Interviews – Songs of Sanity

English transcipt below!

English Transcript

1 Intro

First of all, it's actually very, very interesting that the uterus was used to explain how hysteria works. Hystera is the Greek word for uterus, and there existed the idea that the uterus wanders through the body and creates problems. On the basis of genitals, world and psyche was explained, it was rarely about medicine, it was always about everything. And with that came the idea that the woman, and they were always incredibly binary gender ideas, has no sexual desire of her own, no sexuality of her own, no sexual agency of her own, but also no creative energy. Because everything was explained on the basis of the genitals, that she could not actually participate in the social process because of her genitals. And this can be traced back to the Bible, where the woman is seduced by the devil and therefore we have lost eternal life. So death has entered our perception and pain, that is, everything bad comes from the seductiveness of the woman.

2 With all the pain

The situation I would like to tell you about happened four years ago. It was in a phase where I had already had abdominal pain for a long time and the situation had come to a point where the pain had an extreme impact on my everyday life. I was not in Cologne at the time, but in Berlin. And I was also in the hospital there with a gynecologist and no diagnosis could be made. Then I went back to Cologne and saw the gynecologist again, whom I had already seen a few times. I never really felt comfortable with him. But he was there and I could go to him. At that time I had already outed myself as bisexual to him. He made a strange remark, which I could overlook at that moment, because I felt good.

And then I just went there with all my pain, I was also already extremely psychologically distressed. I didn't know what was going on with my body and I couldn't go about my normal daily life because the pain was getting so bad. I told him that.

He then asked me what my sex life was like. I told him that I was seeing a person regularly and having sex with him, and that it was a man. He changed his whole attitude and tone. And the subtext was, "Well, it is obvious that a person who sleeps with everyone is careless about it." And he then told me specifically that I just, even though I'm in pain and my sex drive is so strong, after all, I risk not being able to have children anymore, that I might have long-term damage from it. And then he gave me a misdiagnosis of an inflammation of the fallopian tubes. As a result, he prescribed me two weeks of bed rest. And he added: "In the past, you could do this on a regular basis: Simply prescribe two weeks of bed rest for women who could not take responsibility for themselves. You can't do it that way anymore, but that's the only thing I can advise.“

That was already completely awful, but especially in a phase in which I was in a slight depression, which was also getting steadily worse, to order someone two weeks of bed rest... Because he was in such a position of power, I complied, although everything inside me said that this was absolutely wrong. I knew that he could not be right. Nevertheless, I still followed the advice, laid in bed for two weeks and felt extremely shitty. At some point I finally found redemption by getting a proper diagnosis in another hospital. But the whole situation made me still not to go to any gynecologist. And I am afraid to talk about private topics, even apart from my sexuality or gender identity, when I meet doctors, because I am constantly on the lookout and feel that I am at fault and that what I am doing is irresponsible and sinful. And that it's obvious that I'm doing something wrong or that I'm sick with the lifestyle that I'm leading.

3 Loaded Up with Meanness

I was in my early mid-20s, I think about 22 or so, and at that time I just stopped taking the pill. And I noticed when I stopped taking it that I became so much more relaxed and much more at ease with myself. I still wanted to ask my gynecologist what other options I had. However, I also wanted to involve my partner at the time. But the moment the two of us walked into the practice, we realized that somehow the sun was setting. Then there was a receptionist who, instead of addressing the fact that she had a problem with a man being in the practice, simply punished us with her manner.

When I was eventually called, my partner at the time wanted to come with me. And then she said, "Nah, not you!" Then I went in and said, "I'm here because I actually wanted to get advice on what options I have, what contraceptive methods are possible for me. Plus I haven't had my period for a very long time and I just wanted to check if everything was okay. I just want to rule out the possibility of pregnancy. Actually, I wanted to do this with my partner, somehow it doesn't seem to fit now. Can we talk about that for a minute because it was just very uncomfortable in the waiting room." And then she was like, "Yeah, how dare you bring a man into this protected place?" I perceived her as very aggressive and also somehow belligerent. So I said, "I just want my partner to know what possibilities there are and how much they affect my body."

