Iona Winter
Eight weeks post-op, a simple procedure to inject Botox into my pelvic floor and I was done with the pain. During a trip to town to see the GP (again), a 40-minute drive with a tennis ball under my nono, I’d felt a strong urge to scream. The pain was unbearable. After the GP I drove for another hour – my current idea of hell (the driving bit) because everything from my vagina down to my foot goes numb. I worked my shift at the library, and when I got home the bloody fire wouldn’t start. Let’s just say the fire copped an earful. Thankfully I live alone.
Pain (of any kind, I’m thinking laterally here), like anger, is a potent force. Invisible pain does not mean that it’s all in our heads. And while I realise it’s difficult for others who are unable to fix it, just stop with the silencing, please.
Since I was eighteen I’ve had whare tangata issues. Now I’m 51 – so that’s most of my life. But I know my tinana. I listen to her, even when I’m told by others that there’s nothing wrong. In over thirty years I’ve had surgery for cervical abnormalities, cancers, to repair vaginal walls, remove sub-urethral and vaginal cysts, repair prolapses, remove half my thyroid, and insert transvaginal tape (TVT-O) through my obturator to loop behind my bladder.
“Yes please Surgeon, I’d absolutely love you to experiment with some polypropylene mesh inside me that will shrink, and likely cause problems for the rest of my life,” said no woman ever.
After the TVT-O was inserted in 2011, I could feel it, literally. I didn’t think that was normal. My bladder issues didn’t improve for long, and the mesh wove its way into my tissues. I managed the ‘pelvic pain’ and tried cortisone injections into my nether regions (which hurt like f*** – imagine that fellas in your testicles – but gave me some relief). When (finally) I was referred back to the hospital, the mesh was deemed ‘palpable’ beneath my skin. It was tight, far too tight, because transvaginal mesh shrinks. Nobody told me about that.
In 2014 it was resected. “That should sort things out.” Now be off with you, you malingering woman.
But the ‘chronic pelvic pain’ banshee continued to scream. Shards of glass ground inside my vagina, I felt impaled on a medieval torture device, where I was then sliced open from groin to butt, unable to sit comfortably (for like years people), with a numbness that travelled from vagina to toes, and don’t get me started about the fatigue.
“It’s because you went through menopause so young. Try oestrogen cream, that will work.” Now shut the f*** up about it, lady.
I’ve had Botox twice. The first time gave me three months pain relief. This time it didn’t. After concerns about my post-op pain levels, I took prescription painkillers, which caused more problems (I’ll spare you the details). I used alternative medications, and had a relaxing bath at a friend’s whare. Signals from bladder and bowel weren’t reliably reaching my brain. I’m a stubborn wahine, but eventually I gave in and am now on medication for neuropathic nerve pain. One thing that works consistently (with zero negative side effects, when I can access and afford it) is a good quality cannabis tincture specifically for this kind of neuropathic pain. But that’s a kōrero for another day.
Simple things, that were a natural part of life, now cripple me. It has affected my job, the unpaid one as a kaituhi and my twelve hours a week in te whare pukapuka. Let’s be frank, it’s impossible to smile at the public when there are shards of glass grinding inside your vagina. Nobody wants to hear that analogy.
I can’t talk about the ACC rejection-fest, but I’m self-funding a trip to Ōtautahi to see a specialist surgeon. Thank the universe for the whānau, friends, and medical professionals who haven’t silenced me – aroha nu nui ki a koutou.
When did it begin? Perhaps it began way back. When wāhine started to be treated like possessions, things to be silenced, feared and experimented upon. When our beautiful whare tangata were no longer precious and sacred, but ravaged and left bleeding. Not the whenua blood that nourishes the generations to come, but a blood that coats the earth with viscous reminders of what has gone before.
But that too is a kōrero for another day.
Iona Winter (Waitaha/Kāi Tahu/Pākehā) lives on the East Otago Coast. She writes in hybrid forms, has authored two collections: Te Hau Kāika (2019), then the wind came (2018), and is currently working on a novella. Iona’s website is here.
Also by Iona Winter on Corpus:
Kia ora e hoa. I hear. I press the palm of my mind to your universe of pain, hearing you speak. I bow my head. There are tears. There is a river.
Ka nui taku aroha ki a koe e hoa. Thank you for your beautiful kupu, and for hearing me x
I am so sorry this happened to you.
I am a doctor and it shouldn’t have happened. When it happened you should have been heard by the people you went to for help.
The use of pelvic mesh here, and internationally is a great stain on the practice of medicine.
I hope you find your healing.
Go well.
Tēnā koe Joanne. Thank you for your aroha, and for hearing me too x
Kia ora Iona, I published a study of NZ women’s lived experience of mesh complications before the recent MOH/VUW report. Check it out here https://rdcu.be/b3GEN I’d be happy to talk with you about your mesh experience and see if I can be of any help in you finding a way forward. Nga mihi, Jacqui
Hi Jacqueline im a seriously injured mesh survivor in New Zealand are you a doctor my story was in the Australian Senate Inquiry Google my Name i dont know how to contact you
Jacqui Scott
Tēnā koe Jacqui, thanks for responding. I heard of your wonderful study via the Mesh Down Under support group, and thank you for publishing this too – more voices amplified! I really appreciate your offer for kōrero too. Kā mihi maioha, Iona x
I am so sorry to have read what you have been through. No woman should have to go through agony like this. I hope and pray you will receive the medical help you need to be able to improve your health. Stay strong and don’t give up. Wellness is out there for you. God bless and keep your spirits up.
Kia ora Heather, thanks so much for responding and for your kind thoughts too. Kā mihi nui x
Hi Iona I to am a mesh injured woman i live in Napier would love to chat to you about what we have both been through
Jacqui Scott
Tēnā koe Jacqui, thanks for responding. Yes, I’d love to kōrero too. Can you please send me an email: ionawaitaha@gmail.com and let’s hatch a plan. The Mesh Down Under Facebook support group is also very supportive (if you’re not already on there). Kā mihi nui, Iona x
Kia ora Iona,
it really hits home to hear your story. Invisible suffering is the most difficult, and the need to blame the victim is too prevalent.
Kia kaha for emerging solutions.
Tēnā koe Faye, for your awhi and aroha x