Pelvic Pain Support Network
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PN or PFCN?

Won’t bore you with too many details but going on 2 year of extreme pelvic pain. Started with pain near right sit bone upper hamstring and burning right foot. No injury or event that I can link it to, was working out pretty hard. Fast forward 2 years later over 150 doctor visits, every injection MRI and test there is- labral tear surgery last year. Pain has progressed to entire pelvis to include genitals—but always have pain near ischael tuberosity. Sitting/driving is brutal. Question is- has anyone on this board had PFCN issues that were originally thought to be pudendal nerve issue or Piriformis. Having surgery in July to remove part of the PFCN. Open to ANY comments. Thank you. peripheralnerve.org/meeting...

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Sounds exactly like mine. Dont have the fai. That made everything worse unless the surgeon knows you need 15 min on the surgury boots. My is on my left side. Intense pelvic pain, sit bone, tailbone and my groin is worse after I had the labral tear fixed. PCFN what does that stand for. I been dealing with this since 2013. Take care. Be kind to your self. What state do you live in. Do you have a pelvic floor pt? Any procedures done to help thus far for you? I am so sorry your gping thru this!

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Too late, had labral tear FAI Cam impingement surgery last summer out of desperation. I had a gut feeling it had nothing to do with my sitting pain. PFCN is posterior femoral cutaneous nerve. It can mimic symptoms of PN. It runs near the crease in your buttocks where you butt meets your upper hamstring. It can effect your tailbone. My tailbone kills me! I’m in Utah, I’ve had spinal epidurals, piriformis injections, pudendal nerve blocks, a billion steroid injections, tailbone injections, biopsies, blood test, genetic DNA testing, PT, every med possibly, 4 MRIs, CT scan... not a single thing has helped. Pain is worse as the day goes on. Groin never bothered me until after surgery but sitting pain and burning foot started months before surgery. Ugh... how about you??

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I was hoping to hear you did not dear. I did the same thing. My pelvic and hip pt thought I should have a fai. It made everything worse. My groin pain was only at the opening of my leg. Now it like someone is stabbing a knife from my inside of thigh up to my hip bone. My feet are numb and hurt since the fai. I also never had stabbing pain close to my tailbone. I cant lay on my left side at all. I used to stand cant.

I start searching for surgeons that know of PFCN. I am disabled but still going thru the process. I fell for 2 year after my fai. My surgeon was a jerk. He did not listen to anything. Once I get my disability then I am going out of town to get this fixed. Did you look a the pudendal hope page? I was exercising like you. I was doing a heavy hack squat with friends from the gym. Something snapped.

My husband wont being me out of town. He is very angry about my situation. If you find something let me know. Ours seems so close.

Take care. Has a meds helped you?

This is a overlooked condition and most doctors think your crazy. I dont know how much more I can take.

Find support. I live in Michigan west side of state. I am here for support. The first 2 years I cried in bed. Does PCFN give you pelvic pain. My in deep in the far corner left side and when I flair into my vulva. I will keep raying for all of us that suffer in silence. I just went for a 2 hour car ride and my groin and am in constant stabbing pain. Cant sleep.

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Dear lord, I pity you and know the hell you are going through. Trying to explain chronic pain to a doctor that has never had chronic pain is a challenge. I went to a Pelvic Floor PT and she told me I need to wind down and do mediative breathing. I told her, YOU try and wind down when your on fire! I have read books about TMS (Dr John Sarno) books on how the body reacts to pain.. etc... I created a word doc listing my symptoms and emailed to any pelvic doctors I could find. Have you heard of Dr. Timothy Tollestrup! He takes insurance and from what I’ve read is one of the best. I’m flying to Vegas and he is performing surgery next month. I truly don’t know if this is the fix. I had a pudendal nerve block and have not been the same since—Started to get genital pain now. I have had EVERY specialist under the sun perform tests on me, mainly at the University of Utah. No luck. Stay positive (I know it hard as I’ve been on the edge of not wanting to go on). Doctors think you are crazy and it’s all in your head. No one makes up pelvic pain. Email is jev1972@yahoo.com I’ll give you more info. Stay strong my friend!!!

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Researchers in neuropathic pain and neuralgia used to think an “up regulation” of pain messages occurred at the spinal level then continued to the somato sensory cortex of brain where pain perception occurs. Now, many years later same researchers know that the “up reg” occurs in the brain. I’m sure after many failed attempts at at cutting nerves, radio ablation, steroid shots, implanting electrical stimulation, etc. all no or temp relief only to have pain come back worse.

