My story, my documentary for all to s... - Pelvic Pain Suppo...

Pelvic Pain Support Network

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My story, my documentary for all to share and view: The Hurting Strings - An Artist's Story of Pain

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Read more about how this documentary came about on my website: pudendalnerve.com.au/2014/0...

Or watch it here: reelhouse.org/artly/the-hur...

22 Replies
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Truly poignant and inspirational. I have followed your journey with huge interest. I sent your link to a dear friend that has helped and supported me through PNE. She rang me in tears as your video made it a reality especially from my wonderful husbands point of view. Thank you x

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Hidden in reply to Poppy26

Poppy I hope it helps that there is something people can watch, something real and tangilble, unlike our pain that is invisible. My pleasure. Thank you for your comment, it helps me to know it was worth exposing my life and my family. xx

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I saw ur video,its the truth,for me the problem started slowly slowly after the birth of my first baby so I couldnt even share things with my baby and we couldnt share things me and my husband and my baby as small family

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Hidden in reply to Hidden

That's devastating jasmine. There would be more grief for you, more loss and that's devastating. I don't take for granted how much easier it is for me to only have my partner and i to think of. I hope you have been able to enjoy your family. It's such an important time. x

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Hidden in reply to Hidden

I saw ur video and I saw ur husband saying that he cant do the things with u that he used to do before like grab u in the kitchen and give u a kiss may be u r sore,I had a tears in my eyes and I cried, its true,I saw how much my life has changed,a lot, my husband too he cant do what ur husband cant do,I miss my old time with my husband ,I feel that I am giving him nothing beautiful, I feel I am giving him only pain.

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Hidden in reply to Hidden

It's a very difficult situation. So much pain, so much grief and loss. We were once very different people. But I still have hope. I still believe with alot of help and rest, we can get better. I understand your pain... it's a very sad situation.

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Hidden in reply to Hidden

I hope so,my small family needs me,I pray that I can get better with time.also all the others can get better xxx

I have sent your inspirational journey to everyone e dearest to me to help them understand. I've even sent to lovely PT as she is so supportive . Heart felt thanks for your courage and bravery. I watched it again with my husband and his eyes were moist when their was talking about the effect on him. I wish you every success with your recovery x

I'm going to raise further awareness and send link to both surgeons , the man that carried out my hysterectomy the cause of all this pain. And to the surgeon that performed bilateral pudendal decompression surgery in jan this year. I really do not feel they quite understand the devasting effect PNE has on your life and those around you. I have lost my purpose, prior to this I was a vibrant teacher in charge of 7 departments in a secondary school and loved my job. Have not been able to work on over a year bit with the help of family and friends remain positive. Your video had hugely helped people to understand this condition and I am so indebted. I'm an English teacher but have never found the right words to explain my pain. I wish you lots of love and again thank you. It will really help medical specialists to have a new found empathy and understanding. A new dawn, a new beginning!!! X

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Hidden in reply to Poppy26

Poppy thank you so much, you give me great courage and make it all worth it. I hope the surgery relief kicks in for you. I hear you when you say you were a different person. We completely change. Strange but the last two months I've had so much grief. I will be writing a post about it when I get the chance but you really lose that able human you once were. And not many practitioners understand it, it's true. Most surprising are the gyneocologists. It's astounding how many don't know a thing about PN. I'm so glad I've helped in some way. Remain hopeful, wipe away the tears. Take care, go slow, this thing I'm convinced, needs lots of repair. I'm also hopeful someone will put up the funds for Peter so he can make an extended version. He has much footage... let's see. Thanks again for the encouragement I really appreciate the feedback

xxx

There are so many of us suffering with this debilitating pain, but here in England my doctors just do not know how to help me. I spent 2 years lying down and it that time did endless hours of research, diagnosed my condition and had it confirmed by the doctors at the University Hospital in Nantes where I had decompression surgery. Only partly successful and now I have developed pain in more areas all due to PN. I spend life at home, stood up all day and my pain is kept at a low level due to medication. This bears no resemblance to the active life I lead before

and thinking about that only makes me cry. Your film is an amazing way to get the message across of the devastation this nerve damage causes to so many people, yet most doctors have never heard about the problem. It should be compulsory viewing by the medical profession and I hope my doctors will watch it. I have done many crafts throughout my life and crafting is now my salvation.

