Post Accutane damaged

Hi, all,

I am from the US, and I found this forum in another group I belong to for Accutane survivors.

I am a woman, currently 24 years old, 5’5", and 140lbs.

I was prescribed accutane/isotretinoin for 5.5 months when I was 16 years old. Approximately July to November or 2011. I don’t remember the exact dosage right now, but will look in my records. I took a pill twice daily for those 5.5 months.

My family doctor referred me to a dermatologist for the purpose of getting accutane to treat my acne. Looking back, definitely not worth it. My skin scars easily and I do have many scars on my face, chest, shoulders, and back due to the deep painful acne I used to have, but what I’ve been through since is just not worth it.

I tapered the medicine off as directed by the doctor, and 5.5 months was my full regimen.

I started noticing that my hair and skin were very dry about two months into taking the drug, which has continued to today with no improvement. Shortly after stopping accutane, I developed terrible gastrointestinal problems. I couldn’t eat anything without feeling nauseous and in pain, almost everything ate was either thrown up or gave me diarrhea. I tried gluten free, dairy free, Atkins, ketogenic, vegetarian, and any diet that I came across that even sounded like it might help. I dropped about twenty pounds over six months or so. I was hospitalized three times for related issues from 2012 to 2020, and after the last hospitalization I had my gallbladder removed. This has helped so much and improved my quality of life exponentially.

Symptoms updated March 2020

Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
Suicidal Thoughts

Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Prostate pain
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
Frequent urination
Lowered body temperature

Other (please explain)

-Prescriptions for managing symptoms (zofran, budesonide, dicyclomine, and several others. Will check records)
-Hospitalized twice in 2012 for approximately 4 weeks (2 weeks in hospital, one week home, back to hospital for 2 weeks, back home). Severe drop in blood pressure, dehydration, vomiting, diarrhea, blood in both, lethargic… No diagnosis, no help. They told my parents I could have cancer or several other severe and life threatening diseases, all tests came back negative. MRIs, CT scans, Mekle scan, ultrasounds, colonoscopy/endoscopy. No food/water orally while hospitalized, only saline IV. Lost another 20lbs while in hospital, severely malnourished and underweight. Before being admitted the second time my mom told me I almost died. The nurses pushed her out of my room and said they were losing me.
-Constant monitoring of food. Very restricted, limited diet. Nothing spicy, nothing fatty, no red meat, no pork, nothing greasy, etc. When going out, I had to look at online menus or call ahead to make sure there was something I thought I could eat.
-Hospitalized in 2015 (during a huge flood in the area where I lived, I could only get to a clinic) where they gave me an iv and sent me home.
-Hospitalized twice in 2020, ER visit for drop in blood pressure, vomiting, diarrhea, extreme weakness. Given iv, morphine, monitored and sent home. Referred to gastro specialist, scheduled testing, back in ER two weeks later. Admitted to hospital for five days. Monitored, testing rushed, got first definitive result: low gallbladder function. Two doctors said it was probably fine, two said it should have come out years ago. Scheduled surgery, got it removed, immediate and significant improvement. When the results came back the pathologist said it was in terrible shape, barely functioning, covered in lesions, just very sick.

No known hormonal changes.


Dear sckylie,

Welcome to our forum! I am deeply sorry that you have been suffering so severely for so long! You have been through a lot with all the hospitalizations. I am glad you found some relief, although it required the removal of an organ.

Please take our patient survey (Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate). It is designed to create systematic data about the symptomatology of our patient groups. We have already received some encouraging feedback from scientists who find the data interesting. But as you can tell from the counter above, participation from the Accutane community is lacking. Hence, it would be very helpful for you to take the survey and promote it in Accutane patient groups. We really need more participants from the Accutane community. Would you mind telling where exactly you were made aware of our survey?

Thank you and good luck!

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