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Personal Stories
Emma CTD (page 2)

For about a year, other than the odd bout of thrush, I was relatively pain-free. I enjoyed being single and not having to share the burden of my health with anyone. Then I met a guy, and was petrified of telling him about my health issues. Before we got too close I sat him down and told him everything. I think a part of me wanted him to run away in horror so I wouldn’t have to share my agony and deal with resulting emotional pain that vulvodynia causes in a relationship. But he didn’t run away in horror and he was very kind and gentle and understanding. For the two years that we were together he was nothing but supportive of me. He accompanied me to many horrific gynae and GP appointments and held my hand when I cried in frustration and from the pain of internal examinations. So continued my quest for a cure…

Dr Adams prescribed me with a tricyclic anti-depressant (10 mg at night) which works as a nerve suppressant, thereby blocking the pain. However one of the side effects is tiredness, and I would be asleep within 10 minutes of taking it and struggled to wake in the morning. It generally made me feel yuck, and after a few stints of it I decided that it was not the answer for me. I didn’t like taking something for a small (although important!) part of my body that affected my whole body. Also, it wasn’t a cure. It was merely hiding the pain.

Another thing I tried was Xylocaine Gel. This is a local anaesthetic gel that temporarily numbs the area. It takes about 10 minutes to work properly I think, so you need to think ahead a little. It also lubricates the area which is good. I used this successfully for a while and it enabled me to have sex. However, although it also dulls the pain, it also dulls the pleasure a little! I would also caution using it as you may have sex when you wouldn’t usually because you are too inflamed and you may risk making the area more sore.

By this stage I had developed an aversion to sex. The thought of anything being inside me made me shudder. I believe as a side effect of the vulvodynia, I developed vaginismus, which is when the pelvic floor muscles tense up and don’t allow anything inside. In hindsight, I can see a vicious circle had developed. I would tense in anticipation of the pain, sex would be more painful because I was tense, the skin would be further irritated and this pain would further reinforce my fear of sex…

Eventually, I didn’t even attempt sex. When I did, it was with guilt, anger and sadness. I would (irrationally) decide that no one would want to be with someone if they couldn’t have sex. Therefore damn it I would have sex regardless of the pain. A stupid attitude that invariably ended with me in tears and my partner tormented with the guilt of causing me pain. I was very depressed. Everywhere I was surrounded by people joking about sex, movies with beautiful women and handsome men bonking multiple times, magazines advising me “how to have sex in 100 different positions”… when all I wanted was to have sex that didn’t hurt.

Early 1999 I was diagnosed with glandular fever and had been taking repetitive doses of antibiotics. My vulvodynia was awful. I was close to breaking point when a letter arrived from the Wellington Sexual Health Clinic asking me if I would like to participate in a support group for women with vestibulitis. I accepted without hesitation as at that stage it had got very bad, not so much in a physical sense, but emotionally I was very low and finding it very hard to cope. Before the first meeting I was nervous. I was sure that there would be lots of old women there and I would feel embarrassed. I was so relieved to walk in to see 6 other women just like me. All of us attractive, intelligent, vibrant women, everyone of us ’normal’. Suddenly I had found a group of people who understood exactly how I felt! I spent the first few sessions in tears, dealing with a whole lot of emotions that had been laying just under the surface. Afterwards I would walk to my car and cry and cry and cry before I was calm enough to drive. There were a lot of tears at the first few sessions - I think we all just had this amazing sense of relief of actually meeting others that could really understand what we were going through. A counsellor and a nurse facilitated the course of 8 sessions and when these ended we decided to continue to meet on an informal basis monthly. These meetings have continued and 2 ½ years later this group of strangers (and a few new ones added!) have become some of my closest friends and are a wonderful support network. We share treatment ideas and it is so reassuring to know that there are people that understand how I feel.

Soon after the support group started I had my colposcopy and biopsy for my abnormal smears. I was terrified of this. Since developing the vaginismus on top of the vestibulitis, internal examinations had become torturous. I would lie back, doing my very best to relax and ignore the searing pain. I always walked out in tears. The biopsy showed a CIN level 3, the stage before cancer. I had a LEETZ treatment done under general anaesthetic immediately. At the time I was very busy with my honours year at university and barely took a day off after the operation. Three weeks later I handed in a big project and the crying started as I walked back from university. I continued crying for 3 days solid as I felt life was not worth living and wondered whether I was really going crazy. I realise now that it was probably delayed trauma from the surgery, and that had released a whole host of emotional pain associated with vulvodynia. I learnt from that experience that when I feel down, I need to take time out to deal with what is happening in my life. It is too easy to bottle emotions away, store them for when I have the time or energy to deal with them. That is the easy option at the time, but there is only so much that can be stored away before there is a breaking point.

...click here to read the rest of Emma's story...