That’s what I had experienced in the early years of the past 36. Rsh is catching up but so much to learn yet. I’m afraid the answers will not be in my life time since I’m almost 61, but I pray in time to help everyone in the group. I started this journey of unexplained pain before it had a name. First label I heard was neuropathic pain and it is still used today. Names have come up depending on which nerve or nerves r involved but labels in my experience haven’t led to “cure”.

In the beginning, Each time I experienced a flair from an injury or unexplained, I felt an anxious flood of energy or frenzy to look to doctors to fix the pain. After many years Of negative n unkind responses from “doctors”, I learned to use my own experience to guide me.

The main principle I learned is to stay away from the nerves. Each attempt to fix the pain with current medical knowledge only led to more pain. Usually a flair of unbearable pain lasting 6 mos or more with the pain never returning to the previous baseline. It’s been like a staircase. Each setting the baseline level one step higher. Each time I didn’t think I had it in me to bear the pain.

PN is the newest area of my body to dev chronic pain. After fracturing my pelvis n sacrum.

I have found to sleep at night If I lay on unaffected leg on my side with a pillow between my knees, bend the unaffected leg up 90 degrees and straighten the painful top leg that I’ve been able to fall asleep.

I hope u’ve found a way to sleep. If u haven’t, try the position.

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See the bottom of my original post. I attached a link that shows different sitting pain patterns. Very informative.

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It’s possible to have both: PN and PFCN.. I seem to have both

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What is you story? How did pain start?

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I had a minor pelvic surgery last year and it triggered PN... From a healthy and fit female I turned into a frail wreck in a matter of weeks. I had so many symptoms, and pain was 9 out of 10 most days.. but I was diagnosed quite quickly (within 3 weeks) and was put on Lyrica and nortriptyline, pain was better and I had 2 blocks last year, this combination saved me and I was able to sit and carry on with my life, but.. it's never the same again. The blocks didnt make me numb at all, I only had relief 2 weeks after, like a complete pain relief, 2-3 weeks of a bliss, I had hylaronic acid blocks, not steroid. However, I had also PFCN symptoms, like buttock pain, sitting on a rock feeling, leg pain, back of a thigh and rope around my leg. I also have genital pain and rectal pain. I think I have both, PN and PFCN... not sure if it was positioning during my surgery or just cutting triggered nerved further.. I am doing better on meds and my dr doesnt want me to have any more blocks, but I still dont know why I didnt go numb, he says it's possible as they didnt put too much of anaesthetic.

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Unreal, I feel for you. Exact same here, happy and healthy to feeling like a weak old man within a matter of weeks. Honestly, I think it’s hard to get the block done correctly, I had to travel out of state to find a knowledgeable doctor that knew how to perform the pudendal block. From what I’ve learned after multiple blood is the needle must be within millimeters of the nerve. Unfortunately The PFCN and Pudendal nerves are very close together. Why not try steroids injections? One of the PFCN nerve branches is near the perineum.

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In my clinic they don’t believe in steroid injections.. they say in their experience they are not helpful. I definitely have PN, PFCN can be dodo inflamed simply because of nerve crosstalk. But I have solid PN symptoms. My dr is aPN specialist and very experienced in performing these blocks, not sure how he could miss.. but it’s possible

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Did you ever think your pain could be caused by muscle tension? If you know your pelvic muscles are tight there is a course that can help.. I did it and can sit now for hours.. sounds like you have PFCN more than PN. PN often has recital and genital symptoms

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I’m a very tense person and do believe it’s playing a roll. What course? I’ve been reading about TMS. Please advise. My email is jev1972@yahoo.com

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Sorry I didn’t see this comment until now, I will email with the link

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Hi I am suffering from Pfcn, I also saw many doctors.. I really hope surgery will help you. Who is doing it?

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Dr. Timothy Tollestrup in Nevada. How did you narrow it down to PFCN.

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Can you provide more details please?

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I got block to the Pfcn, I saw all the best doctors and still I don’t know what to do, we can talk on Facebook if you want.

Assaf Roth

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No longer have a FB account, did the PFCN block relive any symptoms? So hard to tell with the blocks because they can numb such a large area.

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what is PFCN?

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I looked it up and I will talk to the Pelvic therapist and doctor next week. Will see both. Anything you can tell me might help.

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It is a sensory nerve and runs from your sacrum down towards your thigh google “sitting pain algorithm” should be a PDF document link that shows different nerves that are affected by sitting. I tried to post the link but it won’t let me. PFCN nerve can also have pudendal like symptoms.

