Can't believe we talk about these things online but when you are in pain who cares who reads this, eh? Violet
Dr Conway
Re: Dr Conway
Patty, if you aren't allergic to latex you can fill balloons with water, tie them off, freeze them, and then insert vaginally. The 7 inch round balloons are pretty small when frozen so they don't stretch the muscles too much. Other people have used a mixture of rubbing alcohol with water or ultrasound gel so the balloons are a little softer and the cold not as intense. Or you can use condoms. It can be pretty intense so you may have slide them in and out until you adjust to the cold but if you push them up against the ischial spine it can really help numb the nerve and cut down on the pain. Of course it is a temporary solution but many women have found it very helpful. There....I have probably not left much to your imagination. Can't believe we talk about these things online but when you are in pain who cares who reads this, eh?
Violet
Can't believe we talk about these things online but when you are in pain who cares who reads this, eh? 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.
Re: Dr Conway
Hello Patty,
I am sorry you are dealing with this. I am 23 been suffering for 3 years now, and it has consumed my life. I am waiting myself to get an EMG with Conway, trying to see if i can have it done at MGH so i don't have to drive. I also work at MGH so it's convenient. He did NOT do anything on my first visit. Just a rectal exam and most spots were fine, until he pressed on my sacrospinous and i felt pain. That;s when he immediately stopped and signed me up for an EMG.
Was a little dissapointed as i drove in traffic 2 hours each way.
I am desperate enough now, thanks to numbness in my penis, i am going to shell out the 2k for an MRN. Hoping to get a medical necessity note that will cover it, but not sure.
Stay positive, i know it seems near impossible. I have contemplated suicide many times in the last 3 years, i am sorry that sounds so morbid, but when you are 23 and your penis stops working, and every doctor just thinks you are crazy and they can't help you, it's enough emotional stress and trauma to make you think a little crazy.
I hope you feel better, and i hope your EMG shows something so you can find and target that stupid nerve.
I know i am not a female, but i am sure i can relate somewhat with your situation, feel free to email me.
I am sorry you are dealing with this. I am 23 been suffering for 3 years now, and it has consumed my life. I am waiting myself to get an EMG with Conway, trying to see if i can have it done at MGH so i don't have to drive. I also work at MGH so it's convenient. He did NOT do anything on my first visit. Just a rectal exam and most spots were fine, until he pressed on my sacrospinous and i felt pain. That;s when he immediately stopped and signed me up for an EMG.
Was a little dissapointed as i drove in traffic 2 hours each way.
I am desperate enough now, thanks to numbness in my penis, i am going to shell out the 2k for an MRN. Hoping to get a medical necessity note that will cover it, but not sure.
Stay positive, i know it seems near impossible. I have contemplated suicide many times in the last 3 years, i am sorry that sounds so morbid, but when you are 23 and your penis stops working, and every doctor just thinks you are crazy and they can't help you, it's enough emotional stress and trauma to make you think a little crazy.
I hope you feel better, and i hope your EMG shows something so you can find and target that stupid nerve.
I know i am not a female, but i am sure i can relate somewhat with your situation, feel free to email me.
Re: Dr Conway
Dr. Conway office referred me to the Elliott pain center in Mancheter NH.
They prescribe a compounded topical ointment with both local anesthetics and amatrypyaline/topomax/ketamine combinations that works well for me until I became allergic to it.
If I remember right it was only about $100 for a two month 50 Gram supply.
I now use Lidoderm 5% patches that I cut into shape, they are slightly sticky and can stay on for 12 hours. Any pharmacy should be able to get them. As for price I don't know.
They prescribe a compounded topical ointment with both local anesthetics and amatrypyaline/topomax/ketamine combinations that works well for me until I became allergic to it.
If I remember right it was only about $100 for a two month 50 Gram supply.
I now use Lidoderm 5% patches that I cut into shape, they are slightly sticky and can stay on for 12 hours. Any pharmacy should be able to get them. As for price I don't know.
