Hi folks does anyone have anal rectal pudental nerve irritation/pfd? And pain after bm?If so what treatments are you doing?
Pudental neuralgia inferior rectal n... - Pelvic Pain Suppo...
Pudental neuralgia inferior rectal nerve
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kalecolbe12
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Hi there! I have been having PN symptoms for a year now this month. Mine gets so much worse after bowel movement on my left side. It travels all the way to the vulva area. I am also feeling cold sensation and numbness throughout the pelvic area as well. I had a PN block down three days ago and I’m still taking Lyrica and Cymbalta. I feel like the medicine has calmed things down a little throughout the day at times but not enough.
I have had pn for 9 years---I got it from spinal surgery. The worst for me is rectal spasm and vaginal, burning & excruciating pain---on top of that my bowel is neurogenic from spinal surgery. I have to dis-impact in rectal pain, spasm, Have tried everything. I wrote a post at bottom of page. I can never sit, lay, and walking is agony. Just want to say my doctor got me 5% lidocaine cream otc---I smear it all over outside of rectal area, in crack of butt and even vaginal area, on anus---it numbs the area for a few hours. Its not much but I will take whatever I can get!
It might help you! I pray your sufferring is relieved and I pray for everyone on this site! God Bless! trishj46
Hi trishj i only can sit on my knees on a yoga bench with a swimmingboard on it carved in my but shape with a hole in it by the pn aria. It was a great releave to " sit " straight up also for my back and spine . You can surch for yoga bench on internet its worth to try. I sot that way at breakfadt lunch and diner even in a resraurant for the last years. First i was ashamed but now i go in public places with it it fits right between my back and my backpack when i go out
You poor thing. I have been suffering from this exact condition for the last 10 years I even had my coccyx removed thinking that they could stop the pain. Now I have even more pain. The pain is like a shooting knife going right into your rectum right into the anus part that causes a lot of spasming and pain in the surrounding muscles which then spasm and get very painful to the touch which they call a Nyla Vater syndrome but in this case is actually a symptom of the original problem which is damage to the inferior rectal nerve of the pudendal nerve. I have been searching year after year for some kind of help I still cannot sit down without tremendous pain and even lying on one side or another is painful. I have tried everything but there are so few drs who even know what pudendal nerve is thst it had been really hard!! Nothing REALLY worksb but lyrica, pain med and s muscle relaxer is all they have hor this......i pray every nihht that God will makr a miracle where someone can just freeze or numb that nerve!!! Good luck......all the best al
Dr prologo is doing cryoblation( freezing) of the nerve....I know he's in the USA but you'll have to Google him just put Dr prologo pudendal nerve cryoablation and it should pop up...they also do regular ablation ...both have mixed results just like Botox has mixed results just like Prudential nerve decompression surgery has mixed results ...I myself find that the cyclobenzaprine muscle relaxer helps me... A heating pad is what I sit on end I also just sent for a gel foam cushions for wheelchairs because my client has one and it really helps her spine....$20 on eBay or Amazon has them too for $ 25.99.. my PT works wonders and I do stretching and deep breathing and I walk a lot I'm a lot better than I used to be a year ago... Although I will get a pain flare sometimes after a bowel movement or stress ful events,I pretty much know how to cope
I have been in contact with Dr Prologo's office and sending over all my records at least from the past 3 years of 10 years of misery! That is only the first hurdle, Then comes being accepted for a 15 min phone cal,,,, and then how to get my DR's to convince medicaid to pay for the procedure!!!! I can tell you this. Anyone who suffers from this will do ANYTHING they have to!!!Thanks for the referral....Al
Oh how exciting please let me know how it goes and what you think I know some things work for some people and some don't work for others
I KNOW ONE THING FOR CERTAIN. PAIN MEDICATIONS KNOW MATTER HOW STRONG DO NOT WORK. THIS PROBLEM IS DIRECTLY CONNECTED TO THE BRAIN. THIS NERVE SENDS FLIGHT OR FLIGHT SIGNALS TO THE BRAIN CAUSING BAD ANXIETY AND PANIC. THEN TEH PERSON FEARS THIS FEELING WHICH INCREASES THE STRESS AND MAKES THE PAIN WORSE IN ONE BIG CIRCLE OF PAIN! ALPRAZOLAM, VALIUM, LYRICA, CYMBALTA OR LEXAPRO FOR THE MENTAL PARTOF THE PAIN..... I CAN SAVE SO MANY PEOPLE SO MUCH PAIN AND TIME BY LETTING THEM KNOW THE FACT ABOVE,,,, I KNOW EVERYONE IS DIFFERENT, SO THIS IS WHAT WORKS AT LEAST A LITTLE TIO KEEP ME ALIVE... NOT EXAGGERATING! THE PAIN IS WORSE THAN ANYTHING AND IT MUST BE ADDRESSED PHYSICALLY AND MENTALLY BOTH! UNFORTUNATELY MOST PAIN MANAGEMENT PLACES HAVE ZERO CLUE WHAT IS HAPPENING TO YOU AND WILL PUT YOU ON PERCOSET ETC,,, WHICH WILL DO NOTHING AND MAKE YOU EVEN MORE UPSET!!!!
I think you are right but the mind thing is difficult to master.
Meditations on YouTube might help also. This is a bear of a
disorder. Still working on it for 7 years now.
