Hysterectomy without adenomyosis or fibroids?

[Ivy00]

Hi all,

Is there anyone out there who has had (or is planning) a hysterectomy for endometriosis, without a confirmed diagnosis of adenomyosis, fibroids or heavy bleeding?

What symptoms ultimately influenced your decision to have hysterectomy, and how are you going now?

[Hidden]

Hi Ivy, there are a couple of videos up n the Endometriosis UK website you might like to see. They are by a gynaecologist. One is about endometriosis, and the other adenomyosis. She explains that in endometriosis the uterus is often an "innocent bystander" and not where the pain comes from. The endo pain is often from endo lesions in the pelvis - places like uteral-sacral ligaments. So, if the uterus is removed in a hysterectomy, and the endo lesions are missed and left there, the patient will still have the pain from the endo lesions. So, excision of the endo lesions is recommended instead of a hysterectomy.

[Ivy00 in reply to Hidden]

Thanks so much for your quick response! I will check out the video's. Although I am very interested in hearing from women who have made this decision, in their own words, based on their own experiences.

Unfortunately for me, I have had excisional surgeries twice and my endo has recurred. I do blame my uterus, and have serious doubts that it is indeed an innocent bystander. lol. I am very suspicious that it has played (at least) some role in my endo recurrence.

[Topsy2014]

I do have adenomyosis however my pending hysterectomy isn't to treat this. It's ultimately because I have a large nodule attached to my bowel womb and cervix but they can't reach the nodule without removing my womb first as its in the way but due to the damage to my ovaries they will be removing these too along with my cervix. If you have any questions I'd be happy to answer! X

[Ivy00 in reply to Topsy2014]

Its so tricky. I have to have another excision surgery soon too, and do wonder how they might navigate the mess. Thank you so much for your support, please let us know how you go and all the best with your upcoming surgery xx

[Chicken2012]

Hi ivy00. I’m on a list for a TAH . What influenced my decision , is that i have had an injection of deceptyl . I have Endo , ovarian cysts and adhesion my ovary is attached to my uterus. I also had lengthy period and was in a lot of pain every month. I was offered one due to the injection being effective for me. The wait is long on the Nhs. It’s a very big decision. I’ve been waiting since June 2020 xx

[Ivy00 in reply to Chicken2012]

Hi Chicken2012, Does that mean you are having your ovaries out too? because of the cysts, and being stuck to the uterus? Lucky for me last time both ovaries were stuck to pelvic sidewall and not any other organs. Not sure about this time. This is something I would consider too - I just want to get to at least 45 if my annoying ovaries will allow it. xx

[Ivy00 in reply to Ivy00]

I hope you get some news soon re your surgery xx

[Chicken2012 in reply to Ivy00]

Hi , yes it does I’m taking a drug called Tibolone . I am 41 years old. I had my ovaries switched of for a break . My mum had a hysterectomy and left her ovaries and still has problems. Talk it all through with your consultant for options . It seems already you have been through a lot? How old are you now ?

[Ivy00 in reply to Chicken2012]

Hi Chicken2012. Its good to know that the tibolone worked, at least you have some idea of what to expect after surgery. I am 35, so maybe to soon to consider removing my ovaries, but at the rate they are going, there might not be much left - the endo has recurred on both ovaries every time. Thanks so much for your support, and I hope its not too much longer for you xx.

[Chicken2012]

Thank you June ish for surgery fingers crossed . I hope you weigh up all your decisions and get support.