PN by sedentary job and commute
Treated for IlioInguinal pain 2008-10
PT by Dr. Conway's team | 3 PN blocks @ Elliott in Manchester USA
TIR 2010 and TG by Dr. Conway in May of 2012 uncovered nerve damage, declared surgical failure in May of 2014
PT and bed rest continues
Employer refused accommodations in 8/13, now in the disability war.
Sacrial Stimulator 9/14 by Dr. Ross Boston MA
Anesthetic pain pump trial 3/16/15 by Dr. Ross
Treated for IlioInguinal pain 2008-10
PT by Dr. Conway's team | 3 PN blocks @ Elliott in Manchester USA
TIR 2010 and TG by Dr. Conway in May of 2012 uncovered nerve damage, declared surgical failure in May of 2014
PT and bed rest continues
Employer refused accommodations in 8/13, now in the disability war.
Sacrial Stimulator 9/14 by Dr. Ross Boston MA
Anesthetic pain pump trial 3/16/15 by Dr. Ross
Re: Dr Conway
Hi Patty,I am a Canadian lady who went to see Dr.Conway after being unable to find a doctor here at home who could help me.Last spring I started getting all the terribly painful symptoms like pain in the perineum ,wasp stinging-like pain in the vaginal area,the foreign object sensation,burning,tingling etc..We found an article online by Dr.Hibner in Arizona which described me to a tee.We managed to find Dr.Conway in New Hampshire which was much closer to my home.My hubby made me a bed in the back of our SUV and we made the journey to New Hampshire. We both found Dr.Conway to be empathetic,knowledgeable and a good listener.I had the EMG,a complete internal exam and a full history was taken.Dr.Conway suggested we try and find a PT who was PN aware as physical therapy was the cornerstone treatment in the beginning. Luckily I found a wonderful PT from a kind lady on this forum who saw that I lived in Canada and knew of someone in the city near to where I live.I have a wonderful family doctor who has helped greatly with pain management. I was on Lyrica but sadly the side effects were just too numerous for me so I am weaning off which is always a difficult process.My PT takes a more natural approach and my pelvic floor work with her has been very helpful.She has helped me not to be so frightened of the whole situation which is hard to do when one's life becomes unrecognizable and dealing with such pain becomes a daily challenge.I have found Norytryptiline to help with sleep and mood as well.Exercise,meditation and large doses of hope are essential!!I think you will be in good hands with Dr.Conway.I found him to be very thorough and his assistant Julie was so very kind and helpful.I certainly empathize with all who suffer with this very painful condition.I think it is of great value to have a good relationship with your family doctor who can help steer the ship by helping with pain management,making referrals and being open to a team approach with other PN professionals.I can really understand the need to find relief for the sheer discomfort and vaginal pain that accompanies PN.This is such a tender spot for many....I have definitely have had many a night with my trusty ice pack!.Best wishes as you navigate the waters and attend your appt with Dr.Conway.I found writing down my questions in note form helpful.Having a support person with you is also reassuring and beneficial to have a second set of ears to catch all the important info that will be discussed.May your time with Dr.Conway be fruitful for you.Blessings,Lise.
Re: Dr Conway
I went ahead and cancelled my appointment with Dr Conway. I have given up all hope that my life will ever improve from this terrible pain and if he only is going to offer surgery I just don't see the point. Surgery just does not seem to be an ideal solution for this problem. Plus I have not been officially diagnosed with PN only a tight pelvic floor. I take 5 medications before bed and still wake up in pain. No human should have to endure this much pain for this length of time.
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stephanies
- Posts: 686
- Joined: Mon Oct 25, 2010 3:07 am
Re: Dr Conway
Patty,
There are many things that Dr. Conway could suggest that might improve your situation. If you have the ability to go and see him you might get real benefit even if you won't consider surgery. I am struggling myself these days, but I am holding onto hope and I encourage you to try and do that too even if it is all we have.
