Vulvodynia is constant pain. «Imagine you can’t sit on your butt at work»

Vulvodynia is a disease that affects every ninth woman. It concerns intimate places, and in Poland it is still a taboo subject. Women often suffer alone. They are often misdiagnosed and treated for years, incl. for mycosis. Meanwhile, it’s a neurological disease. It requires the help of a psychologist, dietitian and physiotherapist. At least that is the case in Great Britain, and in Poland? Ania tells about her story. “There are times when you really wonder if you should go to a plastic surgeon and have everything cut out for yourself,” he says.

1. At first, I had no idea what was wrong with me. I thought, and the doctors thought it was a fungus or some kind of bacteria, because it’s still only pain, pain and pain – says Ania, who was diagnosed with the disease over 10 years ago
2. It’s as if someone had suddenly stuck a knife into your vagina. While standing in the store, you look at the shelf and suddenly “boom”, you get hit with a knife – he adds
3. In Poland, she went from doctor to doctor. She finally gave up. In the UK, it only took one visit to a local sexual health clinic to make a correct diagnosis
4. It was taken care of by: a physiotherapist, dietitian and psychologist
5. More information can be found on the Onet homepage

Vulvodynia – an embarrassing disease?

Klaudia Torchała, Medonet: Do you feel embarrassed when you talk about your illness?

Anna Kaspersky: Shame?! No, not absolutely.

I am asking this because it is probably an embarrassing disease for women. In Poland, few women admit that they suffer from it or simply do not know it. Secondly – vulvodynia concerns the vulva, and the Old Polish vulva is a shame. Such a coincidence?

I didn’t make it up …

Is this disease still taboo in Poland?

I haven’t lived in Poland for 20 years, so maybe that’s why it’s easier for me. I am used to the fact that if a person suffers from something, regardless of whether it is the large intestine, testicles or vulva, it must be treated and not be ashamed to talk about it. After all, these are also parts of our body.

The rest of the interview is available in the video.

From office to office

It can be said that you have experienced a diagnostic odyssey in Poland. You wandered from office to office and nothing? How it’s possible?

At first, I had no idea what was wrong with me. I thought, and the doctors thought it was fungus or some kind of bacteria, because it’s all pain, pain and pain. So when the medication did not help, it was concluded that I must go on vacation. Rest mentally, because maybe that’s what it is all about. It was a tragedy. No doctor, no gynecologist in Poland has figured out what this disease is. Nobody did any tests for me. It got better for a while, then the itch again and the pain came back.

When did your illness start exactly? Do you remember any turning point? First symptoms?

It’s hard to say because infections happen to every girl or woman. It was the same with me. The method of eliminating certain diseases began. But when your pain stops for a moment, you come back to square one. You start to wonder what it is and whether there is anything wrong with you at all. You find another doctor and you are at the beginning of this path again. As for the diagnosis itself, it was when I was 28. It was 2008. Before that, it was a vicious cycle.

Interdisciplinary treatment

One visit to a clinic in Great Britain was enough to find out what is wrong with you?

I couldn’t believe it myself. I was already working in England and when I stopped seeing the point of visiting more doctors in Poland, I went to the local sexual health clinic. This is a place where everyone can come without registration, receive support, contraception, and have tests.

Was it a shock, was it? The medical interview itself allowed me to make a diagnosis right away? It’s that simple?

Yes. I told my symptoms and they examined me. They began to touch the external organs with such a stick. I remember well. It was enough to make a preliminary diagnosis. After that, of course, there were many more laboratory tests to eliminate other diseases. Nothing is wrong with the internal organs. And a matter-of-fact diagnosis was made – vulvodynia.

Did you know anything about this disease? Did you feel relief or fear? The name itself sounds enigmatic, and yet it is a combination of two words literally meaning vulva (Latin vulva) and pain (Greek odyne) …

I felt relief. On the same day, I translated all the materials from English into Polish and started my blog about this disease. I probably visited all possible forums where women discussed their ailments and recommended that they read about vulvodynia.

It would seem that it is a gynecological disease, because it affects intimate places, but it is a neurological disease. Is the treatment complicated?

Vulvodynia is treated with an antidepressant drug because the disease itself is actually a neurological disease. Under the influence of the drug, the nerve endings of the vulva calm down, and that’s it. I took the drug for eight months. It was a first-generation drug and had many side effects.

What kind?

I couldn’t talk for too long because my mouth was dry right away. I was still walking with water. I only gave short sentences because I was literally sticking to myself. It was also very difficult for me to get up in the morning to work, because the drug caused weakness, stupor and drowsiness.

What specialty was the doctor in charge of you?

I was under the care of a psychologist, physiotherapist and dietitian.

Why is a dietitian involved in all of this? Are there any proven dishes or products that relieve pain in intimate areas?

The idea is to limit foods that are rich in oxalate (oxalate diets), that are crystal-shaped under the microscope, i.e. sharp at the ends. The assumption is that everything you eat is excreted from, among other things, in urine. And oxalates can excite the disease, activate nerve endings, irritate. It was a strange diet, because usually when we think about a diet, we associate it with healthy eating, and here it was about the elimination of certain products that are supposed to be healthy. I had to set aside the green peppers, but not the red ones. I couldn’t drink my tea, which was a sacrifice for me. For example, I couldn’t eat beetroot, spinach, sorrel, rhubarb, peanuts. There was a long list. It lasted for three months, but honestly, I gave up because in my case I didn’t feel any huge improvement. I don’t think I was among those 15 percent. women who are really helped by this diet.

