Looking for answers::

[constantpain]

I am looking for answers, help and advice. I have not been officially diagnosed with anything but here is my story and symptoms. I would very much like to hear if what I am dealing with is anything along the lines of what other have gone through and/or share the same symptoms.

I am 40, a male and healthy. I lead an active lifestyle beyond average. I live in the mountains, ski in the winter and bike in the summer and also ride motorcycles. I'm a photographer so my job can be demanding requiring me to be on the go for long hours and carry heavy gear.

Here are the details. Note, all pain is on the right side of my body.

About 6 months ago I got pretty sick. My glands both in my neck and groin seemed swollen to me. I was having mild, bulging empty feelings near my right inner hip/pelvis area. I wound up having 2 ultrasounds to rule out cancer(no cancer). The second test showed a very small hernia. I then met with 2 hernia specialist and a 'sports' hernia specialist. All three concluded that based on physical exam they would 100% NOT diagnose me with a hernia and none recommended surgery. In short, I was told that the pain I was having was not due to hernia based on explanation, symptoms and location. I was told to go about my life and stay active. But the pain continued and got worse.

Approximately 5 months ago I started to exercise heavily and mountain bike nearly every day and was feeling better than ever. One morning I woke up and needed to take the day off due to pain. The pain was more in the hip area on my side at that time. One day turned into two, into a week and eventually to where I am now at over 5 months of not being able to exercise or be active. I sought help from a hip surgeon to see if what I had was a labrum tear or something else going on in my hip. I had 2 MRI's and nothing was found.

Symptoms that I am dealing with:

Sharp shooting pain below my hip bone half way to my groin
Empty hollow feeling
(this one's for men) Sometimes a slight/faint feeling in my right testicle like I just got slightly racked.
Constant nagging/pulling feeling all day.
Pain is less in the morning but increases during the day and/or with more activity
Burning sensation in pelvis area
Pain increases sitting at a desk(sometimes immediately)
Pain if I drive a long distance
At times I have moved 'the wrong way' and have had such sharp pain I just need to stop what I'm doing. Sometimes I have had to go to my knees to just deal
Nearly immediate pain if I sit on a motorcycle (not a 'crotch rocket' all hunched forward but putting my body more in a L shape.
Pain radiates to my side towards my back and slight tingles down my leg, sometimes a few shots of pain down the leg.
If I sit in a chair and lean forward I get a bulging, pinching sometimes sharp pain
Sometimes I feel like my pants or belt are on too tight and my hip bones is very sensitive
There have been times of lightning bolt type of pain


In advance I appreciate any comments, feedback or advice. I have seen 5 different doctors and the last one I saw, the hip surgeon recommended I try an anti seizure drug. I want to learn more about what this might be before I start taking such meds though.

Best regards.

[HerMajesty]

Personally I have my doubts about this being PN. A couple of possible differential diagnoses:
1. In the midst of your active lifestle, you might have injured your sacroiliac and / or hip joints as they articulate with your pelvis. search terms are sacroiliac joint dysfunction (SIJD), pelvic joint dysfunction, or hip restriction. Imaging studies will not show this because they are still pictures taken while you lie or stand in a neutral position; and joint dysfunction is a movement disorder which usually manifests in flexion or extension. A PT (Sports PT is a good bet) who can tell you in advance of appointment that they have experience in evaluation and Manual Therapy manipulation of the Sacroiliac and hip, is who to see about this.
2. As far as pain in the testicles, if it is paired with something impinging into the inguinal canal...Maybe this is a hernia, but if they are having trouble determining this, maybe it is also some structural abnormality secondary to joint injury...either way, the nerves within the inguinal canal itself are more likely than the pudendal nerve to be the direct cause of the pain. The nerves running through the inguinal canal are ilioinguinal, iliohypogastric, genitofemoral. They cause pain in many of the same areas as the pudendal. You need a better work-up and even a small hernia should be dealt with if there is one. If not, whatever IS there should be repaired to take pressure off those nerves.
With any type of genital pain, pudendal involvement is possible, but from what you have described my vote is no. pain in testicles from inguinal impingement, pain in hips from joint dysfunction, possibility of much easier fix. I wish you the best.

