Living with Vulvodynia: Part Two

Yesterday I shared Part One of my story and today I will wrap it up.

Living with Vulvodynia

I left off telling you about my physiotherapy treatments with Caroline Allen. She was able to breakthrough the horrific burning flares I would experience for weeks on end. These flares would start for no apparent reason and the burning would be relentless day and night. It was torture. Looking back now I really don’t know how I did it. I think I am having a bad day now until I remember what it was like just a few years ago.

I saw Caroline every week for a number on months and we tapered it down to once every 3 weeks. I was still in pain everyday though and the location of the pain and the sensations varied daily. Some days I would be stinging like peroxide being poured on an open wound. Other days it would be quick electrical shooting pains. Sometimes it would feel like I dragged my bottom on a carpet and got rug burn. However, if you were to physically look at my v, you wouldn’t see anything out of the ordinary. It’s all muscles and nerves I believe.

Even with my PT appointments, I still experienced pain flares. I noticed they would come on with stress and I know now it’s because of me tightening up my pelvic floor muscles on a subconscious level. It’s very hard for me to relax them. Caroline said my muscles were both tight and weak…what a great combo. Kegels are bad for a person with pelvic pain. For example, if you held your hand in a fist for years on end, it would be pretty sore right? Same thing with the V. I was holding it tight for years and years so doing a kegel just tightens the muscles even more. You must first get the muscle to loosen and relax BEFORE you start strengthening.

In Ontario, I found a gynecologist in Ottawa who did a vulvar pain clinic every Thursday. I would see her every few months. She had the worst bedside manner and was always so fast. Just in and out in under 5 minutes. I had no time to ask questions. The last time I saw her she had a student doctor with her. They did the exam and were talking about me like I wasn’t even there. I thought I had another condition because they were mentioning all these things I didn’t understand. When I asked them, they said “oh don’t worry about it”. Yeah right. As if I won’t worry! Needless to say, that was the last time I saw that doctor. I lost faith and trust in her and would not go back.

My family doctor in Ontario is a nice man who has been my doctor since I was a teen. He told me that I was his “hardest patient” and he didn’t know how to help me. He said he “doesn’t want any more patients like me”. Nice eh? I felt like I was just wasting his time. I would give him info on vulvodynia and he would just put it in my file without even looking at it. So much for finding a doctor who was willing to research and figure out WHY my body was acting this way. The one good thing about him was that he was will to work with my American doctor and prescribe the medications she suggested.

Another thing I wanted to mention about doctors since I am on that subject is that I had one actually LAUGH in my face when I told him I had vulvodynia. I was at the ER for another reason and he asked if I had any medical conditions so I told him. Then he laughed. I almost started crying. This is the attitude I get from doctors in Canada. They either don’t care or are too busy or they think its funny like this jackass. I’m sure if his penis was in excruciating pain or if his daughter was in so much pain she couldn’t function, he wouldn’t laugh.

Finally, I just gave up on finding help in Canada. I had been a member of an online support group and people were recommending Dr. Coady in New York City. I spoke to my parents and they told me to book an appointment with her. My dad and I made the 10 hour drive to New York City in April 2009. We drove down on a Sunday and my appointment was the first thing Monday morning. I was really nervous because I had been traumatized by doctors before and was hoping that I wouldn’t have wasted my dad’s money if she was another dud.

I knew right away she was different. For example, they had me give a urine sample. In the bathroom they had those moist towelettes that you are supposed to wipe with before you pee. There was a sign above them that said, “Vulvar Pain Patients Do Not Use”. THEY KNEW THAT THESE TOWELETTES WOULD CAUSE US PAIN”! They have chemicals in them that can irritate a girl like me. I was in shock and impressed at the same time. My hopes were starting to rise.

Dr. Coady brought me into her office and took the most detailed medical history ever. She literally went right back from when I was a baby to now. That took about 40 minutes or so. Then I went to the exam room where she did her exam. I would say I was in there a good 40 minutes to an hour. She looked everywhere and took a closer look with a microscope. She said she couldn’t believe that my doctors never said anything about my skin because it was so thin you could see through it. I was severely lacking hormones in my v skin! I told her the doctors just scoffed at me when I mentioned hormones before. I knew she was onto something.

After the exam, she took me back into her office to discuss the findings and develop a treatment plan. It was like a dream come true to me. Finally a doctor who cared enough about me to take the time to figure this thing out and help me get better. She really put my mind at ease and I was comforted knowing that I had her on my team and she knew more about this condition than me. In fact, she is in the process of writing a book about it!

The doctor’s visit cost me just over $1000 and I got about 2.5 hours of her time. It was worth every single penny. The trip cost us over $2000 when you factor in food, hotel and gas. I am grateful for my dad for paying for it. I certainly couldn’t afford it. I went home armed with a treatment plan and feeling of hope and like I was getting control back.

