Does anyone have adenomyosis? What happens? - Endometriosis UK

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Does anyone have adenomyosis? What happens?

skinnypiglet profile image
7 Replies

Does anyone know about adenomyosis. Just diagnosed with this yesterday! Have Endo already and had a pre op scan for my second lap. ... Multiple cysts and adenomyosis detected. Am so upset and worried about infertility etc ... Am getting married next week and am so stressed!! Please help!!

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skinnypiglet profile image
skinnypiglet
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Chrissie66 profile image
Chrissie66

Hello

Adenomyosis is very basically 'just' endometriosis inside your womb. I want to say don't panic, but I know that's not very helpful!

What I'm trying to say is that adenomyosis isn't 'worse' than 'normal' endo, it's extremely common and treatable. If your doctors know that you are planning a family, they will know that they need to be managing it, and just like 'normal' endo there are all sorts of things they can do.

But you know what - nothing is going to change between now and next week anyway - try and put it right to the back of your mind and concentrate on your wedding. You've got years of endo stress ahead of you, tell it to bugger off for the next couple of weeks because you're only going to have one wedding day and you deserve to enjoy it!

Congratulations, and have a lovely day xxx

AlaskaHolly profile image
AlaskaHolly

Enjoy your wedding day as much as possible. I say that because wedding day are stressful in and of themselves. The fact that you have endo in your uterus just is a fact. Don't let it be an extra stressor.

Worrying about infertility won't change anything but try and have very honest discussions with your new husband about how you both feel about it. I ended up having a hysterectomy about 6 weeks after we were married but we had talked it through and it was okay. The worrying was over so there was no question we just had to move forward. I don't know your age but I was 40 at the time but still I had no children. Maybe an easier decision because of my age and pain level. My surgeon made a great point of having me wait on these decisions until after the wedding stress and he made sure I wasn't just making the decision because I was in pain. He wanted me as close to "in my right mind" as I could be considering the circumstances. My point is that worrying doesn't help but honest discussions with all involved do help.

It's a long journey as chrissie66 said and talking about it helps. Just remember our husbands are men and they do get overwhelmed. I've learned to edit the complaining and just explain to him what's happening and how he can help. I complain to my girlfriends.

Congratulations and just enjoy the day. As chrissie66 said put it all away for now and deal with it later. There's nothing to be done now.

I wish you a lot of love and understanding in your marriage.

skinnypiglet profile image
skinnypiglet

Thanks Ladies, I know i need to learn to chill now just everything is overwhelming me. My mother-in-law is putting so much pressure on me to give her a grandchild by next year inspite of my problems. She keeps saying just have a D&C and sought it out...makes me want to scream. H2B is being supportive though I think his tolerance levels are waning...is extreemly hard not to complain especailly when in pain!

I'm 35 so borderline as to my fertility levels naturally decreasing. Sometimes i do want a child sometimes i think i don't have the patience ; however as he really wants one I'd hate it that my problems are the reason I couldn't conceive.

Am on list for another lap but will see someone after the wedding..and decide what to do...Do either of you go private. I wish i'd taken insurance out years ago- have an awful NHS hospital- but know with ongoing problems they don't cover you? xx

Chrissie66 profile image
Chrissie66

Hi again

You poor thing, it's bad enough that we put ourselves under so much pressure with endo without adding in the extra stress of over-clucky 'grandparents'! Have you seen the Endometriosis For Dummies book? I found it particularly useful for 'accidentally' leaving at my mum's house when her advice was just to Go And See The Doctor And Get It Sorted Out. Or, worse, to Pull Myself Together, It's Just Womens Problems...

I've never been private but then I have been exceedingly lucky in having not one but two absolutely brilliant gynaes.

Is there another NHS hospital anywhere near you that your GP could refer you to?

C xxx

AlaskaHolly profile image
AlaskaHolly

I've learned some interesting techniques from that book as well. I even had my husband read some parts of that useful little book.

You know, everyone was pretty hands off about being grandparents so that was nice for me. I'm a flight attendant so maybe they thought that I didn't want to have kids.

I also wasn't sure if I wanted a child anymore. I think you do lose your patience with this disease. I have 2 close friends who were treated and subsequently had babies but not everyone is that lucky. And no one knows why it works better for some than others.

I live in the U.S. and I have very good insurance but it doesn't necessarily mean better treatment it just insures I get the treatment. I just think that treatment is limited.

Of course you'll have to complain about the pain. I just try and spread it around so one person doesn't have to bear the brunt of it all.

Things are going to be what they are and you're doing your best. Just keep reminding yourself that you are doing all you can. Give yourself a break and have fun at the wedding.

You will work it out and we'll be here to listen.

Take care,

Holly

daniellewright profile image
daniellewright

Hello, if you would like more support please feel free to like the Adenomyosis Advice Association on Facebook or find the website via all usual search engines. We are based in the UK but are available worldwide - free of charge to help and support - anytime. Kind regards, Danielle x

skinnypiglet profile image
skinnypiglet

Thanks all xxx

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