VACO

I have encountered many battles in my life time with survival being the top of the lot. However, the biggest battle I have had to encounter over the last few years, is living with the effects of VIN lll, which has persistently recurred affecting my entire vulva – (external genitalia) since diagnosis in 2003, however, according to medical records it was discovered in the year 2000, I was never informed until 3 years after. This is the equivalent to the abnormalities found in relation to my cervix, for which I have received treatment since 1990.

I spent all these years just accepting that those laser treatments to my cervix were as common to the female population as having a period. Every other woman I had ever spoken to about the cells on my cervix appeared to have had the same problem at some time in their lives, so to me, I thought it was nothing to worry about. I have undergone numerous surgical procedures in the battle against preventing cervical cancer as I have proven to reach CIN – (cervical intra-epithelial neoplasia) stage 3 (highest stage of pre-cancer) since the age of 18.

Then, in February 2003, I noticed a change in the skin on my vulva. Id had patches of discoloration for quite some time, however, I thought this was due to the years of constant  itching and aggravation due to the constant diagnosis of thrush, but now there were areas that were raised and slightly bumpy. I decided to go straight to the Genito Urinary Medicine department of my local hospital.

I suppose like many ladies, for many years I just assumed that I was extremely susceptible to outbreaks of thrush. I was never without a tube of canesten cream in my bedside drawer. It was the only relief I could get from the intense itch. I would waken in the night scratching myself so hard sometimes that I would find skin and blood under my nails from the sores I had caused.

I had no idea that I had anything other than thrush, nor was I ever informed  by anyone  that this was more than a susceptibility to thrush.

I was examined by a Doctor in the clinic and biopsies were taken. I was informed that there were areas of concern and was immediately referred to a consultant within the gynaecology department in the hospital. I had no idea what was wrong with me but I felt in my heart that it wasn’t going to be good news.

In March 2003, I attended the hospital to receive my biopsy results. I was ushered into a room where the consultant and the hospital oncology nurse were waiting. I can remember how my pulse was racing and my legs were shaking as I sat in front of the desk.

I was informed that I had developed a very rare disease that I would have to live with for the rest of my life.

I was also informed that I would have to alter my lifestyle in order to accommodate visiting the hospital every 4 to 6 months for close monitoring. The consultant went on to inform me that he could conservatively monitor the changes, that were already stage 3, or I could go straight ahead and opt for laser treatment to my vulva.

Was there a choice? I asked myself.

I was diagnosed with VIN – (vulval intra-epithelial neoplasia) stage3, the condition being equivalent to that of the cervical intra-epithelial neoplasia (CIN stage 3) and otherwise known as vulval cancer stage 0, also known as carcinoma in-situ (CIS), -  the stage before invasive cancer stage 1.

I think at this point the walls were closing in on me and I asked the consultant which part of my vulva was affected, he replied “all of it”. I still couldn’t quite grasp what I was being told and asked to be drawn a diagram. He drew the entire area of my external genitalia. Everything, being the outer lips – the labia majora, the inner lips – the labia minora and the entire area back to front from my anus to my pubic area.

My world crumbled before me.

I heard the Consultant tell me that I would eventually need a radical vulvectomy but there was no idea of time scales in relation to the number of years that I would have before I would lose every part of my genitalia. I opted immediately for laser surgery; I was in a state of shock, mixed with terror. I asked what had caused this VIN and was told directly that no one knew the causes, I was just one of the unlucky ones and it was extremely rare for this to develop in women my age.                                                                                      

I remember being told that its usually only elderly ladies who had been known to be at risk of this type of condition.

I had no idea what to tell people about my diagnosis when I left the hospital that day. Having come to the conclusion that it was best to go ahead and have my genitals burned and lasered in order to remove the cells that were of concern, I had no real idea what was in front of me or how my life would actually be affected.

All I had as I left the building was a little green card with the bold print VACO written on it with contact details for a woman called Carol. All I was certain of was that I knew my life had been turned upside down and I was sick to my stomach with worry for my daughters. All I could think of was “What if this turns to invasive cancer”.  “What will happen to my daughters if I die”.

I had so many people asking me what was wrong and I had no idea what to say other than I have a rare cancerous type disease. No one could understand what it was, I had no idea myself.

The day arrived when I was having the first laser surgery.

I had been drawn a diagram of the areas that were to be lasered, however, I was soon to discover that the area lasered was far more extensive than anticipated. I was burned in large areas from my clitoris to my anus. There were even burns and sores on the outer edge of my labia majora where that too had been lasered. The odour was horrific and when I informed the nurse of this, I was informed that it was “just” rotting flesh that was dead as a result of the burns.

What a lovely way to describe my genitals!!!!!!

Things went from bad to worse, I was left feeling vulnerable and frightened on a day patient ward watching patients leave to go home with their families.

I was alone, I had to ask for my catheter to be emptied, I then had to ask for some water to which I was told “oh yeah, I forgot about you”, I had my food slammed in front of me with such force whereby the food slopped off the plate and I had nurses sat on the window ledges discussing rates of pay and telling me to shut my ears.

