How old were you when your symptoms first started?
Do you have a hunch as to why your vulvodynia symptoms began?
First time it began right after being on birth control pills for the first time. Second time it was due to cryotherapy.
How were you diagnosed with vulvodynia?
What activities, do you find, are helping you heal?
For the unprovoked burning pain: soaking in aveeno oatmeal baths, probiotics locally inserted, relaxing, doing fun things and trying to forget about it. For the sharp pain at entrance: avoid penetration and dilators.
Who are you seeing that is helping you heal?
OBGYN and pelvic floor therapist
How are your relationships impacted by your condition?
It has been quite hard! I would say it’s mostly due to the unprovoked burning sensation that will come and go. It will sometimes completely ruin my mood and make me spend numerous hours on google trying to find an answer. In general, my mood has been so affected by this thing – e.g. there are periods where I cry a lot and think that this condition has ruined my life. Often I have found myself thinking that it will just be a matter of time before my boyfriend can’t cope with it anymore, even though he often stresses that he CAN live without penetrative sex, because it’s me he wants. For him, my mood swings and negative thoughts are the toughest part.
Is there any message you would like to share with others with vulvodynia?
- There are many men out there who want to be with you despite this condition – remember that
- Don’t isolate yourself, but try to do the things you like
- Keep caring for yourself (e.g. work out, dress nicely and so on) – this condition challenges your feelings of being feminine and sexy, but you still are!
- Think of all the women that suffer along with you – we are a community of strong women
- Use humour
- Don’t give up hope
- It’s not the end of the world (even though it feels like sometimes)
I first began noticing pain at the entrance of my vagina when I was 19 years old. It was right after starting on birth control pills for the first time. Before that I had sex without any pain. I went to several doctors before I got the diagnosis. I tried a few things (lidocaine, antidepressant) but felt that there were not many options available. I ended up getting botox injections. A few months after the injections I fell in love with a man. We tried sex – and it was possible! I was still a bit sore so I couldn’t have sex for hours – but I could! I felt so relieved. I have always thought that it was the botox injections that made the difference, but I have started to question if that was the case or if it was “just” due to this new romance.
Some years later I met my current boyfriend. Sex was still good. Half a year in I began to have this burning/irritating sensation a couple of days each month. I was sure it was a yeast infection, so I took Diflucan. It kept coming back. In my mind I did not think about vulvodynia for a second – I thought of myself as fully recovered from that. I went to the doctor who found genital warts and offered to treat them with cryotherapy – without any information on side effects. After a few treatments I was sore all over and couldn’t have sex anymore due to pain.
I was in my – to this day – biggest personal crisis: Not again! And now with this unpleasant burning sensation on and off (10-15 days a month) on top of not being able to have sex. I was so depressed. I searched the internet like crazy. I went to several doctors (traditional and alternative) and spent a lot of money. I was so obsessed with finding the root cause that I almost became my own doctor.
Today I can see that this mission – for me at least – is impossible. I am not a doctor and the trying to combine different pieces together made me a bit crazy. I took on too much responsibility. For me this is still an ongoing dilemma: How much should I self study this diagnosis, and how much should I just let it be up to doctors/faith? Everywhere I read about how vulvodynia patients are encouraged to find a doctor that wants to seek the root cause, but the doctors I have met, have not been able to do so, or haven’t shown that much interest in trying to do so (possibly due to lack of knowledge in this field). Instead they have offered me many different treatments, hoping one would give me relief.
For me this is still an ongoing dilemma: How much should I self study this diagnosis, and how much should I just let it be up to doctors/faith?
Today – 4 years later – my situation has not improved. I have seen many doctors, tried different things and nothing has ever really made a difference. The best periods is actually when I’m on holiday. Or when I had a concussion and worried about the headache instead. This make me wonder if – in my case – the mind plays a bigger role than I had thought so far. Sometimes I feel like I carry this huge shadow of sorrow with me – other times I feel happy that I’ve found this incredible man who wants to live with me despite all this. And then I try to enjoy the good days and carry on with all my activities, including partying on weekends, working out, and having fun. I still hope to find some relief one day, but I’m no longer keeping my hopes up that this will all be totally over one day.