However, I had great difficulty getting the much needed medicine to Canada. She prescribed the topical hormones in a base of olive oil and I wasn’t allowed to get it into the country. I was completely devastated. This is another prime example of how my country has screwed me over.  It was a HUGE ordeal to finally get it here, but I did get it a number of months later. It helped me so much!

My dad and I went back to NYC in September 2009 and Dr. Coady thought my skin looked improved in most areas. I was still getting the dreaded clitoral pain though. This is the worst pain imaginable. Every movement I made I felt like there was a needle poking me. This area is extremely sensitive because we have so many nerve endings there. I would breakdown into tears each time it hit. I still can’t handle it to this day and live in fear of it hurting me.

So where I am today? I am going through a divorce from my ex-husband after a marriage of 10 years. I know the vulvodynia played a huge role in our breakup. My ex couldn’t handle the fact that I couldn’t and/or didn’t want to have sex because I was terrified of the pain. I still associate my vagina with pain and I don’t think of it as a sexual organ.  When I met John, I told him right away about my condition. I didn’t want to be with someone who wasn’t understanding and it would be up to him if he wanted me still or not. We are still together so I guess you can say the v issues didn’t bother him. He is understanding about it.

I am currently living in Nova Scotia where I don’t even have access to a family doctor. There is a severe shortage of doctors in many parts of Canada and my area is one of them. If I had to go to the doctor, the only place I could go would be the ER where I would wait hours and hours. In Canada, you need a referral from a family doctor to see a specialist like a gynecologist so I don’t even have one of those in my country either. It makes me so upset that we have this “free” health care system here and I can’t even use it for my condition. I have to pay thousands and thousands of dollars to get proper care in the US.  I’ve been to NYC 3 times in the last year and spent well over $6000 just on the trips and doctors visits alone.

You know what the real kicker is though? Vulvodynia is NOT RECOGNIZED AS A DISABILITY IN CANADA. It is in the US though. So not only do I not have access to medical care here, but they are leaving me to starve. I have no income beyond the little amount I earn with my blog. It pisses me off so badly that its not recognized. I can’t sit down without being pain and I can’t stand even somedays. The most comfortable position for me is lying in bed.

I have tried multiple times to get Canadian doctors to help me apply for disability but none will. My family doctor said, “you pretty much have to be on your deathbed before they will give it to you”. No I am not dying. However, I am strapped with a life sentence of pain and suffering and somedays I wish I was dead. Why does no one care? I don’t get it. I wish people could understand how horrible it is to suffer day in and day out in the most private area of your body. It affects every aspect of my life. I sold my house and quit my job because of it. I can’t walk on somedays. I used to love biking and running and now those two activities are gone.

The worst thing is the anxiety and fear I live in each day. I am terrified to go anywhere because of the pain.  Dr. Coady thinks I have PTSD because of the horrible past medical treatment I have received. I am so scared of something happening to me in that area and I won’t be able to go anywhere to ask for help. It’s not like I can just hop on a plane to NYC on a whim. These are just a fraction of the fears I live with on a daily basis. I wish I could afford to talk to someone about it.

I am grateful for the friends I have met this past year. They are all really understanding and caring. Cindi from Little Yayas knows my story and I am glad that I can talk to her when I need to. I lost most of my pre-pain days friends. They don’t understand and one comment in particular really stands out to me. My one friend callously said to me after I was telling her about the pain,”oh your poor husband for not being able to have sex”. Then and there I knew she didn’t “get” it. If she did she would know that I was suffering and wouldn’t say something like that.

Today I am still experiencing pain on a daily basis. Some days it’s just a twinge or a flicker here and there…those are the “good” days. Other days, it’s the constant and very painful…those are the “bad” days. I pray every single day for it to go away. I wish it would. I wish I could have my life back. I wish I was normal. I wish the suffering would end. I’m tired…very very tired of it.

I hope that this week has made people more aware of vulvodynia and it’s impact on women. I will post later on today on things you can do to help raise awareness.

Update 2018: A lot has changed in 8 years. My NYC doctor retired so I haven’t been there since 2010. I’m back in Ontario now with a new family doctor, but haven’t really asked him anything about helping me with the pain. I’ve pretty much given up on doctors.

The one thing that has helped me tremendously is my weekly pelvic physiotherapy appointments. I’ve been going weekly for over a year. She’s been working to loosen up the muscles and having some success. I always feel better after my appointments. However, I find as I near closer to the weekly appointment, the pain slowly creeps back. I still need to go weekly which isn’t cheap, but I’ll pay anything if it works.

Overall, my pain has improved over the years. I still have good days and bad days.

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