Violet,
Thank you. I appreciate it. See you on the other side. Will update when i return. Common sense tells me one of the best pelvic surgeons in the united states would have reasons for what his plan is to help me. Better Hibner than local general surgeon who did my last 3 surgeries and keeps cutting unknown nerves. Have to trust someone at some point or stay like i am. By the way, do you know what are the stats on Botox? My new local pelvic therapist thinks botox is a bad idea because of urinary and fecal incontinence. If it did take pain from pudendal nerve area, it would only be temporary(right??) Is incontinence temporary too? Sometimes, is it permanent? Sometimes does it not happen at all? Is this why insurance wont cover??
My recent evaluation with Dr. Hibner
Re: My recent evaluation with Dr. Hibner
I haven't tried Botox but my understanding is that it lasts for 3-6 months. I don't remember any people posting about having incontinence from it. Theoretically the potential for incontinence is there but I think someone as experienced as Dr. Hibner would know how to inject it correctly to try to avoid that. There have been a handful of people I have seen post or know personally who had a bad reaction to Botox but that is not typical. One guy I knew had it injected into his bladder which didn't turn out well. I think Ezer on this forum had a bad reaction to it. You can do an advanced search using his username and key word Botox to find what he said about it. One other person I remember posting who said they felt physically ill for awhile after taking Botox. Those are the 3 reactions I can remember hearing about but these are not the norm. But most people don't have a problem at least from what I've read.
If it's coded right you might be able to get insurance to pay for it but I'm not sure what the coding would need to be. Maybe someone who has gotten it recently can tell you.
Violet
If it's coded right you might be able to get insurance to pay for it but I'm not sure what the coding would need to be. Maybe someone who has gotten it recently can tell you.
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: My recent evaluation with Dr. Hibner
Violet,
Thank you for your response re botox...and for reading and responding to all my crazy questions/concerns...and thank you on behalf of everyone else for that matter. I have mentally committed to going thru with proposed surgical plan. I don't understand it, but i have committed. Thank you for your prayers too. The more i over analyze..the more confused i get. Will update you all when i return..thank you all for making me feel like i'm not going thru it alone.
Aunt Netty
Thank you for your response re botox...and for reading and responding to all my crazy questions/concerns...and thank you on behalf of everyone else for that matter. I have mentally committed to going thru with proposed surgical plan. I don't understand it, but i have committed. Thank you for your prayers too. The more i over analyze..the more confused i get. Will update you all when i return..thank you all for making me feel like i'm not going thru it alone.
Aunt Netty
Re: My recent evaluation with Dr. Hibner
It's OK to have crazy questions and concerns. Believe me, I have had plenty while going through this! Stay strong and you will get through this.
Hugs,
Violet
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: My recent evaluation with Dr. Hibner
Hello my pudendal friends,
I went to Phoenix. My presurgery appt wasn't even with Dr. Hibner, or the other Doctor that i met when i was there for evaluation. It was with a student doctor who was not even going to be involved in my surgery and all about me signing and agreeing to procedures without risks and benefits explained. I signing papers that i agree to pay thousands when the insurance won't cover botox. They didn't give me a copy of that. Don't even know what is was but it was a lot of money. I was told my records would not be released until it was paid in full. I was very frustrated with that. Every time i tried to interject a questions, she said you should just cancel your surgery. Very frustrated. Anyway, Hibner came in to talk to me before the surgery. I told them i have no pain management at home as we cannot find anyone who accepts pelvic patients, the anesthesiologist piped in and said because of money. Was glad to hear someone at least say that. They make their money off of injections and their therapy, neither of which they can provide for my circumstances because i'm getting them in AZ. I agreed to do it anyway, that was April 15th. i had both ovaries and tubes removed, adhesions removed from my sigmoid and distending colon, bladder distension, bilateral pudendal blocks, 10 botox shots to left vag wall, botox to obturator inturnus, botox to psoas muscle, and botox to piriformis muscle. They could only prescribe me with narcotic pain med for 5 days following the procedure, and ibuprofen, acetaminophen, and