Doctors in midwest?

Are there any good physicians in the Midwest that do testing for Pudental Neuralgia, or Genitofemoral nerve pain. I think this is what I have. My pain started with a UTI, then BV, the BV came with a right sided pinching pain when my right foot would walk along. The pinching has gone, and now I am left with burning in the urethra/clitoris area. Anybody who has suggestions on who to see to get a diagnosis? I have had Ultrasound and MRI which looked find. My URogynecologist said my skin was atrophying (age 51 and perimenopause) I have been on Premarin since September and she said my skin looks great now. I still have the burning pain. Please give me any suggestions, I am from Iowa, but would travel about anywhere to find answers since this is taking my life away right now. Currently starting Gabepentin and Amitriptyline.

51 Replies

  • There's Dr Hibner in Arizona for females with pudendal nerve entrapment. If you are male you should see Dr Conway in NH. You could ask for a ganglion of impar also block to rule out your tailbone as a source of pain.

  • Dr Usitalo in Chelsea, Michigan. He's a urologist but he was the one who finally diagnosed my vulvodynia in 2005. Also Dr Reed in Chelsea, Michigan as well. She specializes in chronic vulvar pain/vulvodynia.

  • Wow! Someone from Iowa like me! I am sorry for your pain and frustration over not being able to find a doctor in our area that deals with PN. I have been dealing with pelvic pain after falling from my bike in July of 2014 and was recently diagnosed with PN, thanks to a very good PT and a referral to an excellent OBGYN in Cedar Rapids. Since he had never treated anyone with PN, he tried to find a doctor at Mayo or one of the surrounding states that dealt with the pudendal nerve and came up empty handed. He did a series of three pudendal trigger point/blocks which helped to diagnose it; but unfortunately I only got about 20% improvement, which the further out from the injections the more the pain is increasing once again. Recently online I found a Dr Ken Peters in Michigan at the Beaumont Women's Urology Center who specializes in women's pelvic health (248) 898-0898. I have not contacted him yet as my OBGYN is going to try a trial period of the Medtronic Inter-Stim implant next week. I also tried Gabepentin and Nortriptyline, but had to discontinue because of side effects. I hope this information proves helpful to you and wish you well.

  • Thank you for your reply. Who are you seeing in Cedar Rapids. So far nobody has even talked about trigger point blocks to diagnose.

  • My primary care doctor and PT suspected PN and they referred me to my pain doctor at Mercy Hospital in Cedar Rapids for a PN block. Unfortunately because it is a rare request, he no longer does them. So, I was referred to Dr Jason Rexroth who is an OBGYN in Cedar Rapids. My husband and I are very happy with his care. He was honest in telling us he had never treated someone with this condition, but as an OBGYN he is highly skilled in giving pudendal nerve blocks for pain control during chilcbirth. I did have total relief from all pain after each injection for about 12 hours, unfortunately the steroids did not have a long lasting, healing effect which is what we were hopeful for. From what I have read this is not an unusual result and the blocks are done more for a diagnostic purposes. On the positive side, that did confirm the diagnosis of PN so I didn't go through the years of not knowing and searching for a diagnosis that most women go through or insensitive caregivers who tell you it's in your head. He is very attentive and compassionate as well as his nurse. He comes highly recommended and is responsible for bringing robotic surgery to this area. He will be doing the trial Inter-Stim next week, which has not been FDA approved for pelvic pain yet, just incontinence, but there are a lot of women who have had it done elsewhere with good results. Its my understanding that the doctor in Michigan is the one who developed this procedure. I trust Dr Rexroth to do the implant, but he has also encouraged me to seek out a doctor that has experience in treating the condition. If I get atleast a 50% reduction in pain, our insurance company may pay for the permanent implant. I would be happy to let you know of my outcome if you would like. I have never posted on a blog before today and I can't tell you how encouraging it was to find someone in the area who is going through similar circumstances. Not that I would wish this dreadful condition on anyone, I just find it so difficult to talk to someone about it that hasn't experienced it. Please let me know if I can be of further help. I will pray for your healing as well as wisdom to know what your next step will be.

  • Yes, please let me know how it goes. I live in Newton and have been to Des Moines and Iowa City Pelvic Pain clinic with Dr. Mazur. She thinks it's nerve issue. I have right sided pelvic pain, which my Gyno thought was vaginal atrophy (I'm 51) and put me on premarin cream. She says my skin is fine. I've had ultrasound and MRI all showing nothing. My main pinching pain is gone, but I'm left with this burning senation now. Just wanting to know if this is PN or not.

