My appointment was set for a Friday at 8:00am (04/24/2015). I had spent time researching local clinics and decided on a urologist across town. The procedure itself was no big deal. I have had dental cleanings that took longer and were more painful than my vasectomy. Aside from the awkward moment of being alone on a surgical table with my pants around my ankles, it went smoothly. He started with a single incision on the left for the left vas deferens, then crossed through the scrotal septum and did the right side through original incision. I remember him cauterizing quite a bit towards the end. I asked if everything was alright and he mumbled something about bleeding and hemostasis. Pinch of the needle, slice, cut, tie, burn, stitch and I was driving home a sterilized man. Overall, I felt pretty good. (This question always comes up – no, I was not sedated for the procedure).
I spent the next 24 hours following post op instructions. “Stay off your feet, ice, rest, don’t exercise, and don’t lift anything over 20lbs.” I watched some movies, cracked a few frozen vegetable jokes and chatted with friends who were anxiously waiting to hear about my experience. The next day was more of the same — ice, sleep, chuckle. Aside from a little tenderness down low, I was on my way to healing. That night, about 36 hours after the vasectomy, was my first hiccup. I was enjoying my 11lb newborn when my wife decided to snap a picture. As I brought my baby close to my face I felt a lightning bolt go through my right testicle to my navel. It wasn’t the worst pain I had ever felt but it certainly got my attention.
The area grew sore but it was bearable. I slept through the night but woke up feeling jittery. It was Sunday morning and I had to see an emergency patient at the office (I am a dentist). I remember struggling to maintain mental focus through the visit. I figured it was just pain induced anxiety. Healing takes time and I was determined to be patient. Monday and Tuesday were fine. I had some aches and pains but I was able to work through it. When I went to bed Tuesday night, I had no idea my life was about to change forever.
The Beginning of Things to Come: Vertigo and Loss of Sight
3:00am Wednesday morning (5 days post vasectomy), I awoke with severe vertigo. I spun for 5 minutes before falling back to sleep. When my alarm went off three hours later, I was no longer spinning but my balance was severely compromised. I remember getting to the bathroom by dragging my shoulder against the wall so I wouldn’t fall. I made it to the shower and began my morning routine. By this time, the dizziness was really bothering me. Together with the pain in my scrotum, I struggled with what was transpiring. Was it an illness? Was it the vasectomy? Surely my testicles couldn’t make my head spin. I stood in the shower palpating the area where the pain had started 5 days earlier when I felt my vision go out for the very first time. Being a dentist that has fixed many syncope incidents, I immediately laid down on the shower floor for the sake of my enamel. “One thousand one, one thousand two…” Not only had I not passed out, my vision wasn’t returning. When I realized I was alert but blind, I panicked. My wife woke up to me crawling back into bed screaming her name. After two minutes in bed, shampoo and all, the gray faded away and my vision returned. I remember an intense tingling in the back of my head, like pins and needles. This new sensation was accompanied by a sharp headache. It was very localized and extended up behind my right eye. I understood I had just had surgery, perhaps it just needed time to heal.
Vasectomy Side Effects No One Talks About
Headaches, Dizziness, and Nerve Pain
More than anything, I just wanted it to go away. I tried to be patient but my life and my health were crumbling in front of me. I was in pain, I was dizzy, and my urologist was in denial. Some days I could function and other days my pain and headache were so intense I could barely keep my eyes open. My pelvic pains were increasing in intensity and spreading to adjacent areas. By the time the pudendal neuralgia set in, I was checking in and out of emergency rooms on a weekly basis. For the first time in my life I was suicidal and had come to the realization that no amount of rest was going to bail me out of this mess. That is when I turned to doctors for help.
Up to this point in my life, I rarely saw doctors. Aside from the occasional school vaccine or wart removal, my health was boring. I’ve never had any major illnesses, surgeries, or concussions. I played a lot of sports as a kid but gave those up when I saw my friends getting injured. I have never had allergies besides the occasional seasonal sneeze. Since my vasectomy, I have seen an impressive number of specialists. Probably too many, but I was desperate.
