Hysterectomy - Is it worth it for relief of Endo?

Hi Cheza,

I had a hysterectomy at 31, 2 years ago and the pain has more or less gone away. I know this option doesn't work for everyone and as I didn't have any children I am suffering from the aftermath of this now but i am still glad i went through with my operation as i have been able to get some sort of life back.

x

I had this surgery back in March at the age of 39 - I had adenomyosis (endo in the wall of the uterus) plus bowel and bladder involvement. I had endometriomas in my ovaries and a hydrosalpinx in my right tube and my bleeding and pain were out of control.

For me it was the right choice. I was diagnosed late and the disease was very advanced and my options were limited - I was told right from the start that I would have to have the hysterectomy and oophorectomy, and all the treatment I had was just about getting me through the waiting time. None of the drug treatments worked. There were serious concerns about my bowel (I had a large rectovaginal nodule) and my kidney, as it was also strangling my left ureter.

In terms of providing pain relief, it has been an absolute success and I am pain free. I can't remember the last time I needed pain meds, not even paracetamol. However it is a horrible surgery and a long and difficult recovery - they will tell you 8 weeks, but in reality I would say 6 months plus. Surgical menopause is also really hard - if you have your ovaries removed they will give you HRT but it does not feel like your own hormones and you need to be prepared for that.

Are you being seen at a bsge centre?

Hi

I recently had a full hysterectomy due to endometriosis, I am 41 and have 2 beautiful girls. I have had endometriosis since I was 19.

My surgery was 8 weeks ago and I have spent years in agony and really struggling to function with day to day things without the assistance of some type of drug. For the last 2 years I have had to take tramadol and liquid morphine just to get me through the day.

A hysterectomy is a huge operation and for years I refused to have it, but I reached a point where I could not bear to let my children watch me struggle any longer and the thought of spending my life on painkillers was not appealing.

I have found since having the operation I have really struggled with my emotions, I constantly cry (before my op I never cried), I hardly sleep, my night sweats are terrible to the point that my husband can no longer sleep with me due to the amount of heat I produce and the worse thing of all is i have become depressed. I do feel the benefit of not waking up in pain everyday and I am so glad not to be passing heavy blood clots daily (sorry to be gross) ....... I am lucky I have amazing support around me and I am sure in time I will come out the other side and feel this was the best thing I have ever done for me and my family.

Life with endometriosis is a battle, a daily one where unfortunately This condition takes over everything. You have to decide wether you have the strength to carry on fighting it or hold up your hands and say enough is enough

Good luck with what you decide and take care

Sarah

Thank you all. Having only just been diagnosed I am still trying to get my head around the fact that this can’t be cured and I have to find the best way to cope with it. I have a follow up appointment with my consultant on Friday to discuss how much endo I have in more detail and what he suggests as treatment for me apart from the coil that was put in during my surgery.

At the moment I am still in agony with the pain but I realise this can be influenced by the operation and the coil will take its time to have an impact but I was so bad today I almost dialled the emergency services as I had collapsed on the floor in agony whilst on my own in the house. Don’t want a life of being reliant upon pain relief but also don’t see any other option as the pain is so bad I am struggling to function. 😩