Hello I'm the one who told you about Dr Prologo doing the cryoablation and I was wondering if you got accepted and what your progress is ...i would like to keep track if you can private message me what's going on patiently because I'd like to see how it goes for you and see if I am a candidate at some point
Hello, my husband is experiencing very same symptoms as you. So sorry to hear of all of your pain on here. It is so hard to watch him suffering. Do you have trouble riding or driving or sitting in the car? He cannot sit, walk, ride, sit or drive car. He developed a fissure which has created more pain and spasm further down. But the pain was there further up as shooting pain and constant dull ache or sharp ache in his rectum prior to the fissure. How does that or those nerves get damaged? He hasn't had any surgeries there. He had rubber band ligation done for internal hemmroids 18 yrs ago and had a skin tag removed all of which was extremely painful and he got a fissure from the banding procedure then. Just wondering about all of this amd a solution. Thank God he has no organic disease, but I believe the spasm created all of this but don't know the cause of the spasm. God be with and praying for you all to be pain free. Bryce & Sara💒
Thank you so much for your letter. It truly is one of the most difficult things to deal with that you can imagine. I've done so much research on this hoping to find one little hope for a cure. Well I keep reading his stuff like this is the number one disease that people commit suicide from. After suffering for at least 9 to 10 years of this I can actually see why that's true. The fact that my living is made from playing piano really makes it difficult mentally and physically for me. As soon as I sit down the pain immediately is overwhelming and it's almost like putting an ice cube into a tooth cavity! They call it all kinds of different things ani levator syndrome, pudendal neuralgia. all kinds of different things but the truth is it's just the most painful haunting thing there is. I read a post by someone on here that says someone around the country is doing cryoablation of the nerves specifically the inferior rectal nerve which is the one that really is causing all the problem. It is just ridiculous to think that in this day and age that no one can help. I have had to resort to doing some of the most horrible things ever just to survive. Just to drive to a doctor's appointment or to try to play a piano show I have to put a bottle underneath each butt cheeks to keep the area where my coccyx was from hitting the seat Jerry is even this only lasts for a few minutes before the pain gets bad. Sometimes I have to sleep with my leg up on top of the headboard. It's just unbelievable. And then there's the mental aspect of this horrible disease that just keeps telling your brain that it's not worth it to go through all this pain and live like this. It's a constant message sent to the brain from those nerves telling you to pack it in your life is over. You have to fight it with every ounce of your being! Thank you so much for the letter because at least I have someone else that is going through what I am and I can pray for them. Let's make sure we continue to pray for each other because as the Lord said Whenever two or more are gathered together for prayer I will act. God is the maker of Miracles and boy do we need a miracle. If we both keep praying maybe we will get one. But everyday I shall still keep looking for one person who can help me somehow some way. Thank you so much God bless and feel free to write back anytime! Al
Thank you Al so much for your reply, we will pray for you for a miracle amd thank you for your prayers as well. Do you know the name or state the doc is doing this procedure? Thank you & God Bless.
I'm searching all over..
I will go anywhere do anything pay what i dont have to get rid of this....lets search together constantly..i am in ct
Branford ct....praying someone jn this state knows enough to do this.....stay in touch...al
Hello Everyone,
It has been quite some time that I have been on here, my husband Bryce was suffering from a fissure for 2 months, and Praise be to God it healed! So grateful to God for that. He was still in pain and having spasms up furter in his rectum so he had his internal hemmoroids treated with Infared Heat Coagulation which the procedure is painless but the scope was a 15mm and since his internal schinter was still tight, it tore another fissure in another area. He became suicidal from the terrible and persistent pain and I kept searching online for other answers. Thankful to God for this forum and for all of you sharing your experiences and healings. From these forums I decided to call a Pelvic floor PT and she told me about the book Headache in the Pelvis by Dr. Anderson & Dr. Wise. I ordered the book and read some of it and discovered that probably a lot of my husbands pain was coming from more muscle/nerve related pain along with the anxiety/depression/insomnia he was suffering from the pain. It becomes a viscious cycle. I decided to try to call Dr. Wise since his number was in the book. To my surprise he answered the phone and he is such a great person and doctor to talk to on the phone. He said he could not advise us since he is not our doctor but he told us what he normally recommends to his patients.
1. 1% Nefidipine ointment in a neutral base (no lidocaine - can be irritating to the tissue) and diltizem can be irritating to the tissue. Apply a toothpaste size amount 3x a day if possible with finger but if not with applicator
2. Hot baths which we all know relaxes the muscle by 1/3 (3 x day)
3. Ketamine Infusions for pain
I immediately searched for ketamine places and found one in our area - Pittsburgh Ketamine in White Oak, PA, Dr. Macler. They were able to get Bryce in within a week, and we were so thankful to God to have hope again. We truly believe that God intervened and put these people in our paths, and we thank God for the chemicals that he gave people the wisdom of making and helping people. We believe it all comes from God, and Jesus Christ His Son, Our Lord & Saviour.
