Pudendal Neuralgia or Labral Tears - Pelvic Pain Suppo...

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Pudendal Neuralgia or Labral Tears

kamals profile image
82 Replies

Hi, I am a male 41, 190 lbs, 5'10" , My symptoms are below.

-pain in the perineum, scrotum and inner thigh.

-5 MRIs, some of them 3T - all showing no abnormality or anything untoward on the pudendal nerve. MRIs have shown labral tears in both hips.

-scrotal ultrasound - varicocele

-pain in penis tip while seated

-pain in the tailbone and buttocks after sitting. Can sit on soft surfaces but can't sit for long on hard surfaces. burning while urinating after sitting for a while.

-really tight and retracted scrotum and penis at times... really uncomfortable. Penis feels really light and lifeless when flaccid. I can get erections and they are firm. When flaccid, seems like the scotum hangs a lot lower than it used to.

-no pain in perineum while driving.

-stools used to be really narrow and compressed but they are now normal. I used to have perineum pain after bowel movements but now, the pain is moderate.

-pain in the buttocks when doing anything physical such as shovelling snow, carrying groceries or anything moderately heavy. pain in the buttocks and perineum when kneeling or doing anything on my knees or all fours.

Are any of these symptoms have a semblance of pudendal issues. I am currently undergoing pelvic pain physiotherapy and my PT doesn't think it's PNE. Could my symptoms would be more in line with labral tear issues?

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kamals
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82 Replies
Bombicka profile image
Bombicka

Hi. I have all these horrible pains and was lately diagnosed with sacral herpes and being on daily supressive therapy with valtrex. Is not helping so far.....

kamals profile image
kamals in reply to Bombicka

Hi, I am sorry to hear that, how was the diagnosis done?

kamals profile image
kamals in reply to Bombicka

Hi again, I just googled sacral herpes, I don't have the symptoms consistent with this virus so this is something I can rule out.

Sandra2468 profile image
Sandra2468

Just read your posting.

I am so sorry you are suffering so.

May be you have some form of nerve entrapment or prolapse issue.

For prolapse you would need to see a colorectal doctor specialising in prolapse.

For nerve entrapment/decompression you would need to see a pheripheral nerve doctor.

I do hope you get some feedback

Sandra

kamals profile image
kamals in reply to Sandra2468

Hi Sandra,

Thanks for your message, I saw a colorectal surgeon and he said everything was normal. I had an EMG done at a great hospital and it was actually done by a neurologist and he said everything came back normal. I am on Notryptiline (10mg 3x daily) and it seems to be helping. My problems worsened when I was constipated a year ago and the doctor gave me a strong laxative. Since then, I have had these symptoms. :(

Sandra2468 profile image
Sandra2468 in reply to kamals

Hi there,

Just wondering if you had a proctogram sitting or mri. As you mentioned your problems worsened when constipated.The colorectal surgeon you saw may have not been too thorough. But in all fairness the tests are not really conclusive. As they provide some info but cannot always be accurate.

The scans done by a pheripheral nerve doctor are normally nerve related scans. (neurography)

To be honest it is a mine field out there.

I think your system is better if you are US based.

Your pain issues are difficult to analyse.

I hope someone out there can offer some advice.

Sandra

kamals profile image
kamals in reply to Sandra2468

I have had an MRN of the pelvis it explicitly stated "no abnormality seen along the pudendal nerve". My colorectal doctor did a sigmoidoscopy and didn't find anything. They also did a fecal occult blood test for colon cancers which was also negative.

You're right, I didn't realize how little we know about the human body until my problems started. I am in Toronto, Canada.

chillijava profile image
chillijava

do you have any pain when at rest lying down or at night

andrea

kamals profile image
kamals in reply to chillijava

Hi Andrea, I have pain in the hips when I lay on my side, in semi fetal position. That's my natural sleeping position. I attribute this pain to my labral tears. If I am lying on my back, I have pain just above the coccyx in both buttocks. I also have pain in the buttocks when I am sitting down.

kamals profile image
kamals in reply to kamals

To clarify, the pain in the coccyx and buttocks region is like s burning tingling pain when I am laying flat on my back.

chillijava profile image
chillijava in reply to kamals

wow you do have a lot of pain, i have very little pain when lying on my back in bed or on the sofa and i was told that this is another symptom that confirms my pne diagnosis, as most people do not have pain when laying down

kamals profile image
kamals in reply to chillijava

It's not that severe but it's still life altering.I have pain in the buttocks when laying down which sort of goes against the whole PN/PNE diagnosis. I have no pain with sex either which also goes against the PN/PNE argument, does it not?

chillijava profile image
chillijava in reply to kamals

as far as i know yes you are right, it certainly applies to me. getting a diagnosis is quite a feat in itself

andrea

kamals profile image
kamals in reply to chillijava

It's such a crapshoot, they call it chronic pelvic pain syndrome which is such BS diagnosis. It's sort of the bucket where you throw the problem when you can't figure out what it is.

chillijava profile image
chillijava in reply to kamals

i have always said that the diagnosis vulvodynia is the same, literally it just means vulval pain, and is something i have been told time and time again when they havent a clue what the problem is

kamals profile image
kamals in reply to chillijava

the doctors told me to stay away from the internet. It's definitely a scary place but what are you supposed to do if the medical profession isn't give you any answers?

