Health Organization for Pudendal Education

Faith,

How are you doing after your Botox? I've been off the internet for a week and wonder how you are doing.

cari

Faith, I am also wondering how you are doing.

Best,

Don

Thanks for asking guys. It's been 3.5 weeks since the botox. Honestly I'm not doing very well. The bad part of the flare is over (the part where I couldn't hardly walk or do anything but lie on the couch), but I am still in more pain than I was before I went. I've been trying to go back to PT and internally my muscles are more spasmed (especially the pubo and ilococcygeous muscles) than they were before....so weird. I have a lot of pain around my coccyx and I think the ST ligament (not injection pain anymore). I am just hoping this flare will eventually die down and that I am not worse long term from the botox. Although it wouldn't be too surprising as every other treatment I have had has only seemed to make me worse.

I did decide to quit my job...it was just too hard. Way too much sitting and I have tons of feet/leg pain/burning that I can't stand for 8 hours. I have peace about quitting. Now I am just hoping to either find some successful treatment or find a better way to manage the pain. Am awaiting a call from Dr. Hibner to see what to do next.

Good luck Faith. I'm sure Dr Hibner will be able to sort it all out for you. Take care.

I'm sorry to hear that you're still suffering from the botox injections, Faith. I am sending wishful healing thoughts your way. I am confident that you will feel better as the effects wear off.

I too have also recently decided to throw in the towel job-wise. Sure I can stand at my desk all day, but then I collapse and cry in pain at home. Not worth it. After obtaining a professional degree, working for the same great employer for 24 years at a job that I loved, I (like you) am still at peace with my decision. There is nothing more important in life than spending quality time with family and those who are dear to you.

Thinking about you.

Hi Faith,
I am really sorry to hear that you are having a hard time. It's really tough to face the pain every day and still keep a positive attitude. I don't know if you have tried Lyrica or oxycodone but they have both helped me get thru the day. It's good to hear that you have come to terms with giving up your job for awhile. People so often allow themselves to be defined by their work and it is difficult to give up that part of your life but there are times when you need save your energy for yourself and your family. I know that there are better days ahead for you. Sometimes you just need to take things one day at a time.

All My Best,

Don

Ah Faith....I am in the same boat with the decision to keep working or not. I worked my 3 (12) hr shifts last weekend and then went to check myself into the ER for pain. Stayed 2 nights as an inpatient on a Dilaudid PCA. I just can't wrap my head around quitting my job...I feel like I'm letting this disease beat me and I have not mentally given in to that yet. I may be right behind you on this one.....

cari

Wow Cari, so sorry to hear about your hospitalization. I went to the ER last year and it was the biggest waste of money. They tried to give me Lortab (which I already had) and tordol. Spent $300 for nothing.

I personally felt no emotional attachment to nursing. Being a wife and mother is my main responsibility I don't like working as a nurse in a hospital in the States. It was just what I had to do to make money for my family for a while. We had planned to return as missionaries long term overseas, which is the aspect of nursing I absolutely love. But PN entered my life. You can read my blogpost about some of my thoughts on quitting http://thepurposeofpain.blogspot.com/20 ... ng-up.html.

I think it comes to a point where you have to think about quality of life. I was trying to work and then having to come home and lay on the couch while my mom cooked/cleaned and raised my daughter. That's no life. I've lived with this for almost 3 years and the last year I have debilitated quickly. As it stands from what Dr. Hibner's nurse said the earliest surgery schedule isn't until July 2012 so I'm looking at almost another year (possibly longer if Hibner wants me to have more injections, which is what I am afraid is going to happen) before I can have surgery, if I decide to go that route. Sometimes I think maybe I just need to look into other pain management options though. Still thinking....

Hi Faith,
have you considered Dr. Conway? Personally If I needed decompression surgery I would probably go to him because of the lack of waiting time. Karyn did so well with him, I really do think the new surgical technique he is using makes him a viable option. I assume you waited several months to see Dr. Hibner and now a year to surgery - that just isn't right
Anyway I'm sorry about your job and that you are not feeling well. I quit working too and now that I am not so overwhelmed, I am teaching Sunday school to the tweens and teens, and am helping a friend start a new neighborhood ladies' Bible study - There is a mission field right here in the USA. I am finding that no matter how bad I feel before and after, when I am actually out there teaching the Word I forget all about the PN. I can also speak articulately when teaching although if I try to just have a regular conversation before or after, I can barely string a sentence together because of the meds. It's really called my attention to how God can equip us to do His work even when it is definitely beyond our own strength. I hope the decision not to work leaves you with lots of time to lounge around in your PJ's and enjoy your daughter, but also gives you some freedom to do the Lord's work.

Faith wrote:I think it comes to a point where you have to think about quality of life. I was trying to work and then having to come home and lay on the couch while my mom cooked/cleaned and raised my daughter. That's no life. I've lived with this for almost 3 years and the last year I have debilitated quickly. As it stands from what Dr. Hibner's nurse said the earliest surgery schedule isn't until July 2012 so I'm looking at almost another year (possibly longer if Hibner wants me to have more injections, which is what I am afraid is going to happen) before I can have surgery, if I decide to go that route. Sometimes I think maybe I just need to look into other pain management options though. Still thinking....

Hang in there, Faith. You've come up against an unfortunate reality about having surgery with Dr. Hibner--it can take a commitment of years to get your treatment completed, especially if you require bilateral surgery since he only does one side at a time. That's a long time to wait. There's also a risk for some that they might lose their insurance before they can complete treatment. I learned that ob-gyn's are now coming out with guidelines to give to newly pregnant patients about what to expect if they lose their insurance due to unforeseen reasons during a pregnancy--it's become that common in these economic times that now patients are being warned up front to learn their options.

I hope you will look at all of your options and that the right path for you will be clear.