Undiognosed debilitating pain

[lilbigman Senior Member Member of the Month June 2015 Find all posts View Profile Close lilbigman]

I know this isn't necessarily an injury, but was hoping someone out their has had the same experience and has found some answers. Or has some knowledge in the area that will help me and my doctors find answers. I have searched the internet for hours and have only found others with the same problem and no answers.

The best way I can describe it is it feels like there is a cord that runs from my belly button all the way through the tip of my penis. When I have an "episode" we will call it, I have intense pain when I straighten my body out. It almost feels like a cord that is being stretched too far. If I stay in a fetal position the pain goes away, but as soon as I straighten out I get intense pain. I also will feel a burning when I pee, but only when the pain is intense enough that I can't fully straighten out. The pain is also intensified if I push on my belly just below the belly button and will radiate for several minutes to hours and then abate so long as I stay in a fetal position.

Looking back I have had this ever since I was a child. Also my belly button has always been very sensitive. I don't like it touched at all as it will bring on pain when doing so. I used to wonder if something got screwed up when they cut the umbilical cord.

Now this thing comes and goes and I have no idea the cause. Sometimes it will be years in between episodes and other times it will happen a few times a year. It will usually clear up within a few days, but this last episode is going on 2 weeks now. I have been to the doctor twice now. Once about 6 years ago when it was so bad I couldn't get out of bed and when I did I had to stay hunched over or suffer the consequences. My doctor was fairly certain it was an STI or possibly a UTI. I had the battery of tests that all came back negative and my doctor basically said, I don't know what it could be, their is no cord that runs from your penis to your belly button. The pain went away with in a few days and have only had a few minor (barely noticeable) episodes since then until recently. Again this has flared up and again I have gone to a medical professional for help. Completely different doctor in a completely different city. After talking with him, he ordered a full bout of STI tests. Chlamydia, Gonorrhea, Syphilis, Hepatitas A, B, and C, HIV, and Herpes along with UTI test (that I more or less pushed for) as he thought it was most likely an STI. Again all test came back negative as did the UTI tests. And again I am left with I don't know what it is as an answer.

Now I plan to take this further this time and speak with a urologist. However from what I have found on the internet this will most likely not get me very far either as it seems there are many others with the same issue that have not found any answers. So, basically I am taking a shot in the dark here in hopes that someone within the community may have had the same issue and found answers or if someone would have an idea of what it could possibly be so that I can bring it to the attention of my urologist so that I don't waste time and money on fruitless testing.

Here is a link that will help explain what I am experiencing and what others have done and how they explain the condition. Severe pulling pain in belly button and penis. - Undiagnosed Symptoms - MedHelp

Help? Someone?



update: I'm thinking of suggesting an umbilical hernia pressing on a nerve. That or possibly an alien patiently waiting to burst out from inside me.

[TheZZMan Moderator Member of the Month Sept 2018PEGym Hero Find all posts View Profile Close TheZZMan]

Have you ever gone to a chiropractor? Could be a loose or bulging disc that pops out from time to time and works itself back once you twist just right. Or possibly a pinched nerve, although that usually means numbness. I have to visit my chiropractor around 2 times a year for adjustments for lower back issues. If nothing else, it feels good to have your back cracked.

[CUSP82 Administrator Admin of the Month Dec 2014PEGym Hero Find all posts View Profile Close CUSP82]

Have you ever got into a hot bath when you are in pain?

[lilbigman Senior Member Member of the Month June 2015 Find all posts View Profile Close lilbigman]

No, I haven't. Actually, I really should as my job is very physical and would most likely benefit from it. I don't believe this would be the cause of this particular problem though as I have had this issue since I was a child. I have a vague memory of touching my belly button when I was about 8-10 yrs old and having severe pain for a couple of days afterwords. This pain radiates from my belly button to the tip of my penis, and is lessened when I curl up in a fetal position. It's best described as a sharp pulling sensation. A short vas deferens maybe? Although if you look at the link you will find that there are women that experience this as well. They describe it as a cord that stretches from their belly button to clit.