And she answered me, "Yes, and after that you go home and your partner says 'You take this and this and this.'" Then just gave me promotional material from the providers of the hormonal IUD, and of this stick, I don't even know what it's called, this hormonal stick. And then she said, "And here for your partner, you can write down the following..." And then she took a yellow Post-It and wrote Google on it, colon. And then a few more names of contraceptive providers. Then she said that she was still aghast. And that as a woman she would never talk to her partner about contraception, because it was none of his business. That was something that only had to do with her and her body.

It's so natural for me that you talk to your partner about what kind of contraception you want to use. Because contraception is not just the woman's business. Both are equally responsible for it.

Well, then I still had the situation that I wanted to know if I was pregnant or not. And then I mentioned while undressing that I have anemia. And then she was just like, behind the curtain, "Well, and then you're surprised that you don't get your period?" This whole tone of voice was just super bad. And I just wanted medical advice on what was good for my body and what was going on with my body at the moment. Then she started examining me with this ultrasound thing, which is being inserted. And was just inside me and said like, "But you're going to get your period soon."

And then I wanted to take out a little bit of that bad vibe and I asked, "It's interesting that you can see that. How can you tell?" And then she was like, "Do you want a crash course in sonography or what? You know what? Every patient has a certain allotment of time here and yours has long since passed. What I'm doing here right now, this is luxury treatment." I just felt so horrible because she was just inside me with this gigantic big thing, giving me so much negativity, and then on top of that telling me that such a fundamental basic exam like an ultrasound is a luxury treatment.

It was just horrible. So really, that's something you don't normally have, that someone is so deep inside you, really literally inside you, and loads you up so blatantly with meanness, too. So I felt super bad afterwards, my boyfriend at the time also felt extremely uncomfortable. And I went out and I didn't know any more than I did before apart from the fact that I'd get my period soon.

4 Interlude I

We didn‘t really have a word for the vulva. So we said vagina when we meant vulva, while the vagina is really only the genital, which connects the visible exterior, the vulva, with the interior, that is, with the cervix and the uterus. In other words, in the language, the genital is reduced to the hole, because there is actually nothing there at all. I remember when we had children, a friend of mine was in daycare and then the kindergarten teacher said to the children, „Look, that‘s little Tom, he has a penis, and that‘s little Tomke, she has nothing there!“ And my friend almost exploded and said, „In fact, Tomke has something there, namely a vulva!“

5 My Libido … Is Back

For a while, I suffered a lot from loss of libido and therefore went to the gynecologist, because I saw a very strong connection to my hormonal contraceptives and wanted to get advice for a copper IUD. I had informed myself beforehand and wanted to get away from hormonal contraceptives, which I had been using since I was 14.

Instead of a consultation, I got more of a sales pitch for a hormonal IUD and then somehow went home very disappointed with a brochure and little advice. I was really only frightened with: "Yes, but do you remember, 14 was a long time ago... The period will then also be very bad. Can you even anymore estimate how strong the pain really is without hormones? Wouldn't you rather think about it again?"

Then it took about two years until I changed gynecologists and went to a clinic that took me seriously in my wish and actually gave me an appointment for the insertion. Now I have the copper IUD for almost a year and I am actually quite happy. I have to say, my libido... is back.

6 Interlude II

Two things about evidence-based medicine. Of course we have that, but what we always overlook is that a great deal in medicine is also unproven. We always have the feeling that everything is totally scientific. But a lot is also vague. And it is an area in which we have little insight, but with which we have a lot of contact. Most of us are patients at some point in our lives. That means it's particularly bad that we don't know how it works. The fact that I don't know how the electricity gets into my socket doesn't have any direct effect on my body as long as it's there and I can turn on the light. But things that directly do something to my body, not only by effect but also by side effect, I would like to know more about that. But I don't get that explained to me when I go to my doctor, because they don't have the time. And with a lot of issues, I'm told: "Oh well, there's nothing you can do about it anyway.

7 Across the Chair

I have never wanted to have children. I brought up the subject with my first gynecologist, also relatively early on. I was regularly given comments along the lines of: What does your boyfriend say? Does he perhaps not want to become a father?