After the very first 4 hour ketamine infusion treatment on March 6, 2020 Bryce went from not even being able to ride in vehicle laying down without tremendous pain to driving the same vehicle the very next day. He still had some post bowel movement pain, and spasm high in the rectum, so the doctor prescribed his .1 mg clonidine for protagia flugax 2 x day and oral sublingual ketamine 20 mg 2 x day. He was also already on valium 5 mg 2x day for anxiety and to help relax the muscles. And another doctor prescribed doxepin 25 mg before bed for sleep. This really helped him with sleep after about 1 week, the valium helped with the anxiety. The same type of pain even with an active fissure. Because Bryce had active fissure pain prior to the first ketamine infusion and the next day that pain was gone. Praise be to God, Glory to God! We give God all the Glory! Bryce had another infusion 5 days later with even more improvement as ketamine also helps with depression/anxiety and suicical thoughts. Then he had another 6 days later and had 95% improvement. He had a relapse of pain and high rectal spasm 3 days later and was not able to get another infusion due to the corona virus, the one in Pittsburgh shut down. The relapse lasted a few days and he did have improvement each day but still was having some post bowel movement pain and pain throughout the day with activities. So I talked to a ketamine place in Clevland Ohio and she told me they could not get the ketamine in right away due to the virus so she suggested to call a neurologist so I did. He prescribed gabapentin 300 mg 1 x day before bed and increasing to 600 mg and then if needed 900 mg. Bryce started the gabapentin 300 mg 7 days ago and Praise be to God and we give God all the Glory he has had improvement with post bowel movement pain! Also he is using the 1% nefidipine ointment 3 x day, and 2 other ointments prescribed were the first one all of these: 6% gabapentin, 5% ketamine, 3% amitrypiline, 2% tetracaine. and the other is 3% amitrypiline. These all help with both tissue and nerve/neuropathical pain. Just wanted to pass along what has with the God's healing touch helped Bryce. He is now taking 5 mg valium usually just 1 x day, 300 mg gabapentin night + 150 mg gabapentin morning, .1 mg clonidine 1 x day, 2 - GNC Tri-Sleep product at night, 20-40 mg ketamine sublingual per day.
Pray that God will bless you all and bring all His Angels down to touch each and every one of you suffereing and please pass this on to everyone. God be with you all, with Love in the name of Our Lord & Saviour Jesus Christ,
Bryce & Sara
I'M SO HAPPY FOR BOTH OF YOU..... I HOWEVER AM STILL SEARCHING FOR MY MIRACLE,,,,THEY DON'T UNDERSTAND THAT PAIN MEDICINE DOES NOT WORK FOR THIS STUFF! IT IS A MUSCLE NERVE BRAIN SYNDROME.... I AM SO DEPRESSED,,,, I HAVE BEEN A PROFESSIONAL PIANIST FOR 50 YEARS AND HAVE NOT BEEN ABLE TO SUT FOR 9 YEARS,,,,, TODAY TRIED TO STAND STRAIGHT UP AND PLAY KEYBOARDS BUT AFTER ABOUT AN HOUR THE PAIN STARTED AGAIN SO BAD I HAD TO STOP ,,,TAKE MEDS....ICE ON ANUS AND ICE ON SACRUM,,,,,TOOK 45 MIN TO BE OUT OF UNBEARABLE PAIN,,,,,, I HAD AN APPT ON APRIL 15 TO GO TO NH AND SEE THE BEST DR CONWAY AND NOW IT'S CRUSHED!!!! NO MOTIVATION AT ALL FOR ANYTHING,,,CRYING,,,,YELLED AT BY THE WIFE WHO DOESN'Y UNDERSTAND,,,,I CAN'T TAKE MUCH MORE!
This is BryceSara had to change usernames because the brycesara would not work! I messaged you under oldglory as well. If you want to email or call or text us and the info we gave you in the message you are welcome too...
Hello Al, Piano Guy
I could not reply so hopefully this goes through...
I am so very sorry for your pain and we both understand what you are going through. Are you in Connecticut? We are praying for you and thinking of you. I will help you search for a ketamine place if you let me know the area that you live in. Also, what meds are you on? Have you tried gabapentin? The one person with ketamine told us to talk to a neurologist and that doc prescribed Bryce gabapentin right away. It was a virtual call due to the virus, and maybe even this doctor would talk to you via virtual call since you are experiencing the same symptoms as Bryce and perhaps with God's grace the gabapentin could really help you. If there is anyway to get to a ketamine place, there is one in Clevland Ohio (not the clevland clinic) that is currently open even though the virus is going on especially to people that are in pain and suicidal. Please try the ketamine and gabapentin, I believe through God's grace it could really help you. The depression like Bryce had, and anxiety only contributes to the cycle. Do you want to try to talk to Dr. Wise in California? He is so helpful and encouraging and its free to talk to him. Maybe the 1% nifedipine would help you also if your sphcinter muscle is tight like Bryce's. I can get you Dr. Wise's phone number if you are interested? Also, Valium and/or Klonipin might help you for anxiety and its a muscle relaxer. Clonidine is for blood pressure, but it helps with Protagia Flugax, if you are having spasms. What type of doctor is Dr Conway? I can also send you a copy of the book Headache in the Pelvis. If you want to contact us directly, you can call us at seven two four, five seven zero, four three four nine or email us at brycesararinkhoff at gmail.com. We would be more than happy to speak to you on the phone or mail you information, or email you information or help you find a ketamine place/neurologist. I really believe through God's intervention that God intervened to meet all these people and now we want to help others through God's blessings and grace to help others. Really believe that these things can help you and they are non-invasive. A lot of docs want to just do surgery or something but God intervened in our life to bring us compassionate, loving, caring doctors that listen and do their own research to help because all of them except Dr. Wise never heard of or treated anyone with Bryce's condition. Just thanking God for everything and for His intervention in our life and just want to help you if you want us to. God Bless and God Be With You, please hold on and hang in there, you can and will get better. Dr. Wise will tell you that too, and give you hope. With Love, in the Name of Our Lord & Savior Jesus Christ,
Bryce & Sara
You are amazing people. I can't even tell you how much your lighter means to me. Not even my wife understands so I'm all alone in here. I am currently on Lyrica like Gabapentin I am also on cnx which is much like Valium. I am on something called Hydromorphone which is a pain killer but it does not work very well. They recently put me on something called belbuca which also is a painkiller I have no idea what it's doing. They just don't understand that painkillers are not the way out of this! There are times when I guess want to pack it in it's really horrible to have something that hasn't been cured in 10 years it makes you think that you'll live with it for the rest of your life and it's all because no one understands I had to have my tailbone removed in 2013 after multiple multiple surgeries Steven implanted a spinal stimulator which didn't work. As a professional pianist for my whole life they took it away from me I can't sit down and I can barely stand for an hour straight in the same position but I was doing it performing at many different retirement homes casinos hotel resorts and then they grounded me and I have lost so much money. No one understand the plight of the sole proprietor for the self-employed person. I have to make money because the amount I get for disability doesn't even cover my rent never mind another thousand dollars worth of bills and medications I have to get on my own your letter actually made you cry because I felt like someone understood the pain I'm going through thank you so much for reaching out to me and I will definitely be back in touch with you soon maybe even hear my voice on the phone. It'd be so great to talk to someone else who understand may God be with you and your husband
Dear Al, God Bless You, you are an amazing person as well to see your strength and courage through your suffering. I'm glad we met each other through this site and I'm sorry you don't have an understanding wife. It's very difficult to even find a doc that knows or understands but Dr Wise does and Bryce does and I did my very best to understand. You are welcome Al please call text or email anytime. We are self employed as well so we understand its difficult. I'm sorry your meds are so expensive too. Can you get Medicaid? We got that and got accepted as our insurance.
