5 Things I’ve Learned Since My Diagnosis of Vulvodynia

After being diagnosed with vulvodynia I discovered that there were limited stories that were positive or helpful on the internet. The advice for women with the condition was scant and did not address the true nature of the condition – both it’s variability and the impact on those dealing with this on a daily basis. I decided to write a letter to those that were newly diagnosed that would hopefully address, with some humor and positivity, the reality of treatment and how determined you will need to be.

1. It is more common than you think.

“Vulvodynia is persistent, unexplained pain in the vulva (the skin surrounding the entrance to the vagina).”

The symptoms vary from itching, burning to rawness and irritation in the vulval region. There are different subsets and every woman experiences different degrees of pain and discomfort. The origin and cause of this condition is multifactorial and hugely misunderstood. A lack of research funding has left vulvodynia as an underrepresented and underreported illness. However, it is much more common than you think. It is estimated that approximately 15 percent of women will struggle with chronic vulvar pain at some point in their lives.

Statistics are probably much higher as it is so often misdiagnosed and women can go many years without a diagnosis. Once I was diagnosed I began to realize that it was the condition that was always a few degrees of separation from the woman I spoke to; it was a condition that the friend of friend or an aunt or grandmother had experienced and struggled with – but their struggle had largely remained silent.

2. Vulvas are not a topic of polite conversation.

My diagnosis, like many woman with this condition, has not been lineal and the symptoms have changed throughout my year and half into this journey. Like it is for many Mighty contributors, the curse of an invisible illness is that it can be difficult to explain and hard to persuade (on some occasions) that you are actually ill or struggling. This is especially difficult when your condition affects your genitals.

Vulvas do not seem to be a topic of polite conversation. It has been difficult to express that my pain and discomfort affects a deeply private part of myself. However, this should not affect your ability to share in your experience and voice your distress. Sadly there have been times when my condition has been looked on with derision, great misunderstanding and flippancy. However, I would urge any newly diagnosed woman to speak out and not to be afraid or embarrassed to speak to friends, colleagues and importantly to speak openly to your partner and your doctors. Just because this condition affects your vulva, there is no reason you should not seek the same support that other people with chronic illnesses do.

3. Persistence is essential in finding treatment.

Though out my vulvodynia journey I have seen four gynecologists, a vulvologist, a specialist physiotherapist, a clinical psychologist, a pain specialist, a vulval dermatologist, and two standard dermatologists, an acupuncturist, a Chinese herbalist, a nutritionist and numerous general practitioners.

In the early stages of diagnosis there were some moments of sheer hilarity and intense cruelty. I have learnt that vulvodynia is not always studied by health practitioners and that its impact on everyday life is often misunderstood. It has helped to be well informed prior to appointments and it is important to be persistent in finding a team of people who are willing to help on what can be a complicated and long journey back to health.

I am so grateful to the sensitivity and care shown by my physical therapist when discussing great intimate issues whilst sitting on a table with my legs spread ready for another examination. I am grateful for my male acupuncturist allowing me to discuss intimate issues prior to each session and listening with great aplomb; never fazed by discussing a very female problem. Lastly, I am grateful to the pain specialist for underlining that with each failed treatment we would try something new.

Keep fighting to find people who will help, they are out there.

4. Chronic illness can be a lonely place.

The symptoms of vulvodynia, in my case, have changed and fluctuated. This has greatly confused me and those looking into my medical care. Vulvodynia covers such a wide range of symptoms with differing causes (in my case neuropathic) that can range from irritating on a daily basis to completely debilitating. I’ve struggled with burning to intractable itching, while I try to retain a sense of normality each day. However, it is not the vulvodynia that has been the greatest challenge.

As the fear of pain and discomfort becomes mixed and diluted with the side effects from drug therapy, you begin to step back from your life. Spending time with friends becomes harder as you grasp at the version of yourself that existed before this condition. It becomes a lonely place. Your mind has been hijacked by the experience and fear of pain. It can be difficult to remain present in moments in your life and I have felt myself slowly slip into depression. However, seeking support from family, some empathetic friends and a good counsellor has been essential. Knowing there are positive stories (there are some) and focusing on the words of advice from some caring health practitioners has made a difference. It is possible to see a way forward and you do not have to take that journey alone.

The internet can be a great friend and your greatest foe.

Whilst at my lowest and loneliness I have stumbled across unhelpful advice from many medical advisors and health websites that publish depressing statistics and scant treatment advice. These are made emphatically worse by the stories from woman online that seem to speak of decades of pain. At this point vulvodynia has seemed like an insurmountable challenge that would take over my life. However, it has been possible to find indispensable advice and a multitude of treatment options that have allowed me to be better informed and able to seek out possible alternative treatment options. It is possible to use the internet as a tool in the fight against vulvodynia and to find the knowledge you need to be your own advocate in your healthcare. Not every story is negative and this can be strengthened in the advice from some specialist experts that vulvodynia will not be lifelong.

5. Wearing pants is overrated.

After my second diagnosis of dysesthetic vulvodynia and having used powerful steroid ointment for a nonexistent skin condition that was misdiagnosed, my nerves were so irritated it was too uncomfortable to bear underwear. I spent a whole summer in loose trousers and long skirts without pants. I felt embarrassed at first but I have come to realize that in order to do this dance with vulvodynia, you have to make adjustments that will seem unnatural at first. However, adjustments may be temporary and your pain and discomfort will wax and wane.

If something as simple as not wearing underwear will save you a degree of discomfort, then so be it. Wearing pants is overrated anyway and allowing yourself to smile about the ridiculous nature of vulvodynia will sustain you in the darkest of moments. I am lucky that I have partner who makes me laugh and allows me to cry and smile whilst on this journey. I am still learning how to deal with this condition, which for me involves being a human gum ball machine and trying out a multitude of drug therapies to try and correct the nerve damage.

I am ever hopeful that eventually I can be comfortable every day and overcome this condition, but I can see that this journey will be winding and long. I won’t give up, and that is the greatest piece of advice I can give to any struggling with this condition: Do not give up.

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Gettyimage by: Dreya Novak