  • I can truly empathize with you. The burning is so very painful. Even though I haven't gotten better since being diagnosed, it somehow has made it easier knowing there is a name for it and there are options for treating it. I had an MRI, cat-scan, and transvaginal ultrasound done quite early on as well all coming back fine, and although I didn't know it at the time, that is good to have those tests behind you as they need to be done to verify there isn't something else going on that explains your symptoms. Many times PN is made only after excluding all other possibilities for your symptoms. If you haven't found the pudendal hope website yet, I would encourage you to look at it. They have a lot of helpful information there as well as a physician and PT locator for the entire world. If you are like most people with PN, sitting and riding in a car can be excruciating and usually increases pain...I have tried many, many cushions and have yet to find one that works. So if you haven't seen a good pelvic PT, I would encourage you to try to find one located near you...i remember seeing one listed in Des Moines on the Pudendal Hope website. Other than the doctors that specialize in PN, pelvic PT's are quite knowledgeable about the condition...probably more so than most gp's. I haven't seen much improvement from going for pelvic PT, but it is my understanding that this is a long process and not to expect quick results. It takes a long time to learn how to relax the pelvic floor muscles. I will check in with you next week to see how you are doing and report how the trial implant went.

  • I live in the Quad Cities. I was diagnosed with phudendal neuralgia in the fall of 2013 by Dr. Mazur. She specializes in pelvic pain at the University of Iowa Hospital. My symptoms started after I had a hysterectomy in April, 2013.

    It has completely changed my life. I have daily pain. I have tried almost everything. I did physical therapy with a pelvic floor specialist. I have tried chiropractic care. I have gone to a pain psyscologist. I am currently a pain patient At the University of Iowa. I have had 4 nerve blocks. The first was for diagnostic purposes. The last 3 usually help for an hour than it takes 7-10 days for the steroid to kick in. It has been helpful and usually lasts up to 3 months. It has given me some relief and hope.

    I have learned to modify my life. I have learned certain things help. Water. Swimming and baths help. . This is a horrible condition. This is the first time I have posted. I was fortunate to find Dr. Mazur. She is kind and empathetic.i hope this post is helpful. I just found this group recently.

  • I forgot to add that I also take gabapentin and Baclofen daily. It has been a lifesaver. I take amitriptyline in the evening. I was unable to fall asleep at night due to pain. Hope this information helps.

    I have read that 1 in 100,000 have this condition. It is comforting to find others that understand.

  • Who did your nerve blocks in Iowa city. I am to see Mazur again next month? She never mentioned nerve blocks to me

  • I saw Dr. Elijah. He left in December so I now see Dr. Esther Benedetti at the Uof I pain clinic.

    Dr. Elijah would perform caudal nerve blocks. Dr. Benedetti recommended a ganglion impar block.

    I just had that done last Thursday. I am waiting for the steroid to kick in.

  • Once the steroid kicks in how long do you get relief?

  • Up to 3 months. I think the more steroids the longer. This time she gave me 40 mg. one time I had 80 mg and that lasted the longest. ( I waited 5 months )

    This last time it started to work the second day. My pain levels were very low. After I went to work after the 3 day weekend it went back up. So, waiting to see if it kicks in soon. Otherwise, I will call my doctor.

  • Thank you for sharing your experience and the information of where you have received treatment. I am sorry you suffer from this dreadful condition as well but so encouraged to hear that Dr Mazur in Iowa City was able to give you a diagnosis and that you are able to obtain some short-term relief from the injections and have found water exercises and a combination of drugs that are helpful. Can I ask how much experience Dr Mazur has with treating patients with PN? My doctor's nurse told me today he met a Dr Kevin Benson from Sioux Falls, SD, 605- 328-8750 (about a 5 hour drive from Cedar Rapids) this week at a conference who treats patients with pudendal neuralgia that he would like me to see. Iowa City certainly would be a lot closer though and it sounds like you had a very positive experience with her and the Iowa City pain clinic. Could I ask how long it took for you to get a diagnosis? I totally agree that the connection a person finds on this forum with others who understand is very comforting to know we are not alone. Thank you for giving me other options to consider for doctors. I wish you the best on your journey.

  • My OBGYN had referred her to me. I had my surgery in April 2013 and went to 3 OBGYN s. I had a vaginal ultrasound, catscan,MRI that gave little information. I went to an urologist. I went to a PT that specialized in pelvic floor. It was she that suggested that I might have Pudendal Neuralgia. I had some weak pelvic floor muscles too. I then went to Dr. Mazur in August 2013 and she diagnosed me with PN.

    I am interested in Dr. Benson. I have also thought of going to Mayo. I wasn't able to travel initially due to the pain. I empathize with you and am interested in anything that would help .

  • Thank you for the additional information. I will pass on any additional information I receive from my OBGYN pertaining to Dr Benson. My doctor tried finding someone at Mayo but was unable to. A Dr Antalok who studied under a doctor in France use to work there but retired in 2012. I find it hard to believe that there isn't anyone there who treats this condition, but since it is a rather rare condition I guess it's not surprising. Please let us know if your research should surface someone. Travel is definitely an issue for myself, that is why Dr Mazur might be a better option for me. May I ask if you are considering seeing another Dr because Dr Mazur doesn't feel like she can offer you anymore help? My doctor is wanting me to see someone with experience in this condition since I am his first patient with PN. I will post the results from the trial Inter-Stim next week. Again, thank you for the help.

