My Nerves and I - Neuropelveology a New Way to Treat Pelvic Pain
I’ve suffered from pelvic nerve pain for five years now, but it’s becoming increasingly difficult to pinpoint the feeling of being free from any form of mild discomfort or searing agony ever since I was a teenager. As a 25-year-old cisgender woman from Ireland, our healthcare services have had numerous scandals over the last few decades relating to treatments for people who identify as female.
We don’t even have transgender healthcare, but that’s a whole other story - one which isn’t mine to tell. I shudder to imagine how Black women and other people of colour with pelvic pain feel in an Irish hospital or consultant’s clinic. As a woman in this country, my pain is consistently taken for granted and ignored, medical gaslighting is rampant and we have one of the lowest amounts of consultants in the EU. Waiting lists are years long, we don’t have a centre of excellence for endometriosis (or any doctor who dedicates their full time to the disease), and our CervicalCheck scandal means that we can’t even trust smear test results anymore. In short, it’s completely normal to panic as a woman in Ireland when you feel the onset of pelvic pain because deep down you know that your journey to finding answers (if you get any) will be long and emotionally draining.
My own experience began when I was 21, after a summer working in San Francisco. I had always struggled with my periods and had unknowingly displayed symptoms of fibromyalgia since the age of 12, but never knew that there could be medical answers. I simply assumed that everyone else had the same aches and pains. After an abusive relationship caused immeasurable stress and negatively affected my physical health, I began having strange nerve pain symptoms in my lower back, legs, and entire pelvis.
Words like burning, aching, electrocution come to mind; with every doctor, your vocabulary becomes your arsenal. Choose the wrong word and you could be ignored or misdiagnosed. Wear the wrong expression on your face and you’ll be dismissed as a hysterical young woman who needs mindfulness, or a dramatic girl who’s just going through some classic “boy trouble”. Cry in the consultation and you’re overly emotional smile and there’s clearly nothing wrong with you. You can’t win, most of the time. That’s not to say that there aren’t well-meaning people working in the medical sector; of course, there are. There are those who desperately want to help you, but don’t have the training or the knowledge to refer you on to someone who does.
Over the course of the next few years, I had every single test imaginable; every scan saw every form of consultant and waited months with zero results or answers. Failed treatments and surgeries in Ireland led me to London for more options (like thousands of other Irish women). I was treated with a lot more respect and was given a prescription for the nerve pain drug Lyrica - which got me through college, at least.
After I begged one doctor back in Dublin for a laparoscopy that I later found out was not carried out properly, an endometriosis specialist on London’s Harley Street referred me to Professor Marc Possover in Zurich. The founder of a rising field of medicine called neuropelveology - the combination of gynecologist and neurology - Professor Possover is famed globally for his groundbreaking work dealing with complex pelvic nerve damage and various syndromes in the area. From bladder disorders like interstitial cystitis, prolapse, incontinence, and sexual dysfunctions to pudendal neuralgia, spinal cord injury, endometriosis, sciatic nerve damage, and tumors; Possover knows that getting a diagnosis is the most important step to finding a treatment.
Prof. Possover created laparoscopic decompression procedures to free trapped nerves, such as the sacral plexus and pudendal nerves, in the pelvis. Laparoscopic surgery is particularly useful in cases of endometriosis, where trained consultants carry out excision surgery to remove tissue and lesions. As a gynecologist, Possover noticed that there were certain pelvic pain conditions that he could not find the answers for with that field of medicine alone, so he turned to neurology. Since then, he transforms the lives of people with endometriosis-related nerve damage.
After assessing me and attempting botox treatment with no signs of improvement, I was offered the laparoscopic decompression surgery as soon as I was available to book. A lot of back and forth with my insurance company ensued, who thankfully agreed to pay the large sum only because the highly specialised procedure was unavailable in Ireland. Another unfair layer in the brick wall of pelvic pain is that money is absolutely everything when it comes to healthcare treatments and achieving relief - it’s a ruthlessly cruel system that punishes minorities and those of a lower economic background. Simply by losing a lottery, a person may not be able to see the right consultant and receive the treatment they so desperately need. I try to always remain aware of how privileged I am that I could even afford to pay for my flight to Zurich to see Professor Possover that day. Having an incredibly supportive family to inject hope back into my future when I was given yet more bad news or to bring me to a counseling session was also a huge blessing.
When he performed my procedure, Professor Possover found massive scar tissue in my pelvis and trapped sacral plexus and pudendal nerves, as well as endometriosis. I was lucky to receive an endometriosis diagnosis in five years; the usual time is nine years in Ireland. Enlarged veins in my pelvis also explain the varicose veins and the change in my pain throughout my menstrual cycle. I am now three months into my surgery recovery; an eight-month battle where the nerve pain worsens progressively for six of those.
It sounds arduous, but I know it will be worth it to know that the pain will gradually subside after years of searching for answers. Luckily, pain patients are some of the most mentally strong people you could find. We’re able to distract our undefeated brains from pain, attempt to work, and have some semblance of a lifestyle and often do this without much complaining (not that they don’t deserve to vent!). The disappointment of failed procedures and inconclusive tests for years on end doesn’t seem to break down the hundreds of people I’ve spoken to who so desperately want a better quality of life.
The mental health toll of pelvic pain should never be underestimated: the pelvis is a site of immense pleasure and pain for those who identify as women, society has tried to dictate it forever (and still does). It’s an area of a person that is emotional in every way, for any gender or sex. For most people, they feel unable to speak about pelvic pain because of stigma, shame, or the discomfort of society. From wanting to explore pleasure or the choice of completing a pregnancy; you can’t find a more vulnerable part of your body. Women will fight for their entire lives to make sure it’s theirs to control.
Pain is a natural part of my life and dealing with chronic illness as a young person means that my perspective is usually different from those around me, but I’ve learned a lot about empathy for the struggles of others as a result of the last five years and about patience. Hopefully, in a year’s time, the reduction in pain will mean that I can essentially start a new type of life, but with the knowledge that having decent health is a gift that only some people cherish (virtually no one my age!). Until something comes along to tamper with it, we all totally take it for granted.
Maybe the global pandemic will change this, but that’s unlikely. We all want to forget the pain once the difficulty passes, which is why writing down my memories has become crucial for me. Constant hospital visits and pitying looks from kind nurses who open your larger than life file, telling my story over and over again to baffled doctors, missing out on yet more experiences that a young person should have; if I can capture the deeply traumatic emotional rollercoaster of trekking through healthcare systems in four countries, then I will never spend my pain-free days without gratitude again.
I also want to remember the people who did help me to find answers, to feel less alone in clinics, who held my hand along the way. Those who reminded me that the absence of medical evidence does not negate the fact that you are in pain and there is a legitimate answer to that pain. It’s never just in your head, you’re not “crazy”, “hysterical” or “dramatic”; your body is trying to protect you by screaming at you that something is wrong. You are simply listening.
Written by Kate Brayden
Kate works as a content creator and journalist for Hot Press magazine in Ireland, contributing works about music, culture, current affairs and healthcare to IMAGE magazine, the GCN, STAND News and Shemazing.net. When she's not wandering around a hospital cursing the bad food, she can usually be found bleaching her hair to stop everyone calling her by her twin's name.