Foreword

It is important to reiterate at this point that this is my personal story. Every case of CPPS is different and requires individual strategies and means of coping. I am not here to tell you what is right or wrong, but to encourage you that you can recover from CPPS! What worked well for me may be less helpful for you - and vice versa. Nevertheless, I will give you one or two generally applicable recommendations along the way.

I have deliberately gone into great detail in my story. I know from my own experience that without details it is often difficult for friends and acquaintances to understand life with CPPS, let alone empathise with your situation. It's worth talking to them and being open about your symptoms and how you feel. It's not enough to tell them you have chronic pelvic pain because they won't know what it is. Only when they know what's really going on can they give you the right support.

How it all began

My pelvic pain started in December 2019. I was 32 years old at the time, had a good job as a management consultant in the financial sector and was very physically fit thanks to daily exercise. I was fully involved everywhere, working overtime at work, doing sport, but also partying on the weekend. Let's put it this way: I was constantly on edge, and that also affected my sleep. If you also have trouble saying no and want to help everyone, it can become a pretty explosive mixture. The next morning, after a night out with friends, I started to notice symptoms: a pulling sensation in the shaft of my best part during erection - yes, when I say my 'best part', I mean my penis - and hypersensitivity to touch. At the same time, I was plagued by back pain in my lower back, although this had been happening before the CPPS symptoms.

The symptoms regularly worsened while I was working in the office. As soon as I came home and changed my clothes (from a suit to loose-fitting trousers), they improved somewhat. Sitting at work was uncomfortable because I felt pressure in the perineal area. One particularly bad night with sudden stabbing pains in my best part finally made me fear that it could be a sexually transmitted disease.

I made an appointment with a urologist and also visited a chiropractor because of the back pain. The existing symptoms were soon joined by a recurring slight burning sensation at the tip of my best part and, on some days, a sharp, stabbing pain in the urethra, especially in the evening.

The urologist gave me a two-week prophylactic course of doxycycline. During this time, sperm, urine and a smear of the urethra were examined, and he also examined the prostate, kidneys and bladder. All test results were negative and the symptoms persisted despite antibiotics. In February 2020, I was finally diagnosed with CPPS.

I was sceptical. How could I, an athletic, young and healthy man, suddenly suffer from chronic pelvic pain? Why had it hit me of all people? After all, my colleagues had equally stressful jobs and also enjoyed life at the weekend.

Through the rabbit hole

I started searching the internet for causes and solutions for CPPS, hoping to get rid of the symptoms quickly. But I found that there were few helpful resources for men. Information and studies were often outdated and I found many fellow sufferers on forums, but few success stories.

The realisation that there wasn't THE medication, THE doctor or THE treatment method left me in despair. I felt alone with my diagnosis and overwhelmed by the jungle of information, half-truths and contradictory statements.

In March 2020, my symptoms were as follows: a constant slight burning sensation at the tip of my best piece (24 hours a day, 7 days a week), burning and pain during and after urination and during ejaculation. Several ejaculations a day made the pain worse. The last drop of urine in particular felt like a lightning strike. There was also pain in my lower back.

Out of shame, I didn't talk to anyone around me about the symptoms. After all, pain in the best part is not a suitable topic for an aperitif, an icebreaker or an elevator pitch. I started TENS therapy with my urologist and did daily stretches that I had found on the internet. At the same time, I saw a homeopath and alternated between sitting and standing at work to relieve the pressure on my pelvic floor. I stopped jogging because I had been told that it strains the pelvic floor and instead went for regular walks.

A word of advice at this point: Exercise that does not make your symptoms worse is very important for CPPS. If jogging does not aggravate your symptoms, you can continue jogging without hesitation. If this is not possible, start with short walks and gradually increase the duration. Now about sitting: Sitting for long periods or remaining in the same position is unhealthy even without CPPS. It is best to change your position from time to time, for example between sitting and standing.

I also used to take quercetin tablets every day, which studies have shown to have an anti-inflammatory effect. However, they had no effect on me.

Six months after the diagnosis

Six months after the diagnosis, I had made hardly any progress. I went to a physiotherapist who showed me exercises for my lower back and trained my pelvic floor with TENS and biofeedback. I left homeopathy behind and signed up for acupuncture instead. At the same time, I continued with the pelvic floor exercises and walking and stopped visiting the chiropractor.

When there was no improvement, I sought a second opinion from another urologist. He told me matter-of-factly that I had fallen into the ‘black hole of urology’ - not very empathetic, but unfortunately true. He prescribed alpha blockers for me to try for a fortnight. However, after reading about the side effects, I decided against it. Please note: This is not a general recommendation. Medication can help to make pain more bearable in certain cases.

In October 2020, I was referred to a physiotherapist who specializes in the pelvic floor. She performed internal trigger point massages (if you're wondering what that is, it involves releasing tense muscles inside the pelvic floor - yes, it means exactly what you think it means, and no, relaxing is different) and abdominal massages. At the same time, I went to see an osteopath who explained to me that my posture and tension could be the cause of my pelvic pain.

