Chamber and committees

Carole Coutts submission of 19 July 2021

PE1865/QQ - Suspend all surgical mesh and fixation devices

I woke from my hernia mesh operation with titanium coils in sheer agony, every breath in and out was agonistic and I hoped that death would come quickly. I hope this petition stops others going through the intense pain and suffering I went through and still endure.  Despite recommendations from The Baroness Cumberledge Review (BCR) nothing much seems to progress. I attended the BCR Meetings, met with Nicola Sturgeon, Catherine Calderwood and Jeanne Freeman who empathised and offered their support to hernia meshed people.

After over 8 years of missed diagnosis of my extremely rare hernia in the Petit Inferior/Superior Triangle area of my back, caused by a rare complication from post cancer breast reconstruction using my latissimus dorsi muscle. I wasn’t given fully informed consent, the full remit of potential complications wasn’t divulged to me. Mesh adversely affects my life, I can’t work and I can’t lift my grandchildren up so I’ve missed out on caring for them. My pain is aggravated by normal activities; walking, housework, light gardening, driving etc.

My bowel herniated out through my back, pushing past my kidney. I was advised the best way to repair the hernia was to insert mesh. I asked questions, my consultant said he’d use a new improved mesh with a special coating to prevent it from adhering to internal organs. (FACT: The coating rapidly deteriorates! The mesh has frayed edges which become brittle and are known to migrate.) He assured me all would be well and I’d have 3 or 4 staples to hold the mesh. I woke in the recovery room in acute agony, they overdosed me on morphine! My Liver Function Tests (LFT’s) were sky high due to the opioids and/or anaesthesia so the ward reduced my pain relief to less than I was on pre-operatively.  I have 40+ Protacks holding my POLYESTER mesh. It’s 20cm x 15cm, extremely close to my spine, diaphragm and ribs. I was in acute pain for a long time and still suffer from constant chronic pain. At a follow-up appointment my consultant became angry, denying that my pain and stomach issues could be due to the mesh or to the operation.

I have daily pain in my back at the herniated area, ribs and spine. I’ve developed coeliac syndrome, rashes, extremely dry skin, dry eyes, stomach problems, poor memory, brain fog, profound sweats, shivers, frequent UTI’s, frequent raised LFT’s, ganglions on one wrist and both ankles, difficulty sleeping, constantly tired, depression, anxiety, painful joints, neuropathy in all limbs, hands and face, constant gnawing and sharp, burning, stabbing pains in my back and ribs. Random sharp electric shock pains in my back, stomach, legs and feet and the herniated area. I continue with stomach issues with no explanation that makes sense apart from my digestive system blocks up then after episodes of pain it clears. I developed prolapse due to the stomach issues. My gynaecologist told me, “I have never used mesh, only tape.” I told her I know mesh is also called tape. She then said that she only uses the patient’s own tissues.  She’d clearly forgotten she said she uses tape!  I also have another autoimmune illness.

Polyester mesh shrinks significantly after it is implanted and it is weaker than Protacks so it can get torn away from them. I believe I have numerous tears due to the searing, hot, stabbing pains I get from time to time. I worry that spinal damage may occur and wonder if I might face reduced mobility in the future.

Within months after the hernia mesh operation I was emergency admitted to hospital. A CT scan showed the mesh, they told me they could do nothing to help me.  I’ve seen many GPs and consultants locally who had no knowledge of my rare hernia nor of hernia mesh complications.  A psychiatrist diagnosed mild depression due to pain whilst my GP insisted I was imagining the pain. I’ve been made to feel I’m an expensive burden to the NHS due to costs of the drugs I’m on. I’ve had NHS Pain Clinic, Psychiatry, Physiotherapy and countless appointments with GPs. Nobody appears to have the knowledge nor is willing to take ownership of my complex case as they describe it.

The hernia was seen on a private MRI, mesh on the NHS CT scan and Protacks on the NHS X-Ray. My GP recently discussed my case with other GPs. She said none of them knew much about mesh. She tried referring me to the Scottish Complex Mesh Surgical Service and I also emailed them. They refused my referral as they only accept gynaecological referrals. They told my GP the same, she has referred me to a General Surgeon locally. I need to be assessed by consultants who are knowledgeable about the complications relating to my rare hernia mesh repair.