Posterior Femoral Cutaneous Nerve

Male pelvic pain, prostatitis, IC
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NoMoPain
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Posterior Femoral Cutaneous Nerve

Post by NoMoPain »

Hi Everybody,

After about 4 years of being virtually symptom free I started to have some problems a few months ago (the wand did not seem to fix this). I was fortunate enough to get in to see Rhonda Kotorinos (world renowned PT).

Here are some of the key points from this whole experience:
  1. Rhonda said that my pelvic floor muscles are just fine. The problem I have is due to the Posterior Femoral Cutaneous Nerve (call it PFCN for short).
  2. The PFCN nerve runs down the back of the leg and into the perineum area.
  3. Rhonda said the problem is caused by too much sitting from my job (cuts off blood supply to nerve, nerve gets bothered). Stress can also contribute by constricting blood vessels, etc.
  4. Five to six years ago I had these problems PLUS I had a whole host of pelvic floor muscle problems. Now I just seem to have the PFCN problem.
I am following Rhonda's protocol which includes:
  1. I got a workstation that gives me the option to work standing up (I lied to everybody at work and told them I had an injured hamstring).
  2. Lots of exercise which increases blood flow to nerve. After I do cardio work most of the time I am pain free again for hours.
  3. ICE - this is new for me. Rhonda highly recommends this and so do I. Numbs the nerve and after you remove the ice the blood flow increases a lot which helps. 20 minutes of ice every hour or so. On average I would say I ice about twice a day. Like I said this is new news for me as my PT 5 years ago never mentioned how helpful this could be - Rhonda said ice is the way to go and not to use heat (wow on this one!).
  4. Doing lots of Byron Katie work for stress reduction. I have to admit when the pain came back I freaked out big time which of course doubled my suffering. I seem to be calming down a lot more now but I still have work to do here.
  5. Skin rolling to loosen the tissue surrounding the nerve.
I wish I could say I am pain free again but I am not. The only good news is that I am not in pain all the time and my pain levels have been fairly low when I follow the above protocol -
I can sleep through night again which I could not for a few weeks at first.

NoMoPain.
Age: 41 | Onset Age: 24 | Symptoms: You name it, I had it. | Helped By: Wand, Theracane, Cognitive Enquiry (Byron Katie) Stretches, The right kind of excercise | Worsened By: Stress, The wrong kind of excercise,
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carld
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Re: Posterior Femoral Cutaneous Nerve

Post by carld »

As we know, flares can happen, and we can get out of them as well... You're all over it to knock it out..

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Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
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Re: Posterior Femoral Cutaneous Nerve

Post by webslave »

First time I have heard of any of this. Please keep us updated.
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NoMoPain
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Re: Posterior Femoral Cutaneous Nerve

Post by NoMoPain »

According to Rhonda this nerve is usually the cause of our sitting problems. She said the Pudendal nerve is usually not the cause because it is buried too deep, whereas this nerve is fairly close to the surface of the skin.

I did not realize I had this problem along with my pelvic floor problems from 6 years ago or so, but my older PT said I did have this problem back then.

I am doing my best with life but it ain't easy. Two small kids to raise and a boss who I don't like at all. I took a new job about a year ago and I regret it. I took it at the same time my daughter was born, and I don't really connect with the people and the environment sucks. I am trying to go back to my old job where I had friends, a way nicer boss, and the ability to work at home when I needed to (which is really helpful when you are having symptoms).

Challenging to find peace and solace but I will keep trying - Prayer, Meditation, Byron Katie, Excercise, and talking to you guys and my other friends is all very helpful.

NoMoPain.
Age: 41 | Onset Age: 24 | Symptoms: You name it, I had it. | Helped By: Wand, Theracane, Cognitive Enquiry (Byron Katie) Stretches, The right kind of excercise | Worsened By: Stress, The wrong kind of excercise,
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Re: Posterior Femoral Cutaneous Nerve

Post by davioj »

Dear nomopain,
Welcome back, I learned a lot from your previous posts. I guess unfortunately flares are to be expected, it would have been a miracle if it would have stayed away forever without some flare now and then. Although this new complaint could be a more localized nerve irritation problem and not chronic prostatitis / chronic pelvic pain syndrome per se. Maybe it could help to use Elavil for this. Try not to catastrophize and I am sure you will get back to your symptom free state quickly. Keep us posted on your progress. Good luck!

