Health Organization for Pudendal Education

Hi everyone,

I am very glad to have found this forum/website. I have been on a rollercoaster for the last 2 years and don't know where to go anymore.
I will tell you my story.

I am a 28 year old male from Sydney, Australia. Fairly athletic before the injury. Average weight.

For many years I had a small discomfort in my left groin. I had multiple ultrasounds and they all came back with nothing. I have had lower back pain which has worsened as the years went on.

I was quite active before my injury, I cycled 3 or so days a week for an hour(20km roughly). I did lift weights for a little while, but gave up on that due to a shoulder injury and the groin discomfort.

In December 2013 I was out cycling. What used to happen is, when I was out of the saddle, as I peddled, I had a build up pressure/discomfort feeling in my left groin. I would relieve the feeling by sitting back down on the saddle, and peddling slowly for a minute or so. This particular day I think I pushed too hard, while I was out of the saddle, and something felt as if it dropped into my scrotum, with excruciating pain. My initial thought was a hernia. But everything felt normal on touch, and looked normal.

Since then I have seen many doctors, specialists, have had multiple mri and ultrasounds, etc. The only thing that has ever come up on the scans was 'mild adductor tendinopathy. And SIJ instability, sacroilitis. It was all focused on a groin injury. I tried PRP injections into the adductor, with no success. Lots of meds, NSAIDS. Physio would make everything worse. But still no relief.

About 6 months after the initial injury, I started having a burning sensation when I would urinate, and the groin pain would get worse with urination. No one could explain why I was having this.

A year later, I had a random fever and an odd sensation in my perineum. My doctor ordered a PSA blood test to check my prostate, and it was a shock! 6.7! They all freaked out a little and said that was 3 times more then it should be. Not to mention they have never seen a 27 year old with prostate cancer. I saw a urologist, who put me on antibiotics for 6 weeks. And the PSA dropped to a normal level. But my groin pain and burning sensation didn't go away. The Urologist said my prostate is now fine. He referred my pain to the pubic tubercule. Along the spermatic cord.

Then finally I saw a groin surgeon. One of the best doctors I have seen through this process. Dr Garvey. He recognised that I have a groin disruption injury, but also symptoms of pudendal neuralgia. I had slight loss of sensation to the left side of the tip of the penis.(This was new to me as to me it felt fine, but I couldn't really feel a needle prick in that area). I do note that around this time, the burning sensation in the penis had settled down a little. I wasn't sure what to think of all this. An ultrasound that I had of my groin came back with a slightly thickened spermatic cord, but still normal. And pain in the spermatic cord region.

So, I had 2 pudendal nerve injections into the alcocks canal, to try and sort out the pudendal side of things. I found they didn't help with my symptoms.

Then I saw a physio. I was a little constipated at the time, so she gave me a list of foods to eat, etc to help. But the exercises would aggravate my groin pain too much so I didn't really do them. I started walking heaps, and found that the burning sensation in the penis was slowly going away. But groin pain was there. But I could now point to the exact spot that hurt, it was as if the pain centralised to a particular spot in my groin.

I started getting an odd pain/pulling sensation just under my scrotum on the left while walking, and the doctors were saying it is to do with the pudendal neuralgia. It was affecting my ability to walk without discomfort, and was making it worse by walking.

I had 2 MRI's of the pudendal nerve. One came back with nothing, but the other showed some fibrosis tissue near the perineum. Still no entrapment, and the nerve looked fine. So we went on the search of someone to inject the pudendal nerve around that fibrotic area.

During my search, I came across another radiologist in December 2015, who performed the injection further down about 7 cm from the other 2 pudendal injections. And I am here now!!! It has flared up all my symptoms and even made some worse! My groin pain is a lot more now, I cannot exactly pinpoint where it hurts. I have pain in the tip of the penis. Pain and burning when urinating. And I have become a little constipated again with pain when going to the toilet.

I am in desperate need of advice and help with this. The injection flare up has not really settled down(has been about 6 weeks since I had it done).

Any thoughts, ideas, help, would be much appreciated.

My main concern is, do I have pudendal neuralgia? My groin/testicular cord pain comes on at the same time as the burning in the penis. So I can only think that they are related, and not 2 separated injuries. But does the pudendal nerve have anything to do with the testicular cord/adductors/conjoint tendon/groin?

Dr Garvey has proposed a groin reconstruction operation, since I have tenderness along the conjoint tendon, cord and adductor. But he isn't sure it will help with the burning sensation I have in the penis. But I think they are all related. Especially since my initial problems were only the groin. And the burning/penile issue, only came 6 months after. Mind you, I stopped all form of exercise from the initial injury as I was in too much pain to do anything.

Looking forward to your responses. )

When I first started to read your post the first thing that came to my mind was adductor tendinosis. I learned something recently from an orthopedic surgeon that the adductor tendons that attach the adductor muscles to the pubic bone are not your typical tendon and not considered a "true" tendon. The adductor tendon is comprised of a tendon covering and then the adductor muscles are inside the tendon and the muscle plus the outside tendon covering of these muscles attach to the pubic bone. He told me if you have the diagnosis of tendinosis on MRI it means you have micro tears of the adductor muscles that should be repaired. I'm in the process of looking into what the different surgical options are as some physicians repair the muscle tears and some physicians cut the tendon. Who knows maybe I'll decide to leave it alone.

It seems plausible with the groin being a confined space that if a nerve is trapped in there that could be causing the burning pain. See the link below to some of the anatomy of the groin. You can scroll through the different views and add or subtract muscle layers. It really gives you a better understanding of the groin area.

http://www.healthline.com/human-body-ma ... oral-nerve

I think what happens to many of us that if we have pain in one area, we compensate how we move which results in another problem. At least that is my take on what happens to us mechanically and may explain some of the continued and new symptoms.

