Hedvig’s story

Vulvodynia is an incredibly painful condition that causes great suffering. Like many persistent pain problems, it is poorly understood in society and often untreated.

A recent article in the Guardian written by Lauren O’Neill highlighted the issue (read here). As a clinician who sees women with vulvodynia, I was pleased to see the coverage in the media, raising awareness. Now we need people to know that there are ways forward.

For 16% of women, using a tampon or even sitting down can be agony – and sex is impossible. Why do so few doctors know how to diagnose and treat it?

The understanding of pain has moved on significantly over the past 5 years. We can use this knowledge practically in the design and creation of bespoke treatment and therapy programmes.

For example, the Pain Coach approach embraces the science of pain and strengths-based coaching, drawing them together to focus on the person and how they want their life to be.

Hedvig came to see me because of the way that vulvodynia was affecting her life. Here is her story, in her own words:

I’ve been suffering from vulvodyina, the almost constant burning and/or knife sharp pain in the vulva, for as long as I can remember. As the case with many conditions that only affects women, very little is known about vulvodynia and even though more than 10% if all women suffer from it, most people still haven’t heard of it. I have fought to get medical help since my early teens and it wasn’t until I came to England for university that I finally got in contact with doctors that took me and this condition seriously.

After 5 years of intense (yet not effective) treatment in England I was finally offered to have the surgery where painful tissue in the vulva is removed. This is considered effective however is the very ‘last resort’ and not many women decide not to go through with it. I had been reading stories online of women that had gotten completely cured thanks to this surgery and could have pain free intercourse only two months post op. Unfortunately, my healing process came to be MUCH longer than that.

Even though the damaged tissue was removed I could still feel pain and I was constantly worried that something had gone  wrong during the operation. Prior to the surgery my pain was mostly upon touch, but now the pain was constant and I could barely walk or sit. Weeks and even months went by and the pain remained. My surgeon had confirmed that the wound had healed beautifully and there should be no reason for me to be in such pain. I was in complete despair.

In common for all chronic pain conditions, I believe, is the long term effect it has on your mental health. After countless of efforts to get help and after numbers of romantic relationships to end due to my inability to have pleasurable intercourse – I was close to just giving up. Having chronic pain in your most private body part is nothing you feel comfortable talking about freely – leaving your feeling isolated and hopeless.

My first appointment with Richmond was unforgettable. I had been recommended Richmond by my surgeon and I had no expectations as I thought this would be just another physiotherapist, using the same treatment method that I’ve tried millions of times already. However, I can honestly say that I left that first appointment feeling hopeful for the first time in years. Richmond is an amazing coach and such an inspirational speaker! In just a few sessions he completely changed the way I look at and understands pain. His approach is very different from all other physiotherapists I’ve ever met – it was so refreshing and turned out to be the right thing for me. Instead of just focusing on the painful area, Richmond focuses on the whole person and so teaches you to understand your pain; why you feel it, what’s triggering it and how you easily can move your focus from it. He gave me easy exercises to do daily and thought me visualisation and breathing techniques which has changed my everyday life.

Even though I’m almost completely pain free today, I do still have bad days where things feels worse. However, something I’ve really learned through my sessions with Richmond is to not go into the state of panic and let all those catastrophic thoughts take over your life. Pain is constantly changing and there is no reason to believe that it will get worse just because you’re having a bad day.

I wish there were more physios like Richmond out there. Vulvodyina is a hell to live with and I wish that all women suffering  from it could get as amazing support and treatment as I finally got.