GUEST POST: My experience with vulval pain, by Amanda

Hi everyone, my name is Amanda and I’m 20 years old. I previously believed I had vaginismus, but after having a pelvic exam I was actually diagnosed with pudendal neuralgia and vulvodynia. Therefore, I wanted to share with you my experience and how I got my diagnosis.

I started experiencing dyspareunia –pain when sexual intercourse is attempted or is occurring- during my first relationship at 15. When I attempted to have intercourse it often wouldn’t go in and it felt like there was a wall in my vagina which, if touched, caused a sharp pain. Unfortunately, the relationship I was in was very unhealthy. I was already struggling with my mental health at the time due being bullied and my partner regularly guilt-tripped me into having sex, making me adopt the mindset that what I wanted or enjoyed didn’t really matter.

It was not until my second relationship, at 18, that I started to realise that the pain I felt during sex wasn’t normal. However, although this relationship was much healthier and my pain was acknowledged, my partner and I still tried to have intercourse. Sometimes I would be able to put up with the pain or it would become less noticeable after a while, other times it was impossible. Even though my partner always stopped if I said to, I felt like intercourse was the end goal and that I had to have sex if I could because I believed that was how relationships worked. I felt sad, ashamed and like I was in a constant fight with my body. Wanting to have intercourse but being unable to made me become increasingly frustrated with myself and break down every time I talked about my pain with someone or even just stopped to think about it.

At 19, I started looking into why I was experiencing dyspaurenia and came across the condition ‘vaginismus’ on Google. I felt completely identified with the symptoms, as I experienced a recurrent, sharp, stabbing pain within the vagina during intercourse or penetration, but no pain if this wasn’t attempted. I also believed I had vaginismus because of its links with anxiety. I’ve had depression and anxiety since age 12, as well as have suffered emotional abuse throughout my childhood and adolescence, so I thought my pain had to be related to my mental health, my insecurities and the pressure I felt to be perfect. Consequently, I continued to try to have intercourse because I thought I just needed to relax and that the pain would go away when I did.

In November 2019, I decided to make a doctor appointment to get an actual diagnosis. The doctor who did my pelvic exam was very understanding; I described what I believed my diagnosis was, my symptoms and previous medical history. She then explained all of the things she was going to do and tools she was going to use for the examination. To my surprise, she said that I didn’t have vaginismus. Instead I was diagnosed with pudendal neuralgia/provoked vulvodynia. She explained that my nervousness was probably making me tense up more and consequently making the pain worse, but that my pain is caused by my pudendal nerve as pressure in this area is what triggers it. In all honesty, when I heard this I felt relieved, because I thought that since this was a physical problem –as opposed to a psychological one- it would have a straightforward solution. I was then quickly brought down to earth when she explained that there were different treatments available but that none of them were guaranteed to work. I was prescribed a local anaesthetic cream to try but it didn’t work at all, so I went back for a second appointment after reading more about vulvodynia and decided I wanted to try pelvic floor physical therapy. Thus, I’m currently on my local NHS waiting list for this service and hopefully will be able to start soon.

Over the last few months, while I’m waiting for physical therapy, I have been trying to grow more comfortable with myself and my vulva. I’m going to counselling, I bought a vibrator so I can slowly lose the shame I feel around sex, and I’m slowly learning to love my body.  Even though I hope physical therapy will help, I no longer feel like I’m obligated to find a cure so I can have sex. Not long after getting my diagnosis I started seeing someone who refused to have intercourse if it was going to be painful for me. This was the point at which I realised that penetrative sex isn’t a requirement for a successful relationship or sexual pleasure. You can have a great sex life without this. Any romantic relationships I have are not any less complete or important because I have vulvodynia. I don’t need to ‘fix’ my vulva. Our worth is not based on being able to have intercourse and we are not worse partners if we are unable to.

Vulval pain can be a very isolating condition. There is a lot of stigma surrounding female sexual dysfunction and vulval pain conditions, even though many women experience this in their lifetime. Fortunately, there are amazing charities and organisations such as the Vaginismus Network providing resources, support and raising awareness. I’m also happy to have a chat with anyone who has a vulval pain condition or any questions I might be able to answer, so feel free to message me on Instagram: @_mandy__15.

Finally, I want to end this blog post by saying that I’m very grateful I had a doctor who was so understanding and helpful. I know many people search for a diagnosis for years or individuals whose worries have just been ignored by their doctor when they’ve asked for help; so I hope my story be a reminder that there are also doctors and professionals who will help and support you.