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Pelvic Radiation Disease

16/5/2021

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Pelvic radiation disease, or PRD is a term that is used to describe a variety of symptoms that can arise after radiotherapy treatments to the pelvis as a result of various cancers such as cervical, womb & prostate.
The radiotherapy targets the affected area but sadly sometimes it also damages healthy cells. The damage can affect everyone differently and depends on the type of cancer and how much treatment each patient has.
Symptoms can start during treatment itself or sometimes it can start after treatment has ended. They also range from mild side effects to totally debilitating ones.
The symptoms, if severe can impact your quality of life dramatically. Changes in bowel habits, urinary problems, bloating, faecal incontinence, constipation - they are all possible side effects. The good news is they can often be treated or controlled to some extent by a change in diet and other lifestyle changes and also medication.
According to The Pelvic Radiation Disease Association, around 90% of patients who have treatment to the abdomen or pelvis for cancer get some bowel upset during treatment but 50% develop gastro-intestinal symptoms which affect their quality of life and range from minor to major issues.

I have lived with PRD for 11 years now since I had my treatment for womb cancer. The bowel issues started on day 3 of the external radiotherapy and it's been ongoing ever since. As a vegetarian for over 30 years I eat a high fibre diet so have had to adjust that considerably; due to lots of trial and error I now know what foods make the issue worse so can eliminate them from my diet. 
However, my issues are compounded somewhat by the fact that as well as the PRD I also have an epi-gastric hernia that they are reluctant to repair due to the PRD. So I swing between bouts of faecal incontinence & severe constipation - often within the same day. Also, I was recently diagnosed with type 2 diabetes which has meant that I have had to change my diet yet again and after a few years of relative stability with my bowels I am back to having several bouts of really bad diarrhoea every week, which is no fun at all and therefore my quality of life is zero. 
It's getting to the point where I don't want to eat because I dread the consequences. Because of my other health issues I have limited mobility so rarely make it to the loo in time which is not only embarrassing but tiring. The medication I was put on for the diabetes made the issue worse so I came off that and am reluctant to take any medication that lists diarrhoea as a side effect!!
I've come to the conclusion that most people don't realise the debilitating affect that PRD can have - lets face it anything related to toilet habits or bowel issues is always treated as a joke.
I don't like talking about my issues, especially when its to a complete stranger on the end of the phone when I recently had my PIP re-assessment but I do so to raise awareness and end the stigma.
​If you think you might be affected or want more info then check out The Pelvic Radiation Disease Association
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Menopause Matters.

5/5/2021

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I went into surgical menopause at the age of 46½ after my hysterectomy that I had due to womb cancer. That was in January 2010. Call me naïve but I never for one moment realised that I would be plunged into menopause; maybe it was because I so focussed on the cancer and just didn’t think of anything else.
I was initially told they were 99.9% sure they had got all the cancer & I wouldn’t need further treatment but when the oncologist reviewed my notes he decided I needed chemotherapy and then external radiotherapy. That lasted until mid July, the week before my 47th Birthday!

It was a week later that I experienced my first hot flush and boy was it a big one. I think the treatment may well have been masking the menopause effects as I had a tough time with the chemotherapy especially.
I spoke to my gynaecologist about it; more about the long term effects rather than the hot flushes as both my Mom and my Aunt, her elder sister had osteoporosis and I was concerned about being diagnosed with it too. He told me not to worry about it; his reasoning was that because I had been big all my adult life and not yo-yo dieted I had technically been doing weight bearing exercises. When I first mentioned it to him I only knew about my Aunt having osteoporosis, I only learnt about my Mom having been diagnosed a few weeks later so mentioned it to him a gain at the next appointment as I was even more concerned knowing they had both been diagnosed but again he was adamant that there was nothing to worry about.
I had also been told that I was unable to have HRT because my cancer had been oestrogen receptive but I was not given any further advice by either him or my GP. When I went to see my GP and spoke about menopause issues I was told that all women go through it and I should just “learn to live with it”. She was a female GP too!!!

Well, I’m now 11 years on from going into surgical menopause and although I no longer have hot flushes I am convinced that the medical issues I now have are as a result of not getting proper menopause care. The list of health issues just keeps getting longer. I was hospitalised in Oct 2020 with heart problems; had a mini stroke & was diagnosed with diabetes. I suffer with insomnia, terrible fatigue, memory & concentration issues; cognitive issues as well as lymhoedema; underactive thyroid; pelvic radiation disease; an epi-gastric hernia that they won’t repair because of the bowel issues the list goes on. Add onto all that the effects of self isolating for the past 12 months due to covid and I am now housebound and virtually reliant on my husband (who has his own health problems) to care for me.


Running Womb Cancer Support UK has made me more than aware that there are many women who are not getting proper menopause support. Like me, they are being denied HRT and not being given any other alternative help other than anti-depressants which are not the answer.
Over the past few years I have searched for information, not only for myself but  that I can pass on to the many other women who are struggling.
Diane Danzebrink, who runs Menopause Support
  also went into surgical menopause after a hysterectomy. She has been a wonderful source of information & support with her website and FB page & closed support group. She is passionate about the need to change the way menopause is seen and make sure that women get the proper help & support they need.
Just because menopause is something that is inevitable and will happen to most women at some point in their life does not mean we should just accept our lot and put up with it. It can have major health implications if not treated properly and in many cases can lead to mental health issues and even suicide.

We deserve better which is why I keep sharing the petition that Diane set up calling for better menopause support from GP’s, in the workplace and in education. Please if you haven’t already signed then do so. If not for yourself, then your daughter, sister, mother, best friend etc.  It’s not just a petition for women either because this issue affects men too – they have mothers, sisters, daughter, partners.
This affects everyone in one way or another so please sign and share across all your social media platforms – this is important
.
​https://www.change.org/p/rt-hon-elizabeth-truss-mp-make-menopause-matter-in-healthcare-the-workplace-and-education-makemenopausematter
.
Picture
image courtesy of Menopause Matters
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    Blog posts about life with womb cancer; by me and other womb cancer fighters and survivors. Plus occasional guest blog posts on relevant subjects.

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