  • Although Dr. Mazur has been helpful, I feel that I need to explore all options. I have tried so many things to make my life manageable. I would love to be pain free or even be at a 1-2 daily. I am tired of measuring my days by pain. Good luck with your procedure and please post your results.

  • I wanted to report back that the trial Inter-Stim procedure I had done over a week ago at the sacral nerve level failed. To make a long story short, when I got out of our SUV at home after the procedure I started getting electrical jolts rather than the gentle tapping, fluttering sensation that I had when I left the doctor's office. The doctors think the leads migrated when I made that movement. I spoke with the Medtronic rep over the phone who helped with the procedure several times during the 6 day trial, but was unsuccessful in getting it to work properly or get relief from pain. So, my doctor made an appointment with Dr Benson in Sioux Falls, SD on the 24th. He treats patients with PN so I am hopeful he will have a solution. I'm thankful I tried Inter-Stim as I would have always wondered if it would have been effective if I hadn't.

  • Thank you for your follow up. I am sorry it didn't work for you. Hopefully, your next doctor will be able to help.

  • Thank you...I'll probably post an update after my appointment in case it would proove helpful to someone else.

  • I was on another site and someone implied that there's also a Dr. Lynn Miller at Stillwater, MN that learned PN from Dr. Antolak who was at Mayo. I haven't looked into it, but thought I'd put it out there. I hope your appointment helps you. Let us know. Dr. Mazur in Iowa City definately isn't the one you want to see. She is compassionate, but out of her league with PN.

  • I googled Dr Miller and found she is a neurosurgeon, but no mention of her learning from Dr Antolak. If you find that's true, please let us know. I find it so odd that no one took over PN treatment when Dr Antolak retired. I keep reading that PN is rare, but there certainly are a lot of us searching for doctors who specialize in that area.

  • I live in Marshalltown and am looking for new ways to cope with this awful nerve pain, and to be able to talk with someone who has this. Dr Mazurka has mentioned the block, so am thinking of trying it. I also have just found this group. Just to be able to see the light at the end of the tunnel would help.

  • I live in Marshalltown and currently seeing Dr. Mazur and was wondering if you have had good results with her.

  • There are very few doctors who want to deal with Pudendal nerve issues. I am from South Dakota and had doctors contacting other doctors to see who would be the best to help me. There's no need to have surgery after surgery to try and fix this, and you want someone who has experience in this. I would highly suggest Dr. Hibner from Phoenix AZ. He did surgery on me in January and his staff is the best. He does many many of these surgeries on women. I have talked to several that got help from him. I had to fly to Phoenix twice to get help from him. But since you already had the nerve block done you may not have to go through that with him again. But I would listen to him. He has several patients that have had 100% healing. To early to tell with me yet but I am hopefully.

  • Have you had any relief? I have read the success rate is low.

    Did your insurance cover the surgery?

  • Can you tell me if most insurance companies cover the cost of surgery? I know it's much to early in your recovery to know for sure, but are you sensing that surgery was the answer for you? May I ask how your recovery is going?

  • Are you seeing improvement after your surgery? What were your pain symptoms?

  • Hi, I ama 51 year old woman from Wisconsin. My pain started about 2 years ago. I believe it was from over exercising, specifically kettle bells with repetitive squats. I've always exercised but this was a new addition to my routine. I was a very healthy person prior. I did have a complete hysterectomy at the age of 32 due to rumors and endometriosis, no complications from surgery ever.

    It started with sitting pain. I figured I just needed a new office chair. It then turned to burning in my rectum and urethral. Excruciating to say the least. I had no idea what was happening, unfortunately I continued to sit at work and continued exercising less the kettle bell program. At that time exercising or not exercising did not change the pain levels.

    I did months and months of pelvic floor PT and acupuncture. It all Felt good but never had any permanent "fix". I would recommend trying both as you do learn methods of relaxation and I do believe in the benefits of acupuncture. I also was prescribed 5mg of diazepam to insert vaginally twice a day, this helped.

    I went to a 2nd PT outside my insurance network. She internally manipulated my tailbone this also gave me relief. By this time my pelvic wall was "soft" due to diazepam and pelvic floor exercises. She felt my problem was more "mechanical". My pelvic alignment, tailbone. I went to her also because by this time I had lost my ability to have an orgasm which was heartbreakng. Orgasms have easily been achieved for me. In fact, throughout this time having an orgasms gave me relief from my pain for a few days so it was a double loss for me.

    I have had MRIs of pelvis, lumbar and emg and just recently MR neurogram. MRIs showed nothing MRN showed pudendal nerve abnormal and hyper intensive . I live about an hour and a half away from mayo in Rochester. My dr. Referred me there and they said they had no one that specialized in pudendal neuralgia and said I needed to go to a pain clinic.

