Hello All,
Just wondering, is there an area dedicated to success stories surgical or otherwise?
Ms. Rivers
Success Stores?? Where are they
Success Stores?? Where are they
PN pain post laproscopic vaginal hysterectomy. MRN diagnosed me with piriformis, sciatica, and pudendal syndromes.
Re: Success Stores?? Where are they
Hi Ms. Rivers,
I'll put your idea of a section for 'Success Stories' to the administrators of the forum. Have you looked at 'Personal Stories' on the homepage?
I'll put your idea of a section for 'Success Stories' to the administrators of the forum. Have you looked at 'Personal Stories' on the homepage?
Re: Success Stores?? Where are they
Thank you for replying. I'll try the personal stories. I tend to think newbies like myself look for the word "success" in these forums. I participate in another forum and they have a folder just for these kind of entries. I zero'd in on it right away. I realize there are no real quick fixes and everyone here is a work in progress, self included.
PN pain post laproscopic vaginal hysterectomy. MRN diagnosed me with piriformis, sciatica, and pudendal syndromes.
Re: Success Stores?? Where are they
I have no chronic pain 4 months after surgery.
I took a year off of work to work on my recovery.
I have daily PT at home, PT with a doc 3 days a week, water PT, TENS unit 3 times a day and I take a low amount of pain meds and Valium to deal with the pain that comes along with PT.
I wish I had the surgery years ago. I can't tell you how excited I am to have a normally working body.
I have burning in one spot on my left pubic bone where the incision was for decompression of my left obturator nerve and basic muscle and tendon pain from my pelvic floor and the rest of my body trying to protect the nerve pain for 32 years. All of my parts work correctly.
I had vaginal surgery and had to have some skin there removed so I'm working with dilators as well. I have no pain with them either.
I can't tell you how happy I am.
Healing from this is the hardest thing I have ever done, so please don't think I took surgery lightly.
PT is required (in my opinion) to heal correctly from a condition this involved.
Without daily work and treatments I know I would not be happy with my results so please consider this is my story and may not apply to you.
I will answer any questions or listen to any venting you need to do.
Loves
I took a year off of work to work on my recovery.
I have daily PT at home, PT with a doc 3 days a week, water PT, TENS unit 3 times a day and I take a low amount of pain meds and Valium to deal with the pain that comes along with PT.
I wish I had the surgery years ago. I can't tell you how excited I am to have a normally working body.
I have burning in one spot on my left pubic bone where the incision was for decompression of my left obturator nerve and basic muscle and tendon pain from my pelvic floor and the rest of my body trying to protect the nerve pain for 32 years. All of my parts work correctly.
I had vaginal surgery and had to have some skin there removed so I'm working with dilators as well. I have no pain with them either.
I can't tell you how happy I am.
Healing from this is the hardest thing I have ever done, so please don't think I took surgery lightly.
PT is required (in my opinion) to heal correctly from a condition this involved.
Without daily work and treatments I know I would not be happy with my results so please consider this is my story and may not apply to you.
I will answer any questions or listen to any venting you need to do.
Loves
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
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catherine a
- Posts: 291
- Joined: Sat Sep 18, 2010 4:46 am
- Location: Perth Western Australia
Re: Success Stores?? Where are they
Kat,
Did you have nerve release at the Obturator nerve only or did you also have the Pudendal nerve released? It is great to hear of your success. Daily PT would be wonderful if it was available to us all.
Internal physiotherapy was way too painful for me to endure for at least 12 months after PN surgery. Some people can tolerate it very well and some others don't. After 32 years of intense pain you must feel on top of the world.
I think we could make this thread into the 'Success Stories' .
It's been 6 years since the intense onset of PN pain took hold of my life. 3 years after PNE surgery in France I can now say I'm in a much better place than I was back then thanks to the information and support I received from this forum.
I was fortunate to have a few doctors who believed in me and who took an interest in the information found on the PN websites.
I did have ongoing hydrotherapy to help me get moving. Internal physio. was too difficult due to the horrendous pain flares afterwards combined with the distance I had to travel (1 hour each way.) Now my life seems to be getting back to normal.