Can you rife in a vehicle laying down? Does it cause you pain? That was Bryce's most challenge as far as getting to docs because the car rides were so painful even laying down. We bought an older conversion van and he would lay on couch cushions on the floor while I drove. After the 1st ketamine infusion by God's Grace he could drive the van. It took him until after the 3rd one though to be able to sit longer and we give all the Glory to God. How long have you been on lyrica? Wonder if gabapentin would help more? Really believe the ketamine with God's grace would help you. Thank you for your blessing and God Bless You.
Call Dr. Hibner at St. Joseph's Hospital in Phoenix, AZ. He treats people worldwide
for pelvic/pudendal, etc disorders. Sorry don't have the telephone number but look on the internet to find him. The office specializes in Pelvic pain. Give it a try!!
Thank you will do. God Bless
I called but they only treat females. Thank you so very much for your help, God Bless
Did they ever suggest a sphincterotomy for Bryce?
Yes they did but we were on another forum and lots of people had spincteronomys and after they still had the same pain and ended up in pelvic floor PT but still in pain. I just posted on that forum about the ketamine & gabapentin as well. How are you? God Bless & God be with you. Bryce & Sara
I am on gabapentin now and it is really helping,!! I have an appt with a neurologist....and I already read a headache in the pelvis and emailed Dr wise a few months ago...it all helps as well as 8 months of pelvic floor pt.......my prayer is we will all get better....I definately am getting better .....waaaay better than 6 months ago....I will look into the catching meeting and also I still have some diltiazem from when the doctor gave it to me a while back ..it helped a little....also doing the curable app for meditation calming down the whole nervous system which is important
Yes Praying to God everyone gets better as well. You could try 1% nefedipine as well. What app are you trying? God Bless!
Hi! How are you doing now? What has helped you?
Believe me I know how debilitating it is I was in the emergency room twice with it but anyway I forgot to say that I ordered a gel memory foam cushion that people use in wheelchairs and it's super helpful... It's eBay or Amazon it's called the Nova gel cushion
• in reply topianoguy
Hello
Thank you for sharing your experience on this very helpful website.
I'm in the UK and am only one month in with the pain from rectal pudendal neuralgia or whatever it is they want to call it.
I read your post with horrible sadness but also great personal interest. My heart and prayers go out to you and all those suffering in a similar way. It's really hard to believe in this day and age with all the advances in medicine, that this condition is barely recognised. My own GP surgery had to look up what pudendal nerve is!
Tips from postings about cushioned and medications are really helpful. Like everyone, I am searching for a miracle and believe very strongly in the power of prayer. Please would you count me in with your prayer circle? My own church is praying for me and I believe is helping to guide me on a path to take. This week I am traveling to see Dr Greenslade in Bristol who is first point of contact for pudendal nerve team. I believe God has guided me to him.
In the meantime, I am having acupuncture and it is helping to control the pain. It's traditional Chinese acupuncture rather than trigger point so no needles at site of problem.
I'm also taking MSM - a natural anti inflammatory.
You are obviously a very gifted person - a wonderful pianist who brings joy to so many people. I pray you find the strength to always continue.
Even a few days in, my pain was so bad, I really felt I couldn't go on. I can indeed understand the high suicide rate. This feels like a helpless situation, especially with such pain in dark nights. Very bleak.
I pray for you pain to ease and for a cure for us all.
God bless you and keep you.
Korin
trishj46• in reply to
I just want to throw this out there. I have had PN for 9 years and there is nothing I have not done--nothing! I also have separate pain from spinal cord surgery which left me with neurogenic bladder and bowel. I self-cath & dis-impact with my main pn nerve rectally. I have neuropathy every where--seldom feel feet or legs or have nerve pain every where. I am homebound now!
My biggest and worst pn is burning pain rectally & vaginally non-stop -----driving me to insanity. My doctor says "no more options".
Great being told I am hopeless! Anyway I could go on & on but wantb to know if you have heard of "benfotiamine"? it is a supplement of B1 thiamine----not a b1 you just buy in store. You need to google and read everything about it and nerve pain. You can buy otc after research. I am experimenting with it right now with 150mg twice a day---stopped rectal & vaginal burning! It is erratic and confusing right now for me to work out dosage & time wise. May be nothing--may be something. After every med it is first thing that stopped rectal burning nerve pain! Just a thought!
God Bless to all of us sufferring and going through hell!
trishj46
Thanks!!
