Soula Mantalvanos is an Australian artist living with pudendal neuralgia. She runs a website and a blog that chronicles her life since developing pelvic pain. These mediums are helping people around the world learn more about pudendal neuralgia (PN) and how to find the much deserved medical care they need. Soula has created a book titled Art & Chronic Pain – A Self Portrait which portrays her pain experience in the most beautiful and honest way. Most recently she gave a talk to 180 pain specialists at Australia’s 2014 Alliance for Improving the Management of Pain. She is an open person. Soula was willing to answer my questions and I am thankful for this as she is very eloquent in shedding light into what it is like to live with a pain that no one else can see.
Please know that this is Soula’s story. Your story is just that – your story. If you have pelvic pain, I want you to appreciate that each narrative and each journey is unique. Gather what you can from listening to others that know what you are going through, learn from what they have to say and use that to take one more step forward.
1. What was your life like before you developed pelvic pain and how has it changed?
My husband, Theo and I, shared a life which included our 10yr graphic design business in a home/office warehouse setup in the arty hub of Collingwood, Melbourne. We travelled overseas every year and enjoyed long drives on the weekend, a very full social life with family, friends, work and community functions. When I wasn’t in the design studio you’d find me in the art studio or practising my exercise rituals. I practised yoga four mornings a week, I used to end my routine (for those familiar with the yoga poses) with 8 mins in shoulder stand, 8 mins in plough pose before Shavasana.
I always had an abundance of energy, ideas flowed endlessly through my head and I executed all of them. I had no limits, I had no pain, I had no health issues.
2. How did you develop pelvic pain?
It all began March 2007. I sat on a fitball in our design studio, conscious of the risks of office sitting position, but in March, 2007 that antiburst fitball burst and I fell onto our concrete floor.
3. What were your symptoms when the pain began and what are your symptoms now?
I remember the heat, the toothache like pain, but I also had this feeling that a 3-4 inch needle was sitting inside the right buttock. That particular ‘needle’ feeling didn’t seem to be causing pain strangely. The pain levels didn’t subside after 8 weeks as hoped, in fact I began to get worse. My heel seemed less tolerant of pressure as time went on. Eventually I had to walk on my toes, in a soft shoe all day, never barefoot, not even in the shower. I felt I had my finger stuck in a powerpoint, the surge up my spine at times was intolerable. I didn’t know at the time what I was experiencing was ‘sensory’ pain so I couldn’t understand why loud sounds, vibrations, being in busy surroundings would add to my pain levels. If it wasn’t this sensory pain, it was the toothache-like pain, if it wasn’t that it was fire-like pain, it was non-stop.
Now my sensory pain is minimal but I would still call myself sensitive (you seem to compare everything to the worst pain you’ve experienced, so ‘minimal’ is really still a bit of a bother), I avoid loud parties/crowds etc. as I have learnt this does increase my pain levels. This issue was resolved when I thought to just check things out with my gynaecologist. He found a thickened rectovaginal septum and extracted that. I could once again shower barefoot and that feeling of a needle in my backside disappeared.
Not realising I had a nerve block til much later, I had 3 amazing months and thought I was fine after the procedure. My toothache-like pain came back as I became active however, and so did the fire. I have managed to reduce both these symptoms but it’s taken some hefty treatment, not to mention the magical diagnosis.
So I guess to answer your question in short – the pain I felt when I fell is the same (except the needle feeling), however it’s a much lower level, it’s tolerable, I’m even pain-free at times.
Did you know anyone with pelvic pain before you began experiencing it yourself?
No, other than period pain/gyneocological issues I’d not heard of this kind of pain.
Can you describe some of the first medical appointments that you went to in attempts to find a diagnose and a treatment for your pelvic pain?
It might be easier if I tell you which medical appointments I didn’t go to. For some reason I never got around to seeing an Osteopath, but I saw everyone else! As an artist I’m much better communicating in pictures:
How were you diagnosed with pudendal neuralgia? How did you learn more about pudendal neuralgia?
After 4 years of searching and the pain levels rising to the point where I couldn’t sit or stand and fatigue was consuming my body & brain, I had a cortisone injection to my coccyx and the results were very telling. I had 3 amazing days which is a neuropathic response so my orthopaedic surgeon referred me on. I was so desperate by the time I saw the neurosurgeon I asked him to chop my coccyx off. He suggested we don’t opt for such invasive action but rather I try a peripheral stimulation device. He had presented my case to many other surgeons, even overseas and to the boards he sits on. They all suggested the same device as it was a less invasive option.
My trial was successful and the device was implanted almost 4 years after my accident. The reason I mention this is not only is it significant to my treatment and pain relief but it lead to my diagnosis. I was able to read again after the pain levels were reduced with the stimulation device and I picked up ‘The Brain that Changes Itself’ by Norman Doidge. It referenced Australian professor Lorimer Moseley and his mirror therapy technique and how he is taking that further so I googled his name and found many email addresses. I emailed!
It astounded me that so many people had looked in and out of my body and this man read an email and replied, “Tell me where you are and I’ll put you in the right hands”… he did exactly that. 4.5 years after my injury I saw Anne-Florence Plante at Melbourne’s Royal Women’s Hospital (Physiotherapy Department) and within minutes we were speaking the same language. She not only diagnosed me , she had terms for my pain descriptions, explanations and even treatment. She even showed me a technique to release the entrapped nerve and relieve my pain when I needed to.