Although I had PNE surgery 3 years ago, it has taken this time for the pain to subside to a tolerable level. Some weeks I can say that I'm 90% better and other weeks I would say I'm about 80% better. My advice to anyone is: Don't give up. inform your doctors of this website. if they don't listen find one who will. Keep moving. don't overdo things, Rest when you can, Fight against depression. Find a good pelvic floor physiotherapist. Ignore negative comments from others. Keep working if you're able. Even if it's part time. Approach your HR dept. and ask to speak with a Health & Safety Rep. I'm fortunate to work for a large company who value me as an employee. They allowed me to have as much time off work as I needed. I ended up being away for more than 3 years. I was then allowed to come back to work at my own pace. 1 hour then 2 hours etc. If you can't work, apply for Disability payments. If you're refused, try again. Get as many medical letters as you can from your doctors to support your claim. Don't waste time going to Doctors who know nothing about PN. Go straight to the docs. who do know. It will save you a lot of time, effort and money.
I definitely see my story as a 'Success' because my life is back, my pain is low, and I'll never give up hope that one day I'll be 100% cured. I hope and pray for everyone suffering that you'll be healed one day too.
Catherine
Did you have nerve release at the Obturator nerve only or did you also have the Pudendal nerve released? It is great to hear of your success. Daily PT would be wonderful if it was available to us all.
Internal physiotherapy was way too painful for me to endure for at least 12 months after PN surgery. Some people can tolerate it very well and some others don't. After 32 years of intense pain you must feel on top of the world.
I think we could make this thread into the 'Success Stories' .
It's been 6 years since the intense onset of PN pain took hold of my life. 3 years after PNE surgery in France I can now say I'm in a much better place than I was back then thanks to the information and support I received from this forum.
I was fortunate to have a few doctors who believed in me and who took an interest in the information found on the PN websites.
I did have ongoing hydrotherapy to help me get moving. Internal physio. was too difficult due to the horrendous pain flares afterwards combined with the distance I had to travel (1 hour each way.) Now my life seems to be getting back to normal.
Although I had PNE surgery 3 years ago, it has taken this time for the pain to subside to a tolerable level. Some weeks I can say that I'm 90% better and other weeks I would say I'm about 80% better. My advice to anyone is: Don't give up. inform your doctors of this website. if they don't listen find one who will. Keep moving. don't overdo things, Rest when you can, Fight against depression. Find a good pelvic floor physiotherapist. Ignore negative comments from others. Keep working if you're able. Even if it's part time. Approach your HR dept. and ask to speak with a Health & Safety Rep. I'm fortunate to work for a large company who value me as an employee. They allowed me to have as much time off work as I needed. I ended up being away for more than 3 years. I was then allowed to come back to work at my own pace. 1 hour then 2 hours etc. If you can't work, apply for Disability payments. If you're refused, try again. Get as many medical letters as you can from your doctors to support your claim. Don't waste time going to Doctors who know nothing about PN. Go straight to the docs. who do know. It will save you a lot of time, effort and money.
I definitely see my story as a 'Success' because my life is back, my pain is low, and I'll never give up hope that one day I'll be 100% cured. I hope and pray for everyone suffering that you'll be healed one day too.
Catherine
Last edited by catherine a on Sat Nov 20, 2010 2:29 am, edited 1 time in total.
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
Re: Success Stores?? Where are they
Guys, forgive my ignorance, but is PT Physiotherapy, if not, what is it. Sorry to ask what probably seems a silly question.
John
John
Re: Success Stores?? Where are they
Hi John,
PT = Physical Therapy.
Warm regards,
Karyn
PT = Physical Therapy.
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: Success Stores?? Where are they
Thanks Karyn. 
John
John
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catherine a
- Posts: 291
- Joined: Sat Sep 18, 2010 4:46 am
- Location: Perth Western Australia
Re: Success Stores?? Where are they
Hi John,
I think in the US it's called Physical Therapy and in the UK and Australia it's called Physiotherapy. Not sure about other countries but it's the same thing. took me a while to work out all the abbreviations too.
It's not your ignorance. I believe the only question which is a silly question is the one that was never asked.
Catherine
I think in the US it's called Physical Therapy and in the UK and Australia it's called Physiotherapy. Not sure about other countries but it's the same thing. took me a while to work out all the abbreviations too.
It's not your ignorance. I believe the only question which is a silly question is the one that was never asked.
Catherine
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
Re: Success Stores?? Where are they
Well I just learnt something there, all this time I have been thinking it was most odd that there was nobody in the UK doing this Physical Therapy, whatever it was! Thankyou catherine for clarifying.