Trying to make sense of things

Member Stories
#1

Where are you from (country)? Australia

How did you find this forum? Google search of my symptoms.

What is your current age, height, weight? 29, 173cm, 54kg

What specific drug did you use? Topical azelaic acid

What dose did you take? I don’t know. I applied the cream twice a day.

What condition was being treated with the drug? Acne

For how long did you take the drug (weeks/months/years)? Two weeks

Date when you started the drug? 2020

Date when you quit the drug? 2020

Age when you quit? 26

How did you quit (cold turkey or taper off)? Cold turkey

How long into your usage did you notice the onset of side effects? A week

What side effects did you experience that have yet to resolve since discontinuation?

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
[ x Erectile Dysfunction
[ ] Complete Impotence
[ x Loss of Morning Erections
[ x Loss of Spontaneous Erections
[ x Loss of Nocturnal Erections
[ x Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

Physical
[x ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ x Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] 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
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Various vitamins and supplements.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)? Low testosterone, high estrogen, low vitamin d

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

I believe I have PFS, although my circumstances are very muddy and complicated. I’ve experienced very varied symptoms over the last three years, and some of it is owing to problems I experienced from antibiotic use in 2020. The problems that are consistent with PFS started close to when I briefly used topical azelaic acid - a dht inhibitor. To this day I have low libido, poor erections, shrinkage and pelvic pain. However, it’s so complicated. I don’t know how to make sense of it. Let me give you an example. I have chronic fatigue syndrome, and when that is flaring up and my energy is extremely poor, these PFS symptoms are subdued - my erections are stronger, my pelvic pain is gone, and there’s no shrinkage, there’s no emotional numbness. Conversely, when my fatigue is not bad, the PFS symptoms are terrible. For instance, taking vitamin b2 or zinc or quercetin all help me tremendously with energy , but I cannot bear how much they make the rest of my symptoms worse. Why is it as though I’m in a see saw? Why do I read a lot of anecdotes of people feeling bad across the board whereas with me it’s always as though when I’m at my most functional the sexual symptoms are at their worst?

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#2

You’re not the only person to report that dealing with one set of symptoms makes another better or worse.

It’s been talked about a number of times about how when someone catches a common cold they can end up feeling better with regard to their pfs symptoms.

We have had plenty of theorising on why that is, but no definite answers.

Of greatest concern in my opinion is that we have a long, long, history of people identifying a substance or food that makes them feel better (zinc has been mentioned many times) but that has in some cases triggered another crash and a worsening of symptoms. I can think of one person (no longer posting) who blamed quercetin for a dramatic downturn in their condition.

I can’t say what will happen if you continue experimenting with those substances, but I personally took the decision to steer clear of things that have caused other people problems in the past.

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#3

I can attest to the fact that every time I get sick my symptoms improve, especially the sexual symptoms.

For me, anything that seems to help my chronic fatigue syndrome - probiotics, prebiotics, quercetin, acetyl carnitine, zinc, naltrexone - dramatically worsen my other symptoms (chiefly the sexual symptoms, pelvic pain and emotional numbness). There is always a trade off. Horrible way to live,

#4

Sorry to hear that @Itsjordan,

Would strongly suggest looking into the effects Quercetin has had on at least one person here who attributed severe symptoms to it.

I know you’re aware of the connection already, so apologies to hammer it home.

#5

You must be refering to another person since I still post here but I’m also a quercetin crasher, I haven’t had it lately but I tried it months back at 500 mg and it was like it dhut my brain off and it tooki a good month before I even started getting back what little progress I had at the time.

Like the person above said anything that helps for CFS helps this but interesting thing is carnitine, quercetin, and zinc make me feel terrible. I’ve added magnesium citrate and had a weird start up reaction but am now doing better on that than with malate. Actually got on this because people said it helped them tolerate D3 supplementation when they would get fatigue and brain fog from it. I may try it again but not right now. I’ve also been drinking more tea lately and really maxing out my antioxidants that way (green tea for the EGCG content and cistus).

#6

Im surprised to hear about the EGCG. Ive always steered clear of it as it decreases DHT.

#7

I noticed weaker erections with it but nothing more, made me a bit overall calmer but I’m pretty sure it was just knocking down inflammation artificially kicking my body into overdrive with no real hormonal energy behind it. Just crawling out of a horrible reaction to D3 that managed to turn more back on in my brain in the correct ways but I can’t handle supplementing it so I’m trying D2 tomorrow at 1000 iu. I’ll update everyone o how that goes. Like usual expecting the worst, praying for the best, and being satisfied with an average improvement in things consistently.