This week I attended the John Radcliffe Hospital in Oxford, England. I gratefully drove the hour or so there from my home in Watford, I queued for forty five minutes to gain entry into their car park and was awarded with an early consultation with surgical Gynaecologist, Dr Natalie Price.
Now, I had been warned that Doctor Price was pro mesh and wouldn’t remove mesh unless it was a private affair or patients meet the strict NHS removal criteria. This being that the plastic needs to be physically cutting through your organs in what is termed as ‘mesh erosion’ and the doctors need to be able to see it.
Knowing this and being an NHS patient I decided to arrive prepared. I entered my long awaited consultation armed with a statement of my patient journey. I also had all the letters which the statement alluded to. My aim was to show that since the TVT implantation I have had bladder pain and infection and that it has taken over my life.
I didn’t want to be accused to having just heard about mesh issues and was ‘jumping on the bandwagon’ because of media insurance claim cases. As I just want my life back and only have the NHS to help me I must tread carefully.
One of the major problems with the NHS Health Care System is that hospitals are not able to see what medical data another hospital has on you or view your GP notes. Patients have to give their own history and list what they have already had investigated within the fifteen minute time slot.
To save time during the consultation and to ensure I didn’t miss anything out (I was anxious and bound to babble) I listed the journey my bladder has already taken…it resembled War&Peace and was edited to the basics to ensure it could be read. I’ll put it at the end of this blog piece.
Of course to keep it simple I didn’t correlate it with my loss of earnings, social status, self esteem and emotional health. I didn’t even correlate it with change of professions to suit the illness as it’s progressed. I didn’t list the music I no longer play with my band. I didn’t list the boyfriends I’d lost because I couldn’t leave the house or ride them like I used to.
I also felt I shouldn’t mention the problems one has attempting to claim disability or the problems I’ve had finding a pad to wear that doesn’t cause outer cysts or how much the itching distracts me whenever I’m trying to have a conversation.
The additional pain in my legs or back was not mentioned as I know this could be attributed to other illnesses I have in Elhers Danlos – although I’m pretty sure that the numbness in my arms and legs will improve when I can walk again.
Tempted I didn’t add up the costs of all the medical intervention I’ve had to look into my bladder against them just admitting the TVT could be a problem at the start and giving me the colpolspension required. After all the TVT was preferred because it saved two hours surgery time…although already known to cause problems.
I couldn’t fault Dr Natalie Price. I liked her demeanour and her attempt to get me to measure my expectations of what could be done on the NHS. I wish I wasn’t poor. From what I understand it would cost in the region of £50,000 to have done privately.
Dr Price examined me and felt that I do have mesh erosion but it must be definite and she must convince the other surgeons that my life would be improved by having it removed as often a patient is ‘worse off’ after TVT removal. I asked her what ‘worse off ‘ would look like. I realise that was unfair of me.
So, now more waiting for the wheels of the NHS to move to organise scans and another cystoscopy at Oxford for me.
For those of you reading this with no previous knowledge of TVT mesh it is a polypropylene plastic which is used instead of organic material in surgery.
Thanks for reading.
Below is long and boring list of the doctors and hospitals involved so far.
This is my current mesh journey:
May 2004 My Rheumatologist, Prof. Graham from University College Hospital London, wrote to Mr Hextal to request a colposuspension (regular operation used to help women with bladder prolapse, usually after childbirth).
August 2004 Mr Hextal performed cystoscopy (under General Anaesthesia) and laser treatment for endometriosis and to look at the inside of the bladder.
In April 2005 under General Anaesthesia a Hysterectomy was performed and TVT implanted by Mr Hextal at Watford General Hospital but is based at St Albans City Hospital. I woke up after surgery with a very tight sensation across my groin and complained. An ultrasound scan of my bladder was done on the ward before discharge, it showed incomplete emptying. I was given antibiotics and assured things would settle.
June 2005 At my follow up with Mr Hextal I saw a registrar who dismissed my pelvic pain, bladder pain and my assertion that my clitoris did not the same as it did by telling me, ‘It all looks very pretty down there.’ This made me suffer in silence for a while.
GP refers me as I keep getting urinary tract infections and blood in my urine.
February 2007 I see the urodynamic nurse under Mr Hextal at St. Albans City Hospital.
April 2007. I see gynaecology at St. Albans for bladder and groin pain, they suggest physiotherapy. I undertake physiotherapy.
My Rheumatologist writes to Mr Hextal asking for information on my Gynaecological operation because of my continued bladder and pelvic pain. Prof Graham doesn’t mince his words and suggests that the operation Mr Hextal has done has failed.
June 2007. I see gynaecology Mr Hextal St. Albans City Hospital and they suggest Soliferacin or Oxybutynin for continual bladder pain and difficulty in urinating. I continue with physiotherapy.