[Violet M]

Welcome to the forum. In addition to what HerMajesty has suggested other things to rule out would be a pulled muscle such as the psoas or chronic ligament strain and pelvic mis-alignment. I agree that it would be a good idea to have an evaluation by a physical therapist who specializes in the pelvis to see if they can help you sort this out.

Best,

Violet

[Karyn]

Hi contant,
Welcome to HOPE!
I agree with HerMajesty - your pain may not be coming from the PN, but from the inguinal canal. I'm thinking the ilioinguinal and/or genitofemoral nerve. Both of these nerves would cause hip and groin pain. Additionally, it may be worth pursuing the hernia a bit more.

About 6 months ago I got pretty sick. My glands both in my neck and groin seemed swollen to me.

Did you receive a diagnosis for this? Have you been checked for auto-immune dysfunction? If this is when your pain started, it seems unlikely it's just a coincidence.

In short, I was told that the pain I was having was not due to hernia based on explanation, symptoms and location. I was told to go about my life and stay active. But the pain continued and got worse.

What is your doctors explanation for this?

I sought help from a hip surgeon to see if what I had was a labrum tear or something else going on in my hip. I had 2 MRI's and nothing was found.

Glad you had the labral tears ruled out. Was any inflammation or arthropathy picked up? This would be indicative of a joint injury.
It would be very helpful if you could be more descriptive about what you're experiencing?

Empty hollow feeling

Where?

Constant nagging/pulling feeling all day.

Is it in one location or several? Where, exactly?

If I sit in a chair and lean forward I get a bulging, pinching sometimes sharp pain

Where? In the buttocks? Hips? Lateral thighs? Lower abdomen? Groin?

Sometimes I feel like my pants or belt are on too tight and my hip bones is very sensitive

Could be SIJD, but sounds more like the ilioinguinal or genitofemoral nerve. Do you have any lower abdominal pain at all?

the hip surgeon recommended I try an anti seizure drug. I want to learn more about what this might be before I start taking such meds though.

I don't blame you. Unfortunately, you have to be very persistent and your own advocate to get to the bottom of your problem. Medicating without knowing WHAT you're medicating, isn't the answer.
Kind regards,
Karyn

[constantpain]

Thank you each for replying. Not that I want pn but after 5 months it seemed to make the most amount of sense/fit what I'm dealing with. I will look into all the different ideas that were listed.

I'll try to answer some of the questions asked of me.

First, the pain in the testicle area is rare and faint.

I have also seen PT and they did mention inguinal canal and psoas. However, I have pulled muscles before and torn ligaments in my ankles and have a torn laburm in my right shoulder. This pain is nothing like any of those injuries.

The dull pulling feeling is constantly about 1/2 way from my hip bone to my groin. I get zaps of 'lightning' all the time and feel like I go white in the face and feel flush from the pain.

As far as when I was sick, I did a battery of tests including STD, all negative. I do suffer from epstien barr and at times I can get sick easily and for a longer period of time than normal, this is especially true if I get run down, stressed, etc. When I got sick and tested for the hernia, the consensus was the hernia could easily have been there for a long period of time and be a total coincidence. Again, based on the clinics opinion that did the tests and meeting with 3 specialists and speaking with others that have hernias I don't think what I'm feeling is hernia related.

When I met with the surgeon a slight degree of cartilage wear in my right hip was detected. Only slightly above normal but nothing alarming for someone as active as I am according to the doctor. My lumbar MRI did show above normal levels of arthritis.

Again, the empty nagging, pulling hollow feeling is in my mid pelvis area.

When I sit in a chair the bulging, pinching sharp pain is also in the mid pelvis area. The pain in my legs and hip just happen when they happen.... regardless of sitting, standing.

I don't have any lower abdominal pain. I do every so often get a shooting pain into my right side rib cage. More a distraction than full on pain.

