Symptom Questions

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md84
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Joined: Wed Sep 07, 2011 4:04 pm

Symptom Questions

Post by md84 »

Hello all,

I arrived here after scouring the internet for answers. Here is my situation:

I started working a desk job about two and a half years ago. Before that I worked outside and was constantly moving and never had a problem with my body. I'm 26 years old and I stay very active. When I moved down for my job I thought it was a good idea to invest in a mountain bike. About a year ago I started getting this intense itching in my groin area. I never had a rash but it itched like crazy. I continued to ride my bike, workout, etc. Lately I've noticed that if I ride my bike the itching is worse the next day. I went to the doctor more times than I can count, dermatologists, the whole nine. I thought maybe I have some sort of yeast infection or overgrowth but now I'm not so sure. They gave me creams, medicines, etc and nothing seemed to help. It went away for a while and now it's back. My symptoms are very intense itching in my groin area that comes and goes. I wouldn't really describe it as burning but I guess some people might. I guess it's kinda tingly but it's mostly this unbelievable itching sensation that I can't shake. I notice it during the morning more and especially at my desk at work. I don't have any pain anywhere. Could this be a type of PN/PNE? What can I do to find out? It seems like my doctor just thinks I'm a hypochondriac. I've been through two doctors since I've lived down here. I found this site a few weeks ago and stopped riding my bike. It doesn't seem to have gotten any better lately. It's kinda scary because I work in IT and this is supposed to be my career for the foreseeable future. Any advice is greatly appreciated.

Thank you.
HerMajesty
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Re: Symptom Questions

Post by HerMajesty »

Hi and welcome,

YES! I am one of the few. but definitely not the only, people on this board with neuropathic itch. It does delay diagnosis: Mine was delayed for a few years of dermatologists, allergists, and nutritionists before I got an EMG. If you are having a problem getting anyone to believe you, I would suggest an EMG because neuropathic itch travels down the same pathways as neuropathic pain, but is simply processed differently by the person experiencing it. It will show up on the EMG exactly the same as a pain syndrome. ANY CHANGE IN SENSATION can indicate neuropathy. Numbness is a somewhat more common one than neuropathic itch but in me at least they seem to be related. A Neurologist might find that if they do a "prick test", gently pressing the tip of a needle against the skin surrounding the affected areas, you might have some numbness you are unaware of.
I am glad you stopped riding your bike, it could still be a pudendal irritation that will calm down over time, instead of an entrapment. I have found the challenge we "itchers" have vs. the folks in pain: They do something they should not be doing, and their body immediately tells them to stop. Whereas, as you said, the itch reaction is delayed: You would ride your bike and the next day you would pay for it. This means if you are going to work a desk job, you should invest in a kneeling chair or another kind of ergonomic seating arrangement which is going to take pressure off the pudendal nerve. There is a nice section on seating options on this website as well as a discussion forum about it on this board. If you pretend that you are in pain for a few weeks, and avoid putting pressure on the nerve: no biking, better seating at work, lie down or stand instead of sitting as much as possible on your off hours, God willing this could be a temporary episode of pudendal irritation. If not you will be in the same boat as the rest of us trying to figure out the best treatment option for your particular injury.
Meanwhile, to reduce discomfort might I suggest some topical concoctions that give temporary relief of neuropathic itch? Anything with menthol, such as Gold Bond, works well, but I find it to be irritating and cause dermatologic itch later. The menthol I do use on occasion, is Cortisone-10 Cooling Relief Gel, because it contains not only menthol but also hydrocortisone which helps prevent the dermatologic irritation from developing. Don't use menthol in high concentrations such as Ben Gay, or it will be painful. VERY DILUTED topical capsaicin is my best friend, but it has to be done right. Buy Capsazin-HP (I have had problems with other irritants in some of the generic brands) - it is in the arthritis section and FOR THE GROIN NEVER NEVER NEVER USE IT FULL STRENGTH! You need to fill a small container, such as one that was used to hold face make-up, with vaseline or diaper rash cream. Then squeeze a very small amount, like a half-inch line, of the Capsazin-HP into it and mix well. Try it out sparingly on the affected areas. If there is enough, you will get a "good burn" that relieves the itch, within a couple of minutes. If not, mix in a little more Capsazin-HP and keep trying til you get the right dilution. Always wait a couple of minutes because you might not feel anything at first but realize in a couple of minutes that it is too strong. I carry the stuff everywhere with me because when the itch becomes too distracting and uncomfortable, or if I know I will need to sit for a period of time, I go find a bathroom and apply it and it really helps. There is also vagisil and other numbing creams but personally I find those uncomfortable, like you still itch but since you're numb it can't be scratched. The menthol and capsaicin both kind of burn and that relieves it better.
Any med or treatment that works for neuropathic pain also works for neuropathic itch. I hope you print this and give it to your Doctor so you can get some proper treatment. In case you do: Dear Doctor, neuropathic itch really exists as a legitimate form of neuropathy, which can be treated using the same techniques as are used on painful neuropathies. I have had neuropathy confirmed on EMG (this is difficult in the pudendal distribution, but I also have neuropathic itch in my feet so for me diagnosis was easier); pudendal pathology confirmed via MRN and diagnostic pudendal nerve block, and large tarlov cysts impinging on the nerve roots bilaterally at S2. The subjective sensation I feel from all this objective pathology is ITCH, not pain. Please take this seriously.
All the best to you md84.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Violet M
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Re: Symptom Questions