As a result of the even more horrific treatment from the nursing staff during the first 24 hours after my operation, the only person I had that I could call at the time for help and support, at a time of sheer desperation and terror, was my line manager, in my then employment. She arrived at the hospital and demanded that I be moved to a hospital where I would be cared for in an acceptable manner.

My consultant arrived on the ward just as a close friend arrived to visit me, arrangements were made to transfer me to another hospital, however, no transport was provided for me and I was told to get there in my friends car.

I had a catheter in situ and I was pumped full of morphine! The risk of contracting an infection even in sterile conditions was extremely high due to the surgery alone, but being forced to make my own way to the other hospital in my friends car posed risks far greater than just an infection.

When my consultant visited me in the days that followed, I voiced my concerns over the way I had been treated and mentioned that I had been advised that the way in which I had been “transferred” between hospitals was against all hospital policies, especially when a patient is under a prescribed dose of morphine, with a catheter and at high risk of infection.

I was told in an aggressive manner “I moved you didn’t I, what more do you want”.

At that point I felt completely alone. I was made to feel like little more than a piece of dirt.

I had to wonder why I wasn’t entitled to the care, compassion and respect that patients were supposed to be shown by the very people who work within this so called caring profession.

I was discharged after 6 days and the pain was horrific. I suffered infection after infection and the healing process took months..

I requested that I be referred to another consultant during a follow up appointment as I felt that I could no longer tolerate being treated with so much disregard and disrespect on every occasion when I came into contact with this particular consultant.

This resulted in the consultant accusing me of having a personal dislike for him. I explained that I didn’t know him personally therefore I couldn’t form any personal opinion of him, I could only judge on his unprofessional approach towards me and the severe breakdown of any Dr/Patient relationship. If I were to carry on under the care of someone for the rest of my life I had to feel comfortable with that person.

I was told that I would need to be referred to Manchester, which was miles out of my way, as there were no other consultants in this area that specialised in my condition and it was to be that or nothing.

Thankfully, the oncologist nurse took some pity on me and I was eventually referred to another consultant within the same department of the same hospital. It became obvious at that point that this consultant had wished to make my life as awkward as possible. As if things weren’t difficult enough.

It was a matter of only a few months after the operation had been performed when it was discovered that the laser had not been successful. Only 6 months from when I had been extensively lasered and I was admitted once again for further laser surgery.

On this occasion I had to endure having an epidural inserted incorrectly in my spine, left for three days until I was screaming for it to be removed and left with permanent nerve damage whereby I remain to have numb patches in my legs and feet.

I carried on attending hospital every 3 to 6 months thereafter, having biopsies, excisions and a further  laser surgery to my vulva, along with numerous of the same to my cervix.

A period of around two and a half years went by in a state of denial.

Dreading hospital visits and operations, I became almost robot like. Refusing to allow myself time to think, I ploughed myself into work, even during periods of recovery I spent the days at home immersed in mountains of paperwork ensuring that my clients were still being given the best of my ability even in my absence. however, each time I went into hospital I came out feeling more and more vulnerable due to the dreadful way in which I was treated.

By this time I had been diagnosed with VAIN – vaginal epithelial-neoplasia and AIN - anal intra-epithelial neoplasia. I had developed multi - focal VIN, which was affecting every part of my sexual organs and genitalia.

I had been pleading with the specialist to stop lasering me as I couldn’t cope with the pain and the emotional strain of accepting that this was how I would spend the rest of my life. I stated that I wanted to elect to have a “radical vulvectomy”,(That was as my first consultant had referred to the procedure.) I was refused on the grounds of my age and the emotional and visual impact, but in all honesty, we were able to see that the laser wasn’t working for me and I couldn’t bear the thought of suffering and being lasered for the rest of my life.

I felt completely ignored. My feelings were of no concern. I was now feeling like little more than a medical experiment being used for nothing more than medical research based on my age and the progressive recurrence. I was, in my opinion, a lab rat.

Then I was given the bomb. I was told that no matter what happened, whether I chose to have the vulvectomy or not, due to the nature of the VIN and the fact that it is a skin condition, the chances were, that a vulvectomy would not work. He went on to say that even the new skin would eventually become diseased therefore a vulvectomy would not be an option for me.

My entire world rocked at this point. I had felt that the vulvectomy was the only way forward for me. I needed just one major issue to deal with. I needed to get my life back without each and every decision being made around the VIN and the hospital.

I felt completely helpless.

Everything began to suffer when depression set in. I felt that my children were suffering watching me suffer and how could I continue to put them through this. But the fact is, my children are the only reason I have continued to fight this demon, and for their sake I had no choice but to keep on fighting.

The only thing I had to be thankful for in relation to the NHS was the wonderful compassionate GP and District Nurses I had when I was at home.

When myself and my now husband decided that we would set up home together, we moved area and I registered with another Dr`s Surgery.