• in reply totrishj46
Hello
I just wanted to thank you for your posting.
I'm in a similar situation to you.
Have just ordered some!
Thank you so much
Korin
trishj46• in reply to
try to get "Doctors Best" benfotiamine 150mg---different formulas out there. Good Luck!
trishj46
Huntress just checking to see if the benfotiamine is still helping you?
kalecolbe12• in reply to
Hey, I'm just checking to see if thr benfotiàmine has helped you?
Yes, it does help! Its not a miracle but it has cut the edge off
of certain pn areas. You have to decide the best dosage. I started with 150mg but now takeing 150mg three times a day.
Good Luck!
Can you take it with prescription medications like gabapentin or cyclobenzaprine?
I only know I take it with gabepentin---don't know about other drug.
• in reply tokalecolbe12
I think it might have some effect.
Had chat with GP yesterday as not doing well on pain meds. Side effects have been intolerable.
Now just on valium to relax muscles and zopiclone short term to make sure get some sleep. Just measures to see me through the lockdown until can get some more physical therapy etc.
Got an online consultation with a pain specialist tonight re possiblity of Botox or nerve block or whatever. See what he says.
Have you heard of Tracy Sher? Apparently an amazing Pelvic Physio in the US. Gets amazing reviews.
How are you doing?
Korin x
pianoguy• in reply to
Hi Korin.... I am so sorry to hear your story. I have no idea how I have survived this long with this disease. Also you are so right. I would go into Dr offices and they would actually get mad at me for having this! it's all in your head. I never even heard of a pudendal nerve let alone an inferior rectal nerve!,,,sickening! I of course will pray for you and everyone here suffering. No One knows how bad the pain is!! here are some suggestions..... Believe it or not Benzodiazopines like Xanax and valium are FAR more effective than PAIN meds!!! LYRICA for sure and then try to get on Cymbalta believe me...it helps 2 ways.... It helps the brutal things this disease does to your mental sanity and it also helps the nerve medications work better..... If anyone knows it's me!!!! I have been everywhere and tried everything!!! I'M TRYING TO GET IN WITH A DR POLOGO BUT HE IS ALL THE WAY IN ATLANTA GEORGIA.... I'LL GO TO THE MOON TO GET RID OF THIS!!
Did you find gabapentin an/or muscle relaxers helped? I don't remember you mentionint those
No....the muscle relaxers mad my mouth very dry but they don't work in the same way as benzos which also attack the pain signals to the brain. I do take lyrica which is another form of gabapentin a little stronger.
Do you take valium or xanax by mouth or suppository??
Thanks God Bless
BY MOUTH FOR NOW,,,,,,, NEW INFO COMING,,, MAYBE BREAKTHROUGH SAY A PRAYER!!!!
Yep please let us know what the breakthrough is!!
Can you let me know about the breakthrough and if you get in with Dr prologo also if you get the cryoablation how it works thank you you can p.m. me too
• in reply topianoguy
Just checking in and wondering how you are doing in the lockdown?
I wholeheartedly agree with you about valium! Only thing that is helping me.
Korin in UK x
What do you mean by the benzos? What drug class is that?
Xanax. Valium.....nerves
So it will take about 6 or 7 months of pelvic floor physical therapy once a week and this really will help they just loosen everything up and all the muscles around the nerve so it looks the nerve flow freerer they do pudendal nerve glides and sacral mobilization.... Oh so you have to be on not pain meds but a muscle relaxer plus something like gabapentin,Lyrica,cymbalta,or Amitryptiline,which is a neurological med and I promise these help a lot ...I also put some lidocaine in there... You can actually get a prescription for a compounded suppositories with lidocaine and baclofen to put in there which help also ....the PT will give you stretches and breathing exercises to do and although it doesn't seem like it would help believe me it does...... Yes I did read about product optipro logo who does the cryoablation of the nerve if you just Google him and pudendal nerve it'll come up and a lot of people get botox ,ablation ,cryoablation, nerve blocks all with varying different results.... As for me I've had it over a year and I am definitely have better days now but I haven't done any of these procedures I've just been doing regular powder for physical therapy and of course meditation breathing stretching muscle relaxer and gabapentin if I need it taking your nervous system lay down with meditation is very helpful it's a bit of a time commitment because you have to do at least half an hour in the morning a half an hour at night of just completely meditating but it's worth it...stay in touch and I can let you know how i go on with what I'm doing and we can exchange ideas and support for each other
Absolutely.... It's a very lonely problem.. Great to have a friend who knows!
God bless,,Praying for you.. Al
Hello to both of you, praying for you both and I found that Dr website, Dr progolo. Looks like he's in NH and MA too. You're in CT, how far would you be from his offices? I am in PA.
Hope you can find relief with this therapy. Are you currently doing Pelvic Floor Therapy Al? My husband just started. Since he can't ride in the car we found one that does virtual calls. Praying that helps.
God Bless you both & thank you for replies. Bryce & Sara
Virtual calls??how does that work?...get him the nova gel wheelchair cushion...it helps a lot of people
Will definitely look into that gel pad. Thank you. We use Google hangouts app and she can see us and we can see her. It's so helpful and so grateful to have a PT willing to do this as we are 2 hours from her and other PTs that deal with men we are at least 1 hour. That's just too far he cannot go in car more than a few miles laying down and I have to drive about 5 mph on our back roads and 15-20 mph on bigger road but he still gets such pain with car ride. I will look into the gel cushion. Check your PT and see if they will do virtual...
