The last few months have been hard. As hard as the last few years? Maybe not. Probably because my expectation level has dropped to 0.01 above zero.
Those that read my blog will know I had a vaginal polypropylene mesh tape implanted in me during a hysterectomy for Endometriosis. I thought it was, and I was told, it was, an inert material designed to hold my bladder up like a sling which would help with the stress incontinence they said I had.
When I woke up from the surgery in 2005 I felt an intense painful tension across my pubis…which I still have. It feels like I need a wee urgently and feels like something is cutting into me.
It feels like cystitis. I moaned about it since..the implanting surgeon gave me medication to ‘relax’ my bladder…as all they could find in my wee samples was blood, just a small amount.
The medication didn’t work and so ensued a fifteen year investigation as to the cause of this blood, pain and urgency. My GP referring me here there and everywhere to try and find the cause. Me becoming sicker and sicker.
I’ve done tons of physio. I’ve done diet restriction, addition and subtraction. I kept a food diary for two years. I kept an activity diary. I analysed every part of my life….and changed it. Including my work – several times – as everything I did seemed to irritate my groin. I did this for years. I eventually became exceptionally ill and was put on an NHS palliative care program.
My daughter got involved, together, through research we found that the TVT mesh that I’d had implanted in 2005 had left women with the symptoms I was complaining of. But, the kicker was, the longer it was left in situ the harder, almost impossible, it was to remove.
It was not designed to be moved.
It was designed to cause a ‘healing’ response from the surrounding tissue and build a tissue mass within my pelvic cavity. It was this mass which would then, in theory, hold the bladder in place. The TVT mesh’s rough edges were designed to irritate and cause the foreign body reaction which hurts us.
So, my lawyer contacted me yesterday to say until I have a doctor who admits my pain is caused by the TVT I have no case. Fifteen years of investigations and lies amount to nothing but exactly what they are.
I think the cost should be counted. I’m sat at home, on full disability, I’m 52 years old.
I was working full time. I’d retrained to become an electrician to be more physical and left modelling behind – I could no longer stand up in the shoes and it got me no where. Nothing worked.
I don’t complain about not being able to walk as I do have Ehlers Danlos but is this is being used as an excuse not to treat me? I got referred by my implanting surgeon for ‘consideration of removal of TVT’ in 2018 after I presented him with evidence of my continued ignored symptoms since 2005.
I’m no closer to removal now than I was in 2018. Further away really, as the removal specialist to which I was referred left the NHS soon after I saw her in Oxford 2019 (with my evidence) and then the hospital discharged me last month as they said they don’t have funds for TVT removal.
I was hoping to get somewhere with lawyers to go private as I know the government is refunding women who have done this. It seems discriminatory that us poor people reliant on the NHS are being pushed to the back of the queue and, as it appears in my case at least, still ignored.
So, no pay out. No removal as yet…Having been discharged from Oxford I’m not even with a consultant gynaecologist. It looks like I’ll be holding on to this torture device for a while longer.
Yeah, I know Matt Hancock apologised to all of us but he just says the right thing for the camera.
Thanks for reading.
On a good note I did submit my first book to a literary agent. At least I can think straight again.