Botched and Broken

[BluStarFern]

Last August I had the vast majority of my reproductive system removed. I'd been receiving treatment for endo for 18 years, surgery gave me hope of finally being free of a disease that has dominated my entire life.

9 months post op and the poor standard of care I've received from Birmingham Women's Hospital has left me in permanent pain, incontinent, completely sexually dysfunctional and too poorly to work.

Here's where it went wrong.

My surgery, performed in August 2023, was planned in July 2022, based on an MRI taken in May 2021.

My ovaries where healthy in 2021 so I asked to keep one.

By the time they operated, I had an endometrioma in one ovary and a ruptured cyst in the other.

They left me with the endometrioma!

They left it and didn't tell me!

I had to request my medical notes to find the truth.

The net result is I still have a diseased organ stuck by scarring to my pelvic floor making pelvic floor rehab impossible.

Here's where it gets really dirty!

4 months prior to surgery, I spoke to the Special Endometriosis Nurse at BWH and asked for additional scans to be done, my condition was much worse and I'd been in A&E. The nurse said there was no point as I'd be having surgery within the year. She told me my pain was probably neuropathy and prescribed contraceptive pills.

During my pre op appointment, I asked to speak to a Consultant but was told there was no time for that, despite me having technical questions regarding surgery.

Immediately prior to surgery I reiterated my desire to keep a healthy ovary to the surgeon.

The operated, sent me home thinking I was disease free and made no attempt to follow up. I guess they hoped the endometrioma would magically heal itself.

Birmingham Women's Hospital, an Accredited Endometriosis Centre...ignored me then operated using data 2 years out of date and left me in a worst position than when I started.

I've complain to the hospital, that's on going.

I've sought legal advice, the law is not on my side when it's no win, no fee.

I have a complaints advocate, but they don't actually offer any advice.

I've spoken to my GP, they just tell me to speak to the hospital!

I'm supposed to make an appointment with the Hospital to discuss my latest MRI results.

I want the remaining ovary gone but I feel violated, and have lost all trust in this hospital.

Ive spent 18 years reading stories of countless women who were given a new lease of life post hysterectomy, it's was the hope that I'd be one of those women that kept me going.

Endo has stolen my careers, a chance of a family and now with the help of medical professionals my hope of a normal, productive life.

What am I supposed to do now?

I'm devastated and have been rocked to the core.

I regret the surgery, I should have listened to my gut and delayed it, It didn't feel right but I was desperate.

I let myself get medically mutilated because I was desperate.

This is what the NHS now consider acceptable health care and it makes me sick.

[KlP28]

Reading this has made me so sass. Sending my best wishes & comfort to you! You poor lady.

Is it a possibility for you to seek private health care? & get hopefully sorted once & for all.

Or speak to your GP, about going to a more private led hospital to get you sorted?

I’m just gob smacked at how you have been treated.

Please take good care xx

[BluStarFern in reply to KlP28]

I think trying to transfer my care is my only option. I can't afford private treatment, I got too poorly to work waiting for surgery, which ate up my savings.

Thank you your kind words and thoughts xx