Endometriosis UK

Hysterectomy booked!

I suppose I'm looking for some positive feedback! 

Today I booked my hysterectomy anticipated for early July.

It's not been an easy decision and I'm still wobbly about it.

Close friends and family are being great but my husband isn't happy. 

I would love to hear some positive feedback to reassure me I'm making the right decision.

According to gP's and specialts this really is my last option. I've been lucky enough to have two beautiful daughters. I'm 40 this year and I just want to start being in control and enjoy life again. To be more predictable not a waiting game!

I'm not under any illusion that this is a cure but it's bloody good step.

I'd appreciate any thoughts. X

7 Replies

What is your endo history to have lead to the decision?


At 11 I stated my periods and each time it was angony at that time in the 80's the doctors just said it was normal and as I got older it should improve. At 16 I came home from a family holiday and my stomach was swelling and the pain excruciating. My mum took me to A&E. The doctors were convinced I was having a miscarriage well I would have had one on Mary then as still a Virgin! I proved it when the finally scanned me to discover ovarian cysts particularly one larger than an orange. I was planned for surgery the next day but burst in the night. Causing severe damage to my left ovary and tube. It was decided there and then I needed birth control. For several years I managed just about but avoided life as soon as my period came missed school, failed my A levels etc... I couldn't cope. Doctors didn't take me seriously. In and out A&E on the bad days. Over the years I tried various different birth control pills non really helped so I was finally put on a pill that stopped periods. I'd been told having children would be 50/50 due to the damage of the infection after the burst cysts and susequent cysts. I think i was about 19 when they wanted to look further Into my case. Growing up I didn't try with my relationships because sex was too painfall. I must have been about 21 when they said is could be endo and wanted to perform a lap. So they did and it was a mess. They removed what they could and then put me on strong painkillers. I had more removed 2 years later. By this time is met my now husband. At the time id come off all meds as part of a review and some how I fell pregnant. My first miracle. It's wasn't easy pregnancy or birth and straight after I put on the Depo injection. Which was great for about 5 years but started to be ineffective so I tried more pills and the coil! Worst thing ever! 2010 I was taken in for another lap where it was even worse. My ovaries were stuck, my bowel and bladder were stuck and there was a lot scare tissue from precious po's and c section. I then decided I would try for another child. Two miscarriages and an emergency appendectomy i'd given up! Finally I did fall pregnant and have my lovely second daughter again by c section due to complications. I went back on Depo straight after but it become ineffective. I then developed tumours on my thyroid and had the left side removed last year After all this and the experimence with the medications, painkillers, strain on my marriage, my age and what a period means to me. I've decided enough is enough. Everyday is agony and I'm heavily dependent on condine as tramadol didn't agree with me! Sex is painfall. My moods are all over the place. My energy is non existstant. Need I go on!! It's time. I'm aware it's not a cure but it will limit a lot of my problems and the rest I can control! I'm ready and want to start having a life I can plan not wait for this disease to decide what I can do each day! 

I'm no stranger to surgery so fully aware of risks etc...

Sorry to ramble on!


Are you having your hysterectomy in a BSGE endo centre with a proposal to remove as much endo as they can at the same time? Surgeons in general gynaecology won't have the expertise to do this.

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This is why I have to what till July so I can have both surgeons available. Yes the plan is to remove ovaries and cervix I think and them as much endo they can find! 


I also have also been diagnosed with IBS since the age of 19.


Yes, that is the usual mis diagnosis for rectovaginal endo and tragic as it should be so obvious to any medical professional that endo should be investigated early with such symptoms to avoid what you now have. There are some who will advise against the hysterectomy and ovary removal but my personal view is that it is the appropriate course for you along with full excision. Just be sure that you have regular oestrogen blood tests if you go on HRT. It needs to be a low dose and you should aim for your oestradiol levels to be under say 400 pmol/l. That is very important to minimise the risks of any residual endo being activated but without your uterus you shouldn't have any new endo.

1 like

Thank you. I've found your input helpful and reassuring. Let's see how it goes. X


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