Post by Violet M »

md84, I've had some dreadful itch due to pudendal neuropathy so I think it's a possibility with you. I used capsaicin also just to keep from going insane now and then. Eventually the itching developed into pain but after surgery as the pain subsided I went back through an itching stage and now I'm fine.

The trick is to figure out exactly which nerve in that area is the culprit. Here are a couple of interesting articles for you to mull over.

http://tinyurl.com/3kqheed

http://tinyurl.com/d748yh
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
md84
Posts: 15
Joined: Wed Sep 07, 2011 4:04 pm

Re: Symptom Questions

Post by md84 »

Thank you for the responses! Y'all have provided me with a lot of good information.

So what kind of doctor should I go see? A Neurologist, Urologist or my primary doctor? Is a EMG going to be able to provide the doctors with the results they need? How do I/they pinpoint the nerve that's causing this problem?

Violet, the first link didn't work and required me to sign in with an account to medscape. I'm glad to hear you are doing good after your surgery! That's great news.

Last question, how do these nerve problems start? Is it possible to develop these issues after a few years sitting in an office and occasional mountain biking?

Thank you very much.
md84
Posts: 15
Joined: Wed Sep 07, 2011 4:04 pm

Re: Symptom Questions

Post by md84 »

Oh another thing, will a kneeling chair help this situation? Is this the kind of thing that will go away with proper precautions (no riding bike, kneeling chair, etc)?

I've been shopping around amazon and found some cheap ones but if it really will help I'd be willing to invest in something nice. I found this http://www.ergodepot.com/Wing_Balans_by ... p/v150.htm (the Wing Balans by Varier). Since I'm 6' 2" I think it would adjust better.

Thanks!
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helenlegs 11
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Re: Symptom Questions

Post by helenlegs 11 »

Hi md84,
Yes there is evidence that sitting and cycling can cause PN, and hopefully because there is no 'trama' involved it's PN and not PNE as that could be helped with physio. Now that you have stopped the cycling has that had any good effect yet.
I think a few have tried the kneeling chairs, I would try and check one out if possible first. . . I have a sciatic notch/sacroiliac problem and the slight pressure onto the sacroiliac area from sitting with the knees pressing up to the hip doesn't suit me. Hopefully you will be fine with one although a lot of people swear by different cushions. People have also mentioned a adjustable, standing work station.
I get the itch too, most undignified. I hope you can get this sorted conservatively. let us know how it goes I hope everyone's good suggestions do help.
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Violet M
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Re: Symptom Questions

Post by Violet M »

Oh, sorry, md84, you do need to log in to medscape to see that first article and it's kind of long so I can't paste the whole thing here but I will paste a little section of it.

