Adenomyosis

[Tinkeebell]

Hi there,
Anyone living with Adenomyosis, how were you diagnosed? what are your symptoms? What treatment options have you had or are considering having?
Thank you

@mumsie8

I'm 3 weeks in post hysterectomy. I had my womb, cervix, tubes and one ovary removed. I feel fantastic. No more life ruled by wondering if i'm going to bleed everywhere, no more excruciating back pain. While it was somewhat bittersweet, losing my womb, it had served it's purpose wonderfully and i had no intention of having more children. So to me the decision to have it removed was a no brainer. But i had to push to be diagnosed and then we saved and my parents helped out and i went privately. No way was i waiting for my menopause to kick in to 'cure' it. Biggest thing for me now is getting over my quite bad anemia and building my ferritin levels back up. It sometimes felt that because my bleeding was hidden away then it was something, as a woman, i had to put up with it. If i poured with blood and clots the way i did every month from my mouth would i have been treated better/sooner/more equably? It's shocking the way women's health issues are viewed, belittled, undermined, undervalued.

Wow that's great after only 3 weeks to feel like you do. True about the bleeding I told the doctor how much I lose and he didn't even bat an eye at it, the thought had crossed my mind a few times to fill bottles with coloured water and say here you go you deal with it. So shocking in this day and age that women are left years without diagnosis, you really have to fight for it. Hopefully your iron levels will come back to normal levels now that your free from the misery

I had it and think it was caused by an womb ablation. My womb lining started to grow back after about a year and it felt like I had a breezeblock inside me. I got bigger and bigger until I look extremely pregnant.
I had originally been diagnosed with a bladder prolapse but knew it wasn't that. I'd already had a prolapse and this felt different.
I went private and got diagnosed straight away.
I was in my 40's and had a total hysterectomy and it was the best thing I'd ever done.

@Cocolapew

I had it and think it was caused by an womb ablation. My womb lining started to grow back after about a year and it felt like I had a breezeblock inside me. I got bigger and bigger until I look extremely pregnant. I had originally been diagnosed with a bladder prolapse but knew it wasn't that. I'd already had a prolapse and this felt different. I went private and got diagnosed straight away. I was in my 40's and had a total hysterectomy and it was the best thing I'd ever done.

It's awful the feeling of something so heavy inside and the looking pregnant, all of the pressure it puts on our insides that doctor's seem to shrug off, mine told me I might have an overactive bladder, no kidding because my enlarged uterus is pressing on it. All of the positive outcomes are great to hear, I only wish I'd had a hysterectomy instead of the ablation and mirena I'm concerned that it's going to do more harm than good

@itsgettingwierd

I have a pre diagnosis and hystereoscopy in October to confirm.

My symptoms were extremely heavy bleeding for weeks on end. Extreme pain, bloated ness etc.

Mini pill it got worse and 2 mirena coils I just bled continuously getting heavier and heavier until they came out.

I'm on northisterone now twice a day.

I still get awful pains and some spotting.

I'm hoping for a hysterectomy 🤞

Let us know how you get on after your appointment if you don't mind. Wishing you all the best

@Tinkeebell

Who told you to live with it? Did you have a hysterectomy?

I was telling myself

We all do that, but we shouldn't.
Interesting talk on This Morning about Endometriosis, but no mention of Adenomyosis. The doctor basically said if it was men there would be more done about it.

@itsgettingwierd

I have a pre diagnosis and hystereoscopy in October to confirm.

My symptoms were extremely heavy bleeding for weeks on end. Extreme pain, bloated ness etc.

Mini pill it got worse and 2 mirena coils I just bled continuously getting heavier and heavier until they came out.

I'm on northisterone now twice a day.

I still get awful pains and some spotting.

I'm hoping for a hysterectomy 🤞

I was wondering how you got on with your appointment? I had a follow up and the consultant told me that Adenomyosis doesn't cause other symptoms it only causes painful heavy periods