Pkkpd5 profile image
Pkkpd5 in reply to kamals

Me too

willemine profile image
willemine in reply to Pkkpd5

I learned a lot because of internet i found specialist how could help me to get the right diagnose and people with simular discomfort it helped me tremendously Why do they think they are the ones with there 10 min appointments and mostly lack of empathy. I understand there is a risk to get hypochondriac by reading a lot of journals and diseases.

Pkkpd5 profile image
Pkkpd5 in reply to kamals

I have the same pain when lying on my back and sides too. I'm a 58 year old female from United States. I've been going to pelvic therapy for 6 months. I'm getting injections pudendal nerve next week. The first one helped. I still have pelvic issues and pain. Praying this injection helps.I also have pain under my butt cheeks.

Kim

kamals profile image
kamals in reply to Pkkpd5

I am still waiting for my nerve block appointment. I am sorry you are suffering, Kim.

AuntieH profile image
AuntieH in reply to Pkkpd5

Hi Kim, how did the 2nd nerve block go? Did it help?

Debra13 profile image
Debra13

I would go to a doctor for both the labral tears and the varicocele. My nephew has varicocele and describes symptoms of pressure and pain with heavy lifting and was told by his doctor not to lift heavy objects at all. Which kinda killed him cause he lifts weights, but does want children some day. He is only in his 20,s. They were at one point ruling out labral tears on my hips for the pelvic pain which has now been confirmed as pudendal neuralgia. So, yes it could be possible. You may want to go to an orthopedic doctor to see how bad those tears really are and a really good urologist. Hope that helps. Praying for us all. Deb.

kamals profile image
kamals in reply to Debra13

Thanks Deb, i am having the varicocele emobilized next month. In terms of the labral tears, I am waiting to see an orthopaedic surgeon, unfortunately, it's impossible to get that appointment quickly. My doctor has also sent me for an MRI Arthrogram to investigate the labral tears. I saw 5 urologists, couple of them were really good and they all said it wasn't a urological or prostate issue. It's so frustrating being tossed around like a hot potato from one medical practice to another and after a year, still nothing conclusive to account for the pain. Like your nephew, I used to lift weights as well. I was healthy and fit, this has ruined my life.

Debra13 profile image
Debra13

Yes, I understand completely. Pudendal neuralgia had basically destroyed my life too. I try to see the positive in this. lol it's really hard to find it. I'm still looking. Lol. I can say probably the only good situation about this is that I get to meet really nice people like you and others on this site. So far that's all I got. Lol. Still searching. I've also become a pretty good writer. I will keep praying for you. Deb. 🙏🙋🏻😉

kamals profile image
kamals in reply to Debra13

Thanks Deb for your prayers, I'll definitely do the same for you. I am sorry you have been suffering for so long. I am coming to year this week which just makes it tougher. I do enjoy your writing and grateful that you responded so promptly to my post. My concern is I am still struggling for a diagnosis. 😥

The symptoms are all over the place and contradictory so it makes it very challenging. My doctor is now treating the problems separately.

I am finding the myofascial release through pelvic pain physio is helping and physio therapist won't say whether it's PN but she ran some physical tests to elicit PN pain and wasn't able to she said it's not PNE for sure. I am lucky to have her, she's a leading expert, she teaches, speaks at seminars and can conferences and is extremely experienced in treating pelvic pain so I do trust her opinion over some of the doctors I have seen.

Susan1-2 profile image
Susan1-2

Hi Kamal, I am sorry you are in pain. Back in November I had surgery on the perineal branches of the Pudendal nerve. These nerves were involved in a previous surgery. When you have a nerve injury the muscles will protect the nerves and go into spasm. It is a domino affect. For me it started in the pelvis and then affected everything up and down my body. Just a suggestion, try going on an anti inflammatory diet. Like the SCD diet. This will keep your bowels happy. Get away from laxatives because this further changes the muscles responding normally. Maybe when the inflammation comes down you can pinpoint where the problem is. This diet is not easy but it is effective. After surgery I stuck to this diet and it has helped. Also, I work on belly breathing and posture. Stay away from lifting anything now. Any time you lift you will aggravate the area. I bought a pincher device to pick things off the floor . A picker/grabber device cheap on line.

