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What I Learned About My Health

Jul - 16 - 2008
Nicole C. Engard

I want to preface this post with a warning. What’s about to follow may make some people uncomfortable, but it’s an issue I feel strongly about and want to educate others so that they don’t have to go through what I’ve gone through these past six (nearly seven) years (so far). If you think you can’t handle a post on woman’s health, then I advise you to stop reading now.

*   *   *

A bit of medical history, all leading up to where I am today. When I was 13 I was diagnosed with a imperforate hymen (I’ll let you librarians research what that is – since that’s not what this post is about). I had a hymenectomy and was A-OK. When I was 14, I was diagnosed with Patello-Femoral Syndrome in my right knee, I did physical therapy and sort of grew out of it (I still have minor pain once in a while). When I was 21, I had surgery to repair torn cartilage in my right wrist. When I was 23, I had surgery to repair a torn ligament in my right shoulder.

Well, that’s not too bad – why the warning? That was just some background that could have something to do with the condition I’m being treated for now.

As many of you know I’ve been complaining about back pain and physical therapy for several months now (since February), what I wasn’t complaining about was the pain and drugged months before that. But why all the drugs and pain and therapy? It turns out that I suffer from a condition that many women live with their entire lives without realizing it’s not normal! Which is why I want to write this post to educate as many people as I can so that they don’t have to go through a life of pain.

During that timeline I went for my first visit to a woman’s doctor. I left that office without having a successful exam done. Why? Pain! The doctor was unable to use any of her instruments without making me scream. For those of you who don’t know – this is not normal! But how would I know? I’d never been there before. A year later I went to a new doctor for my annual visit and given her experience, she didn’t let a little pain stop her from doing her job. She ended my visit by telling me that the pain was all in my head, probably from the trauma of my first surgery.

During the years that I saw that doctor, I went back to her several time complaining of extreme pain – this from a woman who waiting over a year to have surgery on her wrist because she was going to England to study. I have pushed through a lot of pain in my life – and for me to go to the doctor because of pain is saying something (ask my hubby – who always tells me to go to the doctor when I don’t want to). Anyway, my doctor spent years telling me it was all in my head. Telling me that I had control of my muscles and could stop the pain whenever I wanted. Can you imagine what that did to my morale?

One day I was in the bookstore waiting for my husband to finish reading his role-playing games when I saw a headline that made me stop. The article was about a woman who was unable to have sex with her husband due to extreme pain. I read the article from start to finish and found a medical term I could bring back to my doctor – vulvodynia. Armed with the name of a possible condition I felt a bit more confident – a confidence that floundered as my doctor once again told me that it was improbable that anything was wrong with my physically – and that it was all in my head. I asked to see a specialist anyway, just in case and thank goodness I did!!

I didn’t even have to spend more than 2 minutes in the specialist’s office before she diagnosed me with vulvodynia and vestibulitis. It turns out that for years doctors have been telling women with my symptoms that they’re crazy – maybe not in those words – but basically they’ve been saying that those muscles are built to open and that the fact that they can’t/won’t is all in their heads!

My new specialist started a program of treatment that lasted more than a year. We started with shots of muscle relaxers into my pelvic floor muscle. In addition to that I had to take oral muscle relaxers – me – someone who gets tired from a normal dose of Motrin. After that I had to go to physical therapy – yes they have therapy for this! Therapy consisted of muscle massage and strengthening of my legs and core. By the end of my treatment my pain had come down from a 10 to a 3 and I finally felt better about myself – knowing that it wasn’t all in my head.

The problem is that vulvodynia is something that you have to live with your whole life. And so after a couple of years the pain came back. I went back to the specialist to try a new treatment. This time the drug dosage was upped and I turned into a zombie. I had to start drinking coffee (something I don’t normally do) to get through the day – I almost fell asleep at the wheel more times than I can count and I was cranky all of the time. When I complained to the doctor we went back to shots! Then back to physical therapy. This brings us to this February.

This time around I have found a physical therapist who takes a different approach to treating pelvic floor pain. The fact is that our entire body is linked – we know this, but yet we never seem to treat it that way. As my new therapist went about her treatment, she found that by fixing my pelvic floor pain she was breaking other parts of me. At first it was my lower back. I couldn’t walk or sit or move without pain. I went through PLA like this! Next it was my hips. Every step I took, I would feel my leg slide out of the hip joint and hit my groin – causing me to gasp and nearly fall over. I went through CIL like this. Next it was my upper back and shoulder – and I got to walk up the hill to my hotel at SLA like this. Today it’s my knee (and still my back).

