Accutane user just beginning to put the pieces tgether

Where are you from (country)? USA

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) I found this forum searching for information about 5-alpha-reductace inhibitors and their long term side effects.

What is your current age, height, weight? I’m Female in my early 30’s

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? I took Isotretinion for 9 month at a lower than regular does due to my small stature.

How old were you, and WHEN (date) did you start the drug? I was 17 years old.

How long into your usage did you notice the onset of side effects? I was attending a performing arts school as a vocal major and would practice singing for sometimes up to 4 hours per day. When I began taking the medication, I noticed that my throat was getting very dry and I was having trouble singing without pain. I thought it would go away once I completed the medication but it never did.

What side effects did you experience that have yet to resolve since discontinuation?
I have extremely dry eyes, dry skin, dry lips, dry mouth, throat, etc.
I have “allergy” symptoms and “non allergic rhinitis”, and have recently been diagnosed with “asthma”. I have sore throats and swollen glands constantlyyyy and cannot sing properly. My voice gets tired very quickly. I have a chronic cough and post-nasal drip. I’ve always been VERY clear that these symptoms are from the medication, as I never ever struggled with them prior, and would have been hyper aware of them because they would have impacted my singing on a daily basis.

It is only within the last 1.5 years, upon finally finding knowledgeable medical practitioners, that I have begun to realize that my sexual dysfunction is also likely due to my use of Accutane. For years and years I have had pain and oversensitivity in my genitals. Doctors told me it was in my head or because I was not sexually experienced. About 7 years ago I developed horrible stinging pain when urinating as well as low back/sacrum pain. My wonderful current pelvic PT tells me that what has happened is that I have developed pelvic floor spasms from years of muscle guarding the area. I have finally been diagnosed with vestibulodynia (which for those who are not familiar, means chronic unexplainable pain in the genital vestibular tissue). I was recently referred to a specialist who tested my testosterone and DHT levels. To my shock, they came back extremely low. My doctor asked me if I’d taken birth control pills before the onset of the pain and I said no. He then asked me if I had ever taken retinol medication like Accutane and my jaw almost hit the ground. I’ve been doing as much research as I can to understand how the medication impacts DHT absorption, as I understand it to be the main androgen responsible for vestibulodynia pain. I had no idea there were so many other people suffering from pelvic pain after taking these meds.

I have currently been on topical T and DHT for a couple of months. My DHT levels are still undetectable. I am cautiously optimistic but fear that having been dealing with this so long, there are so many secondary muscular and fascia related problems in the area that will make it difficult to determine if the hormones are working. My first goal is to get the levels where the doctor wants them.

I cannot describe the psychological and emotional impact that entering adulthood and becoming sexually active with excruciating pelvic pain has had on my life. I’ve seen dozens of doctors, most of whom were incredibly insensitive and made me feel ashamed of my body and made me doubt my ability to be in a loving and healthy romantic relationship. Losing the ability to sing, whether it would have become a career or just one of my absolute favorite hobbies, has also been devastating. I am currently fighting parasitic infection from over-use of antibiotics I was prescribed to treat what doctors assumed were chronic Urinary Tract Infections, but were actually pelvic floor dysfunction/vestibulodynia. It is possible that there are other Accutane-related reasons that my digestive system is so weak, so I’m trying to inform myself about those as well (I have chronic constipation but that can also be from the pelvic floor issues). The lack of medical knowledge about these issues is heartbreaking.

I am determined to heal and to help protect others from this absolute poison that has robbed me of so much. I really appreciate the support of this forum and organization. Thank you for listening to my story and for caring. Just knowing I’m not alone makes things so much easier <3

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It’s incredible that your doctor made a correlation between your symptoms and Accutane/retinols. What was it in particular that made him believe you might be suffering from post-drug complications?

If you are not aware, we are conducting a post-drug symptoms survey in hopes of generating data to present to prospective researchers interested in these conditions. We are badly in need of both post-Accutane patients and female respondents.

There is also currently an open petition to the FDA to add sexual side effects to the Accutane/Isotretinoin patient information.

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Thank you so much. There are many of us who are of the same opinion that this travesty must be stopped at any cost.

I’m curious. You may not have filled out the template for the member story because it is geared towards males due to the history of this site, but do you also suffer from the emotional blunting/anhedonia, severe depression, or other neurological problems, as many of us do?

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It seems like the drug takes away what we love most… it’s like a deal with the devil :confused:

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I have similar issues with dry eyes, allergies and asthma after discontinuation. Have you had any improvement on asthma meds?