[lilbigman Senior Member Member of the Month June 2015 Find all posts View Profile Close lilbigman]

Have you ever got into a hot bath when you are in pain?

I can't say I have tried. Are you asking if it alleviates the symptoms? I could test it out and let you know.

[TheGreatDivider Senior Member Member of the Month Dec 2015 Find all posts View Profile Close TheGreatDivider]

Could it be a hernia?

[lilbigman Senior Member Member of the Month June 2015 Find all posts View Profile Close lilbigman]

Could it be a hernia?

That's what I thought too. Doctors seem to be more convinced that it is an STI than any other type of injury. I brought that up and was told its not very likely as I have no bulging or can correlate a specific incident that caused it. For example this time it started after 3 days off of work with no real strenuous activity.

[Jackxxx Banned Find all posts View Profile Close Jackxxx]

It sounds to me like if could be related to a nerve. And as you mentioned, I thought while reading that if could be related to cutting the umbilical cord. Certainly very hard to diagnose, and certainly the doctors you have seen are in the wrong path like most of the time.

Does the "flare" comes up after specific circumstances or is just completely random?

[lilbigman Senior Member Member of the Month June 2015 Find all posts View Profile Close lilbigman]

It sounds to me like if could be related to a nerve. And as you mentioned, I thought while reading that if could be related to cutting the umbilical cord. Certainly very hard to diagnose, and certainly the doctors you have seen are in the wrong path like most of the time.

Does the "flare" comes up after specific circumstances or is just completely random?

That's a very good question. I have been wracking my brain trying to find a correlation with it. Foods I eat, drinking, exercises, ect... and can not really come up with anything. The only thing that I can do that will almost assuredly cause this pain is to mess around with my belly button.

[jockinthebox Retired Moderator Member of the Month May 2015PEGym Hero Find all posts View Profile Close jockinthebox]

Could it be a hernia?

THAT^^^ would be my guess, as well. Could be a small intestinal hernia or kink possibly irritated by diet or twisting the intestines (or constipation maybe?) or from your work possibly. Ever tried documenting your diet or physical activity just before an episode?

[TheGreatDivider Senior Member Member of the Month Dec 2015 Find all posts View Profile Close TheGreatDivider]

Have they given you any physical tests?

[CUSP82 Administrator Admin of the Month Dec 2014PEGym Hero Find all posts View Profile Close CUSP82]

I can't say I have tried. Are you asking if it alleviates the symptoms? I could test it out and let you know.

Yes I am. Try it.

[lilbigman Senior Member Member of the Month June 2015 Find all posts View Profile Close lilbigman]

THAT^^^ would be my guess, as well. Could be a small intestinal hernia or kink possibly irritated by diet or twisting the intestines (or constipation maybe?) or from your work possibly. Ever tried documenting your diet or physical activity just before an episode?

No, I haven't, but if I ever want to figure this out, that would be a good place to start. It can be years in between episodes and usually goes away within a couple days so I haven't stressed to much about it. But this time it seems to be sticking around unusually long. I will start a log and see if over time I can see a correlation.

[lilbigman Senior Member Member of the Month June 2015 Find all posts View Profile Close lilbigman]

Have they given you any physical tests?

Nope, just a full battery of STI and UTI tests in both times I have been to the doctor. Other than pushing on my stomach and feeling the lymph nodes in my groin and physical examination of my penis looking for signs of STI's.

[TheGreatDivider Senior Member Member of the Month Dec 2015 Find all posts View Profile Close TheGreatDivider]

Nope, just a full battery of STI and UTI tests in both times I have been to the doctor. Other than pushing on my stomach and feeling the lymph nodes in my groin and physical examination of my penis looking for signs of STI's.

And all your tests for STIs came back negative?