The Silent Struggle of PFS: Ryan’s Story

My name is Ryan Clark, and I’m from Tynemouth, England. This is my story of how Post-Finasteride Syndrome (PFS) has devastated my life. Before encountering finasteride, commonly known as Propecia, I was a positive, outgoing young man with a fulfilling job, a passion for exercise, and a healthy lifestyle. My journey with PFS began when I noticed a small thinning spot on the back of my crown. Although I wasn’t overly concerned about hair loss, an advertisement for Propecia in a reputable newspaper caught my eye. It promoted the drug as a safe and effective cure for male pattern baldness. Driven by vanity, I decided to give it a try. This decision would become the worst mistake of my life.

The Onset of Symptoms

Initial Impact

Shortly after beginning the medication, I was suddenly hit by a severe wave of anxiety, unlike anything I had ever experienced. It was so overwhelming that I literally dropped to my knees in my garden, completely debilitated. This was the first of many terrifying symptoms. Suddenly, my life changed: I lost interest in everything I once loved—my work, my relationship, and even my basic desire to live. My sex drive vanished, and with it, the morning erections I had never given a second thought disappeared. My strength in the gym, which had always been a source of pride, declined drastically. When I approached my doctor, he dismissed my symptoms as personal stress, a conclusion that felt deeply wrong. However, I trusted the system and continued taking the drug.

The Worsening Condition

Over the years, as I continued taking finasteride on and off, my health deteriorated further. I developed testicular cancer, liver and pancreatic issues, and numerous other health problems. My facial features began to change—loss of masculinity, bone, and tissue loss altered my appearance drastically. I suffered from cognitive decline and emotional instability that made daily life an unbearable challenge. By 2017, I stopped producing sebum and developed serious urinary problems. Desperate for answers, I turned to the internet and found a community on Propecia Help, where I discovered that countless others were suffering from the same horrific symptoms. My initial relief at finding the source of my suffering quickly turned to despair as I realized that no one was getting better.

The Full Spectrum of Symptoms

Neurological and Cognitive Symptoms

• Insomnia: I struggle to fall asleep, and when I do, it’s often restless.
• Derealisation: A constant sense of being detached from reality.
• Suicidal Ideation: Frequent thoughts of ending my life due to the unbearable nature of my condition.
• Constant Feeling of Panic and Dread: A continuous state of anxiety with no identifiable source.
• Impaired Memory, Concentration, Processing, and Judgment: My cognitive abilities have declined significantly, making it difficult to perform even simple tasks.
• Severe Anxiety: Persistent and pervasive anxiety that disrupts every aspect of my life.
• Anhedonia: Complete loss of pleasure in activities I once enjoyed.
• Frequent Pressure Headaches: Constant headaches that feel like a tight band around my head.
• Confusion and Balance Issues: I often feel disoriented and have trouble maintaining my balance.
• Global Tingling and Numbness: A strange sensation of tingling and numbness that affects my entire body.
• Restless Legs: An uncontrollable urge to move my legs, especially at night.
• Altered Sense of Touch: My sense of touch feels distorted, making normal sensations uncomfortable.
• Phantom Nerve Impulses/Feelings: Strange, unprovoked sensations in my nerves that have no clear cause.

Sensory Symptoms

• Tinnitus and Pressure in Both Ears: A constant ringing in my ears, accompanied by an uncomfortable pressure.
• Vision Problems: My eyesight has deteriorated, and I often struggle with blurry vision.
• Dry, Burning Eyes: My eyes are constantly dry and burn, making it difficult to focus.
• Reduced Ear Wax and Mucus: A noticeable decrease in the production of ear wax and mucus.
• Reduced Taste and Loss of Smell: My sense of taste and smell have diminished significantly.
• Loss of Feeling in Hands and Feet: Numbness in my extremities has become a constant issue.

Oral and Dental Symptoms

• Receded and Bleeding Gums: My gums have receded, and they bleed easily.
• Sensitive Teeth and Loss of Enamel: My teeth have become incredibly sensitive, and I’ve lost enamel, making them vulnerable to damage.
• Jaw Bone Thinning/Loss and Recession: My jawbone has thinned and receded, altering the shape of my face.
• Cheekbone Loss and Recession: Similar to my jaw, my cheekbones have also receded.
• Skull and Facial Changes: My skull and facial structure have changed dramatically, making me nearly unrecognizable.

Cardiovascular Symptoms

• Lowered Body Temperature: I constantly feel cold, even in warm environments.
• Erratic Blood Pressure: My blood pressure fluctuates wildly, with no clear pattern.
• Cardiac Arrhythmia: I experience irregular heartbeats that can be quite alarming.
• Poor Circulation: My extremities are often cold, and my overall circulation has deteriorated.

