I HAVE A DIAGNOSIS ! INGUINAL HERNIA

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
Thunderman69
Posts: 53
Joined: Wed Sep 26, 2012 1:56 am

Re: I HAVE A DIAGNOSIS ! INGUINAL HERNIA

Post by Thunderman69 »

Congratulations! Sounds like your gonna get your life back real soon.

I went to a so called hernia expert at the Cleveland Clinic 2 weeks ago, as a precautionary last step before I get my SCS implanted ( its just been scheduled for next Friday). He told me that my MRI looked great as well, with no signs of hernias! :oops: I proceeded to ask him if he could order a Dynamic Ultrasound and he his eyes popped out of his head.. Like he never heard of such a thing in his life! What a waste of time and a $50.00 insurance copay.

Don - where does a person find one of these tests? I dont know where else to go if a world famous hospital like the Cleveland Clinic doesnt even offer it...

Also, do you suffer deep rectal pain/tailbone pain with these hernias? And does the pain dissapear when laying on your back ? My pain gets worse when I lay on my back or my right side so I am trying to determine if its even possible that inguinal hernias fit my case.

Thanks for any feedback you can give me as I am getting real close to a BIG procedure in less than a week.

Matt
Symptoms started officially on Feb 21, 2012 w/no known cause! Multiple pain flares, ER Visits and tests (had 3T MRI in New York by Hollis Potter). Inconclusive MRI, but finally diagnosed with PN in 2013. Boston Scientific SCS implant surgery done on May 3, 2013.. SCS Implant no longer effective in relieving pain. Condition has deteriorated rapidly since a fall off a ladder in March 2014 (suffered trimalleolar fracture of right ankle). Surgery Consult with Dr. Conway scheduled for June 4. 2015.
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: I HAVE A DIAGNOSIS ! INGUINAL HERNIA

Post by donstore »

Thanks to everyone for all your good wishes, I guess the take away here is that an inguinal hernia that presses on the nerves that run thru the inguinal canal can cause referred nerve pain to areas of the pelvis other than the site of the hernia and that diagnosing a reducible hernia that does not cause an obvious lump in the lower abdominal area requires imaging and diagnosis that can be challenging and difficult. The good news is that inguinal hernias are easy to fix over 600,000 procedures per year. Causes include anything that increases intra-abdominal pressure over time. This Would include obesity, lifting, or just the ravages of time. I remember the exact moment that mine happened almost 6 years ago. I was ejaculating and And felt a sharp pain in my scrotum that did not go away. I had experienced post ejaculatory pain there in the past but it always been transitory in nature. After that my pain was made worse by standing sitting lifting straining and of course having sex. The sitting pain actually set in three years ago after I had my hip replaced and following a Cortisone shot from Dr. Weiss in San Francisco. Why doctors do not bring up the possibility of an inguinal hernia when a person presents with clinical symptoms like mine I do not know.
I guess it is a lot easier to diagnose a hernia when there is an obvious lump in the lower abdominal area. Reducible hernias that retreat into the abdomen when laying down make a lot of traditional imaging useless. It takes a doctor who is a great diagnostician and doesn't just grab the low hanging fruit (this metaphor may be particularly apppropriate for the gentlemen in the audience). Maybe it takes patients who educate each other like we have done here. In my case it was reading the experience of Griff 522 hello Linda and also the relentless posting of the often banned NorthernSpy. I had almost given up and resigned myself to a life of disability and heavy meds but now I have hope once again. Working in a hospital makes me realize that often death is preceded by a period of disability unless of course you have a heart attack or something quick so I guess I have some practice on how to deal with that should it become an issue down the road but I am certainly grateful for a chance to put it off for a little while longer. The next step could me further imaging as described in my post here:

http://www.pudendalhope.info/forum/view ... =80#p34134

In my case dynamic ultrasound was diagnostic but if it wasn't the next step would be to find old-school guys who:

(1) trust their fingers,

(2) know small hernias can cause pain, and

(3) took time to feel for a hernia dynamically -- while I squatted, Valsalva, stood up, lay down, and so on.

http://www.riainvision.com/conditions/h ... sound.aspx

Good luck to everyone. We all help each other.
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: I HAVE A DIAGNOSIS ! INGUINAL HERNIA

Post by donstore »

Unfortunately, one of the apostles of the hernia-explains-pelvic-pain-in-women is Barbara Metzger. She explains the situation well, but she apparently has a lousy track record (I believe she lost her license for awhile, and may have done some bad surgeries), and at least one person who believes she has PNE started with a bad experience with Metzger

http://www.nytimes.com/2011/05/17/health/17brody.html

http://www.laparoscopytoday.com/2004/01 ... _wome.html
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: I HAVE A DIAGNOSIS ! INGUINAL HERNIA