I have my life back now.

kamals profile image
kamals in reply to Susan1-2

Hi Susan, thanks for the advice. I'll look up the SCD diet. My physio believes it's muscoskeletal and possibly neurological issue as well. Before I took that laxative my only problem was burning while urinating, and there was no uti upon doing urine tests. My theory is that burning pain led me to tighten my pelvic floor muscles and when I took the laxative, the muscles were too tight and didn't respond so the struggle between the laxative trying to empty my bowels and the tight muscles not loosening resulted in a host of new problems. 😞

Susan1-2 profile image
Susan1-2

I know that burning. It's terrible. I make the SCD pancakes in the morning. Just google them. Everything else I just eat Whole Foods. I was concerned about my nerves so I have been careful following more of s whole food limited sugar diet. I don't eat a lot of fruit now. Lemon in my food and lots of vegetables and small amount of meat. I will throw a chicken in the crock pot with herbs and garlic salt and pepper. Then make chicken soup with the bones. When my nerves were injured I though if a more practical approach. My surgeon moved the Nerves into the obteratur muscles. Now my healing I am very careful. Almost like a diabetic approach. Letting the Nerves calm down.

kamals profile image
kamals in reply to Susan1-2

I'll definitely try this. Anything at this point.

Susan1-2 profile image
Susan1-2

The perineal branches affected my urethral sphincter, outer anal sphincter, and puborectalis muscles.

kamals profile image
kamals in reply to Susan1-2

The problems I had with the external anal sphincter are now gone. It wasn't relaxing before but now it does.

Jenuk32 profile image
Jenuk32 in reply to Susan1-2

Hello Susan I am currently under diagnosis as I had an injury to my sitting bone which the obturator externus muscle attatches too it also attatches to the pelvic floor and I think I damaged the bit that attatches too pelvic floor as since my nerves have calmed down with amitriptaline I can feel the actual muscle pain more and when i tense and relax pelvic floor on the right side I can feel this soreness or tightness of some sort as though the muscle is healing or is too tight I too have had sphincter twitches which can really hurt sometimes I’ve had it 4 months worse time in my life! It’s gone through so many different stages throbbing inflammation stage then severe nerve tingling then soreness but now my nerves have relaxed I feel like the muscle can heal properly as I was tensing my pelvic floor so much through pain. Can you relate to any of this??

AuntieH profile image
AuntieH in reply to Jenuk32

Hi Jenuk32, I also have pain at my sit bone. Have you found anything that relieves it? Where are you located?

Jenuk32 profile image
Jenuk32 in reply to AuntieH

My sit bone pain has got better but I have a torn pelvic floor muscle that is healing and caused radiating pain to sit bone

Susan1-2 profile image
Susan1-2

I realize after reading so many posts we are the specialists.

kamals profile image
kamals in reply to Susan1-2

I agree, I get more answers researching opposed to seeing so called doctors

Susan1-2 profile image
Susan1-2

I know your frustration. Try the diet. Fill up on more fat like avacado, nuts(not peanuts), and coconut oil while cooking. You don't want to be hungry. I buy those packages of frozen vegetables and always have cooked meats ready and available or eggs. I am on no medication. Not even Tylenol or Advil. You want the area to calm down. I play soundscapes in my house and remember to let my stomach relax. When you consciously do this for a while you won't tense those muscles. At first I would say this to myself numerous times a day. Now I remind myself a couple times a day. This is a lifestyle change when this disaster strikes. I was athletic prior to all of this . Skiing and skating winter sport, running and yoga, tough Mudder training and gymnastics mom's group... Now I will thank my lucky stars I have found a way out of this mess that was done to me. I will meditate more, move forward in a positive way and do what I can do and that's it .

kamals profile image
kamals in reply to Susan1-2

I have trying to do Yoga and meditate. That's what my physio always tells me. I cancelled my gym membership, no point in keep paying if I can't go. I have little kids, 8 and 5, they are a source of so much joy and so much stress at the same time. Lol. At the moment, I am taking Metamucil daily, for breakfast I have a smoothie with berries, coconut water, kale and half a banana. Just before Christmas I bought myself a Vitamix blender and I pretty much use it more than any other appliance. Every other day I make fresh juice with a blend of beets, celery, carrots, apples, ginger root, oranges. I also drink fresh grapefruit juice every other day. I am also taking omega 3 fish oils daily. I am trying to eliminate carbs. I have pretty much stopped drinking altogether, no beer, wine or any of the hard stuff. I cut out pasta too, I make pasta out of zuzzhini. My only vice is coffee.. I do drink one cup a day and trying to find a way to eliminate it completely.

Jenuk32 profile image
Jenuk32 in reply to kamals

I currently take omega 3 too as good for muscle repair and strength also I was told tumeric is a natural anti inflammatory and I take vitamin b5 complex and b12 as they are supposed to promote healthy nerves and repair!! I’ll try anything. But yes relaxing the area is key to recovery hard I know when your in pain

Susan1-2 profile image
Susan1-2

Be careful with the yoga. Planks and chatarongas will put pressure on the pelvis. The yoga I do now is just deep breathing. I do postural exercises as I consciously relax my abdomen.

