Postorgasmic-Illness-Syndrome Interview

Interview with a sufferer -“POIS is like a curse”

Pascal is 50 years old, divorced, has two children and lives in Berlin, Germany. He has suffered from postorgasmic-illness-syndrome for 25 years. The illness came creeping into his life. We talk to him about his POIS disorder and the effects it has had on his love life, his family, his work and his feelings.

Dear Pascal, first of all, thank you very much for agreeing to this interview! Please tell us a bit about yourself and your journey with POIS. How did you find out that you suffer from post-orgasmic illness syndrome?

I am 50 years old and have been suffering from POIS for about 25 years. This means that it didn’t start with my first ejaculation, but much later. That’s why it’s also called “secondary type”. Up until the age of 26, my sexual development was absolutely unremarkable and I always saw sexuality as something positive. And then POIS suddenly came into my life.

How exactly did that manifest itself?

When I was around 26 years old, I suddenly started to feel a strange dazed feeling in my head for a day after every ejaculation, which had a negative impact on my ability to concentrate. Reliable After 24 hours, however, the symptoms had completely disappeared again. As I now know, this symptom is “brain fog”, which also occurs with other illnesses (e.g. post-Covid).

However, the duration of the symptoms increased more and more over the years, from 3 to 5 to 7, 12 and 14 days. From the age of around 40, the episodes regularly lasted two and a half weeks after a single ejaculation.

And how did you find out that it was POIS?

I was completely unaware of what it was for the first few years, carried a lot of shame around with me and then found medical support at the Institute for Sexual Medicine at the Charité in Berlin in 2003. Unfortunately, none of the many therapeutic approaches and attempts have been able to help me alleviate the symptoms so far. Nevertheless, I am still being treated there and I am very grateful that my illness is taken seriously there – in contrast to many other specialists I have seen.

What treatments have you already tried?

The study situation was still very sparse at the time. I then tried all kinds of medication through the Charité, from alpha and beta blockers, Oxitocyn therapy, antidepressants, cortisone and antiandrogens. I also tried acupuncture and even hypnosis! Unfortunately, none of this worked in the end. But I’m not giving up hope that there will be a solution at some point.

What happened next?

In 2012, I came across the website www.poiscenter.com on the internet and have known ever since that there are other sufferers and that there is a name for this condition: “Post Orgasmic Illness Syndrome.” It was a huge relief to realize that I wasn’t alone.

Another important step was in 2024, when I suddenly got to know three other sufferers in Berlin through Charité Sexual Medicine.

How exactly did that happen?

After I was virtually the only POIS patient at the Charité for 20 years, three other patients gradually appeared there within a short space of time. All of them had already gone through many years of suffering and searching and ended up at Charité Sexual Medicine.

The contact was then established via our mutual doctor. I think we were all really happy to see other real people with POIS. Until then, the only contact we’d had with other sufferers was via the internet, which was of course very helpful.

We then simply got together in my living room and the self-help group was practically founded. The first meetings went on until after midnight because we were so happy to be able to talk to each other. Since then, we’ve met once a month. In the beginning it was always in my living room, but recently we’ve been given premises by the Berlin self-help contact point SEKIS.

How important is the topic of self-help for you?

This personal exchange is totally valuable because you simply feel totally understood and realize that you are not alone with this very specific illness. And the group is an absolute safe space. There are no taboos there and you can talk about anything that is not possible anywhere else. I hope that over time even more people affected will become aware of us. I can only motivate all those affected to get in touch with POIS Germany and to network – analog or digital. This helps tremendously in coping with the disease.

We have now talked a lot about your long ordeal. Please describe your symptoms for us.

Unlike many others, I actually “only” suffer from brain fog. It has remained that way for all these years.

How exactly does this brainfog feel for you?

Brainfog feels like someone has suddenly pulled the cognitive and emotional plug on me. Brainfog cuts me off from my brain and prevents self-determined access to language, memory and concentration. 5 minutes after ejaculation, my IQ drops by what feels like 40 points.

The easiest everyday tasks then seem like impenetrable, complex puzzles. How do you drill a hole in the wall, what do the instructions for the children’s camera say, what does the letter from the bank say? What is the name of the colleague I have been working with for 10 years?That sounds dramatic. What does that do to you?

I’m raging inside with despair because I know that the things I don’t understand or remember now are very simple, but I have no chance of understanding them. I’m raging inside with anger, frustration and despair and want to bang my head against the wall to make it work properly again …

I am totally thin-skinned because I no longer understand anything – cognitively with my back to the wall, I react aggressively like a wounded animal, suspicious and disgusted by my environment. Emotionally, I become completely numb, fatalistic, I don’t care about anything apart from my children.

You have two children. Do they know about your illness and why their father is sometimes in a bad mood?

Yes, I have two children. Their love gives me strength to bear the illness. But I have been able to hide the illness from them so far.

Are you currently in a relationship?

No, I am not. Unfortunately, my marriage died after many years because of the illness. My wife tried to support me for a long time, but then couldn’t bear to live with me and POIS any longer. I can understand that very well.Could you imagine a partnership again even though you have POIS?

That’s a good question. Of course, I keep thinking about how I can live any kind of partnership and sexuality under these circumstances. A close relationship where you see each other several times a week or even live together is out of the question with POIS, as it is almost unbearable for both parties.

I find being close to the other person during POIS an imposition. At the same time, I also find myself an imposition for my partner. I’m uncommunicative, bad-tempered and even TV evenings together are too much for me.

Not to mention the mutual unfulfilled need for (spontaneous) tenderness, closeness and sexuality.

