Posted by: Abigail Steidley | February 9, 2008

The Emotional Impact of Vulvodynia

Whether you’ve just been diagnosed with vulvodynia or you’ve been dealing with it for a while (and even two days with vulvodynia can seem like a very LONG while), you are now a member of the club.  It’s that exclusive membership you never asked for, never dreamed you’d get, and though you never pay the dues, you just can’t escape.  You are dealing with a secret pain in a secret place and it has stolen your sex life, your comfort, and your ability to think about anything besides your vagina and or vulva.  Prior to this experience, you never once uttered the word vulva, had never heard of vulvar pain, and probably didn’t even really talk about your vagina all that much.   

It’s such an awkward situation.  You are in agony, you are suffering, and you have to pretend like nothing is wrong.  Your vulva is on fire, it hurts to have sex, and you are protecting this information like it is a state secret.  You can’t explain to your coworkers that you have the flu, a headache, or back pain.  You can’t pronounce the official diagnosis without feeling your face flush, your heart race, and your palms sweat with embarrassment.  And even if you did tell someone you have vulvodynia, they would think you were speaking another language or perhaps suffering from a rare fear of Volvos.   

You wish you could return to that place of blissful ignorance where the vagina was something you pondered in depth exactly once a year during your pap smear.  Maybe you said a few grumpy words to it once a month when Aunt Flo stopped by for an unannounced visit.  Now, your life revolves around it, and that horribly, embarrassingly-named body part your doctor calls the “vulva.”  

If you’re like me, when you finally figured out what was causing the intense pain in your nether-regions, you were at the top of a gigantic mountain of research, doctor’s visits, and useless creams or yeast-infection medications.  You were so ecstatic to find a doctor who had a name for your pain that you left the office actually feeling happy for the first time since the saga began.  It wasn’t until the euphoria faded and you started your internet research that you realized a diagnosis does not necessarily lead to a cure.  In fact, as you sifted through the research available on vulvodynia, you most likely began to feel something like despair.   

The physical pain of vulvodynia is one thing.  The emotional turmoil it brings along with it is quite another.  The panic, fear, terror, horror, despair, anger, depression, and loneliness can feel exhausting, overwhelming, and absolutely impossible to face.  During my years as a sufferer, I longed for someone to talk to, someone who could offer an understanding ear – someone who didn’t mind hearing about this strange and private pain.  I had family members who listened and supported me every step of the way, but nobody had been through this pain, and nobody could offer a beacon of light to lead the way to a better life.  I needed somebody who understood. 

The intent of my blog is to guide you through the emotional turmoil of dealing with vulvodynia.  I am a life coach, trained by Martha Beck, Meadow DeVor, and Brooke Castillo.  Martha Beck coaches specialize in thought work, which essentially means learning to understand your own thinking and how your thoughts create your emotions.  As a former vulvodynia sufferer, I understand the physical and emotional pain of vulvodynia, and I would like nothing more than to help fellow sufferers find their way back to peace, happiness, and joy.  It CAN be done.  

Never heard of life coaching?  Visit the blogroll to learn more about Martha Beck trained coaches.  

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Responses

Hi Abigail, as I was browsing on the net for vulvodynia I came across your blog. I’ve been a sufferer of lichen planus and associated nerve damage in the vestibular area for over 2 years now. My condition is complicated by the fact that it is a dermatological one, and it is unclear to me to what extent this is interacting with the nerves in the area. I’ve been seeing Doctor Stewart in Boston since November 2006. While she’s told me that my skin disorder is in its earlier stages and that steroidal creams can keep it under control, I’ve tried creams and meds and haven’t been able to achieve any stability in my condition. In the beginning I was only experiencing pain with intercourse, but just a couple of months ago I started feeling burning and tingling sensations upon sitting and when urinating. I’m really worried that my situation is getting worse and don’t know what to do. I will be starting Cymbalta soon for the pain (nortriptylyne hasn’t worked). I’ve been to physical therapy for a short period of time last year but not sure that did anything either. The therapist did tell me that the muscles in my vagina were more tense than normal, and tried to have me do Kegel exercises, and listen to relaxation tapes. What you are discussing seems to indicate to me that the root cause of my problem might be more emotional than anything. I do know that panic and anxiety are feelings are have to deal with on a daily basis, and sitting at work all day tightening myself down there doesn’t help i’m sure.

Excuse the length of my post. I’m just really confused and feel helpless about my situation right now, because I don’t know what is going on with my body and I am losing hope that any doctor will be able to help me (let’s face it if Dr. Stewart can’t who can). Perhaps in this sense your blog has come at the right time.

Can you tell us how long it took you to get better, and whether you took any medications to get there? How long did you continue to do physical therapy, and what exercises did you do? I could only continue for 10 sessions because of my insurance plan, and the voltage level (not sure what the right term is) in my vagina was up the roof (5-7) and didn’t really go down.

Feeling confused and helpless about your situation is exactly what a life coach can help you with. The emotions around this issue can be very overwhelming if you do not know what to do with them. Of course, it’s a little tricky to walk you through this in a blog, but you are aboslutely right - dealing with your emotions in every area of your life will absolutely help you feel better mentally, which will only help you feel better physically. I did try all of the treatments you mention but did not see real success until I began the work on my emotional state. I was in such a negative emotional place that I really couldn’t relax into healing. Once I did, the healing began. I saw improvement immediately, was almost normal at six months, and then a couple months later had no symptoms left at all. It was during this that I discovered Martha Beck and life coaching, and I do think my emotional work would have gone much faster had I found her tools sooner. They are very powerful.

Dear Abigail,

Do you know, by any chance, when Oprah’s show on vulvodynia will appear? I came across your question about it for someone on the web, but did not see an answer. I have been suffering from vulvodynia for 18 years. And yes, you are right, about being in a very negative emotional place that prevents healing. Do I understand it correctly that you were ONLY working on your emotional state, or did you have other treatments at the same time? Thanks so much!

Tamara,

I do not know what the story is on the Oprah show, though I am so excited that they did indeed tape it! I hope it airs.

I tried many of the traditional and not-so-traditional treatments for vulvodynia and interstitial cystitis, and then I started reading and researching and decided to work on my emotional state. As I did this more and more and learned how to do more effectively, I noticed that it was helping a great deal. I worked with my doctor to wean off of medications and cease treatments because I just knew that the emotional healing was doing what I needed it to do. I was still having symptoms, but I was not worried about quitting the treatments. I let them go, and just kept on the path toward health. So yes, I did actually heal and become symptom free by healing my emotional state - it sounds very wild, but that was my experience. Still, as a coach, I cannot claim that will work for everyone, and I would never suggest anything regarding your treatments. I believe you know best what you need or don’t need. My specialty is only in teaching you how to effectively dissolve emotions and create a relaxed healing state - which actually works very well in conjunction with medical treatments and certainly can only help. So it’s win-win.

Abigail

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