Hi Katherine,
It's an interesting theory that the inflammation will decrease with PT manipulations and the nerve will be released from entrapment. Have you found a good PT to go to?
I think the type of PT you have is very important. I had some that made me worse but some that helped.
Violet
Awaiting official diagnosis
Re: Awaiting official diagnosis
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: Awaiting official diagnosis
Hello all,
I can’t believe it’s been almost 3 months since my last post. I am officially past the one-year mark of losing my uterus and gaining a debilitating disorder. November 9th was a tough day for me, but I didn’t let it get me down too much. As my pastor says – “if you’re not dead, you’re not done!” I’m not giving up the fight, and I am thankful for so many blessings in my life.
I’ve been going to an amazing physical therapist that knows and understands what PN is and everything that goes along with it. She is not in the directory on Pudendal Hope, but her name is Carol Gordon in Glastonbury, Connecticut. She is about 30 minutes from me and is a Godsend. I have been going to her once a week since October 1. I was told initially by Dr. Conway that it would take 3-4 months to see improvement, and I think that’s probably the truth. Every week it seems we are trying to find the balance as to what is too much for my body vs. not enough. One of the hardest things is that I have an incredibly high pain threshold during PT, and then my body reacts within 12-24 hours. Some weeks have been great; others not so much. PN is so unpredictable that the same treatment doesn’t always yield the same results. Carol has worked on my pelvis, spine, head, neck, sympathetic/parasympathetic systems, etc. all trying to find the “right door” in to fix this. She is 100% confident that we will get where we need to go – she’s done it before. She told me in 30+ years I am the most positive patient she’s ever had with PN. I am choosing to believe IT WILL WORK – we just need to take baby steps.
In mid-November I saw Dr. Tung (pain management) and he added amitriptyline to my prescriptions – only 10-20 mg per night. I had great results the first few days, then not so much (which is weird – it’s usually the opposite). He wants to try another nerve block, but I don’t know if I’ve had enough PT for that yet. Carol has had success in pudendal nerve manipulation to free PNE in other patients, but it takes a lot of time and patience. We are not there yet because she can only do so much before my central nervous system goes crazy (nausea, dizziness, sweating, all over pain, etc). She thinks I may have some symptoms of Complex Regional Pain Syndrome due to the damage and pressure on the nerve. I also have new symptoms of a fluttering sensation that runs down my left leg and sometimes into my left arm - it comes and goes but seems to be triggered by too much activity. It drives me crazy some days - it's like 100 butterflies flying up and down inside. One time my left leg even had tremors for a few minutes. It's scary when you can't control your body movement! But it make sense because it's the left side they believe is entrapped, and the one that hurts most of the time.
One new thing I am trying next week is acupuncture – I’ve read mixed results for it with PN, but Carol thinks it may provide some pain relief. I will take whatever I can get. If it doesn’t work I’ll stop – but at least I’ll try. The woman I am going to is an R.N., so she has good knowledge about the human body and nervous system issues. She is in the same office as Carol, but has a second satellite office only 8 minutes from my house. Jackpot for the location! That’s rare for me since I live in a rural area.
For work – my employer is still allowing me to work from home but their patience is wearing thin. I don’t know how much longer they will let this go on – it’s been over a year already. One good thing is my long term disability (for when I wasn’t working much at all) was approved in September and I got 7 months of pay retroactively which I put most in the bank. So – at least I have a little bit of a cushion should they relieve me of my duties. I still have LTD coverage but I am working too much to collect right now; because my ability to work fluctuates it can be re-opened at any point. The hardest thing is I can’t drive and I need to take breaks throughout the day to put in a “normal” day’s work. If I lose this job it will be VERY hard to find another that is so flexible. I have a friend that works in the main SSDI office of Connecticut that offered to help get me approved if it comes down to it. So – either way I will have at least some income. I want to work though – I just got a finance degree in 2017 and now I don’t know if I will ever use it. I have almost 20 years experience in my field and all I needed was that piece of paper to get to the next level. Ugh. Life is crazy that way.
Overall I am still in awful pain every day. It’s so bad sometimes I can’t even believe it’s real. My husband continues to be amazing. My kids are adjusting. It took me aback one day when my 12 year old daughter asked, “Mommy, are you handicapped now?” I said, “Yes I suppose I am but I hope it’s not forever.” I just wish my little one had more memories of the fun mom I used to be – between this and all the issues I had with severe anemia prior to the hysterectomy he doesn’t know the real me inside. He’s only 4. My prayer is that he will have new memories of me being the fun mom once I’m healed.
I hope no one minds that I continue to update my post – I am doing so in the hopes that anyone reading this in the future will get perspective, comfort, information, etc. in seeing someone’s whole experience with PN. So many posts on here are just bits and pieces of the PN journey; I am trying to keep mine going for as long as I deal with this monster (hopefully shorter rather than longer!).
I can’t believe it’s been almost 3 months since my last post. I am officially past the one-year mark of losing my uterus and gaining a debilitating disorder. November 9th was a tough day for me, but I didn’t let it get me down too much. As my pastor says – “if you’re not dead, you’re not done!” I’m not giving up the fight, and I am thankful for so many blessings in my life.
