A patient’s journey with pelvic pain

Real Stories

An (extremely painful) smear test, an ultra sound, a laparoscopy and an MRI scan later and no one was any more the wiser as to what was causing my crippling pelvic pain. Whilst the laparoscopy uncovered ‘minimal’ endometriosis behind my womb, and the MRI revealed ‘polycystic tendencies’ on my ovaries, neither could apparently be attributed to the level and nature of discomfort I was experiencing.  

And discomfort was putting it lightly: to put it bluntly, sex felt like a form of torture every time I mustered up the courage to attempt it. From the stabbing sensation across my lower abdomen to the deep, dull ache radiating from the top of my inner thigh to my back, my pelvis felt like a hotbed of high-voltage pressure ready to implode at any moment. There was stinging and burning mixed with spasms and cramps. My coccyx was being repeatedly battered and bruised at the same time as my bladder was enduring punch after punch. I was in excruciating agony. Every. Single. Time. I’ve always considered myself to have quite a high pain threshold, but I’ll be the first to admit that I could have easily passed out from the pain. Gritting my teeth and bearing it just wasn’t an option.  

Doctors said I’d exhausted all possible exploratory options. Each specialist – and I’d seen a few – told me in their own way we had ’come to the end of the road’ in their area of expertise; I was hitting brick wall after brick wall. All that was left to do was to ‘manage the pain’.  

But how can you manage something – anything – when you don’t know where it comes from, or why? ‘Pain management’ sounded to me like sticking a plaster over the wound – a plaster that may or may not stick – without really getting to the root of the problem and treating it at its source. At best, we’d be attempting to subdue the symptoms, most likely with anti-depressants to ‘hopefully’ block the pain signals to my brain (didn’t work). 

That’s when I started doing my own research into alternative treatment options, which led me to discover ‘pelvic floor physiotherapy’ – something I never knew existed. It sounded daunting, and very up-close-and-personal, but by this point that was the least of my worries. I just wanted answers. Now looking back? I wish I had discovered it sooner.  

After studying how I walked and how I stood, and how I presented during an internal examination (which was nothing like previous hellish experiences), a pelvic floor physiotherapist confirmed my pelvic floor muscles – specifically my pubococcygeous and illicoccygeous muscles on the right side – were overactive. They were too tight, and overcompensating for weaker muscles in the area that weren’t pulling their weight as a result. Essentially, my pelvic floor muscles weren’t providing the balanced support that my pelvis – and everything in it (that’s a lot of important stuff) – needed. No wonder anything that tried to disrupt this imbalance left me in agony.   
 
What I was feeling was an actual thing! It had a NAME.  

Working on these tight areas left me feeling lighter, as though an invisible weight chained around my pelvis had been loosened. Everyday niggles and aches that I’d come to think were just ‘me’ had eased: I could sit down my desk chair at work without bracing myself for impact, and I didn’t have to psyche myself up for the shooting sensations I sometimes experienced when I went to the loo. I had no idea I didn’t have to live with these discomforts. I didn’t even realise I was, until they were gone. 

I currently have pelvic floor physio sessions once every two weeks, consisting of both internal and external manual therapy. A combination of stretching and strengthening exercises twice a day, coupled with breathing techniques, ensure I keep on top of my rehab at home, just as if I was treating an injury. The aim is to retrain my pelvic floor muscles to work together properly, un-doing what they taught themselves to be the ‘norm’.  

And although sex is still a work in progress, progress has actually be made – that’s a big deal. I’m learning to listen to my body and understand its limits so that I can push myself that little bit further next time. There’s plenty of tips, tricks and incredible inventions being discovered every day to help intercourse become as comfortable as possible for people living with pelvic pain. CBD oil and CBD suppositories, for example, give the muscles a helping hand to relax, right where it’s needed.   

As soon as I left my very first pelvic floor physio appointment, I burst into tears. This time, I wasn’t crying out of frustration like I did when my GP sent me on my way with a pack of tissues and a raise of her eyebrows. I wasn’t crying out of hopelessness like I did when a pain management consultant gave me a sympathetic look and a shrug of the shoulders. This time, I was in tears of relief. Someone had finally listened to me – really listened. They understood instantly what I had been trying to put into words for so many other healthcare specialists up until that point, but to no avail. We had a plan to tackle the pain head-on, together. For the first time in 3 years, there was light at the end of the tunnel.  

I wasn’t ignored, dismissed, or patronised. My pain had been acknowledged as very much real, with a very real reason behind it. It wasn’t ‘all in my head’. Someone finally got it.  

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