My gynaecological history leading up to this started at the age of 19, when I entered into my first serious relationship. Between 19 and 23 years old I had experienced various infections and 3 miscarriages. During these ages I had just had my first smear tests and understood very little about gynaecological issues and was not offered very much information.
At the age of 23, I gave birth to a beautiful daughter & this prompted me to explore better contraception than condoms. I approached my GP and agreed to have the De-provera injections every 12 weeks. I was over the moon as these injections stopped my periods instantly, which did feel very liberating at the time. ( I should add, my periods were very regular prior to the miscarriages)
My next trauma was the results of a smear test that showed abnormal cells, this resulted in me attending the colonoscopy clinic every 6 months for these cells to be monitored. I finally had a clear result and was discharged, however a locum consultant had asked me if I had been offered laser treatment, which I hadn’t.
At the age of 26, I started to bleed very heavily, which was very unusual, as I stated before my periods were absent since taking the injections. The GP advised me that I probably had cysts which were now shedding. I was very distressed at this state and wanted to know how this could happen and had to fight for them to agree for me to get a scan. The scan revealed that I had Polycystic Ovaries, as far as I was aware I had not had this prior.
I stopped taking the injections, as I believed this was the foreign agent in my body and I believe to be the root cause of the bleeding. I was advised that within a year my periods would return.......my periods did not return and due to the circumstances in my life I was not planning to have another child at that time, therefore the absent periods went on the back burner. The GP did warn that I needed to bleed at least 5 times for the year to prevent osteoporosis, as per chance I would get 1 or 2 days of spotting throughout the year so was convinced my body would eventually return to normal.
At about 39 I was experiencing heavy bleeding again, hot flushes and general malaise. I was scanned given blood tests and all was clear, hormone levels were fine....in fact the outcome from the scan was that they could not see any evidence of polysystic ovaries....I was overjoyed and now determined to get my holistic life in check.
One of my goals was to learn to swim, (aged 43) during the course of swimming I started to bleed for a month at a time. The GP immediately sent me for a scan and they advised that the lining of my womb was thick and further investigation was needed. For the first time in my life I was glad for the bleeding as I believed at least this is the body expelling the excess lining. I even shared this theory with the Gynaecologist who agreed.
On March 1st 2016 I had a hysteroscopy for a biopsy to be taken....on the day of the op, they also advised that they wanted my consent to do a scrape, which I agreed to.
I was contacted to go and see the consultant on 15th March, she advised me that it wasn’t good news and that I might have womb cancer and the treatment was a complete hysterectomy. Then another lady came into the room who told me she was a Macmillan nurse and was covering for the gynae nurse. She had a book and a form for me to complete so I could get free medication........ I was horrified and completely shocked but hung onto the word, “might”. This made me request their report and findings and I refused to sign anything.
My consultant advised me ‘if she was in my position she would take out her womb and ovaries as there was a 20% chance it could be cancer”.......this only led me to believe there is an 80% chance it might not be.
Due to my distressed state my consultant left me with the Macmillan nurse who had limited knowledge about womb cancer, but her pearls of wisdom were toask for more evidence! I didn’t realise at the time that CT Scans and MRI scans needed to be done.....but when I went back she agreed to book them for me.
This consultant made me feel like an item on a conveyor belt and had no consideration for the decision that I had to make. I realise her records would have stated that I had opted for a hysterectomy possibly saving NHS the cost of the scans.
On my next appointment the scan results were not available but I took my family with me and they had a similar experience. They instantly requested I get a second opinion, this was agreed and I was transferred to a different hospital.
The new consultant started right from the beginning and was very clear about what was happening in the womb; he spent a great deal of time educating me and then was very clear, that this is was my body and my decision to make and the fact that this type of cancer has slow progression.
On May 12th I had my complete hysterectomy by keyhole surgery and I was sent home on May 13th. Two weeks later they advised me that they had caught the cancer at its early stage so no further treatment would be required, however I would be monitored for 5 years.
I’m just really starting to put the pieces together and how blindly you can just go through the medical model, when there are so many opportunities for you to make change.
I would like to share my journey with you and also the fact that, although this is a life changing diagnosis, the professionals working in this area minimise the impact on the woman and can be very insensitive.
It has occurred to me that the language used by the NHS does not give the patient many choices in the medical model. I find much of their work is reactive rather than proactive and without the patient in mind.
I have shared my full journey as I know that I was not given any education on self-care and my journey with the GP has been crisis led. I accept I put my life in their hands believing they are the professionals and would give me fair advice.
I now know that girls and young women need to know about self -care and alternatives to the medical model, as well as being confident to share their concerns without it being dismissed until there are unpleasant symptoms.
I was not aware of womb cancer until my diagnosis. I am from an Afro-Caribbean background and from my research see that women from my community die from this condition which for me is about dying from ignorance.
I have not been able to return to work for the last 6 months due to the menopause and associated symptoms but realise now that life is very short and I really want to make a difference to people and believe that knowledge and appropriate practical support is greatly needed."
If you would be willing to share your story then please get in touch with us using the contcat form.
xx Kaz xx