Bettina*, 53, Amitriptylin

The prospect of spending the rest of my life as an asexual being makes me very sad

>> Read this story in German. I've been with my partner since I was 20, whom I married when I was 28. We have always had a very fulfilling relationship, especially sexually, because sex has always been something we enjoy. I've always been a very active person overall. Since I was suffering from rheumatism, however, my pain slowed me down more and more over the years. At the beginning of the 2000s, the complaints increased, so that I put myself in the hands of an internal rheumatologist. At that time I was suffering from various pains and sleep disorders, some of which were stress-related. The doctor diagnosed "non-inflammatory, non-degenerative soft tissue rheumatism". He expressly denied fibromyalgia, since I would not have the depressive symptoms and complaints that are common with it. He attributed my symptoms to a pain threshold that was too low, which he thought he could raise to a normal level with the drug amitriptyline, so that I was no longer so sensitive to pain. "This prospect made me agree with his therapy proposal after he allayed my concerns about possible side effects." He said that amitriptyline is a tried-and-tested pain reliever that doesn't make you dependent on it, and that the dose used is very small. The main side effect would be fatigue and therefore the time of day at which it should ideally be taken was addressed. Any other side effects in the sexual area or consequential damage were not discussed. I took the drug daily from 2006 to spring 2016. First in the dosage of 20 mg per day, a little later increased to 25 mg, always 1 tablet in the evening. I was able to sleep pain-free again and was a little more relaxed. In fact, I was often very tired in the mornings and found it very difficult to drive. In the years that followed I was still able to become aroused during intercourse while taking it, but became sore shortly after my husband penetrated it. I could no longer feel pleasure. I couldn't have an orgasm anymore. When my husband tried to arouse me without penetrating me, I could hardly tolerate that either, as I was in pain, it was very uncomfortable. I also quickly became sore, which had to be treated with wound ointment for a few days. The attempt to support intercourse with vaginal cream failed. As a result, my husband held back and largely refrained from demanding sex from me. If we tried again, it failed. In 2016 I got to know a new therapy for my underlying disease, which I started in spring 2016. As a result, I discontinued the pain medication amitriptyline on my own, as the new therapy improved my condition significantly. Since stopping amitriptyline, I am no longer excitable. The clitoris has become numb, the entire vagina is no more sensitive than any other part of the body. "It feels as if the nerve connection between the head and the clitoris has been severed. The entire area is completely without feeling. I don't feel any internal touch." Only pain on the outer labia and sores are felt unpleasantly. I'm not ticklish at all anymore - all over my body. Feel touches (closeness), feel them as pleasant. However, I startle and get goosebumps when I am touched unexpectedly. The clitoris does not tolerate touching, it is very uncomfortable. I also suffer from an emotionless orgasm: it feels like muscle contractions without pleasure, there is no satisfaction, although there is a physical reaction to rhythmic pressure in the abdomen. Since I was no longer excitable, nothing works in our bedroom, it has been like this for at least four and a half years. It puts a lot of strain on our marriage. We're a lot less close. My husband avoids getting aroused by looking at me or by touching me, as sex cannot happen. He himself doesn't like being aroused by me as he finds it selfish, unfair and dirty to masturbate when I can't feel any pleasure. Even trying to arouse/satisfy myself sexually no longer works, which I regularly did successfully in my youth. It is very sad for me and it has emotionally alienated me from my husband. We live together like brother and sister. It is mentally stressful not to be able to have that closeness to my husband any longer, maybe never again. We both suffer from it, even after almost 25 years of marriage. It has alienated us from each other. Since it's up to me, my body, it often makes me very sad to be so helpless in it, with no prospect of improvement. A significant loss of quality of life/love. I am sure that these symptoms are not caused by mental imbalance or anything like that. I only found out about PSSD when I saw a report on ZDF about sexual dysfunction after taking psychotropic drugs. I found myself in large parts of the description and in exchange with other affected people from the PSSD Hilfe Deutschland e. V. confirmed and encouraged me to take a closer look at it. When I told my new gynecologist (after moving) and my family doctor about my suspicion, they both dismissed it and didn't go into it any further. I didn't feel that I was being taken seriously. I now hope that the activities of the association will lead to a rethink in the medical profession and in society. So I've been suffering from PSSD symptoms since about spring 2016. So now for five years. The ten years of sexual restrictions while taking the drug further aggravate the issue. However, the prospect of possibly never getting rid of PSSD and having to spend the rest of my life as an asexual being makes me very sad. Because my husband and I used to have a very fulfilling sex life. I think that my situation and that of the other affected people would improve if: as a PSSD patient you were taken seriously with your symptoms and not just pushed into the psycho corner. PSSD would be taken seriously as a result of medication and the danger would be pointed out more clearly in advance. Doctors who want to prescribe psychotropic drugs would no longer do so so lightly, but would consider other therapeutic approaches or medication. Much more intensive research would be carried out into the effects of the drugs, PSSD would be recognized in its mechanisms and treatment approaches would be developed. And as a result, there would be no more new PSSD cases, PSSD sufferers would be relieved of the significant symptoms through appropriate therapies and their lost quality of life could be restored, they would experience healing. * Name changed
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