MY SECRET PAIN! LOOKING FOR PT

i want to do everthing to make my pain less. So if i have to go to America i wll. 

My brief story:

 From September 1998 vulvar pain, constant severe burning, stinging pain in the vagina and surrounding vaginal area. The pains are spreading to the labia and clitoris as well.

 I describe this constant pain as a nerve pain and a severely constant bruised feeling. 

These pains are sometimes accompanied by huge itching and serious sexual hyperesthesia in the vaginal area, so that I could no longer walk or sit and I can’t tolerate underpants.

In 2001 an operation; removal of hymen and adjacent vestibulum epithelium. No improvement of pains.  Diagnosis; serious debilitating vestibulodynie.Vulvodynia.

Complaints; constant burning and bruised pain, neuralgia in the vaginal and rectal area, strong clitoral pains.

2004; Violent constant cramping in the pelvic floor area. (the whole saddle area). Sometimes irradiate to legs and feet and lower back. When standing and moving, the pain is unbearable. 

I can walk a few meters and lie on the couch. I can only be transported lying down. 

Many treatments have brought no improvement to this day.

After many treatments with several medications and many years physical therapy, pelvic floor therapy and rehabilitation no improvement. 

I'm desperate looking for a PT in Europe. I iive in the Netherlands near Amsterdam.

Please can somebody help me to find one?

18 Replies

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  • Maria elliot london x

  • Do you have ecperience with Maria?

  • Dr Ruth Lovegrove UK

  • Thank you so much. I'm going to search her on internet.

  • Thank you! :-)

  • Hi Sylvieart

    I am so sorry to hear your story. I am in a similar situation, although not as bad as yours, and I know how it can drive you to the brink! In the first instance, I wonder, have you tried looking at pudendalhope.info/node/54 ?

  • Thank you. And I am sorry to read that you also suffer from this terrible disease. In will looking the page you recommend me.

  • Are you able to contact Harriet Wittink ? she is an IASP Board member and is sure to know of physios in the Netherlands. If that isn't successful, you could contact Dr Moyal Barraco in Paris. She will also know physios in France. If you have any difficulty contacting her, let me know as I am in contact with her. She is a member of our medical panel and very well known in the field internationally.

  • Judi, i am so grateful for your information. Thank you so much. It feels already better in my mind. :-)

  • Dear Judy, i searched on the internet dr. Moyal barracco, but i can not find a emailadres. It is indeed difficult to get in touch with her.

    Will you contact her? I would thank you in advance for your help.

  • Thank you so much for your response, i'm so thankfull. ♡♡♡. :-)))))x

  • A variety of approaches to healing pelvic pain is what can heal it. Just physical therapy alone will not do the trick, but it's part of the solution. I know women who have suffered severe vulvodynia and are much better now. I have vaginal soreness symptoms on and off. There is a definite emotional connection to it. When I'm experiencing more emotional stress is when it fares up. As I calm down it resolves. It just the result a very sensitive nervous system.

    Learning how to feel emotions and how to focus differently in the body is part of the healing. Mind calming is also a huge part of learning to feel better. At the core of the issue is the nervous system is stuck in the fight or flight response which is a huge drain on the energy the body needs to be healthy. Learning to calm your nervous system will help your body come back into health. This is tricky, but it really works.

    I learned to heal my pelvic pain by receiving mind-body coaching from Abigail Steidley, who had severe vulvodynia herself. I then trained with Abigail and I'm endorsed by her as a mind-body coach. Coaching is very effective over the phone and on Skype. Abigail has a digital product called the Mind-Body Toolbox which is a recorded telecourse she did and this is a good place to start with mind-body healing. I also have an eCourse called Mind-Body Clarity that teaches the core practices I use for myself and with my clients.

    You can find out more of what I offer at gailkennylifecoach.com/

    I offer a free pain relief meditation, a downloadable mp3 of a guided meditation on my website. It's an excellent place to start with mind-body healing

    You can find what Abigail offers at abigailsteidley.com/

    Abigail offers a free eBook on her website too.

    I encourage you to sign up for our newsletters as we both blog regularly on mind-body healing practices.

    I wish you the best in your healing. You are brave to reach out for help and I hope you find comfort in the support you receive.

  • I will thank for your response. I do mindfulness for many years. It really helps me to have less sress, but my pain stays on an excruciating level. :-(

  • i see you at facebook :-)

  • I'm not sure if this book is available in the Netherlands (I'm in the US), but I found it very helpful: "Healing Painful Sex: Confronting, Diagnosing, and Treating Sexual Pain," but Deborah Coady MD and Nancy Fish MPH, MSW. It may give you more ideas in terms of what exactly is going wrong, and therefore what holes there are in your treatment plan. Good luck!

  • Thank you so much :-)

  • i am going to see Maria Elliot!!!!

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