At this point I need to find a specialist that can help determine what is wrong with me. I have seen a qualified PT in my area and have done acupuncture a few times. Neither with great consistency, mainly due to the fact that neither gave me a solid feeling that continued visits would be the solution...

What I do know is I"m losing my mind due to pain and inactivity.

[Violet M]

The zaps of lightening sound typical of neuropathic pain but if it is a nerve the trick is to determine which nerve and what is causing it to misfire. Could it be a muscle in spasm that's impinging on it, a ligament strained allowing the pelvis to sag on that side causing an impingement or compression of a nerve? Sometimes it's a matter of ruling things out one by one. Typically people with PN have symptoms (primarily pain) in the distribution area of the pudendal nerve (the genital or anal area). One way to rule out the different nerves is with nerve blocks which carry a small risk and aren't 100% accurate but can be useful in the diagnosis.

Violet

[HerMajesty]

In addition to nerve blocks, sometimes simple palpation of the inguinal canal, of the type done during a manual exam for hernia, will reproduce the pain if the origin is in the inguinal canal. I agree with Violet, the pain is neuropathic - it's just a matter of which nerve. There is another male user of this board, cannot remember user name, who was diagnosed with PN based on symptoms and pudendal decompression surgery was recommended by a surgeon - but his problem turned out to be a hernia. It's very important to rule out the inguinal nerves first, becuase they are much easier to treat.

[constantpain]

Again, many thanks for taking the time to answer and provide input.

I decided to try the neurontin. I find it almost impossible to believe but after one day of being on the pills I feel the best I have felt in over 4+ months. My pain has almost completely disappeared. I have not had one instant of shooting pain and I have been doing regular activity the past 1.5 days. Including sitting normally at my computer and not a hint of pain. I have also been cleaning my house, moving heavy objects, vacuuming, etc without any pain, to the point that I am not even thinking about carefully moving my body. A freedom not felt in months. I still feel a little bit of discomfort, but not pain.

I am somewhat shell shocked that the meds worked that well and especially that quickly. I read that for most people if this medicine helps it can take weeks or longer. I also read that it may make you tires and clumsy. Both side affects couldn't be more opposite. I feel very wired and in touch with my senses. At the same time I was able to sleep, get good sleep and I woke up at 6:30, well before my alarm was set for.

If anyone has any exp. with this drug I'd like to hear it. Not sure if I will 'crash' from this med in a day, two or what? Not sure if this means I could stop taking it in a month, etc...? And not go back to being in pain.

Best regards,

[HerMajesty]

Neurontin helps with nerve conduction and some practitioners, my own included, make the claim that it can assist in nerve healing in doses of 1800mg or more daily. I take 2400mg but I worked up to that slowly, or I would have been high as a kite. I don't think it can cure you so that you can stop taking it and still feel well, if there is an underlying compression of the nerve. But, if there is an injured or irritated nerve with no current exacerbating factor, I suppose a temporary course of neurontin might help.
I am glad you are doing so well on this med. It does NOT, in my experience, make you feel good for a few days and then crash. If it works for you, I suspect it will keep working for you; until such time when and IF your underlying pathology gets worse. You might also put yourself into a flare by doing too much! If your pathology is stable or improving, the neurontin should be great for you.
Be aware that a common side effect is short term memory loss, trouble multitasking, losing things, and in general acting like you are in the early stages of senile dementia. Some of us who are on it call it "morontin" as a joke That's reversible when you get off the med though; it doesn't cause permanent brain damage.

[constantpain]

So far my exp. with nuerontin has been all over the map. From really high and speedy to literally not being able to get up off the couch after two days of being high. I think things have somewhat stabilized for the moment? Not sure. My extreme sharp shooting pain has been infrequent but overall pain is mild at minimum and painful during the day. There is no way I could resume normal activity but I'm not in really bad pain.

I am struggling with the fact that this just may be it for me moving forward. There has GOT to be an answer out there for me. At this rate, skiing, cycling, motorcycle riding and pretty much my career are out...