Keep us posted.

So sorry to hear you are dealing with this my friend.

In my opinion, it does sound like the beginning stages of PN. Mine started the same way and gradually got worse over time.

I was very active and weight lifted all the time.

I started noticing burning when i peed, numbness when i sat too long, and some pain in my buttocks and perineum.

Lived with that for a couple years and it eventually got way worse for me, to the point that i am going for surgery in two weeks. I can no longer sit at all, and i have pain that is nightmare worthy if i have sex, sit, or do anything to irritate the nerve or whatever is going on in there.

I am not saying this to scare you as you might not have PN at all, but i do NOT want you to wait and get bounced from doctor to doctor like i did before i found out about PN all on my own.

Tell the doctor you are deeply concerned about PN and explain to them what it is, if they aren't willing to learn or do adequate testing then move on to the next doctor, one who will actually do their job and help you.

For me that was Dr. Conway here in MA/NH.

This condition is a tough one for sure, but you can beat this. Just keep advocating for your health and get as many tests as possilbe to narrow things down and rule things out.

Get well my friend

Nyt,

What type of MRI would show problems with the adductors? Not one of the pelvis, I assume?

Thanks,

Stephanies

joeparz,
Thank you for your well wishes. It is amazing how simple words and wishes can mean a lot to someone in these conditions.

Have your scans shown an entrapment? On what basis are they performing surgery on you?

Nyt,
I really appreciate you sharing the explanation on the adductor tendons. I have a surgeon here in Australia who is willing to operate by adductor tendonitomy (where they make a cut into the adductor tendon to take the strain from it. And also operate to the opposing tendon(conjoint tendon) as I have tenderness and pathology on that too. But I am worried about doing the surgery, because of the PN, and thinking is the PN giving me groin pain along the adductor tendon, conjoint tendon, and testicular cord.
Also I have read that having surgery on the groin, could make the neuralgia worse... Is this true?

Stephanies,
My MRI of the adductors/groin was a musculoskeletal hip MRI. I have had 2 Hip MRI's. 2 Pudendal nerve MRI's, one with nuclear contrast, one without. 1 Lower Spinal/Pelvis MRI. 1 Bone scan. 2 or 3 xrays of the pelvis. Multiple ultrasounds of the groin.

On MRI scans I have:
mild adductor tendonopathy, worse on left then right
tiny left hip labral tear(all doctors including hip surgeon have ruled the hip out as the cause)
sacroilitis on both sides (although SIJ's always look normal on xrays)
tiny area of fibrotic tissue in perineum on left side

Ultrasounds show spermatic cord slightly thicker on left then right. Tenderness more on left, but also noted on right
adductor tendonopathy on left
conjoint tenderness on left

Anyone have any ideas on what else I could have done/checked

Admir,

Have your doctors ruled out neuropathy of the ilioinguinal nerve of the genitofemoral nerve?

http://www.nejm.org/doi/full/10.1056/NE ... 1042660105
http://www.healthline.com/human-body-ma ... oral-nerve

Check out the list of PT's for Australia on our website at pudendalhope.org in the left hand menu. http://www.pudendalhope.info/node/59 If you have SIJD you may want to consider seeing someone who uses Peter Dornan's methods.

Violet

Hi Violet,

I have seen Sherin Jarvis here in Sydney. I couldn't do the excerises as I am in a lot of pain. And the other problem is any manual therapy around the perenium flare some symptoms up.

Dr Garvey(groin surgeon) did suggest Peter Dornan. What are his methods?

Dr Garvey at first didn't think the ilioinginal or genitofermal nerves were involved, but he now says they could be. If he operates, he said he will be able to see if they are the problem and will remove them if so.

But he believes the penile pain/burning is pudendal related and not another nerve. Could it be another nerve causing this?

Best regards

Stephanies, MRI of the pelvis will show adductor tendinosis as well as MRI of the hip.

Thank you for the replies. I had a pelvic MRI with Dr. Hibner's office about 2 years ago, I guess it would have been noted on the report if the radiologist saw anything. My adductors are very tight bilaterally and the left one can sometimes be a little painful. Maybe I will ask for a hip MRI.

admir87 wrote:Dr Garvey(groin surgeon) did suggest Peter Dornan. What are his methods?

Here is a link to Peter's website: http://www.peterdornanphysio.com.au/pudendal.html
You can also read an interview with him on our website. http://www.pudendalhope.info/node/96 You have to scroll down part way down the page. You mentioned you had SIJD and Peter specializes in treating it as well as PN.

admir87 wrote:Dr Garvey at first didn't think the ilioinginal or genitofermal nerves were involved, but he now says they could be. If he operates, he said he will be able to see if they are the problem and will remove them if so.

But he believes the penile pain/burning is pudendal related and not another nerve. Could it be another nerve causing this?

I just wondered about the ilioinguinal or genitofemoral nerves because it sounds like your pain originated in the groin and that the penile burning started later. One theory is that a person may have pain somewhere else in the pelvis and then the pelvic muscles start to tighten and impinge on the pudendal nerve irritating the nerve. So maybe you originally had some irritation to a different nerve that innervates the groin area but as your pelvic muscles tightened up and impinge on the pudendal nerve then you started having pudendal neuralgia. It's just a brainstorming theory to consider before going for a surgery that may not be right for you. Has your physician done a nerve block on those other nerves to see if it's possible they are part of the problem?

Here are a couple of interesting articles on groin innervation:

http://www.ncbi.nlm.nih.gov/pubmed/24068690
http://emedicine.medscape.com/article/2 ... verview#a7
http://www.ncbi.nlm.nih.gov/pubmed/10945356

Violet