Iona Winter

First, do no harm. Isn’t that what medicine dictates?

Twelve years ago, I had a TVT-O (transvaginal tape through the obturator region) implanted to assist my bladder, after decades of gynaecological surgeries. Last year the mesh took many hours to be removed by two specialist surgeons. 

After a decade of destruction, my body is in the same pain as it was prior to mesh removal. I figure there’s been a truckload of damage, and it may need time to heal, but most days I experience crippling pain by mid-afternoon.

It’s difficult to convey how much pain, because let’s face it, women’s pain has been minimised for centuries. Nobody wants to hear about it. But I’m hoping to give some insight into this phenomenon, which isn’t really a phenomenon, just a medical eff up that’s involved experimentation on women, and now men with hernia repairs.

Imagine, if you can, being impaled on a medieval spike through your privates (vagina or testicles) throughout your day and without respite. Enough said. If you want more gore, it’s easy enough to find innumerable reports of the painful and debilitating symptoms associated with a vaginal mesh injury. Consider this metaphor an aperitif. 

Yes, yes, I could rant for eons about my experiences of medical misogyny, since the first diagnosis of low-grade cervical cancer when I was 18. That went on for twenty years, and I’ve had to fight for my rights in the health arena ever since, along with the rights of others I care about. 

I’ll try to curb this rant where possible. But if you’re still with me, thanks for bearing with.

There is an international mesh scandal. I know the words are evocative, but it’s a scandal nonetheless. 

Vaginal mesh is created by pharmaceutical companies, more interested in making money than conducting thorough and long-term evidence-based research. Mesh is still sold as a quick, easy and cheap alternative, meaning, in a nutshell, more surgeries can be undertaken in a day. As opposed to using body tissue, like they did in the old days — where interestingly, that kind of surgery had significantly less post-operative complications.  

There’s very little data collection around vaginal mesh injuries, predominantly because surgeons and doctors are not mandated to report the adverse reactions of any mesh implants.

You might want to read that line again.

Unfortunately, for the majority of patients, complications come later. Let’s face it, we’re usually sent away with the repeated refrain, “Most women don’t have any problems with mesh.” Since my recent removal surgery, some health professionals still attest to this. It’s like they’re actually saying, ‘Let’s blame you further, because there’s obviously something wrong with you that meant it didn’t bloody work.’

Most people, with any measure of integrity, know that women’s issues are frequently ignored by the medical profession. We’re told we are neurotic, depressed, catastrophising, or as someone once said to me “malingering”, when nothing is further from the truth. How very 1880’s of them. There, there dearie, take a pill for it and off you trot. Or go and have a cup of tea and a lie down. Go on.  

I’ll just cough into my hand at this point and call, koretake (bullshit). 

Surgeons who remove TVT-O mesh can’t guarantee that it’s all out, especially if you’re like me and have already had a resection because the mesh was too tight (it shrinks by up to 35%) and my body was rejecting it – aka I could feel it beneath the surface of my skin. Those loose ends have had a great time wafting around my insides for years. 

Despite New Zealand being one of the countries that stopped using TVT-O mesh, there is still very little acknowledgement from the medical profession, and going through our ACC system can be a nightmare, despite the stellar work from Mesh Down Under. 

My guess as to why it was stopped being used? The powers that be didn’t want a repeat of the ‘Unfortunate Experiment’ at National Women’s Hospital.

On a good day I feel slightly vindicated, because it appears my theories were right: pudendal and obturator nerve damage. For years I’ve ticked all the boxes, and have been harping on about it — not that anybody listened to my theories before the surgery last year. Most of the mesh was removed, sans frayed ends, but then I learned it had been incorrectly inserted in 2011 and the surgeons had had to dig around for hours to try and find it. Some people, shall we say, are now all ears. 

Most of us mesh-injured people are exhausted from our full-time jobs battling the system. A system which continues to ignore us. To be honest I’m done with having to ask for help, the endless self-advocacy, and the invisibility of this injury. On a bad day, I fantasise about letting my anger out fully, whilst living with this medical eff up, and imagine whole cities would likely be demolished by its power. 

There you go. I tried not to rant, but I have. 

If you’d like to know more, or have someone in your life who is affected, please check out the following resources.

Mesh Down Under http://meshdownunder.co.nz

Sling the Mesh https://slingthemeshcampaign.org

Mesh News Desk https://www.meshmedicaldevicenewsdesk.com