Hysterectomy - Is it worth it for relief of Endo?

Hi all,

I am new to here having just been diagnosed with endometriosis last week after a laparoscopy. Have been fighting for years to get a diagnosis and finally put under the care of an amazing consultant who diagnosed me before even having surgery.

Have had excruciating period pains all my life and put on the pill at age 15 to calm down my periods. Just told by doctors to get on with it as it was something that some women have to get on with. Have been taking into A&E 4 times with suspected appendicitis but the pain has eased and told I had IBS without any further investigation. Pain kind of got a bit easier after the birth of my son when I was 33 but since then the pain has come back gradually and now at age 42 I am almost constant pain.

I am waiting for my follow up appointment with my consultant but he told me after surgery that he found endo in my uterus, behind it, on my bowel and it has fused my left ovary to my pelvic wall. He has put in a Minera coil to see if that helps calm down the symptoms but as yet has not discussed any further treatment with me.

I started my period last night and I am in so much pain that even max strength co-codomal and ibru don't touch the pain ( this is normal ). After suffering with this pain now since the age of 10 I am at the point where I don't think I can cope with much more. My consultant did mention hysterectomy as one of the options to be considered dependant on the results of my laparoscopy and I am at the point now where I am seriously considering this as it is having such a big impact on my quality of life (my mother had one as a result of her suffering from Endo as well at the age of 36).

Would really appreciate your thoughts on this especially from others that have gone through this treatment and those also considering.

Thank you in advance

xxx

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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

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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?

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Hi, can I ask whether you were ever given the gnrh injections? I’m currently on prostrap which is now not having the desired steps. My consultant won’t consider a hysterectomy because I’m only 32 (I’m lucky enough to have 2 children) and the prostrap isn’t working. I’m now at a loss.

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Hey. Injections were going to be the next stage but my consultant has agreed to move straight to a hysterectomy due to the level of the endo and the fact that having everything shut down with synarel has had a hugely positive impact on the amount of pain I am in. I am also 42 and have had all the children I want so seemed a sensible next step. Operation booked in for 1st March

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Thank you, hope everything goes well for you.

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Yes, I had 2 courses and it didn't work. First time I had decapeptyl with HRT addback and continued to have periods. It was abandoned after 5 months. Second time I had prostap without HRT - I didn't have bleeding but continued to have flare ups of pain.

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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

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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. 😩

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