Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Menopause

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Hysterectomy with Ehlers-Danlos

6 replies

Phunkychicken · 27/03/2025 07:17

I have always had awful periods, currently 50 next month and under gynae.

Diagnosed with ovarian cysts, adeno and endo. Have pain and flooding, often pain during and bleeding after sex but after having most recent polyp removed bleeding after sex has diminished.

have been offered a hysterectomy (on hrt and they removed mirena as felt was adding to bleeding and do feel better with it gone - currently on Evorel 100 and vaginal Utrogestan for 12 days).

have had 2 urgent suspected cancer referrals due to symptoms (have also had melanoma and bcc too).

for years Id have bitten their hands off being offered a hysterectomy, but for all my recent surgeries (7 skin and one ankle rebuilding) the wounds have dehisced after the stitches came out, currently have a 3cm open hole on my face from latest biopsy.

theyve said they’d try and do it vaginally so minimal stitching but honestly does anyone have any ideas what I might be looking at healing wise? I’m ‘only’ under gynae so no rheumatologist to ask.

or, know if can get NHS referral to an EDS experienced gynae. I’m actually a bit traumatised from all my surgeries as I tell them the wounds won’t hold, they look knowingly at me and tell me they know what they’re doing then act perplexed when I return with seeping holes

OP posts:
mamakoukla · 30/03/2025 16:49

Would the EDS UK society be able to direct you to people who are knowledgeable in this area eg surgery, gynaecology etc?

www.ehlers-danlos.org/support/helpline/

Completely get your concerns; keep a photo record so you can show pre-op surgeons etc what happens.

stitching and healing -

connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/eds-and-skin-surgery-what-should-my-doctors-know/

mamakoukla · 30/03/2025 16:52

And this one as well -

www.ehlers-danlos.org/information/the-skin-in-hypermobile-ehlers-danlos-syndrome/

Phunkychicken · 30/03/2025 18:39

Thank you, I think I’ll try them, am sure I’m not the first person in this situation

OP posts:
mamakoukla · 30/03/2025 23:29

Good luck! Hopefully someone with more knowledge will be along soon.

mamakoukla · 30/03/2025 23:34

I put UK + gynaecologist + EDS into google and it found this person on the EDS website

www.ehlers-danlos.com/directory/vik-khullar/

Phunkychicken · 31/03/2025 08:05

Hmmm, I will ask how to get referred to them but seeing as I’ve waited nearly 2 years just to see my local Gynae I don’t have much hope. I will email them though.

Thank you!

OP posts:
New posts on this thread. Refresh page
Swipe left for the next trending thread