    The MRN confirmed what I knew all along through my reading and research. I have sent all my imaging to Johns Hopkins for a 2nd radiology opinion. Just needing to know if their experts can see if the nerve is impinged or it there is damage to the nerve or is there something else going on causing that nerve to be irritated.

    I know there is no cure for pn but if there is something else causing the nerve to be irritated I want/need to know that.

    I take gabapentin and amatriptolyn In a cream form once a day at bedtime. I have decided to stay with my original pain management doctor as I feel I get good pain management and if I ever need anything she listens to my input. We have a great interventional radiologist who had his intership at Johns Hopkins if I ever decide to try a nerve block. This is the one procedure I have opted not to try. I worry about making my condition worse. My dr. Said she has not had that happen but feels the procedure is exactly as we all know for diagnostic purposes which I feel the MRN did for me.

    I also use lidocaine gel in the area the nerve runs between my labia and upper inner thigh. This has huge benefits and I highly recommend this.

    I am the type of person who was not going to go without trying everything and anything to fix this or find out what was wrong (with exception of pudendal nerve block) . I won't have my 2nd opinion from Johns Hopkins for a couple of weeks.

    I take it day by day. I feel cheated out of the best part of my life. My daughter is 29 and getting married in October and we had a great life prior. My relationship with my husband has obviously changed. He's great but it's amazing and sad what a lack of orgasm during sex does to a relationship. I deliberately have to hold back tears because who wants to have sex with someone who cries afterwards? He would totally understand but he too has lost out with this as well

    After my Johns Hopkins opinion comes back and depending on what it says I will quit the quest and continue on with my pain meds and possibly do some maintenance PT. This is probably going to be my new normal. I try to enjoy the good days and on bad days know that tomorrow COULD be better.

    I am thankful I can still continue to work and have the financial means for all the doctors and testing I have needed.

    Has anyone else lost the ability to have an orgasm? I cannot do any form of exercise now either. I do feel sorry for myself that not only am I in pain all day any type of pleasure has been taken as well. Sex and exercise. I feel entitled to a little self pity once in awhile.

    I could go on forever.....If anyone has any questions I am happy to answer.

    I wish you all peace and comfort.

  • I hope you get more answers from Johns Hopkins. I too have some sitting pain. I think it's my hamstrings around the ischial tuberosity. I haven't lost the ability to orgasm, however, don't do it because I flare the next day..... I am trying to stop for a few months to see if something settles down. I just called and made an appointment with Dr. Rhonda Kotarino, in Chicago who is an expert in the field of womens pelvic physical therapy and comes highly recommended. She and another colleague have been in this field for years and her daughter is also in their practice. I am hoping she can help me with this. She did talk to me yesterday and from my symptoms think I have some kind of trigger point in the urogenital diaphragm. I hope she's right, but time will tell. I, too, was an extremely active person who would do intensive workouts and run. My whole family is active so it kills me when they are "getting fit" and I am just walking around slowly. I feel extremely cheated and so mad. I cry a lot which probably doesn't help my healing due to stress. I have been to numerous doctors, and haven't had a MRN but MRI showed a small disc protrusion at the L5 S1 which many doctors say 50% of the people in the world are walking around with this and don't know it. So that is probably not a factor in my pain. It really is trying not knowing what this really is. My gyno was certain it was vaginal atrophy (still not in menopause, but probably peri) but that has all been treated and she said my skin is happy now. Just a very sad urethra/clitoris. My clitoris is actually overly sensitive which is very annoying as when it is flared it makes me extremely tense. I take Gabapentin and Amitryptiline which I'm not sure really helps with pain but does relax me so the pain seems less. I hate taking medicines as I hardly every took pain killers. This has been extremely life changing and has reversed all my retirement plans...(trips to where we could hike, mountain climb, etc.) I have worked so hard staying healthy and eating right so we could enjoy or active retirement together. Heartbreaking.... Well, I could go on and on. Let me know of your updates down this path of hopeful recovery.

  • I will definitely keep u posted on what radiology @ jh's finds out. hopefully the quality of my MRN is good. In research I've read that if the imaging is good they can trace the path of many nerves. ive seen 3 pt's and none of them believe I have significant pn as they can push on the nerve pathway and it doesn't cause me the volume of pain they would expect. But the MRN showed abnormality of that nerve on my left side which is numb and showed no reaction during my emg. Do you have what you would call tailbone pain or possibly rectal pain? At times I never know where the pain is coming from in that area.

    I do believe my tailbone / pelvis could b playing a role here. Even with chiroptractor adjustments I had no improvement only when my tailbone is manipulated in pt do I get some relief.