Prior to surgery I was basically on a liquid diet. When you switch over to the diet you will be able to get off the Metamucil.

Getting rid of the grains that cause inflammation. I eat rice, spaghetti squash, sweet potato, butternut squash, and lots of greens( broccoli, spinach, zucchini, etc). Almond butter, avocado, olive oil, and coconut oil. Eggs, beef, pork, fish, and chicken. Rendered fat from pork for oil. Which adds flavor to your pancakes.

Almond meal for the pancakes. I buy seaweed snacks instead of chips or I make kale chips.

I take vitamin D , fish oil supplement, and a multivitamin.

kamals profile image
kamals in reply to Susan1-2

Thanks for the warning Susan. I'll try to be careful. As I said, I can't even shovel snow or push a snow blower without feeling pain in my buttocks. And to think I was going to the gym 5 times a week doing weights. 🙁

I may start vitamin D. Just waiting for the MRI Arthrogram to see if the labral tears are a Contributor to the pain. Big part of dealing with this is getting over the mental hurdles. Knowing and accepting your life has changed is one of the toughest things to deal with.

Rocky68 profile image
Rocky68

I have similar problems with pressure, tightening of buttock area as well as anal pressure. Tried lots of Drs and had standard tests. They diagnosed me with Levator Ani Syndrome and spontaneous Pudental Neuralgia. I am currently seeing a Pain Management Dr. I have had two unsuccessful PN blocks.

I only experience pain while sitting or lying down. I currently take 150mg of Lyrica which helps with tightening and burning. I could not take a larger dose without side effects. I found heavy lifting or strenuous exercise makes pain worse. I did try Physiotherapy and it did not help. Lyrica, tramadol50 for sacral pain and .5 Clonazepam so I can sleep at night. You might want to consider a Pain Management Specialist to alleviate some of the problems. I just try to manage PN. Rocky 68

kamals profile image
kamals in reply to Rocky68

I am waiting for a referral to a pain management specialist. Hate the idea of being on meds for life. Before all of this I rarely took a ln Advil or a Tylenol. I don't have anal pain but I feel pain in my sitz bones the moment I sit down. Soft surfaces aren't bad but the hard surfaces are tough. Park benches, airports, ball games are tough.

prinx05 profile image
prinx05 in reply to Rocky68

Rocky if your pain is in the buttocks just outside of your sits bone, mainly when sitting and lying down it is unlikely that it is pudendal nerve. It is more likely to be the posterior femoral cutaneous nerve and its inferior branch. The pudendal nerve does not go to the lower buttocks.

The levator ani syndrome like the pelvic syndrome seems to be diagnoses thrown around when the health practitioner does not know exactly what the origin of the problem. If its the above nerve this can be diagnosed by nerve block. Because you also have anal pressure then it might include pudendal but it sound like the buttock pain is the most prominent symptom. You have to find someone who can do posterior femoral nerve block without steroids and 2 weeks later do a pudendal block.

prinx

prinx05 profile image
prinx05 in reply to Rocky68

Rocky please see reply below.

Rocky if your pain is in the buttocks just outside of your sits bone, mainly when sitting and lying down it is unlikely that it is pudendal nerve. It is more likely to be the posterior femoral cutaneous nerve and its inferior branch. The pudendal nerve does not go to the lower buttocks.

The levator ani syndrome like the pelvic syndrome seems to be diagnoses thrown around when the health practitioner does not know exactly what the origin of the problem. If its the above nerve this can be diagnosed by nerve block. Because you also have anal pressure then it might include pudendal but it sound like the buttock pain is the most prominent symptom. You have to find someone who can do posterior femoral nerve block without steroids and 2 weeks later do a pudendal block.

prinx

Reply

Rocky68 profile image
Rocky68 in reply to prinx05

Thank you for your reply. This is something I'll certainly check into. Do you have this particular problem?Rocky68

prinx05 profile image
prinx05 in reply to Rocky68

Yes and I have studied it for over a year that is why I am disappointed in the over diagnosis of levator ani syndrome and chronic pelvic syndrome.

For some people pelvic pt can be helpful.

I plan on having the block procedures to make a more definitive diagnosis.

If your udendal nerve is blocked and your pain persists then you know your problem is not pudendal.

I had pelvic PT for long periods and several trials of Botox which did not help.

Originally I believe that I injured my buttock about 40 years ago and over time left buttock pain converted from intermittent episodes to now continuous. At one time it was only sitting and now it is also lying down. Fortunately lorazepam,togabapentin and advil helps me sleep at night.

Check to see if the pain in the buttocks is lower and its relationship to the sits bone. If it just outside and low then there is a chance it is the cluneal nerve which is the inferior branch of the posterior femoral cutaneous nerve.

