Endometriosis UK
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Surgery - when is it just time to say ''Enough''? And has anyone had radiotherapy instead of surgery?

Hello, and thank you to everyone for the great support you have given me since I joined this community, I cannot tell you what a difference it has made.<br /><br />I would really be interested in hearing some of your thoughts on this<br /><br />I won't bore you with the long version - god knows, I bore myself with that! - but very briefly, I have Ovarian Remnant Syndrome with endo, have massively extensive adhesions and scarring, and a cyst on the remnant which is proving to be a bit of a swine, adherent to everything except my tonsils and my hair extensions by the look of the MRI.<br /><br />I started ProStap injections last month - I am so looking forward to giving myself the second one today - and I am hoping that will batter it into submission for a while, but if it doesn't, and I well remember getting to the stage where I was not benefiting at all from Zoladex, then my options are few. <br /><br />One of the options is more surgery. I am lucky to have the most fantastic surgeon, whom I trust implicitly and who succeeded last time in freeing up bits of me that had been stuck in the wrong place since the dawn of time, but here's the thing - they all end up stuck together again. This latest cyst is stuck to - and I shall announce these in no particular order, like they do on Strictly Come Dancing - my bowel in lots of places, uterus, pelvic side wall, abdominal wall, some peritoneal thingy the name of which I have forgotten and which I will remember 3 seconds after I hit 'send', my bladder and left ureter. And probably some other stuff too.<br /><br />So basically I am hoping that the prostap will allow me to hobble on to the menopause (never imagined I would be wanted to hurry that along, but the sooner the better) but what if it doesn't? Or what if it transpires that even shutting the ovary off doesn't help much because of the fact that I no longer have organs as such, but rather one multi-functional tangle of knackered bits sitting there like a pile of discarded knitting? I really do not want any more surgery. I swore that I would not have any more, mainly because any benefit seems so short-lived. But you know what it's like at 3am when you are awake and yelping in pain so bad the neighbours are calling the RSPCA - you would consider anything. <br /><br />So here - finally - is my question. Have you come to a point where you decided ''no more surgery'' and if so would you feel like sharing what the key factors were that made you decide?<br /><br />And, because I like to squeeze every ounce out of you while I've got you, second question - I have read about the use of radiotherapy to zap ovarian remnants where surgery is not recommended, although I haven't come across it in the UK, where I live. Has anyone any experience of this?<br /><br />Right, I will stop there because I can see you all thinking ''Who is this woman and will she never shut up?''<br /><br />With many thanks for your anticipated replies xx

3 Replies

It's an interesting prospect. Mum had radiotherapy for cancer- and it left her with permanently large patches of burnt skin at the exit points of the radiotherapy beams, bit unsightly but small price to pay for cancer.

However it hasn't stopped the issue of scar tissue build up, which is stil a problem, and even though it is not invasive surgery it does cause damage that needs to heal and that can lead to more adhesions so it isn't the absolute ideal solution. Plus the treatment is every day for weeks and weeks

and the damage is caused to everything lying in the path of the radiotherapy beam, not just its intended destination target the ovarian remnant patches.

I wouldn't be surprised ifsomeone who is riddled with it was found unsuitable for zapping- just because the scale of the problem and the locations too.

But it is worth looking in to if you do want to definitely avoid a general anaesthetic procedure.

1 like

Thank you so much for your reply. I must say, you are selling it to me really well :) Seriously, that's been incredibly helpful - I was considering it for two reasons, one being that I thought perhaps it would be less invasive, but I can see that it still has the potential for widespread damage to healthy tissues, so maybe not that great, and the second being to avoid a GA, as you rightly surmised. I haven't yet mentioned to my surgeon the teensy problem of the heart murmur I have managed to develop since he last operated, but obviously it's a concern .

Thanks again, really helpful.


I have thought no more surgery the reason why is because

1. It never helped me , i had the operation 1st one i was diagnosed with stage 4 endometriosis ( i was already diagnosed with poly cystic ovaries.

2. From there everything started going wrong the pain got worse more intense.

3. I had my 2nd operation within the same year because the pain was so bad that i couldn't cope anymore.

4. I had the 2nd operation with ovarian drilling and was diagnosed with yet another condition Adenomyosis

5. it affected me massively mentally because then i started noticing my chances of having children naturally were slim and im still un sure if i will ever be able to have children the other route.. im 22 now ive had these conditions since 14 diagnosed at 19.

6. The pain faded out for 6 months after the 2nd operation but its now came back with full revenge on me and the way i couldn't cope before x 1000 and thats how i feel but i try and be strong and get through it because what else can i do. x


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