Tinnitus and Vision Changes
My first appointment was with an ENT. I mention this one because looking back I think an opportunity for a diagnosis was missed early on. Symptoms were tinnitus that occasionally made a pulsatile whooshing sound, constant dizziness, chronic headache of 2 months, foggy vision, and neck pain. She did the Valsalva maneuver, watched my eyes, and concluded I was fine. I was also given a hearing test and the audiologist found a lack of acoustic reflex on one side. She suspected a neuroma of some sort but the ENT wasn’t convinced. Clearly, there needs to be more awareness about intracranial hypertension. Instead, I was on my way to the doctor referral merry go round.
Headaches with Vestibular Damage, Neck, Knee, and Pelvic Pain, Prostatitis and Pudendal Neuralgia
From ENT, I went to a neck specialist for the neck pain. He didn’t find anything and sent me back to urology for the scrotal pain. There were a couple of visits to an orthopedist when the knees, hips, and back began to hurt at the six month mark. Urology to neurology, with a few more stops at the ER with pelvic pain, prostatitis and pudendal neuralgia. Even though my crotch hurt, it was my headache that has gotten the most attention over the last three years. I have had 4 MRI’s on my brain including an upright MRI and MRA/MRV, all of which were negative. I spent a month on heavy doses of migraine medication but to no avail. I was diagnosed with a vestibular migraine until an oto-neurologist found 27% damage to my right middle ear. He concluded that it wasn’t a migraine but rather damage to my vestibular system. He couldn’t explain the headaches or post-surgical onset but it did explain the balance problems.
Finally, the Culprit: Intracranial Hypertension
I continued to see neurologists. On suspicion of multiple sclerosis and without plaques showing on an MRI, they ordered a lumbar puncture. I’ll never forget the radiologist’s reaction when he measured my opening pressure. The conversation was something about golf when he yelled with excitement, “twenty-six!” It had been 18 months of 24/7 headaches when he explained to me that I had intracranial hypertension. My first puncture showed an opening pressure of 26mmHg with elevated proteins in the cerebrospinal fluid. I was ecstatic! Not because I was miraculously cured but because there was finally an objective measurement of how I was feeling inside. Anyone who has navigated the medical system with mysterious symptoms and years of dead ends knows exactly what I am talking about. I had a glimmer of hope that I was on the road to answers and recovery.
Wait a Minute – Males Don’t Get Intracranial Hypertension
Next stop, Mayo Clinic. My first application with pelvic pain, testicular pain, pudendal neuralgia and chronic headache wasn’t enough to get an appointment. I was much more popular with elevated intracranial pressure. Unfortunately, my optimism was short lived. After one week in Minnesota, I left with a diagnosis of Chronic Pain and New Onset Daily Headache. I was given a prescription for Tramadol, Lyrica and a referral to their chronic pain clinic. Regarding the pressure, it was explained to me that males can’t get intracranial pressure. Therefore, the neurologist refused to diagnose me with pseudotumor cerebri (another name for intracranial hypertension). Both the intake physician and I were dumbfounded. So much so that she actually apologized to me when I left.
Next was their chronic pain clinic and self management pain program. I met with their pain specialist and received even more diagnoses; Central Sensitization Disorder, Fibromyalgia, and Chronic Multifactorial Fatigue Syndrome. The pain doc did acknowledge the abnormal pressure and requested a follow up spinal tap to confirm the validity of the first puncture. He also didn’t like that my glucose was erratic and my adrenals were abnormally low, so I had some follow up to do when I got back home.
My second spinal tap was similar to the first except I was much more nervous. My original spinal tap ended with an emergency epidural blood patch after 9 days of leaking CSF. I knew for certain I didn’t want to go through that again. My second pressure was just over 22mmHg and it was enough for Mayo Clinic to confirm that I did in fact have some kind of pressure disorder. From there I wore a blood glucose monitor for two weeks and endocrinology concluded that I wasn’t diabetic. My cortisol stimulation test showed secondary adrenal insufficiency until an AM cortisol test months later came back at 11, so I am now considered low normal. The only blood test that has been consistently abnormal from the beginning is hormones. My testosterone levels oscillate between 280-400 and I have heard every diagnosis from secondary hypogonadism to “low normal.” For the record, I am 36 years old and relatively skinny.
