Hi Cari,
Wow, I'm sorry you are in that dark place right now. I remember feeling like that and feeling so out of place with my friends because they had no clue what I was going through. I hate to admit it but 7 years after surgery there are times I have to remind myself any problems that I experience now are trivial compared to that dark time in my life and to what some of you are going through right now. The good news is, there can be life after PNE. You will probably never be the same again because you will have a completely different perspective on life and what is truly important. But you will have changed for the better -- you will be stronger and more caring.
It's hard to see through that dark cloud you are in right now but there will come a day when you will be able to look back and be proud of yourself for staying strong and for getting through that dark tunnel. You're a fighter -- you can do this.
Hugs,
Violet
Oh, and I'm afraid I've become a clothes horse again -- no more of those ugly baggy pants I used to wear. I know it's trivial....
Needing some support tonight
Re: Needing some support tonight
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: Needing some support tonight
Thank you ladies, your support means the world to me. It's so nice to be amongst friends here who truly GET IT! I should lower my expectations of my friends, how would they ever begin to realize the horrific-ness of this disease? They can't and it's not their fault. I need to keep telling myself that.
Once again, you all got me out of the dark hole.
xxxxxxx00000000 cari
Once again, you all got me out of the dark hole.
xxxxxxx00000000 cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Re: Needing some support tonight
Cari,
You are right, it's important to be able to relate to people who "get it", whatever it is that you are going through. But I think it's also good to have friends who do have a different perspective on things. Sometimes talking about the trivial things is okay. Or maybe they are dealing with something completely different, but just as horrific as you, and you can't understand but can be there for them. Diversity is okay.
I've learned that it is good that we are not all going through the same trials and tribulations. My husband took his own life about a year and a half ago. I've found support and friendship through a grief group for suicide survivors--they are the ones who "get it". But I also like hanging out with my "normal" friends (I use the term loosely...just referring to the friends I've made through everyday circumstances). Sometimes I find myself getting angry at them for the trivial stuff, like when one was complaining about their husband eating some leftovers they had in the fridge. I just wanted to shout at them how lucky they were to have a husband, and I'd give any of my leftovers to have my husband back. Then I also realized that they didn't mean any disrespect by it, and it was just general chit-chat. I wondered how many times I've said something that possibly affected others harshly, and I didn't even realize (and of course didn't intend) it.
I also thought it was amazing how we can somehow manage to handle what's been dealt to us. A good friend of mine was diagnosed with breast cancer about a week before I lost my husband. Whever we would get together, it always seemed we were more concerned about how the other one was doing. I could not imagine what she was going through, and she couldn't understand my situation. And I don't think either of us would have chosen to trade places if given the choice. Dealing with this stuff definitely makes you stronger. Having friends helps you when you don't feel that strong. Life will never be the same for either of us again, but I know we are both better now than we were a year ago.
The physical and emotional pain can really take its toll. I know it is hard, but try to let yourself become involved in some of the trivial things again. Sometimes it can be a good escape. (And hey, researching new kitchen appliances last fall kept my mind occupied for a while, even if only temporarily for a short while.)
I hope this didn't sound preachy. And I hope you know I'm not trying to say that the pain you are dealing with is not a significant thing to worry about. But try your best not to let it defeat you.
Take care,
Anita
You are right, it's important to be able to relate to people who "get it", whatever it is that you are going through. But I think it's also good to have friends who do have a different perspective on things. Sometimes talking about the trivial things is okay. Or maybe they are dealing with something completely different, but just as horrific as you, and you can't understand but can be there for them. Diversity is okay.
I've learned that it is good that we are not all going through the same trials and tribulations. My husband took his own life about a year and a half ago. I've found support and friendship through a grief group for suicide survivors--they are the ones who "get it". But I also like hanging out with my "normal" friends (I use the term loosely...just referring to the friends I've made through everyday circumstances). Sometimes I find myself getting angry at them for the trivial stuff, like when one was complaining about their husband eating some leftovers they had in the fridge. I just wanted to shout at them how lucky they were to have a husband, and I'd give any of my leftovers to have my husband back. Then I also realized that they didn't mean any disrespect by it, and it was just general chit-chat. I wondered how many times I've said something that possibly affected others harshly, and I didn't even realize (and of course didn't intend) it.
I also thought it was amazing how we can somehow manage to handle what's been dealt to us. A good friend of mine was diagnosed with breast cancer about a week before I lost my husband. Whever we would get together, it always seemed we were more concerned about how the other one was doing. I could not imagine what she was going through, and she couldn't understand my situation. And I don't think either of us would have chosen to trade places if given the choice. Dealing with this stuff definitely makes you stronger. Having friends helps you when you don't feel that strong. Life will never be the same for either of us again, but I know we are both better now than we were a year ago.
The physical and emotional pain can really take its toll. I know it is hard, but try to let yourself become involved in some of the trivial things again. Sometimes it can be a good escape. (And hey, researching new kitchen appliances last fall kept my mind occupied for a while, even if only temporarily for a short while.)
I hope this didn't sound preachy. And I hope you know I'm not trying to say that the pain you are dealing with is not a significant thing to worry about. But try your best not to let it defeat you.
Take care,
Anita
Re: Needing some support tonight
I'm so sorry, Anita. I had no idea. You've been through so much...and yet more happened. I'm hoping for the best for you. I'm glad you stopped in to talk.acw wrote: My husband took his own life about a year and a half ago.
C.
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: Needing some support tonight
Thank you, Anita. I am now open to the thought of surgery. I just can't live like this. Left a message with Dr. Hibner's office today.
cari
cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)