Sunday, May 08, 2016

A Journey With Vulvodynia


*This is the first guest post in a series entitled "Share Your Story".  I appreciate the impact that people's stories can have on my life; I understand them and the world a little more.  This writer has asked to remain anonymous due to the sensitive nature of the topic and I am so proud of her desire to let other women know that they are not alone and that there is always hope. *

The wedding day. It’s a big exciting day in one’s life. I know I was excited for my wedding day. Excited to commit my life to my then fiancĂ©. As someone who abstained from intercourse until marriage it seemed like an especially big day. Awkward, but exciting. Does anyone’s wedding day go completely as planned? I know mine sure didn’t. There were some bumps in the day and then the wedding night was not what I expected.

What is vulvodynia and how can you help treat it? A personal journey.



I am sure you know where I am going with this. What do you do when sex isn’t how you imagined it? When it doesn’t live up to the gift God promised it to be? When you have allowed Hollywood to form your beliefs about sex in a totally unrealistic way? When you have grown up feeling like sex is “bad”, “dirty” etc if you aren’t married but then you are to switch those thoughts the moment you say “I do”? When you have somehow come to believe that it’s your job as a wife to please your husband sexually?

That night we didn’t have intercourse. I was in excruciating pain and crying while we fumbled our way through trying to find a position that would work for me. I went to sleep crying but still feeling hopeful that we would figure it out during our honeymoon. Our eight day honeymoon was full of pain (physically and emotionally). I couldn’t do it. Why couldn’t I do it? I should be able to just push past the pain but I couldn’t!

We continued to try intercourse throughout our first year of marriage. We never had any luck. It always ended in me crying, my husband feeling so sad for me and both of us angry that this wasn’t how it was supposed to be. I convinced myself that this was my problem. That I was just being weak. I was always hopeful and always thought, this time it will work, but it didn’t. Failure. I was a failure. My mind was screaming that at me many times a day. People joked around a lot with us, asking questions like, “So…how’s married life?” *wink wink* and we would chuckle but didn’t talk about this big problem we were having. This wasn’t just about sex anymore. It had taken over my self-esteem. It caused me to feel like I wasn’t living up to my duties as a wife. It was traumatizing me. My husband felt like a failure because he couldn’t help. Couldn’t console me. Couldn’t fix the problem for me, for us!

After a year I reluctantly told my doctor. Talking about sex wasn’t something I was accustomed to. I never talked about it growing up. My doctor referred me to a gynecologist. She was very kind. She asked me lots of questions. Checked me and was unable to do an actual internal exam as I was writhing in pain on the table when she even attempted to insert a finger in me. She told me that I have vulvodynia and gave me paperwork explaining more about it. She also gave me information for a pelvic floor physio therapist and a card for a medical supply company where I could purchase dilators (more about that in a minute). I left feeling happy that I wasn’t just imagining all of this and thankful to have an action plan. I made an appointment with the physiotherapist (whose office was about an hour from my home) and called the medical supply company to order the dilators.

The dilators came in the mail before my first physio appointment. I had decided not to try them until I saw the physiotherapist. My first appointment made me very anxious. I didn’t know what to expect. She talked to me then hooked me up to a biofeedback machine that read the muscle tension in my pelvic area. My muscle tension was INSANE. It was crazy to see the tension on a graph on a computer screen. She showed me a line where “normal” muscle tension should be and my muscle tension was WAY above that. As soon as she touched me the tension increased and I basically spent an hour trying to relax as much as I could to get my muscle tension below the “normal” line. It never happened. She told me it could take 6-12 months of appointments to learn how to release those muscles more. She showed me how to use the dilator (imagine 7 different sized candles…different in length and width) and I was to start with the smallest one and try and get it in me. She gave me numbing cream to use as well and a bunch of other exercises to do daily. I saw her regularly for an entire year. It was expensive, time consuming and painful but I knew I had to give it my best effort. After the year was up I wasn’t much better. Very marginal improvement. She told me that the best chance of me being able to ever have intercourse would be to vaginally deliver a baby.