But surely you still have a need for closeness?

Absolutely. Despite everything, the need for closeness keeps creeping into my head and body and I think about how it might be possible to fulfill it. I’ve been registered on dating apps for a long time and I keep getting likes from women I’d like to get to know.And?

After a few dates in the beginning, I’ve hardly written to a woman for almost two years now because I’m too doubtful about a real prospect.

When women like me, I often imagine what would be possible under normal circumstances. Although the frustration increases with every nice face that I never write to. It’s all very depressing.

What kind of relationship could you imagine with POIS?

The ideal situation would be one in which I meet a woman every four weeks or so to have a good chat, do something nice and, of course, get intimate. And she shouldn’t be bothered by the fact that I feel bad after such meetings. She should believe me that it was still nice, that I have no regrets and that I’m already looking forward to the next time, even though I can’t bring myself to smile.

Has POIS changed your attitude towards sexuality?

I have always liked sexuality. But now I have to deal with the fact that my sex life has been as good as over for 15 years. And if there is no solution for POIS, then – with a few exceptions – it will probably stay that way for the rest of my life.

I mean, can you even speak of a “sex life” if you try to avoid ejaculation at all costs? When you’re surprised by wet dreams at the age of 50? Or when you masturbate every four weeks because you simply can’t stand it any longer. And not because you really want to? This disease is like a curse.

Apart from relationships and sexuality, how would you say POIS affects your life?

POIS often makes me very lonely. Due to the symptoms, I am often unable to participate in social activities, my commitments are always conditional. Because ultimately you never know how long an episode will last or when the disease will strike, for example after nocturnal seminal emissions.

If I can’t avoid attending family celebrations, for example, despite having symptoms, it’s just a matter of getting through it somehow and then withdrawing again immediately afterwards, exhausted. With symptoms, every social interaction is a terrible ordeal.

I also rarely suggest dates with friends. The most loyal ones get in touch at some point and I try to keep track of my upcoming POIS phases to see if I can agree to meet up. All subject to change, of course.

My calendar is not made up of days, months, weeks, days, but of episodes. When will the next pois phase be, for when can I or must I plan an ejaculation, so that the brainfog doesn’t have too serious an impact on my private or professional life. It’s a constant calculation, counting days, speculating about clear phases and phases with brainfog.

And what does a typical POIS day look like for you?

During a POIS episode, I just try to kill time somehow, to let the clock run down so that I can take a break in my sleep at night. This is then repeated day after day until the brainfog has disappeared after 8 to 10 days.

I often really don’t know what to do with my time when I can’t read, can’t even follow the TV and it’s still far too early to sleep. At the same time, all this unused time frustrates me to no end.

In POIS mode, I also eat far too many calories in an attempt to distract and entertain myself.

The only thing that still works is listening to music, the only relief I know is alcohol, because it makes me indifferent and relaxes my boarded-up head.

On these days, I try to prioritize the unavoidable things and leave everything else to one side. So after an episode, I’m left with a mountain of unfinished business.

How do you deal with it at work when you and your brain are basically not functioning properly?

It’s actually very stressful. I have a job that challenges me mentally. I have to create texts and intellectual products to fixed deadlines and present them.

There is also intensive e-mail communication and team exchanges. Carrying out this work with my Brainfog and doing it conscientiously is an almost impossible task, although it has always worked out so far.

Because my brainfog episodes last so long and keep recurring, I can’t keep calling in sick. If I let the illness rule my life, I wouldn’t be able to do my job at all. So I struggle through these days with brain fog. I wake up in the morning dreading the day and feeling like I’m facing an insurmountable mountain.

I then direct myself from bed to work with simple instructions (“Get up, take a shower, get dressed, have breakfast, take the children to school, drive to work, …”) in order to divide the day into manageable tasks.

I avoid talking to my colleagues as much as possible and escape home as quickly as possible after work. I only do the absolutely essential tasks; anything that is left undone I have to do when I am able to do it again.

The work is like “riding the razor’s edge” – either I manage to work with Brainfog or I have to give up completely. There is no in-between.

What about your colleagues and superiors? Do they know what’s going on with you?

Of course I keep my illness a secret at work, because I work with a lot of people. Of course, it would be nice to be able to deal with it openly at some point, just like with other illnesses. But unfortunately POIS is not an issue that can be communicated as easily as other illnesses.

It was only after I separated from my ex-wife that I confided in two colleagues who were friends of mine. Although they were blindsided, they were very open and empathetic. So now I do have two confidants at work, which ultimately gives me more security as I now know who I can confide in on a bad day.

But I keep my secret from everyone else and hope not to be “found out” at some point. Overall, you are under a lot of pressure with POIS. Pressure to keep the illness a secret and also the pressure to cover up at work how bad you’re actually feeling and that you might not actually understand what your colleagues or superiors want from you.

These are all very massive effects on work and private life. How much would you say your mood is affected by POIS?

To be honest, I’ve gotten used to living in despair. Despair is my basic emotional state.

At the same time, of course, there is hope for a cure. It is completely absurd to live everyday life and function from the outside without the conviction that at some point everything could be good again – or at least much better than it is.

I have tried many medications, but nothing has helped in any way. Nevertheless, I have to keep going because maybe a miracle will happen at some point. And at the same time, I have to expect that everything will stay as it is and that I will go through another 30 years of hell.

What goals can you have if nothing is predictable and you can’t contribute to changing anything yourself?

Even though you would be prepared to make many sacrifices?

Dear Pascal, thank you very much for the open conversation!

Would you also like to share your story?
Then write to us at contact@postorgasmic-illness-syndrome.com