- Lichen Sclerosus
- Interviews
Sandras Interview
Wie hat alles angefangen?
Burning and itching after sex
Haben Sie bereits eine Diagnose? Wie lange hat es gedauert, bis Sie diese erhalten haben?
Went to the doctor because I thought it was fungus or a sexual disease. Doktor told me it was lichen sklerosus abd to use clob. And then left me to my life. No mental or other support.
In welchem medizinischen Fachgebiet wurden Sie behandelt? Was war das nützlichste Fachgebiet für Sie?
I only went to my gyno yet but an thinking if trying a dermatologist.
Was war bis jetzt am nützlichsten für Sie?
Clob alternated with tracrolismus. Found the tacrolismus in the internet and bought it without any doc telling me. But as I have some doubts about the negative effects if the clob I reduced the application to 2-3 times a week and on the other days use tacrolismus. I‘m also trying chinese herbals and starting a psycho-therapie. AM trying to reduce stress.
Was waren Ihre größten Schwierigkeiten?
On the itching/ burning days it‘s impossible to use underwear and jeans or something like that. I‘m also afraid to lose my sexual life, at some days it is very difficult to have sex. I‘m anxious about my future, about atrophy etc. And I‘m frustrated and concerned because the treatment options like Mona Lisa are sooo expensive that I can‘t afford them. So who has money has a better chance to live well with this fu... disease and who hasn‘t... well... so unfair.
Wie hat Ihr soziales und familiäres Umfeld reagiert? Haben sich soziale oder familiäre Beziehungen verändert?
My husband feels unsecure about the way he should lead with this disease and in our sexual life it has caused a certain uncomfort for both of us. Friends and family don‘t understand the gravidity if this disease abd they feel uncomfortable with speaking about it.
Was haben Sie aufgehört zu tun?
I‘m not masturbating any more, don’t use soap in the genital area anymore, reduced sports to the good days, changed my dressing style to clothes that are more comfortable for my genital zone. I
Was denken Sie über die Zukunft?
I‘m afraid. Don‘t want to lose my sexuality and my femal atributs. Scared of what may come: fusing, atrophy, operations, etc. worrying about the sideeffects of the clob abd about the consequences of the disease for my relationships.
Welche waren bis jetzt die besten Jahre Ihres Lebens? Was haben Sie in diesen Jahren gemacht?
32-41. grown up my kids, a lot of sports and dance and social life. Got back to university/ studying. Was in peace with myself and felt secure.
Was würden Sie gerne tun, wenn Sie dieses Leiden nicht hätten?
Continue a normal life with a normal sexuality.
Wenn Sie Ihr Leben in einem Satz beschreiben müsste, wie würde dieser lauten?
Always fighting - I‘ m so tired of it sometimes.
Abschließend, welchen Rat würden Sie einer Person in einer ähnlichen Situation geben?
Try to apreciate the good days and moments! Look for people in a similar situation to talk. Try to make peace with the disease. And look for your personal way to treat the LS
