Adenomyosis : I know endometriosis is not... - Endometriosis UK

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Adenomyosis

gettingusedtoendo profile image

I know endometriosis is not given the attention is deserves but does anyone find this is even more so the case with adenomyosis? I struggle to find much info at all and it’s almost treated as a sub-type of endometriosis even though they’re separate conditions? Seen a lot of articles cropping up lately about endo which is brilliant, and there are lots of support pages of instagram for example, but nothing about adenomyosis really? If anyone has anything they can share that’d be so helpful.

31 Replies

Yes!!! I felt like I was just getting my head around the lack of info/support from medical professionals about endo, and then I was diagnosed with adeno and was thrown completely again! I've even had 'oh, at least it's only adeno...' rather than endo, but they're both as bad as each other!

Sorry to hear you’re in the same situation and also that you’ve had people be so flippant, especially when you have both :(

If anything the idea of adenomyosis worries me more!

Yes it’s pretty poor the lack of information about adenomyosis and I had never heard about it until diagnosis. Even the NHS don’t have a page about it, only Endometriosis x

Very good point about the NHS page or lack of. That’s shocking!

I’m especially finding it hard to find info about adeno and fertility

Even when you tell people the name of this illness (adenomyosis) they look blank. Don’t think people have heard of it. Wish I hadn’t as it’s ruining my life x

I’m sorry :( Can I ask if you’ve tried the mirena coil?

Hi I haven’t as refused it because I didn’t want anything or anyone prodding inside of me, couldn’t stand any pain xx

I feel exactly the same. The idea makes me physically cringe

I have lost count the amount of times a doctor has told me to get the coil and I keep saying no, we have the right to choose what we think is best for us. Even a smear is agony for me so no way we’re they going to put a coil in x

Yes I totally agree! I was diagnosed with endo originally but since finding my amazing consultant he also found my adenomyosis in the uterus and actually in terms of the bigger picture that’s more of a concern for my fertility than my endo! There’s hardly any research, there’s very little options for treatment apart from uterine resection which makes chances of miscarriage even worse it seems like a very unrecognised condition! Definitely more could be done

Sorry to hear you are going through the same x

I found this page useful - m.adenomyosisadviceassociat...

Thank you!

Yes! I was thinking this exact same thing! There aren't even any NICE guidelines for it. Any articles I can find are hardcore medical journals so I need to Google every other word! I'm actually thinking it's my adeno that is causing more issues than endo. I have a merina coil now that should/could help reduce the size of my uterus/lining but other than that *shrug*. I'm just hoping what I'm doing for my endo, lifestyle wise, might help both but too soon to know! I'd be up for joining a group for adeno peeps but I can't find one! Maybe just need to create one!

Exactly! It’s really frustrating isn’t it.

So I had a consultation with a BSGE accredited dr today. Adeno really was a footnote—I had to bring it up. He told me to ‘hurry up and have my babies’ in a sort of half jokey way. I’m a b it dumbfounded tbh.

That is just not good enough! I appreciate they're the experts, but at such a difficult time I don't think it's appropriate that you had to bring it up and they were partially joking about fertility!

Sorry I have nothing to share that would be helpful other than echo your comments and frustration. What I do to get by is when I search for help with adeno and nothing comes up (as is always the case) I then search for endo, and whatever is recommended for endo I just try even though I have adeno but not endo. I can't relate more with what you've observed but like you said, the fact that endo is beginning to get some attention is a step in the right direction, hopefully adeno someday too, fingers crossed!

Thank you, I hope so too :)

Totally agree - I was diagnosed with adeno and endo at the same time and had never heard of adeno. I was lucky my gynae was very knowledgeable and actively tries to keep up to date with recent research etc but even she said for adeno its crazy how few studies are currently taking place and how little info there is out there. Most current studies I found seem to centre around the outcomes of IVF for people with adeno not treating it in itself in anyway.

I had a laparoscopy to remove endo adhesions and then we have started TTC but my gynae highly recommended the Mirena coil which I plan to try in the future. I also have been recommended Mefenamic acid and Tranexamic acid which I know a lot of people are on for endo too and for me seems to help slightly lessen the heavy periods I was having but hasn't seemed to have reduced pain during my periods. If you haven't heard of them maybe something to consult your doctor about in case they think it could help your symptoms.

I wish you luck you can find something that helps and hope that in the not too distant future there is more info out there for us all <3

Thanks so much for taking the time to write that. Will certainly look into your recommendations. Wishing you best of luck too and hope Mirena coil gives some relief

I have had endometriosis since 2015 and been recently diagnosed with Adenomyosis since last year and my life has been a living hell! It's been so hard to get the best treatment available for endometriosis let alone Adenomyosis and alot of people don't even know about the condition. I've realised my condition has got with Adenomyosis as it has spread all over my uterus and womb. They just want find it easy to say to have a hysterectomy but that's not possible when I want kids. I'm due to have laparoscopic surgery and currently on the waiting list. My condition has gotten worse since the delays in treatment and getting to see a consultant on time due to covid 19. I just have hope that the surgery will help me with some relief.

Best of luck to you with the surgery, Razina x

Hi ladies, i dont have anything extra to add except i echo everything you have all said. I have also been ttc so adeno is a pain from that context. Docs just shrug it off like it makes no difference to anything. I have both endo and adeno. And with adeno my diet is now more restrictive then it was with endo! However adjusting diet helps me with symptoms.

Hi, wishing you the the best with TTC. X

Yup, When I was diagnosed the physician was so blase about it, didn't explain and left me to research on the internet. I turned to medical articles and journals to get the basic information about the condition.

So very true

Ive got adenomyosis and no endometriosis can be found Im so poorly about 9 months ago I started feeling sleepy all the time and unwell and like I’ve always got a water infection before this I worked everyday come home and done all my housework now I can’t even keep up with my housework I used to work 10-15 mile a day at Work as im a home care support worker and I don’t drive I’ve been told I can’t have a hysterectomy till I’ve took 4 more months of prostap injections I’ve just complained cause I can’t mentally take another 4 months of feeling like this, is this similar to the way u feel xx

That sounds so horrible. I’m sorry :(

I had stage 4 endo and a little adeno as my doctor had put it but I used to bleed heavily for 1st two days that it was hard to operate and I was constantly anaemic. But as you say nobody knows about it. And its considered less serious than endo as well.

Lynne_support profile image
Lynne_supportAdministrator

Hi gettingusedtoendo

We have a webinar on our website on the topic of adenomyosis, you may find it helpful endometriosis-uk.org/adenom...

Best wishes

Lynne- Endometriosis UK

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