Leviator ani syndrome or pudendal neuralgia or just Coccydy?
Leviator ani syndrome or pudendal neuralgia or just Coccydy?
Hi all my story with suffering from doctors is very long. I will post it in detail in hope it can help people to avoid what I have gone through by the hands of doctors which worsened my symptoms.It’s a long story so I will post it in another topic. For now I have been diagnosed by one doctor with levator ani syndrome which caused coccyx pain, sacral pain (this was my my first symptom) and irritated the prudential nerve and was prescribed valinil ( which helped sooo much with reducing the hip pain) and another doctor diagonised me with PN and will start nerve injection tomorrow and he said if it didn’t help we will have to do decompression surgery, and the ortho docks wants to just remove my coccyx since they can’t find something wrong. I have now rectal pain, premium, around the vagins, horrible hip pain, occasional sacral and lower back pain. Nothing wrong in the spine X-ray, spine mri, or blood tests, no auto immune disease. I have a constant feeling of something inside my rectum like a very small ball made of razors, I can’t sit at all only on toilet seat. Have almost zero symptoms upon waking up then it comes after seconds. Have no bm frequency or incontence only pain. I have bm every 2-3 days but I have always been like this. It all started after gym excercise. I did pnlt which showe 2.6 left and 2.5-2.6 right. Even though all of the hip spasm is mostly on the right side. The neuro dr who took the test said I am within the normal range on the other hand the surgeon said it is high and we will start with nerve injection then if it didn’t work we will do the surgery. In my country we pay out of pocket for everything. So I am kinda of afraid they will get me into surgery just for business. Also those are the 2doctors in my country who know about pn. Also the pnlt produced no pain at all from both sides. However the rectal exams showed sever tenderness at six o’clock, upward towards the coccyx and the back. Makes me wonder if this area has the prudential nerve in it because they only do right and left. And if not why do I have this horrible pain. However Currently i have no coccyx pain when palaptated from outside. And I think this is where the leviator ani is located. But if so then the nerve compression is due to the muscle tightness and then the surgery will be useless. Am I no longer know what to do and I can’t blindly trust doctors after what they did to me ( will post my story) and because they all want me to go under the knife to make money. And I can’t seek treatment abroad until I know my diagnoses which will determine what doctors to visit and in what countries.
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
The PNMLT might show if there is a motor problem with the nerve but it's not a 100% accurate diagnosis especially if your problems are primarily sensory rather than motor. Also, it may not show what the root cause is even if you do have pudendal neuralgia. For instance if you have some musculoskeletal anomalies with pelvic misalignment or SI joint dysfunction with ligaments impinging on the nerve the PNMLT wouldn't diagnose that. If you just have pain in the coccygeal area with rectal pain it's possible just the inferior rectal branch of the pudendal nerve is affected. You might want to ask about whether a ganglion impar block would be good to try if you are just having rectal area pain.
Violet
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: Leviator ani syndrome or pudendal neuralgia or just Cocc
Thanks alooot violet for your reply 
I have also hip burning pain. After doing the coccyx manipulation pain spread down to the right side of the vagina and I also had horrible premium pain but with rest ( I am bed rest and I don’t sit at all) the pain gradually reduced and sensitivity reduced. Before I couldn’t even wear pants because of the hip burning pain. Now I can to some degree ( pijama wise pants only and not all the time). Valinil helped so much in reducing the spasm. Maybe it is all from valinil, even the feeling of ball became a less painful ( no razors anymore), I still can’t sit or the burning hip pain returns. I also didn’t have lower hip pain before the manipulation. However I am off valinil now because they refuse to sell it to me even with prescription from dr in fear of being an addict 
my pain hip pain is returning because of the spasm other muscle relaxants armrest useless. I will ask for ganglion nerve block, I hope they know of it. Also pt strength excercise made me sooo much worse.
Thanks a lot violet
I have also hip burning pain. After doing the coccyx manipulation pain spread down to the right side of the vagina and I also had horrible premium pain but with rest ( I am bed rest and I don’t sit at all) the pain gradually reduced and sensitivity reduced. Before I couldn’t even wear pants because of the hip burning pain. Now I can to some degree ( pijama wise pants only and not all the time). Valinil helped so much in reducing the spasm. Maybe it is all from valinil, even the feeling of ball became a less painful ( no razors anymore), I still can’t sit or the burning hip pain returns. I also didn’t have lower hip pain before the manipulation. However I am off valinil now because they refuse to sell it to me even with prescription from dr in fear of being an addict my pain hip pain is returning because of the spasm other muscle relaxants armrest useless. I will ask for ganglion nerve block, I hope they know of it. Also pt strength excercise made me sooo much worse. Thanks a lot violet
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
Since you have hip pain, you might want to do an advanced search in the upper right corner about femoral acetabular impingement searching on Lernica's posts. She is no longer on the forum but it is worth reading her posts.
