Knifli introduction

Member Stories
#1

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?
Belgium

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?)

PSSD forum

What is your current age, height, weight?

20 y/o , 1m63 , 44kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?

Sertraline

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

50mg

What condition was being treated with the drug?

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

5 months

How old were you, and WHEN (date) did you start the drug?

18y/o

How old were you when you quit, and WHEN (date) did you quit?

19 y/o in July 2018
How did you quit (cold turkey or taper off)?

Taper off in 2 weeks
How long into your usage did you notice the onset of side effects?

Had pssd symptoms after my first pill, didn’t went away after i stopped the drug.
What side effects did you experience that have yet to resolve since discontinuation?

A bit less confusion and emotional blunting
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
[ x] 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
[X ] Emotional Blunting / Emotionally Flat
[ x] Difficulty Focusing / Concentrating
[ x] Confusion
[ x] Memory Loss / Forgetfulness
[ x] Stumbling over Words / Losing Train of Thought
[X ] Slurring of Speech
[ x] 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
[ x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[X ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ x] 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)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
SJW, bethanechol, CBD-oil, NAC, ritalin
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)?

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.

Had terrible side effects in the beginning of the treatment, i was shaking, sweating, had genital numbness, went back to my GP and she lowered my dose from 50mg to 25mg. Got back on 50mg after a few weeks and lost all my emotions and overal awareness. Stopped in July, my sexuality and emotions didn’t came back. Very scary if i look back on it since i am the last months a bit more consious about everything.

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#2

Welcome to the forum, @Knifli. Your symptom profile is very close to a lot of users here - including users hit by Propecia, SSRIs, Accutane.

Please fill out the survey if you haven’t already!

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Propeciahelp site news and feedback thread
#3

Done!

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#4

Great!

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#5

Bloodwork

21/01/2019 (19yo female at this time)
(All ovulatory)
TSH : 2,69 (range 0,51-4,30)
FSH : 12,5 (range : 4,7-21,5)
LH : 34,6 (range : 14,0-95,6)
Oestradiol : 89 (range 48-314)
Progesteron : 1,5 (range 0,1-12,0)
Prolactine : 16,4 (range 4,8-23,3)
Testosteron : 1,85
Testost.bind.globuline : 75,5
Free test : 0,019
DHEA sulfaat : 346,8 (range 65,1-368,0)

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#6

All seems in order to me

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#7

Yes it is :slight_smile:

Went to my GP yesterday… he thinks that i’m psychotic for linking my gut problems and dissociation problems with PSSD. I’m getting sick of this :confused:

#8

Have you tried to present any of the published scientific literature on PSSD to him?

This appears to be rather common problem that patients are pinned with the “mentally unstable” label for the sin of linking their illnesses to a prescription drug after discontinued use.

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#9

I did, but he only believes in the sexual sides. I don’t know what to do… luckely he’s not going to force me antipsychotics or whatever…

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#10

Hey, that’s pretty good that he will at least accept the sexual symptoms as SSRI-related, all things considered. There have been a couple PFS patients mention recently that they were shoved into mental institutions by their psychs or family members for believing in PFS. What a travesty.

I don’t have any good advice except to treat the other symptoms as a separate entity/etiology from the sertraline and go around his back to report them directly to whatever pharmacovigilance agency presides over Belgium.

It’s also good to see the PSSD community is becoming more accepting of anhedonia and physical symptoms as part of the syndrome.

#11

That’s what happened to me

#12

Oh damn, that’s awful.

Luckely my parents believe me :slight_smile:

I’m going to a dutch pdoc who believes and did research in PSSD soon. (Waldinger) Although i don’t think he can help me.

Thanks for the tips.

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#13

Results MRI Pelvis

Leuven, 11 October 2019.

RELEVANT CLINICAL INFORMATION:
Hypoesthesia genital region after taking sertraline

DIAGNOSTIC QUESTION:
Conflict sacral nerves?

RESEARCH:
MR pelvis

In addition to moderate bilateral facet arthrosis at level L5-S1, normal aspect of the scanned part of the lumbar spine.
No sacral abnormalities.
Normal spinal canal and emerging nerve roots. No radical conflicts or signs of neuritis have been demonstrated.
No added injuries.
No bone marrow.
No muscle edema.
No intra-abdominal abnormalities in the small pelvis visible.
No abnormalities in the coxofemoral joints.

DECISION
No explanation has been provided for the indicated complaint pattern.

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#14

Update.

It has been +5 years since i got PSSD.
I was 18-19 when i got it and i’m now 24.
It have been rough years.
My cognitive symptoms and anhedonia have gotten a lot better, although it was actually even hard to trust the improvements because i was so scared that it would never go back to normal. I didn’t even wanna see that things were going better because i couldn’t accept that i made the mistake of taking ssri’s. I wasted a lot of time obsessing over it which hindered my life even further than pssd on its own.
Man looking back it was REALLY hard. All people thinking i was going crazy and making things up in the period i was just out of highschool.
I haven’t been able to finish university because i was struggling too much. I’m still very ashamed that i fucked my life up this much but i’m trying to look forward again.

My pelvic floor is still very painful and i still suffer from genital numbness, so in that area i didn’t improve that much. My skin is also still quite numb. Which is still kinda scary. But i’m trying to accept it more. Already wasted too much time being mad about it.

Here was a little update. Idk if people still remember me lol.

Hope you guys are doing okay!

Knifli

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#15

We remember you!

I can only imagine how hard it is for the people here who are struggling with PSSD/PAS/PFS symptoms during their school/university years.

It’s unfortunate that PSSD and the other conditions are so poorly recognized because if it had been more accepted perhaps it would have been possible for you to request more time/chances for medical reasons.

I also dropped out of two university programs (although for reasons unrelated to PFS) before finding the right choice that worked for me. When I dropped out of uni I felt horrible, like I had failed myself and everyone around me, but it’s important to remember that you don’t have to be flawless and it’s entirely fair to say that you were distracted by circumstances. Ultimately I also graduated a little late, when I was 28 or something, but it’s really not the end of the world. I know it’s disappointing right now but I would encourage you to just try and take good care of yourself and try again.
If you managed to get into university in the first place that indicates you have intelligence and certain competencies, I’m sure you’ll manage to find a new study or some other career path that works for you.

Maybe if you pick up a new study you’ll be a bit more mentally prepared for it with your current experiences with PSSD. Perhaps you’ll be able to manage or prioritize things better the second time around and know yourself when you’re directing too much energy to all the things that surround this condition.

Don’t give up!

Edit: Re-reading your post I’m not sure I’ve entirely interpreted it correctly, I hope you’ll be able to finish your university with some more time. In any case feel free to send a message if you need someone to talk to.

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