muscle relaxer. It was outpatient. The next day my legs, ankles and feet were very swollen, My sister called their office and nurse called back and said that happens sometimes with botox and keep them elevated. I'm not gonna lie, i was in a lot of pain, and still am. I returned home to Ohio to recover on April 19th (that was a fun flight as you can imagine). They also gave me colace to take two times a day and told me to drink plenty of fluids, which i did. They told me it is common not to have bowel movement for several days following surgery. Anyway, April 20th, I had my first urge to have a bowel movement and realized i could not push out stool as my muscles are temporarily..i hope...paralyzed by botox. I had a rectal prolapse. So April 21st, i went to emergency room as advised from my fam doc. They would not give me anything for pain...like my drug seeking behavior i intentionally prolapsed my own rectum. I didn't even know that could happen. I took my surgical and med reports. They said they didn't need to see them. They pushed it back in and told me to consult with my fam doctor as they are not a pain clinic. That night i hand delivered stool with my fingers pushing it out from all sides...with enemas which were not very helpful. It took hours. I was screaming in pain and trying to poop on floor like a dog, covered in blood and stool. I had to get it out, because it was like having a baby stuck in the canal the urge to get it out was that strong. I was begging for mercy from God. The next day i called my fam doc. They sent me to different hospital er at Trumbull memorial, told me they would phone ahead with orders. The first doctor i saw said they already pushed it back in so what do you want us to do. We are not a pain clinic. So i used my cell phone and called my family doctor. They came back in the room and ordered an x ray..which i did. Showed i was impacted...Then they ordered a ct scan and when i questioned why i would need that when xray showed i was impacted, that Doc said are you refusing treatment...i was like who..no i just asked a question as i already have so many expenses i cannot afford, She was so mean, I could not believe it. She didn't answer my questions, she said your either refusing treatment or not, hit this button when you decide and let me know and walked out. So i was in so much pain i hit the button, nurse came in and i agreed to cat scan. Cat Scan showed i was impacted, already knew that from x-ray..it's all about money i think. A nicer doctor came in and told me ct scan showed impaction and i said does that mean i am going to have to "deliver" the rest by hand too. She said, unfortunately, yes honey...I added milk of magnesia to my colace treatment. They came in to discharge me and i asked if they were sending my anything for pain. She said you refused to be admitted so we cant help you. It's too late you were already discharged. I said no one ever said anything about admitting me, I need admitted, i thought that is why my doc sent me here, especially if they can help me. So she reluctantly agreed to have her boss come and talk to me. 20 min later her "boss" came in the room and said that was a mistake, we were not going to admit you, she should never have told you that, but we are not a pain clinic and we cannot give you anything for pain. I left, barely able to walk and in tears. That night i delivered my other "stool babies" by hand screaming and crying, bloody and crappy...then i thought it was finally over, but the next day i went through the same ordeal for hours of screaming, enema's and hand delivering. Well, i must have passed it all as i am now wearing depends and don't even know the diarrhea is coming out until i feel the wetness running down my leg. So today i thought it was finally over as i didn't take the milk of magnesia yesterday, but it wasn't, i have changed my adult diapers 5 times today, i don't even know its coming out until i feel the wetness. Whatever. So humiliated i have nothing left to give. So my family doctor's office called and they want me to consult with a colo-rectal surgeon. Why, when all you do is keep shoving it back in, i can do that myself..as you can tell im frustrated, in pain, cannot sit, and standing to type this right now. I called Hibners office, to ask their advice. They called me back and said ER doc called already and notified them. He will not be able to help with that i do whatever my family doc advises...like it's no big deal...Whatever. So here i am, I will try to start addressing that tomorrow. Don't know where to go, I guess i will have to find one. Isn't that what they are supposed to do. My doc said Trumbull Hospital doesn't have a colorectal surgeon. So why did he send me there. So now i have to find one on my own. Whatever. I'm done. I'm hurting , I'm humiliated, and i'm frustrated. Should have went to a vet, because i'm sure they would not let their dog suffer like this. Whatever. I'm done.