Violet
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: Leviator ani syndrome or pudendal neuralgia or just Cocc
Thanks a lot violet for responding.
My mri and ct hip scans were clear and except for mild coccygeal scoliotic to the left side. Also multiple bony islands of left iliac bone and left sacral ala ( researched them but they shouldn’t cause pain). Also my pain is starting to spread down my right thight. I am also suspecting underlying muscular problem (even though cr and mri are clear) I am suspecting a small tear causing scar tissue since all started after excercise or pelvic floor dysfuction or leviator ani. However I can’t find a pelvic floor therapist in Cairo who can rule out pelvic floor dysfuction. My surgical dr is going to inject my nerve after 2 days with nerve block ( I am scared after reading some stuff about nerve blocks). Also when the dr was performing inter-rectal pnlt I had no pain on the left or the right sides. The previous rectal exams produced sever pain on the upper side (6oclock on the side of the coccyx. From what I read this is performis muscle but am not sure. I also have very mild-to no pain when my coccyx is palaptated from the outside. I feel so lost and don’t want to do useless surgeries or shots that will further worsen my symptoms (like before). Doctors said I have sit bone pain because I am extremely thin, but I doubt that since the pain seems to be predominant in one side lol
Thanks a lot violet,
Lelej
My mri and ct hip scans were clear and except for mild coccygeal scoliotic to the left side. Also multiple bony islands of left iliac bone and left sacral ala ( researched them but they shouldn’t cause pain). Also my pain is starting to spread down my right thight. I am also suspecting underlying muscular problem (even though cr and mri are clear) I am suspecting a small tear causing scar tissue since all started after excercise or pelvic floor dysfuction or leviator ani. However I can’t find a pelvic floor therapist in Cairo who can rule out pelvic floor dysfuction. My surgical dr is going to inject my nerve after 2 days with nerve block ( I am scared after reading some stuff about nerve blocks). Also when the dr was performing inter-rectal pnlt I had no pain on the left or the right sides. The previous rectal exams produced sever pain on the upper side (6oclock on the side of the coccyx. From what I read this is performis muscle but am not sure. I also have very mild-to no pain when my coccyx is palaptated from the outside. I feel so lost and don’t want to do useless surgeries or shots that will further worsen my symptoms (like before). Doctors said I have sit bone pain because I am extremely thin, but I doubt that since the pain seems to be predominant in one side lol
Thanks a lot violet,
Lelej
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
I have gone with the nerve blocks since I had no other choice. The dr said my sacral nerve inflammation ( when left untreated for more than 2 moths because of wrong medications) the only things that seemed to work was nasid screams ( but was prescriped late unfortunately. This led to sciatic nerve and pudendal nerve inflammation)The blocks were done from the glutes area (with no guidance) he is very used to do it that way. However there was no palaptation, he placed the injection then when i start to feel no pain he finishes. There is no steroid included (said a combination of 4 different components). Felt no needle pain after injection on the left side, however I felt needle pain on the right side ( he said I should feel no pain now) but I guess the medication was far away. I could actually sit after the injection.There is no worsening of my symptoms ( other than the needle pain) I am scared he pinched a nerve but I think if it was a pinched nerve it would have hurt much more). Pain returned after a couple of hours. I was told I should go back for another round of blocks after 2 days. I very rarely experience sacral pain now, but intermittent lower back pain. I will go back on using the topical nasid for the lower back and hip pain ( since they seemed to work prior to the coccyx manipulation), however there were useless for pudendal pain also warm sitz paths and oral Valium were quite helpful ( rectal Valium was useless)
The names of the gels are feldene 0.5% diclac 05 gel- they took a couple of weeks before to work. Will use them again and hope they work for my sciatica. ( since He said we will treat it later, he wanted to start first with treating the pudendal nerve He said I will have to go a series of blocks to get perminant relief. He seems uptight about saying the ingredients of the block ( since he said I am the only one in the world who use this injections and this technique, and said he has done thousands of PN surgeries) Which makes me even more scared. If they have any lasting effect I will tell you guys. I have seen cured PN patients by him so I am willing to try as long as it doesn’t make me get worse. I have noticed pudendal pain improvement a couple of weeks ago ( with occasional flare up) so it makes me wonder if it is Valium or just because of time and I have changed my sleeping position ( I was bed ridden the majority of the time sleeping on my side with a pillow between my bending knees. Since I started sleeping and lying on my back hip pain on the left side decreased a lot (very minimal intermittent pain now). The right side is still painful. So it makes me wonder wither this position tightness the muscles around the sciatic nerve or stretch it and this cause nerve pain and whether a simple life-style change can reverse it back and leave a room for the nerves to heal. I hope this informations can help someone with similar symptoms
