VACO

Paget’s Disease of the  Vulva (pre-cancerous)

Laser 2001 Partial Vulvectomy & Clitorectomy 2002/2003

The above is part of the “signature” I use on the Vulva Awareness Group and probably sums up my story in a nutshell.

My name is Sheila and I currently live in S.E. England but am in the process of moving to the Midlands.  I have three amazing children and one amazing grandson.  I have been married for 34 years.  We met when I was 16 and he was 18 and have been each others “one and only” ever since.  The outfall from the diagnosis and surgery, never mind say the fact that life still keeps throwing up the unexpected, has tested our marriage to the limits but I am glad that we managed to struggle through and now have a relationship based on more realistic expectations.

Pagets Disease of the Vulva is very rare and many health professional assume I am talking about Pagets Bone Disease which is a totally different disease.  Although there is now a lot more information on the internet about vulva conditions in general, the information on Pagets is often contradictory and confusing.  I even had one Doctor who was so insistent that I must have Pagets Disease of the Bone that I eventually told him that if that was the case, I had better check with my Consultant as to why he had removed part of my vulva and clitoris!!  I am not sure he was convinced even then.

My symptoms started with soreness, a small area on the left side of the vulva which seemed to be appear occasionally just before my period.  Gradually, over 3-4 years, the soreness became more frequent until eventually it was ever present.  Despite two of my Consultants insisting that I must have had considerable itching, I did not have any at all.  There was more of a stinging sensation.

During the 90’s life was very stressful as my husband was made redundant on three occasions, my two closest friends were diagnosed with terminal cancers and both died during the year 2000.  Not only was there huge sadness at their loss but, selfishly, my support network was blown apart.  I was working within the NHS and, to be honest, felt very embarrassed about the other staff knowing, and discussing, my vulva problems.

In September 2000 I started a new job as a Health Care Assistant in a nearby unit.  I very soon realised that career wise, I had jumped out of the frying pan and into a raging inferno. The second of my two friends also died, with the end coming very suddenly. My blood pressure had been causing concern and shot up alarmingly.  I saw my own GP, who was very irritated as I had made the appointment for one reason i.e. raised BP, and then had the audacity to mention the vulva soreness.

Fortunately, despite this, she referred me to a local Gynaecologists and, having been strongly reassured by both the GP and Gynaecologists that there was nothing remotely malignant about the sore area, I was given steroid cream to use for about eight weeks as it was thought to be a type of eczema.  Initially the area cleared up quite quickly but as soon as I stopped using the cream the soreness reappeared with a vengeance.

I was then referred to a Vulva Clinic in a London hospital.  There were various unnecessary delays but eventually I was booked in for laser treatment to the affected area and told that I would be able to return to work one week later.  I found it very difficult to deal with the Consultant concerned; I felt that his manner was over-bearing, arrogant and any questions I asked were answered with “what on earth do YOU need to know that for”. He even assured me quite categorically that urine did not touch the vulva; which causes most women to snort with derision.  Real life was proving very different to the way these matters are depicted in TV documentaries and magazine stories.

When I later discussed with a Macmillan nurse how much of a failure I felt for letting myself be treated  like this, she commented that the Consultant had probably had years of experience crushing terrified women whereas the whole experience was totally new and unexpected to me.  The Macmillan nurse was very helpful but as I had a pre-cancer and not a cancer, she had limited time with me.  I spoke to my GP at an early stage stating that I would go anywhere else in the country if I could see a different Consultant but she advised me quite firmly that there was nowhere else.

After more delays I eventually had the vulva and a small area of clitoris lasered very deeply and extensively, in July 2001.  The nursing was very good and with the help of strong pain relief it was not as bad as I had expected.  The sister on the ward gave me a sickness certificate for 6 weeks and I hobbled up the ward to tell her that I would only need one week off.  Her response was “I doubt that you will be able to work even after 6 weeks” and then muttered what sounded like “if ever”.