Oh I can sit now after a year I have a cushion in my car and I'm doing fine with that as long as I don't have to drive more than 45 minutes and my PT is only 20 minutes away so I'm good.... I also have a miniature portable heating pad that I put inside of two pairs of underwear if I need it and I have heating pads all over my house lol...funny I've had the flu for the last two days and I've had no pain at all and I wonder if it's because my mind was on something else... It does make you wonder about the mind body connection
Thank you so much...been through about 5 rounds of pt...not much help for me but everyone is diff...there is a huge brain to rectal nerve connection which immediately invokes you fight or flight response....cymbalta and xanax or valium are all that helps even a little!!!
Thank you too so much Al, since they made valium a controlled substance it's hard to get prescribed. My husband had it prescribed to him 10 yrs ago and it worked. He hasn't been on it since, he always kept a little in the fridge for a slight flare, he gets fissures and would take when he got one. Didn't know it was a controlled substance and when he went to ask for valium again in 2019 they only prescribed one month. So he's been stretching that out when he has bad spasm. He was prescribed cymbalta but he thought it made him more anxious. Hasn't had Xanax but same problem as with valium. Now since he can't ride in the car we can't get him any meds currently. His CRS (colorectal surgeon) doesn't understand the pelvic floor stuff amd won't prescribe him valium or pain meds either. He asked for valium suppositories but the CRS wouldn't prescribe either. By 5 rounds of PT do you mean 5 weeks? He's only done 1 week so far. He's doing self anal dilation as well with pediatric anal dialators. He currently has at least one fissure and small (mild) internal hemmroids. He's not sure if the dilation is helping yet but it's supposed to relax the spchinter muscle and heal the fissure. He started with a 10 mm is at a 11 mm now. Also the doc has him on Diltizem 2%, Bethanechol .1%, ISDN .2% ointments. For anyone on this site not sure if these topicals would help you or not but ask your PCP if you want to try them. He was on Nefedipine .3% and nitroglycerin .2% ointment prior to the others. He uses them all though still. They do relax the spchinter muscle. They make nitro in a .4% ointment too might be more effective amd they make ISDN in up to a 1% ointment which I might see if the CRS would prescribe 1% ISDN for him. I guess next the doc will talk to him about botox to the sphincter muscle if fissure does not heal. Please pray for him about his fissure healing. God can do all things. Praying for you Al. That has to heal first before we can even try to get the pelvic floor botox or any other treatment that may help with this. It seems like he has most underlying symtoms of levantor ani and proctagial flugax. But it's hard to know for sure. Thank you all, Sara
As I said I have been going to around eight months of PT now and I had a completely pain-free week last week then I had a good friend pass away I had to drive an hour each way to the hospice and I got a pain flare up.. but am sure it was emotional too .but after I had my pt she did extra mobilization and pudental nerve glides and I feel way better.... As I said I've had the flu the last 2 days and I haven't hardly had any pain at all probably taking my mind off it has helped.... Doctors don't know much about it one of my doctors ( colorectal)had me ready to get surgery to do an l a s sphincterotomy and I just walked out it didn't feel right to me but it takes a lot of patience and a lot of time to get this condition under control... My PT said that after all this time doing PT 20 years she's had two doctors come and watch what she does which just shows there how ignorant they are...she said our system is archaic and completely ignorant where pelvic floor dysfunction and pudendal nerve are concerned...now that I'm getting better I'm going to go around to all the doctors that didn't know what I had and tell them what's going on I feel like they should get educated
I have had many fissures and used creams you mentioned. At one point it did not work----fissure bigger then my doctor ever saw. I had surgery, they cut the muscle to leave room for it to heal.
Turned out great!! Good Luck! Prayers!
Did you try ketamine? Check my post above...
NO, never did!
If you're still in pain you might want to give it a try. Ketamine infusions. With God's grace and healing it helped Bryce. We give God all the glory!
I am so happy for Bryce! I was not allowed to get ketamine--I wish I could. I have numerous problems that preventing using it!
I will thank God he came out ok! God is good!
Yes God is Good, Amazing and all powerful & Almighty Father in Heaven! So sorry you couldn't get the ketamine, is it because of seizures? Praying for you. God Bless.
Yes, seizures and other things too! Once again have a Happy Easter! say a prayer for me! HUGS!
I found cyclobenzaprine which is a muscle relaxer to be a lot of help and I have Xanax if I need it and also my pain doc gave me gabapentin which I haven't used just in case I need it....
I wanted to ask you when you say you've been through five rounds of PT what do you mean by rounds how many times altogether have you been? Were they different PT's or the same one and what did they do? did they do mobilization and pudendal nerve glides?
Thank you Kalecobe12, for your replies. He was prescribed cyclobenzaprine & baclofen too but they didn't help either. He still has the prescriptions in case. Did the cyclobenzaprine work the first day or did it take weeks? What and how do they do prudential nerve glides? And mobilization? The problem is if it's rectally he can't do anything with the fissure. What state are you in? Im sorry to hear of your suffering, whats your first name so I can ask your name in prayer instead of your username? The docs in the past and now have mentioned lateral spcinteronomy to my husband as well due to the fissures but they do not understand the underlying cause. Good for you to educate them and once we get a handle on this I think I will do the same. Im just wondering if botox to the pelvic floor would make more sense than botox to the sphincter muscle? Because he has an underlying 3-4 pain everyday after BM and had that or more before the fissure. His fissure seemed to heal a few times but he had that underlying pain still. Tried explaining that to doc too but they don't understand. There's a doc in NJ that does fissure procedure without cutting and they specialize in pelvic floor, we might have to get there somehow but we are 7+ hours from therem.
