Karen’s journey
In the United Kingdom, around 55,000 hysterectomy operations are carried out every year. 1 in 5 women will have a hysterectomy at some point in their life. The most common age group is between 40-50 years of age. Many women have hysterectomies for a number of reasons, these include: painful, frequent and heavy periods, fibroids and cysts, prolapsed womb, or cancer of the vagina, cervix, uterus, fallopian tubes or ovaries. A hysterectomy is classed as a major life changing operation and only done when there is no other option available and may be done to improve someone’s quality of life or to save their life.
This is Karen’s Story.
I’m proud to be a Hyster Sister and cancer survivor. I am post-hysterectomy and now having the best period-free time ever. Through having the hysterectomy aged 44, I totally bypassed erratic periods, hot flushes and mood swings, and thought I had got off lightly. But four years later, aged 48, I was diagnosed with stage 3 Bowel Cancer that spread into the nearby lymph nodes and vagina, and now wear a permanent colostomy bag and have the ‘Barbie Butt’. This weekend, 7th May 2022, I remembered and reflected on my hysterectomy journey, with a mixed roller coaster of emotions, which wasn’t easy to cope with as a woman who has never married or had children, because we live in a community of cosy coupledom and happy families. It can often make you feel isolated and lonely and excluded from society. I would like to share my journey with you to help other women going through a hysterectomy. My story one day will be someone else’s coping mechanism. Here’s how it started, the beginning of my Hysterectomy journey…
It all started back in 2015, with fibroids and ovarian cysts and a benign tumour attached to the Uterus. I had a full Hysterectomy, because of the tumour, which was constantly growing and when removed, was the equivalent size of a five month foetus. The pre and post care and surgery was done at Good Hope Hospital, Sutton Coldfield, West Midlands, under Mr Maloney, my Consultant and Surgeon and his team. I spent three days in hospital recovering from the operation. It marked the end of my love, marriage and baby dreams. I always wanted to get married and have children, but I never found the right man, just the wrong ones who often belittled me, lied, deceived and cheated on me. I walked away from them, because I deserved better and worth more than being with someone out of desperation, fear of missing out on a wedding and children. Or being with them out of a fear of being left on the shelf and alone. Instead I concentrated on my thirty five year career in travel and tourism and aviation industry, whilst gaining qualifications in these subjects. I’ve lived, flown and worked in this country and all over Europe. I consider myself educated, intelligent, independent and well travelled.
William Shakespeare, Stratford Upon Avon and The Cotswolds, featured heavily in my hysterectomy journey and recovery. With many wonderful day trips down there and visiting the Shakespearean properties and going on the open top bus around Stratford Upon Avon and the beautiful Shakespearian countryside. So much so that I did two and a half years working for The Shakespeare Trust in their properties as a visitor assistant, children’s activity host and working as a security and events host too. I also did an online Shakespeare course and passed with a distinction from Warwick University. In many ways Shakespeare and his works helped me cope with my hysterectomy and the loss of a potential wife and mummy life. Because his plays deal with love, loss, betrayal, tragedy, overcoming adversity to become triumphant. My old life was replaced with a new life that is different from most women’s lives, but is just as happy, fulfilling and right for me. A new life in Gloucestershire. Five years after my hysterectomy, and in recovery from Bowel Cancer and getting used to living with a low grade brain tumour, I moved from my home city of Birmingham to Cheltenham, ‘Gateway To The Cotswolds’ to be near my Sister, Alison, who lives there. We have the Cotswolds and Shakespeare ‘s Stratford Upon Avon right on our doorstep and it’s nice to be living a semi-rural life, with views of the Cotswolds Hills and horse riders and tractors down the main street.
I was determined that the hysterectomy wasn’t the end of my life, but only the beginning and there was more to life than love, marriage and babies. In this world not every woman, through hysterectomies, cancer treatments/surgery or brain tumour treatments/surgery can have babies. Instead I invested in myself and in my media/social media dreams and passed my degree and journalism courses. I attended Coventry University and graduated in 2020, BA Hons Sociology. I then went onto NCTJ and BCTJ journalism colleges passing my Certificate In Foundation Journalism and Certificate In Travel Journalism and Travel Writing. I am now a freelance broadcaster and journalist. I also enjoy creative writing and poetry, through my love of William Shakespeare. I am now living the dream and my best life ever. I have my own facebook blog, ‘Karen’s Cancer Journey’, which is a journal of my cancer and low grade brain tumour journey and talking about cancer and brain tumours.