The names of the gels are feldene 0.5% diclac 05 gel- they took a couple of weeks before to work. Will use them again and hope they work for my sciatica. ( since He said we will treat it later, he wanted to start first with treating the pudendal nerve He said I will have to go a series of blocks to get perminant relief. He seems uptight about saying the ingredients of the block ( since he said I am the only one in the world who use this injections and this technique, and said he has done thousands of PN surgeries) Which makes me even more scared. If they have any lasting effect I will tell you guys. I have seen cured PN patients by him so I am willing to try as long as it doesn’t make me get worse. I have noticed pudendal pain improvement a couple of weeks ago ( with occasional flare up) so it makes me wonder if it is Valium or just because of time and I have changed my sleeping position ( I was bed ridden the majority of the time sleeping on my side with a pillow between my bending knees. Since I started sleeping and lying on my back hip pain on the left side decreased a lot (very minimal intermittent pain now). The right side is still painful. So it makes me wonder wither this position tightness the muscles around the sciatic nerve or stretch it and this cause nerve pain and whether a simple life-style change can reverse it back and leave a room for the nerves to heal. I hope this informations can help someone with similar symptoms
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
Hi Lelej,
This doctor gave you an injection that relieved your pn pain for a few hours? You said he had no imagining, so did he try to target the pudendal nerve just by sight and touch? And he said he'll give you a series of these? Will the other ones have steroids? If not, it's not clear why he would want to give you a series of them. He said he'd done thousands of pudendal surgeries? decompression surgeries? What is his name?
I also found relief from sitz baths, but that's so inconvenient that I'm now using a heating pad. Ice may also be helpful to you. Have you seen a physical therapist?
April
This doctor gave you an injection that relieved your pn pain for a few hours? You said he had no imagining, so did he try to target the pudendal nerve just by sight and touch? And he said he'll give you a series of these? Will the other ones have steroids? If not, it's not clear why he would want to give you a series of them. He said he'd done thousands of pudendal surgeries? decompression surgeries? What is his name?
I also found relief from sitz baths, but that's so inconvenient that I'm now using a heating pad. Ice may also be helpful to you. Have you seen a physical therapist?
April
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
Hi April,
I hope you are recovering well from your surgery, he did by sight, gave the impression that he knows exactly where the nerve is without papltation neither enternally nor externally. They gave relief for only a couple of hours ( but not complete relief). I still feel the injection pins. I feel pin (new pain when the prenium is pressured. His name is Ismail shafik son of professor Ahmed Shafik. The whole procedure took him less than a minute ( it was more like a routine thing rather than specified for each patient). The last thing he told me to stop being bed ridden and sit while tilting on the hip ( I have sciatica pain) and enjoy my life before it become mental. As if I can!! I also read a lot that I should avoid sitting- not learn to endure the pain ( because it will only get worse if I irritate the nerve. I suspect that he uses Dr. Shafik’s technique in surgeries which is hit or miss. He also doesn’t discuss much of what he is actually doing ( like the kind of nerve block) I still fell the needle pain after a day ( but I guess that’s normal). I have sent email to Dr. Hibner with all documents. Unfortunately dr ismail is the only dr who know PN in Egypt. I gave the Potter protocol to one ( Alfa scan) 3t Tesla radiologist and I was almost begging the dr but she refused saying they work only with already installed protocols, this is still a research, they never heared of PN so they considered it research and it is not under demand. Doctors can be very cold I even offered to pay any extra fees and that she would be helping me and many others in the future. I offered to pay any extra fees but still they said it is to advanced for us we only do what we know. Gave it to dr Ismai shafik but he said it is useless research. Emailed the only other 3t mri center in the country but they never replied. I will try to go and bleed to them maybe they will agree. I can’t imagine someone denying free new technology that can help people! I will contact Dr. Hibner’s office. I thought I would continue dr ismail’s course of injections until I can visit Dr Hibner.