Anne-Florence taught me most of what I know. In fact, she handed me her research and said, “Build a website, tell your story” as I was adamant to help others and prevent them losing 4.5 years in the search for diagnosis. Her research was an encyclopedia in PN [pudendal neuralgia]. It led me to all the specialists in the world and I contacted as many as I could to ask permission to include them on my website. They still send me research and news. I have to know everything there is to know about PN if I have a chance to beat it.
What inspired you to write your blog and to create your book?
As I mentioned above, awareness was the main reason for creating the website www.pudendalnerve.com.au. There was no information anywhere at the time. There is a bit more online now but I often find what’s online is not very hopeful. It’s never a patient voice – someone you can identify with. I wanted to make it more personal and keep it up to date too. The website has an incredible amount of visits all around the world.
The book was a cathartic exercise for me and a creative one too. I wanted to also create a companion for others with PN. I wanted the book to serve a purpose for those that have no idea what PN is and I didn’t want it to be a huge bio, it had to be short and with many images.
How has experiencing pelvic pain affected your relationship with family and friends?
Sadly it affected my family relationship as we can’t do the things we used to or even see each other as often. When I think about how PN has affected my friends, I could almost say it’s sifted the goodies from the badies actually! And I’ve made so many new friends in my local community as they are the ones I can physically get to (at the local cafe, restaurant, gallery opening etc). You really do find out who your friends are.
I’m sad I can’t go away with friends/family, go out for a day, drive out to a winery for a Sunday lunch, attend many of the special birthdays and occasions… but I just can’t do anything about it. I fill that gap now with artwork. I’m lucky I have creativity.
Most affected and most upsetting is seeing my husband’s life and our relationship change. We are certainly getting through PN and the massive change of life, but it is very difficult, we’ve lost our freedom, our spontaneity, we are under much more pressure and there are great sacrifices to make daily. I also rely on his help 24/7, he is my biggest treatment by far. Without him none of my treatment would be affective I believe.
How has experiencing pelvic pain affected your sexuality?
It has grately impacted Theo’s and my sexual relationship. Like everything else in our life, this also had to change and we had to adapt. Even worse is the difficulty and frustration of having to get your head around persevering with this intimate and beautiful part of our relationship when you know it’s going to cause pain. So many aspects have to be considered: when, where, how, is there recovery time afterwards, what activities was I doing before that might impact… it really is incredibly saddening. But, I was worse. Before the removal of the thickened rectovaginal septum I had awful clitoral stimulation. THAT was horrific. I could only describe it as torture. I obviously had way too much pressure in my pelvis and the removal of that septum thankfully resolved that issue.
What are some of the best pieces of advice that you have received in regards to your pelvic pain?
My physiotherapist and her diagnosing me was the best by far. I can’t say I’ve had much great advice. I’ve had to find out so much on my own and what there is to find out really isn’t “advice” – it’s coping mechanisms. Recently I began to read Naomi Wolf’s Vagina and it calmed me to hear that every woman’s pelvis is unique. That helped me understand why I always felt no one was experiencing what I was and why the treatments for PN were different for all of us.
What are some of the worst pieces of advice that you have received in regards to your pelvic pain?
The worst comments and “advice” came prior to my diagnosis in this form: “This is chronic pain”, “It’s quality of life for you now Soula, go home and get comfortable”, “Accept it and don’t ever investigate your issue”, and the classic, “It’s all in your head”. Since my diagnosis, I’ve really appreciated my Traditional Chinese therapist who explained my concern for my legs giving way during an enormous lightening strike (felt like it landed on our kitchen bench and I happened to be walking past that second). He said, “Soula you must remember your initial injury is a shock to the nervous system, so it is there you will feel anything first”. That just makes so much sense to me, that advice came just a few months ago.
Are there any special products that you use that you find helpful and worth sharing?
Treatments: It has to be No. 1 my implant which has been a wonderful, life-saving device. I’m wearing some great cooling patches called Pain Reliev Cooling Patches (no that’s not incorrect spelling) which seriously stop the spasm and in my lower back region. When I initially started them I was ready to give up on the 3rd day, but perhaps some pain was being drawn out, the 4th day was heaven and now I use them for a little extra ammunition or pain relief rather than daily. Although he isn’t a product, Theo is my biggest treatment. PN needs understanding and help, a lot of it. The internet and my smart phone are essentials. They have kept me connected to the world – they are my legs and arms. Look what’s happened here… all internet! Another thing that’s not a product, but rather a huge gift, is my creativity. I guess a very special product is my home – my sanctuary which we setup and renovated to suit my limitations (or should I say abilities). It’s so important to love your own space when you’re quite confined to it. And finally, another thing that’s not a product (sorry) – my community. I live in a very creative hub so a small walk finds me at a gallery opening or at a cafe, and having been here for well over a decade, the people are really like my family. It’s very important to feel connected to the world when you can’t physically participate much. I use my seating aid a lot. I made that, you can see it here: http://www.pudendalnerve.com.au/2012/11/28/take-a-seat-if-you-can/
Read the remaining answers on Sara’s blog spot
11. What does your medical team look like and what is each provider’s role?
12. If you are receiving physical therapy, what does this treatment look like?
13. What would you like to say to someone who is just starting to experience pelvic pain?
14. What medications are you taking?
15. Do you plan to try new treatments in the future, if so, which ones and why?
16. Who has provided inspiration for you?
17. Where do you find support from?
18. Have you found any books helpful in providing support or in opening your eyes to a new perspective?