It was also very clear to him that until I was 35, sterilization was out of the question. So I left the practice and went to a practice in Bonn. When I had my first appointment there, I came into the treatment room and sat down on the chair. Opposite the chair was a pinboard with baby photos that could look directly into my vulva, so to speak. I realized very clearly at that moment that this was obviously not a practice in which I would even want to address this topic. So it was very clear to me that I would not go there again, and I preferred not to go for a very long time. Now I have found my third practice and I was actually very happy with the gynecologist I spoke to there. He was very open. So I had the feeling that I could bring up the subject of sterilization relatively quickly. Although he was relatively open to it, he nevertheless said very, very, very often that this must be thought through very thoroughly and also with this emphasis that it must in any case be well thought through, he just really denied me the ability to make this decision myself. And I mean, I'm in my late 30's. I've really thought a lot about this topic in my life and can make this decision wholeheartedly and with absolute conviction and this person is still of the opinion that he knows better.

8 I Was Doing Fine

A few years ago, I went to my gynecologist. I was in my early 30's. I wanted to know from him if I could have children, if everything was all right with me. It was important for me to check this over. He said to me, "You have to find a man first." The emphasis on "you" was so obviously negative... That's all he said. That was all.

Then I went to the same gynecologist again. I wanted to be prescribed a different pill, because the pill I was taking at the time was an old product that was suspected of causing thrombosis.

The gynecologist then prescribed me one of those micropills. However, I did not respond well to it at all. I got side effects, including hair loss and vision problems. Then I went back to him, told him about the side effects, and he didn't go into it at all and just told me that it was because of my psyche. I was mentally unstable and that's where the hair loss came from.

I was doing super well at the time. It just couldn't be because of that. And then I stopped taking the pill and the side effects disappeared. Two years later, I saw a report on TV about a lawsuit in the U.S. in which many women sued a pill manufacturer because of extreme side effects. I then did some research and found out that it was the same substance as in the pill I was taking.

9 Interlude III

I had my first abortion very young and the doctor actually asked my mom, "Does she speak German?" And I thought, "Wow, impressive, ask me!" He didn't say a word to me after that either, even though he knew I spoke German. A completely unimportant question.

All these ideas that really exist, that racialized bodies, especially black bodies are actually insensitive to pain and you don't have to do anything... So there is already both an idea of the naturalness of racialized bodies. There is also a specific structure towards Muslim bodies, especially in terms of gynecology. And the mean thing is, nobody comes to you and says, "Because you're brown, that's how it is with you." But people treat you in a way, you have to decode yourself. Oh, that's based on whatever prejudice.

10 Slut Stamp

I think it was in 2018 or 2019, I was about 24 or 25 years old. That's when I went to see my gynecologist because I had a weird discharge in my underpants that also smelled funny. And I think it also burned. And then I went to the gynecologist and was offered to be tested for all the more common STDs. Then I did it there and was tested for chlamydia, HIV and hepatitis, I think, among other things. I don't remember exactly. And then they called me and then I was already clear, fuck, they have now found something. But I think they also told me on the phone that it wasn't HIV.

Then I was positive for chlamydia for the first time in my life. I say for the first time because I already had it twice. That was of course not great, then I had to go there again. But the treatment options are, I would say, quite good. You're prescribed an antibiotic, which you take for a few days, and in the best case, it's gone right away, and the discharge and everything normalizes again.

Well, the thing was, when I had the consultation with my gynecologist at the time, it was about whether I had regular intercourse with changing partners and how I was then using contraception. And yes, I had to confess to her, to my shame, that I had sex without a condom. That was terrible, because I felt very judged by her, among other things by her physical reaction, but also by the things that she then brought up. She then pushed me into a corner like that, directly gave me a slut stamp. Because I had regularly changing partners and had used contraception without a condom, I was immediately below with her, I noticed that directly.