I went to Phoenix. My presurgery appt wasn't even with Dr. Hibner, or the other Doctor that i met when i was there for evaluation. It was with a student doctor who was not even going to be involved in my surgery and all about me signing and agreeing to procedures without risks and benefits explained. I signing papers that i agree to pay thousands when the insurance won't cover botox. They didn't give me a copy of that. Don't even know what is was but it was a lot of money. I was told my records would not be released until it was paid in full. I was very frustrated with that. Every time i tried to interject a questions, she said you should just cancel your surgery. Very frustrated. Anyway, Hibner came in to talk to me before the surgery. I told them i have no pain management at home as we cannot find anyone who accepts pelvic patients, the anesthesiologist piped in and said because of money. Was glad to hear someone at least say that. They make their money off of injections and their therapy, neither of which they can provide for my circumstances because i'm getting them in AZ. I agreed to do it anyway, that was April 15th. i had both ovaries and tubes removed, adhesions removed from my sigmoid and distending colon, bladder distension, bilateral pudendal blocks, 10 botox shots to left vag wall, botox to obturator inturnus, botox to psoas muscle, and botox to piriformis muscle. They could only prescribe me with narcotic pain med for 5 days following the procedure, and ibuprofen, acetaminophen, and muscle relaxer. It was outpatient. The next day my legs, ankles and feet were very swollen, My sister called their office and nurse called back and said that happens sometimes with botox and keep them elevated. I'm not gonna lie, i was in a lot of pain, and still am. I returned home to Ohio to recover on April 19th (that was a fun flight as you can imagine). They also gave me colace to take two times a day and told me to drink plenty of fluids, which i did. They told me it is common not to have bowel movement for several days following surgery. Anyway, April 20th, I had my first urge to have a bowel movement and realized i could not push out stool as my muscles are temporarily..i hope...paralyzed by botox. I had a rectal prolapse. So April 21st, i went to emergency room as advised from my fam doc. They would not give me anything for pain...like my drug seeking behavior i intentionally prolapsed my own rectum. I didn't even know that could happen. I took my surgical and med reports. They said they didn't need to see them. They pushed it back in and told me to consult with my fam doctor as they are not a pain clinic. That night i hand delivered stool with my fingers pushing it out from all sides...with enemas which were not very helpful. It took hours. I was screaming in pain and trying to poop on floor like a dog, covered in blood and stool. I had to get it out, because it was like having a baby stuck in the canal the urge to get it out was that strong. I was begging for mercy from God. The next day i called my fam doc. They sent me to different hospital er at Trumbull memorial, told me they would phone ahead with orders. The first doctor i saw said they already pushed it back in so what do you want us to do. We are not a pain clinic. So i used my cell phone and called my family doctor. They came back in the room and ordered an x ray..which i did. Showed i was impacted...Then they ordered a ct scan and when i questioned why i would need that when xray showed i was impacted, that Doc said are you refusing treatment...i was like who..no i just asked a question as i already have so many expenses i cannot afford, She was so mean, I could not believe it. She didn't answer my questions, she said your either refusing treatment or not, hit this button when you decide and let me know and walked out. So i was in so much pain i hit the button, nurse came in and i agreed to cat scan. Cat Scan showed i was impacted, already knew that from x-ray..it's all about money i think. A nicer doctor came in and told me ct scan showed impaction and i said does that mean i am going to have to "deliver" the rest by hand too. She said, unfortunately, yes honey...I added milk of magnesia to my colace treatment. They came in to discharge me and i asked if they were sending my anything for pain. She said you refused to be admitted so we cant help you. It's too late you were already discharged. I said no one ever said anything about admitting me, I need admitted, i thought that is why my doc sent me here, especially if they can help me. So she reluctantly agreed to have her boss come and talk to me. 20 min later her "boss" came in the room and said that was a mistake, we were not going to admit you, she should never have told you that, but we are not a pain clinic and we cannot give you anything for pain. I left, barely able to walk and in tears. That night i delivered my other "stool babies" by hand screaming and crying, bloody and crappy...then i thought it was finally over, but the next day i went through the same ordeal for hours of screaming, enema's and hand delivering. Well, i must have passed it all as i am now wearing depends and don't even know the diarrhea is coming out until i feel the wetness running down my leg. So today i thought it was finally over as i didn't take the milk of magnesia yesterday, but it wasn't, i have changed my adult diapers 5 times today, i don't even know its coming out until i feel the wetness. Whatever. So humiliated i have nothing left to give. So my family doctor's office called and they want me to consult with a colo-rectal surgeon. Why, when all you do is keep shoving it back in, i can do that myself..as you can tell im frustrated, in pain, cannot sit, and standing to type this right now. I called Hibners office, to ask their advice. They called me back and said ER doc called already and notified them. He will not be able to help with that i do whatever my family doc advises...like it's no big deal...Whatever. So here i am, I will try to start addressing that tomorrow. Don't know where to go, I guess i will have to find one. Isn't that what they are supposed to do. My doc said Trumbull Hospital doesn't have a colorectal surgeon. So why did he send me there. So now i have to find one on my own. Whatever. I'm done. I'm hurting , I'm humiliated, and i'm frustrated. Should have went to a vet, because i'm sure they would not let their dog suffer like this. Whatever. I'm done.
