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My Story with ED (Long Version)

Updated: Sep 14, 2023

Introduction

Medicine is not an exact science, and most doctors work within a system that promotes managing symptoms rather than treating root causes. The medical system's problems are many and too complex to detail here. Nevertheless, my previous doctors and I made many mistakes in treating my ED.


I've had ED for about ten years. For most of that time, my doctors were telling me my hormone levels were fine when they weren't. There was no attempt by any of my doctors to find the root cause of my ED. Instead, they just gave me Viagra and Cialis. Until a couple of years ago, I never questioned their judgment. I assumed they were providing the best treatments available. Then, inevitably, the pills stopped working, and I started looking for answers.


Fortunately, I found my way to Dr. Rachael Ross, MD, Ph.D also known as Dr. Rachael. Dr. Rachael is unquestionably the best doctor I've worked with and a wonderful person who I admire‌. She is also one of those rare individuals who makes the world a better place.

Working with Dr. Rachael has helped me understand the mistakes my previous doctors and I made with my treatments. I hope by reading this that men seeking treatment for ED can avoid these mistakes.


How It All Started

Ten years ago, as of this writing, I started having symptoms of ED. At first, I noticed ‌I was having problems maintaining my erections, and then, a couple of months later, I could not get an erection at all. It came on suddenly and progressed rapidly over two or three months. Until then, I had no problems getting or maintaining an erection. I was proud of my abilities in bed, and I could usually last as long as I wanted during sex.

Because my ED came on so suddenly, I convinced myself my symptoms were probably due to stress. I was at the tail end of a terrible marriage and dealing with several other difficulties. However, there was no room for denial after a few months, and I scheduled an appointment with my doctor.


It surprised my primary care physician that a healthy 48-year-old man who took care of himself would get ED. I took no medications, exercised, and ate decent food. Was my lifestyle perfectly healthy? No. There certainly was room for improvement, but I took my health seriously, and by most measures, I was healthy and fit.


My doctor had my total testosterone tested, and it was "normal," so he referred me to an endocrinologist and an urologist for further testing. The endocrinologist tested me for many hormone levels, except for free and bioavailable testosterone. He told me that my hormone levels were "fine." The urologist tested my testosterone levels as well. He also injected my penis with a trimix compound to see if I would get an erection. I did, and as a result, he prescribed Viagra and Cialis and told me to come back for an implant when the pills stopped working. Even though I knew next to nothing about treating ED, I was stunned that his next step after Viagra was to resort to an implant.


What mistakes did my doctors make?

  • The endocrinologist had not requested free or bioavailable testosterone tests. Free testosterone is more critical than total testosterone. I don't want to accuse him of incompetence, but this isn't good.

  • The urologist did order tests for free and bioavailable testosterone. When I went back to look at them, the numbers were virtually identical to my more recent levels. My free and bioavailable testosterone levels were at unhealthy levels. Technically, my levels were barely within the normal range, but at the very least, he should have flagged them as a potential issue. Instead, he started treating my symptoms with Viagra and Cialis.

What mistakes did I make?

  • I did not educate myself. If I had done a little research, I would have caught my doctors' mistakes with my hormone levels.

  • I naively assumed my doctors knew what they were doing. Even when the urologist said that the next step was an implant, I stupidly didn't pursue a second opinion. Of course, I don't know if I would have ended up with a better urologist, and I didn't even realize that there are doctors who specialize in men's health. Nevertheless, I should have gotten a second opinion.

  • I started taking Viagra and Cialis without understanding the potential side effects. I will admit that they worked very well, but only for a few years.

  • Here is a link to the side effects of Viagra and Cialis - https://www.rxlist.com/cialis_vs_viagra/drugs-condition.htm


Fast forward eight years later

A few years later, I found and married the love of my life, and like most happily married couples, we had an active sex life to the extent my prescriptions allowed. Unfortunately, the insurance companies limited me to 4 pills a month. If you do the math, that's less than one per week, but we made the best of it.


Then two years ago (as of this writing), it was clear the pills were no longer working. After some obligatory time in denial again, I asked my doctor for a referral to an urologist. I didn't know it, but I had just followed Alice down the rabbit hole.

I wanted tests done to identify the root cause of my ED because I wondered if I might have a vascular issue. Unfortunately, the urologist was utterly uninterested in doing any testing besides my testosterone levels. He told me there were no treatments for venous insufficiency (leaky blood vessels). He also dismissed my concerns. "So you have ED. What's the big deal?" That was the second red flag.


Now, because the testing companies are online, I had direct access to my testosterone results and saw that my free and bioavailable testosterone levels were barely within the normal range. I studied exercise physiology in college, and I was a medic in the Army, so I understood that when medical tests are at the very high or low end of normal, it's time to ask questions and dig deeper. So I started educating myself by reviewing the research on testosterone. When I looked at the study used to establish the "normal" range for testosterone, I was astonished. Normal testosterone levels have very little correlation with healthy levels. In other words, the normal range does not represent the healthy range, although they do overlap. That's a critical point. Having normal testosterone levels is not the same as having healthy testosterone levels.