Rocky68 profile image
Rocky68 in reply to prinx05

I experience spasms right below rectal area that radiates to back of right leg. It's not any type shooting pain just burning, annoying spasms and pressure. I have had two unsuccessful Pudental blocks and physiotherapy which was no help. I kniw nerve problems are difficult to diagnose but so tired of going to so many Drs. Did any Dr suggest this may be your problem? I live in North Carolina and am at loss as to which Dr I should see next. Rocky68

prinx05 profile image
prinx05 in reply to Rocky68

You may need to find a pain specialist who can use ultrasound guided blocks to do the tests I mentioned regarding a posterior femoral cutaneous(PFCN) nerve block.

If you live near a university medical center you may try the

Neurosurgery department and ask for a Dr. that is interested in peripheral nerve surgery. Tell this Dr. where your pain is on the buttocks and mention that you know that the nerve supplying that area may be the PFCN. Ask if he or she can send you to someone who can prove the diagnosis by seeing if the pain is relieved by blocking the PFCN.

kamals profile image
kamals in reply to prinx05

Hi Prinx05

I found yours posts to really informative. I have sitz bone pain while sitting and it radiates into perineum. Also, I find that if I lift anything, even a gallon of milk, I start feeling s burning pain. Pain is in the buttocks and sacral region reading into the groin. It's a burning pain. I am awaiting a oudendal nerve block and I really don't think it's my ludendal nerve though. I found your post to be more fitting with my problem. What are your thoughts? I too am sick and tired of doctors.

prinx05 profile image
prinx05 in reply to kamals

I think you can follow the same above comments. The PFCN also has a perineal branch which goes to the perineum. you really need to have the 2 blocks without steroids about 2-3 weeks apart to see if you have both nerve involvement . Once you find the point of nerve pressure then a definitive treatment can be planned. Which may be: a steroid injection with a block. If that is not successful then possibly surgery to remove a neuroma which may be caused by a past nerve injury. There are a few things to be considered before surgery but with that in mind this has to be done by a trained peripheral nerve surgeon.

kamals profile image
kamals

I know we've talked about the physical toll this had taken on us but what about the emtional toll? I am professionally employed in the information technology sector. I have beautiful kids and I was doing very well in my life. The kind of others would envy but since I got sick, it's a real mental struggle. some days it's hard to get through work, sometimes it's the physical pain and others it's the mental challenge of dealing with this. There was a time when I didn't want to live anymore. I have gotten past that. I just worry that I will continue to get worse.

Sandra2468 profile image
Sandra2468

Hopefully Kamal it is comforting that you are not alone.

I have pain symptoms that do not add up and have reluctantly succumbed to Ventral Rectory surgery to lift the anal end.

Different pain issues to you, chronic low back pain on waking since 2004 leading to anal discomfort and some faecal urgency and incomplete evacuation and worse still pain on sitting deep in the anal canal.

I also cannot imagine living like this but a complicated history of some pelvic tumours near the sciatic nerve may be influencing this but these lumps have shown stability for over 10 years. They cannot be biopsied because of their proximity to the sciatic nerve and they appear stable but the scans show sacral nerve involvement.

My life is a continual struggle of waking with low back pain, and continual anal pain when sitting.

And listening to other stories on this forum gives me the strength to go on.

We are all there for each other and remember you are not alone.

Best wishes,

Sandra

Susan1-2 profile image
Susan1-2

Kamal I sent this out in another post. When you are sitting on the toilet and have to go put one hand on the seat and lean forward so you don't push your legs against the toilet seat . I had that sitz bone area burning pain. You don't want to make things worse. When you are at work on every break get a mat lay diwn on the floor put your legs up to the knee on a chair and take the pressure of your pelvis. Do deep breathing . When you breath in your stomach should rise and then lower on out breath. Purchase some canned Salmon and have on hand. Have a small amount during the day. More omegas so your digestion is good. I also started more vitamin D. I had been taking it on and off. I stood at my job for 8 months. It didn't make a difference for me. It was better laying down. In the end even laying down was painful. At that point I found a surgeon. No one wants to go into surgery but for me it was going on disability or surgery. A girl that works with me will have surgery for labral tear next month. I will let you know the outcome. Purchase grabber/picker on line to pick up laundry and other stuff off the floor. If you have a dresser move your clothes to the top drawers. Don't bend at the waist for anything. Try not to let the kids hang on you. Lifting more than 5 pounds now should be avoided. Let the kids carry the groceries and push the shopping cart. I am almost three months post surgery and I am avoiding lifting anything. A heavy cast iron fry pan or heavy laundry detergent I don't lift. You are right about having difficulty accepting what has happened. My recovery from surgery is better because I accepted I could not physically do anything. I almost ended up in Divoce court because my spouse could not understand. I told him straight out I need to help myself and he had to take over everything. My pain got so bad I could not walk up an incline. I was getting plantar fascitis, Achilles tendinitis, hamstring pull in my right leg, neck pain and more because I walked backwards up the staircase. So, looking back I should have avoided climbing any stairs. I had a kneeling chair for work I would use sparingly. I stopped driving unless going to work. My drive to work was 30 minutes. Half way I would get out of the car and stand up. I had to decide the last few weeks before surgery what driving made sense. Physiotherapy didn't help me. When the therapist would release some trigger points they would just come back again. One thing I did often at night when the pain increased is use an ice pack on different areas of my body. I would get my brain to stop focusing on the pain and focus on a different part of the body. So, if I put the ice pack in my neck I would focus on my neck. Like meditation. Use a couple of cold cans and roll your feet on them in bed. It would break up the pain cycle. Going to the gym and just floating in the pool takes the pressure off.