However am more reluctant to continue taking the blind injections every couple of days ( since it will Add to the risk of injuring the nerve) I am considering finding a good pain management who can give me stronger meds until I can travel ( however most neurons surgeon I visited told me to stop taking any medication except panadol because I am young! So I should just suffer in silence! And because they have no idea how PN can be painful.
Thank you April a lot, you guys really made a difference with me I feel am not fighting this alone.
Thanks for your kindness
I hope you are recovering well from your surgery
, he did by sight, gave the impression that he knows exactly where the nerve is without papltation neither enternally nor externally. They gave relief for only a couple of hours ( but not complete relief). I still feel the injection pins. I feel pin (new pain when the prenium is pressured. His name is Ismail shafik son of professor Ahmed Shafik. The whole procedure took him less than a minute ( it was more like a routine thing rather than specified for each patient). The last thing he told me to stop being bed ridden and sit while tilting on the hip ( I have sciatica pain) and enjoy my life before it become mental. As if I can!! I also read a lot that I should avoid sitting- not learn to endure the pain ( because it will only get worse if I irritate the nerve. I suspect that he uses Dr. Shafik’s technique in surgeries which is hit or miss. He also doesn’t discuss much of what he is actually doing ( like the kind of nerve block) I still fell the needle pain after a day ( but I guess that’s normal). I have sent email to Dr. Hibner with all documents. Unfortunately dr ismail is the only dr who know PN in Egypt. I gave the Potter protocol to one ( Alfa scan) 3t Tesla radiologist and I was almost begging the dr but she refused saying they work only with already installed protocols, this is still a research, they never heared of PN so they considered it research and it is not under demand. Doctors can be very cold I even offered to pay any extra fees and that she would be helping me and many others in the future. I offered to pay any extra fees but still they said it is to advanced for us we only do what we know. Gave it to dr Ismai shafik but he said it is useless research. Emailed the only other 3t mri center in the country but they never replied. I will try to go and bleed to them maybe they will agree. I can’t imagine someone denying free new technology that can help people! I will contact Dr. Hibner’s office. I thought I would continue dr ismail’s course of injections until I can visit Dr Hibner. However am more reluctant to continue taking the blind injections every couple of days ( since it will Add to the risk of injuring the nerve) I am considering finding a good pain management who can give me stronger meds until I can travel ( however most neurons surgeon I visited told me to stop taking any medication except panadol because I am young! So I should just suffer in silence! And because they have no idea how PN can be painful.
Thank you April a lot, you guys really made a difference with me I feel am not fighting this alone.
Thanks for your kindness
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
How frustrating. Do you think the fact that the Potter protocol was in English presented a problem for the MRI place?
If the injections give you only short term relief and are not designed to help in the diagnosis of your problem, it is hard to understand why he wants to continue giving them to you. And he isn't explaining what he's doing either. Do you know the medication he injected? In the U.S., all the doctors put together a brief summary of their appointments with patients, and we can access those records. We sometimes have to pick them up in person or sign something, but we can get them. Could you access your records in that way? I have accessed almost all of mine (I have a massive binder and electronic copies of MRIs, etc.).
I am also confused by the concern about giving you medication because you are young. I have worked to keep my medications low, but I could not have survived without some medications. Does ice and/or heat help? I've been using a heating pad on my pelvic floor as much as possible since my surgery, and it is working great. My panniculitis is gone! And I'm hoping that the heat promotes healing. I still use ice a few hours each day (when I walk around the house), but heat is the main non-drug pain relief mechanism.
That's great that you sent Hibner's office your health history. I think that's a good place to start. His office has two surgeons and a new doctor who is in physical medicine and rehabilitation (she's not a surgeon), so it seems like that office has a lot of treatment options. And you think you could travel to the U.S. for a visit to his office? I would definitely want to have a phone consult (or two) with him or one of the other doctors before making such a big trip.
April
If the injections give you only short term relief and are not designed to help in the diagnosis of your problem, it is hard to understand why he wants to continue giving them to you. And he isn't explaining what he's doing either. Do you know the medication he injected? In the U.S., all the doctors put together a brief summary of their appointments with patients, and we can access those records. We sometimes have to pick them up in person or sign something, but we can get them. Could you access your records in that way? I have accessed almost all of mine (I have a massive binder and electronic copies of MRIs, etc.).
