- CASE FILE
A seemingly ascending infection from testicles to abdomen to heart and lungs and now brain.
ABOUT THIS CASE FILE
At my most recent general physicians appointment I broke down crying because I can’t manage my health anymore and have a normal life. A majority of my time is spent in bed sleeping because it’s the only way I know how to deal with the daily torture of my symptoms. He said that what I’m going through is now crippling me. I just don’t know what to do anymore and I came here hoping to find someone that may be going through the same thing or some that may know what’s going on with me. I can’t work, I can’t even do the things I used to enjoy because I don’t have the energy or health to even sit and watch a movie on my couch most of the time. I feel like I’m at the end of my rope here. This is going to be long because it’s a decade’s worth of history. To anyone who reads it, god bless you for taking the time to do so.
In April 2009, at 24 years old, I began having pain in my testicles and some penile discharge. I went to get screened at a local urgent care for STDs as I had a recent new partner. The physician insisted on not testing me and just treating me empirically for gonorrhea and chlamydia and said if I still felt bad in a week to return for testing. I took the prescribed course of antibiotics, but a week later I still wasn't feeling well. The penile discharge cleared up, but the testicle pain was still present, mainly in the right testicle. I returned to the clinic and they administered an STD panel through urethral swab. They told me that they would call me with results in the next few days. They didn’t call me with the results and I had to call them only to find out that they said the test was negative, but they may have messed up my testing somehow. They didn’t go into details on what that meant, but I wasn’t sure how to proceed at that point.
A few weeks go by and the testicle pain wasn’t resolving so I went to my general physician for evaluation and told them what I had been going through including my visits to the urgent care clinic. The physician said he had no idea and asked if I’d patiently wait for him to check some medical texts. He comes back and says he’s going to refer me to a urologist as he wasn’t sure what the cause of pain was.
I visit the urologist a few weeks later, May of 2009, and upon physical examination he doesn’t notice any abnormalities, nor express any medical opinion on what could be going on, but orders a testicular ultrasound to make sure any testicular torsion isn’t going on. Testicular ultrasound comes back negative for any issues or abnormalities. June of 2009, I return to the urologist who says he’s going to prescribe me what he refers to as a “Superman” dose of Levaquin that I am to take over the course of what seemed like a month. He told me to return after that if I’m still having the pain in the testicles. During that time I start to experience intermittent lower abdominal pains that shoot down through to my prostate along with the testicular pain.
I finish the dose as prescribed and I’m still having significant pain in my right testicle, now accompanied by the abdominal and prostate pains. July 2009, I return to the urologist for further evaluation and he essentially said that he had no idea and that I should return to my general physician for evaluation. I return to my general physician around that same time and they had no further medical opinion to give on my case.
From August through December of 2009 I just deal with the pain as I have no idea how to proceed.
January 2010, I start to experience immense diffuse and traveling abdominal pains, but often focusing in the upper right quadrant of my abdomen, as well as some trouble swallowing foods without getting them stuck in my esophagus. I go to a new general physician to get evaluated and explained to her the history I’ve been having over the past 9 months. She refers me to a gastroenterologist for evaluation.
February of 2010, I visit my new gastroenterologist and I present my case to him. He’s just as stumped as the previous physicians and wants me to have an endoscopy and colonoscopy to see if he can find anything going on internally.
In June 2010, I have the colonoscopy and endoscopy performed. The only findings were a few superficial ulcers in my duodenum and that I have eosinophilic esophagitis, which is typically of unknown cause, but they know that it’s in reaction to something else that causes the eosinophils in your blood to attack that structure and causes my esophagus to essentially become accordion or slinky like, which is what’s causing the trouble swallowing. The gastroenterologist has no idea what the cause of the eosinophilic esophagitis could be and prescribes me Prilosec for the ulcers and to return after that course to see if it helped the abdominal pain.
I returned for a follow up with the gastroenterologist after finishing the course of Prilosec with no changes. He suggests that we could do food allergy testing, but that he doesn’t think it will yield any results. He instead orders a CT scan with contrast dye of my abdomen to see if we can find a cause.
July 2010, I have the CT scan performed at my physicians office. Not even an hour after having the scan completed, my gastroenterologist calls me frantically saying that I need to get to a surgeon immediately because my appendix is enlarged. I go see a surgeon and he evaluates me, but I’m not experiencing any pain associated with having appendicitis and that the size of my appendix according to the CT scan is concerning, but doesn’t warrant immediate removal, especially if I’m not experiencing abdominal pain in the area of my appendix in the lower right quadrant. He told me that I’d be writing in pain should it need removal. He suggested I return home and just exercise cautious observation of any symptoms he described to me that would associate with the need of removal of my appendix.