Post by HerMajesty »

Don,

I see Thunderman asked something about rectal pain and I also noticed a comment about this in another hernia thread, something to the effect of the rectal area being a possible source of referred pain in a hernia. I am wondering what you have found out about this. I have for a long time suggested to others on this board that they do not assume pudendal neuralgia without ruling out a problem originating in the inguinal canal (hernias are not the only cause of inguinal neuropathies)...But, my understanding was that the nerves in the inguinal canal "overlap" with the pudendal in that both can cause symptoms in the penis / scrotum / testicles of the male or vagina / vulva / clitoris in the female. I had the impression that anal or rectal pain could not originate from the inguinal canal - no connection between the 3 nerves in the inguinal canal, and the rectal area. have you learned anything about this issue /have any thought on it?
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.
Dave
Posts: 142
Joined: Fri Sep 23, 2011 3:43 pm

Re: I HAVE A DIAGNOSIS ! INGUINAL HERNIA

Post by Dave »

What type of specialist do you recommend going to to be evaluated for a hernia?
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: I HAVE A DIAGNOSIS ! INGUINAL HERNIA

Post by donstore »

See my post here:
http://www.pudendalhope.info/forum/view ... =80#p34134
And don't forget to read Linda's post here:
http://www.pudendalhope.info/forum/view ... =80#p34117


HM- My opinion is that an inguinal hernia can cause referred pain to other areas than those that are inverrated by the nerves in the inguinal canal. I do not have significant rectal pain but I do have burning in the ischial tuberosities when I sit for a long time. My theory is that muscle spasms created by irritated nerves can cause pain in areas other than those inverated by those nerves. Most of my insight on this topic was gained through the experience and posts of the often banned NorthernSpy.If I do get better after all these years I will have him to thank for it. This is how he put it to me:

> I see Thunderman asked something about rectal pain and I also noticed a comment
> about this in another hernia thread, something to the effect of the rectal area being a possible
> source of referred pain in a hernia. I am wondering what you have found out about this

I am the well known "NorthernSpy" -- yes, a guy -- who's been banned from P-info many times. I was diagnosed many times with "classic" PNE -- by Renney, by Holis Potter, by Antolak, and by others.

But they were all wrong. I had an inguinal hernia -- actually 2 of them (left & right) -- got them fixed in 2007 and I'm fine now. I did an 80 mile bicycle ride this past September, and 100s of 25 and longer rides during the past few years since my hernias were repaired. Dr. Renney (a former bicyclist, and Nantes "success" story) can't say the same.

So perhaps my experience may be of interest.

> I had the impression that anal or rectal pain could not originate from the inguinal canal - no
> connection between the 3 nerves in the inguinal canal, and the rectal area. have you learned
> anything about this issue /have any thought on it?

I don't know your medical story and I have no credentials to diagnose anyone. You might have a hernia (or not) or could have one and it may not explain your symptoms.

BUT SPEAKING GENERALLY, yes, hernias can cause rectal pain for very logical reasons. I sometimes experienced extremely painful bowel movements, and experienced the "classic" PNE "golfball up the rectum" symptom. Here's why:

A hernia is a rip in the abdominal sack that allows the intestines to push through. Lots of consequences can result from that:

-- sometimes the hernia presses inward on the three nerves in the inguinal canal. In a sense it's a nerve entrapment -- intra-abdominal pressure (as examples -- from sitting, or lifting weights) presses the intestines into the nerves, irritating them. At night (any time lying down) the intestines pull back and the nerves get a chance to recover partly. This explains "classic PNE" (which is actually a classic hernia sign): pain that is mild or gone most mornings, but worse from sitting. In time the nerve irritation gets habitual -- easier to trigger, less likely to subside. It also explains why MRIs and CT scans are poor tools for diagnosing hernias (while lying down and not moving the intestines are pulled back and the hernia is almost impossible to see -- like an inner tube pushing through a slit in a car tire, and then slipping back into the tire when the air pressure is reduced -- the slit in the tire becomes invisible).

-- sometimes a bowel movement pushes the intestines deeper into the nerves. It's a matter of bad luck -- the orientation and firmness of a stool may happen to maneuver the intestines to press into the nerves. Straining to make a bowel movement is also a classic way to increase intra-abdominal pressure (aka the "Valsalva Maneuver") which can also increase nerve irritation.

