Wednesday, October 7, 2009


There was a time when all I could think about and focus on was my vulvodynia/vaginismus. It defined me. Even when I wasn't actively thinking or worrying about it, it was the running backdrop to everything I did or thought.

And then when my dad died this summer, I found that my thoughts shifted. Suddenly, the energy I was putting into my treatment - all of the acupuncture, the herbs, the meditating and stretching, the physical therapy, etc., etc., etc. - was needed elsewhere. I found that I could not physically focus on both my vulvodynia and coping with my dad's suicide. I was exhausted. I needed a break from everything. I stopped the herbs and acupuncture. I slacked off on my ointments. I no longer did the stretching and biofeedback homework that I used to be fairly diligent about.

When I went back to see my specialist a couple of months after all this happened, I discovered that taking this "break" did me no good, not surprisingly. My skin was inflamed again, almost as bad as it was before. Stress can exacerbate my condition and I don't know if I've ever been more stressed out than I am now, what with dad's sudden death, my upcoming wedding, and an imminent move to a new city. I went back on the ointments, started stretching again, and am trying to keep motivated. I saw a lecture last week by a doctor who specializes in vulvar pain and was frightened by what she shared about lichen planus. I am trying to be a good patient. I do want to get better. It's just exhausting.

Friday, August 7, 2009

Vulvodynia Featured on 20/20 Tonight at 10PM ET

Everyone should watch tonight's episode of 20/20, which features stories of women suffering from vulvodynia. Go to:
for more information.

Wednesday, July 22, 2009

Difficult Time

It's been a while since I've blogged. For the past couple of weeks, I have put all of this part of my life on hold, which I never thought was possible since it's typically all-consuming.

My father passed away in early July. He was suffering from bipolar II and jumped from the top of a parking garage. I had seen him the day before and we had talked about his depression. I assured him that things would get better. He patted my leg and his eyes welled up and he gave a small nod. He asked me to stay a bit longer, but I told him I had a lot on my "to do" list. He hugged me - twice - and thanked me for supporting him. I told him I'd see him tomorrow, but tomorrow was the day he died.

I feel guilty and sad and angry and if I let myself think too much about him and his death, I feel nauseated. I'm writing about this because I wanted to let everyone know why I've been gone a while, but also to shout from the rooftop that if you know someone who is suffering from a mental illness, please please please talk to him about it and encourage him to get help. My dad was seeing a psychiatrist, but he didn't give it enough time to help him.

I went back to physical therapy today, but I'm not sure when I'm going to have the energy to devote to my health. I'm determined, though, so I know that it's only going to be a matter of time before I resume my treatment. For now, I just need to rest and try to find some peace.

Wednesday, June 24, 2009

Online Tutorial for Vulvodynia

The NVA just launched a fabulous new online resource, Everything You Need to Know about Vulvodynia. It is pretty comprehensive and includes everything from what it's like to be single and dating with vulvodynia to how to prepare for a doctor's appointment. Definitely worth checking out and sending along to friends and family.

Monday, June 22, 2009

live each day with hope

I started back with physical therapy a couple weeks ago after an 11 month hiatus and was feeling really good about it. I was able to insert the biofeedback sensor without any trouble, my physical therapist was able to do internal massage without too much pain, and I was enjoying being able to see real progress being made in my ability to relax my pelvic floor.

And then today I noticed some pain when my physical therapist began to apply the lidocaine. It was like a tightness and burning and tenderness near my clitoris that I hadn't really noticed before. I told my pt about it and she noted that the skin did look irritated.

Which of course made me think back to last July when I was in the same room, on the same table, having a very similar conversation about pain and skin irritation, only to be diagnosed six months later with lichen planus and vulvar vestibulitis.

I am at a breaking point. I am so tired of these false starts, the constant attempts at remaining positive and doing my best to feel hopeful even though what I often want to do is curl up in bed and sleep until this is over. If I have another major setback, I'm not sure where I will find the energy to keep going. And even as I type that, I know that I *will* find the energy - I always do - and that I will live each day with hope that the worst is behind me.

Tuesday, June 2, 2009

This will not define me. This will not define me.

"I will not let this define me, I will not let this define me...."
I have found myself chanting this a lot in the last week--usually when I'm headed to bed or taking all my meds in the morning or evening. I find that the vulvodynia takes up so much of my thinking and being, that I realize I'm in danger of turning into the vulvodynia girl. And that's the last thing I want.

I don't want people to feel sorry for me.
I don't want to feel sorry for myself.
I don't want to be dealing with this for years or for the rest of my life.
I want my fiance and I to be able to have a sex life.
I want to be normal.

Thursday, May 28, 2009

A good article about vulvodynia...

I just came across this great article called, "A (Chronic) Pain in the Vadge" on Definitely worth reading!

Update on last week's appointment

After all that worrying about my appointment last week, I'm happy to report that it went well. I went home with more prescriptions (my mom just bought me a pill organizer - !), but the good news is that my "skin looks great," meaning that my inflammation has gotten better. I still experience pain - in fact, this week has been pretty bad, with me waking up in the night because of it - but at least the skin is starting to heal. Baby steps, right?

I can't say enough good things about my care-giver. I switched to the nurse practitioner who ran my wellness class and she was really really great. Not only did she take the time to answer my questions and explain everything without making me feel stupid (you'd think this would be the norm, but it's not), but she also was very sensitive to my "issues." She didn't just whip out a mirror to show me my vagina when I asked her about where I should be applying my topical ointment (I've had this happen a few times during exams, which makes me feel sick/anxious). She asked first and gave me alternatives to the mirror option. She also asked if I could handle the speculum, if I wanted her to insert it or if I wanted to insert it myself. This is the first time during an exam that I've been given choices and it went a long way toward easing my anxiety and making me feel in control.

In a couple of weeks I return to physical therapy. I'm looking forward to seeing my pt and moving forward. I don't want to be struggling with this same issue ten years from now...

Wednesday, May 20, 2009

Tyra Banks Show and Vag

I've yet to watch this and I've heard mixed things about a recent episode of the "Tyra Banks Show," which focuses on "married virgins," but it's great that she's bringing the topic of vaginismus into the mainstream. Any thoughts?

Monday, May 18, 2009

Tomorrow, tomorrow...

I have an appointment with a vulvar pain specialist tomorrow morning. The last time I had an appointment with a specialist at this same provider, it was a bad experience. I won't go into it, but let's just say I was left feeling vulnerable and anxious after having been forgotten in an examination room for close to an hour.

I switched care-givers the next day (it wasn't just the waiting, but a number of things - the waiting was what convinced me to follow my instincts and switch).

I am hopeful for what tomorrow brings - hopeful and anxious at the same time. I know the specialist I'm seeing - she led a wellness class I took last spring - and I really like her and feel comfortable with her. I know she will listen and remember my history. I know she will be patient as I ask question after question. But I'm dreading the actual examination. I have so much pelvic floor tension and have been in discomfort/pain for so long, that I feel physically sick when I think about how painful the examination might be.

This is counter-productive and feeds the cycle of pain. The more stress/anxiety I feel, the more tense I will be, the more my muscles will spasm due to this tension, the more pain I will experience. I know this in my head, I do, yet I can't re-train my brain to relax and let go, relieving those pelvic muscles of some of the tension and possibly allowing me to have a tolerable examination.

I just want this struggle to be over. I am so tired of this consuming my life. I don't want this condition to define who I am, but it's hard not to when it's what I think about a large part of my waking hours.

Friday, May 15, 2009


The International Society for the Study of Vulvovaginal Disease (ISSVD) defines vulvodynia as "chronic vulvar discomfort or pain, characterized by burning, stinging, irritation or rawness of the female genitalia in cases in which there is no infection or skin disease of the vulva or vagina causing these symptoms."

This is the first time I've seen the definition of vulvodynia include the caveat that it's a condition where there is no infection or skin disease present. I have lichen planus, a dermatological condition. So does this mean I don't have vulvodynia? Even though the specialist I saw diagnosed me with
vestibulodynia? Or does lichen planus not count as a disease?

I'm so confused. Not only about this, but about the role of physical therapy in getting better. First I was told to hold off on pt until my skin was healthier. The second time I saw my doctor, she said I would benefit from pt - even though my skin wasn't better yet. She had forgotten that she had initially told me to hold off on the pt.

I switched care-givers and will see my new specialist next week. I'm looking forward to getting some answers.

Tuesday, May 12, 2009

Anxiety Overload, part 2.

It's been a crappy couple of days for me. I've been feeling really lonely, I haven't been feeling good physically (the shooting pains are back), and this morning I woke up feeling really anxious. I can't seem to lose this anxious feeling.

My wedding is less than six months away and I can't stop wondering if I'll ever be able to have intercourse. If I'll ever be able to make out without experiencing pain. I don't want my fiance to agree to a life without physical intimacy, but I can't make any promises.

Some days, I have hope. And (more frequently it seems) some days I don't.

Tuesday, May 5, 2009

I'm tired.

I can't believe it's been a month since I last posted. This lapse doesn't hold any significance, really. It's not that I've been in a lot of pain this month and have sunk into a depression. Or that I've been feeling so good that I haven't thought about blogging. I write blog posts in my head all of the time. I just haven't had the energy to write.

I was out to dinner with a friend of mine who also suffers from vulvodynia and she said, simply, "everything takes so much effort." And she's right. Every day I do something to try to feel better, to try to conquer this, to try to stay positive. Every week I try to think of ways to stay connected to my boyfriend, to regain some of the intimacy we lost to vulvodynia. It all takes effort and energy that I sometimes don't have.

But recently I picked up a book that described, so uncannily, my experience with this condition that it has really motivated me to keep working. It's called The Camera My Mother Gave Me and it's by Susanna Kaysen, the woman who wrote Girl, Interrupted. I read it in one night. And then the next night, my boyfriend picked it up and he read it in one night.

It begins: "It's a yeast infection," said my gynecologist in June. ... here try this."

And continues as she goes from doctor to specialist to alternative nurse to acupuncturist (and more). We hear about her experience with boric acid and sitz baths and antidepressants - all things my friends, collectively, have tried. We read about her caustic relationship with her boyfriend who basically forces her to have sex regularly and constantly berates her, saying, "You're not doing anything about this!" (This was the part of her story that wasn't like mine and left me thankful for being with someone who understands how much I'm trying.)

This book won't leave you feeling optimistic or hopeful - it ends before we find out if she ever feels better - but there is something about seeing yourself in someone else's story. My friends with vulvodynia do that for me already, but there was something about reading a published memoir that reassured me that I'm not crazy. That this isn't all in my head.

Friday, April 3, 2009

Vulvodynia on Oprah Radio

Last week on Oprah Radio, Dr. Mehmet Oz talked with Dr. Howard Glazer about vulvodynia. It's so rare to see vulvodynia being talked about in the mainstream media, that this was a good thing to discover. I don't understand the chuckling that they engage in mid-way through this clip, but what can you do? Does anyone know where you can listen to the full show, which aired last Friday, March 27 on XM radio?

Monday, March 30, 2009

"The Pain Down There"

There's a great article about vulvodynia (pdf) in the Pain Community News, Spring 2009 issue, the newsletter of the American Pain Foundation. And it captures so well what I've been struggling to articulate these past few months without success: that, at its core, vulvodynia attacks your identity as a woman, your very sexual being. I've heard women describe this as "being broken" or "feeling incomplete." I've had friends talk about feeling "unattractive." All because of vulvodynia.

I feel all of these things. And that is harder to deal with than the discomfort and physical pain because of how my identity is impacted. Vulvodynia is chipping away at this part of me, little by little. This was most apparent the day I was in a bridal shop a couple of weeks ago, trying on wedding gowns and feeling pretty and feminine. I hadn't felt that way in forever. A part of me was sad, looking at myself in these wedding gowns, because I knew that I probably wouldn't be able to have intercourse on my wedding night. But, the over-arching feeling was that I felt attractive again.

From the bridal shop I went straight to a support group meeting for women with vulvodynia. My little reprieve from feeling like an incomplete woman was over as we talked about what it's like to live with this pain. It was a roller coaster of a day and I went home feeling exhausted and not sure what I could do to build back up my sexual identity.

This article helped. It provides some tips for increasing intimacy with your partner and for helping regain your self esteem. And it also gives some guidance on how you can manage or prevent your pain by doing things like wearing 100% cotton underwear or washing the vulva area with only water. Definitely worth reading and passing along.

Sunday, March 8, 2009

Ups and downs and ups...

I had a difficult week last week. All this time, the pain I've experienced has been mostly burning and just general discomfort. I usually compare it to getting something in my eye that's irritating. Annoying, yes, but not life altering.

But starting last Saturday, I felt a different kind of pain - a sharp kind of pain when I shifted in my seat or walked or wore jeans that were close fitting. I finally understand what a lot of the women who are in my class experience. And it really sucks. That pain has gone away for now, but I still worry that it's just under the surface.

I had a follow-up appointment with my specialist and she said that the inflammation has gotten better, but then why are my symptoms worse? She changed my treatment, so hopefully things will get better soon. I'm still trying to stay positive, doing some stretching and meditating, trying to eat healthier foods, and taking better care of myself in general. Stress exacerbates my condition, so I'm trying to eliminate that from my life as well (which is difficult these days).

Friday, February 27, 2009

Farewell, Felicity

Over the last year, I've been making my way through all four seasons of Felicity. It might sound silly, but when I was still able to do physical therapy, I'd put in a Felicity DVD and use my dilators. It would help pass the time and also help me not dread the homework.

Yesterday, I watched the last episode and felt strangely sad about it. I think in the back of my head, I had hoped I'd be done with my PT by the time that I said good-bye to Felicity. Alas... that wasn't the case, so I'll have to come up with a new show to help me get through my PT once the time comes again. Let me know if you have a recommendation!

Felicity, you were good to me. Too bad you had to ruin what was a good show by time traveling.

Thursday, February 26, 2009

Thinking happy thoughts.

I often feel that I spend too much time wallowing in stress and self pity. That's why it was a surprise when my therapist suggested I let myself feel upset more often. "You really need to let yourself feel upset about this." Don't I do that enough? And it's not helping. I think he thinks I spend too much time trying to put a positive spin on things, but, really, giving in to those negative feelings and thoughts has gotten me nowhere.

Last night in our mind/body class, we had a guest speaker who talked about the power of positive thinking. I usually don't buy into touchy feely stuff, but here was a woman who suffered from lichen sclerosis, chronic neck and back pain that left her bed-ridden for years, and who hinted at being the victim of abusive relationships, and she was smiling and upbeat and hopeful. She helped me to shift my perspective and to know that if I become more positive in my thoughts, I might actually feel better.

I have a lot of other tension in my life right now, things that are taking priority over the vulvar pain stuff, so it was really helpful to have someone say that attitude is everything because I had just been living in one big bubble of sadness. I could play the victim, but, really, how boring is that? Everyone has problems. It's how you deal with them that's the important distinction.

Wednesday, February 18, 2009

Finding support online.

I was thinking last night how lucky I am to live during a time where I can find support and resources online. And -- with the help of one list serv or website -- know that there are others like me who are struggling and searching, but finding ways to be happy even in the midst of all this sadness.

In the last couple of weeks, I joined a vulvodynia support group online and have found it extremely valuable (if you search on Yahoo Groups, you can find it and apply for admission) . I belonged to a vaginismus online support group before (and still am), but I also needed some support for just dealing with this chronic pain that prevents me from even thinking about dilating. I've posted a couple of times and within days (sometimes hours), I get responses back from other women who know what it's like, who offer up their support and advice. So I'm thankful for that.

I also joined the National Vulvodynia Association and will hopefully be volunteering for them at some point. I'm the type where if I'm DOING something, anything, it helps.

Thursday, February 12, 2009

Support Vulvodynia Research

Last night I bought a CD that anyone suffering from vulvar pain should know about: Vulvodynia: Guided Meditation to support women with Vulvodynia. It's similar to other relaxation CDs, in that it brings awareness to your body and has you relax through voice-guided meditation and soothing music. But it's very different in that it is specifically designed for women who suffer from vulvodynia. And what's especially cool about this is that Carmen Pepicelli, in producing the CD, talked to gynecologists, psychologists, physical therapists, acupuncturists, and the women themselves who have vulvar pain. So it really feels authentic.

Right now, I'm having a hard time getting past my emotional response to the audio -- when you're asked to imagine the friends and family who support you, who look at you with "understanding eyes," I can't help but cry. My boyfriend, especially, has been really supportive and sympathetic and I'm lucky to have friends who cry with me those times when I let myself stop trying to be so positive and just let myself feel sad.

All of the money raised through sales of the CD goes toward vulvodynia research, so if you know of anyone who could benefit from it, please help spread the word!

Friday, February 6, 2009

A wordling I'll go...

I put my blog into Wordle and this lovely word cloud is what I got. I'm pretty sure I need to stop using the word, "just." And apparently I feel a lot.

Thursday, February 5, 2009

Drugs aren't necessarily the answer.

Yesterday my therapist encouraged me to consider taking anti-anxiety or anti-depression medication to help me to deal with all this stuff. He's suggested it before and I've resisted. It's not that I'm opposed to these kinds of medications -- most people I know are on one or the other and I've seen genuine results. It's just not for me, not right away. I don't really understand the push for drugs as a tool, especially when I'm actively exploring other options. I need to give these other things - like breathing exercises - a chance first.

Just because I cry during our sessions doesn't mean I'm "depressed" and just because I experience anxiety when I apply the topical medication doesn't mean I'm "anxious." I have had bouts with anxiety here and there, so I definitely know what that feels like. And this isn't that.

Tuesday, February 3, 2009

I miss the homework.

I'm feeling more optimistic today. Tomorrow is my first "mind and body" class, which will help me deal with all of my anxiety and also connect me with other women who are experiencing similar issues. And what's really great is that it is being taught by the nurses at the medical center where I go to see the specialist. I feel some relief that they can provide me with some guidance about how to apply these steroids. I feel like I'm just screwing things up down there.

What's ironic about all of this is that I used to complain about having to do my dilator homework. I dreaded it and thought it was a disruption. Now I can't even do the homework because I'm in too much pain. I never thought that I would long for the days when I was doing physical therapy, but here I am. I miss feeling successful, making tangible progress, and having the support of my physical therapist (who still calls me even though I haven't been there in months). Today I made several appointments with her starting in June, so that's my goal for getting back on track. I know I can do it!

Saturday, January 24, 2009


I have been feeling pretty blah the past few days. I am in pain -- physical pain -- pretty much all the time. And this physical pain just reminds me that I'm not getting better yet, which makes me feel down. This past week I've felt pretty hopeless that I won't ever get better and that I'll never be able to have sex or just feel healthy.

It probably seems like I'm one of the lucky ones -- that the doctors have finally figured out what is causing my problems, they've prescribed me some medication, and all I have to do is follow their directive and I'll conquer this. But it's not that easy. I guess it's never really that easy. I should probably know that by now.

Like many women with vaginismus (or maybe just many women? I don't know...), I have "issues" about looking and touching myself. I feel anxious and nauseated whenever I think about it, let alone attempt it. So when I try to apply this steroid ointment to the affected area, I feel paralyzed. I have a hard time breathing. And I can feel my whole body tense. I end up just blindly trying to apply it, which I don't think is too effective.

Meanwhile, I feel the clock ticking. I feel the pressure of time, because I already have some "architectural changes" and it will just continue to get worse if I don't manage it. I worry that if I don't conquer this phobia of mine soon, I will never be able to have sex, I'll never have children, I won't feel fulfilled.

During all this, I'm in the process of planning my wedding. One of the tips in a guide I picked up recently (a hipster guide), said, "have lots of sex." Helpful. I feel like I can't escape this and it just makes me feel stressed out and anxious and hopeless.

Monday, January 19, 2009

Anxiety Overload

I'm feeling really anxious today. And when I feel anxious, I feel it everywhere. My whole body is tense, I snap at my fiance, I lose patience with my dog, I screen phone calls and want nothing more than to sit on my couch and watch Bravo.

A year ago this Valentine's Day marks the beginning of my second attempt at overcoming vaginismus through physical therapy. All was going really well until this past July when I started feeling some minor discomfort and irritation when I used my dilators. My physical therapist recommended I get checked out and when I did, my gynecologist performed a biopsy on me to rule out lichen sclerosis. The biopsy was really painful. Even thinking about it now brings tears to my eyes... I was essentially re-traumatized. The biopsy came back negative for lichen sclerosis and lichen planus (both chronic skin disorders) and so I went on my merry way, hoping it was just a yeast infection and that I'd get better and be able to resume physical therapy soon.

That was six months ago. Just a couple of weeks ago, after visiting a specialist in vulvo-vaginal pain, I learned that I do, indeed, have lichen planus. Yesterday when I was cleaning out my desk I came across five letters from various doctors telling me my test results were normal. With each one unearthed, I got more and more frustrated. Because this specialist told me that I have most likely had lichen planus for years and years and that it probably caused my vaginismus. It's just that no one has recognized it before now.

So here I am, 33, about to get married and still unable to have sex, let alone children. I'll have lichen planus for the rest of my life, the hope being that it goes into "periods of remission." Some days I'm hopeful that I will heal soon, that I'll be able to resume physical therapy. Today I'm just sad and frustrated and worried about my future.

Saturday, January 17, 2009

"Painful Sex Still a Painful Secret"

I already have this article in my list of resources, but if you haven't already read it, you should. If enough people comment, ABC News will consider doing a TV spot on vag, which is desperately needed. So take a minute, read "Painful Sex Still a Painful Secret," comment, and then please forward along to everyone you know.

What's frustrating about this is how few people -- including doctors -- know about this condition. The one time the word was used on network television, it was on an episode of "Private Practice." It was a total victory that the word was used, I'll admit that. But it was a shame that the couple was cured after just a couple of sessions (spanning maybe a week?) and also with the use of a drug. It's completely unrealistic. One day, the couple can't have sex. The next day, they're mating like bunnies. Please....

Thursday, January 15, 2009

It Has a Name!

When I was 25 years old, I came across the word "vaginismus" in a book about sexual health. It was the first time I realized that what was wrong with me, what I had struggled with for years, had a name. Vaginismus.

This was after years of seeing therapists and gynecologists, searching for an answer. I spent a lot of time and money and didn't get very far until the day I found this word and read the symptoms. I remember being in a bookstore coffee shop and my heart dropping as I read. This is me, this sounds like me.

I've never been able to use tampons or have sex. I have my vagina to thank for that - vaginismus is a condition that causes the muscles around the vagina to contract involuntarily, forming a kind of impenetrable wall. Before finding out about this condition, I thought I was alone. But now I know that there are a lot of women who are experiencing the same thing - many are like me, who know what it's called and are furiously working toward overcoming it. But many more were like me pre-25, living in the dark, afraid and hopeless.