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See link at bottom of my original post. I attached a link, very informative.

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Have you had a ganglion Impar nerve block ? It supposedly calms nerves around the coccyx including the cauda equina nerves. My cauda equina nerves were ripped apart by a pelvic physiotherapist and it actually made my nerve stretch injury worsen.

I feel for you and I to find it absolutely appalling that doctors, neurologists and neurosurgeons where I live ( B.C. Canada ) know nothing about this. It has been ten years for me and just this week I met a Pain doctor I trust and who completely understands what I have suffered.

I had successful decompression surgery of the rectal portion of my right pudendal nerve. It was being compressed by ‘ juxtaposed’ and overused ligaments every time I sat or lay down.

Repetitive stress can cause injury.......I had a job where I stooped on every shift for 30 years putting things on lower shelves in giant fridges, bending over and picking up boxes off of the floor ( 8-10 pounds ), I was an avid gardener who picked up her own bags of soil, peat moss, manure, I walked a dog everyday for 13 years and I stooped to pick up his poops, I was a gymnast, a ballerina, and a hiker. The ligaments were over stretched and the indolent injury to the nerve happened. The pain was so bad I could hardly breathe, No one cared. I hope you have some emotional support. I had none.....my own family did not believe me and they thought I was depressed. NOT! I LOVE life. Keep us informed.

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British Columbia beautiful territory I’m originally from Washington State funny thing is my pain started while I was getting ready for a hell-skiing trip to the Kooteney’s in BC.

I did have a tailbone injection, no help and pain Dr. wants to do the ganglion block but I’ve had so much cortisone put in my buttock/pelvis the doctors won’t do anything for a while. Did you get any relief from the block? I’m not joking when I say I’ve had about 25 to 30 injections in my spine all the way down to my hamstring. I find nerve blocks to be very hard to diagnose, so much area goes numb.

It’s mind blowing and frustrating that the medical community has so little knowledge of pelvic pain I’m so sick of being told that I need to learn how to relax and meditate trust me I’ve tried everything possible and I’m extremely open-minded. It’s like having an invisible knife in your back that no one can see.

The ironic thing is I spent 20 years in the military— hardly a scratch—and then get a desk job and now I’m in constant debilitating pain. Was the pudendal surgery your first

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Hi Konagirl60. I too live in Canada. Ontario. I can’t believe how far we are behind in medicine and understanding the pelvic floor. Talking to drs about it is like speaking a language they don’t understand. So frustrating. N

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There was a terrific neurologist working out of the Mount Sinai Hospital. His name is Dr.Allan Gordon. He worked in the Wasser Pain Clinic. He diagnosed me doing a pin prick test of my entire genitalia and upper thighs. He referred me to an expert in Minnesota where I was formally diagnosed. ( came home and my G.P. did not agree and my Pain specialist dropped me.....how kind....NOT ! ).

Unfortunately, a patient accused him of wrongful behaviour and he was in court in May. As of now, he is not working. He was THE ONLY neurologist in Canada that knew about P.N.E. I find this utterly sad and very suspicious.

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Guess what? The reason you are being told to relax is because the doctors think it is emotion based when it isn’t. The old men’s club still exists and elderly male doctors are NOT very supportive of women in general. They think we are being hysterical when we are in agony from neuralgia and myalgia.

I understand about the numerous injections you have had. I am curious if there is a surgery that could help you? No, I am having my first ganglion Impar nerve block in a month’s time. I am scared but after ten years of nerve pain I am willing to try an injection. I have not had any since the Spring of 2010.

It is beautiful here but the health care system is terribly underfunded, under staffed and overworked. More and more people with pain are being victimized. There is talk of decreasing care for any B.C. citizen with chronic pain. They don’t care about 1 in 5 people....all in chronic pain. It is sad.

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During this journey I’ve actually found the younger doctors, mainly in the practice of Neurology and physical therapy seem to try and relate pelvic pain to tension/emotional, based concepts. There is this “mindfulness” theory being taught now mind over body.... ya tell that to me when I’m on the floor crying due to pain...I believe tension from life events do play a roll, but a very limited roll at best. My life was amazing when my pain started, I have a wonderful job, family and friends. I was fit, happy and loved living life. My mind did not just creat this pain, it is the cause of a tangible, physical condition. Trust me I’ve spoken to therapist both mental and physical and they are unable to relate. Pain cause anxiety, anxiety causes depression, it’s a vicious cycle. Take away the pain and the anxiety and depression (from living in constant pain) will go away. It’s that simple. I never believed in chronic pain until it happened to me.

