Health Organization for Pudendal Education

Hi everyone,

I am pretty new to this forum.

My story:

I am a 33 years old Male

Oct14 --> light weight traning and treadmill --> Pain in perineum for only 2 weeks and gone

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Nov15 --> Heavy lift (squat with barbell, dead lift ...) --> Pain in perineum, unable to sit

Feb16 --> Start seeing Urologists (4 diff Urologists), Diagnosed with Chronic Prostatitis and they put me on antibiotics for 4 month --> Not working at all

Jun16 --> I saw I have Prostatitis and jogging can increase blood flow, so I start jogging everyday --> New Symptoms: Frequent Urination, unable to empty my bladder.

Jul17 --> Start see chiropractor and pain management doctor --> Lumbar MRI is done that time, showing a mild bulging disk between L4 and L5

Sep17 --> my pain gets worse and New Symptoms: pain in left sit bone area, left hip becomes hyper-sensitive and pain when walking.

Nov17 --> Start seeing internal PT for relaxing pelvic floor and also external PT for correcting any posture issue.

Jan18 --> referred to Dr Tayyaba Ahmed at Pelvic Rehabilitation Medicine --> got 6 courses of trigger point injection.
--> combine with trigger point injection, Cymbolta, home stretch + yoga, internal PT and external PT ==> my pain was much better, from 5 done to like 1.
--> Dr Ahmed also get my left hip MRI and MRN T3 for Pelvis
--> My left hip MRI shows I have a Labral tear and FAI
--> pelvic MRN shows I have PNE --> i will go detail about it later
Mar18 --> happiness wont last long, two weeks after 6 courses of trigger point injections, my pain start coming back slowly.
--> Then Dr Ahmed refered to me Dr Colemen at HSS for treating FAI
Apr18 --> Dr Coleman believed my Pain is due to hip impingement and need FAI surgery

Jun18 --> had FAI surgery done by Dr Coleman with no complications --> I also quit my job

After the surgery, my pain is getting better and better.
1)Frequent Urination --> Gone
2) Unable to empty my bladder --> Gone
3) 24 hrs pain --> as long as I dont sit or walk

Jan 19 --> I just got another job, really close to my house, but the worse nightmares are back.
my first week of the new job, my pain is getting worse and worse and i can feel the tightness in my pelvic floor.

So right now, it gets me so confused, i dont know my symptoms were better because the 6 month completely home rest or due to the FAI Surgery.

I scheduled my Dr Corey Hunter on 2/11/2019 to try some injections.

Can someone please help me on my MRN report, is thata really PNE?

MRN:

Pudendal: there is anatomic variation of the left internal illiac artery/vein branching into theinferior gluteal and pudendal vessels, which occurs more distal than usual at the level of the greater sciatic foramen of the greater sciatic foraman into the superior gluteal arteries. As a result, there is crowding of the greater sciatic foramen and contact of the left pudendal nevrve prior to its pelvic reentry through the lesser sciatic foramen(seies6:19-25)

The pudendal nerve have normal signal intensity and morphology. there is no abnormality in Alcock's canal on either side.

I am only 8 month post op for FAI surgery. Not sure if i need to go for decompression Surgery (Dr Hibner), hopefully he will take my new insurance (Cigna open access plus)

best regards

Josh

Hi Josh,

Sounds like you have been through a lot already. I'm sorry to hear the pain is coming back.

I don't know for sure the the abnormalities listed on the MRN report are significant to what you are experiencing. Unfortunately, MRN's aren't entirely helpful in the diagnosis of PN so you can't always go by them for the diagnosis. Sometimes they show valuable information but not always. If you live on the East Coast you might want to check with Dr. Conway because he sees male patients. Last I heard Dr. Hibner only sees female patients but you could check with his office to see for sure.

Violet

Thank you Violet,

I am living in New York, it will take me 4-5 drive to NH to see Dr Conway. --> not that bad compare to Dr Hibner

I probably will see Dr Hunter first and ask him to get me Dr Potter's special pelvic MRI and try some injection first.

I just feel this dark road will never end for me. not sure how long i will last on my new job due to the pain.

Josh

Well, that would make a lot of sense to get the MRI from Dr. Potter since you live in NY. It looks like you already had a pretty detailed MRN done though. Where did you have that done?

I understand the feeling of despair. The reason I stay on this forum is to let people know there are options and that many people get better and move on with their lives. It's really hard while you are going through it though. You are young and you have a good chance to heal. Keep fighting, Josh. You will eventually get the answers you need.

Violet

Thank you Violet, you are so kind.

The MRN for Pelvis was done at ColumbiaDoctors/New York-Presbyterian Imaging.

the Attending Radiologist is Tony Wong

Josh

OK, well I haven't heard of him so I'm not sure how your MRN would compare with the Hollis Potter MRI or if it would be worth it to have the 3T MRI. The report you posted of your MRN could be an indication of PNE but I can't say for sure. It sounds like there is possible impingement of the pudendal nerve at the level of the greater sciatic foramen prior to it passing between the sacrospinous and sacrotuberous ligaments. The greater sciatic foramen is formed partially by the ST and SS ligaments. I don't know if a surgeon could shave part of those ligaments away where they are impinging on the nerve. Is your pain primarily unilateral -- on one side? That is one of the indications of a possible nerve impingement on that side.