I attended the hospital for a check up in the September and having waited for over two hours, was eventually seen by a different gynecologist.  She said that the area was healing but seemed a little doubtful about one small area.  She told me that the biopsy showed pre-cancerous cells that COULD BE related to Pagets Extra Mammary Disease.  She also said that I should check the area every week and go straight back if a lump appeared.

Initially I was euphoric, I didn’t have cancer,  I hadn’t had to see the arrogant gynecologists which I had been really dreading,  but as the appointment was pretty rushed I hadn’t really taken in all that she had said.   At this stage although very uneasy, I still thought it was pretty much like an “iffy” smear; I would have the laser treatment and then life would continue as before.

About eight weeks after the laser treatment I attempted to go back to work but some of the other staff were very unhelpful, expecting me to do their heavy lifting as well as my own, and I felt completely unable to cope with this both physically or mentally.  I knew that several of my predecessors had complained via official channels to no avail. The area was becoming more and more painful but I put it down to the amount of work I was doing and eventually handed in my notice thinking that I would give the area a good chance to heal by resting and then look for another less stressful job.

Unfortunately a few months earlier my husband had bought a transport company and then found many unexpected problems, mainly financial.  Although when he bought the company I said very definitely that I did not want to be involved in any way, there was no alternative but to start managing the office so that he could take on driving jobs 24/7, along with the other drivers, so that we could hopefully keep ourselves afloat.  After a few years we managed to turn things around but the emotional and physical effects were enormous.

I have not driven for over 30 years, I didn’t know one make of vehicle from another (and cared even less) and have absolutely no sense of direction, so this was really not part of my life plan.  I literally had to bluff my way through each day and hope for the best.    This, along with ever increasing vulva pain, was not the happiest period of our marriage.

My husband had come with me for some of the appointments but I tended to underplay things to the children.  Partly, because my instinct has always been to protect them, but also as self preservation, because I could not cope with their feelings and emotions as well as my own.  I realise with hindsight this was not for the best but I was getting through as best I could but have never felt so alone in my life.  From what I had been told at my post operative check up I thought that the disease could reappear overnight as a full blown cancer, I would have chemo and radiotherapy and then after all kinds of indignities would die anyway.  Not the stuff of heroines but how I truly felt, although I kept an optimistic front for the outside world inside I was terrified.

I was also told at the post lasering check up that I needed to have 6 monthly smears, annual mammograms, a kidney scan and a thyroid scan.  These were all carried out and came back clear.  I was also told I would need regular biopsies to check the area was ok - it is amazing how blasé male doctors can be about biopsies to the vulva area.  When I went to collect one of the forms I noticed it said “Diagnosis Pagets Disease”.  I argued with the receptionist that I did not actually have Pagets Disease just some cells that could be related to it.  Eventually she showed me the letter from the hospital, and that was how I found out that I actually had Pagets Disease.  I suppose it saves questions if you fob patients off with half truths.

In order to have the mammogram I had to attend the local hospital’s breast clinic.  I heard the Consultant in her office next door saying very loudly “What on earth is Pagets Extra Mammary Disease of the vulva”.  She then came in to see me and told me that “I had nothing to worry about” which, unsurprisingly, was not very reassuring. 

Just before Christmas 2001 I was unwell and saw a different GP at the surgery; I told him of my concerns and he asked if I would like to change Consultants; he made one phone call and arranged for me to be seen at a different London Hospital in January 2002.  It was as easy as that. The relief was incredible.  Unfortunately the GP I was actually registered with did not see it this way and did not send the referral letter. This caused yet another unnecessary delay.

I was eventually seen by a very caring professor of dermatology.  I was in so much pain and so stressed by this stage that I could barely speak.  Fortunately I had written out a diary of events and she took down  the details she needed with just an occasional question.  I never in a million years thought I could be reduced to such a state but by this time the area was agonisingly painful (the words of the Gynae Consultant when I saw him) and I was shocked at the way I had been treated by my own GP, the first Consultant and some of my ex work colleagues.