The difficulty I have always faced is trying to explain to new doctors and nurses etc about this condition. Very rarely you will come across someone with any knowledge or understanding of this condition and those who have no understanding prefer to turn the other cheek and live in ignorance rather than educate themselves.

This applied even when I was in hospital after each operation. It was the norm to be told by nursing staff that I knew more about my own condition and the care I needed than they did.

I was, and am seen as a problem and a very big one at that.

This was once again the case when I registered as a new patient in my new area.

I was once again dreading the whole prospect of returning to hospital as an inpatient to face the laser and by then I was in a very deep dark place within myself.

The hard part was accepting I needed help but I had no idea where to turn or who to turn to. No-one understood, the isolation was unbearable and I had no-one I could confide in. I hated myself for feeling so weak and so beaten with a lack of ability to cope by myself. last occasion when I had laser surgery things had become so difficult.

It was at this point I turned to the little green card I had been given on the day of my diagnosis of the VIN. I had pushed it to the back of a drawer some time ago.

I went for around a week, picking up the phone in an effort to ring the woman named on the little green card, but I couldn’t bring myself to make the call. I finally plucked up the courage to send an email to VACO instead of calling. I had a response within a matter of days and I felt so shocked that someone actually wanted to hear all about me, and the misery I had become a victim of.

I was invited to join the members of the group, Carol introduced me to the ladies by way of an email to the group. I began to receive emails from women that lived all over the world, all suffering the same, similar and even much much worse vulval problems than myself.

Eventually Carol called me when she felt sure that I had gained enough confidence and trust in her, to a point where I could actually talk to her on the phone.

I think I cried my way through that entire call, purely because I was finally speaking to someone that spoke my language.

She understood everything I was going through physically and emotionally.

I wondered why it had taken me so long to contact VACO. They gave me hope and courage once again and they made me feel as though I had found a place where I felt accepted and equal.

I returned to hospital and had my surgery, but things within the hospital had become far worse. Nurses were stretched beyond their limits, this was being taken out on the patients and I could no longer cope with the harsh treatment and unacceptable levels of patient care.

I came home to face being treated less than human by Dr`s receptionists.

I couldn’t get pain relief when needed, I couldn’t see a Dr when I needed, I was told that I didn’t need any district nurse after care. When I had a period but couldn’t wear any sanitation due to the burns on my vulva and the pill I had requested to prevent the bleeding was prescribed too late, I was refused a home visit and had to go to the surgery. I was in no fit state to sit in a public setting in full view of other patients and asked for a private waiting area, I was offered a public toilet to wait in.

The constant battles just to be allowed the very basics took their toll. Eventually, after complaints and uncontrollable tears which led me to feel that I was about to break into a million pieces, it was recognised that I needed some care and the nurses attended, I was given pain relief and I was able to see a doctor.

In December 2005, I decided to seek a second opinion. I carried out research as best I could and when I found a consultant that I felt was excellent in this field of medicine, I requested that my GP make a referral under the recognition for patient choice.

I needed to know where my life was leading and I also needed medical staff that I could be comfortable with and have confidence in.

I met with the consultant in January 2006. We talked at length and I was informed of the success rates on the prevention of VIN recurring in the patients who have undergone total vulvectomy and reconstructive surgery.

At this time I learned the difference between the types of vulvectomy and was assured that I would not need a radical vulvectomy as I had previously been told by consultant number 1. The radical vulvectomy is when you have the lymph nodes removed from your groin. This did not apply to me.

I was booked to have the total vulvectomy and was admitted in August 2006.

My inner labia’s were removed and I was reconstructed from areas on my buttocks.

It was unfortunate for me that this was not as successful as hoped. Only 5 months after this surgery I was informed that the new skin was fine, however, I was extensively covered in VIN once again on the remaining areas.

I was admitted once more in March 2007 for another vulvectomy procedure only 3 weeks after my wedding.

I am currently battling with myself over the self-pity, anger, depression, anxiety and every emotion you can possibly imagine.

I have exhausted every avenue to date in my search for emotional support from the paid professionals.

They only thing that stands between me and the relevant support networks is the grade of cancer.

I will battle for the rest of my life to prevent invasive cancer.

I will require the same treatments and go through similar emotions to those ladies who are unfortunately devastated when diagnosed with invasive cancer but the only support I’m eligible for is the support that those very ladies I mention are freely willing to give.

I will never be free from this demon and that is probably the only certainty I have in relation to this condition, but, Its very early days since this last operation, I’m not feeling as strong and positive as Id like to, but I have my husband and my daughters. I have my 35^th Birthday just around the corner and I plan to make quite a number of changes this year.

I’m taking back my life and I’m taking back the control.

The only thing I won’t be changing, but will be improving, is my will to keep on fighting in the struggle against VIN and the quality of life we lead as a family.

I want my cup back to being half full and I can make certain it never gets half empty.

If nothing else, at least I can control the way VIN controls me.

AND

I had my first normal smear result in February this year.

Now that’s an achievement!!!

Dawn