And physiotherapy in this disease, what is or was it based on? Are there any special pain relief exercises?

Pain in an intimate place causes the muscles to contract, which causes the pelvic muscles to tighten. It’s hard for you to relax. I had exercises similar to those of the Kegel muscles, i.e. the muscles of the bottom of the uterus. I also had internal massages which helped me a lot.

Vaginal massage?

Yes. You have to do it with a vibrator or try it with a partner. But when you get hurt, it’s very hard. You can’t put a tampon on, let alone massage it.

So the massage takes place at the moment of pain? This is terrible torture, is it?

Yes, that’s when you practice. Now that the disease comes back sometimes, it seems to me that these exercises are the best way for me to reduce my pain.

And do you feel that this pain is somehow getting closer? Are there any predictive contractions? How about a tension in the lower abdomen like before your period?

I am just feeling the nerve endings around my vagina connecting to my left foot. It’s weird. Then my foot itches and I can’t stop it, but when I press these nerves at the top, this foot reacts. This is really very puzzling.

This is perhaps the best evidence for doubters that vulvodynia is actually a neurological disease …

Exactly. Recently, I watched a video and it was said that the cause of this disease can even be misalignment of the coccyx, which presses on the nerves that go towards the vagina.

Is it a hereditary disease? Did you even talk openly about her at home?

In my family, no one had her, but many sick people who talked to their relatives about her report that such cases in the family had happened before. Every ninth woman eventually gets vulvodynia, so the circle is large.

I would come back for a moment to the interdisciplinary nature of therapy. I only miss the third element, which is the psychologist. Furnish your world anew, set everything up? What is his role?

It’s not like the pain itself is healed. You also need to focus on what that pain has done to your body. Imagine that you are sick with something you cannot understand. You cannot ride a bike for a year, sit on a chair, wear pants, not to mention the fact that there is no physical closeness to your partner, because there is no way. The brain associates many basic activities and even pleasure only with pain. This is such a constant pain that can go on for years. This is total stress. Imagine you can’t sit on your butt at work.

Pain 24/7

Really? Did you hurt all the time? 24 hours a day, seven days a week? It didn’t let go for a moment?

Yes Yes. It was as if someone was sticking a pin in my vagina, or I was waking up with a tremendous itch. That was where it started.

Itchy vulva or whole body?

This itching started in the private parts but then moved on. It’s just like a mosquito bite. If you scratch it starts to hurt around you. You’re going crazy.

You go crazy, and the partner with whom a woman suffering from vulvodynia lives? My guess is that such an account is being put to a serious test? Did you play open cards right away?

When I publicly disclosed that I had vulvodynia, I was approached by girls who were close to suicide because they did not know what was wrong with them. Nobody could help them. This only shows how much this disease affects the psyche and how much psychological help is necessary. Many relationships did not survive. Many relationships fall apart. Not every man understands and wants to understand what is happening to a woman.

How was it with you?

When I met my husband, this disease was gone. It started after a while. It was never taboo for me. When you feel unwell, you talk about it openly. Together, after the diagnosis, we learned everything – how to recognize signals, relax, massage, stop the progression of the disease, stop symptoms.

You’ve had therapy. You’ve been taking your medication for eight months. Is the disease gone?

Yes, after a year of therapy, I completely got rid of the vulvodynia symptoms. I managed to heal enough to give birth to two children. I have had 15-3 relapses in the last 4 years. Thanks to the fact that I got to know my body and now know how to react to the first symptoms, it takes me about a month to reduce my symptoms to zero.

I can’t imagine what happens to you when pain strikes you on the street, at work …

Your reflex is to clench your fists, your teeth. My husband felt my clenched hand on his more than once and he knew immediately what was going on. It’s as if someone had suddenly stuck a knife into your vagina. While standing in the store, you look at the shelf and suddenly “boom”, you get stabbed. These are such strong signals. Chronic it is itching and burning. It goes on for days, weeks. Recently, for example, this pain triggered a vaginal swab. The next day I was getting itchy. At the beginning, I had to verify that I was not infected with mycosis. I took an oral tablet, but nothing helped, it even made the situation worse. I knew what it was then. I have started an intensive massage of the nerve endings. The experience is painful, but in my case the more “the enemy is attacked”, the better the effect. The symptoms disappeared within a week.

Is there any special need to take care of intimate places in this disease? What cosmetics should you avoid?

Yes. You have to eliminate all kinds of shower gels and soaps. Even underwear has to be washed with baby powder. The shampoo should not reach intimate places while showering. I avoided bathing in a tub and avoiding too hot water.

And underwear only made of natural materials, airy, non-sticky? You probably have to forget about thongs?

No thongs. In life. You come to what serves you by yourself, a little by trial and error. Probably everyone experiences this pain differently. But the truth is, there are times when you really wonder if you should go to a plastic surgeon and cut yourself out. This is the moment when you already know that it really is bad.

We encourage you to listen to the latest episode of the RESET podcast. This time Joanna Kozłowska, author of the book High Sensitivity. A Guide for Those Who Feel Too Much »says that high sensitivity is not a disease or dysfunction – it’s just a set of characteristics that affect the way you perceive and perceive the world. What are the genetics of WWO? What are the perks of being highly sensitive? How to act with your high sensitivity? You will find out by listening to the latest episode of our podcast.