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Live your authentic life. I know the truth. You know the truth. I find it weird that no doctor cannot imagine what living with 24/7 body pain would be like? Where is their empathy or concern?

Keep calm and carry on with many breaks to pace yourself and may you sleep well every night. Sleep heals.

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Thank you. Same to you. I did not want to bring up meds or drugs but have you tried Kratom? It has helped me through the REALLY bad days.

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Hi Jeva1972. Where do you get Kratom? I live in Canada. We are just passing a law for legal marijuana soon. It it a legal substance? No judgement. N

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cBD suppositories when you get legal.

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Can you get them in the US in states where cannabis is legal??? NV, CO, WA?

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Yes! The dispensaries are very helpful. Mine is now making and dispensing suppositories because of me. I have made my own. Others have asked for them as well. Good luck! Keep asking and gathering info.

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You have to know the laws about buying across State lines.

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Go Canada!!!!! Don’t ever worry about what others think I would rated eat or smoke a plant then take the pills I’ve been given. Lyric, gaba, amitriptyline nortriptyline Cymbalta Valium tramadol they’ve all messed with my— head cannabis doesn’t. I’ll send you an IM about Kratom, you definitely want to buy it from reputable vendor. kratomnews.org/the-ultimate...

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Hi Jev1972 I agree about taking all the meds. GABA and lyrics were the worst for me. Others did nothing. Naturally grown is the next option. Drs here are still on the fence about plant products. Still ask you every time if you smoke pot. Hopefully that will change once legalized. July 15th is the date. I’m going to have my son get me some. Lol. N

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Absolutely just make sure you don’t have too much ice cream in the house

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Jev1972. Lol. Lost some weight, not on purpose, so ice cream here I come! N

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Alonthose pills are poison. They ruin your brain and cause weight gain without even consuming more food.

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I agree about younger Neurologist. I met one last year n had to explain 36 years of neuropathic pain taking over more areas of my body with each injury n surgery. I stopped nerve blocks etc early on bec I found messing w nerves made pain worse overall. Esp cutting nerves

This neurologist was kind and I was there becuz I was diag w polyneuropathy or neuralgia in both lower legs in feet on EMG n I’m not diabetic.

I’m concerned about u looking for answers w surgery to enlarge the space for the nerve. I found this on Wikipedia

The term pudendal neuralgia (PN) is used interchangeably with "pudendal nerve entrapment", but a 2009 review study found both that "prevalence of PN is unknown and it seems to be a rare event" and that "there is no evidence to support equating the presence of this syndrome with a diagnosis of pudendal nerve entrapment," meaning that it is possible to have all the symptoms of pudendal nerve entrapment (otherwise known as pudendal neuralgia) based on the criteria specified at Nantes in 2006, without having an entrapped pudendal nerve.[7]

I disagree w the statement that we are rare in numbers. Those of us suffering with PN.

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Did you have nerves cut??? I’m actually having a branch of a nerve removed and each end grafted back into muscle. Desperate times call for desperate measures. (Fingers crossed) :)

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I had true pudendal nerve entrapment....specifically, the rectal portion of the nerve ( not the clitoral ) and part of the perineal portion of the nerve became trapped between juxtaposed ligaments. The sacrotuberous and sacrosphinous ligaments can be overused, move and start adhering to fascia and in my case they vice gripped the rectal portion of my right pudendal nerve every time I sat AND after physiotherapy, also every time I lay down. It was agony! I am so grateful my nerve was released.

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How were you diagnosed? MRN?

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This is the third attempt to answer you! I believe my I-Pad is faulty. I keep typing a response and on its own the page disappears!?

A neurologist in Toronto, Ontario, Canada did a pin prick analysis of my inner thigh tissue and all of my genitalia. It wasn’t normal so he gave me a referral to an expert in Minnesota in June 2009.

The U.S. specialist did the pudendal motor latency test and it was not normal. He also did a successful pudendal nerve block and I sat for 24 hrs. He said I likely had P.N.E. He spoke with my Pain specialist in B.C, while I was at his clinic in Edina, Minnesota. He told her I needed three more guided nerve blocks done one month apart and if that did not give me relief he could operate.

I came home and saw my G.P. She was angry and she DID NOT believe the U.S. expert! She also told me my Pain specialist had dropped me. I went severely downhill after that as my pain hadn’t been properly controlled at all since February 2008 when this all started.

