My CPPS Journey: I got Discharged From Physio!

Over the past few years I’ve spoken a lot about my journey with Chronic Pelvic Pain Syndrome (CPPS). Today I’m feeling very reflective and grateful, as on Friday I had my last physio appointment.

It feels like such an accomplishment that 10 years after that first flare up, my pain has improved so hugely. I truly never imagined it was possible.

When I look back at my teenage years, it’s hard to believe how hopeless I felt. There were often times when the pain was so bad I couldn’t walk, get dressed, sit down or even shuffle slightly in my chair without being in absolute agony. I genuinely could not imagine ever living a life that wasn’t dictated by pain.

For years I was living in constant fear of my own body, but still clung onto a vague hope that if I ignored it for long enough, it would go away. I never imagined that I would ever be strong enough to seek help, and I really believed that if I did, I would be met with the crushing blow that nothing could be done about it.

But I’m so thankful that 7 years on, I finally plucked up the courage to do it. And on summoning that courage, I found out that actually, about 15% of women experience some kind of pelvic pain, making it even more common than asthma. Although in my case it was caused by nerve damage and couldn’t be ‘cured’, it could be treated. And that treatment has been such an incredible experience for me.

The combination of medication and around a year of physio has improved my pain levels so much. I have learnt loads about my body and how it had adapted to being in pain. The physical changes that happened in response to me fearing pain were actually causing half of the problem – for years my body was unable to relax and heal. It fascinates me that the way I hold my muscles is not normal, and learning how to actively combat this has helped so much. Although it’s something I still have to consciously work on, physio has helped my awareness improve massively, and I finally feel in control of my body.

If I could give two pieces of advice based on my experience, it would be this:

  1. Seek help. And don’t give up until somebody listens to you. You don’t have to ‘just live with it’, and even if what you’re dealing with can’t be cured, there are things that can be done to help with pain management. Even if it’s something you’ve been putting up with for years, it’s never too late to reach out.
  2. Be aware of the effects saddles can have. Whether that be bike saddles, horse saddles or anything else, look after your pelvic region!! It blows my mind that we aren’t taught anywhere about the dangers of using saddles. Being unaware of the risks changed my life completely, and the effects are still very much present even 10 years later.

Above all else, this long journey has taught me to put myself first, and address my worries head-on, whether these are worries about my physical or mental health or anything else in life. However scary it may be, learning to be proactive about you health and wellbeing is an incredibly liberating and empowering experience.

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