    I took a long time off from pt and just started up again last week. After pt on Tuesday I came home and took a shower and could actually feel the warm water on my vulva which I hadn't been able to do since May, 2014 . I find it very interesting that an orgasm causes you a flare where it caused me relief.

    i am so sick of sitting around unable to do any form of exercise. I look at people who have no desire to do anything physical and want to scream at them. Get out there and walk/ run you never know when u might not b able to anymore. I can't evn do small weight lifting from a chair.

    My daughter used to be a runner and due to her job quit for a few years. It's just recently since this has happened to me that she's back at the gym getting carefully back into shape. I told her if she doesn't start exercising again she will regret it but to be careful on what you choose to do in the gym. I'm sure she's sick of my, what I can admit are demands, of what do NOT do. But I know she gets it.

    Part of the reason I did not do the pudendal nerve block was because a few had reported it caused them to be aroused all the time (can't remember the terminology) even after they orgasmed it did not diminish. That was just another problem I needed to avoid. Also, they inject a steroid and my daughter had a cream with a steroid in it so I used some of that along the nerve and it flared up. I also had to take a steroid for a back injury and that flared the nerve up as well, so I took that as a sign . Highly " unscientific " but ....

    I completely understand your statement about retirement and trips. A person feels they've made good decisions to work hard , work hard at staying healthy and here comes the big wrench. I don't believe I'm special as to this shouldn't have happened to me I just feel that I've actively made choices to stay healthy and for what? I 100% believe this happened to me because of repetitive squats with weights. I tell all women who talk to me about my health to not do squats at all let alone with weights. An overreaction? Probably but that's who /how I am now. If someone would have put a warning label on my set of kettle bells... Hey, ever heard of the pudendal nerve and how it's probably one of the most important nerves in your body and maybe just maybe your pelvic floor is weak you might want to stay away from repetitive weight bearing exercises.

    I think the amatriptolyn and gabapentin does help. Do you take it in pill form? Mine is a compounded cream which I like. Also, because I've been so sad and anxiety ridden over this I think it's a necessity at this point. It makes me want to eat everything in sight tho so I have to watch that. Have I mentioned how I miss my old body?😡.

    I am really looking forward to what your doctor says in Chicago. I want to provide my email address in case anyone is interested

    I sincerely wish you good luck with Chicago and hope u feel comfortable sharing. I won't know anything from jh's for another 10-14 days at least.

    I hope we can all keep in touch.

  • I don't have tailbone or rectal pain. Mine is all urethra/clitoris area burning/irritating sensation mostly right sided, but recently I have burning on the labia left side by the it's spreading. If I squeeze my legs together, the clitoris gets that aroused feeling and then doesn't go away for a while. When it first started I thought I had pulled a muscle doing Kegels. I had been doing some the week prior and the day before. This is something I normally didn't do, so I really think that had something to do with it. I have researched this and haven't seen any cases where someone has pulled a muscle while doing these. I see Dr. Kotarinos March 19th... She said I could see her daughter next week, but I've decided to stick with her since people come from Europe to see her. Those people stay for a 5 day program. I am hoping it is a trigger point problem, but I've been to 3 other PT's and none of them have found significant trigger points. She doesn't think I have PN, but that's only from what I have described to her over the phone. She said I could have trigger points of fascia that needs to be manipulated/massaged out. God, I hope she finds something. I think I will cry if she does. Nothing is numb, it just seems over-sensitive. I take Gaba and Amitriptyline as pill form. I tried Gaba compound and it seemed to irritate me, so I stopped it. I know what you mean about people working out. I have taken care of myself with exercise, eating healthy, whole foods so I could be healthy for my retirement and now this. My whole family exercises and it's difficult to see them doing this when I can't do my normal routine. When they say their muscles are sore from their workout, I get jealous. My daughter is a track/cross country athlete and I basically train her, so it's very disappointing when I can't go out on the track and warm up or cool down with her. My email is I hate this and it's on my mind every waking hour. I am so worn out with this, but will continue the quest for answers.

  • I am interested in the MRN test. Did you get that at Mayo? I am wondering why I haven't had one. After reading about it, I would think it would be helpful to see if my nerve is compressed. I was diagnosed in fall of 2013 with PN.

    Please share your results. I am willing to go anywhere to try to resolve this condition. My old pain doctor had told me this is my new life. My new pain doctor seems excited to try to find improvement in my quality of life( pain blocks and medicine).

    I understand how it seems unfair. I am only 45 and have struggled with this for almost 2 years. It is hard to think about other things in life when you are fighting pain daily.

  • I read about the MRN on the Internet. I had just met with an interventional radiologist to discuss a pudendal nerve block (he had worked at Johns Hopkins). I am fortunate enough to be able to email my doctors so I shot him an email asking if he knew about it and he said yes, in fact, that is a test we now offer here. My pain management doctor was unaware also. She said this radiologist had just set up a meeting with doctors to go over this new imaging procedure.

