Saturday, March 2

Vulvodynia, the invisible pain

This is a story that is not over yet. It is a story of physical pain and also of suffering from a health system that normalizes and makes women’s pain invisible.

I have suffered from vulvodynia –or chronic vulvar pain– for a year. I know women who have suffered from it for a long time or who have not even been cured. For ten months I have not had any document that proves that I suffer from this pain, only some emergency reports that mentioned “vaginal discomfort” (when, by the way, my vagina does not hurt). For ten months no one diagnosed me with chronic vulvar pain, but that is the name I gave myself to this maddening and disabling pain through reading and experience.

Despite supposedly “having nothing”, as some doctors say, I could not walk more than 15 minutes (now I have improved, but I still do not walk much). I have pain or discomfort in sex, I have had to give up most sports and at work I cannot sit in a chair for long, so I hide as best I can and, when I finish my day, I take the opportunity to cry if I need to. Some days are more bearable and others are unbearable. But, theoretically, I do not suffer from any pathology, my vulva “looks very good” and, simply, “I should relax”. I have also not found any medication that relieves the symptoms.

I feel that my pain is invisible, they have made me believe that it does not exist or they have simply told me that “some women spend many years sick until one day they heal on their own, or not” (comforting phrase from a gynecologist).

I have decided not to settle for this absurd vision and continue to investigate. After a year I have managed to understand this pain a little more and find some professionals who study it. Other women have helped me and if it weren’t for them and for the emotional and financial support that some people give me, I don’t know what would become of me. I know that I will be cured, but every day I think of the women who have believed the version of the doctors or who do not have cultural or economic resources and who may never receive treatment.

What hurts me the most is not having found accompaniment, understanding and not even interest on the part of health professionals. On the contrary, I have often thought about what we call obstetric violence and that I linked to pregnancy and childbirth, but which seems to be present in all areas. Why is it so unpleasant to go to the gynecologist? More than one friend has commented that she felt as if she took the car to the mechanic, but it was about her privacy. Imagine that, in addition, you suffer from a pain that you do not understand where it comes from and that haunts you day after day, consuming your life and generating anxiety, anguish and depression. And that the response to an anxiety crisis in a consultation is “I already told you that you had to shave” or “Woman, it’s no big deal”, or “Take an ibuprofen and lead a normal life” (it’s clear that I’m going to the emergency room because I hadn’t thought about taking ibuprofen).

If it is still not clear what gynecological violence is and if it exists, I could talk about a friend with the same problem who was told by a wise gynecologist to “take a Valium and satisfy your partner”.

The idea of ​​this writing is to give visibility to an invisible pain that many women suffer (vulvodynia), and which is often not talked about simply because it is located in the vulva and it seems that it should be ashamed or that it is less important. So unimportant as not to deserve a diagnosis or a document that proves that you are suffering and that, surely, the pain is incapacitating. That is not necessary, since surely “it is not a big deal” or “you should go on leading a normal life” (practically all the gynecology staff agree on this).

We have already heard of diseases such as endometriosis that were almost undiagnosed until recently. Despite not suffering from the same pathology, I have empathized with these women who felt that they were not taken into account or that their pain was lowered or belittled.

We must continue to demand more research in pathologies of the vulva and vagina, or at least more interest. Stop normalizing the suffering of women and start giving it weight, importance, being able to name it and stop listening to this type of response in consultations. Continue demanding more humanity, empathy and listening and more emotional support in consultation.