I’ve been going to an amazing physical therapist that knows and understands what PN is and everything that goes along with it. She is not in the directory on Pudendal Hope, but her name is Carol Gordon in Glastonbury, Connecticut. She is about 30 minutes from me and is a Godsend. I have been going to her once a week since October 1. I was told initially by Dr. Conway that it would take 3-4 months to see improvement, and I think that’s probably the truth. Every week it seems we are trying to find the balance as to what is too much for my body vs. not enough. One of the hardest things is that I have an incredibly high pain threshold during PT, and then my body reacts within 12-24 hours. Some weeks have been great; others not so much. PN is so unpredictable that the same treatment doesn’t always yield the same results. Carol has worked on my pelvis, spine, head, neck, sympathetic/parasympathetic systems, etc. all trying to find the “right door” in to fix this. She is 100% confident that we will get where we need to go – she’s done it before. She told me in 30+ years I am the most positive patient she’s ever had with PN. I am choosing to believe IT WILL WORK – we just need to take baby steps.
In mid-November I saw Dr. Tung (pain management) and he added amitriptyline to my prescriptions – only 10-20 mg per night. I had great results the first few days, then not so much (which is weird – it’s usually the opposite). He wants to try another nerve block, but I don’t know if I’ve had enough PT for that yet. Carol has had success in pudendal nerve manipulation to free PNE in other patients, but it takes a lot of time and patience. We are not there yet because she can only do so much before my central nervous system goes crazy (nausea, dizziness, sweating, all over pain, etc). She thinks I may have some symptoms of Complex Regional Pain Syndrome due to the damage and pressure on the nerve. I also have new symptoms of a fluttering sensation that runs down my left leg and sometimes into my left arm - it comes and goes but seems to be triggered by too much activity. It drives me crazy some days - it's like 100 butterflies flying up and down inside. One time my left leg even had tremors for a few minutes. It's scary when you can't control your body movement! But it make sense because it's the left side they believe is entrapped, and the one that hurts most of the time.
One new thing I am trying next week is acupuncture – I’ve read mixed results for it with PN, but Carol thinks it may provide some pain relief. I will take whatever I can get. If it doesn’t work I’ll stop – but at least I’ll try. The woman I am going to is an R.N., so she has good knowledge about the human body and nervous system issues. She is in the same office as Carol, but has a second satellite office only 8 minutes from my house. Jackpot for the location! That’s rare for me since I live in a rural area.
For work – my employer is still allowing me to work from home but their patience is wearing thin. I don’t know how much longer they will let this go on – it’s been over a year already. One good thing is my long term disability (for when I wasn’t working much at all) was approved in September and I got 7 months of pay retroactively which I put most in the bank. So – at least I have a little bit of a cushion should they relieve me of my duties. I still have LTD coverage but I am working too much to collect right now; because my ability to work fluctuates it can be re-opened at any point. The hardest thing is I can’t drive and I need to take breaks throughout the day to put in a “normal” day’s work. If I lose this job it will be VERY hard to find another that is so flexible. I have a friend that works in the main SSDI office of Connecticut that offered to help get me approved if it comes down to it. So – either way I will have at least some income. I want to work though – I just got a finance degree in 2017 and now I don’t know if I will ever use it. I have almost 20 years experience in my field and all I needed was that piece of paper to get to the next level. Ugh. Life is crazy that way.
Overall I am still in awful pain every day. It’s so bad sometimes I can’t even believe it’s real. My husband continues to be amazing. My kids are adjusting. It took me aback one day when my 12 year old daughter asked, “Mommy, are you handicapped now?” I said, “Yes I suppose I am but I hope it’s not forever.” I just wish my little one had more memories of the fun mom I used to be – between this and all the issues I had with severe anemia prior to the hysterectomy he doesn’t know the real me inside. He’s only 4. My prayer is that he will have new memories of me being the fun mom once I’m healed.
I hope no one minds that I continue to update my post – I am doing so in the hopes that anyone reading this in the future will get perspective, comfort, information, etc. in seeing someone’s whole experience with PN. So many posts on here are just bits and pieces of the PN journey; I am trying to keep mine going for as long as I deal with this monster (hopefully shorter rather than longer!).
-
stephanies
- Posts: 685
- Joined: Mon Oct 25, 2010 3:07 am
Re: Awaiting official diagnosis
Thank you for your update. I applaud you for your positive attitude! I understand that “pain anniversaries” can be difficult. This Friday will be five years since my pain became severe and next week will be 14 years since my whole ordeal began with a fall. It sounds like your PT believes the nerve is entrapped, I guess in scar tissue or a suture? I am not sure how your PT would be able to free a nerve under those circumstances.
Stephanies
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: Awaiting official diagnosis
Hi Katherine,
Just re-read through your story and wanted you to know I am saying some prayers for you. I remember those days when pain was all-consuming and I can only imagine how difficult it must be when you have little ones. Hope you are getting through the holiday season OK.
Violet
Just re-read through your story and wanted you to know I am saying some prayers for you. I remember those days when pain was all-consuming and I can only imagine how difficult it must be when you have little ones. Hope you are getting through the holiday season OK.
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: Awaiting official diagnosis
where is Dr. Potter located? I need to find!! 
Re: Awaiting official diagnosis
You can find Dr. Potter's contact info at the following link:
http://www.pudendalhope.info/node/58#NY
http://www.pudendalhope.info/node/58#NY
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.