Fall out from endometrial cancer.

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by flossieflyblow on Fri Mar 13, 2015 3:35 pm

Fall out from endometrial cancer.

I Had a hysterectomy and bilateral salpingo-oopherectomy for stage 1 grade 3 endometrial cancer followed by vaginal brachytherapy. The vaginal vault has still not quite healed.
Obviously I had to stop the HRT that I had been taking to help combat the terrible waves of fear and panic that accompanied each hot flush (presumably surges of adrenalin) that would wake me at night. I could usually 'talk myself down' from the fear wave during the day as it's easier to reason sensibly when you're awake!!
What dismayed me was that after 6 months I had to broach the subject of raging surgical menopause myself as it seemed that I should just grin and bear it in silence, which of course I had been doing. I finally gave in and tried some Clonidine but felt absolutely awful and so stopped it. Who should I go to for any help and advice? Should the GP or Gynae-oncologist be able to help? I can't tell you how tired I am of sleepless nights, feeling morose and being anxious.
Also sex is painful. Not like it was when the radiotherapy had finished, but when and after my husband ejaculates. Could it be the prostaglandins in the ejaculate? It lasts for 30 mins to an hour after sex. I can't mention it to my oncologist as he goes pink at the word sex and I can see that the gynae oncology nurse has got far worse things to deal with.
And there's another thing......!! Why oh why is there no topical 'something' that can be applied with a soft applicator following brachytherapy? Doesn't anyone know what it's like to have your vagina walls stick together and then tear apart like velcro when you forget yourself and take a big stride during the initial side effects of being burned by the radiotherapy? And why is there virtually no useful research that's being done on the use of vaginal dilators for vaginal fibrosis? Talking of which, the treatment seems to have affected my pelvic floor as the occasional drop of urine that I lost when running had become more. But I was told 'Oh well, it's only a few drops'. Fortunately I was able to self-refer to the gynae physio who has been able to help me despite my Olympian efforts at pelvic floor exercises!
There is so little good information out there and I think that women just don't talk about these issues. We can all talk about breasts now but to say 'uterus', 'vagina, or, shock, horror, 'vulva', gets you almost arrested!
Sorry that this is such a tirade, but I just wonder how much medics really nderstand about how these sorts of problems and ttreatments can affect us. All the time I'm telling myself that I'm very lucky that it's not ovarian cancer or pancreatic cancer etc but I suppose I just feel 'dropped' by the system.

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Mr. Hugh Byrne, MRCOG
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by Mr. Hugh Byrne, MRCOG on Sun Mar 15, 2015 1:46 pm

Re: Fall out from endometrial cancer.

Short answer to a long question: I think you need to go back to your surgeon and nurse and be as frank as you are here. Depending on the tumour type you could still be suitable for vaginal and/or oral/transdermal estrogen.
Mr Hugh Byrne
Consultant in Obstetrics and Gynaecology
St Georges Hospital


2 posts