My Journey to Healing after 5 years with PNE/PD

[ladylady]

Hi everyone,

I've come on here once in a blue moon without much contribution, and now that I've had success in treating my condition, I wanted to share my journey with all of you in case it helps you with yours.

First a very brief history of my condition. I'm just going to call it pelvic floor dysfunction because different practitioners have different names for it. My pelvic area hurts and it might be an entrapped nerve, but since I refuse to let anyone cut me open, well it's just kind of guess work, isn't it?

My pelvic issues began about 4 and a half years ago after a series of chronic yeast infections. I had a stabbing pain at the entrance of my vagina on the right side, making intercourse impossible. Doctors were clueless and useless and gave me bad advice. Finally about a year ago my partner did endless research and found out about pudendal nerve entrapment, pelvic dysfunction etc etc and he found that the first line of treatment is physiotherapy. We found a physiotherapist in the city who specializes in this stuff, but after 7 months of treatment, it became clear it wasn't working.

Sensing that my therapist was reaching the end of her ability to help me, I became more anxious and negative than I'd ever been about this condition, which caused an entire new slew of symptoms to occur. I began to feel numbness in my pinkies, numbness and pins and needles around my hip flexor, random twinges and shooting nerve pain all over the right side of my pelvic region. I don't think it was coincidence that this began around the time I realized the physiotherapy wasn't working. The more I think about the condition, the more stressed out I get, the more likely my symptoms flare up.

But the thing that got me back on track in trying to heal (in addition to my partner's endless support, positivity and optimism) was what I'd read a couple years ago in "How the Brain Heals Itself " by Norman Doidge. The book is about neuroplasticity which just means the brain's amazing ability to rewire and heal itself and the body. When this all first started, sex would sometimes work and sometimes not. It was like my brain was battling itself on whether to feel pain or not. Eventually I got so stressed out from even THINKING that pain could occur, that it just finally stuck around for years. Then I thought if my brain can be wired to feel pain, it can be rewired to feel pleasure and no pain.

Surgery has never been an option I've considered so I knew one of my last options was going to see Dr. Andrew in Ottawa and I was terrified because of the pain everyone talks about here. In some last effort attempts to fix my body, I tried many things: acupuncture, estrogen cream, anti-depressants, stretches stretches and more stretches, ART from a chiropractor, intra-vaginal physiotherapy, at-home vaginal stretches with dialators. Nothing helped.

This past January (2015), I finally went to see Dr. Andrew. This has been the single best decision I have made for my own healing. He's been the first person to actually help me. It's a shame the slightly tarnished reputation he has gotten on these forums because I don't think he deserves it. I found him to be a vast wealth of knowledge, having had the condition himself. He is also very kind, compassionate, and friendly. He is incredibly easy to get along with and his lack of arrogance is refreshing. And I can't compliment his bedside manner enough. He is exactly what you need when you're going through the type of treatment he offers. Okay, so he doesn't answer emails very well (I think if you bother him enough though he will respond, lol). There are like a thousand worse things you can have in a doctor/chiropractor.

I fortunately live 4 hours away from his office so I was able to come once a week for treatment instead of the 5 days in a row thing. I've had 7 sessions so far and am 95% better! I can't believe I can say that. The last 5% is occasional numbness in my hip flexor and mild shooting pains internally if I'm close to my period. After almost 5 years I don't have vaginal pain and it's surreal! I didn't really start being better until the last 2 sessions though. But that was just me. It's quite likely I will need touch up appointments in the future, but until then I do my stretches and see how long the positive progress lasts!

I appreciated that Dr. A didn't sugar coat my problems. He told me that people with this condition can become symptom free, but they'll always be susceptible to it, so you need to maintain all the hard work you've put into your body to become symptom free. A year ago I thought I'd do treatment and be done with it. It was very important for me to get into the mind frame that some pain may come back, but it can be dealt with. So maintenance for me means taking a B12 vitamin everyday, meditating, stretching 3-4 times a week, rolling my glutes, and seeing a rolfer once a month (by the way, rolfing massage has completely changed my body - Dr. A recommended it to me and I second that recommendation). I simply see it as life long fitness for the health of my body.

