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  • Writer's pictureSarah Rose

My Story

I experienced pelvic pain as a child only for it to disappear and return when I turned 18.

I grew up in Belfast in the early 90s, so when a child complained of unexplained bladder pain I wasn't taken seriously, there were far more serious things going on. Women's health was not something people were talking about, health was an after thought when we didn't even have peace, let alone a government.

When it reappeared its ugly head I tried unsuccessfully to get help. Long two year waiting lists coupled with greying male urologist who blamed my pain on the loss of my virginity up until I was 20 (THE HORROR A SEXUALLY ACTIVE 20 YEAR OLD WOMAN). Made me feel worthless, hopeless and unimportant. My confidence was zero, I was not worthy, I just had to live with this pain and carry on.

Me, aged 23 at the Royal Crescent in Bath.

When I moved to Bath, England for university aged 23, I was encouraged to look into my condition there. England was talked about as if it was revolutionary, even though we shared the same NHS they were light years ahead. This was only further confounded when my PAPER notes (as NI's NHS computer system isn't compatible with the computer system in England) took 6 months to arrive. Unfortunately in Bath I was met with the same issues of grey old consultants, except in this case they didn't blame the fact I had a boyfriend, they just blamed my age and assumed I must have a STD. Finally after I had my cystoscopy I took my results and medical paper notes and paid privately to see a specialist in London. It was here that I was diagnosed with IC and was put on pain medication for the first time - amitryptilene. The pain was so bad at this point I was up 11 times a night to pee. You've no idea how much that little medication meant to me.

So now I had an IC diagnosis I could start treatment, right? Well, I moved back to Belfast and it would it take another 18 months before I received my first installation. And boy they were hell, the pain was indescribable. Having a catheter inserted was akin to setting my pelvic area on fire. I struggled through 6 installations but was left recoiling in a terrible flare after each one. It was from this that I had an assessment by my specialist and was undiagnosed with IC and re-diagnosed with Global PFD. It would be another 9 months until I got my first PT appointment and it was official, I had Pelvic Floor Dysfunction.

Me & the Ernie dog

Now I am really only beginning my pelvic pain journey, my physio sessions have helped but in-between I have suffered horrible flares. It's hard dealing with an illness where there is little awareness, I feel I have to carry my consultant diagnosis letter with me to every routine doctor appointment to prove it is real, you'd be amazed by even now with a diagnosis how many in the medical profession have point blank told me that my condition doesn't exist. I'm currently on a new waiting list to see a pelvic pain specialist, that is my next step.

I am just trying to struggle on, hold down a full-time job, spend my weekends and evenings in bed recuperating, I'm planning a wedding and I'm a mama to the most beautiful rescue dog, but this is really hard. That's why I'm doing this, to connect and engage and most importantly HELP any other gal out there who is going through this.

You are not alone, I believe you.

You deserve compassion, validation and treatment.

Together let's fight to make sure gals everywhere get it.

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