Waiting for a Hysterectomy

[Kittie5117]

Hello everyone, I am writing to ask for any advice/support or similar situations.

I am 39, F, live in Scotland UK

Have been having problems since May 2021 - heavy menstrual bleeding and pain, hadn't had any issues or bleeding for 20+ years on the mini-Pill Degestrel, so it came as a bit of a shock.

No children or pregnancies.

I had a hysteroscopy under anaesthetic Jan 2022 because they thought I might have a polyp in my womb, but nothing there.

In the past 18mths, I have been prescribed various tablets to try and manage the bleeding - tranexamic acid, Norethisterone, Provera. The hormone based medicines caused me side effects over time (weight gain/fluid retention, hot flushes, mood swings, breast pain), so I am currently on the lowest possible dose of Provera to try and manage my symptoms.

In August 2023 my consultant (who has been very understanding) agreed to put me forward for a hysterectomy. They will aim to remove most but leave the ovaries. They should also be able to see what is happening inside my body. Am advised I will be seen within 6 months (by Feb 24?)

I am just feeling so drained and fed up of living like this. I know the end is in sight, but I am worried about symptoms like sometimes bleeding when I go to the toilet. I had more bloods taken today and I am due to do one of those poo - test things I guess to rule out other bowel issues.

Do people here think that it sounds like I have endometriosis inside me? I get a lot of pain, not just when I am bleeding, it is always there to some degree and my tummy can feel heavy like a big bowling ball so it is hard to even move and bend over sometimes!

Thankyou in advance, am just curious if these symptoms are something other people have experienced too.

[MrsPaddingtonBear]

Hello

I’m glad you are at least in the hospital system and have been seen previously. I too am in this situation. I have been going to hospital for about 20 yrs now. I was diagnosed with high level Endometriosis when I was 23. I’ve been bleeding since February this year almost non stop. I’ve had 15 months of zoladex, that stopped working, 4 months of prostap, stopped bleeding for 3 days after the 4th injection then started again. Tranexamic acid, laparoscopies multiple times, cyst removal a ruptured ectopic and 5 miscarriages. Like you a lot over the years. I am now having a hysterectomy next Thursday. Not only because my consultant is retiring but I think he’s given up and can’t do anything else. I’m nearly 50 and have history of female cancers in the family and have had cell change’s myself already previously after smear test so I think it’s also a preventative measure for me. I hope you get seen as soon as possible and they do something to help you. Good luck.

[Marcia71]

it does sound like endo but could also be adenomyosis which is where endo affects the actual muscle of the uterus. That causes heavy bleeding and pain at time of period. Endo can cause pain all month. And bleeding from bum is a sign of endo so hopefully the hyster - and im assuming excision of endo at the same time should help that.

[Cailleach]

Have they not considered doing a laparoscopy to find out if you have endometriosis ( which it sounds like) before going for the hysterectomy?

Other ways of diagnosing it are MRI or ultrasound, these need to be done by someone specially trained in identifying endo.

A hysterectomy does not cure endometriosis, though it would treat adenomyosis if you have it and also of course the heavy bleeding. If you have bleeding from the bowel, as others have said this could be due to endo there ( or of course unrelated).

It would be worth asking if your surgeon has any specialist training in endometriosis. Not all gynaecologists do.

PS just noticed you have had hysteroscopy, hopefully that would have shown if you have adenomyosis, so presumably you don’t.