Finally, I can't stress enough how important it has been for me to stay positive and believe that I can get better. This is one similarity I've found in all the stories I've read of people getting better. They honestly believe they will. I've read stories of people who have had it for TWENTY YEARS and they get better! No pelvic treatment is like a pill prescribed by a practitioner. We need to be active participants in our own healing or it isn't very effective. My mom oddly enough has also developed some nerve issues. I'm not exaggerating one bit when I say that she is hands down the most negative person I've ever known. I've watched my entire life how ineffective treatment has been for her various conditions over my 30 years of life. Medical interventions that routinely work for most people don't work on her because she is convinced nothing will ever help her suffering (it has a name actually: the nocebo effect - you know, placebo but opposite). And so unfortunately, she suffers and suffers.

This is the longest post of life, but I really want to share the difficulties and complexities of this condition and to show that there is hope for it. We don't all have the same issues, because our nerves aren't all entrapped in the same areas. We can't all expect the exact same outcome, and there's no reason to feel completely dejected if your healing doesn't follow the exact same path as someone else on this forum. Focus on the small victories because they ARE still victories and we should all be proud of any progress we've made.

My deepest sympathies go out to every single person here. I know many of you have much more severe problems than I do, and I'd probably be headed in the same direction if I didn't get treatment. I wish you all the very best in your healing! I honestly rarely go on here, but if anyone has any questions for me, I'll check it periodically for the time being just in case anyone wants me to elaborate on anything. Feel free to PM me as well!

I wish you all the best!
J.

P.S. One last thing: I recommend reading Doidge's second book as well or at least the introduction and the first chapter. It's called the Brain's Way of Healing and the first chapter is on chronic pain and neural rewiring. I like his work because he uses scientific western language to explain a lot of eastern medicine concepts like meditation. Also Headache in the Pelvis was a book recommended to me by Dr. Andrew. These are all great for putting you into a good, positive mindset for a difficult treatment.

[Rosemary]

Thank you for the book recommendations - i will look them up.
I am twice your age and now am beginning to believe that my body can adjust to this and heal in some way - i am in the UK so won't be seeing Dr Andrew - has he had older patients do well ? i guess he may not be able to say but do you know of anyone personally ?
Hope that you are encouraging your mum to read these books - we are all products/victims of our own circumstances/generation and some of her negative thinking maybe coming from that.

Rosemary X

[Lernica]

LL,

Your positive experience with Dr. Andrew was the same as mine. He was a beacon of hope in a sea of uncertainty and despair and doubt. And I have read both books by Dr. Doidge and found them fascinating about the way the brain rewires itself in cases of chronic pain. The Canadian Broadcasting Corporation (CBC) did a documentary on Dr. Doidge's work which is available online. The documentary was on the tv show "David's Suzuki's The Nature of Things" a couple of years ago. The good news is that the brain can also "unwire" itself and "unlearn" the pain.

The book Explain Pain, by David Butler and Lorimer Moseley (from Australia) also describes very well and clearly the brain's role in chronic pain, and how one can rewire it. The book is available online at the NOIGroup website. You can see a clip of the ideas presented in the book by viewing a lecture by Prof. Moseley on YouTube called "Pain. Is it all just in your mind? Professor Lorimer Moseley - University of South Australia".

Thank you for posting your success story. Have you thought about posting it under the "Success Stories" section of the forum? It might be more accessible to readers there.

Congratulations on regaining your health and your life.

[ladylady]

Rosemary: Obviously Dr. Andrew doesn't give out any info about his patients, but he has mentioned that he has had older patients - one that I believe was even in her 70s or 80s. Apparently he was quite impressed by her too! I think he's just about seen about every demographic.

Lernica - thank you for the video and book recommendations! I find it's always good to have a "pick me up" book or article if pain starts to come back and I just need to get my mind back on the positive track. I don't explore this website too much because I find it does more bad than good for my morale, so I'm glad to have a book to add to my list And thanks for pointing me in the success stories direction. Again, I clearly don't look at too much on here. I didn't even know that section existed. Lol.