Additional Medical History
There is really not much more to the story. It has been three years of searching, doctor visits, pubmed, aches, pains, and frustration. My symptoms haven’t changed, I have simply tried to live around them. A short summary of the rest of my medical journey is below.
- Rheumatology – ANA, CRPs, and other tests normal
- Immunology – immune system healthy, negative for mast cell disorder
- Neurology – pseudotumor cerebri (26 and 22), MRI’s negative, early signs of papilledema that resolved, MRA/MRV normal
- Optometry – uveitis at 6 months post vasectomy that has since cleared up, negative for HLAB27
- Orthopedics – hip, back, knee pain. MRI’s of joints were insignificant except chondromalacia in the right knee and anterolisthesis at L5-S1 which may explain leg weakness and pain
- Ophthalmology – no more signs of uveitis, or papilledema, or optic nerve damage at 1.5 years post vasectomy
- Oto-neurology – right middle ear hypofunction (27%)
- Physical therapy – ilioinguinal neuropraxia creating weakness in hip flexors, core muscles, psoas, and abdominals. Abnormal gait and posture from neuromuscular dysfunction
- Radiology – full body CT with contrast at 3 months post vasectomy was insignificant
- Endocrinology – low testosterone and low cortisol
- Sleep apnea – Blood oxgyen level is normal until REM when it drops. Physician called it mild sleep apnea while Mayo considers it a sleep disorder consistent with Central Sensitization Disorder.
- Lyme testing – Negative twice. The first time was Elisa/Western Blot. The second test was Panel #B through IGenex.
- Urology – At month 3, I had blood in my urine and it was suspected I had a kidney stone. No stone found on film. I also had severe ketonuria. The original urologist saw that I was sterile. He deemed the vasectomy a success and dismissed me from his practice. Other urologists have diagnosed vasitis, chronic pelvic pain and post vasectomy pain syndrome. Ejaculate culture tested positive for Group B streptococcus at the 2-year mark. Ironically, my wife tested positive for Group B strep during her second pregnancy in 2009.
Three Years Post Vasectomy
Since my vasectomy, my body hasn’t been the same. I tend to split my symptoms into two groups, my head and my pelvis. I feel they are related but doctors have failed to make the connection, so I investigate them separately. I continue to struggle with my balance and my eyes seem to be part of that. Something as simple as looking at my phone while walking exacerbates the dizziness. I am in a better place mentally but I am not without my struggles. I have learned to endure the pain with deep breathing and distraction. I still have pain in my scrotum, more specifically my spermatic cord on the right side adjacent to my penis near my pubic bone. The pain radiates through my inguinal canal into my abdominals and over to my flank. Occasionally, I will have a flare up in the area of my gallbladder. For weeks after my vasectomy my stomach would gargle. Now, after a particularly fatty meal, I will get a sharp pain in my gallbladder that lasts for hours. Just last week I awoke to pain in my perineum. By early morning the nerve pain triggered a low back spasm that left me vomiting. Miraculously, I was able to drive home and passed out in a tub of hot water. I awoke to my wife crying at the floor of the bathtub.
The pudendal neuralgia comes and goes without warning. It is bad enough to put me on the floor. At one point, I had burning down my inner thigh that spontaneously migrated to my left forearm. This was the FIRST symptom on the left side of my body. There was suspicion of CRPS/RSD until one day when it spontaneously resolved. My knee, hip, and low back hurt constantly. The knee was first at three months, then the hip at six months, and eventually, my low back. I have developed muscle weakness on the right side in my pelvic region and it shows in my posture (torso leans to the left). It has affected my gait and my right arm no longer swings naturally when I walk. I have knots in the muscles of my back extending from my hip to my shoulder blade, shoulder, neck, masseter, and temporalis muscles on the right side. I am losing strength in my arms, often having to pause while washing my hair or brushing my teeth.