I started additional physiotherapy for my lower back to strengthen the muscles. The back pain eventually disappeared, but CPPS remained.

At the same time, I added breathing exercises and Jacobson's Progressive Muscle Relaxation to my routine, as I had read that relaxation can have a positive effect on the pelvic floor muscles.

A little tip: there are many different relaxation, mindfulness and meditation techniques. It's worth trying a few to find something you like and that feels good. For example, I am a big fan of 'body scans'. It's also important to choose a duration that you can do every day, so you don't give up because you suddenly don't have the time.

Review after one year of CPPS

After a year of CPPS, it was time to take stock. My symptoms at the end of 2020 were:

- A slight burning sensation at the tip of my best part that lasted around the clock.

- A burning sensation during and after urination, which sometimes got worse.

- An unpleasant feeling in my penis after ejaculation that lasted longer.

Everything I had tried so far only helped to a limited extent. I had to keep working even though I was in pain around the clock. Going for walks seemed to alleviate the symptoms somewhat, and drinking nettle tea helped to relieve the burning sensation when urinating.

However, certain activities made my symptoms worse:

- Alcohol led to a significant worsening in the days following consumption.

- Trying to delay orgasm or ejaculating several times in a row caused severe discomfort for several days.

- Stress or anger at work had a direct negative effect on my pelvic floor.

These observations ultimately proved to be very important for my recovery process.

A new attempt

As I wasn't making any significant progress, I decided to try other forms of therapy. I started with psychotherapy as I suspected that trauma might be involved. I also tried hypnosis, shock wave therapy (ESWT) and epsom salt baths. Unfortunately, these approaches were also unsuccessful in my case. There was no change in my symptoms.

I would like to emphasise at this point: If you can no longer cope with your psychological distress, I urge you to seek help. It's important to have support when the pain and the situation seem overwhelming.

The turning point: Karl Monahan

In January 2021, during another internet search, I came across an article entitled Prostatitis: ‹How I meditated away chronic pelvic pain›. In it, Henri Astier shared how meditation and mindfulness had helped him with CPPS. He also mentioned a sports massage therapist and former CPPS sufferer called Karl Monahan, who runs a clinic for chronic pelvic pain and prostatitis in London.

On 3 January 2021, I filled out Karl Monahan's patient intake form and met him shortly after via Zoom call. For the first time, I was able to speak to someone who knew from personal experience what it was like to suffer from CPPS. Karl explained to me in an understandable way what was wrong with me: my nervous system was overstimulated and in a chronic fight-or-flight mode. My body and mind couldn't rest, which was affecting my pelvic floor due to the constant tension in the muscles there.

I had focussed so much on CPPS in the last few months that the illness dominated my whole life. I hardly left the house, had given up sport and lived in a state of constant anxiety.

Karl helped me with a lot of empathy, strategies and tools to change my perspective and change my lifestyle. Step by step, I brought calm into my everyday life. Under Karl's guidance, I made some decisive changes in my life. I quit my job as a management consultant, which I found stressful, and gave up alcohol, cigarettes and coffee completely for the time being - the latter ultimately promotes the release of cortisol. I also started to incorporate meditation and mindfulness more into my everyday life. Lo and behold, these measures significantly improved my sleep. I also slowly started exercising again and, thanks to a podcast recommended by Karl, gradually switched from regular walks to light jogging. As my diet was already healthy, I didn't have to change anything here. I implemented all these changes step by step with Karl over several months.

At this point I decided not to have any further treatment apart from Karl. A final visit to the urologist was to carry out a so-called 2-glass test, to make sure there was really no other underlying cause.

Things are looking up

The recovery from CPPS was not a linear process. There were repeated flare-ups of symptoms, sometimes lasting up to a week, before they returned to their original level. Thanks to Karl, however, I knew that such episodes were part of the healing process and did not mean a relapse to zero.

Gradually, I realised that I was experiencing pain-free hours for the first time. This turned into pain-free days, then weeks and finally months. Over time, the pain-free periods became longer and longer and I began to regain control of my condition.

Today

You're probably wondering: am I completely cured of CPPS? Yes, today, after three years, I am leading a completely normal life again - and yes, I am even drinking coffee every day again.

CPPS was not a blessing, but it has forced me to find a new balance in my life. I have learnt to listen more to my body and my needs. After stressful weeks at work, I consciously refrain from spending the weekend with excessive alcohol consumption or other unhealthy activities. Instead, I purposefully build in mental and physical relaxation.

CPPS has shown me how important a healthy lifestyle and inner balance are. These changes have not only contributed to my recovery, but have also strengthened my resilience. Today I am pain-free and have turned my back on CPPS for good.

To this day, there is no miracle cure for CPPS and the healing process took me a lot of patience and time. Therefore, I can only recommend that you find a very caring therapist who is familiar with CPPS and can support you holistically on your road to recovery. You don't have to deal with CPPS on your own, but the will, discipline and commitment to improve your situation must ultimately come from yourself. No therapist, no seminar and no book can do this work for you.

I hope I have been able to encourage you with my story and give you helpful impulses on your way back to a normal life without CPPS. You are not alone and it is possible to overcome this challenge!