A few weeks go by and I start to notice a hint of pain in the area of my appendix. I go to the hospital for evaluation and they didn’t believe me at first because they said I would be in tremendous pain from it. They did a CT scan and found that my appendix had doubled in size and were surprised that I wasn’t in much pain. The surgeon came in and they immediately took me back. They hoped that this was the cause of my abdominal pain all along and wanted to reevaluate me in a month after my surgical wounds had healed.
September 2010, a month goes by after surgery and I’m still experiencing the same abdominal pain that I had prior. The surgeon said that he did some exploring after removing my appendix and couldn’t find anything else inflamed or any other abnormalities. I return to my gastroenterologist and he said that I should return to my general physician for evaluation as he had exhausted all possible causes from his end, but that he thought something underlying was going on to cause my issues.
I returned to my general physician for reevaluation at the beginning of October 2010 and they had basically no idea what was going on.
November 2010, I woke up one morning with a fever of 101 degrees Fahrenheit, generally felt unwell, extremely fatigued, body and joint aches in my hands and knees, deep cough, shortness of breath, blurry and dry eyes, as well as the testicle and abdominal pain that I had already been experiencing prior. I visit my general physician and they start me on a course of Prednisone to see if it helps. My fever continued for 3 weeks straight as well as carrying all the previous symptoms with me. I saw my general physician several times for management over the course of those 3 weeks and they wanted me to see a rheumatologist for further evaluation.
December 2010, I was still experiencing all of the same symptoms from November, minus the fever, and now it’s accompanied by red acne that forms into pustules on my back, chest and arms, as wells as getting flaky raw red skin in my mustache and chin areas. I see the rheumatologist who advises me to take time off from school because of the severity of my case. She does thorough testing, including genetic testing to see if I’m predisposed for any rheumatological conditions. While genetic testing came back negative for predisposition, I was testing mildly positive for ANA, which she said could suggest a rheumatological condition or something underlying like an infection that’s triggering these blood results. She discussed the possibility of something called reactive arthritis which often has a preceding infection, one of which is gonorrhea. We discussed how all this had began the prior year with me visiting a clinic for a suspected STD. Upon further investigation, not only does gonorrhea cause this condition, but a continuing disseminated gonorrhea infection can exacerbate it and include the symptoms I’m experiencing. She wants me to get evaluated by a larger medical facility and sends me to their rheumatology department.
January 2011, I’m still experiencing all the symptoms that I was in December and it’s really taken over my life. I’m not doing much besides laying in bed and trying to sleep off the illness. I see the rheumatologist at the larger medical facility for evaluation and he repeats all the same testing that my previous rheumatologist had. He said he suspects that he’ll get the same results that she did and that from looking at my case he doesn’t think that it is something rheumatology related, but something underlying causing these issues and that he’s not sure what. He wants me to return to my rheumatologist for the results of the testing he orders and for follow up treatment. A few weeks later I return to my first rheumatologist and she says all the results were the same and that she’s not sure how to proceed and sends me back to my general physician.
February 2011, I return to my general physician who has given up on my case and I’m left no knowing how to proceed. I spend the course of the next 2 years trying to manage my symptoms on my own with very few physician visits because I keep running into people saying that it’s something underlying and then returning me to my general physician who has given up on my case. For a large part, I learn how to manage my symptoms on my own and return to somewhat of a normal life, but they get worse with time.
The fever largely never came back, but I still carry with me a chronic deep cough, extreme fatigue, testicular pain, abdominal pain, joint pain, blurry and dry eyes, as well as generally feeling unwell.
March 2013, I get really sick again like I did in November of 2010 and it takes me the better part of 2 months to recover back to some semblance of normalcy.
June 2014, I began having rapid palpitations going as high as 190 from my heart that last 30 seconds to a minute, but they are happening upwards of 20 times a day and make me feel like I’m going to pass out. They catch an episode of it in the ER and we discuss my history. The ER physician says it sounds like something underlying is going on and he wants me to see a new general physician and refers me to a cardiologist as well.
July 2014, I began seeing the new general physician and present my case. He sends me to several other specialists (Urology, pulmonology, infectious disease) to evaluate my case on top of my visit to the new cardiologist.
