whos got adenomyosis

[LISaprag]

what’s your pain like not on a bleed

[Heartof3]

Hiya 😊 I have adenomyosis. My symptoms are a heavy painful pressure in my womb. Bad back. Achey legs & sharp pains around my right ovary. Swollen tummy , achey legs & tiredness.

It's like I'm constantly aware of my womb.

The more active i am, the worse it gets.. it rules my life! 😖 x

[LISaprag in reply to Heartof3]

that’s how i am pain in womb some days it’s ache but i go walk too much it flares up i’m on mini pill so don’t bleed much are you taking anything for pain and is your pain every day

[Heartof3 in reply to LISaprag]

It's awful isn't it 😞 I also have to be careful how i sit as i cramp up bad.

I'm 2 weeks post laparoscopy so newly diagnosed with it.. I've just been put in the mini pill, Cerelle!?

I take naproxen& codamol when i have a bad flare.

My pains used to be cyclical but now it's every day. Drives me mad!

It's a silent disease so it's so draining trying to act fine in the fear of comming across like a hypochondriac. So crap isn't it 😒 x

[LISaprag in reply to Heartof3]

omg that’s same as me my pain used ease up but now it’s constant and i have to not get upset or stressed cause that flares it up i’m on that pill already 6 months now did they not give you any other options how old are you

[Heartof3 in reply to LISaprag]

I feel your pain. Bloody life ruling isn't it. Feels like my womb is being squeezed just because i walked to the local shop.I had a diagnostic lap & got steralized at the same time. My gynea was adamant i had endo! I wish i knew more about Adenomyosis coz i would of asked for a hysterectomy beforehand.

So now I'm steralized & put in the mini pill. I'm 39!

I tried the pill years ago & it just made me hormonal but now I'm willing to try anything to live a painfree active life.

My new gynea is so dismissive so Im not taken serious with my pain.

Wish i had the money to go private.

Have u been diagnosed with Adenomyosis? Are u getting the help u need? X

[LISaprag in reply to Heartof3]

i’ve gone private my dad helping me out i had a scan through nhs showed tiny fibroid and adenomyosis i’ve got a mri booked on tuesday just to see if it shows endometriosis then go from there ive not had a lapscopy yet i’ve been trying to avoid a operation i know adenomyosis can’t be cured only by hysterectomy which not sure on it’s a big operation just want the pain discomfort to stop the pill isn’t helping with pain just the bleeding part they suggested the coil but i’m not sure on that. how long you been on the pill for

[whatfam in reply to LISaprag]

UAE (uterine artery embolisation) is also an option other than hysterectomy. But when I've done research about it today, it doesn't seem like it's particularly effective in the long term. It seems like it could be a worthwhile intermediary step for people who do want to have children.

nice.org.uk/guidance/ipg473...

[Desperateforrelief in reply to LISaprag]

Hello, to let you know I suffered horribly in the 80's with adenomyosis. They left the ovaries for "hormones". My ovaries went crazy, corpus luteum cysts every month that swelled up to the size of grapefruits and then blew apart. Very painful. I ended up getting a hysterectomy and then 2 oophorectomies. Once they were all out I did much better, I have been on hormone treatment and felt great until transvaginal mesh messed me up in 2009. I was 28 when they did the hysterectomy, 32 first ovary, 34 2nd ovary. Read medical studies. There is so much worry about hormones causing cancer. I've been on it since I was 34, I'm 61. I do a lot of my own research to find help. I am so sorry for all your suffering ladies! I hope you each find the help you need.

[LISaprag in reply to Heartof3]

do you go wee a lot and have discomfort after woods

[Heartof3 in reply to LISaprag]

Yh , when my pressure pain is bad i constantly feel like i need a wee. When my period is due i get uti symptoms x

[whatfam in reply to Heartof3]

Do you have any advice on advocating for yourself to get better painkillers? I had my lap on Monday and they sent me away with paracetamol and ibuprofen. Last night I had really bad cramps, probably because my period is starting soon. I'm quite worried that what they've given me isn't going to be enough :(The only other meds I have are naproxen which were prescribed by my gp.

[Heartof3 in reply to whatfam]

I take naproxen & codamol when i have a bad flare. I just called my doctors & said i needed something stronger & explained how painful it is..x

[Heartof3]

Ahh that's good. I hope your mri goes well, let me know how u get on.

I litrally on picked my pills up earlier so will start them tomorrow. X

[LISaprag]

do you get lower back ache

[Heartof3 in reply to LISaprag]

Yep 😖 all gets involved don't it x

[LISaprag in reply to Heartof3]

how was surgery

[Heartof3 in reply to LISaprag]

Surgery went well. Just the gas psins that wasn't nice. Still have a really sore belly button x

[whatfam]

Once my period is over, I tend to get about 3-7 days of pain around the time when I ovulate. I can have sharp or dull pains that feel like they're coming from my right ovary. My lower back gets really sore and hurts. I can also feel the pain coming slightly down my legs. The area that's above my mons and below my belly button hurt a lot.

[LISaprag in reply to whatfam]

have you been diagnosed with endo or adenomyosis

[whatfam in reply to LISaprag]

Adenomyosis

[RunnerNat]

I have just been diagnosed with adenomyosis and they want to put a mirena coil in. Has anyone else had one. I could have cried when I read your replies as I’ve been suffering in silence. I never stop bleeding hence on iron pills. It’s so life changing

[Confusedjoey in reply to RunnerNat]

Hello, yes I have adenomyosis and have been managing symptoms of it with a Mirena Coil since 2017. My first coil worked wonders, loved it and experienced very little in the way of crippling contraction pains other than a one day or so a month around ovulation, for five years. I have recently had my coil replaced and it was agonizing. I don't think the GP was as experienced as the Consultant I had seen previously and I found it a painful experience. Since having the new coil, I am back to experiencing the contraction pains that make me yelp out loud / cannot talk through that first drove me to seek help back in 2017. I can't handle these pains, and I really hope it is just a settling in period while I adjust to the new coil. But it's reminded me how awful adeno pain is, unbearable. I hope you experience the relief I did with the coil as my periods all but stopped and pain reduced significantly. Even though I am having trouble with my new coil, I would definately recommend this as a viable option.