Thank you so much, I hope your new life can somehow fill your days with contentment. XX

Poppy26
Poppy26 in reply to Edenborough

Hi like yourself I've had the same surgery and pain levels have not changed. Are you having PT or any treatment to help as uk based aswell. Send going positive thoughts x

Edenborough
Edenborough in reply to Poppy26

Hi Poppy, as of yet I have not found a suitable physio within travelling distance. I have been seeing a pain consultant for 18 months but so far they have offered nothing, well I say seeing most of the time they just cancel my appointment and make one for 3 months later!! I think I have pretty good medication but sometimes, like now, I am having a few really bad days and I have no idea why as I have not been doing anything that I know affects me. I think that is one of the most frustrating things. Most of the time I keep very positive but on thinking about it I am not sure why!! I try and make the most of each day within my limitations, as we are still much better off than some people. Good luck, Marion

Poppy26
Poppy26 in reply to Edenborough

Hi not sure where you are based but I see an excellent PT in cardiff and slap Ruth jones is meant to be fab in southampton ? Really hope you get some constructive help as this condition is so difficult to live with x

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Hidden in reply to Poppy26

Ruth is a direct contact, she is well aware of this condition as she follows my social media and website very closely. I'd highly recommend her too. Edenborough have you read Amy Stein's Heal Pelvic Pain? I'm finding her belly massages and just the general suggestions in her book fabulous. I'm no where near able to do her exercises but I am doing Dustienne's yourpaceyoga.com

I don't do all the poses, I can't sit or lie on my back and I don't do the lunges but I have found that once a week I can manage this yoga. I couldn't do anything for 7 years. Here are the links: yourpaceyoga.com/

healpelvicpain.com/

xxx

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I'm sad to hear of your pain and more so that you are so misunderstood. But it's what we all hear all the time. Thank you for your kind words and feedback of the documentary. I often halted in the process, wondering what I was doing to my family, my husband, putting it all out there, but comments like yours make it all worth it. I hope all practitioners see it too and I hope an organisation steps forward to fund the full documentary. I hope your craft remains your salvation, it certainly is mine! thank you for your kind wishes also xxx

Hi watched your video with my mum today and she cried and we had a massive heart to heart as it hit home what this condition does. I'm truly grateful, your courage has had such a positive impact on my life. My mum thought their was wonderful and gorgeous looking!!! Mums hey!!! Hope you are having a good day soula. Much love x

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Hidden in reply to Poppy26

Sweet Poppy, I detect a sense of humour is still about. What would we do without it? Your mum sounds wonderful, I'm so glad the documentary is helping. Thank you so much for the message. Much love xx

Poppy26
Poppy26 in reply to Hidden

Predictive text keeps changing theo to their!! My mum is amazingly rock and best friend. I am always positive and laugh and smile constantly have so much to live for despite the pain. My husband is the technical manager for freeview the tv network and your courage has inspired me to emulate your bravery and raise awareness . My PT got in touch today and your video has hugely helped her to understand more about condition and treatment, a wonderful thing. Thank you so much for sharing. Much love x

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Hidden in reply to Poppy26

I love predictive text, it's always a hoot. So glad to hear about the happiness in your life. Truly PN needs support. And thank you so much for your backup and support. This is exactly what we wanted from the documentary. We wanted it to create awareness and be a spring board for everyone. Feel free to recommend the book too. It's great for waiting rooms as patients. Have a great day xx

Dearest Soula,

Your beautiful book sits by my bedside, and from time to time I feel those strings, and wonder if they will ever be cut?

And now this film... A mirror across many oceans!

My accident was a vaginal hysterectomy performed by a butcher. He maimed and abused me. He let my legs fall too far apart, and my pudendal nerve was trapped!

Nobody listened.

In 2008 I finally met Andrew Baranowski who was the first person to mention the Pudendal nerve!

He has been unable to help.

20 years ago this year, when my children were 4 & 6.

Everyone keeps asking when I will be better?

Or worse, they have abandoned me.

Your film has helped me so much.

My husband will really understand your lovely Theo.

Thank you so much for all you do to publicise this ghastly, invisible condition.

I hope one day that we will ALL have better tomorrows.

Much love to you,

Sue Carey xx xx

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Hidden in reply to SuzyQ

Darling Sue, I'm right by your side by the sounds of it. Sadly, strings and all! Yes we'll chop them but I think it might take one at a time. Have you considered the stimulation device? It really has saved me. I had a miserable day yesterday but they are fewer and further between.

I hope everyone finds comfort, empathy and understanding in the documentary and above all I hope Peter gets the funds to make a longer version as he would like. As you know, we didn't even touch the sides of the torment of this condition.

Right back at you in that I hope we all have better tomorrows.

Much love to you. I'll have the vision of you touching those strings all day today.

xxxxxx Soula

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