Does your new job require a lot of sitting and does sitting bother you? I don't know if your company would be willing to make some accomodations for you, such as a stand on your desk that easily raises and lowers so you can go back and forth between sitting and standing. One of my coworkers recently got one and it's pretty awesome.

Violet

Thank you for your help violet,

all my pain are from left side and and perineum(feels like right in the middle of my hip, but it could be Radiating pain, not so sure).

1) Does your new job require a lot of sitting and does sitting bother you?
Yes, I am an healthcare analyst, playing with data all day long.
I have 4 different type of cushions, i always switch between them for max comfort.
even at my best moment, i only able to sit on a cushion for 20 mins. but since all my pain are from left and mid part, i am able to sit on my right side (i fold the cushion in half) as long as i can. But my right side will be numb after 30 - 50 min of sit, and only with right side sitting, my posture will be really bad, and my back and shoulder are hurt because of that.

2) I don't know if your company would be willing to make some accommodations for you, such as a stand on your desk that easily raises and lowers so you can go back and forth between sitting and standing.
Luckily, I have the sit/standing adjustable desk at work, but i realized that standing for long period of time will my pelvic floor tight (especially perineal area)
so right now, i will sit with my right side for 30 mins and stand for 10- 15 mins and repeat. i even have a TENS 7000 simulator in my backpack for emergency.

Sitting and walking are my worst nightmare.

The strange thing is my walking was getting better and better when I was in my 7 month stayhome after the FAI surgery. I was able to go to Costco with my wife. it will like 30 mins driving back and forth plus about 1 hour shopping. the pain at that time are very minimum.

but now after i start my new job, even walking with few steps will bring me great pain. So my wife or my mom have to drive me to work and pick me up after.
I dont know what trigger it, maybe the stress from work or waking up early to go to work?
I may have some stress at my first week of new job, but the work environment are really good, today will be my 1 month, and my manager have never come to my cubical (we have very tall wall at each cubical). so I believe that I am pretty relax at work.
--> normally manager use skype status to spy on us, but i use excel macro to make my pc always active and set a timer to turn it off after 5 PM. so i can take maybe longer break to do some stretch.

I just recently brought at E - scooter to cover short distance travel. ==> it's e illegal in New York City, but I really dont want to stay home all day at weekend.

Josh

Hi Josh,

Hopefully Dr. Hunter will be able to answer some of your questions. Good luck with your injection tomorrow. I would be interested to hear how it goes for you.

Violet

Ugh, I just saw him today, but did not get injection. He is very nice and knows a lot about PN and PNE.
He spent some time to draw a flow chart for my treatment plan
1) 2 X pudendal nerve block, if positive, he will try Radiofrequency Ablation (RFA). He told me that it should last for few month.

2) if plan 1 failed, he will try 2 X Ganglion of Impar Block, if positive, he will inject Alcohol to dehydrate the nerve. This should be long term solution.

3) if plan 2 failed also, DRG Stimulation - Neuromodulation of the Dorsal Root Ganglion
But Cigna does not pay for it. BCBS does cover this procedure, luckily, my new company provide both Cigna and bcbs.
Unluckily, I cannot switch it now, I have to wait for next year to switch to bcbs.
then he suggested me That I can do Ketamine infusion (this will only make me feel better, not a treatment), while I am waiting for switch insurance.

Well, this is the plan he provide to me. I will try some injections first, but I didn’t get injection in my visit today. Because stupid Cigna will have to prove it first. So my first injections will be next Thursday.

I asked him about Another MRI or MRN, he told me that MRI/MRN is really unreliable if you have pudendal nerve issue, the best way is injection. But still cannot be 100%.

Well, I spent 20 min with his nurse to enter my pain history. And spent about 20-30 min talk with him.

Overall, Dr hunter seem to be confident and knowledgeable about PN/PNE. But only time will tell.

I will keep everyone update on my future injections.

I am think if I should do DRG or Decompression surgery.

According to him, DRG is a very simple outpatient surgery, some patients even did it while they were awake.

So confused now.

Josh

Hi Josh,

Those are all procedures that are commonly done with pn, and it makes sense to start with a block to see if the pain declines to help with diagnosis. Dr. Hibner told me that he doesn't rely on MRIs for diagnosis because there are so many false negatives. He uses the patient's history of symptoms and a reduction in pain with a block. Dr. Conway said something similar. Nonetheless, they can be useful to eliminate things and sometimes something does show up that fits with your symptoms that suggests pne (mine had edema where my nerve was compressed). I don't know if MRNs can serve the same purpose. I think (like Violet) that MRIs are the norm. Let us know how the block goes.

April