Metabolic and Endocrine Symptoms

• No Feeling of Hunger/Fullness: My body no longer signals when I’m hungry or full, making it difficult to maintain proper nutrition.
• Severe Pancreatic Insufficiency: My pancreas no longer functions properly, affecting my digestion and overall health.
• Malnutrition: Despite eating a healthy diet, I suffer from malnutrition due to my body’s inability to absorb nutrients.
• Severe Dehydration: My body struggles to retain water, leaving me constantly dehydrated.
• Dark Urine: A sign of ongoing dehydration and possible kidney issues.
• No Sebum Production: My skin has become extremely dry due to the lack of sebum production.
• Rapid Aging: I’ve aged significantly in a short period, with thinning skin and a frail appearance.
• Extreme Weight Loss: I’ve lost a considerable amount of weight, mostly muscle mass.
• Loss of Muscle Strength, Mass, and Fullness: My muscles have wasted away, leaving me weak and frail.
• Loss of Bone Density: My bones have become brittle and fragile.
• Smaller Hands and Feet: My hands and feet have noticeably shrunk.
• Feminization: My body has developed traits typically associated with femininity, such as increased fat in certain areas and a loss of male characteristics.
• Elevated Cytokines (Inflammatory Markers): My body is in a constant state of inflammation.
• Insulin Resistance: My body no longer responds to insulin as it should, increasing my risk for diabetes.
• Cortisol Sensitivity: My stress hormones are out of balance, leading to extreme fatigue and anxiety.
• Estrogen Dominance: An imbalance in my hormone levels, with higher levels of estrogen.
• Testosterone Sensitivity: My body has become overly sensitive to testosterone, contributing to the loss of masculine traits.
• Androgen Deprivation: My body no longer responds properly to male hormones.
• Adrenal Fatigue: My adrenal glands are exhausted, leading to chronic fatigue.
• Thyroid Dysfunction: My thyroid no longer functions properly, affecting my metabolism and energy levels.

Dermatological Symptoms

• Loose, Thinning Skin: My skin has lost its elasticity and has become thin and fragile.
• Collagen and Subcutaneous Fat Loss: The loss of collagen and fat beneath my skin has left it sagging and wrinkled.
• Dry, Powdery, Scaly Skin: My skin is constantly dry and often peels or becomes scaly.
• Dermatitis: I suffer from frequent skin inflammations and rashes.

Musculoskeletal Symptoms

• Constant Stabbing Bone and Muscle Pain: I experience severe, constant pain in my bones and muscles.
• Loss of Cartilage, Tendon Shortening, and Atrophy: My joints and tendons have deteriorated, leading to pain and limited mobility.

Sexual and Reproductive Symptoms

• Impaired Sexual Desire and Erectile Dysfunction: I have lost all sexual desire and suffer from severe erectile dysfunction.
• Penile Tissue Atrophy: The tissue in my penis has atrophied, leading to significant shrinkage.
• Testicular Cysts: I’ve developed painful cysts in my testicles.
• Persistent Testicular Pain and Shrinkage: My testicles are constantly in pain and have shrunk significantly.
• Perineum Atrophy: The tissue around my perineum has also atrophied, leading to further complications.

Gastrointestinal Symptoms

• Multiple Food Intolerances: I’ve developed intolerances to many foods I used to eat without issue.
• Multiple Allergies: My body now reacts to numerous substances with allergic responses.
• Candida: I suffer from chronic yeast infections.
• SIBO (Small Intestinal Bacterial Overgrowth): My gut bacteria are out of balance, leading to digestive issues.
• Leaky Gut: My intestinal lining has become permeable, allowing toxins to enter my bloodstream.
• Altered Autoimmune Responses: My immune system has become hyperactive, attacking my own body.
• Slow Healing: My body takes much longer to heal from injuries.
• Chronic Inflammation: My entire body is in a state of constant inflammation.
• Inflamed Colon: My colon is frequently inflamed, leading to digestive discomfort.
• Malabsorption: My body struggles to absorb nutrients from the food I eat.
• Gluten/Lactose Intolerance: I can no longer tolerate gluten or lactose.
• Severe Constipation: I suffer from chronic constipation, making daily life extremely uncomfortable.
• Gut Dysbiosis: The balance of bacteria in my gut is severely disrupted.
• Limited Bile Production: My liver no longer produces sufficient bile for digestion.
• Low Stomach Acid: My stomach doesn’t produce enough acid to properly digest food.
• Reflux: I frequently suffer from acid reflux, which further complicates my digestion.
• Hiatal Hernia: I’ve developed a hiatal hernia, causing discomfort and difficulty eating.
• Prolapsed Rectal Wall: The wall of my rectum has weakened and prolapsed, leading to further complications.
• Hemorrhoids: I suffer from chronic hemorrhoids, adding to my discomfort.

Hepatic and Renal Symptoms

• Multiple Liver Tumors: Scans have revealed multiple tumors in my liver.
• Inflamed Spleen: My spleen is chronically inflamed, affecting my overall health.
• Multiple Organ Dysfunction: Many of my organs are no longer functioning properly.

Additional Symptoms

• Chronic Fatigue: I am constantly exhausted, regardless of how much rest I get.
• Post-Exercise Malaise: Physical activity leaves me feeling worse, not better.
• Hoarse Voice: My voice has become weak and hoarse.
• Dry Mouth: My mouth is constantly dry, making it difficult to speak and swallow.
• Nail and Regular Skin Infections: I suffer from frequent infections in my nails and skin.
• Neuropathy/Nerve Damage: My nerves are damaged, causing pain, tingling, and numbness.
• Altered Blood and Lipid Profiles: My blood work shows significant abnormalities.

Advocacy and Awareness

Despite my condition, I have become a proactive member of the PFS community, always ready to help others and actively involved in spreading awareness and pushing for research into PFS. I have reached out to health regulators and the media, sharing my story to highlight the urgent need for medical advancements and new approaches to treat PFS.

Call to Action

The authorities have failed consumers by doing next to nothing for years, snubbing sufferers’ claims, and then doing the bare minimum while blaming them for their symptoms. This lack of acknowledgment adds another layer to the already extreme suffering that PFS victims endure. We need funding for medical research, and this medication must be banned until its biological impact is fully understood. No more young men should suffer as I have, for the sake of pharmaceutical profits.

My experience with finasteride has been a nightmare, but by sharing my story, I hope to raise awareness and drive the search for treatments that could return us to normal. Let’s stick together, support ongoing research, and spread awareness about this devastating condition.