Hi everyone,

My apologies that it has taken me so long to reply - I have been dealing with a LOT medically.

I wanted to provide an update because I think it could be useful for folks.

Recently, I was diagnosed with secondary Postural Orthostatic Tachycardia Syndrome (POTS), caused by Mast Cell Activation Syndrome (MCAS). I had never heard of either of these conditions before being diagnosed, so it has taken me a few months to begin to wrap my head around what that all means. The more I learn about MCAS, the more I am blown away by how well it explains my symptoms, from my “allergies” and my headaches, my digestive problems and my urinary pain issues. I’m wondering if anyone else has MCAS (sometimes called MCAD or Mastocytosis)? I’ve read a couple articles that suggest that Accutane has been used purposely to activate mast cells for the purpose of wound healing. Since all my symptoms started after taking Accutane, I’m wondering if it’s possible that my mast cells activated from the medication. I will continue to investigate and report back. Wishing everyone a happy holidays.

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Hi Calcified - please read the reply I just posted below. I was recently diagnosed with MCAS/MCAD and have been started on an inhaler, antihistamines and mast cell stablizers. I am hoping for the best! What asthma meds do you take? I tried Singulair but didn’t tolerate it well.

What tests diagnosed you with POTS and Mast cell Activation Syndrome? What kind of Specialist?
I had a tilt table test myself for POTS at a university (it ended up feeling ridiculous) that was normal.

I’m very sorry for what happened to you. I also have pelvic pain, my docs are not sure weather is vulvodynia, vestibulodinia or some other thing like that. And I had to face a lot of complications in recognizing this thing as well, I relate to what you are saying :frowning: also I read that you had trouble singing and I think it can kinda be my case too, even tho I’m not super sure but I have pain in my throat too from singing sometimes, and weird feelings, not that I sing that much anymore. Did you do something to look into that? Like some exams or something?
Sending you love

Hi, I asked this as my breathing actually shows almost no improvement on inhalers. Everytime I get sick flu etc the asthma shows up, takes months to settle down.

I saw a heart guy once he said my hearts jumps 20 beats per minute when standing but put it down to deconditioning.

MCAS really does seem to fit.

I get the feeling we played with vitamin A and now equilibrium s gone.

A cardiologist tested me for POTS and an Allergist/Internist who specializes in MCAS diagnosed me with Mast Cell. What are you symptoms? A lot of doctors don’t know how to look for these things - the tests are far from perfect

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Hi Sara,
I’m so sorry to hear about your pelvic pain and vocal pain. I have seen a number of doctors for my voice, including a specialist who works with Grammy Foundation. She is the one who finally suggested maybe it was related to asthma. Do you cough?

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You could absolutely have POTS/MCAS. I don’t know where you’re located, but you should definitely see someone who specializes in each condition (MCAS is what causes the POTS). I’m happy to help you locate doctors. I seriously can’t bare to see people suffering like this, and doctors acting like we’re crazy!

Thanks. I do have elevated ige antibodies, and have been to an allergist myself testing positive for all known airborne allergens (ive known of allergies since I was young though). I also have tested positive twice for eosinophilic esophagitis. Was there any additional tests that lead to being diagnosed with MCAS?
I had the POTS test because I have had periods of dizziness, lightheadedness, head pressure, headaches.

Oof, I’m sorry, that sounds rough! You do sound like a good candidate for MCAS/POTS. The MCAS tests look for a rise in urinary n-methyl histamine, prostaglandin-D2 (or its metabolite 11β-prostaglandin), and tryptase. Be prepared though, you can test negative and still have MCAS! But it’s a good place to start.

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Thanks for your response, another thing I have found in myself is I can gain weight exceptionally fast. I realise this sounds common but its something I find more extreme in myself. Do you experience this as well?

Yea I do, particularly when I do specific things but I didn’t noticed it until last summer I think I’m not sure about it cause I don’t do that that often now, I will try to look into that better. Are you able to sing now?

Sorry for the delayed response. Naturally, I am very slim and have a very fast metabolism. However, at my worst, I was definitely at my heaviest. I was very bloated and swollen.

No, not able to sing yet. Still fighting asthma and MCAS, but I’ll let you know if anything helps :slight_smile:

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Thank you so much!
I’m staring in genuary pelvic floor therapy for the pelvic pain, not sure it can be all manged by this but I’ll report to you too if it’s helpful.
:heart: