Impact of Childhood Experiences

During my first gynecological appointment, the nurse asked - as I was sobbing - "have you ever been sexually abused?" I was stunned and also embarrassed that this exam caused me to cry so much that someone would think that. For years, I wondered if I had been sexually abused without remembering it. Nothing else made sense for explaining why I was the way I was. It wasn't until I was in my mid 20s that I determined - with the help of a sex therapist - that I hadn't been sexually abused. I still struggled with understanding why I was afraid of sex, why I couldn't insert anything or stand to look at my vulva, why I never saw my college boyfriend of over two years without his boxers... But at least I could stop worrying that I had repressed memories of sexual abuse.

About five years or so ago - again, with the help of a great sex therapist - I figured out that an experience I had as a middle-schooler might have had a significant impact on me. When I was in the sixth grade, after multiple UTIs, I had a catheter to determine if there was anything seriously wrong. It was a painful and humiliating experience. Imagine being in a room with a bunch of strangers, having them insert a tube into your urethra, and then being asked to pee in front of everyone, but being unable to do so (to the point where they eventually turned on the faucet to try to induce me to go). I was frightened, embarrassed, and in pain. It was my first experience inserting anything into that area and it was negative and confusing.

Even though I always had a hunch that this catheter contributed to my vaginismus, it was always just that - a hunch, a best guess. It was important for me to find the "cause," but could an isolated incident (so long ago and so brief) have really caused this lifetime of struggle?

Yes, according to psychiatrist Dr. Anne Hallward. She's conducting a study about the impact of childhood medical procedures on women and she's looking for participants. Here's more about it - please contact her if you're interested and let her know I sent you:

Research on the Impact of Childhood Medical Procedures:

It is not uncommon for girls to get a UTI when they are quite young, and to undergo various medical procedures to both diagnose and treat the infection. To date, nothing has been written about the impact of such invasive genital procedures on the life of these girls as they grow up. I am looking for women who had a urinary tract infection (UTI) as a child and had treatment for it, including either catheterizations, hospitalization, or other urethral procedures like dilation, or imaging studies. I would like to schedule a time for an interview that may last up to an hour about how this experience has affected your life as an adult. I am interested in looking at how such medical trauma is both overlooked in the life of a child, and may have far reaching effects on your relational, sexual, professional and emotional life. If you would like to participate in this research, your name will be kept confidential and any identifying information will be changed in publications. Please contact Anne Hallward MD at ahallward(at)gmail.com

I received an email with this description through a vulvodynia support group I'm in and was so relieved to see that I'm not alone in my experience. I talked to Dr. Anne last night and she was a kind and compassionate listener and asked good questions. I was amazed to learn that other women have had similar experiences that impacted them through adulthood. After almost every issue/feeling I shared - no matter how embarrassing - Dr. Anne let me know that I wasn't alone and that other women reported similar feelings and experiences.

If this resonates for you, please let me know in the comments section - even though I don't respond to everybody, I really appreciate hearing from you! You can also email me at livingwithvaginismus(at)gmail.com

Finally, I encourage you to get in touch with Dr. Anne Hallward if you've had a similar experience. I'd love to see her study published - both for letting women like us know we're not alone and also for influencing practitioners in how they conduct medical procedures with children. Maybe we can help make a difference!

Patience

Let me preface this post by saying that my husband is very patient, loving, and supportive. I know this and am appreciative of him everyday and tell him so.

But.

One of my biggest pet peeves as related to all this stuff is when a practitioner - especially one I don't really know - says, "Your husband must be very patient." This happened to me today when I saw an ob-gyn for the first time. I almost said, "I'm very patient, too," but instead I just rolled my eyes while she was writing in my chart and said, "He is."

What this implies is that there's something wrong with me and that I'm lucky to have someone that puts up with me. What it doesn't imply is that we each have our own issues and we support each other equally - it's not one sided.

