it and c sections. I never had any issues until after my c sections. I had polyp and had that removed and mirena put in. Periods almost non existent now.

LovelyQuiche · 22/08/2023 05:45

I’m a Sonographer and I see it regularly in women over 40 as an incidental finding. Most of the time it’s mild so doesn’t appear to cause too much bother. Obviously severe cases can cause much suffering.

pilates · 22/08/2023 07:07

I was told a hysterectomy is the only procedure which will stop the awful symptoms.

Greenwitchhorse · 22/08/2023 07:33

I had this and had a hysterectomy at 45. Best thing I ever did: it gave me back my life after so much pain and heavy bleeding and I have had no issues after it (kept cervix & ovaries)

The doctors first wanted to try the Mirena coil (my body rejected it), meds/pill to try to reduce the monthly bleeding (it only worked for a while) and endometrial ablations are useless for Adeno (as the bleeding comes from all over the uterus).

I hope you find the right solution for your issues.

I really had to advocate hard for myself, complain and ask for a different consultant to finally be given that hysterectomy...

Plonkydonkey · 22/08/2023 07:52

I live with it. Occasionally I get a flare and end up in hospital on morphine. The thing I found best for me was recognising when a flare was starting to rumble and taking naproxen. It doesn't always work. But it does take the edge off.

I found that morphine didn't really work for me. Even when admitted it doesn't seem to touch the pain.

Maybe we need an adenomyosis club here.

Toomanysquishmallows · 22/08/2023 13:39

im 50 and I was diagnosed with ademyonosis in June , my main issue has been bleeding and horrendous spotting . I also have horrendous bloating.

Original poster
Redandpinkstripes · 22/08/2023 16:58

Thank you for your replies. I am sorry so many of you are suffering. There is so little out there on it, even though it affects 1 in 10.
I have bowel and bladder issues. The pains down my legs are horrific.
A support thread sounds like a wonderful idea. Xx

OP posts:
Original poster
Redandpinkstripes · 24/08/2023 09:47

.

OP posts:
OmariOlu · 22/11/2024 10:40

LovelyQuiche · 22/08/2023 05:45

I’m a Sonographer and I see it regularly in women over 40 as an incidental finding. Most of the time it’s mild so doesn’t appear to cause too much bother. Obviously severe cases can cause much suffering.

Hi lovelyquiche, this just happened to me. I went for an ultrasound and he said this is what he can see. I had a baby a year ago. I know nothing else as I have to wait for his report but now I’m going crazy. Im
scared I won’t be able to have any more children as googling has sent my mind crazy. I have heavier periods and bleeding since having him but nothing like some of you ladies describing … I’m guessing it gets progressively worse? Or is this not always the case? Please help me :(

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