Hysterectomy questions

[Hannah27]

I have endometriosis and adenomyosis. I've had 2 laparoscopic operations to remove the growths from endo, last surgery there was hardly any endo and it was likely adeno would be the cause. Bleeding and pain has been exactly the same since last surgery. I fainted from my last period as so heavy and ended up off work on morphine. I'm 36 and have completed my family. I have a private appointment tomorrow and want a hysterectomy as soon as possible.

What questions would you ask?

What do you wish you had talked through before surgery?

Waiting list is around a year on NHS in my trust, private seems about 6-8 weeks but is around 10k. Has anyone gone private?

Thanks.

[Malachitegoose]

I am an NHS patient having preop appointment at the moment for a hysterectomy for deep infiltrating endometriosis adhering between bowel and uterus causing bowel issues, suspected adenomyosis and various other areas of endometriosis growth. I am having a total radical hysterectomy with salpingectomy and oophorectomy within 6 months, I have been waiting 2.5 years and can not afford to go private and still help my kids with uni etc. Oophorectomy is the bit which is essential if you are hoping this surgery will end the endometriosis inflammation and growth. Although some people claim that there's a chance it might not be successful as endometriosis may produce its own oestrogen, most people with endometriosis find their pain and other symptoms settle down after oophorectomy., but if course HRT is essential. I am 46, you may still get questions about whether you will change your mind about wanting more children. Good luck with it all.

[Sunsetzzs]

Hi,

I’m in the US so I can’t answer about going private. I bled terribly for about ten years when at the age of 40 I asked my doctor about a hysterectomy. He was against it bc of my age, but agreed that I had just cause and so let me make the decision. It was so annoying bc he thought I just wanted to be done with my period. I had the hysterectomy with my ovaries left intact. They biopsied my uterus and the doctor actually apologized to me- he said I tested positive for adenomyosis, and that the bleeding would have continued to be awful.

Questions I would ask-

How likely is the blood loss you’ve been experiencing to cause low iron and/or ferritin? (I was so anemic and didn’t know it).

Does the doctor perform vaginal hysterectomies, and is it an option you want to consider?

Pros/cons of keeping your ovaries intact, and what the doctor’s thoughts are for you.

My having the hysterectomy changed my life for the better bc of how much and how heavy I bled for years. I do wish they would’ve checked my iron bc I was too naive to realize how much the blood loss affected me- and it was years later before a doctor finally did.

Good luck!

[Lilspice]

Know I've missed giving you questions in time, hope the appointment went okay. Wanted to add that an incredibly useful website I found when I was considering my options was Hystersisters.com. It's got so many articles about options, disease info and advice for navigating doctors. It's US run by other patients but I did see a lot of UK people on forums. There are lots of great forums, there wasn't a question I had that hadn't already been asked when I searched. I'd say most important thing is continue to advocate for yourself, ask for second and even third opinions if you need to!

I had my hysterectomy last year, I got my diagnosis of fibroids through private as the NHS wasn't great for investigating my symptoms thoroughly, but I had to have the actual operation on the NHS as I had other complications.