It becomes a domino effect. You walk differently in pain.

Sandra you said tumors? They are not Tarlov Cysts? My friend just had Tarlov Cysts surgery. She had 7 Cysts compressing the nerves. She had the same pain as me.

I guess there are so many different causes to the nerve pain.

kamals profile image
kamals in reply to Susan1-2

Hi Susan,

Thanks for your advice, I will definitely make the necessary lifestyle changes. You mentioned Tarlov Cysts? I have one cyst on the 7mm-10mm on the exiting region of my right side S2 nerve. Where did you friend have surgery? Was it by Dr. Feiganbaum in Dallas? Has she noticed a change in her pain?

THanks,

Kamal

kamals profile image
kamals

I just had some thoughts related to specific pain while sitting. My pelvic floor physio has been doing myofascial release internally on the levator ani muscle. My pain while sitting is in the area of the levator ani muscle. Did any one ever get diagnosed with problems with the levator ani muscle tear or other problems? I have pain in the coccyx area, and it's a struggle to sit on hard surfaces. To me, the tear theory does make a lot of sense but not sure if anyone else can tie this type of pain to their levator ani muscles.

Chalking up the problems just to tight muscle in the pelvis has never really sat well with me. My problems started right after finishing cipro for prostatitis that I did not have. I was put on a harsh laxative that resulted in muscle spasming and cramping while trying to move my bowels and I remember Thst specific event that triggered all the pain. There was a lot of straining and pushing as I sat on the toilet. It's pain I had never endured in my entire Iife. I remembered being curled up in a ball after I had finished.

Susan1-2 profile image
Susan1-2

Look at research on the levator ani muscles(puborectalis), outer anal sphincter, and the perineal branch of the Pudendal Nerve . I had severe levator and pain for 20 minutes. I thought I would die. I layed down on the floor with my leg up and I had my daughter push my leg towards my head . It felt like a tight rope pulling. Horrid! I read later about the condition. Many people have it often and have to use a warm enema to stop it. Mymuscle problems were like dominoes. One by one went into spasm. Groin, coccyx, illiocoggysic(spelling wrong), hamstring pull, and more. Nightmare. Did you have a problem with urethral sphincter? Again perineal branch

Not an expert but more knowledgeable than average doctor on this subject

kamals profile image
kamals in reply to Susan1-2

Hi Susan,

I didn't see this post, my apologies. I had no problems with the urethral sphincter. I had no issues with not being able to control my ability to urinate. I am not sure if you can relate, being a woman but I have a weird spasm of the penis. At times, it feels like a muscle is literally pulling my penis into the pelvic. It used to be painful and now it's just a nuisance. At the risk of oversharing, I have normal erections and have no pain with ejaculation or sexual activity. What should the symptoms be if I had an issue with the levator ani muscles?

Susan1-2 profile image
Susan1-2

Kamals, just a suggestion. I would fly to Dr. Dellon in Maryland. Stop guessing at this and find out what Nerve is the problem. Go for a consultation. Get examined by a peripheral nerve surgeon. There are a few Nerves very closely symptom related. At least you will know for sure. If you can't get rid of the pain after physiotherapy, resting, and pain medication you will have another option. You will have to take work off if you opt for surgery. I had a Bilateral surgery. It was 7 weeks before I could return to work. But I was happier after 5 1/2 weeks and I could sit after surgery. The nerve blocks are a smart idea. Then you can tell the surgeon what gave you relief. Nerve blocks first. You may have a stretch injury to the nerve. Not sure how they handle that. Go on dellon.com and read the pain solution books. You can educate yourself before seeing more doctors. It explains all about the nerves. I read them 20 times no joke. Also cross reference them with other articles. Gave me a piece of mind. The thing that ticks me off the most is the previous surgery I had that caused this Mess. I am still learning as I heal.

kamals profile image
kamals in reply to Susan1-2

Hi Susan, I will look into this.

Sorry for being AWOL the last few days, been busy with the family, work and of course, the chronic pain. I just saw my doctor this evening and he is requesting a pelvic MRI with a specific request to assess the levator ani muscle. He wants to get this checked out first before moving forward. He was telling me that he spoke to a general surgeon friend of his and he was saying that if a tear is found, they are not sure who would reattach the muscle.

Also, I have a varicocele emobilization on Monday.

Seeing the above general surgeon next week, he's going to an exploratory laparascopy of the groin area to see if he can see any abnormalities.

