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Grace Kilna submission of 7 July 2021

PE1865/DD - Suspend all surgical mesh and fixation devices

I am a 59 year old, female, and strongly oppose any kind of mesh. 11 years ago i had a prolapse, and after referral by my GP and I had mesh inserted. Within 12 months, I also had a bowel prolapse and, was kindly referred again by my GP, and was then given more mesh. I have had one vaginal mesh removed and received no aftercare for approximately 18 months. I have felt, and still do, that no one believes or listens to me except my own GP.

I still have a rectal mesh, I was told it would be a 30 minute operation and that would change my life forever. IT CERTAINLY HAS.

Even after the removal I still live, or should I say exist, in constant pain and discomfort. I can no longer work, as I was dismissed due to ill health (chronic pain). I cannot do any kind of exercise, including walking without severe and debilitating pain. I have no social life and no sex life. I cannot wash unaided, wash my hair, cook a meal. I can’t do anything without severe pain.

Since the mesh has been removed I have found that the pain is getting worse. I also now have brittle asthma, which I was only diagnosed with a few years after having mesh and showed no signs of this throughout my life. I have severe incontinence, and because i cannot wear pads, I cannot leave the house unless I do not have any fluids whilst out and for several hours before I leave the house. I have also had problems with my bowels.

I could go on forever, but quite simply there are not enough words allowed in the submission for me to explain how much and how badly it has affected my life. I am simply begging for the use of all surgical mesh to be stopped, perhaps reference FIRST DO NO HARM! I also feel that there is an immediate need for doctors and health care workers to stand up and admit they were wrong to insert mesh (maybe not knowingly). I think that they should admit to the complications it causes, including the severe pain and disabilities it brings to everyone. They do know now and should be obliged to get us the help we deserve and need.

I have asked various consultants since the beginning of the pain and mesh erosion, which was just several months after insertion, if this could be caused by the mesh. I have always been told NO! So why was I advised to have the mesh removed and now being advised to have the posterior mesh removed if there are no problems with mesh?

I recently attended the new mesh clinic at the Victoria Infirmary and was given several options for my incontinence. I am now awaiting more tests for before they start botox in my vaginal area. I am very nervous and frightened about this. I feel reluctant to get because of complications others have had due to this and the complications I have had with the "Gold Standard Mesh insertion".

However, I didn’t tell the doctor how bad I really felt and, also didn’t mention a lot of the problems that I have. That was for two reasons one being, that I was having probably the best day in in approximately 18 months (maybe slightly dopey as had to take extra painkilkers to manage the journey and expected examination) but mainly because i feel that no one has listened to my problems in the past. So why should I believe that if I tell them my most personal and intimate details that this time I am going to be listened to?

The doctors at the mesh clinic have stated on my medical records that I didn’t turn up for appointments and wasn’t willing to be examined. Firstly I have never missed an appointment but have had many cancelled by them. I have also been sent home without being seen because I felt unwell in the waiting room. She neglected to say that I could not have the examination because I was in really severe pain and couldn’t even climb on the examining table due. I also wasn’t told prior to this that I was to be examined. This was my follow up (which took at least 18 months) appointment after my mesh surgery.

I would also like it to be known that I was in total agreement with the previous pelvic mesh petition by Elaine and Olive. Also last but not least, i would like to ask why the recommendations by Baroness Cumberledge have not been adhered to?