About PN forums, please remind everyone......

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
oldcarguy
Posts: 31
Joined: Tue May 01, 2012 12:32 am

Re: About PN forums, please remind everyone......

Post by oldcarguy »

I too have been looking for some stats showing some proof of success before considering the surgery, mainly because the surgery is a no going back decision. What I got from the doctor (in Houston) was a flat 1/3 get "cured", 1/3 get better, and 1/3 no improvement. Ok, well gee that's not really a whole lot to convince a person to take the plunge. Like has been said by Greg, the websites only seem to give the negative side of the outcomes but where are we supposed to get info to make us feel confident about the surgeries if the doctors don't really give you anything?
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Violet M
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Re: About PN forums, please remind everyone......

Post by Violet M »

I think people who are in serious pain don't have as much trouble making a decision about surgery as those who have more moderate symptoms. For me it wasn't so much whether to have surgery as it was who to go to....

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Dizzyblonde
Posts: 32
Joined: Wed Nov 14, 2012 10:51 pm

Re: About PN forums, please remind everyone......

Post by Dizzyblonde »

Hmm Violet, I'm seeing your point more and more. I'm looking for facts and figures everywhere and hoping that I'm going to recover over time and am prepared to put the time in if necessary. At my level of disability sadly I haven't seen any evidence of that. But one thing is for sure, the very scanty statistics on success as mentioned by oldcarguy
oldcarguy wrote:What I got from the doctor (in Houston) was a flat 1/3 get "cured", 1/3 get better, and 1/3 no improvement. Ok, well gee that's not really a whole lot to convince a person to take the plunge. Like has been said by Greg, the websites only seem to give the negative side of the outcomes but where are we supposed to get info to make us feel confident about the surgeries if the doctors don't really give you anything?
I have recently heard the same stats elsewhere and also think that I might just take the plunge. I'd give anything for my life back, even slight improvement might be better than the grim alternative. Sorry to sound so negative, I'm a bit fed up with all of it! Support amongst one another on this forum is also very important and I couldn't get by at the moment without it.
Judy
Bladder prolapse surgery 1992; hysterectomy & 2nd prolapse surgery next 6 years. PN started 1992 but managed well. Flare in March 2012 ignored signs from prolonged sitting & exacerbated by UTI. PT so far unsuccessful. Two bilateral blocks only right side positive for short time MRI showed PNE left side. Results conflicting so proposed nerve stimulater implant with bilateral PN release to cover all scenarios. Might go ahead approx Feb 2013 Housebound..300mg Lyrica x 2 daily &5mg Endep
Sallyg100
Posts: 3
Joined: Wed Jan 02, 2013 10:26 pm

Re: About PN forums, please remind everyone......

Post by Sallyg100 »

Thank you for posting this. I was feeling really hopeless until I read your post.
Jax87
Posts: 134
Joined: Sun Apr 08, 2012 9:33 pm

Re: About PN forums, please remind everyone......

Post by Jax87 »

Thanks Greg for reminding everyone of this. When I first came to the website I was very despondent because it didn't look like that many people were getting dramatically better. However, over time I did see some people's improvement, including my own. Now, I pretty much just check the site from time to time to see what's going on.

I'm still waiting to get my hip surgery and going to orthopedic pt in the meantime. I no longer have trouble in my sit bones with sitting, only in my groin area due to the hip impingment. I'm able to have sex regularly for the first time in my life, even if it still is not 100% pain-free. I hope that after the hip surgery recovery I will be able to reduce my cymbalta and lyrica dosages and maybe be able to be more active. Like HM, my recovery has not been due to PN surgery, but I would never have figured out how to deal with it without the internet. I'm not a full on "success story" quite yet, but I think I'm getting pretty close.

So, I agree that there must be other people out there who have improved and do not post much anymore or never posted to begin with. Thank you all for your continued help and support.
Started with vulva itching 2/11. Diagnosed as vulvodynia and then PN in 01/12. Progressed to sitting pain and constant burning. Received 4 nerve blocks with only temporary relief, did year of pelvic PT before being diagnosed with bilateral FAI and hip labral tears 7/12. Did orthopedic PT 1.5 years. 3/13 Arthroscopic hip surgery at HSS with Dr. Kelly. Take cymbalta and lyrica daily. About 97% better than worst point thanks to combo of surgery and meds. Yay!
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Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: About PN forums, please remind everyone......

Post by Quilter 2 »

Hi Greg and everyone;
Guilty with a capital G for not returning earlier to speak of my small / big successes.
Nov 1 2011, I had surgery on my right side. Wow just writing that makes me wonder where the time went. I'm 14 months out and I have had some great days and some not very good. The really bad times came from the fact we moved in June from VT to TN. The 1000 mile one way ride was not a great idea for someone only 6 months out of surgery. From May to July of 2012 we made 3 trips back and forth. 6000 miles. Once we finally settled into our new home, stayed out of the car, got unpacked and did all the other stuff that comes with moving, lights turned on, drivers lisences, registrations, setting up banks ect., I felt better. I try to walk as much as possible and that sometimes makes my leg ache and causes more burning. I have taken myself off of most of the meds. I take 300 mgs. of Tramadol a day. On a really good day only 200 mgs. About 3-4 times a month, I need the Valium suppository, and 250 mgs. of Gabapentin in the AM. I think that's pretty good but I haven't had a pro tell me that.
I need to think before I do some things. I picked up a shovel to move a little snow the other day, yes, it does snow in TN(not much) and my husband almost killed me. I heard for at least an hour how chopping ice put me where I am today. See, I was having a great day and just didn't think. He's right, but I hated to admit to it!!
For all of you not knowing whether or not to have the surgery: I had Dr. Conway, whom I like very much. I tried shots, PT, traveling to Phoenix for second opinions, different meds, traveling to NYC for Dr. Potters MRI. I wasn't getting any better so I figured what the hell?? As of a year ago, I didn't feel I had any other options or things to try. There was a time when I wished I didn't have the surgery. After the pity party, and realizing that life was going to be different, I was glad I had it. I'm better now than before. From what I've read, the turning point is 18 months. Dr. C told me I should know at the 2 yr. mark what the rest of my life will be like, (my words, not his)
One day I drove 220 miles with NO flare. Another day, I just puttered around the house and hurt like hell. Who knows? I am aiming to get back on the motor cycle. I may find out after the ride that I will never be able to do it again but I will try this summer around my 18 month mark.
I do apologise for not getting back to this wonderful site that saved my sanity. I guess, I just didn't want to ever see a computer or phone again. I don't even do much E-Mail wise. Just burned myself out with the researching.
My best to you all. No matter what you decide to do, there are always good days in one form or another. Some are just not painless. I don't believe I will ever be pain free, but I will always make the best of it with my family and friends.
Love to you all
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
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Violet M
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Re: About PN forums, please remind everyone......

Post by Violet M »

Hi Doreen -- it's so great to hear from you again, and especially great to hear that you are having some good days! You know, I wasn't really able to count on a good day until 18 months post-op and even after that things have continued to improve. So you have good reason to be optimistic.

Wow, you've gone through some major changes since we last heard from you. Glad you were able to get through the move and get set up in your new home. Now, please obey your husband ( :lol: :lol: :lol: :roll: ) and don't do anything crazy. Would love to hear how you are doing at the 18 month mark. ;)

Hugs,

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: About PN forums, please remind everyone......

Post by helenlegs 11 »

Thanks for posting Doreen, good luck for the future. . . . Your husband sounds very like mine. . . .if he even saw me with a shovel!!! ;)
Take care
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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