When I called the urologist about my test results, I expected he would tell me my levels were too low. He said my levels were normal, and there was no problem. That was red flag number three. I'd never been angry at a doctor until that conversation, but I was livid. This doctor didn't want to do proper testing and was dismissive that I had a "real problem" and didn't even know how to read testosterone results. I never contacted him again and began seeking doctors willing to treat my unhealthy testosterone levels.


What mistakes did the doctor make?

  • He made a mistake that many of my doctors have made, confusing normal testosterone levels with healthy levels. They are not the same, and doctors treating men's issues should know the difference.

  • He told me there was no way to treat venous insufficiency. He was wrong. There are treatments like ultrasound and p-shots.

  • He saw no use in identifying the root cause of my ED, and he was only interested in treating the symptoms.

  • He dismissed my problem. Having ED was an important issue to me, and it didn't fill me with confidence that the doctor didn't take my concerns seriously. It was a big deal to me, and I didn't appreciate his cavalier attitude.

What mistakes did I make?

  • Unfortunately, I became fixated on testosterone between the urologist's incompetence and my intellectual arrogance, and this distracted me from seeking proper treatment. I learned later on that my testosterone was a problem, but it was not "the problem." Treating testosterone alone rarely fixes ED.

  • I initially saw the urologist because I suspected I had a vascular issue, and I completely forgot about that because I became fixated on my testosterone levels. I wish now that I had continued to pursue vascular testing.

  • I didn't realize that ED usually has many contributing factors. I wanted a simple and easy fix. Unfortunately, treating the root causes of ED is generally not as straightforward as optimizing hormone levels.


A Year of Chasing my Tail

After I walked away from the urologist, I started seeing an endocrinologist willing to put me on testosterone. Unfortunately, her specialty was treating diabetes, so things didn't go well. She put me on a relatively low dose, and I responded. Then, a couple of weeks later, I stopped responding. She increased the dosage, and I responded again for a couple of weeks, and this pattern continued. These short-term responses became a frustrating pattern.

At one point, as my dosage was getting high, I noticed I was very emotional. It turns out that's a symptom of high estrogen. Some men will convert some exogenous testosterone to estrogen and need estrogen blockers. It turns out I'm one of those men. Unfortunately, my endocrinologist didn't pick up on the clues that I was converting testosterone to estrogen. She meant well but was working outside of her specialty, and I realized I needed to find a doctor specializing in treating men's issues.


I had read a book by Dr. Abraham Morgenthaler called Testosterone for Life: Recharge Your Vitality, Sex Drive, Muscle Mass, and Overall Health. It turned out the clinic he founded was near where I lived. So I started going there for treatment. Unfortunately, I saw the same pattern emerge. I would respond for a while, and then my response would fall off a cliff, and they didn't seem to have an explanation. The solution always seemed to be just out of reach. I was getting angry and frustrated, and I started again to look for someone who could give me answers and solutions.


What mistakes did the doctor make?

  • ED usually is multifactorial. My doctors either didn't understand or didn't communicate to me that testosterone was probably just a part of the problem, but it was not THE problem.

What mistakes did I make?

  • I remained fixated on testosterone. I had done a lot of research, and my reading indicated that the answer to my issues was getting my hormone levels optimized. Unfortunately, even though I did my homework, I didn't have the complete picture.


Dr. Rachael Becomes My Doctor

I discovered Dr. Rachael Ross on YouTube. I had never heard of her before, so I didn't know if she was "legit." Anyone can set up a YouTube channel, but as I watched more and more of her videos and did some research, I realized she was giving sound advice. Also, unlike most other doctors, she was clearly up on the latest research regarding testosterone, and she often discussed treatment options of which other doctors seemed unaware.

Shortly after I started watching her videos, I got an email about her first Weekend Intensive, and I signed up immediately. That turned out to be one of the best decisions in my life. The Intensive was an amazing experience, and I was so impressed with Dr. Rachael Ross that I jumped at the chance to continue working with her afterward.


I could go on and on about what a brilliant doctor Dr. Rachael is, but I'll mention a few things. When I started working with Dr. Rachael, I believed my issue was primarily low testosterone. Dr. Rachael showed me that getting my testosterone levels up and my hormones balanced was only part of the solution. Of course, it disappointed me to learn that the answer would not be as simple as I had hoped. It wasn't easy to realize I had been chasing my tail for nearly two years, but it was an important step for me.


As Dr. Rachael got my testosterone levels up to healthy levels, we learned that I'm predisposed to shunting some testosterone to estrogen. My predisposition to producing excess estrogen complicated things. When my estrogen levels get too high, I become psychologically unbalanced. I was an emotional, manic, and anxious mess for a while. I went through several episodes where I felt like I was on the verge of an emotional breakdown. Fortunately, I've learned to recognize the symptoms, and I can take an estrogen blocker to get back to normal. I remember telling Dr. Rachael that I felt like my mind was at war with itself. My previous doctors never recognized the symptoms when my estrogen was too high.



My Story Isn't Over Yet.

Over time, it has become apparent that my issues were more complex than I had initially imagined. I had low testosterone, low Nitrous Oxide levels, and vascular problems. Dr. Rachael has referred me to a new urologist to treat my vascular issues, and the early results are promising. I'm optimistic about where things are going for the first time in over two years, and I owe it all to Dr. Rachael.


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