Re: My recent evaluation with Dr. Hibner
It's me again, forgot to add i still have a cytoscele, a rectocele, a peritoneocele, and now rectal prolapse, and per Hibner, have pudendal neuralgia, and possibly entrapment still. Oh, and i did not mention, don't know how, just noticed as i was reading over it, Hibner also cut my left inguinal nerve, and cut my genito-femoral nerve. He said i still had a lot of issues that cannot all be addressed during one surgery. Trying to be hopeful, i know it doesn't sound like it, but i am trying. need to change my diaper and go lay down. Sorry, i just don't have anything positive to say right now, but will share it if things turn around.
Aunt Netty
Aunt Netty
Re: My recent evaluation with Dr. Hibner
it's me one more time..just kick me off this site if i'm being irrational. Wanted to add, my 74 year old mother is trying to talk her husband into hitting the streets of youngstown to try to find me something for pain, as she can't stand to see me hurting this bad. Our luck, we would get arrested, so i told her no. Only drug addicts are prescribed pain medicine. I feel like i live in a third world country. Where is the mercy??? God help me please. Now i'm done
Re: My recent evaluation with Dr. Hibner
Hi Aunt Netty,
I am so sorry to hear of the hell you are going through. It is so sad that you have not been treated with dignity like you deserve. I wish I knew the magic advice to give. Right now, I think it is extremely important is to avoid becoming impacted again which means taking plenty of medications to keep your stool soft and moving through.
Have you been seen by a pain doctor yet? I don't know if opioids are the answer because of the constipation you are experiencing and because you can develop a tolerance to them. It's becoming increasingly difficult to get them because of the laws, and doctors being afraid of having their license taken away if they prescribe them. Are you using any non-opioids medications or natural remedies like alternating hot/cold sitz baths? When I was recovering from PN and thought I would go insane I used to alternate between hot and cold water sitz baths and they helped me survive. I described how I did this in another post. http://www.pudendalhope.info/forum/view ... =25&t=5267
I have not had Botox so I don't really know what to say about that except that it typically wears off over the course of a few months. Hopefully your initial incontinence will subside soon.
Don't worry, I don't think there is any likelihood of you being kicked off the forum. This is a place where you can vent and we understand. Many of us also have horror stories and understand what it is like to be at the end of having hope. So, do you have a follow-up visit with Dr. Hibner and has he told you the plan for treating your PNE? You might want to consider seeing someone closer to you like Dr. Ashley Gubbel in NY who trained under Dr. Hibner, since it is so hard for you to travel.
Saying some prayers for you -- for pain relief and so that you will know what to pursue next.
Hugs,
Violet
I am so sorry to hear of the hell you are going through. It is so sad that you have not been treated with dignity like you deserve. I wish I knew the magic advice to give. Right now, I think it is extremely important is to avoid becoming impacted again which means taking plenty of medications to keep your stool soft and moving through.