    I got it done at Gundersen Health in lacrosse, wi. My neurologist was in her words " out of my league" in reading the MRN but another neurology radiologist read it and could only tell them / me that my pudendal nerve was abnormal and looked hyper intensive. That is why I sent my imaging to Johns Hopkins for a 2nd opinion. They may not be able to tell me anything different but I had to do it. I have to take this as far as I can before I can just say ok, this is it.

    I understand it may not change anything but I just need to know as much as I possibly can. I went to you tube and watched a video from Johns Hopkins where a radiologist gave a little demo on what an MRN showed and I was in awe of it. I was worried the MRN of my pelvis would not show enough of my lumbar area but they assured me it would. I haven't looked at this type of imaging for awhile but I think the lumbar area is the plexus or something and you could seee the nerves and how they traveled out of the spine and I was very intrigued. Maybe I won't learn anything new but maybe I will and I'll be able to find some peace.

    I called mayo and they had not heard of the MRN which is hard to believe so maybe I just got the wrong person on the phone. A lot of doctors don't encourage imaging. They say it doesn't change the treatment plan. I sincerely appreciate that because it's expensive but I told them I had to have it done for my peace of mind. I didn't want to go my whole life wondering if something had happened to me that could have been fixed it they could have seen it.

    I really feel my pelvis, back and tailbone are what's messed up and what has pinched possibly my pudendal nerve or something else that is causing irritation to my pudendal nerve. I don't know what all they can tell by reading my MRN, I also sent the MRIs of my pelvis and lumbar, hoping they could put the puzzle together. If I remember correctly on the you tube video this guy could give a definite diagnosis of piruformis syndrome, etc. which i know my radiologist could give injections for.

    I am far from an expert here but have read enough to know there are possible answers . I may not get any new info than I already have but so be it.

    I will definitely post what Johns Hopkins says. They even offer medical 2nd opinions where a doctor will take what the radiologist has said and review medical information you provide and possibly come up with some recommendations for your doctor for treatment. Who diagnosed you with pn?

    Let's keep in touch. I have provided my personal email in a prior post in case you are interested.

    Take care

  • Thanks for all this helpful information. Could you share your contact information for Johns Hopkins?

  • go to johns Hopkins second opinion and it should come up. I am at work right now so can't copy paste it here. Wanted to respond to u sooner rather than later. it comes up remote medical 2nd opinion. There r different departments and then different options in this departments mssg. Me if u have questions

  • Thanks for your prompt reply. I just decided to check out the site to see how it all works. Unfortunately, Iowa is a non-participating state for this service for Iowa residents at Johns Hopkins. Wow.... I did call University of Iowa earlier today to inquire if anybody does MRN's there and the nurse I talked to said they had never heard of it. I told them they ought to at least look into it and see if it's something they think is reputable enough procedure to bring to Iowa. It's really disappointing since U of Iowa has had a reputation in the past to be one of the best schools to go to for Medicine.

  • I agree. I am waiting for a return call from the U of Iowa pain clinic. I was going to ask the nurse about it. I would like to have one done to see where my nerves are damaged. I have been told in the past that it was hard to tell the exact location, unless I had surgery.

  • You might happen to talk to the same lady I just talked to. I told her they should look into it and I was disappointed that as one of the "supposed" best medical colleges in the US that they didn't even know what this was! My son just graduated last year from the U of I Dental college and got a tremendous education compared to some of his colleagues he is with right now. I know they are good, and just wondered if maybe they didn't think it was accurate enough to justify....or what the reason was for not learning this procedure. There are several states that do this. See this link:

  • I too looked at the website you have listed above before I found out gundersen offered MRN (even a gal in the radiology dept. @gundersen didn't know about the MRN (mr neurogram) when i called. It took an email to my intervential radiologist that I had it confirmed and then my neurologist ordered it. Even when he ordered the imaging the radiology department had it scheduled as an MRI and he had to reschedule it with specific instructions. I'm hoping the imaging is of good enuf quality for Johns Hopkins to give me a 2nd opinion.

    I wonder since your hospital doesn't offer that imaging if you couldn't get a referral out of network and get it paid for since your hospital doesn't offer the procedure?

    They charged my insurance 6K for the imaging which is about twice the cost of an MRI of the same area.

    I may not learn anything more than I know now but I am glad I at least had the option of the imaging. Have you called the neurography institute to find out the cost of the MRN of the pudendal nerve?

    When I started looking into the MRN my insurance company didn't know what I was talking about either. They wanted a billing code and no one at gundersenhealth could give it to me. I thought how ridiculous that they offer a procedure but couldn't give me a billing code. all my insurance company could tell me is that if my doctor ordered the imaging it would probably be covered. So, I did it hoping they would cover it which they did.

    I'm thinking gundersen health has the imaging because this radiologist came from Johns Hopkins . I've read online where insurance companies still consider it experimental.

    Anyone with nerve pain would not agree I'm sure. Even if there is a remote possibility they could see what was wrong would be a gift.

  • Thank you for posting. I feel that it is a blessing to find others who can understand this pain and suffering. Hopefully, everyone will benefit from the combined information.