August 2008. I have cystoscopy under General Anaesthesia at Watford General Hospital to investigate the bladder pain and blood in my urine. Mr Hextal is unable to find the cause of my bladder pain or inflammation. I am put on antibiotics long term.
September 2008. I have scan of bladder US Urinary tract (for blood in urine and pain) – I’m told that all is okay. GP tells me that I can be treated privately by a college who specialises in bladder complaints at the Spire Bushey Hospital.
GP refers me to Bushey Spire Hospital – Mrs M Rushton, bladder specialist.
January 2009 Cystoscopy and bladder massage to stop the bladder from being in spasm and calm it down, I was told this would relive the tension I felt – as my bladder had gotten into a ‘bad cycle’. This actually worked for months.
December 2009 – UTIs continue although still on antibiotics and bladder pain, problems with urination and more.
January 2010 Referred by GP to The Clementine Churchill Hospital in Harrow, London. I saw Dr Agarwal for bladder pain with blood in urine – only now no infection was being found. Another cystoscopy and bladder biopsy. Dr Agarwal diagnoses me with Interstitial Cystitis and gives me diet sheets to follow to help my symptoms.
Thankful to have some answers I followed the diet sheets religiously, but they do not help much, and symptoms continue.
September 2011. I have a scan of Abdomen and US transvaginal scan at Hillingdon – GP request because of constant UTIs, blood in urine and pelvic pain. I’m given Diazepam in attempt to calm the bladder down. I’m told everything is fine no cause of bladder pain.
February 2012 My GP referred me back to Mr Hextal at St. Albans City Hospital/Hemel Hempstead.
However, at that time because I felt they were not listening to me, I asked to be referred elsewhere so GP referred me to Prof. Linda Cardozo MD at Kings College Hospital, London for bladder investigations.
August 2012 – November 2013
Prof. Linda Cardozo organised for me to have US transvaginal scans, physio, diet help and urodynamics tests. I saw a range of professionals and had a cystoscopy under General Anaesthetic and bladder biopsy.
The results can only be viewed with suspicion as Prof. Cardozo describes a womb with no sign of mesh erosion. I cannot comment on whether she could see mesh erosion but I do know that a hysterectomy does remove the womb permanently.
No cause could be found for blood in urine or my bladder pain at Kings College Hospital. Although Specialist Physiotherapist, Janet O’Toole and the Urogynaecology Nurse Rose Orako both felt that my symptoms did not correlate with Interstitial Cystitis still no one mentioned that the mesh could be the problem.
April 2014 First cycle of Cyclic Vomiting Syndrome found me with antibiotic sensitive ecoli in my bladder on admission to Watford General hospital. Under the endocrine dept my bladder issues then became secondary to weight loss, jaw and ear pain, gout, rectum dysfunction and vomiting with major chest pain/lung disease. *I decide to take myself off the antibiotics – they weren’t helping me keep clear of infection and I needed to decrease my medication and opiate use.
March 2015. GP referred me back to The Clementine Churchill Hospital in Harrow to investigate ongoing bladder pain, blood in urine, outbreak of nasty cysts and insane outer vaginal itching with no cause. I was under the care of Mr Kamal Iskandar who was able to prescribe Lidocaine gel for the itching.
Unfortunately, I was found to be too poorly to be operated on at this hospital as they have no A&E and I was referred back to St Albans in November 2017 after another US transvaginal scan at request of GP in November 2015 and further UTIs.
I was released from Watford General to the care of University College Hospital London to investigate from March 2016 to Sept 2018 I was under Dr Natalia Zarate-Lopez. It was felt that my constipation could be contributing to my bladder issues. My bowel was investigated, Dyssynergia and slow transit diagnosed and bowel retaining undertaken. Blood is found in my bowel movements and urine.
November 2017. Under Mr Hextal at St. Albans City Hospital I had more urodynamics tests under Nurse led Gynae Clinic. A cystoscopy under spinal anaesthetic, cyst removal and biopsy showed no real reason for bladder pain but again showed inflammation.
November 2018 Mr Hextal performed laparoscopy under spinal anaesthetic to check the TVT but no erosion could be seen of my bladder as the TVT couldn’t be seen, my ovaries had cysts on so he was able to operate on these.
April 2019 After an attempt at installations of medication directly into the bladder (very, very painful) and more urodynamic tests, at a consultation with Mr Hextal, I provided evidence that my Rheumatologist had requested another operation other than the TVT with the hysterectomy (back in 2004) and that the problems I’d had ever since could and should have been attributed to the TVT. Dr Hextal referred me to Oxford.
January 2020 Dr Natalie Price at the John Radcliffe Hospital in Oxford. To start investigations into the bladder issues I am having and will look into whether the mesh can now be removed.