But even with all of that my original pain has gone from a 10 to a zero for the first time in my adult life!! This holistic form of treatment is not only fixing one problem, but it’s fixing problems that my previous physical therapists didn’t fix quite right.

Why am I telling you this? Not for sympathy – but to educate you! If I had had an educated doctor for that first visit, I may have been diagnosed much earlier on. If I had known about the condition before going to the doctor, maybe I could have asked if it was a possibility. I don’t want other women to go through everything I’ve gone through – I want them to know that it’s not all in their heads! I want them to know that they’re not crazy – and that it’s a real and treatable condition.

Some people ask me what causes this – the fact is that they’re not sure. Since the condition wasn’t even recognized for so long there is little data out there. One theory for me is that I have scar tissue from my first surgery or that the trauma that led up to having that surgery caused damage. The other possibility is my posture – which was been altered due to my knee and shoulder problems. The National Vulvodynia Association has a list of possible causes as well.

Well, I think I’ve droned on long enough – I hope you learned something – and I hope you share it with all the women in your life that you care about. It’s important that we’re all more educated so that there are fewer of us out there living with pain.

As for me, I’m doing great!! I still can’t walk long distances without pain – I can’t sit still or upright for long – but I know I’m getting better!! I know I’m going to get my strength back and hopefully this time it will stick!!

If you’ve made it this far – I’m glad I didn’t make you too uncomfortable and I’m glad I was able to teach you something new today!

19 Responses so far.

  1. Chadwick Seagraves says:

    Thanks for being brave enough to share your story. I know it will help others. Sometimes we realize that there is still so little that we know about medicine & the human body. Glad to hear the treatments are working. As someone who has dealt with chronic pain for over 10 years, I REALLY can understand.

  2. Brandi Tuttle says:

    Nicole, thank you for your honesty and willingness to share. I hope that you continue to get better. If you only help one person, it’s worth it, right?

  3. Jenica says:

    It’s sad how frightened we are as a culture to talk frankly about our health. So brava to you for sharing, and offering your experience as a help to others. One step at a time, and maybe someday we’ll get to a place where we aren’t afraid to be honest about real problems.

    And I hope you continue to find good people to help you feel better!

  4. Abigail says:

    Thank you for sharing this with us! It is truly what you have been learning about your health and the health of others. Glad to hear you are finally on a path towards being pain free!!

  5. Cindy says:

    Yikes! Quite a story. I’ve had vvs for 20 years and make a run at the doctors every few years or so. This time I can afford the PT (that won’t take insurance) – but she can’t seem to soften my tensed pelvic floor. (I wasn’t able to handle the shots). Sounds like you found a good PT. Good luck and thanks for your story.

  6. JanieH says:

    Thanks for sharing this Nicole and I hope that you continue to feel better each day. I have a very similar story about my own health — it took me 5 years of misery and 7 doctors telling me it was all in my head before I was diagnosed with PCOS. Once I started on the right medication and learned how I could control the condition, I felt so much better. Living with a chronic condition is not easy, but knowing what you are dealing with is half the battle.

    I am so glad that you kept searching and that you have found an answer. Hopefully others who are struggling and not getting a diagnosis will take this as inspiration to keep trying until you do.

  7. David Bigwood says:

    I also live with untreatable pain, from an auto accident about 5 years back. Physical therapy helps, I do mine every night. Find a good therapist, shop around. It is a very important decision. Alpha Lipotic acid reduces my pain but does not remove it. No side-effects I can detect. It works on the whole body. When I forget to take it in the morning, I know all day long. For specific spots I use a few drops of Oil of Oregino. Stops nerve pain close to the skin. Don’t use on sensative areas. I got a few Vicadon (Rx) I save for really bad days, but those put me in a fog. It has been quite some time sine I had to take one.

    Pain is real and suffering with it or the treatments does affect the quality of our lives. It is a serious problem and one that should be taken seriously. I wish you well in your treatment.

  8. Michelle says:

    Thanks for sharing your story, I really appreciate it what it took to do that. I am so happy that you are finally getting the care that you need and hope that everything continues to improve every day so that you can get back to a normal life.

