Hi to everyone.
I was so thrilled to get the notice of the new site. Not because it was new but because I have not been a part of this for the past 18 months and had vowed that I would find time to get back on. I particularly wanted to check on Pianogirl as I had been following your posts from the hospital in France.
I have had this pain for over 5 years and was diagnosed with PN and PNE about 3 years ago. I have had Botox, injections, and Nerve blocks without success.
In March of 2009 my husband stepped out of the shower and fractured his hip. After 3 weeks of not being able to get his blood numbers where they should be and several tests , he was diagnosed with Multiple Myeloma, cancer of the plasma cells of the blood. He must of had it for some time for the cancer to have eaten the bone causing the fracture. It was devestating as it is not curable but treatable for a time. He has just finished weeks of radiation and 54 weeks of chemo and at present is in a "holding pattern", as desribed by the Drs. He is also walking short distances with a walker. Up unto now I have been pushing him in a wheel chair into the hospital twice a week for 24 weeks and once a week for the past 30 weeks. Needless to say my pain levels have been at their highest. We have a 45 minute ride to the hospital and hours to wait on some occasions. Thanks be to ice, my best friend it seems.
I usually start my day with lots of ideas in my head. When I start to put them to work I am reminded the pain is once again in control. Does everyone have the downhill slide in the afternoon . By dinner time the pain is unbearable and I have to fight my way to do what is necessary until I can curl up with my ice.
Thank you to everyone who has worked so hard to keep us informed and to give us a place to air our pain.
Shirl
Hello Everyone
Re: Hello Everyone
Sorry about this post.
It should have been in The Welcome area. It is most certainly not entertaining.
Shirl
It should have been in The Welcome area. It is most certainly not entertaining.
Shirl
Re: Hello Everyone
Wow Shirl
I am so sorry to read your post about your husband's turmoil and of course how you have coped through this terrible time...it is inconprehensible to be honest...I really feel for you and cannot imagine how you must feel now. Its good that ice helps you through this horrific time...I hope that you and your husband can pull through this tough time in your lives...you will b e in my prayers and thoughts as i head to my bed tonight.
At this time you need all the friends you can get....if we can help you we will try to do our best.
Best wishes
Amanda
I am so sorry to read your post about your husband's turmoil and of course how you have coped through this terrible time...it is inconprehensible to be honest...I really feel for you and cannot imagine how you must feel now. Its good that ice helps you through this horrific time...I hope that you and your husband can pull through this tough time in your lives...you will b e in my prayers and thoughts as i head to my bed tonight.
At this time you need all the friends you can get....if we can help you we will try to do our best.
Best wishes
Amanda
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Hello Everyone
Thank you Amanda,
I appreciate your comments and friendship. I am making time to take part in this Forum something I haven't done for the last 1 1/2 years. It makes me so sad that there has been no progress in controlling this horrible pain for so many. At my last Drs. appt. they told me I should go to France for surgery as I definetly have an entrapment and would begin the necessary paper work for our insurance. I am 72 years old in a few weeks and even if it was possible to leave my husband I would be hesitant to have surgery that doesn't fix the problem for sure. It helps some that I no longer have to push the wheelchair as my husband is more than twice my weight . I honestly don't know how we got through the past months but we did. Our son is now living with us and is a tremendous help. We also have a Personal Support Worker who comes for 3 hrs. a week and is wonderful.
I look forward to reading everyone's posts
Shirl
I appreciate your comments and friendship. I am making time to take part in this Forum something I haven't done for the last 1 1/2 years. It makes me so sad that there has been no progress in controlling this horrible pain for so many. At my last Drs. appt. they told me I should go to France for surgery as I definetly have an entrapment and would begin the necessary paper work for our insurance. I am 72 years old in a few weeks and even if it was possible to leave my husband I would be hesitant to have surgery that doesn't fix the problem for sure. It helps some that I no longer have to push the wheelchair as my husband is more than twice my weight . I honestly don't know how we got through the past months but we did. Our son is now living with us and is a tremendous help. We also have a Personal Support Worker who comes for 3 hrs. a week and is wonderful.
