How do I push the NHS for a hysterectomy?

[Dreamsfallapartattheseams]

I have suffered with very heavy periods and excessive pain during ovulation since the age of 12. During my 20's I had various scans and a d&c but it never really solved the issue. In my late 30's things became even worse and I was passing clots the size of the palm of my hand and had to build my life around my periods.

Since 2011 I have had an appointment or a procedure with my gynae every year until 2022. I have endured five hysteroscopies to remove stubborn and recurring uterine polyps and still I was experiencing issues. In 2022 my iron levels fell so low that I needed infusions.

I opted for a uterine ablation in April 2022 but sadly six months later it failed and I now have hardly any bleeding but very painful periods each month. In November 2022 my gynae confirmed the ablation has failed and just told me to take the mini pill and pain relief. I asked for a pelvic mri as my sister has endometriosis and wanted to know what was going on. Mri results came back last December, it has stated that I have deep endometriosis and diffuse adenomyosis!

Gynae then referred me to an endo specialist. He said my options were to leave it and hope menopause will help (I am 51 and still have a cycle) or to have a laparoscopy to see for sure what is going on and excision surgery at the same time. I asked about a hysterectomy but he went out of his way to put me off citing all the negatives of such a big operation and made it out to be a high risk op. So I felt I had no option but to go for the laparoscopy which has a year long wait and that is that, no further follow ups until the surgery. I have been left to deal with it myself.

I have lots of other issues going on with peri symptoms and horrible daily digestive problems. These are taking their toll on my mental health.

So yesterday I went to see a gynae privately. She specialises in menopause, endometriosis and adenomyosis. She has recommended that I have a hysterectomy, she says nothing can be done to cure adenomyosis and even post menopause it can cause issues. In her opinion, a hysterectomy could solve a lot of my issues (she also feels my gut issues could be related to all of my issues yet the NHS gynae wouldn't even discuss tummy troubles, said it wasn't relevant).

The problem is that I simply can not afford a hysterectomy privately. How can I convince the NHS to offer me one?

I'm sorry that you're suffering so badly.

I would ask for a referral to a female gynaecologist.

I'm sorry that you're suffering so badly.

I would ask for a referral to a female gynaecologist.

I'm sorry to hear about all you've been through. I don't have any advice beyond seeing a female gynecologist and then hounding them relentlessly and asking for a clinical reason why they can't give you a hysterectomy. Maybe have a look at some NICE guidelines around endo/adeno and hysterectomy.

I'm still shocked at how poorly some women are treated for female health issues.

Lots of info in the NICE guidelines for endo, in the surgical management bit. If you fit the criteria for it (sounds like you do) and there are no contraindications then I'm not sure how the consultant could say no.

So sorry for you. I had a hysterectomy after pre-cancerous cells were found after routine polyps removal (causing heavy periods). The hysterectomy was complex because they found severe endometriosis (womb fused to bowel etc), but my recovery was surprisingly easy. So it's not particularly high-rise for many. My life is so much better without the painful periods. Keep trying, find a female GP who knows about endometriosis (easier said than done, I know).

I would look carefully at the relevant NICE guidelines/in their absence any guidelines from eg RCOOG.

I got my my private gynaecologist to write to my GP with the recommendation and I am now on a waiting list. It's nearly two years but hopefully moving forward everyday.

Have you seen a copy of the Trust/Board's treatment pathway for hysterectomy? If not, I would suggest asking for a copy.

Agree with PP who said get the gynae to write to your GP to recomend course of action.

Another way is to email private gynae secretary and ask them to put you on their NHS list. Yes you'll still have to wait, but you are under that consultant then and they wont disagree that it needs to happen.

My private gynae would do this.

Thank you everyone.

I will ask the private gynae if she could write to my NHS gynae.

Failing that I will request a consultation with the NHS consultant and go armed with the NICE guidelines.

Fingers crossed