It took about a week of taking cyclobenzaprine and then all of a sudden my pain just stopped it was really crazy and I took it for 4 months 3 times a day and then it pretty much subsided except if I got stressed it would flare and sometimes with a bowel movement it with flair and still does occasionally but I'll take a cyclobenzaprine and then it's good sometimes for a week so it's just a matter of slowly getting better I think of course we all have different levels of it although I will say mine was at a 12 on a scale from 1 to 10 I was screaming with pain up every night my family didn't know what to do with me and I knew a friend of mine that pelvic floor physical therapy would help me so I asked the colorectal surgeon to refer me...they'll talk about biofeedback but that's just a meter that's not a therapy and my pelvic floor physical therapist said that it's archaic and amongst the pelvic floor physical therapy group of therapists do their thing because doctors don't understand it......doctors should be checking to see what goes on here not just referring you and not blindly knowing what goes on....she told me that doctors are just afraid of the pelvic floor has so many nerves and muscles that can go wrong.... It's like the chicken or the egg what came first sometimes a fissure causes it sometimes it causes a fissure we just really don't know.... I do know that we have to have patience of jobe to be able to go through the treatments and come out the other end but it can be done I believe.... I would say get him that gel cushion maybe if he responds well to heat get in the little heating pad it's on eBay it's just a little portable heating pad I'm trying to think if the name but it works for me and it attaches to a USB charger so you can stick it all in your underwear pretty well hidden....I forgot to say another thing I did was I created my own local chronic pain group inviting people with chronic pain illnesses and their families and we started with two of us and now there's seven of us and we meet once every two weeks and it really helps we started it on nextdoor.com for our neighborhood so we don't have to drive very far..... Thank you for praying for me and my name is Audrey Thompson.... I am originally from the UK came here when I was 27 in 1981 but my family still lives there so I visit two times a year... I live in Arizona...I still work a couple of days a week but my clients all know my situation so they are very patient....thankyou
Thank you for your reply Audrey. I will try the gel cushion and yes heat helps, sometimes ice. If you think of the name of the heating pad let me know. And what is the exact name of the gel cushion you have? As far as the cyclobenzaprine, was yours 5 mg or 10 mg 3x a day? Did it cause constipation in you or diarrhea or any other side effects? I'll check into your neighborhood site, thank you! Sara
Yes it was 5mg and will cause constipation so my pt had me take a stool softener every day and a little fiber....I didn't care about a little constipation because I was just glad to be out of pain but it actually worked really well to stop the constipation....of course we have to drink a lot of water to stay hydrated is huge.... I will get back to you with the name of the gel cushion I think it's a a Nova gel on Amazon or ebay about $25.... I will see if I can find the heating pad name
Thank you. What type of stool softner did you take for it and what mg? What type of fiber and how much? My husband's BM are a soft serve like consistency now to try to heal the fissure but don't want it to get harder. He's taking magnesium and benefiber and probiotics, vitamins, cod liver oil, olive oil, EFA oil, a small amount of Miramax. Thank you for the names of the items. You are most helpful! I was reading about fissures on this forum by searching fissure and saw you wrote in a few times on those posts, did you or do you have a fissure? Thank you! God Bless
Have you tried gabapentin that works for me but I haven't tried the cymbalta yet
I had a lot of benefit for my pn from my overactive bladder treatment cald ptns you can surch a trail up ( pelvic pain ptns )
hi pianoguy.
i am a male. 57 years old.
i have had exactly the symptoms you are describing.
i use to describe it as "broken glass in the rectum".
i have had it for 30 years, and have wrongly been diagnosed as a paranoid schizofrenic!! ??
i have been examined for several urological diseases.
3 years ago. after years of fighting doctors and the whole medical system i met a leading urologist who got interested in my case.
he decided, as an experiment to operate a pace-maker into my lower back.
actually he put small metal thread in my spinal cord in the sacral bone.
and the pace-maker was inserted under the skin on the top of my left buttock. i have a constant flow of electrical power in my abdomen, it doesnt feel uncomfortable.
the operation went extremely well.
and after a while the pain inside my body started to fade out.
i have severe spasms to, and it is somehow as if the spasms is loosening up the muscles etc i my rectum. after a year, or so the PAIN IN MY RECTUM STARTED TO DISAPPEAR.
so now there is almost not any pain inside.......
when i look back at the pain i had before the operation it is unbelievable that i was able to to do anything at all.
i still have severe pain in perineum and legs. and are still trying to find out how solve these problems
god luck.
H.
so I guess you got an interstim put in I think that's what it's called and it works for quite a few people and not for others but I'm so glad it worked for you
By the way I'm just curious did the doctor ever say what he thought it was causing the pain and why he put the interestsim in there ?did he suspect pudendal nerve issues or what did he say and what kind of doctor was he if you don't mind me asking?
hi kalecolbe 12
thats fine. thank you for the questions.
the pudendus was first introduced to me by an urological physiotherapist.
the doctor is an urological chief surgeon,
he did not have any idea of what it was when i introduced him to the pudendus issue.
he told me that the interstim was used primarily for patient with incontinence,
and he was willing due to my history and “amount of pain” etc to give it a try.
so here in Denmark it is considered en experimental treatment.
apparently there is no doctors in denmark who know anything about it.
so he just hoped that it would give a good result.
i found out that there are doctors in france, holland plus some other places who know about the disease and that it is a very new area in urology.
just some 10 years ago the held their first worldwide congress
H.
There are so few doctors who know about this and the first person who has helped me the most was my physical therapist for the pelvic floor....
