I am American.
My boyfriend found this forum on reddit.
I am 33 years old, 5’5", 140 lbs.
I was prescribed isotretinoin/Accutane by my dermatologist for acne.
I took 45 mg/day.
This medication was meant to treat my sebhorreic acne.
I took it for almost 10 months.
I do not remember the exact start and end dates of treatment.
Age when you quit? 32
I finished the last of the prescribed doses without tapering off.
How long into your usage did you notice the onset of side effects? Some of my symptoms developed quickly, others didn’t present themselves until after treatment was complete.
What side effects did you experience that have yet to resolve since discontinuation? Painful orgasms and lack of libido.
Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.
Sexual
[X] 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
Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[X] Severe Depression / Melancholy
[X] Suicidal Thoughts
Physical
[ ] 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
[X] Joint Pain
[ ] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[X] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[X] Increased hair loss
[X] Frequent urination
[ ] Lowered body temperature
[ ] Other (please explain)
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
I went to my OBGYN and they put me on a vaginally estrogen cream and some vitamins for my libido. Nothing has helped so far.
If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug?
I have not had a pre and post blood test.
Anything not listed in the above questions you’d like to share about your experience?
After discontinuation of Accutane, within a month or so, I started to experience very painful orgasms. It’s like an intense cramping that gets worse after climax and lasts about 10 minutes.
My story:
I was put on Accutane/Isotretinoin after several other failed attempts to resolve my hormonal acne through topical treatments and medications including spironolactone.
My doctor marketed the drug as having very intense side effects for 6-9 months, then, once treatment was done, my body would go back to normal. The side effects discussed were depression, birth defects in a fetus if I were to get pregnant, liver damage, dry skin and chapped lips, nose bleeds, dry eyes, etc. The doctor said they would closely monitor my blood work for liver enzymes and meet with me monthly to help overcome any serious side effects until completion of the medication.
Almost immediately after starting the medication, I started having the worst nose bleeds I’ve ever experienced in my life. Some lasted over an hour. I had several nose bleeds that caused me to call in to work and debilitated me for most of the day. The inside of my nose was raw and painful similar to a sunburn. I also experienced a complete loss of libido and severe exhaustion to where the simplest tasks felt so overwhelming. My lips were extremely chapped the entire time I was on the medication causing me to use a prescription ointment for them that I also started putting up my nose to alleviate the dryness as Vaseline wasn’t enough. I started to have severe liver pain that was constant and also extreme body aches that made me feel like I was in my 70s. Every movement hurt, my feet ached with every step I took and caused me to limp. My sex life dwindled to almost nothing. My live-in boyfriend began to feel unwanted and wished I never took the medication as he felt my acne wasn’t that bad. Prior to this, our sex life was great and healthy. I told him to just hang on as I was instructed by my doctor that there were no permanent lasting effects of this medication. I began experiencing extreme pain during penetration.
Fast forward to discontinuation of the drug. I noticed my chapped lips, the nose bleeds, and the aches started to go away. My libido and depression stayed the same. I started taking 4,000 IU of Vitamin D and St. Johns wort to help with my mood. This helped, but did not bring me back to my normal and I am still taking them.
A few months after I was off the medication, I started to experience painful orgasms that made my almost non-existent sex drive turn into something that I was actually scared of even doing and would recoil at the thought of. The only way to describe it is a crampong that begins at any normal point of pleasure, and then increases at the point of climax and lasts for approximately 10 minutes afterwards. At that time, I didn’t even link it to the medication, thinking something else was wrong and maintained denial of the whole thing with the hopes it would just go away. Eventually, I had no other choice but to tell my boyfriend. We both agreed for me to go to see my OBGYN.
My OB seemed concerned, but also confused by my symptoms. She advised me to start taking OLLY lovin libido vitamins and use an estrogen cream to help with my vaginal tenderness. The vitamins had no real effect on my symptoms and the insertion of the applicator inside my vagina for the estrogen cream was painful and the cream caused an uncomfortable burning sensation after application.
It wasn’t until after my visit with the OB that I realized the potential ties my symptoms had to Accutane. I have never heard of symptoms presenting themselves after discontinuation of a medication. I was very naive about the lasting effects of prescription drugs and the possibility of doctors being misinformed. My belief is that doctors are given an overview of medications that treat a specific condition and they either aren’t completely honest with their patients about the side effects, or are not given fair and honest warnings in the first place. My hope is that this post and website will either help deter someone else from taking this drug, or help draw some type of resolution to my symptoms. The thought of never experiencing pleasurable orgasms again for the rest of my life is a heartbreaking and overwhelming burden to carry.
Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY IALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY
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