adenomyosis Diagnosis : I was diagnosed... - Endometriosis UK

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adenomyosis Diagnosis

A1987 profile image
9 Replies

I was diagnosed with endo 5 years ago and diagnosed with adenomyosis on Friday. The consultant told me I have good egg reserve for the moment so to take my coil out and try and get pregnant straight away because I will need a hysterectomy in a few years!

I’m 34, single, no children and now I feel numb, extremely sad and confused! I have no idea what to do.

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A1987 profile image
A1987
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9 Replies
AllthatGlitters profile image
AllthatGlitters

Hi sorry you have this diagnosis. I also have both. Diagnosed around 4 years ago. I am now waiting for a hysterectomy. I was told that getting pregnant would help my symptoms (only for the 9 months) and not to leave it as the longer I leave it the harder it will be. I never went ahead with this. It’s quick a shock once you get a diagnosis isn’t if? Took me a while to get my head around it.

What symptoms do you have?

I have heavy bleeding thorough clothes, labour pains, anaemia etc…..

X

A1987 profile image
A1987 in reply toAllthatGlitters

Thank you so much for your reply. It’s a total shock! My symptoms are, heavy and irregular periods, pain during sex. Constant bellyaches. Bum pain spotting in between periods and loads more o can’t think of right now!

Do you have children? And was having a hysterectomy a hard decision for you? I know I’m not ready for children right now and the thought that it may never happen is hard

AllthatGlitters profile image
AllthatGlitters in reply toA1987

Hi no I don’t have children. I can’t have them now anyway as had 2 ablations to hopefully stop the bleeding and it failed 😞 it’s been a very hard decision for me to have a hysterectomy, it’s probably taken me a couple of years to come to terms with it as when I was first diagnosed and I was in and out of the hospital, doctors etc then told I would probably end up having a hysterectomy. They were right. Symptoms are so severe it’s ruined my life. I don’t work at the moment, the fatigue is unreal as well as everything else that goes on with this. I think once my surgery is over then maybe life can be more normal and fingers crossed pain free.

I am currently on the decepeptyl injection and HRT, feel free to PM if you like xx

A1987 profile image
A1987 in reply toAllthatGlitters

I’m so sorry to hear that! I’ll send you a pm x

Twosugars profile image
Twosugars

Hi there, I can't offer much advice but I'm a similar age and my uterus was found to be adenomyotic after my recent lap. I'm due in to see the consultant to have a formal discussion next month so I'm not sure what will be advised but I just wanted to let you know you're not alone. From what I've read online I thought adenomyosis mostly occurred in older women so I was shocked to hear I had it. But I've had heavy periods my whole life, clots, flooding, leaking through clothes, it's been a nightmare for over 20 years.

I'm married but we've been having no luck with fertility for a few years so this might explain it. I'm not sure what our options are now, hopefully I'll know more after my apt but wanted to send you support x

A1987 profile image
A1987 in reply toTwosugars

Hey I’m grateful for the fact I’m able to speak to women who have had similar experiences. I feel like I’m desperately trying to climb out of a hole but it seems to be getting bigger! Everytime I visited the gynaecologist they made me feel like I was going mad and that my symptoms weren’t valid.

I worried about the possibility of not having children x

Twosugars profile image
Twosugars in reply toA1987

I know what you mean, I had heavy periods for so long and no one really listened. It was only when I started to develop pain in my 20s that I was referred for a lap and was diagnosed with endo and now this. The fertility aspect is frightening but try not to ruminate too much on it. I'm trying to read up on endo and adenomyosis to educate myself as much as possible. I feel like if I can have some control over that it's something! X

joey81 profile image
joey81

Hi i dont have much advise but i was also recently diagnosed with bith endo ans adenomyosis. Ive been ttc to conceive and so its really hard to hear how these conditions affect fertility in some women. Im now 40 with low amh so i dont want the surgery yet. Im trying ivf before i do a laproscopy incase this ruins all my eggs. Its hard to choose between having a family or quality of life.

Jenna96 profile image
Jenna96

Hi,Sorry to hear this.

At 22 I was diagnosed with endo and at 24 a couple months ago diagnosed with adeno.

I too feel the same however will try to stay positive I hope you can too x

Maybe ask about freezing your eggs not sure if that would be an option ? Xx

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