By the way I have been using a seat cushion called the discosit. It makes it impossible to sit still and therefore reduces the build-up of tension at one place during sitting. It might be good for your localized nerve problem.
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34 yrs old. Now rectal pain, some suprabic discomfort an occasional urgency. Still trying to figure out what helps. Episode of frequency in 2008 but this dissapeared for a year.
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Re: Posterior Femoral Cutaneous Nerve

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NoMoPain
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Re: Posterior Femoral Cutaneous Nerve

Post by NoMoPain »

Thanks both of you for your comments.

What I find interesting is that on the weekends I do not sit much at all and the pain level generally goes to a level 0 to 1, never higher than 2 (this morning on Sunday I feel no pain really at all).

When the work week starts however I generally kick up to 2, 3 and sometimes 4 because I am sitting usually 3 to 5 hours per day (I have a stand up workstation but I still have to drive to work and sit some of the time at work like in meetings etc..).

The pain levels I had 5 to 6 years ago were always there at between a 4 and 7. I really think the stand up workstation is the way to go for me, and without it I don't see that I would be able to continue working because constant sitting on my ass all day would kick the pain up to much higher levels - at least that is just the way my body is at this point in time.

NoMopain
Age: 41 | Onset Age: 24 | Symptoms: You name it, I had it. | Helped By: Wand, Theracane, Cognitive Enquiry (Byron Katie) Stretches, The right kind of excercise | Worsened By: Stress, The wrong kind of excercise,
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Re: Posterior Femoral Cutaneous Nerve

Post by webslave »

Remember that when you sit, you are folding your legs and abdomen in on the contents of your pelvis. This pressure can make pain worse, just like squeezing a cut makes it more painful (and more inflamed).
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DMcU
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Re: Posterior Femoral Cutaneous Nerve

Post by DMcU »

This is interesting and one muscle I see mentioned regularly with this condition is psoas. This muscle is a problematic one in my case. I have continual pain running down the hip flexors and when my PT palpates psoas it always recreates this pain. I find that when I sit forward the pain and discomfort reduces. (I noticed this when I was on a bus and in pain due to sitting and when I lent forward the pain reduced a lot). There are seats that can help with this, like this ergonomic knee chair.

I am currently trying one like it and will report in due time on its effectiveness. They are to allow you to sit forward and place weight on the shins and knees rather than the sit bones.

Did or do you have any problems with psoas?
It can be hard to access it and to treat by yourself.

I read a bit on the condition Lateral Femoral Cutaneous Nerve Entrapment as opposed to Posterior and this seems to be far more regular. It says that symptoms usually improve with sitting and that symptoms usually are unilateral but may be bilateral in rare cases. Do you feel symptoms are more concentrated to one side or both?
Age: 25 Onset: 23. | Symptoms: Burning in urethra, urinary frequency/urgency, 'golf ball' in butt syndrome, muscle tension form pelvis to calves, constipation, IBS, testicular pain/inflam, bladder pain when nearly full, difficulty relaxing muscles (coccygeal, levator ani etc.), pain and muscles tension in anus/perineum. Helped by: quercetin, relaxation, baths, heat packs applied to perineum. Worsened by: Stress, driving, sitting, jogging, caffeine etc.
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Re: Posterior Femoral Cutaneous Nerve

Post by flump »

hey chuck,

It's Andy here :) , sorry to hear of your problems

Drop me a email at [email protected] I have your tapes and need to mail them back to you and I can give you a update be good to catch up.

Regards,
Andy
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NoMoPain
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Re: Posterior Femoral Cutaneous Nerve

Post by NoMoPain »

Hi Andy,

I just sent you an email. Great to hear from you!

Good talking to all you guys and I will consider the option of Elavil. I will try to be drug free at first but it is nice to know there is another option.

By the way Rhonda Kotorinos recommends ice for pelvic pain also. I just want to pass that on to everyone since if they are in bad pain, why not give it a try? It works very well for me. My older PT never told me about ice, but Rhonda recommends it.

Curious to hear what everyone says about the ice.

NoMo.
Age: 41 | Onset Age: 24 | Symptoms: You name it, I had it. | Helped By: Wand, Theracane, Cognitive Enquiry (Byron Katie) Stretches, The right kind of excercise | Worsened By: Stress, The wrong kind of excercise,
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Re: Posterior Femoral Cutaneous Nerve

Post by webslave »

I find ice useful for when the herniated disc in my spine plays up, because it results in inflamed nerve roots emerging from the spine. Ice is good for inflamed nerves, if you have them. It's not good for conditions involving muscular tension. Note that there are a few studies linking chronic prostatitis / chronic pelvic pain syndrome to cold weather, and heat (e.g. a sitz bath) is a time-honoured treatment for our condition.

