Adenomyosis now 20 weeks size!!

[Astrojelly]

Hi there, just coming to this forum really to get some advice and find others in similar situation out there. I was diagnosed with Adenomyosis a few years back after heavy bleeding, irregular periods and my hormones being all over the place sometimes very low making me feel like total crap mentally.

I have 5 children, including my twins from my last pregnancy in 2013 with a c-section. I also was diagnosed in 2009 with Breast cancer (age 29) and did the whole lot...double mastectomy, chemo, radiotherapy, hormone therapy, breast reconstruction etc. Have been fairly ok since then.

Anyway, over the last 18 months I had really started to feel and notice my uterus, feeling more solid and larger. Fast forward to Jan of this year and I finally went to my new GP as moved end of 2018. He didn't even examine me just said he would refer me. A few months passed and still no sign from hospital so chased GP and turns out he didn't do the referral.

Yesterday I finally had my appt with gynae consultant and she was actually quite shocked I think when she examined me. My uterus is very bulky, all the way up to my belly button and around 20 weeks pregnant size (I'm not pregnant btw...trust me in did so many pregnancy tests to be sure). Talked to her about all the symptoms I had been getting, the usual adeno ones I guess and I am now looking at total hysterectomy.

It was a moment of being freaked out about what was to come but also wanted to cry because this thing has completely taken over my life. I cannot wear most clothes, feel so self conscious about how I look, constantly trying to hold my tummy in which as you can imagine is a nightmare with such a bulky uterus and it has affected me wanting to go out and socialise for months.

I have to have MRI and other tests as my history of breast cancer raises concerns but it also rules out most other norm treatments as I cannot have anything that will increase my hormones. I am due to have breast reconstruction to have my implants removed and tummy fat used to make new boobs, this was planned for next couple of months but that can wait now until this huge beast is taken out of me!

Anyway that was my long story (sorry). Would love to chat to others that have adenomyosis too. I suspect mine will also be endo too due to the size but I am certainly hoping whatever it is...its benign.

Thanks for reading

P x

[dixxx]

I know how u feel I am on the menopause injection and I still have pain which is concerning me x

[AllthatGlitters]

I have adenomyosis too & my stomach swells up regardless of what I do. It looks awful and can remain like that for weeks. It’s not an easy condition to live with & I get lots of heavy bleeding and labour pains ;( hope your tests come back ok x