A timeline of the symptoms I experienced:
Early 2014, aged 44, I began to have very painful periods that went on longer than usual and I was losing lots of blood. I put it down to being middle aged and beginning the menopause.
Going into 2015, the pain in my tummy started to get worse and the bleeding from the vagina turned into haemorrhaging that was uncontrollable. I was very ashamed and embarrassed. Sometimes during the night, I would begin to haemorrhage and I would wake up in the morning and my bedsheets and duvet would be covered in blood. It looked like I had been murdered in my own bed.
The blood was a mixture of very red watery blood and towards the end it turned dark red with lots of blood clumps in it. It was beginning to look like an alien had invaded my body. Even going to the toilet was upsetting for me, because I was fearful of what I would find down the toilet pan. I have to wear Tena ladies sanitary pads, big bulky ones to absorb the bleeding. By this stage I was permanently living in black trousers and dark coloured tops and jackets.
I saw my GP and he just put it down to being middle aged and having heavy periods. I was prepared to go into the menopause.
Then one day in mid March 2015, I went out with a then friend for Afternoon Tea, at an olde worlde tea room and was having a wonderful time. When I got up to go to the toilet the pretty flowery cloth seat cover was covered in blood and a pool of blood around me. I panicked and ran off to the ladies toilet and by doing so left a trail of blood behind me. In the cubicle the blood oozed from me and again it resembled a murder scene, it was gushing out and it wouldn’t stop. I remember crying and shouting “Please make it stop, I can’t take any more.” I rang 999 and the ambulance came out to me and took me on a blue light to hospital.
In Birmingham Heartlands Hospital, A & E department, doctors agreed this couldn’t carry on. I was so embarrassed twice in the hospital, I was flooding the hospital bathroom and bed with uncontrollable bleeding from the vagina.
In March 2015, I had an urgent referral to see Mr Maloney, senior gynaecologist at Good Hope Hospital, Sutton Coldfield, in the West Midlands. He examined me and looked at my medical notes and told me I had fibroids and ovarian cysts and a benign tumour attached to my uterus.
After the operation, I was moved into recovery and at around tea time I was moved onto the main ward and within an hour I was sitting up in bed eating a cheese sandwich and drinking lucozade and talking to my Sister.
My gynaecologist was doing the evening rounds, I said “Good Evening Mr Maloney”, as he walked straight past me. He hadn’t recognised me. My gynaecologist consultant and surgeon had to do a double take, and remarked to me that he couldn’t believe how well I was looking after having life changing surgery.
I spent three days in the hospital, then went home. I came out with a blazing trail of stars and the chance to start a new life for myself post hysterectomy.
I am not afraid now to speak up about my hysterectomy, cancer and low grade brain tumour journey. It’s my very own story and part of my life of the brave and strong woman I have become today. My mission is to reduce the shame and stigma of hysterectomies. Having embarrassing benign/cancerous tumours in the sexual reproduction organs is something I embrace and talk about now. There is really nothing to be ashamed or embarrassed about having fibroids or cysts, or a benign tumour attached to your uterus, or even having vaginal cancer. It’s about breaking down barriers and raising public awareness by talking about it.
My double tummy scar, stoma hole and Barbie Butt are now a part of me and tell my story of survival, despite the odds against me. They tell my personal story of bravery, courage, determination, strength and resilience, to never let my hysterectomy, cancer or low grade brain tumour get me down, but to live it up each day and be so thankful to be alive. Now I make the most of every day, because every day is a precious gift from up above and I feel that the Angels are walking beside me and encouraging me to get the message across. Everything comes around full circle, always. What is lost can be found again. Having the hysterectomy, cancer and low grade brain tumour was not the end but only the beginning of a new chapter in my life. What is broken can be fixed again.
Having a hysterectomy is not the end of the world, it is only the beginning of a new world and the start of many adventures, fun and endless new possibilities. It’s about sharing my story and helping other women cope with this life-changing experience. That does affect a woman emotionally, mentally, physically, psychologically and spiritually and on many levels it’s a journey of self discovery and renewed hope. The lessons I have learned are: You are not defined by your medical conditions or hidden disabilities, you are defined by being you.