Ok….so I am supposed to get pregnant without having intercourse? Right.  For about a year I was just discouraged and didn’t do anything about my condition. I occasionally would try the exercises again or attempt to have intercourse but it never worked. I felt very alone. I could talk to my husband but no one really talked about sex other than joking about it. One person that I confided in told me that I am lucky my husband hadn’t left me yet. Ouch! Of course I had thought these thoughts. Thought that I was undeserving of his love. Thought that I was failing him but I also knew deep down that I didn’t go into our marriage with a secret. I had no idea this was going to be a problem. I was blindsided just like he was. And we both vowed to be together in sickness and health….this is a sickness. Most people who I told didn’t know how to respond and mostly responded with “marriage isn’t only about sex”…thanks. I think I know that already. Or they responded with pity for my husband. I so badly wanted someone to just get that this was hard for me too. That I carried a burden that was isolating me and making me feel broken and unworthy.

About three years into our marriage I went back to my family doctor and talked about my options for getting pregnant since intercourse wasn’t possible. He gave us simple instructions for what he called "at home artificial insemination.” It worked! I got pregnant (there were some miscarriages along the way and those were devastating and made so much of this extra hard on me but that’s another whole post in and of itself). We had our first child a while later. The delivery was horrible. Being checked for how dilated I was just about made me pass out. Delivering this baby was just awful. I know it is for everyone but no one can expect that kind of pain. Of course I don’t know if my pain was worse than the average person’s pain due to my condition…but I feel like it likely was. I needed multiple episiotomies and I tore. Lots of stitching after. But I had this perfect baby and I had hope for our sex life.

Once I was fully recovered we attempted intercourse again. Not any better. Actually it was worse. I couldn’t believe that delivering a baby didn’t help. I had clung to that possibility and we were let down again.  When our child was over a year I went in to see my gynecologist again and she said she could do a surgery on me. It was called a vestibulectomy. I had surgery the next week and woke up feeling like I had delivered a baby again.  Once healed we tried again and I continued to experience so much pain and was still unable to even use a tampon.

We did the artificial insemination again and had our second child. The delivery was much faster and because this baby wasn’t posterior I managed to deliver without episiotomies and just one tear. When this baby was five months old we decided to try one more time to have intercourse and agreed that if this didn’t work we would give up. We couldn’t continue on trying and being disappointed. Well….it worked! Almost no pain! After SEVEN YEARS of marriage we finally had intercourse (and I am now able to use tampons too which is an added bonus). Seven years, you guys. It was SUCH a long journey but we pushed through and God was faithful.   

{Thank you for sharing such an intimate part of your story.  Please leave a comment for our first guest poster in the series to encourage her}

10 comments:

  1. Louise, such a great way to learn about the different challenges that are faced by us every day. To your guest poster, thank you for sharing your story. I can't even imagine how much pain (emotional and physical) you experienced on this journey and I'm so glad that things are better for you now:)

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    1. Thanks for commenting, Mandeep, I know she appreciated is. It's my hope that we can all learn something from those around us...we really never know what people are going through.

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  2. Thank you for sharing. It definitely is not something that people talk about, and probably more common than is known.

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    1. I read that it could be up to 16% of women (from Wikipedia) which seems so high to me! I had no idea.

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  3. Your guest writer was very brave to share her story. I was totally unaware of this condition.

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  4. Anonymous5:12 PM

    Wow, thank you for sharing your story. I can only imagine the silent struggle you must have gone through. I hope that in sharing your story, someone who is struggling silently will feel less alone.

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  5. Anonymous8:19 PM

    Thank you for sharing. It's given me some knowledge that this is a real issue and something I should talk to my doctor about.

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  6. I can't even begin to imagine the pain both physically and emotionally that must have brought and I'm so SO glad that it's better. Thank you so much for sharing something that is so intimate and not often talked about. You are so brave and I'm sure there are others struggling with this that need to know there is hope and that they're not alone. <3

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  7. You are a brave and strong woman. I can't imagine how those seven years must have been for you and your husband and how you must have clutched it all so close for so long. Thank you so much for sharing your story.

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