  • I received my 2nd opinion reading of my MRI's and MRN's from Johns Hopkins. There was a lot of information. I have hamstring tendinopathy with partial tears of the right and left hamstrings tendon origins bilaterally. tarlov cysts at S3 and perineural cysts in the sacral segment of the spine. disc bulge at L5 S1 level the material abuts and vocally compresses the traversing left S1 nerve. I never really read up on the cysts that I saw so many mention because I thought Gundersen would have noticed if I had cysts so never researched that. I'm very disappointed that I've been doctoring for this long for the wrong diagnosis. How did they miss those cysts? Also they told me the bulge was not significant to be affecting any nerves which by reading my Jh report I think they are wrong.

    in reading the symptoms on those cysts I match a lot of them. The symptom that says swelling over the sacaral area of the spine hits home because my husband would tell me that I always felt swollen in that area when he was massaging me.

    My doctor at gundersen was given all this information so I'm curious as to what she will say. I contacted Johns Hopkins today and asked them to forward everything for a medical second opinion now which will take 10-14 days. A doctor will now review what the radiologist has found and will recommend a medical plan if anything can be done to help me. I am really anxious to read that report as well.

    I have pt tomorrow and will discuss the hamstring tears. I'm worried that all this time passing may have hindered any type of fix to all of this.

    My recommendation to everyone , if you are able, get a second opinion. I can't believe I've spent thousands of dollars and over 2 years trying to figure out what was wrong.the report said there was no definite abnormality of the pudenal nerve. Gundersen said my pudendal nerve was abnormal and hypertensive that is why mayo would not see me because they said there was nothing they could do for me. Had they noticed the cysts and tears I bet mayo would have accepted the referral and I could have seen someone by now.

    My MRIs were done 15 months ago and my MRN 4 months ago. I feel the cysts or the disc bulge is affecting my nerves and that is why I am unable to have an orgasm. The cysts fill with fluid and maybe they've just gotten bigger now putting more and more pressure on the nerves / compressing the nerves.

    I hope it's not too late for me to get the correct help that i need and that I will be able to get some pain relief and hopefully get my sex life back. After my hysterectomy I swore I would always get a second opinion. I'm just angry at myself that I waited this long. If you can get a second opinion do it. With the Internet its a lot easier than it used to be.

    I will keep everyone posted.

    I wish everyone peace and happiness

  • Oh my.... Please let me know what they say about the hamstring tendonopathy. I KNOW I have hamstring problems and have for a few years. It's right where it meets the sit bone. I have wondered if this is part of my problem....or all of it. I also have a small central tear of the L5-S1 but was told that 50% of people are walking around with that and don't even know it. So that's pretty normal?? They didn't say anything about a disc bulge though. Mine is a central and they say that's better than on the sides. It seems like we have a lot similar. My hamstring problems are from running hills while training my daughter and I haven't been able to settle them down so if they give you any advice I would love to know what they use for you to recover from that. Do you have hamstring pain? Mine has gotten worse while trying to do some PT exercises and I suppose I did them too voraciously as I am determined to get this my detriment. It is very sad that this wasn't caught earlier and I'm curious to see what the doctor says about it after reading the report. Gosh, I'm pretty upset that for some reason Johns Hopkins won't read information from Iowa or at least MRN's. I hope you get answers and that those problems can be remedied so you can feel better...and have good sex again!!!

  • My pt said that a lot of people have tendons torn in their hamstrings like u said very common. She is doing a lot of massage and ultra sound on them to get rid of the scar tissue. This week was my 2nd appointment with her concentrating on hamstrings. I have to say I've had immediate relief in that area. I never thought my sitting pain could be, in part, coming from partial tears there. My sitting pain has improved, thankfully. She said it would take 5-6 pt seasons to break down the scar tissue from the torn tendons. Once that is broke down she said the scar tissue will not return. I've been doing light hamstring stretches. Each day I can bend further and further which is great. I never would have dreamed I had that type of problem which contributed to my sitting pain. I don't do a lot of exercising for hamstrings its pretty much all ultra sound and massage once a week.

    The massaging she does is fantastic she seriously massages each hamstring for 10 -15minutes each week and that's a lot. To say it feels amazing is an understatement. The area when the butt cheek meets the leg was super tender but is improving.

    I am still waiting my my medical 2nd opinion from Johns Hopkins and will let everyone know what they say. I wonder why they will not read MRN's from Iowa? What would be the reason for a few states not allowing that? So unfair. I wonder if another major medical facility offers a2nd. Opinion, like mayo clinic in Rochester?

    With the Internet it could be an easy search. Of all the doctoring I've done in the past 2 years this has been my best decision so far. I wish you could do this so you could possibly find some peace.

