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Posted By : Arsenalfc1996 - 4/19/2017 3:16 AM
Hi, I am a 21 years old man and I've been suffering from very painful and undiagnosed pelvic pain for about 15 years.

When the pain happens which is about once a week I experience extremely intense cramps and spasms in between my belly button and the lower end of my pubis. However I only feel pain when I am standing up or when I am urinating. The pain takes about one minute to stop completely once I sit down or lie in the fetal position. It lasts for around 5 to 6 hours each time. Also my belly button has been painful to touch ever since I was a kid and it still is now that I am a young adult.

Physical exercise is one of things that can trigger those cramps and because of this I haven't done any in the last 5 years. By the way I never felt pain while I was doing exercise, the pain would always happen about 30 minutes after I was done. But even now without ever doing any physical activity I still randomly get cramps usually once a week.

I have been to plenty of doctors already but they did not find what causes theses cramps or how to make them stop. Here is a list of the tests I have done: colonoscopy, endoscopy, ultrasound, CT scan, MRI of the pelvic area, blood tests, urine tests, stool tests and I've even tried physiotherapy and osteopathy. Thank you in advance for your help.

Posted By : straydog - 4/19/2017 8:21 AM
Hello & welcome to Healing Well. I have searched through the archives here at Healing Well & we have had some men post about this type of pain. Many found the culprit to be the Pudendal nerve was the culprit. Treatment consisted of nerve blocks, cryoblation of the nerve, Botox injections to a special physical therapy called the Graston Technique. Not every therapists knows this & it has to be done by someone that specializes in this. A great many people sought care with a specialty clinic and or a dr that specializes in pelvic pain only.

I know you have mentioned seeing numerous drs, just wanted to throw this out there. I do hope you can find the proper treatment that will give you relief.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : (Seashell) - 4/21/2017 1:25 AM
I am sorry to read that you have been experiencing pelvic pain of unknown origin for as long as you have. On-going pain is emotionally and physically exhausting.

Clinical research has been exploring pelvic pain where there is no identifiable cause - that is, pelvic pain where all manner of imaging studies is unable to identify a physical/anatomical finding that can explain the pain. The common denominator is that these individuals have traveled from physician to physician spanning several years, looking for a cause and ending up empty-handed.

What these clinicians are finding is that many cases of refractory pelvic pain can be attributed to sensory nerve endings that get entrapped or enmeshed in the omentum (the omentum is the apron of adipose tissue that lies atop the abdominal cavity).

Sensory nerve entrapment.

Pain is triggered when the individual moves in certain positions, unique to each person, pulling on the long-axis of the sensory nerve axon and dendrites. Pulling of the nerve's axon and dendrites stimulates the sensory nerve to replay a message to the brain and/or spinal cord.

You mention that you have not engaged in any exercise in 5 years, avoiding exercise as it has been a trigger of the pelvic pain. In your case, exercise incorporating stretching or reaching might easily pull on entrapped/enmeshed sensory nerve endings resulting in transient escalating pain episodes.

To describe what you/your physicians are looking for with sensory nerve root entrapment: Pin point herniations in the fatty apron of the omentum and/or in the aponeurosis that lines and covers the organs in the pelvis.

Susie (aka Straydog) brings up a likely culprit in the Pudendal nerve and its subsidiary branches. The pudendal nerve passes through the layers of the gluteus maximus and gluteus medius. In doing so, the nerve is easily compressed and irritated during movements or activities that involve the gluteal muscles.

Treatment options for both of the above scenarios:
1. Physical therapy for deep tissue massage employing the Graston Technique (picture taking a rake and untangling a mass of fallen leaves and light tree branches laying in the yard; so too, the Graston Technique is a specific deep tissue massage that untangles collagen fibers in the immediate connective tissue).
2. Physical therapists can also teach you how to do an "internal massage" of your pelvic floor via the rectum. Try not to be squeamish about learning "internal massage." You'd be amazed at how strong the pelvic floor and surrounding muscles can be when they are hyper-reactive and in a state of constant contraction. Like the grip of an alligator's jaw.
3. Botox injections to quiet overly contracting, hypertonic muscles of the pelvic floor (levator ani, pubis rectalis).

It is not in your best interests to avoid exercise for 5 years, and counting, due to reactive fear that exercise and movement might trigger an episode of pelvic pain.

If a component of your pelvic pain is sensory nerve entrapment, then it will behoove you to begin to move (ex. beginning yoga postures) your body to self-mobilize release of the trapped sensory nerve endings. Your pelvic pain will
diminish as these sensory nerve endings are freed.

You should look for a pelvic floor clinic at a hospital in your community. Pelvic floor clinics are not for women only. Women are not alone in enduring pelvic floor problems. Men, as you know all too well yourself, have pelvic floor dysfunction.
Pelvic floor clinics provide a multi-disciplinary approach that is often favorable in providing multiple clinical specialities and resources to cure the problem or relieve nagging symptoms.

Best wishes for a better tomorrow on the horizon,
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

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