I had severe sleep deprivation and lost cognitive function. I almost died but I met a registered nurse by divine power and hired her four months later after two new specialists in 2011 were not caring either.

She was able to determine that specialists here were not following through and doing what they were telling me they would do.......get me back to the U.S. for sugery! She caught a doctor lying in a telephone appt. !

My case has been a medical nightmare and I know I am lucky to be alive. The doctors here all committed fraud....they knew I had a metal Filshie clip near my rectum but they did not think it was a source of pain!? Of course it was.....it was being squeezed every time I sat by the juxtaposed ligaments! It HURT LIKE HELL? I was forced to sit on ice!

I think you need a second opinion. What do the physiotherapists say?

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Holy shit! What a nightmare! Every time you see a new specialist it’s like starting over. Did he use the glove that sends an electric current (EMG) for the pudendal EMG? No one here has a clue about the PN. I know more then most doctors just from the literally thousands of hours I have spent learning about pelvic floor issues. Don’t even get me started about the thousands of dollars I’ve wasted on chiropractors and specialists I’ve taken every herbal supplement and vitamin known to man but when you’re desperate you do what desperate people do. I’m at the point where doctors can just start cutting out every nerve I have one by one... lol

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No, I do not believe you have to cut/ incise every nerve. Nerves may need releasing from other structures. The surgery is done right into the buttock.

I spent thousands of dollars on useless chiropractic work, physiotherapy that made it worse, massage therapy, reflexology. Naturopath treatments supplements all to no avail. What a waste of my savings and yours.

Complex pain multidisciplinary clinics are needed and no one wants to pay for them. Here in B.C. they want to take away therapy for peoplewith chronic pain. Even if the doctors caused the pain.....it doesn’t matter. They seem to be able to get away with murder.

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Hi Konagirl60. I just wanted to say how sorry I am that you have gone through such a nightmare. You should be so proud of yourself for your courage, motivation and endurance to have kept going. You are certainly an inspiration to me and I am sure many others. I hope you are feeling much better and continue to do so. N

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Thank you. What I have experienced is simply not acceptable in a civilized country like Canada. I am very very disappointed that I was slandered, dismissed, maltreated and left to die in agony. I believe it all happened because my G.P. lost respect for me because I never remarried but I had a lover and thus I was having sex outside of marriage. Also to, she never believed me and just thought it was an emotion based issue. NOT!

Doctors are the cause of the opiate problem. People with pain and injury are not being given proper treatments and care. Now that it happened to me I am certain this has happened for years.

You are very thoughtful and I appreciate it.

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Back in 1982 during a second low back surgery, the neurology community thought denervation, cutting sensory nerves, was a good idea. 3 days after surgery, I was in the hospital still n crying hysterically in pain. A flair like I had never had before. Went into surgery with pain down left leg. With the flair came pain down both legs n low back. I was 23 years old. It took 6 to 12 mos before pain level came down but did not return to the level I had pre surgery. A few years later in grad school I learned about up regulation of nerves and “gate control theory”. GCT many years later replaced w up regulation believed to occur at level of brain not in the spinal cord.

Ev inj n surg since the same thing happens day 3.

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Hi Jev1972 Well, you said it all and so very well. I have been telling my gp that I feel like a hamster on a wheel. He looks at me like I am weird. He keeps suggesting I take the mental health route. To me going to see a psychiatrist just means antidepressants and therapists. Again another wheel to get put and stuck on. Like you, I had a very happy and well balanced life until this hit me 3 years ago. I own my business so I made sure I had 6 months of savings as the experts suggest. Gone through that now. Other savings as well. In Ontario Canada we have ODSP, which is basically disability. I applied because the root of my pelvic pain is a huge problem in my back. This has been confirmed by X-rays, CT’s and MRI. I have a pinched nerve which causes severe rectal pain and because of the displacement of L4 vertebrae that is rotating to the right, it is rotating my pelvis also causing the pelvic floor muscles to be super tight on the left. Have been going to physio for months, paying out of pocket. I had to stop because of the cost to me. The worker from ODSP came to my house Monday. After showing her all the medical data I had, which is a lot, and my financial status, I was told I would have a better chance getting help if I claimed mental distress. I just said to her. “ you are kidding”. I am in a full back brace, in bed, can’t walk very well and in pain from the upper back down. Yes, I am stressed to the max. I try and distract myself all day, just to get through the day. Any meds I have tried don’t help. My gp has put in an urgent request for a back surgeon but has no idea when the app’t will occur. Just be patient, I am told. This just adds to the stress. My point is, why should I have to claim I am mentally ill, to get disability when my disability is clearly my back. I need surgery and should have had it 6 months ago. What happened to preventative medicine? I think the medical system is run like a business as I know how that works very well. All I can really say is that Canada is very poor and totally messed up regarding our health care and disability support. N

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Do not report emotional distress.....it could be used down the road to force you back to work. Be authentic.....

