personalstories

Personal Stories

Emma CTD (page 3)

Last April (2000), my vulvodynia had become the worst it ever was. The morning I was to march in my graduation parade I was in so much pain that I could barely walk. In desperation I turned up at student health. I told the nurse that I was in so much pain from vulvodynia and I just needed something so that I could walk in the graduation parade. She had never heard of vulvodynia. I started explaining to her what is and could not go on and broke down in tears. I was just so angry that no one could help me. She ran off and got another doctor, and again I had to try and explain to someone what was wrong. No one understood. No one could help me. I ended up leaving and used an anaesthetic gel to numb the pain.

I continued to have daily pain which wasn’t helped by the fact that I had just started a new job and was sitting all day. Some days I could not concentrate on my work and would just stare at the computer screen with tears of pain rolling down my face.   I tried to hide each grimace in case someone asked me what was wrong, because what would I tell them? It is the silent suffering that is so painful.   I was desperate to find a cure. In the midst of this my 2 year relationship ended. In some ways not having to deal with vulvodynia in a relationship made dealing with vulvodynia much easier. I wasn’t burdening anyone else with my pain and the associated guilt I felt. However the most agonising part of this break-up was feeling that he had broken up with me because of my health. I could not pretend that it was not an issue and I feared that any man that became close to me would leave me too when he realised what vulvodynia meant. I felt broken, alone and vulnerable.

This was when I came across the anti-candida diet. For the first time I had found an explanation that made sense for my condition. I did extensive research and generally got organised to begin this diet... I immediately began to feel better. My headaches disappeared, my constant diorea/constipation disappeared, I had so much more energy… the list goes on!   And, most amazingly, I also enjoyed pain-free sex for the first time in my life..   I was aware that the diet would not affect the vaginismus, and have worked hard myself to overcome this. I am currently have an amazing partner who has helped me in this. He has been so gentle and understanding, whilst at the same time not allowing me to get into what I call my ‘spiral’ – let me explain. In the past, at the thought of intercourse I would tense up, not allowing penetration regardless of how much I wanted it. As soon as I was tense, what I term the ‘spiral’ would begin – spiralling downwards as I lost control of how I felt. Occasionally when one little thing would go wrong during sex, this ‘spiral’ would begin again. My partner has been so wonderful in helping me deal with this, specifically by not letting me let it become an issue. He would not tolerate the ‘spiral’ and I have learnt to control it, hence I have gained control of the vaginismus. It is months since I had any pain with sex. At first I kept worrying that one day it would come back, but I know it is not good to think of this. I have to believe that I am in charge of the pain, rather than a victim of it. I know I have the power to stop it.

I do believe that my vulval pain is stress and unhappiness related. This was something I used to vehemently deny, and I used to feel that anyone that suggested this was denying my pain. I now have a far more holistic view of health. I know that if I am not well, feeling tired, stressed, my first sub-conscious reaction is to tense my pelvic floor muscles. This is followed by vulval pain and irritation. Memorable examples of this have been when I have been feeling 100% fine and I have had an argument with my someine and soon the vulva pain starts.

So how do I control my vulval pain now? Most of all I surround myself with people I love and make me happy. I don’t let things I can’t control stress me. I set time aside for myself. I do things that make me happy. I am positive about my health and have a firm belief that I am the person in charge of it. I eat well, I exercise. I relax. I do yoga.   On a more practical note, I try to keep my diet grain-free (no rice, oats, wheat, rye etc), as sugar-free as possible (I eat fruit in moderation , though not if my vagina is irritated) and I try and eat as few additives and chemicals as possible. I take a daily supplement of acidophilus, a multivitamin, nystatin powder (1/8 teaspoon 3 times a day) and cod liver oil (1 T per day). If my vagina is irritated or I feel a bout of thrush coming on, I use a boric acid capsule (my wonder pill!!!), or I insert nystatin powder. To sooth the area during the day I use Candida Gel by ‘Living Nature’ (contains flax gel, manuka oil and vitamin E).

…so that is my story, far longer than originally anticipated, but I hope it gives at least someone out there hope that one day they too will find the remedy that is right for them.