Why do you do when doctors won’t help you?

Cecilia’s complaint: “There is no reference medical figure.”

“No doctor has an STD global vision for screenings and the Mycoplasma disease. I feel the responsibility lies entirely on my shoulders.”

Cecilia is 25 and one of the girls who recently decided to write and sign a letter to inform the world about MGen disease. Although we hardly hear about it. Vulvodynia is a Mycoplasma-type pathology that is estimated to affect one in seven women, approximately 15-16% of the female population. It is a highly disabling multi-factorial syndrome. This MGen condition falls within the so-called allodynia, which is essentially characterised by the appearance of pain that comes with normally safe stimuli.

Don’t wait for Doctors.

Tests for the STD Vulvodynia affect the female genital organs. It manifests itself with burning and chronic pain that appears especially during urination or sexual intercourse. The most frequent form of vulvodynia, which affects approximately 80% of cases. Is localised to the vaginal vestibule, defined as vulvar vestibulitis or vestibulodynia. In the most severe forms, exams show that Mycoplasma disease causes very intense pain. Often described as electric shocks, pin pricks or stab wounds. It can lead to real lacerations of the skin and mucous membranes involved.

Vulvodynia is a very widespread condition. But it is also very quietened by women themselves due to embarrassment. And a sense of distrust linked to having attempted various unsuccessful therapeutic approaches. Cecilia, however, decided to break this silence and tell her story to OMaR.

How it started

“It all started two and a half years ago when I started feeling burning during sex. Within two months, this burning intensified. It became so strong that I was no longer able to have a sexual life. As it increased, it became omnipresent, even throughout the day. I went to the gynaecologist, who had me do several swabs and prescribed me some ovules, but it didn’t didn’t improve. In short, we accomplished nothing. The doctor, therefore, subjected me ‘to the ‘swab test’, which Cecilia explains. The MGen Home kit used to diagnose vulvodynia is called IT.

Even if, in reality, you arrive at the Mycoplasma diagnosis test result more by exclusion unless you get a panel of STD, the doctor carries it out by applying very light pressure on some points and taking precise measurements of the vestibule and vulva to verify the sensitivity of this area and evaluate whether there is an exaggerated painful response compared to the applied stimulus.

I was positive, but the doctor specified that to have diagnostic confirmation, I would have to experience these pains for 6 consecutive months. Furthermore, she explained that she was not very knowledgeable about the possible treatments for this pathology. As the months went by, my situation became more and more difficult to bear, so I changed my gynaecologist, who, yes, spoke to me about vulvodynia but decided it to be a completely psychological problem and as therapy; he offered me cream didn’t help at all.

Doing research

Cecilia “ays – “I was confused”. But after 5-6 months, I was lucky to meet some smart women about the pathology. I found an association forum on the Internet that indicated some specialised doctors. After 8-9 months, I turned to a midwife and osteopath in Turin, who confirmed the diagnosis and gave me some useful advice, both behavioural and therapeutic: she advised me to take some pills. Also, she helped me improve my intestinal balance, which affected the pathology.

Giving a name and a face to my illness was positive.

However, on the other hand, it was clear to me that the treatments would be very long and the recovery uncertain. From a psychological point of view, all this put me in great difficulty. For example, I was admitted to the Erasmus project, but I was torn for a long time to decide whether to leave because vulvodynia severely limits daily life. In the end, reluctantly, I had to give up.”

Moving on ‘Today”, – says Cecilia – “I am being forced to apply gels and”creams continuously”. As well as often doing a self-massage at the entrance to the vulva. To loosen the contracted muscles of the pelvic floor. I have to be careful with my diet. And the more often burning, if not continuous, affects me greatly. It often appears without warning or after any small stimulus, for example, sitting for more than 15-20 minutes, and to make it go away. And I have to get up and walk. A similar situation makes even simple studying difficult. I turned to numerous doctors and health professionals and tried Mycoplasma Home tests and also many ineffective therapies with unpleasant side effects. No treatment works for all patients. However, some STD medications have helped me. For about a year, I have been slightly better.

I have fewer problems sitting up, but I can’t have sex.

As time goes on, when no improvements are seen – says Cecilia – a condition like this becomes increasingly hard, especially when I think of such an uncertain futdon’tI don’t know if I will be able to recover. I must bear the costs because vulvodynia is not a recognised pathology. I’m the one who has to arrange for MGen treatment tests and therapy and to find an  STD infection expert who can help me. The biggest problem is finding a professional figure who helps the patient on his journey. Every ‘doctor ‘gives his little’ piece’, but no doctor has a global vision of vulvodynia. I feel the responsibility for the disease lies entirely on my shoulders, and this is the most frustrating thing.