Professionally, I have been forced to limit myself to procedures that don’t require a sustained posture. It is my understanding that the majority of my pelvic pains are likely the result of nerve damage. According to multiple physical therapists, many of my troubles are from damage to the ilioinguinal nerve. Post Vasectomy Pain Syndrome (PVPS) is a common but under-reported side effect of vasectomy and affects hundreds of thousands of men worldwide. There have been three books written and several websites dedicated on PVPS. There are also hundreds of research papers detailing the complex management of post vasectomy complications, some literature reporting chronic pain in as many as 15% of patients. I realize I will most likely have to accept and deal with this pain for the rest of my life. However, it is the rest of my symptoms that make life more difficult.
My headache has been nonstop for three years and it feels like it has two parts. The sharp pain in the right sub-occipital area radiates behind my eye and above my eyebrow. It feels more like a tension headache that originates in my neck and shoulder. I have another headache that feels more like pressure in the upper occipital region. This headache seems to be associated with my cognitive symptoms. I have always been a very social person and now have a hard time with simple conversations. There are days when word finding is difficult. Periodically, patients have noticed the aphasia and will finish my sentences for me. There have been times where I forget where I am and where I live. I have even forgotten my birth date and middle name. I remember one instance when I called in a prescription and I couldn’t remember the word for the number “zero.” For three straight years, I have lived in a constant state of brain fog and lightheadedness that feels like a mix between the flu and never ending car sickness.
My symptoms are consistent with Lyme, MS, and fibromyalgia and other Central Sensitization Disorders. Mayo is convinced that it is nothing more than an overstimulated CNS from chronic pain. I find it peculiar that all of my symptoms are unilateral. Right side nerve damage in my scrotum, right side back pain, right side shoulder and neck pain, even my headache/eye pain is on the right side. Early on, I was able to get a full relief of symptoms taking Benadryl before bed. I would feel more rested and the brain fog would disappear just enough for me to get through work. There was a period where the insomnia was so bad that I turned to Tylenol PM for relief and incidentally found the connection. Benadryl no longer has this effect on me. Fortunately, insomnia is no longer an issue but I often find myself falling asleep as early as 3:00pm.
My symptoms are directly related to my sleep quality and stress levels. Hot baths with epsom salt are about the only thing that will help my headache. I learned after my second spinal tap that I could get my post spinal tap headache to disappear by lying flat in hot water for an hour.
I have tried the following prescriptions:
- Diamox, 125mg/day – no change in headache, tingling in hands affected work, did not try higher therapeutic doses, discontinued after 2 months on recommendation from neurologist
- Testosterone, IM (5 months), high libido, no change in symptoms
- Prednisone (2-3 weeks), no change in symptoms
- Cymbalta (3-4 months), felt worse mentally
- Verapamil (headache preventive, 4 months), no change in symptoms but did feel slight withdrawal with cessation
- Naratriptan (high dose for two weeks) no change in symptoms
- Lyrica (1 month) worsened brain fog, no change in symptoms
- Xanax, took once for anxiety
- NSAIDs, no change
- LDN (naltrexone 4.5mg before bed) currently taking, too early to report
I have had the following tests:
- MRI’s (brain x 4, hip, knee, low back) – WNL
- CT scan w/ contrast – WNL
- Scrotal ultrasounds – WNL
- Imaging of hips and kidneys – WNL
- MRA/MRV – WNL
- Lumbar puncture – 26 and 22
- Ejaculation culture tested positive for group B streptococcus
- Countless blood tests, many of which I don’t understand but I can list if needed
- MTHFR positive (heterozygote for C677T)
- Physical therapy for pelvic and joint pain
To say my health issues have consumed me would been an understatement. No matter how hard I try to move on, my headache is a constant reminder of what I am going through. The local vitamin aisle has become my workshop, as I sample any supplement that may have a positive impact on my health. A recent late night google binge landed me on an article showing intracranial pressure in returning astronauts. Alas, men can get it too! It is encouraging to see recent developments and progress towards solving the underlying causes of intracranial pressure. As luck would have it, I have started on a regular dose of allithiamine and have seen improvement in my daily fatigue. At this point, medicine has no solutions outside diuretics and ventricular shunts. My optic nerves are too healthy to justify surgery and high dose diuretics don’t allow me to practice dentistry. Until I can find answers, I am left to speculate and hypothesize what could be at the root of my troubles.
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This article was published originally on April 25, 2018.