I look forward to reading everyone's posts
Shirl
Re: Hello Everyone
Oh Shirl....I'm just so sorry.
For what it's worth if there is any way that you can have the surgery, I think you should. Even if you only get partial relief, I want that for you! I'm so glad you finally have some help, and I hope it continues. Please let us know how you are doing!
For what it's worth if there is any way that you can have the surgery, I think you should. Even if you only get partial relief, I want that for you! I'm so glad you finally have some help, and I hope it continues. Please let us know how you are doing!
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
Re: Hello Everyone
Shirl, I'm sorry you are going through the pain of your husband's illness as well as your own. You must be under a terrible amount of stress right now. 
Many of us experience the downhill slide in the afternoon and evening like you do. I used to save my pain meds so I could take them in the evening when things got bad. Ice was a very good friend to me also -- I don't know what I would have done without it.
When you are caring for someone else you have to put your own needs on the back burner but I hope you will be able to take the time to get the care that you need also.
Hugs,
Violet
Many of us experience the downhill slide in the afternoon and evening like you do. I used to save my pain meds so I could take them in the evening when things got bad. Ice was a very good friend to me also -- I don't know what I would have done without it.
When you are caring for someone else you have to put your own needs on the back burner but I hope you will be able to take the time to get the care that you need also.
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.
Re: Hello Everyone
Hi Shirl,
I don't think we've ever "met" before, but I'm glad you've come back to the forum. I'm so very sorry for everything you and your husband have been through! How horrible for the both of you. Please count me in on the rally for friendship and support!
Yes, I too start a major downslide with the pain during the afternoon. I work full-time, which is very difficult. By dinner time, I'm all but crippled and have to rely heavily on my husband to help me wrap up the day. Mornings and early afternoon are no picnic either, but I defininely have more "I just can't ...." in the evenings.
Please keep us posted about how you and your husband are doing.
Warm, gentle hugs,
Karyn
I don't think we've ever "met" before, but I'm glad you've come back to the forum. I'm so very sorry for everything you and your husband have been through! How horrible for the both of you. Please count me in on the rally for friendship and support!
Yes, I too start a major downslide with the pain during the afternoon. I work full-time, which is very difficult. By dinner time, I'm all but crippled and have to rely heavily on my husband to help me wrap up the day. Mornings and early afternoon are no picnic either, but I defininely have more "I just can't ...." in the evenings.
Please keep us posted about how you and your husband are doing.
Warm, gentle hugs,
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: Hello Everyone
Thank you everyone for the kind words & support.
Sorry I haven't been back on line - too busy & too tired.
Has anyone posted "How to tell friends & family about PN" ? I don't know how to scan it and post it but if still needed I will have my daughter help me through it when she comes on Nov. 6tth. I would just like to change the last part where it says " there is something worse than cancer , it is chronic" I don't agree with that because although I have been in great pain I have still been able to enjoy my grandkids. My husband won't have that joy for much longer.
I think the author of this article may be someone called Jackie and if I remember correctly Violet had it printed in a medical magazine. Can you help me with that Violet?
Best wishes for less pain for everyone. Remember to smile it hurts a little less when you get one back.
Shirl
Sorry I haven't been back on line - too busy & too tired.
Has anyone posted "How to tell friends & family about PN" ? I don't know how to scan it and post it but if still needed I will have my daughter help me through it when she comes on Nov. 6tth. I would just like to change the last part where it says " there is something worse than cancer , it is chronic" I don't agree with that because although I have been in great pain I have still been able to enjoy my grandkids. My husband won't have that joy for much longer.
I think the author of this article may be someone called Jackie and if I remember correctly Violet had it printed in a medical magazine. Can you help me with that Violet?
Best wishes for less pain for everyone. Remember to smile it hurts a little less when you get one back.
Shirl
Re: Hello Everyone
Shirl, the article published in Medical News Today was named "Taking the Shame out of Pudendal Neuralgia". I think the one you are thinking of about telling friends and family was written by JackieO. If you have a copy of that it would be great if you could re-post it on this forum!
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.