    Take care And I'll post more when I know more. Don't hesitate to ask questions if you have them or if I've confused anyone

  • I'm so glad that your sitting pain is improving. Have you seen any progress in rectum, urethral or clitoral. It might take some time for the nerves to "reset". Did you have burning when you sat befor the hamstring massages or was it a myscle type pain. I have burning. I really hope for good news from you in the next message! Really glad the PT is helping. My hamstrings are pretty sore. I am seeing Rhonda Kotainos in Chicago tomorrow. She is one of the best PTs around so I will let you know what she thinks.

  • I returned from my appointment with Dr Benson in South Dakota this past Thursday and wanted to give an update. I would highly recommend going to him for pudendal nerve issues. I had my initial exam on Monday and he did bilateral pudendal nerve blocks on Tuesday to confirm PN, which it did. The steroids did not help, but he stated the blocks are done mostly for diagnosis purposes with the hope that the steroids will be therapeutic. On Wednesday I had bilateral trial pudendal nerve Medtronic Inter-Stim device surgery and Thursday I was on my way home. So far, it is helping greatly. If I get 50% or more reduction in pain (which I have surpassed) Lord willing, insurance will cover implantation surgery of the permanent devices. He uses permanent leads for the trial so you don't have migration issues like I did with the sacral trial. He also encourages you to wait 2-4 weeks to make a decision. He is located in Sioux Falls, SD at the Sandford Women's Health Clinic. The Sandford facility is awesome; there is a surgical tower connected to the clinic and we stayed at an affordable, comfortable hotel connected by a skywalk, so it is very convenient. More importantly Dr Benson is a compassionate, knowledgeable doctor. He says for every 5 women that are sent to him only 1 truly has PN, so if you are questioning your diagnosis, I would highly recommend seeing him. I gave his phone number above.

  • Thank you for the information. I'm glad you are feeling better with the procedure. I went to the DPT in Chicago and she had diagnosed me with posterior femoral cluneal nerve problem. I'm going back to get for a week in April so I'm hopeful she will be able to help me.

  • Hello. I have been reading the threads here on this site. I was diagnosed with PN in 2012, went through the blocks, which did not work for me, and then I had pudendal decompression surgery by Dr. Antolak in May of 2012. He retired last March. I believe my pain was caused by hysterectomy in 2003, always had pain sitting after that, until it got so bad in 2011, I could barely function. If the nerves are indeed trapped, that is what causes the squeezing and burning pain. At one point before my surgery, I even lost bladder control. That has not happened again. Now I am still healing from my surgery, which can take years for the nerve to regenerate. I am trying to find a doctor in Des Moines to just help manage pain. I am hopeful the nerve will continue to regenerate. I feel all of your pain as you describe your pain, all the doctors you have seen, and loss of feeling, etc. I feel your pain in every single way. I just hope that the surgery is successful. ONE THING that has helped me more than anything, even medication, is what is called K-Laser. It was recommended to me by a gal in Minnesota, who had the same surgery performed by Dr. Antolak. She told me to Google K-Laser and go and get it done. It helped her pain and healing. So, I did a search on Google for K-Laser in Iowa. They have it in Des Moines and Cedar Rapids. I highly recommend you get this done. It is cold laser (absolutely no side effects). It goes deep within the tissues and helps to heal inflammation and pain. I have been getting it done for quite a while now. They also laser my feet and knees, etc., due to long-standing standing all the time because it is difficult to sit. I have a 3-inch vertical scar in each buttock from the surgery, but they are looking much better now. I think in time the nerve will get better and better, but this has been a long haul. You can read all about K-Laser on the Internet. I go to Langel Chiropractic in Des Moines to get this done. Insurance does not cover it unless you get a letter from your doctor, and then that is even questionable, depending on your insurance, but to me it is worth every penny. It is $40 every time I go. I wish you all the best of luck. I hope you get relief.

  • Thank you for your input. I have wondered about laser also. How often do you get treatments? Des Moines is not too far for me to go.

  • Also, do they do laser through clothing or do they put it right on the perineum?

  • As far as laser goes, it goes directly on the skin. For example, I have 3-inch scars in each buttock from the decompression surgery. Those scars are almost unnoticeable now. After surgery, they were awfully ugly looking. They laser directly on the buttocks, my knees, my feet, etc. They do not go inside of you. It is painless, a little cold at first and then nice and warm as the laser goes on. Very comforting. I started going a couple of times a week and then eventually down to once or twice a month. I have had pain in the buttocks and deep into ischial tuberosities (sit bones), which they also laser, basically everywhere on my buttocks. I can only sit for a short period of time due to pudendal nerve still healing, but I'm better than I was 4 years ago. I would be lost without the laser. Before you go, look up Langel Chiropractic first online. They are on Ashworth Road. Very nice people who really care. Tell them Tanya sent you. :) Their website can give you lots of information on what exactly the laser does as far as healing goes. It is pretty amazing. The K-Laser started out in vet clinics. It really helps animals, too. Now sports teams have them on hand for their players. Pretty neat. Best of luck to you.

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