For ten years I have gone to different medical professionals, both public and private, from different specialties (gynecologists, urologists, neurologists, stomatologists, rheumatologists, traumatologists…) so that they not only soothe these unbearable pains, but also tell me what disease was the cause of my insufferable life. Most of them didn’t even deign to explore me. Those who did, did so superficially, without asking for tests to find out what was happening to me, referring me to psychiatry, where they told me at the time that I was a hypochondriac.
I had to live with that: with the misunderstanding of the specialists, of my environment (family, friends who were left behind, I lost jobs due to my pain that was accompanied by fevers and they didn’t even see me in the emergency room).
It was in June 2022 when, due to someone else’s issue – at first I thought so – I went to the doctor Coto’s office (dermatologist), and what at first seemed like it was going to be a simple allergic reaction to a shower gel, which even caused me a fever when I showered, it turns out that after his exploration he found that it was not an allergic reaction but a vulvodynia. He prescribed magisterial formulas to relieve the burning pains I felt. I went to his office a few times and thanks to him I am currently writing this story. He is a great person, with an extreme vocation and amazing humanity. Thanks to him I’m still alive. I spent a week in June planning my own death because the pain was greater than what is not written.
That diagnosis opened the way for me after doing an MRI where it was clearly seen that my pudendal nerves were encompassed by fibrosis. At last, I already had the main diagnosis, what was causing my vulvodynia.
I have to put a bottle of frozen water between my legs to relieve the constant burning
Pudendal neuropathy is a cruel disease, since its branches extend throughout the pelvic area. It’s so disabling that I can’t sit down. I live my life standing up and lying down, which makes my hips suffer. I feel needles in the vagina, burning to the uterus and continuous electric shocks that run through the entire area of the pelvis to the toes.
I performed a specific resonance for the pudendal nerves and two electromyographies, one seven months apart from the previous one, where it can already be seen that one of the nerves is getting worse and worse and the pain has increased and it can be seen that the disease is progressing rapidly . I don’t even want to think about what quality of life I will have from now on a year from now.
Pudendal nerve neuropathy affects both women and men. The first diagnosed with this disease was a French cyclist, in 1987, who began to feel perineal pain. For this reason, it is also known as “the cyclist’s disease”, although I prefer to call it “the disease of suicidal pain”. I have acquaintances who suffer just as much as women. Some feel a burning sensation in the penis and others a freezing sensation. All added to the intense pain around the genitals; problems urinating, since many people already have to catheterize for life; and others suffer pain when defecating. Many others are affected by having sexual relations.
Being a “rare” disease, it has no research. Therefore, there is no cure or treatment that helps us to lead a normal life. The health system has abandoned us. When the pain is so intense, I can only think of suicide, because I haven’t lived for many years, I’ve actually survived. When I tell the doctors that at that moment I need to request euthanasia, they look at me scared because they really can’t imagine the pain I suffer. I have received advice from people with this disease. I have followed them to the letter: stretching, diving into cold water pools, beach… Nothing has helped me.
In Asturias we are a large group of victims of pudendal nerve neuropathy. The disease prevents us from working, and it can take years for them to recognize a disability (hopefully they grant it to us).
Psychological and often psychiatric care is a priority to help us manage pain, accept the disease and remove thoughts of suicide, which at least in my case are almost continuous. I also owe a good part of my strength to continue moving forward to my psychiatrist, Javier Caballer, from La Corredoria. Those recurring thoughts are burning the mind, and with that constant and chronic pain I often wonder what I’m still doing in this life. I already lost everything, I have nothing more to lose… and every day I have less strength to continue.
When a person complains it is because of something, because something is wrong with their body and because they are in pain. Health, both public and private, needs more specialists with a vocation and humanity. I do not demand a cure, but I do demand that they listen to the patient, and that what has happened to me after ten years of suffering does not happen to anyone else.
Let the name of this damn disease reverberate, neuropathy of the pudendal nerves, which forces me to lie down and put a bottle of frozen water between my legs to relieve the constant burning. I have stopped wearing women’s underwear because it also causes pain. Medications do not relieve me. Anxiolytics and hypnotics make me dizzy, but I still feel the pain.
I take CBD and THC drops, which is the only thing that helps me, and although it is not yet legalized in Spain, it is less legal to have a person with excruciating pain for years, which have left me with deep trauma and an sensitization syndrome. center for chronic pain (diagnosed by a pain unit in Madrid).
I do not want to finish without thanking the director of Health Care and Public Health of HUCA, José Antonio Vecino González, for the treatment he gave me after filing a claim for treatment that I considered subhuman. A great pleasure to know that people like this work from above. At least, it hasn’t left me stranded, as several doctors have done for not knowing how to deal with the disease. He rose to the occasion and that has given me the strength to keep going, fighting against this damn disease and knowing that I have great support from him. Thank you very much for your attention and the respect you had towards me.
I conclude by underlining a message: pudendal neuropathy patients do not live, we survive.