Have you been seen by a pain doctor yet? I don't know if opioids are the answer because of the constipation you are experiencing and because you can develop a tolerance to them. It's becoming increasingly difficult to get them because of the laws, and doctors being afraid of having their license taken away if they prescribe them. Are you using any non-opioids medications or natural remedies like alternating hot/cold sitz baths? When I was recovering from PN and thought I would go insane I used to alternate between hot and cold water sitz baths and they helped me survive. I described how I did this in another post. http://www.pudendalhope.info/forum/view ... =25&t=5267
I have not had Botox so I don't really know what to say about that except that it typically wears off over the course of a few months. Hopefully your initial incontinence will subside soon.
Don't worry, I don't think there is any likelihood of you being kicked off the forum. This is a place where you can vent and we understand. Many of us also have horror stories and understand what it is like to be at the end of having hope. So, do you have a follow-up visit with Dr. Hibner and has he told you the plan for treating your PNE? You might want to consider seeing someone closer to you like Dr. Ashley Gubbel in NY who trained under Dr. Hibner, since it is so hard for you to travel.
Saying some prayers for you -- for pain relief and so that you will know what to pursue next.
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: My recent evaluation with Dr. Hibner
Thank you Violet,
I need to keep my fingers shut sometimes. I do have a follow up with Dr. Hibner on June 5th, but i need to consult with a colo-rectal surgeon so that date may change. I am supposed to return to Pelvic Therapy but have to balance my mind to wearing diapers and right now i feel like i'm in too much pain. This monday will be two weeks. I realize my ranting is not really helpful and need to apologize to anyone out there who lost someone due to opiods. I am only talking about 5 mg oxycodone (perocet) every 6 to 8 hours to get me thru this post surgical pain. I know what your saying about adding to the constipation, which is fortunately, and unfortunately, not my current issue, but if i don't find a way to balance, could be my issue again in two days. But is taking 3200 mg of ibuprofen and 3000 mg of acetaminophen the answer?? They can cause constipation too and are not helping with my pain, i want to get better, not damage my liver, stomach, and kidneys. I am well aware there are people suffering with way worse pain than me and that keeps me grounded, kinda...but i am hurting. I have been using ice to my parts. The stool deliveries were so traumatic that everything ended up swollen tighter than ever. Could barely get enema in there when i needed to clear impaction. I am also using prep H. to try to reduce swelling. I just feel that drug addicts are ruining help for people who suffer in pain. i understand that they could be dangerous but i have had multiple surgeries and pain and never hit the streets looking for heroin. The doctors who were prescribing these people with all these drugs, and i know a few people myself, must have known they were not taking all of that medication, or they would have been dead within a month. Don't mean to sound insensitive as i really am not. But i feel i am old enough and responsible enough to weigh the risks and benefits and take my chances if they at least bring me some relief. Thank you Violet for reading and responding, makes me feel like i have friends who know what i'm going thru.
Need to get better and me and my husband will probably not make it too long. He doesn't want to hear anything medical, but that is my reality. He wouldn't even take me to emergency room or go to Phoenix with me, but found out he was taking vacation when i was gone. I'm laying in the bathroom floor screaming in pain bloody and crappy and he is calling me names. It hurts my heart, but i have more important things to deal with. If your not gonna help me, get out of my way. I believe he has been cheating on me with his secretary at work again, but whatever. I don't think i care anymore. I discovered he took two prescriptions of cialis and we certainly were not having sex. I don't have the energy to go thru divorce right now, but i better summon it from somewhere. Thank God for my wonderful children and family. How's that for a tmi??
I need to stop my pity party and be an active participant in my recovery. I did not go all the way to Phoenix and go thru this torture and humiliation to give up. That being said, There is a Dr. Steven Wiley listed on here in Wheeling, WV as a colorectal surgeon who treats PN. Still pretty far for me, but done with chop shop surgery..Not that i want him to treat my PN, as it is involved with other pelvic issues he cannot treat, but would be nice to have colo-rectal surgeon who is PN aware. Any word or advise on him? or anybody else? I will be hitting google here, but that isn't really advice, i feel like it's just eny, meenie, miney, mo in my google decision making.
