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.

Evidence-based Medicine Part 3: How is this relevant to me?

In Part One of this post I discussed the general background controversy of evidence-based medicine (EBM,) and some examples of how that is playing out in the pelvic pain world.

In Part Two we looked at a big ol' red flag that is not being discussed in the EBM controversy.

In Part Three - that's this one! - I break this mess down and discuss how it applies to you and the health of your lady parts.

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What does all this discussion about the strengths and limitations of EBM  mean for you?

Rather than waiting for someone else to fix us, we have the opportunity to step up and be in charge of our care. Be a partner rather than a patient.

To start, you'll want health care providers who have experience working with your issue. They have a higher probability of following the research out there, and will have the most anecdotal evidence to guide their suggestions.

You can find some of these people through "Find a Provider" pages at the International Pelvic Pain Society, the National Vulvodynia Association, and the American Physical Therapy Association's Section on Women's Health.

If you can't find anyone in your area, you can always try contacting someone close by to see if they have any suggestions.

What if you don't have access to someone with this experience? 

Then you need to be proactive and find the doctor who is most willing to take the time to find what little research there is, and combine their knowledge of your situation with the information they get. You can find great tips on how to do this within the limitations of our convoluted and time-strapped medical system in the book "Healing Painful Sex: A Woman's Guide to Confronting, Diagnosing and Treating Sexual Pain," by Deborah Coady, MD and Nancy Fish, MSW, MPH. (Which you should totally have anyway - in my opinion it's one of the best and most comprehensive books out there for V pain.)

No matter what doctor you have, you will have to be willing to take risks and try new things, and be prepared for some of those things to not work. No need to despair if that's the case. Bring your new information back to the table and keep working on the puzzle.

Since your doctor is going to be more humble about the limits of their knowledge, they are more likely to be open to whatever feedback and research you provide. 

How do you find research? You can access it through the NVA. You can also participate in studies through the NVA, helping to create more research. (FYI they recently overhauled their site, so if you haven't been there in a while, check it out.)

Another way to incorporate EBM into your care is to research information from studies on related topics. For instance, Dr Dean Ornish has extensively researched the impact of lifestyle choices on chronic illness.

If you are interested in trying something that doesn't have evidence behind it, or that is outside the bounds of Western medicine, your doctor may be more willing to support you than a doctor who is used to relying on evidence alone. Your experiment stands to benefit not only you, but others as well; your doctor can add your experience to his or her anecdotal evidence.

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A great example of someone who successfully healed with zero evidence of any kind is Sarah Kennedy.

Faced with painful sex but never getting an official diagnosis, she stumbled upon a technique called Orgasmic Meditation. Invented not for pelvic pain but to enhance one's sexuality, OM involves gentle repeated stroking of the clitoris, alone or from a partner. Boom. Regularly practicing OM healed her V pain and she is now a life coach who specializes in helping women experiencing painful sex and low libido. You can learn more about Sarah's story and her coaching practice here.

Even if you feel like you are running out of options on the EBM for V pain front, there is always something else out there. The world is a big place.

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It's true that we don't have as much evidence to go on when it comes to treatment for V pain. That doesn't mean we can't benefit from EBM. More importantly,

The lack or existence of evidence on treatments for V pain is not the sole determinant of whether or not we get well.

These bodies are ours and no one else's.

And we are 100% capable of taking care of them.

Getting Your Providers to Communicate

Sara Sauder, DPT over at Blog About Pelvic Pain just wrote a great post on how to get your providers to communicate.

As a patient I appreciate her perspective as a health care provider. She is very honest about how hard it is to get doctors to talk with each other.

Seeing this helps me realize that the struggles I face as a patient are not unique to me, but are part and parcel of a system that unfortunately isn't often designed to care for patients.

Thank you Sara!

Great Post on “When Sex Hurts There is Hope"

Hey all,

I'm featuring a great, recent post from When Sex Hurts There is Hope. This blog started before mine, in April 2014, and it has grown so much since then: there are loads of great posts on a bunch of different topics.

I appreciate how Sarah recognizes that the effects of sexual pain are not only physical but also mental, emotional and spiritual, and therefore healing must address all four factors as well. She generously shares the lessons she has learned, validating the struggle while avoiding despair (which is probably why I am so happy with this site - that is exactly what I wish to provide to my readers as well.)

The site is well-named, hope abounds there.

The post is entitled "Being Comfortable with Your Doctor," and writes about the importance of the patient-doctor relationship when dealing with a sensitive health topic. It goes nicely with the previous two posts from this week, (Flare Update 2 and Flare Update 3,) in which I discuss my recent physical therapy and neurology appointments.  The success of those sessions, and indeed any and all of my doctor appointments, is a result of the quality of the relationships between me and my health care providers.

Bravo Sarah! 

p.s. scroll down for the complete text of ms dickinson's poem

* * *

“Hope” is the thing with feathers - (314)

BY EMILY DICKINSON

“Hope” is the thing with feathers - 

That perches in the soul - 

And sings the tune without the words - 

And never stops - at all - 

And sweetest - in the Gale - is heard - 

And sore must be the storm - 

That could abash the little Bird 

That kept so many warm - 

I’ve heard it in the chillest land - 

And on the strangest Sea - 

Yet - never - in Extremity, 

It asked a crumb - of me.

Gettin' yer sexy on...Yes, it's possible

Highly relevant post over at ChronicBabe.com this week!

Jenni answers a great question from a reader, "How can I learn sexual confidence in spite of my illness/disability?"

I hope that her answer will be of use to you. I found it very encouraging since it reminded me of the fact that pelvic pain sufferers are not the only folks challenged with creating rewarding sex lives. Yup, it affects other folks with chronic illness, and let's face it, pretty much any human being.

Sexuality is about the whole person, not just the parts.

Remember to read the comments to see additional resources suggested by the awesome Chronic Babe community, and hear about their challenges and successes. 

Here's to a randy weekend!

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A note on the heart graphic:

One of my Women's and Gender Studies friends in college told me that the heart symbol evolved from a stylized depiction of a woman's vulva, viewed straight on, with her lifting the top two corners to show it off. I have no way to verify this, but I love the idea of replacing the heart's sappy innocence with something brash and carnal. It makes me smile a subversive smile whenever I see them...Rowr!