Healing from shame

At the age of 33, I have never had sex without being in pain. Through a very long and drawn out course of well over a decade of seeking answers and a cure, I have been diagnosed with vulvar vestibulodynia (a subset of vulvodynia, also known as vestibulitis) and vulvar dermatitis. The latter is linked closely to my overall tendency towards dry skin and eczema although on examination, I look healthy.

Naturally this has greatly affected my relationships and led to me generally staying single so as not to be in pain. I was so embarrassed at the thought of telling a boyfriend or anyone for that matter, that I largely suffered in silence, ashamed of this mystery illness that I appeared to have developed for no obvious reason. Doctors were telling me there's nothing wrong with me and that it's "just psychological" yet my body was screaming out in pain. For a really long time, I couldn't talk about it without crying and I spent so much energy on hiding it from anyone and everyone, even those closest to me. My absolute worst nightmare was someone finding out. I have spent many years trying different healing modalities from west to east which, while teaching me a lot along the way, have, for the most part, not made a difference to my vulva pain.

It was mid-2014 when I decided that if I can't cure the physical pain, I can at least work towards losing the shame I feel surrounding it all. Which had arguably been the worst part for me. If I had the same pain but in my arm say, my life so far would have been a lot easier!

So I have embarked on a journey. I spent 3 months with a psychotherapist. At that point I was working 12-15 hour days in a very stressful job which I was not sad to leave on having saved up just enough money to take two months out to travel and essentially, rejuvenate. This gave me a lot of time to think and in November 2014, I wound up in Bali where I stumbled across Sacred Wellness Institute, the most amazing, life changing retreat week of healing that I joined alongside four other women facing other life challenges. No one else there had vulva pain but I was given the space and understanding to share which I found so hard but knew it was what I was there for. I finally told my family who were very supportive. I was nurtured and told by various practitioners there that I was holding a lot of pent up tension in my lower chakras.

Bali was a mind blowing experience and I was floating on air for months! Since then I have got a new job with more respectable hours, spent a lot of time watching TED talks and documentaries, reading books and articles, all on vulnerability and wellness in general. 

Don't get me wrong, I still have a lot to work on but I now don't get upset when I talk about my vulva pain. Rather, I can just be quite matter of fact. I have a wider support group of people closest to me that I can talk to. These parts of our bodies embody the power of recreation. They are the essence of our femininity which is a beautiful thing. None of us have anything to be ashamed of. 

What I really realise now from all my deep delving is that the shame I've felt around that area of my body and my sexuality has actually been a big cause of all my pain. A huge breakthrough! Every time I used to wince at the thought of my pain or thinking about trying to have a relationship right from early teen years, I was unknowingly tensing even tighter. I am now seeing a brilliant physiotherapist who is working internally to release this tension and retrain the muscles. It is very slowly working. Meanwhile, I now realise that as a stubborn and chronic condition, I cannot only try to heal with external things. It must come from within.

In the words of Dr Lissa Rankin:

"When we focus only on strictly physical and biochemical diagnoses and treatments, we miss a potent opportunity to allow illness to serve as a vehicle for personal growth and spiritual awakening".

I am now feeling more positive than ever that I am on the road to recovery. And I feel stronger and better than ever within myself. If you are in the same boat as me, what uncomfortable emotions do you have that could be stopping you from feeling as well as you deserve to feel? It's not easy but maybe this could be your answer.

“Are you pain-free now? "

"Are you pain-free now?"

I recently got this question from a reader, who pointed out that it wasn't clear from my blog. Good question, I thought. I should clarify that!

Why the hesitation, you may wonder? Isn't that a simple yes or no answer?

Well, kinda. The simple answer is "Yes" but I have so much hesitation about declaring it. This question made me realize that I fear saying "Yes, I'm pain-free," because if I then ever had a flare-up, people would think I was dishonest or fraudulent.

On the other hand, if I boldly state my success and do remain healthy, then people may develop some ridiculously high expectation of me. I fear saying "I'm pain-free" is the equivalent of saying "I'm perfect for forever and ever and shall never have a health problem again because I've figured it all out!" - and well, I am human. While I acknowledge that I put a ton of work into my recovery and it paid off, life is still a huge mystery, and there is so much I don't understand about how human bodies work.

So, let me explain the gray area between "yes" and "no."

One of the things I have learned from chronic health issues is that they ebb and flow - like, oh, EVERYTHING in life. There is HUGE, ginormous misunderstanding about this in our society, which leads to unneccessary stigma - that we are somehow in one bin (healthy) or the other (unhealthy). People in the "healthy" bin supposedly live happy, productive lives, while those in the "unhealthy" bin wither in obscurity (or something like that.)

But life is not like that. Some people seem "healthy" on the surface but are struggling to manage anxiety, depression, digestive problems, or whatever behind the scenes. Many people with long-term health challenges lead joyful, productive lives both personally and professionally. Also, even robust physically "healthy" folk are still human and face other challenges. We all have ups and downs of some kind or another. We all have strengths and weaknesses, blind spots, and beautiful gifts to share.

