Henri Astier is a journalist at the BBC. He recently published an open and honest article about his recovery from pelvic pain. Read Henri’s article here
This is the follow up interview that I held with Henri. The aim was to dig a little deeper into fundamental aspects of his recovery. I felt several key questions weren’t covered in the BBC article.
I saw Henri for a one initial Skype and 4 face to face sessions over a year from April 2017 to April 2018
In your BBC article you say that you have recovered from pelvic pain. Do you still have to continue with all of your self-care to ensure your symptoms don’t return? Is it just about keeping it at bay?
I meditate and do my stretches every day, but not as religiously as before – if I’m busy I might have a short, 15-minute meditation in the morning, for instance. Swimming is unchanged: 40 minutes twice a week.
But crucially, I don’t regard these activities as a way to keep the symptoms at bay. My pelvic pain has taught me not to fear my own body. I now see that a sense of vulnerability was part of the problem: being on guard makes you tense up, and exacerbates any pain. I see my self-care as healthy living, a way of protecting myself generally rather staving off any particular affliction.
The pain and recovery have taken me to a better place than I was before. I now have a sense of control over how my body feels.
You mentioned you kept a pain journal/diary. Were there any other props/aids that you used in your recovery? Are these all still in place too?
The whole issue has been a revelation. Before experiencing pelvic pain, I would not have understood what you meant by “props”. If a part of my body was hurting, clearly something beyond my control was wrong with it – maybe some inflammation or damage to tissue. And only a physical remedy could bring relief. Both the problem and the cure came from outside. It seemed absurd to believe that I could actively contribute anything to either.
So I never thought of the diary as a “prop”. It was a way of recording the ups and downs of my roving aches. The aim was to identify the triggers and find out whether any particular actions I took made things better over time. I never found the triggers – food and drink turned out to be irrelevant. But, using a 1-5 pain scale, I was able to document the fact I was on the right track with meditation. The peaks were getting gradually lower and further apart.
My approach to soft cushions and tight briefs was different: they were meant as aids that brought direct relief. I was sure that this was due to their physical properties – softness for bum, firm support for the genitals. So when you told me that the comfort was in fact mental – they made me feel more in control – I was sceptical. But I trusted you and I was not going to waste my money by ignoring your advice. So as you suggested I let go of these aids, and was shocked to see that you were right. They were security blankets! My trusty diary showed that I continued to get better after ditching them.
But you were not finished. In due course you argued that the diary – which I was still keeping 15 months after the onset of the pain – was one of those props that had outlived its usefulness: It kept my mind focused on it and needed discarding. I stopped waking up every morning wondering if I was on a 2.5 or a 3. I was, quite literally in uncharted territory, and was shocked to see that I was fine there.
Weird as it may seem, a key part in overcoming pelvic pain is no longer identifying primarily as a sufferer.
Research has shown that sex is the most common cause of flare ups and symptoms in pelvic pain. Read here. Was this the same for you and how did this affect you?
The issue of sex – in this context as in others – is a confusing one. The first urologist I saw pronounced that whatever was wrong with me could be resolved by frequent ejaculations. So for her, sex was part of the answer, not the problem.
In fact I did not find that it was a factor in any way. Of course, pelvic pain has an impact on your sex life. When an organ hurts you don’t want to use it. And as I got better sex regained its appeal. Pain affected my sexual activity, but I don’t think the reverse was true.
Many patients are told they will just have to put up with this for the rest of their lives, that there is nothing that can be done. What do you say in response to that?
When you have pelvic pain you cannot imagine ever being well again. It is particularly distressing when this self-diagnosis is reinforced by doctors. Like many sufferers, I was told by my urologist that there was no cure and I would have to live with the pain.
This is as unhelpful as it is wrong: the key to tackling CPPS is to abandon catastrophic thinking, especially when the pain returns after a reprieve. Don’t make too much of it. Pelvic pain does not suddenly vanish: it waxes and wanes. But in my experience it follows a gentle, downward path. Past experience is not fate.
It was John Lennon who expressed this idea best. One of his songs is about a man who has been burned in previous relationships and panics when his present girlfriend appears to have her mind elsewhere: “I was dreaming of the past – and my heart was beating fast – I began to lose control.” In other words: “Oh no! She’s about to leave me, just like the others.”
The song neatly captures both the catastrophic thinking and the recovery. The man snaps out of his doom-laden reverie by looking at what’s in front of him – a loving partner – and acknowledging his own ill-judged feelings: “I didn’t mean to hurt you – I’m sorry that I made you cry… I’m just a jealous guy.”
Meditation did the same thing for me. It put my own fearful imagination at a distance, and made me focus on the life that flows on within and without me.
There are so few success stories online about patients recovering from pelvic pain. Your story has been a shining light for many. Why do you think there are so few stories and how does this impact individuals?
When you go online, as you inevitably do when you’re unwell, virtually all you read about is the distress that this mysterious condition causes. I suppose people mostly use the internet to call for help. When they recover, they’re less likely to share the good news, especially as it involves parts of your body you don’t want to think – much less talk – about.
But it’s important to spread the good news and speak without shame. This is what the writer Tim Parks did with his book Teach Us To Sit Still. His story gave me hope. And I wanted to do my bit to spread that hope.
Do you have a take home message for those still in the midst of their symptoms?
You will read that the drugs don’t work. And it’s true that antibiotics, anti-inflammation pills, opiates, alpha blockers are ineffective against pelvic pain. But it doesn’t matter: you’ve got the painkillers inside you. (this video from David Butler of NOI Group explores the issue further here
This interview took place in November 2018, 4 months after Henri’s article went live on the BBC. He continues to be symptom free. Thank you once again for sharing the story of your recovery with us Henri, it is greatly appreciated. May you provide hope for the many, many sufferers out there