Health Organization for Pudendal Education

Princesspokie wrote:I'm sorry you feel that I took a gable/risk with my life! I feel a bigger risk would have been to lose my family that I love and adore way to damn much to not say I tried everything to make my life better for my family!

Well, ANY surgery is a risk. Like many others, I tried every "conservative" treatment out there, with zero benefit. Not only that, my symptoms were progressing and escalating.
It was clear to me that the path I was on was a road to no where. It was unacceptable to me to live like that for the rest of my life; so I viewed surgery as a CHANCE. I didn't go into it thinking I would be completely cured but it was my chance for improvement of quality of life. Surgery is a very personal decision and not for everyone.

AroraNightfire wrote:Its been too long for me though.

There are many people out there who have had their symptoms for much longer and have benefitted from surgical treatment.

AroraNightfire wrote: I think the damage has already been done for me.

I would agree. We've all incurred "damage". Hence, the position we're in.

AroraNightfire wrote: I don't think surgery can correct it. I'm not willing to go through it either.

Which PN surgeon has informed you your condition can't be corrected? I sincerely hope you find a treatment and/or a level of comfort you can live with.
Kind regards,
Karyn

Karyn,

I was just wondering what percentage you would say you are better now after your surgery(ies)?

Hi Faith,
I've got a lot going on besides the PN, so it's difficult to assign a "percentage better". I can comfortably say that a lot of my PN symptoms are have either resolved completely, or become much better. In regards to the PNE, I no longer have the sensation of something stuck up my vagina or rectum. The internal vaginal and rectal irritation (felt like my insides were scraped raw) is gone. My colon no longer spasms, nor do I bleed rectally anymore. I still have motility issues with bowel movements, but it's improved since surgery. I used to have severe bladder pain and dysfunction - urgency and frequency. No more pain with urination and no more frequency. The urgency isn't completely gone, but it's much improved. The "PN sitting pain" is gone. This doesn't mean I can comfortably sit for any length of time, but it does mean that I'm not getting shooting, electric shocks up the vagina or rectum anymore. Actually, that used to happen even without sitting, but sitting would increase and intensify the electric shocks.
What I'm left with now, is: A torqued sacrum, severe SIJD, Piriformis Syndrome, Tarlov Cyst Disease, ischial tuberosity pain, pelvic & leg joint, tendon and ligament pain, bilateral hip pain, lower abdominal & groin pain, perineal pain, and various neuropathic pain bilaterally in my legs and feet.
I know I've probably left some stuff out; but DAMN it's hard keeping track of all of this!
Karyn

I see it if there is a chance that the burning pain will lessen or go away, then I'm going to take it. I'd have surgery tomorrow if I could. I know I'm entrapped and that even lying back in this recliner, I'm damaging the nerve more each day. I don't want to wait until it's too late. And I trust in God. I want to give up but can't. I have an appt. with Antolak at the end of November but will probably have to cancel. He's out of network and to costly for me right now. I think it's a shame that everyone on here cannot afford the help they need so desperately. The things I could say about that but won't. Glad your happy with your choice of surgery and keeping your family. I broke off my engagement because of this. It's taken so much from me already. I feel surgery would give me a chance.

Rea,

I just had surgery with Dr. Antolak on Sept 10th. I am doing so much better already! Just a little FYI, I got my EOB in the mail and my surgery cost was $3897.00. that was,t with the hospital bills though, that was just the surgeon portion. I would go to your appointment! Sometimes for special health conditions when you need to see a specialist insurance companies will make exceptions. I hope you get better!

Nichole

Ps I really liked Dr. Antolak!

rea,
you have rights with your insurance company, in terms of being entitled to go out of network if nobody in network provides the specialized services you need.
I fought an epic battle with my insurance company and won - nobody wants to have to learn the intricacies of the insurance world and square off head-to-head with them, but I am living proof that it can be done, even when you are distracted by pain and doped out of your mind on drugs. It takes a lot of writing and documentation because they make you appeal EVERYTHING in writing, but I want to encourage you that it is do-able.
A lot of these docs have reduced rates for self-pay patients for humane reasons. I was up against a wall time-wise like you are, so I was able to get a reduced rate from my surgeon, clean out my savings, and take out a loan from my credit union to pay the surgeon and the hospital. Then when the surgery was done, the date of service fell within my coverage period, so the insurance knew I was not going to go away if they just strung me along until I lost the policy. So basically, self-pay gave me indefinite time to appeal (and sue if necessary, but I didn't have to). Caution: before self-pay you must try once to get the procedure approved by insurance and get an initial denial 1st, or they will deny you later on the basis that you did not try to get precertification. I was reimbursed bit by bit, long story, but I finally got my last check this week at 6 months post op and I have been fully paid for, plus my surgeon was paid more because the insurance reimbursement rate was greater than the humane rate he gave me. Don't give in!

Princess,
I wish you continued improvements with your surgery! Please keep in mind that recovery is a bit of a roller coaster ride - try not to get discouraged if it seems you're doing well one day and not so well another day. Things will eventually even out.

Rea,
I'm so very sorry about your engagement. I sincerely hope you get the chance we all deserve for a possible, better quality of life.

Kind regards,
Karyn

I hope you did it for you and not just your family. Dont take my opinion personally. Remember opinions are like as**oles everyone has one.

I checked and found out Skaribas, Popeney, and Ansell are all in my network..I've been waiting on Wendy (she schedules appointments) to call for about a month. I'll keep waiting. Even though I'll probably have to cancel Antolak, I still have hope that I'll get the call from Houston. At the end of Oct. I have about 30 sick days left..hope that's enough to get me through the school year. If not, boy am I in a jam.
I appreciate all the encouragement and support.
Thanks for the advice ladies...don't know what I'd do without it. I know I'm further along in this journey from the roads you have already traveled. (Sounds like I'm writing a song.)
Violet- You're 80% better but you're still on here, helping everyone you can. Thank you so very much.

Karen I hope you can back up what you just said to me. Who has had symptoms longer than 9years and is now cured? Please do tell.