Health Organization for Pudendal Education

My name is Kara. I'm Kind of scared to be here. I run the Pudendal Nerve Discussion Boards on the Interstisial Cytitis Network and also moderate or rather volunteer to oversee what happens on the board. I have taken a Haiatus for health reasons. I am very sick and need some time to myself to regroup before I can be of any help to anyone else. It's time for me to get some help or else I can be of no help or support to my PNE board on the ICN. So one of my best friends suggested that I come here for the gentle support that I need. I hope this is the right place to be.

I will run through quickly what I have been through as in introduction and then I will tell you the relevant PNE portion in more detail. Here we go....This has been my past Eleven Years in a big Nut Shell! Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)....That's it as Described on my Signature on the ICN.

As far as PNE goes here's my story: Anyway......back to my own individual case. I had my Pudendal Nerve Decompression Surgery a year and 8 months ago. I was unable to sit for no longer than 3-5 minutes and if I sat longer than that, I would suffer immensely with urgency and frequency (IC like) symptoms for weeks after. I would feel the need to use the bathroom every 5 minutes just like I did when I had the end stage IC.

Cut to Today: I can sit for several hours with the aid of my pudendal nerve cushions (I have 3), my pain meds, muscle relaxers, and 2 nerve medications. Sometimes I still have to lie down and use ice all day long but those days are few and far between. I would say that my sitting has improved 95%. My overall lifestyle has improved 50%. Going into this operation, there were absolutely no guarantees that it would work and maybe not at all. There was the possibility of possible improvement on my pain levels and that did happen. My pain has decreased significantly, enough to say that the operation was well worth it. There has been talk about me going back in and having Dr. C do the TG operation if I want to try for more improvement with respect to the pain, but I'm not sure that I want to mess with the good outcome that we did get.........

I wish I had 100% pain relief, but when you have a case as complicated as mine is, sometimes all you can hope for is a 10% decrease in pain. At the point where I was at.....I was willing to try anything. I'm glad I did and I'm glad I found Dr. C. He did a great job and I know that he's there for me, should I want to try the more aggressive method.

So with my pain meds, muscle relaxers, nerve medications, and all of my operations behind me, all I can do is look FORWARD and keep on praying for the good days to come. On the my good days or hours....I'll take them and run, on my bad days, I'll crawl into bed with my kitties and try not to beat myself up so much and then try to take care of Kara and hope the pain goes as fast as it came on.

One hour at a time, that's how I live..............

I hope to find some phone buddies on here as I don't want to sit on the computer all day and type back and fourth. I am a talker, my good friends will tell you that, but I love to laugh and sometimes vent and cry too, that's just Human and part of life. I like to hear about other people and how they live their lives around all of this pain and suffering.

Hi Kara, I remember you from before your surgery. We talked once, years ago. I'm glad you are doing as well as you are. I too would be scared of a re-do surgery, but of course it's an option if things change.

Wishing you all the best!

Kara34 wrote:My name is Kara. I'm Kind of scared to be here. I run the Pudendal Nerve Discussion Boards on the Interstisial Cytitis Network and also moderate or rather volunteer to oversee what happens on the board. I have taken a Haiatus for health reasons. I am very sick and need some time to myself to regroup before I can be of any help to anyone else. It's time for me to get some help or else I can be of no help or support to my PNE board on the ICN. So one of my best friends suggested that I come here for the gentle support that I need. I hope this is the right place to be.

Hello Kara and welcome, welcome, welcome! I am so glad you are here.

Thank you for sharing your story - you have been through so much, so many surgeries, so many hopes and dreams. Like you said, even 10 percent improvement is good with this disease, but we always still hope for a way to get out of pain.

I hope you take some time to read around the board and get to know some of the names of those you relate to. There are so many different stories; we come from many different backgrounds with our PN or PNE - how it started, whether or not we also have IC, how many procedures we've had, etc. Some people are just starting and have not had any surgeries; others have had surgery and like you, are contemplating whether or not to have a re-do surgery.

When I came here I read a lot, and sent private messages to people that I felt might help answer questions I had. This is how I got to know people better. The surgery section and case updates section are also pretty active with discussions about PNE surgery -- whether to have it, where to have it, which type of surgery is best for their case, how to prepare for surgery, etc. I like reading updates to see how people are doing as they go through the stages after surgery. It is time for me to post about my surgery, as I am now 4 months out, which is a milestone, and I want to let people know how I am doing.

So I hope that helps a little and that you feel welcome. It sounds like you are debating a possible future re-do of your PNE surgery, and you will find a lot of people here who have gone through re-do surgeries who share about it.

There is a lot here, and with all your experience you will be as much of a light to others as they are to you! Welcome....

- Sharon

Welcome to HOPE, Kara!
I'm glad that you've joined us and I think it's very admirable of you to be so active on the ICN forum despite your own struggles. And it sure does sound like you've got a lot of them. Very realistic of you to take a break to regroup. I'm so sorry you're not feeling well. What are your chief complaints?
I hope you find the answers and support you're seeking. The folks here are truly wonderful!
Warm regards,
Karyn

Kara, thanks for all you have done to raise the awareness of PNE on the IC board. You are an amazing person to have gone through all you have and still remain sane!

It's great that you have seen as much improvement as you have and there's a chance you may yet continue to see improvement. I'm 6 years post-op and still improving! I've even gone back to work so I don't do much phone time like I used to but wanted to welcome you to the PNE forum.

Violet

Welcome Kara. Boy, you have been through ALOT. I admire your courage! You will find this forum very helpful and supportive. A prayer is sent for your continued recovery.

Violet M wrote:Kara, thanks for all you have done to raise the awareness of PNE on the IC board. You are an amazing person to have gone through all you have and still remain sane!

Yes I agree. Thank you for bringing more awareness to this condition. You must be an incredibly strong person.