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.
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.
4. 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.
5. 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:
5. 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.
5. 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.
6. 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.
7. 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.
8. 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.
9. 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.
10. 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/
11. What does your medical team look like and what is each provider’s role?
I’ve always handled treatments one at a time so I can really measure effectiveness. It’s very hard to tell what works or doesn’t with PN, it takes a longer time to see a difference so now I’m at Traditional Chinese Medicine (TCM) (specifically acupuncture and herbs), and a monthly remedial massage. My TCM has made an incredible difference to, not only my pain, but my fatigue levels. The fatigue is falling away. I used to struggle handing a 5 minute task. Now, even if I’m in pain and have to rest, I can often keep drawing or writing while resting. It’s a huge difference. I feel my TCM has also prevented further nerve blocks, time will tell about that. And remedial massage is obviously necessary because I can’t exercise all my body and get it moving. I am on a little medication, in fact I split my tablets. I’m actually feeling very independent – this is a very small list of appointments now. I see my TCM once a month. I hope I can maintain the distance between appointments, time will tell.
12. If you are receiving physical therapy, what does this treatment look like?
I haven’t felt I’ve needed physiotherapy with the acupuncture and remedial massage and I am happy to report I recently began yoga (finally able to!) so I’m loving yourpaceyoga.com‘s yoga for pelvic pain cd. I find this is all about opening the pelvis, releasing, breathing, no squeezing, no chore work, no pressure in the area and it’s really working. I do a portion of the cd that I feel is ok for me and hopefully will work up to the rest. I cannot lie on my back so that rules out many exercises. The sitting ones I do with my special seating aid.
13. What would you like to say to someone who is just starting to experience pelvic pain?
Well it’s hard to say, we all experience pelvic pain so differently and all seem to be introduced to it differently. I would hope I wouldn’t have to say anything and their issue would be a short one, but if it’s someone who has been experiencing the pain more than 6 months I’d say definitely see a pelvic pain specialist and at that early stage, a physiotherapist (who really knows what they’re doing) would hopefully be able to resolve the issue before it gets out of hand. There are some great Facebook groups that may help find someone in a local area. I have a post and am trying very hard to get a list of practitioners reputable in relieving pelvic pain on there. Also, pelvicpain.org is the world organisation, they have lots of info on their site. If they are chronically experiencing pelvic pain and it’s post 6 months, I would suggest rest, rest, rest, not to be heroic about the pain and to listen to the body. If it feels better resting, then do lots of that. I pushed through thinking nothing of my pain and I do have a niggle about that. Another thing I would probably say is to go slow trying treatments, one at a time and write everything down. Take the pressure off yourself. Let family and friends know you’re not your usual self and that you will need time and understanding. If the person in pain is working, I would certainly suggest time away from work. Although I dislike saying it, pelvic pain is a lengthy journey and there is no short cut. It must be travelled cautiously and slowly even when you have a great day (look out for that PN trick, gets me even 7 years later!).
14. What medications are you taking?
Amitryptaline 10mg – it’s called Endep here. I split the tablet and take 2.5 mg in the morning and night and alternate with 2.5mg and 5mg the next day. I had a terrible experience with medication during my first two years of having it. I was prescribed Lyrica and Lovan (so that’s a nerve inhibitor and an antidepressant)… honestly, I couldn’t recognise myself. I had to turn spell check on the computer and reteach myself to cross the road. I was so disoriented I couldn’t put three apples in order if you asked me to… it was an awful time. I lasted 6 months and thankfully learned from the masked pain what caused more pain for me, and also that I could never take those sorts of doses again (nor are they a long term plan). So after my second nerve block, a practitioner suggested I team up my block with Endep. I started with 1/4 tablet every third day and worked my way up to my current dose. I stopped when I got so sleepy I couldn’t get up and thankfully it was enough of a dose to give me pain relief. I’m not sure we need the doses prescribed to us. It doesn’t make sense that we would all need the same dose and I don’t know why the tablets are not made smaller. I hope to be off Endep too one day.
15. Do you plan to try new treatments in the future, if so, which ones and why?
I feel I’ve run out of options, to be honest. I am content with my efforts at the moment and will continue. The only treatment that I think about is perhaps another nerve block, but as I mentioned, I think the acupuncture is covering this. Although I’ve had better pain levels after a nerve block, I think it’s because I’m doing more that the levels are rising, rather than not having the block. I prefer natural therapies also, so if I can manage that way, I certainly would prefer it. I could be less active, I’m trying to work at the moment and although that’s happening in my home/warehouse setup, it’s an incredible pressure for me, but one, again, I hope to sustain.
16. Who has provided inspiration for you?
My physiotherapist has been most inspiring. She gave me hope and she clarifies my thoughts. I feel, as a creative person, inspiration comes as a bit of a gift to you. My mind, although occupied and interrupted very much by pain, is always also on creative expression, so even if I am in pain, how to express it distracts me. I look at Frida Kahlo’s work and she does inspire me, but I have a different way of expressing my reality. It’s sad to say, but as far as looking at others with PN, there are not many I can look to who have conquered the issue. There is a “Sorella” I have in California whom I cyber met when she wrote to me after reading my website and she tells me she’s much better now. I will certainly be waiting for her next update and if it’s a good one and she writes about more progress I’ll definitely be looking to her for inspiration.
17. Where do you find support from?
Theo is my Number 1 support, no one comes remotely second even. He helps me every half hour of the day and he does it with so much love. He protects us. He does so much so that we can sit down and have that dinner or drink “up the road”, so we get valuable time together. He understands creativity is a huge part of my life and helps me so that I can create. He wouldn’t dare I use my capacity on 15 minutes cleaning and lose a whole afternoon (if not more), instead saving me that capacity for the studio or, so I can work and feel part of our life again. He understands my limitations. He doesn’t understand PN, he can’t possibly, but he listens and he believes me.
18. Have you found any books helpful in providing support or in opening your eyes to a new perspective?
Well I certainly loved putting my book together. There wasn’t anything out there like it. It’s a comfort and when you’re in so much pain you can’t speak, you can let someone read what’s going on with you. I wanted it to be a companion so that others with PN would feel I was there with them, there’s nothing out there like it. Most books are too lengthy, you end up reading another person’s scenario and thinking “that’s not me”.
I’m also currently reading Amy Stein’s Heal Pelvic Pain and finding it a great resource. I read it and think “this may not be for my extreme level of PN”, but I’m certainly going to try the exercises and see how I go. It makes sense to me that our pelvis could well be a huge tense group of muscles and nerves. At the very least I know these approaches will provide more relief, the yoga I’m doing is similar and it has provided relief already. Before my implant I’m not sure I would have said that, I felt nothing could change my pain signals. I was in so much pain all the time… pelvic pain does change, it’s just really slow and needs a lot of your attention. Of course, early detection is key. I wish I had seen my diagnosing physiotherapist in the first few weeks, I bet I wouldn’t be here now!
Fore more information about Soula Mantalvanos, please visit her site at www.pudendalnerve.com.au.
Readers of Blog About Pelvic Pain can get a copy of Art & Chronic Pain – A Self Portrait with the postage fee waived.
Please email me at [email protected] with any questions, or you can leave them anonymously in the comment section below.