So, if you want more detail, and for me to answer the question already, here is my story, using the commonly understood pain experience of migraines/headaches as an analogy for v pain:

From 2004 - 2007 I had 365 migraines a year. It was hard to function or be happy then, although I still dragged myself to school and then work and back home again.

After three years I finally found some help. The migraines went away for a few months, but then I experienced some very stressful life events, and they came back. I then managed to find some other, new help, and learned and grew and changed, and my daily migraines dissipated. They became just plain old headaches, and then only intermittent headaches.

Now I have headaches a few times a year. They are usually pretty mild, the kind I don't even need Tylenol for, but on the rare occasion they warrant a Tylenol, I'll take it.

I think going from 365 debilitating migraines per year to the occasional mild headache is pretty impressive on the healing-from-chronic-pain scale! It is a fan-frickin'-tastic, raging success story.

As far as translating that analogy back to the v pain experience, in my "migraine" days I was in constant pain that would be exacerbated by even a slight touch, like wearing properly-sized underwear. All of my pants were two sizes too big, and I sought out jobs that allowed me to stand, as sitting was excruciating. Intercourse was a no-go (although I still had consistent pleasurable sex thanks to my clitoris. Oh how I love her!)

Now, with only the occasional headache, I live a normal life, with pants that fit - even tight jeans. I never worry about "How long will this activity require me to sit?" and enjoy intercourse and sex in general with such enthusiasm that my husband worries the neighbors will hear. 

Functionally, I am a totally different person. 

Another huge shift in my experience is that I no longer see pain as the enemy. It only crops up when my body is like, "Hey lady, I need a little adjustment here." It's my body's way of telling me that I need to change something, often in my relationships with myself or the outside world. I think the reason I so rarely need "Tylenol" these days (aka topical estrogen or some other kind of intervention) is because I have become so good at reading the messages of my body and responding in a loving way.

For instance, I get actual headaches when I am dehydrated, overdoing it, sleep-deprived, or stressed out. I get shoulder tension, forearm tension, and wrist pain when I am too long at the computer. Yes, these cues are annoying, but on the other hand if I take care of myself  - stay hydrated, get sleep, take breaks from the computer - the physical cues to "adjust please" don't happen because there's no need for them. That's pretty reasonable, right?

It's the same with v pain. I feel little warning twinges when my boundaries are being disrespected or I feel really angry but am trying to hold it in. Since I know this about myself, the slightest hint of pelvic floor discomfort helps me stop, take a moment to figure where I am being violated, and then adjust course. Presto, pain averted.

Am I guaranteed to be pain-free every moment of every day, for forever and ever? No. Have I become the absolute master of my body and can fix everything about it exactly the way I want, every time? No. Have I achieved some mythical state of perfection, and no longer need to keep growing and learning? No. Am I still a work in progress? Yes. 

Am I pain-free enough to live the life I want? Yes. 

* * *

I share this level of detail with you all because when I first started having pain, I couldn't find a single role model! I wanted to hear a hopeful story, but there were none to be found.

So now you have it. I have become the (flawed, totally human) role model I wanted, ta da! Even if your pain is debilitating and you are having 365 "migraines" a year,

getting better is possible.

I'm proof.

I'm here. I'm real. I climbed this mountain and you can too.

HUGS!

~ Faith ~

Good News on the V Health Front

I recently read an article in the New York Times about the rising popularity of period tracker apps, and how they are easing the taboo around menstrual cycles for younger women.

AWESOME.

I love news like this.

I myself have used a tracker app for years, and while I don't think they are the be-all-end-all in terms of changing the national dialogue on periods, I think they are step in the right direction. If we can learn to talk comfortably about something common and normal like (gasp!) periods, it builds a foundation for discussing things that are not normal, like v pain. 

Why do I not think they are the be-all-end-all? Because there is still a lot of negativity around periods that tracking doesn't necessarily dissipate. For instance, in my own life I've overheard comments along the lines of "I love my period tracker because I know when I'm going to be a crazy b****," or "Ugh, it warns me of the dark times so I can plan around it."

In these scenarios the app is used as a coping mechanism to deal with an unavoidable evil rather than a tool to build a better relationship with your body so your periods can be easy, consistent, and comfortable - the way they are meant to be.

I would like to see tracker apps go one step further and include some education about how periods do not need to be hellish, and if they are, how that means something is awry. I really wish that there was more education in our society in general on this topic - there is a lot of unnecessary suffering going on. 

Side note: if you have troublesome periods and it's news to you that healthy periods are possible, check out "Women's Bodies, Women's Wisdom" by Christine Northrup for a nice introduction to living well with your cycle. If you want a lot more details on specific nutritional and lifestyle changes to support hormonal health, a great resource is Alisa Vitti's book "Woman Code" and her website www.floliving.com. The Red School focuses on the menstrual cycle as a route to psychospiritual and personal growth and leadership - a total 180 from how most people in our culture view them. If those don't resonate with you, there are plenty of additional resources, such as treatments and resources through the world of Traditional Chinese Medicine and other alternative and complementary care modalities. No need to suffer endlessly!

At any rate, taking menstrual cycles off of the "taboo" list is a great start to healing our cultural issues around periods and v health. 

Woo hoo!