Endo and adenomyosis: I have been informed... - Endometriosis UK

Endometriosis UK

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Endo and adenomyosis

Sammiestock profile image

I have been informed by my consultant today that I not only have endometriosis but also adenomyosis - anyone else ?

Thanks

10 Replies

I had both, I’ve had a hysterectomy though so no longer have the adenomyosis X

Sammiestock profile image
Sammiestock in reply to

Thanks for replying. Do you still have endometriosis? Hope you don’t mind me asking, but what helped ? What treatments / surgeries did you have before the hysterectomy?

I am having a laparoscopy and the marina coil fitted next and then if I still struggle I will have hysterectomy.

Thank you

in reply to Sammiestock

My Endometriosis has reoccurred since my hysterectomy unfortunately, not as significantly as before but I’m going to need to have another excision surgery. I find that diet helps a lot. I avoid gluten and dairy, and have reduced caffeine and sugar recently which has helped. I didn’t react well to any of the hormone treatments such as the pill or Mirena. The hysterectomy was the best option for me but it’s important to know it isn’t a cure for Endometriosis, although for me it helped a lot with reducing my symptoms. Xxx

I have both. I have gone through adenomyomectomy Nov'17. My doctor told they could not remove much because you know the adenomyosis looks so much like our uterine wall that they can't really differentiate much. But it helped me conceive my first baby after that. I was facing infertility issues because of both. Its been a year after my baby is born. I think it is growing back. I was said, we can't really get rid of adeno unless we have a hysterectomy.(Hope there is a better treatment coming up soon). Somehow i have a feeling that removing an organ is not a treatment :(

No I agree , removing an organ is not a treatment. I hope in the future there will be more treatments and cures available.

Thanks for replying, and congratulations on your baby 😊

Yes, a hysterectomy is my final option too but we’ll just see what happens with my next lots of treatments x

Hi,

I do have both. I had 3 surgeries for endo, now 1 year 8 months pain and medication free. For me plant-based diet helped a lot. Waiting for IVF now. My adenomyioma is not too big so my doctor said that after pregnancy Mirena coil can help to keep in bay.

My mum had adenomyiosis too and first she had uterine embolization that helped for some time. That is not very invasive. But hers was quite severe and non-stop bleeding so ended up with hysterectomy.

Yes, had Adenomyosis and Stage 4/ Deep Infiltrating Endometriosis. Had a total hysterectomy for the Adenomyosis, Uterine Fibroids and Endometriomas/chocolate cysts on both ovaries. Excision was carried out on all the Endometrial adhesions/fibrosis outside uterus which effected my bowel and bladder and on my uterosacral ligament etc.

Am several months in recovery now and no Endometriosis or Adenomyosis pain at all.

You must however make sure that you gynaecologist is an experienced Endometriosis specialist and has training in minimally invasive surgery as they have the experience and training to identify and expertly excise ( not ablation!) the Endometriosis.

A BSGE Endometriosis specialist or Nook Surgeon is needed. Did you or are you being seen by one?

Join ‘Nancy’s Nook Endometriosis Education Group’ on Facebook to educate yourself as much as you can so you can to make informed decisions on your treatment path.

This site is a discussion group not a support group I must add. You will have to answer a couple of introductory questions and then they will be given a week to read the introductory units etc before you can ‘like’ or ‘comment’ on posts etc.

I learnt so much and am still learning.

Endopaedia is also very good.

Good luck. 🙂

Me too! 🙋🏻‍♀️I’m 25 and have both endo and adeno. Was diagnosed with both at 21.

I can’t tolerate any form of birth control so managing symptoms is tricky. Right now I use diet and supplements, the strongest painkillers I can get my hands on, pelvic floor therapy and have surgery for the endo if things escalate.

But doing ok! I don’t know what the future holds but trying my best to navigate it at the moment 💪

Good luck with everything. It’s hard to get your head around at the beginning but it is possible to still live a happy life in spite of these these diseases. You got this!

Thank you all so much ladies . I’d never even heard of Adenomyosis- but so many of us suffer , with no answers to help sometimes ☹️

I will do some research with the information you have passed to me and am ever so grateful for you taking the time to answer.

Take care and thanks again xx

I'm in the same boat, I havent really received any information on the adenomoyoasis or anything to help, did you get any information?

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