Monday, 13 April 2015

My Pain Journey

Anyone who has experienced a pain that cannot be explained has my sympathy.
There is very little I can imagine that is more frustrating and hopeless.  I can say this with a degree of authority because I find myself in that very situation.
Since 2012 I have experienced abdominal pain - it started as a mild cramping in the middle of my monthly cycle and slowly got more bothersome, then moved to painful and in the last 10 months has shifted to agonising. 
At the beginning, I wrote it off as being part of the joys of pre-menopause (a term I was joyfully labelled with by an ecstatic female GP when I was a youthful 35 and seeking assistance for a female issue) but after a while it got worse and so I made an appointment to see my GP.
An ultrasound scan, blood tests and a couple of appointments later I was given the totally unhelpful and altogether too widely applied diagnosis of Irritable Bowel Syndrome - or IBS to its friends.
At the time, I though this was great - I had a stressful job, the pain wasn't so bad and I could probably manage it with a bit of yoga and a small adjustment to my diet.  
I was very, very wrong.
Fast forward to 2014 and I could be found doubled up in pain at 3am most mornings, and could find nothing to ease the pain.  It came and went at its own pace - always early in the morning, waking me up, but never stayed past midday.  I continued to blame my job and sky-high stress levels and tried to manage my life the best that I could.
But the pain carried on getting worse and eventually, in October last year my husband dragged me back to the doctors and insisted that they do something.  By this stage, I was exhausted, depressed and desperate.
A different GP this time (the joys of a locum-heavy surgery) and the earth-shattering revelation that the pain was not in the right place for IBS!  Focussed mainly at the edge of my left hip bone, the GP was certain this was not characteristic of IBS and referred me for yet another ultrasound scan.
The scan was clear - the poor woman who did the scan was rather disconcerted when I cried at her positive news as by this stage, I would have given anything for a diagnosis of something that could be fixed.
Back to the GP (a different one again!) and this time, a referral to a gynaecologist.  This felt like proper progress as I was certain by now that my abdomen must surely be choked with severe endometriosis or a huge cyst thanks to my reliably supportive and medically brilliant friend Google.
In January 2015, I saw the gynaecologist and she conducted an examination and found a mass - hooray!!!!!  I was so elated!!  An actual thing that was causing the pain!!  It was between my bladder and my womb and so the next step was a laparoscopy and a cystoscopy - with a 4 months waiting time.  Happy face gone.
In the end, my husband persuaded me to have the procedures done at a private hospital - and we justified the huge cost as being worthwhile as it would give me my life back.
On the day of the surgery (23rd March), the gynaecologist/surgeon asked me to sign a form giving her permission to remove anything that she found whilst I was in theatre and I happily reaffirmed my wish that she take out as many ovaries, fallopian tubes, wombs, cysts, endometrial adhesions as she needed to to get me fixed.  I practically sprinted to the operating suite and held out my hand for the anaesthetic without a moments hesitation.
An hour later, my hopes were shattered.  As I came around, the surgeon explained that she could find nothing at all to account for my pain.  My organs were clear of any trace of endometriosis, no cysts and no sign of the "mass" that she has felt during the previous examination.  I cried.  For days. No solution, no way forward and a huge debt to pay for the surgery to add insult to injury.
Three weeks on and I am in pain every morning.  I am exhausted and struggling to see any light at the end of my tunnel.  
A colonoscopy and referral to a pelvic pain clinic are the next steps now but with a waiting time of another few months, there seems to be little reason to smile.
So.....what next?

Googling my symptoms highlights the thousands of people all over the world who are desperate for an answer just like me.  Medical forums are full of people looking for something that will help them.  I am hoping that this site will provide a place for people who suffer from chronic pain to come together and share their stories, find support and finally feel that they are not alone in their suffering.  I know that I need all of those things.  If you are reading this, do you need them too?

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