Since I was 20 years old, I have been with my partner, whom I also married at 28. We always had a very fulfilling relationship, especially sexually, because sex was always something enjoyable for us. I was also always a very active person overall.
However, as I developed rheumatism, my pain slowed me down more and more over the years. At the beginning of the 2000s, the complaints increased, so I put myself in the hands of the internal rheumatologist. At that time, I was suffering from various and partly load-dependent pains and sleep disturbances. The doctor diagnosed a "non-inflammatory, non-degenerative soft tissue rheumatism". He explicitly denied fibromyalgia because I would not exhibit the depressive symptoms and complaints that are common with it. He attributed my complaints to a pain threshold that was too low, which he thought he could raise to normal levels with the drug amitriptyline, so that I would no longer be so sensitive to pain.
"This prospect made me agree to his therapy suggestion after he dispelled my concerns about possible side effects."
He said that amitriptyline is a proven drug for pain therapy, that one would not become dependent on it, and that the dose used was very low. The main side effect would be fatigue and therefore the time of day at which it should ideally be taken was addressed. Possible further side effects in the sexual area or consequential damages were not discussed. I took the drug daily from 2006 until spring 2016. Initially in the dosage of 20 mg per day, a little later increased to 25 mg, always 1 tablet towards evening.
I could sleep again without pain, was somewhat more relaxed. In the morning, however, I was indeed often very tired and had great difficulty driving. During sexual intercourse, I could definitely still become aroused in the following years while taking the tablet, but became sore shortly after my husband penetrated me. I could no longer feel pleasure. I could no longer reach orgasm. If my husband tried to arouse me without penetrating me, I could hardly tolerate this either, because I got pain, it was very unpleasant. I also quickly became sore when doing this, which had to be treated with sore ointment for a few days each time. The attempt to support with vaginal cream during intercourse failed. Because of this, my husband held back, largely refrained from demanding sex from me. When we tried again, it failed.
In 2016, I learned about a new therapy for my underlying condition, which I began in the spring of 2016. Subsequently, I independently discontinued the pain management medication amitriptyline, as the new therapy significantly improved how I felt. Since stopping amitriptyline, I am no longer excitable at all.
"The clitoris has become numb, the entire vagina is no more sensitive than any other part of the body. It feels like the nerve connection between the head and clitoris has been severed."
The entire area is completely devoid of feeling. I do not feel any internal touch. Only pain on the outer labia and sore spots are uncomfortable to feel. I am no longer ticklish at all - all over my body. I can feel touches (closeness), but I find them pleasant. However, in case of unforeseen touches I get scared and goose bumps. The clitoris does not tolerate touch, it is very unpleasant. In addition, I suffer from numb orgasm: it feels like muscle contractions without a feeling of pleasure, satisfaction is absent, although there is a physical reaction, to rhythmic pressure in the abdomen.
Ever since I stopped being aroused, nothing has been going on in our bedroom; it's been that way for at least four and a half years now. It puts a lot of strain on our marriage. We are much less close to each other. My husband avoids getting aroused by the sight of me or by touching me, since sex can't happen. He himself does not like to be aroused by me because he feels it is selfish, unfair and dirty to satisfy himself when I cannot feel any pleasure at all. I also no longer succeed in trying to sexually arouse/satisfy myself, which I did successfully on a regular basis when I was younger. It is very sad for me and it has alienated me emotionally from my husband. We live together like brother and sister.
Psychologically it is stressful not to be able to have this former closeness to my husband anymore, maybe never. We both suffer from it, even after almost 25 years of marriage. It has distanced/alienated us from each other. As it is on me, my body, it often makes me very sad to be so helpless in it, with no prospect of recovery. A significant loss of quality of life/love. I am sure that these symptoms are not caused by psychological imbalance or similar.
I first learned about PSSD when I saw a report on ZDF about sexual dysfunction after taking psychiatric drugs. I found myself in the description in large parts and in the exchange with other affected persons of the PSSD Hilfe Deutschland e.V. confirmed and encouraged me to deal with it more closely. When I told my new gynecologist (after moving) and my family doctor about my suspicions, they both dismissed them and did not go into further detail. I did not feel that I was being taken seriously. I now hope that the activities of the association will lead to a rethinking in the medical profession and in society.
I have been suffering from PSSD symptoms since about spring 2016. In the meantime, therefore, for five years. The ten years of sexual restrictions while taking, exacerbate the issue additionally. 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 other sufferers would improve if:
a) PSSD patients were taken seriously with their complaints and not just pushed into the psycho corner.
b) PSSD as a consequence of medication would be taken seriously and the potential danger would be pointed out more clearly in advance.
c) Doctors who want to prescribe psychotropic drugs would no longer do so so lightly, but would consider other therapeutic approaches or drugs.
d) Research into the effects of the drugs would be much more intensive, the mechanisms of PSSD would be recognized 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 considerable discomfort through suitable therapies and their lost quality of life could be returned to them, they would experience healing.