Stephanies
There are many things that Dr. Conway could suggest that might improve your situation. If you have the ability to go and see him you might get real benefit even if you won't consider surgery. I am struggling myself these days, but I am holding onto hope and I encourage you to try and do that too even if it is all we have.
Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
Re: Dr Conway
I have no hope any longer for a pain free life or for my future.
Re: Dr Conway
Hi Patty,
I'm very sorry you cancelled your appointment with Dr. Conway and you're feeling so hopeless. We've all been there at times.
Well, it's definitely not unreasonable to strive towards a life with less pain and more function. I'm very sad that you're not giving yourself the chance you deserve for a better quality of life, which is certainly obtainable.
Please feel free to give me a call, if you'd like to work through this. You deserve every chance for a better quality of life!
Warm regards,
Karyn
I'm very sorry you cancelled your appointment with Dr. Conway and you're feeling so hopeless. We've all been there at times.
Patty wrote:I have no hope any longer for a pain free life or for my future.
Well, it's definitely not unreasonable to strive towards a life with less pain and more function. I'm very sad that you're not giving yourself the chance you deserve for a better quality of life, which is certainly obtainable.
All the more reason to pursue an accurate diagnosis. You're first step should be consulting with a specialist and getting a good exam. The consultation, EMG and exam will dictate the need for diagnostic blocks or not. Apparently, the many months of PT you've gone through haven't been helpful with relaxing your tight pelvic floor, reducing your symptoms or even identifying musculoskeletal issues that may be contributing to a tight pelvic floor.Patty wrote: Plus I have not been officially diagnosed with PN only a tight pelvic floor.
I agree. So, why are you giving up hope before going through the proper channels?Patty wrote: No human should have to endure this much pain for this length of time.
Please feel free to give me a call, if you'd like to work through this. You deserve every chance for a better quality of life!
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: Dr Conway
Patty,
DOn't give up, i know it's hard. I have been ready to lose my mind myself at this point. All i can say is DO NOT LOSE YOUR APPOINTMENT. Dr. Conway is near impossible to get a hold of. And unfortunately we don't have many options for doctors who have a clue of what we are suffering with.
He may be able to help you.
I am not the type to lie, but so far he hasn't really impressed me. Been waiting 3 weeks for a response from him of whether or not he will give me the referral for the Potter MRI. And over a week for the interpretation of my EMG. But i am hoping when i talk to him, he will have something positive to say, or show some light at the end of the tunnel. I will update you as soon as the bastard calls me back.
But the EMG gave me piece of mind knowing i am not crazy, my nerve was delayed significantly meaning i am having entrapment somewhere down there.
I am terrified for what the future holds, but i promised myself i would at least take all the necessary avenues before i just give up, and you owe it to yourself to at least do that.
DOn't give up, i know it's hard. I have been ready to lose my mind myself at this point. All i can say is DO NOT LOSE YOUR APPOINTMENT. Dr. Conway is near impossible to get a hold of. And unfortunately we don't have many options for doctors who have a clue of what we are suffering with.
He may be able to help you.
I am not the type to lie, but so far he hasn't really impressed me. Been waiting 3 weeks for a response from him of whether or not he will give me the referral for the Potter MRI. And over a week for the interpretation of my EMG. But i am hoping when i talk to him, he will have something positive to say, or show some light at the end of the tunnel. I will update you as soon as the bastard calls me back.
But the EMG gave me piece of mind knowing i am not crazy, my nerve was delayed significantly meaning i am having entrapment somewhere down there.
I am terrified for what the future holds, but i promised myself i would at least take all the necessary avenues before i just give up, and you owe it to yourself to at least do that.
Re: Dr Conway
I have been examined very completely by the urogynecologist and she find all kinds of trigger points that are very painful. I am getting all kinds of of pain meds from 3 different doctors and none of them touch this pain one bit. Nerve meds muscles relaxers Valium suppositories. My life was once skiing biking running yoga now it is crying through my work day barely making it home from work walking my dogs and going to bed. No quality of life at all. The only thing that keeps me alive is my two dogs ......