Seeing a physiatrist on March 22nd for assessment of the labral tears.

Do you know if it's easy to detect tears of the levator ani muscle on an MRI? If the muscle was torn, what would be the symptoms?

Thanks,

Kamal

kamals profile image
kamals in reply to Susan1-2

Hi Susan,

I looked in to Dr. Dellon's practice and he seems to be the best suited to deal with my problems. I am going to start the process tomorrow but should I am going to get at least the pudendal nerve block done here to see if it helps diagnose the problem. My worst pain is with sitting and it seems like the pain in the butt is in the distribution of the perineal nerve. Lucky for me, Maryland isn't far. I am in Toronto, Canada.

Do you know how much the consult and surgery cost to kill the peripheral nerves like the perineal nerve? A ballpark figure would be okay. If it's easier, you can private message me.

Thanks again for your help, you have given me such valuable info. It's info that I haven't received from so called health care professionals. I am extremely grateful to you

Susan1-2 profile image
Susan1-2

I don't know Kamal. I can tell you for sure they can not see perineal branch of Pudendal Nerve on the MRI. I had vaginal and rectal spasms from this nerve branch. Even after surgery if I do too much I will start to get a vaginal spasm because of where the Nerves were moved. Nerves are tricky. It takes time for them to calm down. The muscle will spasm in response to pain from the nerves. So after working 4 days I will take extra time and lay down at certain times so the muscles won't act up. It would probably be the same if it was your shoulder with scar tissue and injured Nerves. The muscles would react. The difference for me is I don't have sitting pain or pain going down my legs or increasing pain during the day because I had surgery. My injured nerves were stuck in scar tissue and every time I moved they seared. Now they are in the obteratur muscles where they can't regrow and cause more chaos. Also, it felt like I was sitting on a ball because of the injured nerves. All very strange. My pain also started in the groin and I had lower sacral pain. I went to a chiropractor and he couldn't figure it out. I think it was just the start of the storm. The first set of muscles going into spasm to protect injury and then all the other muscles followed like dominoes.

kamals profile image
kamals in reply to Susan1-2

Hi Susan, all great information...thanks for sharing. I had the MRN and I am hoping thst would've have showed the perineal branch of the pudendal nerve. I don't have pain as if I am sitting on a ball. My pain is in the sacral area, worse when I am lying down or when I sort of slouch back in a chair. If I am sitting upright with perfect posture, I am fine. It's only when I slouch and the weight shifts to the area adjacent to the sacrum. Assuming a pudendal nerve block help diagnose.

kamals profile image
kamals in reply to kamals

I have a varicocele emobilization tomorrow and I am trying to get the labral tears surgically repaired. Next steps if nothing comes of these two procedures would be to see a peripheral nerve surgeon. In the interim, I believe I would've had the nerve block to which would help in diagnosing the problem.

Susan1-2 profile image
Susan1-2

Kamal go to jasonattamon.com. I noticed a 71 year old gentleman said he took Cipro for what he thought was a possible urinaty tract infection and then sat for 9 hours with difficulty getting comfortable. Seems similar to your story. Maybe they Cipro caused it.

kamals profile image
kamals in reply to Susan1-2

I checked the sight but can't find this specific reference. I am part of a male only fluroquinolone toxicity group on Facebook. It's for men who have been affected by Cipro and a recurring theme is the inability to sit on hard surfaces, it universally affects men who have taken Cipro. We are all trying to determine the underlying cause. For example, did Cipro damage nerves or muscles/tissues/ tendons in the pelvis that caused these problems? We all believe Cipro contributed to or problems but don't know where the damage is.

Susan1-2 profile image
Susan1-2

I looked back at the site. It is a blog on that web site. There are two people who took Cipro.

kamals profile image
kamals

I had the varicocele emobilization. The doctor couldn't find it today so couldn't emobilize it. Well, back to the drawing board.

Mate, those aren't symptoms from the pudendal nerve.... forget that. Those parts you mention are supplied by the ilioinguinal nerves: Perineum skin, testes/scrotum, and inner thigh. The nerve roots are in the middle of the back (L1), higher up than pudendal roots which are in the sacral area.

What's your latest? I've had very similar symptoms for a number of years. Happy to share what I've learned so far.

kamals profile image
kamals in reply to

Hi, my little symptoms are all listed in my original post and it's way too many to list off all again not much has changed since then. I still have all the symptoms. I am attacking one problem at a time as it's found. One of the problems was a scrotal tingling which I suspect was a varicocele. I still have severe pain with sitting and pain seems to be more in the but ox and back of the legleg and in sort of a part of the levator ani muscle area. I'm waiting for an MRI arthrogram and also a separate MRI of the sacral region and the coccyx. I have an appointment with a general surgeon on Monday and he is going to look into the groin Laura pelvic pain to see if it's a hernia that has gone undiagnosed and potential he do an exploratory laparoscopy. I'm not sure if it's against a former rules to share personal email but you can email me at Cam_sharma@yahoo.ca or private message me.

kamals profile image
kamals in reply to

Hey bro, I had a lumbar MRI few months earlier and it was normal. I also have scrotal pain starting from lower abdomen and pelvis. Shoot me an email or private message me and we can talk more. All my symptoms are in my original post so have a look.