Through 2014 and 2015 I get passed around to several cardiologist, each stumped with my case and what could be causing my palpitations and feeling like I’m going to pass out. They put me on a beta blocker called Atenolol that largely helps with the palpitations for quite sometime, but I still get the occasional feeling like I’m going to pass out. They order several cardiac tests (stress test, EKG, ultrasound, and catheter pressure testing) that all that come back normal.
During my various visits with other specialists in 2014 and 2015, they all have no clue what’s going on and all remark that they think something larger underlying is going on and return me to my general physician, except for the infectious disease doctor. I discuss with the infectious disease doctor how this all began with the STD testing and she said that a disseminated gonococcal infection is incredibly rare and hard to test for. That, if suspected, they just treat with a large course of antibiotics, but if they were wrong in their suspicion that it could lead me to antibiotic resistance for taking such a massive dose of antibiotics. She wants me to see her colleague at a larger medical facility and refers me out.
November 2015 in 2016, I began seeing the infectious disease physician at the larger medical facility over the course of several months. We discussed my case at length and he had no idea what to make of it, but ordered extensive testing that showed mild abnormalities on some things, but nothing that pointed concretely to anything and sent me back to my general physician.
Early 2016, I return to my general physician who just suggests we meet every 6 months for evaluation of how I’m doing to see if anything new pops up. Meanwhile, I’m left to deal with the testicular pain, abdominal pain, shortness of breath, deep cough, extreme fatigue, blurry and dry eyes, joint pain all without any way to manage them. The heart palpitations were somewhat managed by the beta blocker that I was prescribed, but I could always feels symptoms lingering in the background and feelings like I was going to pass out would emerge every so often. During our regular evaluations my blood work would show regular abnormalities in some values with my kidney function, a chronic vitamin D deficiency, potassium levels changing, and sometimes elevated white cell counts.
Mid 2017, I began getting a consistent feeling of pressure in the back of my head with no pain. Just a lot of pressure. I return to my general physician who refers me to a neurologist. Neurologist has no idea what’s going on and returns me to my physician. The pressure comes and goes, but gets really intense. Again, I’m left to manage something on my own that has no explanation.
October 2018, the pressure becomes unbearable and I visit my general physician. They want me to get a renal ultrasound since my kidney blood work has been showing abnormal results. During the ultrasound they find that my spleen is enlarged and some of my blood work showed elevated white blood cells. They refer me to an oncologist for evaluation.
November 2018, I have my visit with the oncologist. She said we would do a series of testing that would inform where we went from there. She ordered a CT scan of my spleen to see if it was actually enlarged as an ultrasound isn’t the standard of determining spleen enlargement. CT scan came back normal. Blood work returned slightly abnormal with a small stable population of T cells doing something and she said we would retest it three months later.
February 2019, I see a new urologist for the testicular pain and tell them about my case history. They agree that the testicular pain could have stemmed from an STD, but they can’t be sure since it’s so far out from the original event. They agree to do a scrotal exploration surgery to see if they can find anything abnormal since I’m experiencing a considerable amount of pain.
April 2019, I have my follow up visit with the oncologist. She said my blood work was still slightly abnormal, but with all the health problems I’ve had over the past 10 years that no one has been able to diagnose, she’s not sure if it’s cancer or the result of my T cells reacting to what other things have been going on with me. She wants me to retest again in 6 months.
May 2019, I have my scrotal exploration surgery. The urologist said that he noticed some signs of testicular torsion and affixed my testicles so that it couldn’t happen again. A few days after surgery I began feeling like I was going to pass out and went to the hospital. They couldn’t find any abnormalities, with my heart rhythm, but they said that I looked awful when I came in. I also had a follow up with my urologist since I’m still experiencing pain in my right testicle and I have to see what my next options are for dealing with this.
Since surgery in May, I’ve daily felt like my heart is going to stop functioning. It just feels like I’m going to drop dead at any moment and the atenolol I was taking exacerbates the feeling. I’ve seen my general physician, my cardiologists, and been in the hospital 4 times since my surgery in May with these feelings like my heart is stopping and no one can seem to figure it out. It feels like I’m dying. Anxiety has been ruled out by a psychologist, but to me it feels like it’s an extension of my previous symptoms getting worse.
Like I said at the beginning, at my most recent general physicians appointment I broke down crying because I can’t manage my health anymore and have a normal life. I just don’t know what to do anymore and I came here hoping to find someone that may be going through the same thing or some that may know what’s going on with me. I can’t work, I can’t even do the things I used to enjoy. It took me quite a few sessions to write this just because I didn’t have the energy to do it in one. Thanks again for reading.