You can google some of the nerves mentioned such as the genitofemoral to see images of them. Just wanted to give you some other ideas -- since you said your pain is in the groin area you should also consider some of these other nerves.


Figure 3. Nerve distribution in the abdomen. The iliohypogastric nerve originates from the T12 and L1 interspaces. The Ilioinguinal nerve originates from L1. It lies anterior to the spermatic cord within the cremasteric fascial fibers and furnishes sensory fibers to the pubis, labia, scrotum and medial aspect of the thigh. The genitofemoral nerve arises from L2 and L3 nerves. It runs on the anterior surface of the psoas muscle and divides into genital and femoral branches. The genital branch usually perforates the iliopubic tract lateral to the internal inguinal ring. It runs in the cremasteric fascia with the external spermatic vessels.

Sensory innervation of the groin derives from the 11th and 12th dorsal nerves and the 1st and 2nd lumbar nerves The cutaneous branches of the lumbar plexus include the iliohypogastric, ilioinguinal, genitofemoral, lateral femoral-cutaneous, and obturator nerves. Figure 4 illustrates the nerve supply to the groin.


Figure 4. Nerve supply to the groin. The iliohypogastric nerve, which arises from the 12th dorsal and 1st lumbar roots emerges into the groin as it perforates the posterior part of the transversus abdominus muscle and divides into lateral and anterior cutaneous branches. The anterior branch travels between the internal oblique and transversus muscles while supplying both muscles groups. It pierces the internal oblique muscle approximately 2 cm medial to the anterior superior spine. It perforates the external oblique muscle about 3 cm above the external ring and provides sensation to the skin of the abdomen above the pubis. The Ilioinguinal nerve arises from the 1st lumber nerve root. It perforates the transversus abdominus muscle near the anterior iliac spine, then pierces the internal oblique muscle and proceeds within the cremasteric fascia following the spermatic cord through the external ring. It provides sensation to the medial area of the thigh, over the base of the penis and the upper scrotal area. The genital-femoral nerve arises from the 1st and 2nd lumbar nerves. It divides deep to the posterior wall where the genital branch perforates the posterior wall near the internal ring, then proceeds through the canal in the lateral bundle of the cremasteric fascia with the cremasteric vessels. The femoral branch passes behind the inguinal ligament and enters the femoral sheath lateral to the femoral artery. These 3 nerves are mainly sensory but do supply some motor function to the internal oblique and cremasteric muscles of the spermatic cord.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
md84
Posts: 15
Joined: Wed Sep 07, 2011 4:04 pm

Re: Symptom Questions

Post by md84 »

For a few months I didn't have any symptoms but then after riding my bike for the first time in a while the itch started flaring up again, especially while sitting at work. I haven't rode my bike in about a month and I'm still itching. I guess nerves take a while to calm down :-/

No success with my latest doctor visit. What kind of specialist should I see that might know about things like this? I feel that nobody is taking me seriously and it's extremely frustrating. Would a urologist be my best bet?

Thanks for all of the help!
md84
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Joined: Wed Sep 07, 2011 4:04 pm

Re: Symptom Questions

Post by md84 »

Also, I notice that it's worse in the morning. After lunch it doesn't seem to be a severe...Does this make any sense?
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helenlegs 11
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Re: Symptom Questions

Post by helenlegs 11 »

Got to say that it's the opposite to my symptoms as in they get worse as the day goes by, which does seem typical of PN. . . I had a herniated disc about 8 years ago and had those same symptoms you describe back then.
I put it down to inflammation as the body is trying to protect an injured site and fluid (or whatever, not scientific) gathers around the injury especially when sleeping or lying down for any length of time. I can remember dreadful pain waking in the night and morning, then crawling on my hand and knees to get to the bathroom. After a couple of pain killers and a 'kneeling' shower I could function again (just) as I think movement helped dissipate the inflammation. Not sure if this helps and relates to your problems md84??
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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