If others find it useful, I'll be surprised. How exactly do you use it?
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Re: Posterior Femoral Cutaneous Nerve

Post by Jay »

When experiencing particularly nerve-like pains (you know the kind I have, Mark), I have sometimes applied an ice pack to my perineum. This is an uncommon practice, used perhaps once or twice every few months, but it can be beneficial. Typically, a hot bath is far more reliable for most variations of my pain.
I am not a physician. This is not medical advice. Consult your doctor!

Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.
NoMoPain
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Re: Posterior Femoral Cutaneous Nerve

Post by NoMoPain »

It is important to understand a few key points about this:

1. Rhonda Kotarinos recommends using ice instead of heat for both nerve and pelvic floor muscle problems. For those who do not know, Rhonda is about the best there is in the world of PT's treating pelvic floor pain. People come from all around the world to see Rhonda. I heard that she is the one that was behind Dr Wise's recovery as she instructed Dr Weiss what to do with the treatment.

2. According to Rhonda the rationale for using ice instead of heat is: a) Ice will slow down the nerve impulses of pain - in other words it is a very strong yet natural analgesic. I can attest to this. b) initially ice acts to reduce the blood flow by constricting the blood vessels, however, shortly after the ice is removed the blood vessels open and the tissue is flooded with blood - the increase in blood supply is what is good. Put your hand in snow for a while and then come inside and see the redness from the increased blood flow.

3. According to Rhonda although heat opens blood vessels initially, when it is removed the blood vessels will again close off but even more so - this is the opposite pattern of ice. Again according to Rhonda you get more Net blood flow using ice than you do using heat. In other words if we measure total blood flow using both sources we would get more using ice than heat - again over a period of time not just initially when the heat or ice packs are applied (obviously there is greater blood flow with the heat over the ice but only for the time that the heat or ice is being applied and not over the longer term.

4. I too had a hard time believing this when Rhonda first told me about it - it seems totally counter-intuitive. I second guessed many things Rhonda told me at first because it seemed to contradict my beliefs. For example, I thought the nerve thing I have was really due to a hamstring muscle - I was wrong and found out the hard way after I did deep tissue massage to the hamstrings and the resulting pain was very bad - Rhonda said all I did was piss off the nerve since it is between the skin and the hamstring muscle. In other words her advice and ideas seem very consistent with my experiences - not to mention all the good PT's in this field are usually very well aware of her. I have gotten to the point where I just take her advice without any second guessing at all and it seems to be working.

5. Again per Rhonda the ice would be applied around the perineum area for about 20 to 25 minutes on and about an hour off. You can do this pattern as many times as you like throughout the day. So you are decreasing nerve sensitivity and increasing net blood flow which is a very good thing for this condition.



Incidentally I have been feeling much better the last few days. Might just be part of the wax and wane affect but I will take it either way.

Regards,
NoMoPain.
Age: 41 | Onset Age: 24 | Symptoms: You name it, I had it. | Helped By: Wand, Theracane, Cognitive Enquiry (Byron Katie) Stretches, The right kind of excercise | Worsened By: Stress, The wrong kind of excercise,
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Re: Posterior Femoral Cutaneous Nerve

Post by webslave »

Actually, the science behind ice treatment for pain has more to do with "the reduction in temperature in the various tissues, together with the neuromuscular action and relaxation of the muscles produced by the application of cold. Cold increases the pain threshold, the viscosity and the plastic deformation of the tissues but decreases the motor performance. The application of cold has also been found to decrease the inflammatory reaction in an experimental situation." (link)

It appears that while mild cold, e.g. cold weather, can increase muscle tension, the severe cold of an ice pack actually relaxes muscles. It also switches off some pro-inflammatory chemicals in the body, e.g. "[the] effect is probably linked to the modifications of immunological molecules having paracrine effects, and not to systemic immunological functions. In fact, there is an increase in anti-inflammatory cytokine interleukin (IL)-10, and a decrease in proinflammatory cytokine IL-2 and chemokine IL-8. " (link)

Kotarinos is a physical therapist, and so I'd take her explanations of the chemistry cum grano salis.

Warning: do not apply ice packs for longer than 10-15 minutes every 4 hours.
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