Surgery nightmare: Well i had my... - Endometriosis UK

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Surgery nightmare

Nickyt79 profile image
8 Replies

Well i had my hysterectomy on 13th November and I have had a nightmare since due to the aftercare I received. I ended up with paralytic ileus and my bowel twisted, i also got sepsis and was so poorly i litetally felt like i would never get out of the hospital alive. (I must stress that this is not due to the hysterectomy itself but to the poor care i received). I am now 4 weeks after surgery and my hysterectomy side of things are going well.....i found out last week from my doctor being as my consultant failed to tell me anything about my surgery that I had several large fibroids removed that they didnt even know I had even though i had scans anf proceedures that I thought was meant to identify these. Anyway sorry about the rant.....what I am really interested in is what oestragen only hrt do people use and do you find patches or tablets best? I know there is no 1 size fits all but just trying to gauge peoples opinions. I am 38 so will be on it for a while.

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Nickyt79
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JOSANDY40 profile image
JOSANDY40

I am confused that any surgery should be carried out with 3 operation s over a short period. Every operation you have will bring more scare tissue. I hope your surgeon is a Endo Specialist. By the sounds of this you needed a bowel surgeon present? I feel that in the future you would be wise to get a second opinion before any further surgery . Every operation carries risks! It's has been found that medication is better for this disease. Your body can only have a few operations. Further pain can be causes by nerve damage. I have had 6 operations, 1 life saving. My pain has only had a few mths without over the years. I can't walk far, my bowel nerves don't work properly, emptying is painful and difficult. Sex is often impossible. Just standing in the kitchen is always hard. I now have problems with many organs. There isn't a simple fix. I am disabled now and live on morphine most of the time, therefore can not have a normal life. Hopefully your Endo will level out as you get older. Take care, love yourself. X

Marcia71 profile image
Marcia71

Sorry you’ve had such a bad time.

Did you have your ovaries removed? I did at my hyster and was advised to take a combined hrt to limit chance of endo regrowing. I tried patches and they weren’t for me and am now on Kliofem tablet that’s been pretty good for me.

Good luck.

Nickyt79 profile image
Nickyt79 in reply toMarcia71

Yes had everything removed including ovaries. I also have systemic lupus so im trying the patches 1st on the basis they have a lesser risk of blood clots being as my risk is higher with lupus. I have been told that I only need oestrogen only hrt as the progesterone is to protect the uterus and womb? Not sure if this is true though or not.

Marcia71 profile image
Marcia71 in reply toNickyt79

I was told need progesterone to keep oestrogen in balance. As it’s oestrogen that feeds endo. If surgeon is sure all endo has gone then oestrogen maybe ok.

It’s all v confusing. I was given that advice at bsge clinic after a general gynae had given me oestrogen only after my hyster and ovaries out and endo kept growing causing problems.

Nickyt79 profile image
Nickyt79 in reply toMarcia71

Thank you for the advice Marcia71

I had my hyst and BSO in March and was started on tibolone after 3 months which I am still taking - my bsge consultant said I would have to take it for a minimum of 6 months. GP didn't really know enough so I've been referred to the menopause specialist at the hosp but my appointment isn't until february.

My bsge centre have said that oestrogen only HRT isn't suitable for women who have had endo as taking oestrogen alone increases the chance of the endo returning so we need to take a combined oestrogen/progesterone HRT, preferably a patch.

Nickyt79 profile image
Nickyt79 in reply to

Thank you so much for this information....I will definitely be asking why they say I only need oestrogen only ad I have had Endo since my teens and that is why I had the hysterectomy. They know i have inflammatory changes in my pelvis due to it so know it wasnt contained in what has been taken away. I feel that I am always battling woth 1 medical professional or another yo get answers and proper treatment at the minute.

Judan profile image
Judan

I had a TLH and BSO with endo excision. Consultant prescribed Elleste Duet Conti - combined HRT- but GP refused to give me it. Ended up with a private prescription from consultant- as other ladies said, both hormones to prevent endo regrow the. Single hormone is as per NICE guidelines for hysterectomy but no endo

Hope this helps xxx

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