I am also confused by the concern about giving you medication because you are young. I have worked to keep my medications low, but I could not have survived without some medications. Does ice and/or heat help? I've been using a heating pad on my pelvic floor as much as possible since my surgery, and it is working great. My panniculitis is gone! And I'm hoping that the heat promotes healing. I still use ice a few hours each day (when I walk around the house), but heat is the main non-drug pain relief mechanism.
That's great that you sent Hibner's office your health history. I think that's a good place to start. His office has two surgeons and a new doctor who is in physical medicine and rehabilitation (she's not a surgeon), so it seems like that office has a lot of treatment options. And you think you could travel to the U.S. for a visit to his office? I would definitely want to have a phone consult (or two) with him or one of the other doctors before making such a big trip.
April
Re: Leviator ani syndrome or pudendal neuralgia or just Cocc
Hi April, happy new year it’s great to know you are doing well. Unfortunately we have no access to records of drs describing the conditions but we have all the scan mris, radiology reports, since we pay for everything we don’t have insurance system like in the US.. When i called st Joseph hospital, the guy was very nice and caring but when I was directed to dignity health. The secretary refused completely to let me have a phone consultation (like it is out of question). She told me the dr usually don’t look at the email so u have to fax all the reports from all doctors that you visited abd send the scans. After that we will review your case and unless you sent everything it won’t be looked at. After that we will see if we will accept your case or not. Then we will contact you ( if they accept my case) with a pudendal questionare.
I am currently collecting the records from doctors. Visiting each one of them and ask for a report (for the injections and coccyx procedure). I hope the dr agree to give me a report about the ingredient of the block.
Good news is (misr scan) accepted to look at the protocol after a phone call and said they will take two days to study it before the mri. I am going tomorrow to give it to them thank you April Also I am opting for surgery maybe that’s why they are very careful in their decission (dr Hibner’s office). I have no other option since I can’t get stronger pain killers, no physical therapy knows about PN here and I can’t keep on taking those blind injections. I take couple of hot paths a day they give temporary relief. I take pregdin apex 100, cymbalta 60 and serquil 25 to sleep, and Valium. I am not even sure I will be able to get more Valium because it is a prescription drug. Drs told me to even stop those meds but I ignored them ( they don’t remove pain but only take the edge out of it.
I am considering France too in case dr Hipner refused my case. However I can’t seem to be able to reach any one by email. After dr roger’s retirement I don’t know who does the operation and by what technique, does they do TG, I have no idea how to contact the Nantes team and my French is close to zero lol
Thanks a lot April,
Lelej
it’s great to know you are doing well. Unfortunately we have no access to records of drs describing the conditions but we have all the scan mris, radiology reports, since we pay for everything we don’t have insurance system like in the US.. When i called st Joseph hospital, the guy was very nice and caring but when I was directed to dignity health. The secretary refused completely to let me have a phone consultation (like it is out of question). She told me the dr usually don’t look at the email so u have to fax all the reports from all doctors that you visited abd send the scans. After that we will review your case and unless you sent everything it won’t be looked at. After that we will see if we will accept your case or not. Then we will contact you ( if they accept my case) with a pudendal questionare. I am currently collecting the records from doctors. Visiting each one of them and ask for a report (for the injections and coccyx procedure). I hope the dr agree to give me a report about the ingredient of the block.
Good news is (misr scan) accepted to look at the protocol after a phone call and said they will take two days to study it before the mri. I am going tomorrow to give it to them
thank you April Also I am opting for surgery maybe that’s why they are very careful in their decission (dr Hibner’s office). I have no other option since I can’t get stronger pain killers, no physical therapy knows about PN here and I can’t keep on taking those blind injections. I take couple of hot paths a day they give temporary relief. I take pregdin apex 100, cymbalta 60 and serquil 25 to sleep, and Valium. I am not even sure I will be able to get more Valium because it is a prescription drug. Drs told me to even stop those meds but I ignored them ( they don’t remove pain but only take the edge out of it.I am considering France too in case dr Hipner refused my case. However I can’t seem to be able to reach any one by email. After dr roger’s retirement I don’t know who does the operation and by what technique, does they do TG, I have no idea how to contact the Nantes team and my French is close to zero lol
Thanks a lot April,
Lelej