  9. Emily Lloyd says:

    Awesome, awesome, awesome post, Nicole. I’m so glad your pain situation has gotten better. I second Jenica’s comment about it being sad “how frightened we are as a culture to talk frankly about our health” [including mental health--and also to talk about things going on in our lives]–it seems so unnatural to me, one of the hardest things about work culture–that you can’t really share how you’re feeling, yet you’re with these people all the time.

    Anyway, good on you. I’m sure this will end up helping not one, but many.

  10. Cheryl says:

    Thank you for sharing this. I read your blog because you never fail to introduce me to great online resources, but I never expected to be moved so deeply by a personal story. It can be hard to share details like this, but it truly was for a good cause and I’m grateful that you were brave enough to share it. Take care of yourself, and keep us updated.

  11. Jennifer Hanson says:

    Thanks. This is a great post. I guess my main thought is about the “all in your head” thing. Anybody whose doctor is telling them this needs to find a second opinion. I’m glad you were able to find a way to something that works for you, but sorry that it took so long. Hang in there.

  12. Roy Tennant says:

    As someone who has had little to complain about physically, you have my complete sympathy. I cannot imagine living with the kind of chronic pain you and others have reported here (besides putting my back out upon occasion), and I hope I never have to move beyond trying to imagine it. I particularly appreciate you mentioning being at certain conferences when you were dealing with specific painful episodes. This serves to remind me that you never know what the person in front of you is going through at any one time, whether it be a painful back or a painful divorce, and it reminds me to not assume too much about the health or well-being of people with whom I interact. We can all use tender mercies, but even more importantly when we are feeling at our most vulnerable and least able to deal with the world around us. Thanks for the reminder

  13. Karol Bell says:

    Thank you for being brave enough to share that story.
    It makes the point that no matter what our symptoms, that we educate ourselves about our health and not give up in trying to find an answer.
    I have had various health problems over the years, and have had to push through a lot of bull to get to someone who could help me.
    I have also seen people who go to the doctor and are given several prescriptions, most of which end up causing MORE problems because of side effects. Then more medicine is prescribed to handle the side effects and they end up worse than they were before they consulted a doctor!
    Lastly, (or maybe I should list this first), prayer, for me, was the thing that helped me through the times when I was in pain and could not find any relief.
    Bottom line, educate yourself and keep trying doctors until you find the answer!

  14. I sure do appreciate your willingness to “put yourself out there”. I know it has already helped someone out there. I will keep your continued recovery in my thoughts.

  15. Hi Nicole,
    Thank you so much for sharing your story!! I also have vulvodynia and it took me 10 years to get a diagnosis, so I can appreciate your struggle. I’m so glad you’re on the road to feeling better!! For me, naturopathic care and an estrogen cream have worked wonders. I hope you continue to live pain-free!

    I’ve also just started a website called CureTogether (http://www.curetogether.com) to help find a cure for vulvodynia – right now people can rate and review what worked best for them, so we can all learn from and help each other, and eventually patients and researchers will come together to do research studies.

    Thanks for letting me mention it, and thanks for posting about vulvodynia! The more we can get the word out, the better it will be for everyone suffering in silence.

    Alexandra
    Co-Founder
    CureTogether.com

  16. Alex says:

    Thanks for posting this, Nicole. I know it took a lot of courage but it’s important, as others have more eloquently said above, for us all to talk more frankly about our health.

    I can’t imagine what it’s like to live with chronic pain, but I can say I’ve been through unusual medical diagnoses myself: I’m 27 and I have osteoporosis. Nope, I was never anorexic or a chain-smoker, just got dealt a crappy genetic hand! I’m lucky to have great medical advice from professionals who take my case seriously – we need more of that, and we need to be more open – and less embarrassed – about health issues.

    Again, thanks.

  17. Michael Stephens says:

    A very brave post. I really believe this is one of the most important aspects of blogging and other tools: sharing, openly and honestly– and getting support. I agree with the above that you’ve helped people and we need more of this type of sharing

    Best, M.

  18. jessamyn says:

    Hi Nicole, thanks for posting this. I’m so happy to hear that with the help of GOOD INFORMATION you’ve been able to help heal yourself and help others at the same time. Mazel tov.

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