Have you contacted Share Lawyers in Toronto? They might be able to help you. Toll free number is 1-888-777-1109.

I agree, you need surgery.

Is an Insurnace Company harassing you? They do that because they DO NOT want to pay out legitimate disability. It is immoral and for a modern country like Canada.....a disgrace! Call the lawyers.

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Hi Konagirl60 What do Share Lawyers do for you? Do you have to pay them? Barely making ends meet now. Nancy

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Funny how the “medical process “ just adds to the anxiety and depression of Pelvic Pain. I went to my fourth physical therapist yesterday as the others kept trying to work on the mental side I finally found a therapist that said BS to the whole meditation and mindfulness crap. I truly believe tension stress and anxiety can add to symptoms but after 2 years I’ll take a scalpel over a psychiatrist any day!! Maybe I’m a fool but I’m not about to give up. If my surgery doesn’t work in a few weeks I’ll do my best to heal and go under the knife again.

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I hear you! Good luck. Get your rest, eat really healthy before the surgery and go in with the meditation that you are loved and all will be well. ❤️❤️

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Much thanks!!!

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Jev1972 I too wish you the best for a successful surgery and speedy recovery. I hope to hear from you before your surgery and after too. ❤️

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Jev1972 - Did you have your surgery with Dr. T in Las Vegas? I can't find a post where you say you have. What is the result?

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Yep - in July... I’m no better, actually a bit worse due to surgery pain. Ugh...

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I'm so sorry to hear that. You still have severe post-surgery pain? What is your next step?

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I’m scheduled to see an Interventional radiologist next month. More blocks... starting over from scratch. Most of my buttocks and rear thigh feels like a giant numb balloon and the incision area is very tender and sore. Started going back to the gym to regain strength. Pushing through the pain and hoping things will get better. I came of ALL meds and my mind (anxiety/depression have been greatly reduced). I’m also trying not to dwell on my condition and this has helped tremendously!!!

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Did the surgeon remove part of the pfcn and graft each end back into muscle in the end? Are you still in the same amount of pain as you were before the surgery? Does this mean that the pfcn isn't the cause of pain, or do they think the surgery will take time to heal? Thank you.

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Thirty six years of developing neuropathic pain or neuralgia ev time injured first low back n two surgeries after fall. Diag severe neuropathy both lower legs. More recently hip repl dislocated twice had revision then fell fractured arm. N pelvis/sacrum.

Now suffering w pudendal pain.

Each time resulting increasing neuropathic pain in bed area and all previous fired higher. Pregabalin, Lyrica at 75 twice day no help. Gabapentin just made me sleepy And it has no increase in reducing pain as dose goes up. Lyrica does.

Unfortunately, I don’t believe surgery to enlarge foramen or tunnel for nerve to run through is effective in majority of patients

The pain problem lies in the brain. It up regulates and increases the perceived pain with every insult to body.

Re ur burning foot/leg. Have u had an EMG of the legs to determine if u have neuropathy?

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2 EMG both negative. Also 3 biopsy’s. Yes, right foot burns, started same time as sitting pain started. Lost massive amounts of muscle in legs.

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I’ve lost all muscle mass too. I can see my tibias on both sides. I can’t walk stairs. Use a walker now. Can’t fall again. Was doing pool therapy in PT. The hi low pool amazing. Floor raises up so I cd step on n hold rails. Then it lowers to chest high water taking majority weight off legs. Floor is a treadmill.

Had to stop when PN started. One Wk I cd do the PT in pool n next time I went I thought I wd lose my mind before I cd get out of pool shower n get home n lay down.

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Unreal, I can see my tibias too! My legs are only slightly big then my arms. 2 years ago I was running 5k’s and going to gym everyday. I will PM you have a few questions.

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Hi , what is your email? We can exchange information and maybe learn from eachother experience...

Thank you

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Jev1972@yahoo.com Looking foreword from hearing from you!!!!

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Hi I sent you an email, please Tel me all doctors you know who can help with Pfcn . Thank you

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Check your email, sent you 2. We need to talk.

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Absolutely just make sure you don’t have too much ice cream in the house

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