I need to keep my fingers shut sometimes. I do have a follow up with Dr. Hibner on June 5th, but i need to consult with a colo-rectal surgeon so that date may change. I am supposed to return to Pelvic Therapy but have to balance my mind to wearing diapers and right now i feel like i'm in too much pain. This monday will be two weeks. I realize my ranting is not really helpful and need to apologize to anyone out there who lost someone due to opiods. I am only talking about 5 mg oxycodone (perocet) every 6 to 8 hours to get me thru this post surgical pain. I know what your saying about adding to the constipation, which is fortunately, and unfortunately, not my current issue, but if i don't find a way to balance, could be my issue again in two days. But is taking 3200 mg of ibuprofen and 3000 mg of acetaminophen the answer?? They can cause constipation too and are not helping with my pain, i want to get better, not damage my liver, stomach, and kidneys. I am well aware there are people suffering with way worse pain than me and that keeps me grounded, kinda...but i am hurting. I have been using ice to my parts. The stool deliveries were so traumatic that everything ended up swollen tighter than ever. Could barely get enema in there when i needed to clear impaction. I am also using prep H. to try to reduce swelling. I just feel that drug addicts are ruining help for people who suffer in pain. i understand that they could be dangerous but i have had multiple surgeries and pain and never hit the streets looking for heroin. The doctors who were prescribing these people with all these drugs, and i know a few people myself, must have known they were not taking all of that medication, or they would have been dead within a month. Don't mean to sound insensitive as i really am not. But i feel i am old enough and responsible enough to weigh the risks and benefits and take my chances if they at least bring me some relief. Thank you Violet for reading and responding, makes me feel like i have friends who know what i'm going thru.
Need to get better and me and my husband will probably not make it too long. He doesn't want to hear anything medical, but that is my reality. He wouldn't even take me to emergency room or go to Phoenix with me, but found out he was taking vacation when i was gone. I'm laying in the bathroom floor screaming in pain bloody and crappy and he is calling me names. It hurts my heart, but i have more important things to deal with. If your not gonna help me, get out of my way. I believe he has been cheating on me with his secretary at work again, but whatever. I don't think i care anymore. I discovered he took two prescriptions of cialis and we certainly were not having sex. I don't have the energy to go thru divorce right now, but i better summon it from somewhere. Thank God for my wonderful children and family. How's that for a tmi??
I need to stop my pity party and be an active participant in my recovery. I did not go all the way to Phoenix and go thru this torture and humiliation to give up. That being said, There is a Dr. Steven Wiley listed on here in Wheeling, WV as a colorectal surgeon who treats PN. Still pretty far for me, but done with chop shop surgery..Not that i want him to treat my PN, as it is involved with other pelvic issues he cannot treat, but would be nice to have colo-rectal surgeon who is PN aware. Any word or advise on him? or anybody else? I will be hitting google here, but that isn't really advice, i feel like it's just eny, meenie, miney, mo in my google decision making.
Re: My recent evaluation with Dr. Hibner
Violet,
It's me again. In my ranting, again (sorry). i did not answer your question. I still have not found any pain management who accepts pelvic pain patients..not from lack of trying. Yes, I think... Dr. Hibner has a plan b, but cannot address all issues at one time. Not doing great right now, but thankful to have him try to help me.
Like i mentioned, their advice(Hibners office) is to follow up as advised by family doc with colo-rectal surgeon, as he cannot help me with rectal prolapse and apparently multiple angry hemorrhoids. I had hemorrhoid surgery with follow up emergency surgery due to bleeding in 2010. Didn't even know i still had hemorrhoids but apparently i do. They sound funny, but are no laughing matter....
It's me again. In my ranting, again (sorry). i did not answer your question. I still have not found any pain management who accepts pelvic pain patients..not from lack of trying. Yes, I think... Dr. Hibner has a plan b, but cannot address all issues at one time. Not doing great right now, but thankful to have him try to help me.
Like i mentioned, their advice(Hibners office) is to follow up as advised by family doc with colo-rectal surgeon, as he cannot help me with rectal prolapse and apparently multiple angry hemorrhoids. I had hemorrhoid surgery with follow up emergency surgery due to bleeding in 2010. Didn't even know i still had hemorrhoids but apparently i do. They sound funny, but are no laughing matter....