Susan1-2 profile image
Susan1-2

Good to hear Kamals someone else can help. Thanks socirul!

kamals profile image
kamals in reply to Susan1-2

Hi Susan,

Just a big fishing expedition I am afraid until a clear and certain diagnosis is given. Just don't want to leave any stone unturned. While it's overwhelming, I don't want to dismiss anything. 😐

kamals profile image
kamals

Hi Everyone,

So I met with the general surgeon on Monday and wanted to update you all on my evolving situation. He did dermatome mapping and deemed the pain to be in the L1 L2 distribution. Since the Lumbar spine MRI was negative he strongly feels there is a correlation between the labral tears and my symptoms. He is willing to do an exploratory laparoscopy to see if there's a hernia that is being overlooked but he would like me to see an orthopedic surgeon specializing in hips first to have the labral tears checked out. My doctor sent a req in for an Arthrogram with MRI on both hips. His feeling is that the pain from the hips is causing other pain as it's making me tighten my pelvic floor muscles. I am now awaiting this MRI arthrogram and the appointment with a orthopedic surgeon. Incidentally, I came across a post where another guy had same symptoms along with labral tears and getting the surgery to fix the tears got rid of all of the other problems. I am seeing a Physiatrist on Wednesday. Hopefully, that'll further cement my tears as the cause.

In terms of PN, I am not convinced I don't have PN issues and the fact that the MRN was normal further eliminates it as a source and somewhat puts my mind at ease. I hope some of you may find value in this post/thread. Hopefully those with pelvic floor issues or PN issues would consider a hip pathology as a source of their pain. If anyone would like to discuss further, please feel free to email me.

Lilzylilz profile image
Lilzylilz in reply to kamals

How did you end up with thw ortho regarding the labral tears?

I have similar symptoms to you and i have bilateral labral tears and fai impingement.

After a bad fall off a ladder (8 ft) and repairing a T12 fracture, I had intermittent pain in hip and also pudenal nerve issues. After 1.5 years of PT and various blocks and steriod injections, I was finally diagnosed with a labral tear in right hip. That was repaired arthroscopically 7 months ago. My surgeon said area was very inflammed. It is possible I have a tear on left hip but orthopedist wants to wait until I am 12 months post op to evaluate if I am still having issues. I am getting pelvic and hip PT to keep muscles from spasming. I am also being treated by a pelvic pain medicine MD. I'm taking gabapentin for nerve pain and cyclobenzaprine for muscle spasms. I tried to go off cyclobenzaprine recently but found my muscles seized up so I am back on it until I am healed more. I also have taken amitryptyline for many years for mild depression and know that this helps with pain/spasms also. And I take Mobic for inflammation in hip. I still have to sit on a cushion. I am, though, able to slowly walk 0.5-1 mile a day and also I swim daily with small flutter kicks, light gardening and do a variety of stretching and strengthening exercises as directed by my PT. The healing is very slow going. Gradually some of my bladder/rectal/sexual symptoms caused by an irritated pudenal nerve are improving. I'm definitely stronger in my hips also. My orthopedist said that it will take 12+ months to fully heal from labral tear surgery. My PT and pelvic pain doctor said the nerve will then need to continue to heal once the hip is healed. Most everyone thinks that my hip was causing the pelvic issues and so do I. My orthopedist though wouldn't make any promises regarding my nerve issues. He said he could fix my hip issues. I went to the top hip surgeon in the Northwest. I am fortunate that I'm currently not working so I lay down/rest when I need to. It has been hard to limit what I do physically as I was previously very active. My husband doesn't understand and my health issues have caused marital issues. But we are trying to work things out to save our 36-year marriage. I try to take one day at a time. I am trying to meditate. I find floating in the pool is helpful. Just wanted to share

AuntieH profile image
AuntieH in reply to

This may be my problem. How are you doing today?

Mohammed1985 profile image
Mohammed1985

Yes thy are linked

pamelamorrisonpt.com/specif...

Ben2159636 profile image
Ben2159636

I don't know if I'm too late to the party or if you figured out your issues but the labral tears will cause all of the issues you are having.

The moment they showed up in your MRI they should have booked a surgery for you to fix your hips.

Ben2159636 profile image
Ben2159636

If any part of your hips are not functioning the way they need to then the pelvic floor muscles and going to work harder to support the hips.

I have been suffering from all the same pelvic concerns you have for not as long a. Of time I found out that I have hip dysplasia FAI and labral tears. The these are all under the pelvic floor muscles.

Boingi200 profile image
Boingi200

I can really feel compassion I’m female but have the same

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