I forgot to ask did you have a colonoscopy MRI and CT scan just curious and did you try any other treatments like nerve block or Botox? I'm in the USA and there's a lot more knowledge here thsn the rest of the world about the pudendal nerve...I am originally from the UK and it's getting more well-known there now too and of course in France
i had mri and ct scans and ultra sound.
no nerve blocks or botox or colonoscopy.
i find it scary that a problem that big and devastating is unknown to doctors and that heavy psychiatric diagnosis is used in an attempt to shut us down.
i have promised myself that when i regain some of the strength i had earlier i will stand up for this.
and now the urologists in denmark are interested and willing to listen and learn.
I had PNE of this nerve.
No doctor cared or would help me.
I fought for my life; I don’t get depressed.
I couldn’t tolerate medication management. I had severe side effects.
I also lost my sanity from being wrongly diagnosed with vulvodynia and a mental condition.
I did all the work to find doctors who could help me. My local doctors neglected me, over-medicated me and left me to suffer torture and near death.
It appears a mere five-ten doctors globally care about healing this intractable and life threatening nerve compression pain.
I’m shocked that a neuropathy which affects many people ( as noticed on PN blogs ) has not obtained a Standardized
Procedure. Medications are toxic when taken long term.
My surgery saved my life.
Incredible most drs dont even know what pudendal nerve is !!!!!! Sickening
It’s ridiculous. They must have studied it at school,?
A neurologist or neurosurgeon should know!
I have gotten so much better with all my work so that I feel like mine is pelvic floor dysfunction with pudendal nerve irritation because I can make it better and that's what my pelvic floor physical therapist thinks to where is I think a lot of people like you have an entrapped nerve and the surgery is the only solution
Hello Everyone,
It has been quite some time that I have been on here, my husband Bryce was suffering from a fissure for 2 months, and Praise be to God it healed! So grateful to God for that. He was still in pain and having spasms up furter in his rectum so he had his internal hemmoroids treated with Infared Heat Coagulation which the procedure is painless but the scope was a 15mm and since his internal schinter was still tight, it tore another fissure in another area. He became suicidal from the terrible and persistent pain and I kept searching online for other answers. Thankful to God for this forum and for all of you sharing your experiences and healings. From these forums I decided to call a Pelvic floor PT and she told me about the book Headache in the Pelvis by Dr. Anderson & Dr. Wise. I ordered the book and read some of it and discovered that probably a lot of my husbands pain was coming from more muscle/nerve related pain along with the anxiety/depression/insomnia he was suffering from the pain. It becomes a viscious cycle. I decided to try to call Dr. Wise since his number was in the book. To my surprise he answered the phone and he is such a great person and doctor to talk to on the phone. He said he could not advise us since he is not our doctor but he told us what he normally recommends to his patients.
1. 1% Nefidipine ointment in a neutral base (no lidocaine - can be irritating to the tissue) and diltizem can be irritating to the tissue. Apply a toothpaste size amount 3x a day if possible with finger but if not with applicator
2. Hot baths which we all know relaxes the muscle by 1/3 (3 x day)
3. Ketamine Infusions for pain
I immediately searched for ketamine places and found one in our area - Pittsburgh Ketamine in White Oak, PA, Dr. Macler. They were able to get Bryce in within a week, and we were so thankful to God to have hope again. We truly believe that God intervened and put these people in our paths, and we thank God for the chemicals that he gave people the wisdom of making and helping people. We believe it all comes from God, and Jesus Christ His Son, Our Lord & Saviour.
After the very first 4 hour ketamine infusion treatment on March 6, 2020 Bryce went from not even being able to ride in vehicle laying down without tremendous pain to driving the same vehicle the very next day. He still had some post bowel movement pain, and spasm high in the rectum, so the doctor prescribed his .1 mg clonidine for protagia flugax 2 x day and oral sublingual ketamine 20 mg 2 x day. He was also already on valium 5 mg 2x day for anxiety and to help relax the muscles. And another doctor prescribed doxepin 25 mg before bed for sleep. This really helped him with sleep after about 1 week, the valium helped with the anxiety. The same type of pain even with an active fissure. Because Bryce had active fissure pain prior to the first ketamine infusion and the next day that pain was gone. Praise be to God, Glory to God! We give God all the Glory! Bryce had another infusion 5 days later with even more improvement as ketamine also helps with depression/anxiety and suicical thoughts. Then he had another 6 days later and had 95% improvement. He had a relapse of pain and high rectal spasm 3 days later and was not able to get another infusion due to the corona virus, the one in Pittsburgh shut down. The relapse lasted a few days and he did have improvement each day but still was having some post bowel movement pain and pain throughout the day with activities. So I talked to a ketamine place in Clevland Ohio and she told me they could not get the ketamine in right away due to the virus so she suggested to call a neurologist so I did. He prescribed gabapentin 300 mg 1 x day before bed and increasing to 600 mg and then if needed 900 mg. Bryce started the gabapentin 300 mg 7 days ago and Praise be to God and we give God all the Glory he has had improvement with post bowel movement pain! Also he is using the 1% nefidipine ointment 3 x day, and 2 other ointments prescribed were the first one all of these: 6% gabapentin, 5% ketamine, 3% amitrypiline, 2% tetracaine. and the other is 3% amitrypiline. These all help with both tissue and nerve/neuropathical pain. Just wanted to pass along what has with the God's healing touch helped Bryce. He is now taking 5 mg valium usually just 1 x day, 300 mg gabapentin night + 150 mg gabapentin morning, .1 mg clonidine 1 x day, 2 - GNC Tri-Sleep product at night, 20-40 mg ketamine sublingual per day.
Pray that God will bless you all and bring all His Angels down to touch each and every one of you suffereing and please pass this on to everyone. God be with you all, with Love in the name of Our Lord & Saviour Jesus Christ,
Bryce & Sara
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