11 2g Ibuprofen A Day

Around 2018, I stopped taking my birth control pill. Since I had taken the pill my whole life before, I wanted to know what it was like without it. And about half a year later, the pain started. At the beginning it was still okay. Then I went to my gynecologist and of course she said that it was normal period pain, it was nothing. But then the pain got so bad that I had to take painkillers at some point. This went up to 2 grams of ibuprofen a day, which is also well above the normal daily recommended dose. The pain became so severe that I started throwing up at some point. It was around this time that I first heard about endometriosis. And when I talked to some doctors, they thought it was a bit strange. There were a few symptoms that didn't fit, and that's why they always denied it: "No, it should be something else." The normal painkillers stopped working and my doctor didn't want to prescribe me any stronger painkillers. And at some point, I collapsed at the main train station.

I sat in the train and it was also quite stuffy and at some point on the way out I went black. Then the DB security came by relatively quickly and when they then heard something about periods, they went straight on. And so I laid there. And after a while, a young woman came to me and asked me if I needed help. And since I wouldn't have been able to get home in that condition, I agreed to have the ambulance called.

When I arrived at the hospital, the assistant doctor gave me Buscopan, which is a relatively weak painkiller. When the doctor came in later, he looked at the woman and said, "Why aren't you giving her real painkillers? She's in pain." At some point, when I had calmed down a bit, I was supposed to walk into the other room. Then I was told to undress and sit in the gynecologist's chair. And for those who don't know, a gynecologist's chair like that, it has a semi-circular recess. That means you can't sit in it unless you put your legs on this leg holder.

A quarter of an hour with the legs on the holder would not have been the most ideal scenario. So I curled up on one side and somehow held on to the armrest. But that didn't work in the long run either, because I was in pain. And then the blood started to drip onto the floor. And that made me feel very uncomfortable too. That's why I announced that I would go back to the room where the bed was and lie down there. Then it took about ten minutes until the doctor came. But by then I didn't feel like going back. After all the treatments and these inconclusive ultrasounds, these strange devices that they insert into you, I just couldn't do it anymore. And to my surprise, he reacted as if I had attacked him personally. I didn't understand that at all. It was my decision with my body and I had been through this before. I found my decision very understandable. He apparently didn’t.

Even though the symptoms didn't really fit, I was pretty sure it was endometriosis. And then I tried to find out what the normal way would be to get such a diagnosis. That's when I came across an endometriosis diagnostics department. They do laparoscopies, which means they look directly into the abdominal wall to find the endometriosis lesions. However, this is not possible without a prescription from an office-based doctor. So I had to look for another doctor. An operation was recommended to me on the side. But I agreed to it right away. Because I simply wanted to know what was going on with me. I think I have the right to know.

12 Bonus Track

I myself am the head physician of two clinics in Berlin, two gynecological ones.

Medicine is conservative. So we come from a phase of doctor-patient communication that was very hierarchical and directive. You went as a patient to a doctor with a question and the doctor answered that question. And then you did that, that's how it used to be. And we come from this phase of medicine, and of course we want to deal with people at eye level.

What helped me a lot in my communication with people, with patients, was that I once tried to think through this situation between patients and myself in such a way that it became clear: The person is always in need, they have a need, they come to me with a need. And they might even be weakened or have a difficult situation. And I'm there to help it, that's my job.

So as a patient, here's what you can do: For example, you can get your medical history clear and the questions that you have. That's why it's great to deal with the situation beforehand and to get the needs that you have as clear as possible and to formulate them and even maybe to write them down, so that you can then get them out and have the notes at hand in the contact with the doctor. And in addition to that, I would like to see in the conversations that I have with patients that they come out a little stronger afterwards than they came in before, so that they can proceed on their way better. That is a major concern for me.

And the spirit that runs through my clinic, well, when we communicate with each other, how do we treat people, what value do we give to the issue of communication, sometimes it's stressful in the hospital, how do we deal with that? Do we still communicate in a friendly way and at eye level? That we get away from this hierarchy and the directive approach, because I don't think that really does anyone any good.

Many things have really changed, and when I open books from 100 years ago, there's a different zeitgeist, a different philosophy. But of course, things are going too slowly for me and for many others. The decision-making positions in medicine and politics are not diverse. That is, the population is not represented as it is, but it is oriented in the very male mainstream, the staffing. And in gynecology, for example, this is very, very striking. Almost all of the patients there are actually female. This male mainstream has not managed, for example, to ask the right questions from the perspective of gynecological patients.