I know that this statement is meant as a compliment, but it's insensitive. What if my husband wasn't patient and we were having problems because of it? If I haven't divulged anything about him, please please please don't say this, all you doctors out there. It just undermines all the progress that I've made against this idea that I'm broken or not a real woman or that I need someone to take care of me. I might be overreacting, but this statement has been said to me so many times and I'm really tired of being polite and nodding along while inside I'm pissed off.

My friends and I have joked about writing a book that chronicles the unbelievable things that health care professionals have said to us in our quest for healing. It would be meant as a kind of handbook for doctors for what not to say when treating someone with vulvar pain. Now... this statement is one of the more benign ones we've heard, but it would still make the list.

What say you guys? Any doozies that professionals have said to you that left you speechless and seething?

Trying to stay positive

There's a funny thing that happens whenever I have new pain or irritation or itching or fill-in-the-blank. I immediately rush to the worst case scenario, thinking that on top of everything else, I'll have to live forever with this new symptom. This is really not good or productive thinking and I'm doing my best to override it, but it's hard, knowing how the last few years have gone.

In the last week, I've been experiencing a real burning kind of irritation in addition to itching. Because I live in a different state from my vulvar specialist, I had to pick an ob-gyn at random, which is terrifying. I found this person through the NVA, so at least I know they have experience with vulvodynia patients, but it's still anxiety-inducing. I see her on Monday, and I hope it's just a minor infection that can be cleared up with meds. Because right now it's putting a hold on everything else.

Despite this recent development, things have been going pretty well with physical therapy. I've been able to insert the large dilator and my husband and I have been attempting penetration (with no success yet, but we're trying). After repeated attempts, I decided this is more a mental issue than a physical one at this point, considering how well I do with my dilators and during my physical therapy sessions. I feel anxious and scared and my muscles tighten up, making it impossible for anything to get in there.

I was prescribed valium to try to relax a bit and have started dealing with my emotional issues in therapy. Does anyone have experience with valium? Tips? Things to avoid?

So now I wait until Monday to see what the doctor thinks. In the meantime, I'm trying to stay positive.

In a year...

I can't believe it's been over a year since I last wrote. There have been moments in the last year where I've been tempted to write, but - for whatever reason - haven't. I've been in a funk lately, focusing on just the negatives - the pain I'm in every day, the inability to have intercourse (still!), the fact that I'm almost 35 and eventually want kids, but can't, and on and on and on into the self pity spiral I go.

So...instead...I am going to focus on the good things from the past year and try to give myself a little credit where I can.

1. The day after I moved to a new town, I had an appointment with a new physical therapist. That didn't work out - definitely wasn't the right fit (is this like dating or what?), but the fact that I didn't put it off is a definite positive.

2. I found a new physical therapist who is very encouraging and supportive in a kick-butt kind of way. She has confidence that I will conquer this and that, while I'll always have to deal with the skin issues, I shouldn't let that deter me from moving forward. When I feel hopeless, I try to remember how far I've come rather than think about how far I have left to go.

3. I have been seeing a new therapist who I really like. We've been focusing mostly on dealing with my dad's death, but I feel like the more progress I make in that arena, the more space I have to deal with all my v stuff.

4. With just occasional flares, I've been keeping the lichen planus under control even though applying the steroid ointment and estrace is still difficult for me.

5. I'm on an every-six-months cycle with my vulvar specialist. That has to be a good sign, right?

6. Even though I've moved away, I've continued to be close to my two "vulvodynia" friends who I met at a class over a year and a half ago. They are such an amazing support to me and are truly inspiring. I think I would have lost it a long time ago if it weren't for them.

OK...so 6 things is a good start. I also just celebrated my one-year wedding anniversary and, considering all we dealt with this year (new town, new job, new dog, the year anniversary of my dad's suicide, another memorial service, etc., etc.), I'm really proud of us. We're in it together.

Here's to the positive...

Worrying...

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.

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: http://abcnews.go.com/2020/story?id=8261812&page=1#
for more information.

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.