-- the key about pain from hernias is -- like pain from kidney stones -- it's "referred" pain. Where the patient hurts is not where the problem is. For example, one Gastroent doc was convinced I had an anal fissure based on my symptoms. I had the "golfball" sensation, but the doctor saw nothing when he looked. Ditto tailbone, vulvar, penile, prostate, and other forms of pelvic pain -- it can all be referred from chronic irritation of the nerves in the inguinal canal. One of the three nerves there is the genital branch of the genito-femoral nerve, which may directly explain some symptoms.) -NS

(Don) I will be seeing a hernia surgeon at UCSF on May 13 and hopefully I will have more to report then.
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: I HAVE A DIAGNOSIS ! INGUINAL HERNIA

Post by janetm2 »

Hi Donstore,
I am a little ,ate but wanted to send my congrats to you on finding out what is causing your pain. Also to thank you for passing all the knowledge to the forum I am sure someone can benefit. Just so many ways we end up here with pain and the root cause explanations to finding the hernia can ease a person and help them get the right help. Best of luck to you.Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
kathyd
Posts: 699
Joined: Mon Dec 20, 2010 8:48 pm

Re: I HAVE A DIAGNOSIS ! INGUINAL HERNIA

Post by kathyd »

Hi Don,
I just noticed your post. Congratulations on finding this diagnosis. I hope all goes well and that you are finally on the road to full recovery. That's wonderful and inspirational and thx for posting this info! Im happy for you!
You may remember me : the gal who also had pelvic varicosities found on MRIs and thus had one side embolized at Dr Potter's advice. I had no relief from that and have since thought about doing the other side etc, but I remember you did the same procedure with no relief as obviously your varicosities weren't causal.

I have heard from Northern Spy also last year and considered that inguinal hernia or other type of hernia might be a cause for me too, but after reading about Dr, Metzger and how untrustworthy she was, I never pursued it, as I didn't know who to go to..

I may've missed it, but what type of doc did you see who diagnosed this hernia.? One practitioner suggested I see a gastroenterologist, but that didn't make sense to me..
What type of doc would I start with? I think "Northern Spy" went to general surgeons, but my gut tells me that I'd probably be dismissed by them, as a thin long and lean woman.

I would love to get a dynamic ultra-sound and see a doc who uses all his/her senses to diagnose as you described, rather than just relying on technology.
Like you, my pain is okay when I get up and then increases by the hour. Rectal pain sets in and is throbbing the longer Im on my feet... by dinner hour I am in agony. So I spend
my time going back and forth to bed as lying down decreases pain. The toilet seat is the only place I can sit. I can' even sit on an elevated cut- out toilet seat in or car... only an actual Toilet seat in which the Peri-rectal area touches nothing.. So sitting at all is out right now, which has made me housebound for a long time.
I have never gotten relief or numbness from PN blocks..That and other things makes me wonder if I really have PN? ....(PT never helped either..long story)
Anyway if anyone hears of docs on the eastern coast who can do a dynamic (was it ultra-sound or MRI? Sorry!) I would love ot check into it ..I also have pain after bending .. something fairly new.
I have a bladder issue which makes it hard to empty and feel relief..I must press onmy belly while standing up ,, to get the "Pee" to come out enough ...sorry for details.
So best of luck to you! What happy news!
Pls keep us posted and if anyone has any doctor info regarding these hernia pls do post it!
Thx so much
Kathy
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: I HAVE A DIAGNOSIS ! INGUINAL HERNIA

Post by donstore »

Have your gp schedule an ultrasound exam for inguinal hernia that includes standing. Mine was found just by coughing while lying down.Then see my posts above.
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
kathyd
Posts: 699
Joined: Mon Dec 20, 2010 8:48 pm

Re: I HAVE A DIAGNOSIS ! INGUINAL HERNIA

Post by kathyd »

Thanks Don,
Is the Ultrasound exam done by a technician at an Ultrasound center or a doctor?
I ask this as we have a local outpatient center that does ultrasounds and all the other typical out-patient tests, but I don' t know if they will do it standing coughing, etc...
I assume yours was done that way due to ----the way the doctor wrote the script for it?
Or did you have a center that does special types of ultrasounds?

Sorry for all the questions.. but not sure how go about it...My GP does not seem too interested in getting involved in my complicated pain issue.. So I would probably ask my pelvic pain gyn to handle this.. she is kind of the main doc who has all my records,, tho I have seen many specialists for sure!

Thx!
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