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Adenomyosis - experiences please

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#1 Mose

Posted 15 October 2019 - 01:41 PM


I recently had a scan to check for ovarian cysts as I have a long history of some pretty big ones.

I was a bit blindsided today to be told I had all the hallmarks of adenomyosis, which is something I have never heard of.

Will make an appointment to see gyno, but in the meantime would appreciate hearing of any experiences, as the conversation took such a different track from the one I was expecting I didn't take it all in.

The GP did send me a link to read later which I have read, but I would really like to hear some personal stories.

Am early forties and family is considered complete if that affects how you might want to answer.

Thank you!

#2 Mrs Claus

Posted 15 October 2019 - 01:51 PM

I have it. Main symptoms (mine) are heavy bleeding/pain/bloating. I had an ablation last year which helped for about 6 mths but all now back to how it was before. The only real ‘cure’ is a hysterectomy

#3 Soontobegran

Posted 15 October 2019 - 02:22 PM

I had it and ignored it but also grew a 5 kg fibroid. I haemorrhaged at home and pretty much bled out and needed emergency surgery and ended up in ICU for 4 days.

If you have finished your family I would strongly recommend a total hysterectomy, it is the only way to cure it. I feel totally stupid that I left myself in such a compromised condition after years of 3 week flooding periods and pain worse than labour pains.

Lots of luck.

#4 Caitlin Happymeal

Posted 15 October 2019 - 06:07 PM

I have it. Didn't get to the stage STBG got to but I had to be picked up from uni pracs a few times due to flooding. In reality, on one occasion, I probably should have presented to the ED I was doing pracs at because it was a decent blood loss and I was pretty freaked out.

I've had a mirena put in which is ok and has significantly reduced the bleeding, but not totally and I have to wear modi body underwear because it's sort of constant. But not horrible. Just spotting.

I'm actually seeing the GP on Saturday because I am having hot sweats at night and am experiencing a bunch of other hormonal stuff. Sort of thinking I might be looking down the barrel of a hysterectomy TBH.

Lucky for me, like you.. family is complete. I'm "only" 36 but I don't see myself ever wanting more children so I'd be ok with that. It's the recovery time of the surgery that I'm not keen on.

The only true "cure" and indeed the only way to definitively diagnose is to have a hysterectomy from what my gynea told me.

Worth a shot at mirena if that floats your boat and you don't want to go straight to surgery, it works for some.

Good luck. It sucks.

#5 FeralZombieMum

Posted 15 October 2019 - 06:47 PM

I was diagnosed with it via an ultrasound.

A mirena has helped immensely. I am onto my second one, and both times when I had it inserted - it was done at the hospital under a general. They also did a D&C at the same time.

The mirena has changed my life.

#6 Indatree

Posted 15 October 2019 - 07:19 PM

I too have Adenomyosis.. I’m currently on a hormonal medication called Visanne. It’s not a contraceptive and it’s bloody expensive but it’s worked wonders for me. No more bleeding or pain. This was my last option before going down the hysterectomy track. Worth discussing with your health professional. I knew nothing about it even being an option until I saw my 3rd gynaecologist (and after seeing a GP and specialist women’s GP).

#7 Serenity Now

Posted 15 October 2019 - 07:31 PM

I was just diagnosed with it last week. Completely blindsided me, as I’d never heard of it. The gyno gave me the option of mirena, excision, or hysterectomy. I was nervous about mirena as I haven’t responded well to hormones in the past so he is getting me to trial the mini pill which apparently has similar hormones to the mirena and will be easier to stop if I’m not reacting well. I’ve been doing a bit of reading and am really overwhelmed with how horrible it can be and that hysterectomy seems to be the only thing that is definitely going to fix it.

#8 Chicken Pie

Posted 15 October 2019 - 08:45 PM

I have that along with endometriosis and cysts and fibroids

Have a hysterectomy in a couple months

They say a mirena does help but my body rejected it years ago so was not an option

#9 Chapvane

Posted 15 October 2019 - 09:07 PM

I had it and also had endo & fibroids.
I suffered for 2 years with horrendous symptoms before I did anything about it.
I had a hysterectomy earlier this year - wish I had done it sooner.

#10 byjingo

Posted 15 October 2019 - 10:12 PM

I had it diagnosed via ultrasound earlier this year as well. I was actually sent to see if they could find my prolapse, they didn’t, the gyno had one look and now on the list for a hysterectomy!

i never get the heavy or flooding periods, but I have presented to ED a handful of times with pains that OTC meds couldn’t touch. I do however have really bad hormonal moods etc.

#11 Nikki2

Posted 16 October 2019 - 08:05 PM

I had it and had a hysterectomy June this year. Best thing ever and the recovery was almost pain free ( only took Panadol etc on day 2 onwards) and so much better than I could have imagined. Haven’t looked back.

#12 Mose

Posted 17 October 2019 - 05:50 AM

Thank you all.  That's been really helpful.

I have an appointment early in the new year to discuss with my gynaecologist.

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