Persistent HPV. Hi all. I am 62. Had abnormal smear at 24 was told was nothing to stress about.
Follow ups at gp surgery for the next 5 years continued to be abnormal. Age 29 I was sent for colposcopy it was the beginning of a long haul of fear and anxiety. I was told by gynaecologist he had never seen a problem like mine in his whole career. He said I was born with immature skin in the inside it was to do with the transformation zone which all girls have and usually small and closes up on its own. Mines was a very large area and being so young at the time I didn’t fully understand what it all meant. There was no internet to refer too back then and medical
Books offered no understanding of my condition.
My gynaecologist told me then and there that I did not have cancer at this stage but it was going to be a long process ahead as my immune system wouid not deal with the hpv and having this large transformation zone allowed this virus to attack my body beyond the cervix and womb. I learned that this was quite a unique diagnosis as usually hpv is very specific in where it wants to be and is usually contained to the cervix /womb. I attended the colposcopy clinic religiously twice a year for smears and check ups. Each time I attended felt like the first time as I would never know what I would be told. Sometimes all looked good and I would be told see you in 6 months other times I would be told I would have to be admitted overnight for high up biopsies as suspicious areas were detected and it wasn’t possible to do the biopsies in the clinic. I would have to wait 8 weeks everytime for biopsy / smear results to come back to me and it was scary never knowing what the tests would show. All along the way I attended the hospital on my own and I never discussed or shared my problem with anyone as o felt ashamed that hpv was associated with being sexually transmitted even although I never had multiple sexual partners. I realised with age that this was unnecessary stressing as statistics show that 8 out of 10 sexually active people come in contact with hpv but as I’ve said this thing was not talked about in the 80’s so freely and I also realise the mental anguish this caused me as although I thought I was coping and I had reassurance each time I was seen at the colposcopy clinic the realisation of what I was told from the off set sat with me and I feared what would be in the future.
As the years went on, in 2005 I was seen again at my usual check up at the hospital. I was feeling low,unwell and quite thin for my age of 45. I had a feeling all wasn’t well and my gynaecologist told me that the time had now come that I would need a full radical hysterectomy I knew before it happened that this would not be the end of me having to attend the clinic as I was told years before hand that even if I did have to have a hysterectomy that I would still need to be monitored and checked for the rest of my life.
After the surgery my gynaecologist came to see me he told me due to so much diseased tissue out with the womb and cervix that this was the biggest open abdominal hysterectomy he had ever done.
I was very weak for months afterwards and it took me a long time to feel like myself again.
The first smear after the hysterectomy came back abnormal and I had to go for biopsies again as the problem was now able to go down the vagina area which already had a cuff removed during the radical surgery I had just had. Each month after my surgery I had what I knew was a hormonal bleed like you would get with a monthly period. It freaked me out as I knew I didnt have a womb and where was the bleed coming from. I went to see my gynaecologist who told me it was impossible as there was no womb he would have to see where this bleed was occurring from. When he examined me he said to me that “this could only happen to me” and again he had never seen it and only biopsies would confirm what and where it was coming from. Again I had another6 week wait for results. The results showed I was right it was indeed hormonal as my body had told me and was caused by vaginal endometriosis that would continue to bleed until after my menapouse was over. My gynaecologist told me he could remove my ovaries, put me on the pill or just accept the bleed monthly until I was through the change of life. I opted to do that as I couldn’t face more surgery. I was offered mistletoe therapy which I took for 7 years. I had to inject my stomach twice a day in the hope it would strengthen my immune system. The Dr who administered the miseltoe advised my gynaecologist to inject the msiteltoe directly into the vaginal area which he did. It was very painful but after 25 years of so much invasive procedures and treatments I was willing to try anything to make the hpv virus go away. In 2018 almost 27 years later I was finally discharged
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Oh my goodness poor you! Thank you for sharing your experience. I am having hysterectomy on 15th May due to recurring CIN3. Where the cells are is too hazardous to remove with cone biopsy or letz. I know I will have to continue with monitoring after the hysterectomy as HPV can still develop in the vagina. Your story helped me to appreciate that my journey has been short In comparison - thank you again and I wish you well
