Susan’s story – the pain you get when you don’t have a pain

I have read that Vulvodynia is referred to as the “exquisite pain.” That’s as close to perfect as you can get. I also read it can be referred to as “the ring of fire.”

I was to learn that these statements are so true. I was a healthy woman going through the onset of menopause and for this I had been put on a mild course of HRT. So one day 7 years ago after returning from a walk down the creek, I felt an itch, a familiar Itch, the itch I would usually get after a course of antibiotics. The Thrush itch, but I was not on antibiotics. This was the only time I had the itch out of the blue. How weird, I thought to myself. If only I knew what lay ahead for me.

I had been a patient of a clinic in my home town – for ever it seemed. The first female GP I saw about the problem advised me that on inspection, my vulva and rectum looked like paper lace. My vagina was full of tiny splits, she called ‘paper cuts.’ She suggested I use a strong thrush treatment, even though no thrush was evident. I was back two days later In absolute agony, seeing another female GP. She advised me that 99% of problems in the vagina are sexually transmitted and also told me “to change my ways!”

What the hell! What was she thinking of me? I was 52 yrs old married for 32yrs three grown adult children, and no vagina problems ever before.

It was not until I got into my car that the focus shifted in my mind to my husband – had he given me this god awful pain? Did I have a sexually transmitted disease? It had to be the case. My marriage was flashing past – a kaleidoscope of pain, as I sat in my car unable to move. I wanted a Gun! Oh, the shame, the shame of it all. Who was I going to tell I had an STD. What would I tell my grown adult children – your father gave me an STD? Yes, he was a dead man walking.

The next few days were a blur as I tried to keep a lid on my emotions. Do I accuse my husband? Do I throw him out? I want a divorce? Yes, I want a divorce. How will I explain my divorce? How and when did this happen? The pain below was so intense. I could not allow it to get in to my head as well, for I would surely sink.

My pain was fire that burned within, perfect exquisite pain. I turned to my chemist he suggested a bath of Pine tar lotion. It has been 7 years and I have never sat in that bath again, the memory of that bath lingers long in my mind. It was agony.
Over the next week I saw six GP’s in 9 days – every time I was sent to the chemist to get more thrush treatments and the pain became more intense. When all seemed lost my GP of twenty years returned from holidays and I made an appointment with him. I will never know what he thought of me then – I was totally broken, so fragile, lost, so full of shame. He listened and then suggested I see a gynaecologist – another male. I did not care who he was – anyone would do. Just diagnose the STD and quick.

I took my husband to this appointment. I still had not raised the issue that would end my marriage. All he knew was he thought I was dying.

The gynaecologist advised that his internal would “sting a little.” Why? He sprayed my vagina full of vinegar – testing for the wart virus! I was in hell again. I wriggled and screamed in pain, my vagina was scraped, there was no caution taken in this – it was ruthless. Afterwards I could not sit, I stood huddled in the corner of his consultation rooms as he advised he had taken appropriate swabs for STD’s. Then a jaw-dropping bomb – he asked me to consider the fact “that this pain was all in my mind!” He did not seem to notice that I was not sitting, I was crying in absolute pain. I wanted to knock him out there and then.

I was to wait many days for the swabs, then the results were in – no STD’s. I had what he called as “a pain when you get when you don’t have a pain.” There was nothing he could do for me.

At home the lid was off the can of worms. The time had come for the conversation with my husband – actually there was No conversation, I just screamed bloody murder at him. I didn’t care what that gynaecologist had said – my husband had done did this to me. He pleaded his innocence, but I knew this pain was real – he had to be the one.

We stopped sleeping in the same bed. I looked at him as someone I did not know any more. We were on the verge of breaking up. How could I ever have sex with this man? No, how was I ever going to have sex again? My sex life was over. We were over. We did not know it at the time but a GP and a gynaecologist were going to end our marriage. We were just going through the motions.

Then my youngest son bought me a second hand laptop so I could learn what was happening to my body. He set the laptop up for me and I typed in one word – vulvodynia.

The world of vulvar/vaginal pain opened up to me. There was a support group online in Australia, I joined and wrote my story, and then found out I was not alone anymore. There were many women, young and old who related to my story. There are so many different vulvar pains and I ended up joining support groups all around the world. There was a wealth of information for me. No one else but the women in these groups wanted to hear of the “sick vagina.”

People I know are embarrassed by my honesty. You do not talk about a burning vagina. Hell you don’t talk about your sex life or lack of it. How do you explain? You say, “I have shingles in the vagina,” but the looks all came back the same – it had to be an STD. So I stopped talking. To the rest of the world I was becoming reclusive but in fact I was a free spirited woman with No Knickers.

I asked my GP to refer me to a vulva specialist In Melbourne – the waiting list was 10 months. Better than nothing, I thought. The appointment was made, I lived and breathed vulvodynia. My research took me to another vulvodynia specialist who visited country Victoria so I made another appointment – that would only take 3 months.

I will tell you what I took from this appointment. Our vaginas are like the great barrier reef, made up of so many species. Anything you put in your vagina is corrosive, including some HRT. He continued on with an internal that bought tears to my eyes – so much loss of dignity with this vulvodynia.

I made up my mind this is my body I know what works for me. I had to start trusting myself. I had to start listening to the pain. I had surrendered my body to doctors and wanted them to fix me. I took all their thrush treatments, I tried all their anti-depressants. In the end my journey to help me heal had to be mine.

My husband and I separated – I had gone through so much and he had too. I needed to go through this on my own, and I did. I withdrew from friends, family. I surrounded myself with my garden and perfect peace, except for my dogs.

I had to learn to emotionally heal, forgive the ignorance of many doctors, and then I had to separate myself from every other woman that I was corresponding with because we are all so different with our pain. I did not need more confusion, more experiments, more advice. I stopped being a member of so many vulvodynia support groups, I selected one in Australia and remained a member of that.

During those years my periods stopped with menopause and there seemed to some relief with no periods. I came off HRT, I went and bought lots of hippy skirts, I threw away my under wear, I slept naked in all cotton, I bought all natural products right down to the toilet paper. I washed my clothes in hypo-allergenic washing powder, I used sensitive soap in the shower, hypo-allergenic shampoo and conditioner. I washed my vulva in water, nothing but water, no salt baths, no bubble baths. I experimented with diet but could not identify any triggers there. I was living the life of a healthy hippy only I was in Victoria. It took years for the paper cuts to heal, my pap smears as always show nothing sinister happening in regards to cancer, and NO STD’s.

Slowly I began to heal, the burning was going away, ever so slowly. I could sit in a chair. I could travel in the car. I found bamboo underwear that worked for me, although requiring regular changes in the summer. No more knickerless days.

Today, I am coming out the other side of menopause and I believe my hormones grinding to a slow halt has helped me enormously. Now these days, if I can relax myself, I have a sex life.

I DID get back with my husband. The mistrust in our marriage, from him as well as me, had ended it for over a year. Then, with my knowledge of what was happening to me, we were able to open up some honest dialogue and get together again. We will have been married 39 years on Feb 14. Yep I know you get less for murder!

I went to hell and back and I survived. These days the word “vulvodynia” is known in most medical circles and women through the internet are learning and finding support. They are also finding out they are not alone.