Sopgirl introduction- PSSD from sertraline

Member Stories
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#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)?

UK

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?

38, 1.55m, 63kg

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/day for 1 year then 100mg/day for 6 months

What condition was being treated with the drug?

PMS

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

1.5 years in total

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

Started oct 2013 aged32

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

Finished mar 2015 aged 35

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

taper

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

1 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
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ x] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[x ] Emotional Blunting / Emotionally Flat
[x ] 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
[ ] 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
[ ] 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

[x ] Other (please explain)

Loss of nipple sensitivity
Anhedonic orgasm
Lubrication issues

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

Bupropion
Tadalafil

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)?

I’ve had a test post-drug and all hormones were normal.

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.

Within days of taking the drug I experienced total anorgasmia, loss of libido, loss of genital and nipple sensation. On cessation, ability to experience orgasm returned, but unfortunately it was pleasureless. In the last 4 years I have recovered maybe 15% of libido, pleasure and sensation.

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Propeciahelp site news and feedback thread
#2

Dear Sopgirl,

welcome to the forum. I am sorry this happened to you, but here you find a community of fellow sufferers who are determined to investigate the mechanism driving this condition.

There are several ways you can help us do that:

• Report your side effects to the authorities. See here for more Information on how to report your side effects: https://www.pfsfoundation.org/report-side-effects/ 3

• Complete the survey. For the first time ever, we will systematically generate data with regard to the numerous side effects of this condition and their Impact on quality of life. It will likely also show the unsurprising similarity in symptoms between PFS, PSSD, PAS etc. that have so far been considered as separate conditions, but are likely based in similar if not identical mechanisms. The survey will hopefully create awareness and leads for publications and research. And it only costs abount an hour of everyone’s time to complete it. See here for more details: Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate

• Provide 23andme data. This is a DNA test. We hope to compile as many samples as possible of DNA from PFS, PSSD, PAS etc. patients. This may generate leads with regard to our genetic predisposition that makes us suspectible to suffer from persistent side effects after the use of these meds. This would be of high scientific interest. It costs only about a 100 bucks to order the test. See here for more Information: Important Announcement: Two Community-Led Research Projects - Please Participate

Thank you and good luck! If you have any questions, let us know!

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#3

Thankyou, Northern Star.

I have reported the effects on the Yellow Card scheme in the UK. (It’s very annoying as the data lumps sexual side effects with current use in with side effects after discontinuation.

I will fill in the survey but it appears to be down at the moment.

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#4

Hi sopgirl,

good that you reported your sides no matter the apparent imperfection of the process in the UK.

For the survey, please use the “bar chart” button in the upper right menu (inbetween the globe button and the magnifying glas button). If this does not work, please let us know!

Thank you

1 Like
#5

Are you aware that the EMA and NHS are currently in the process of making a determination about how to handle PSSD?

Hopefully, they will establish a new post-drug category for ADRs to accomodate PFS and PSSD.

#6

Could you link to something that shows governments’ awareness of PSSD or PFS?

1 Like
#7

Thanks for being brave and joining our primarily male community, Sopgirl. It is very important that the science and medical world recognizes that our syndrome is not male specific, but rather can affect both sexes. Hopefully more women will join us in the future and help us establish this fact. The bigger and more visible we can make this problem, the more interest it will eventually attract. I hope you will find the discussions here helpful, and join in where inclined.

At some point you will be getting an invitation for our community survey. As we currently have very low female participation, please support this survey by filling it out. We will sharing summary data with scientists at some point, and publish overviews on this site.

All the best

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#8

See item 4.2.1 of the following EMA pharmacovigilance risk assessment committee agenda:

.

.

Pharmacovigilance Risk Assessment Committee (PRAC) EMA/PRAC/ 596678 /2018 Page 16 / 87 4.2.

New signals detected from other sources

4.2.1.

Clomipramine (NAP) ; Serotonin and noradrenaline reuptake inhibitors (SNRI) 3 : desvenlafaxine
(NAP); duloxetine - ARICLAIM (CAP), CYMBALTA (CAP) , DULOXETINE LILLY (CAP), DULOXETINE
MYLAN (CAP), DULOXETINE ZENTIVA (CAP), XERISTAR (CAP), YENTREVE (CAP); milnacipran
(NAP); venlafaxine (NAP) Sel ective serotonin reuptake inhibitors (SSRI) 4 : c italopram (NAP);
escitalopram (NAP) ; fluoxetine (NAP) ; fluvoxamine (NAP) ; paroxetine (NAP) ; sertraline (NAP)
Vortioxetine – BRINTELLIX (CAP)

Applicant(s): Eli Lilly Nederland B.V. (Ariclaim, Cymbalta, Duloxetine Lilly, Xeristar, Yentreve), Generics UK Limited (Duloxetine Mylan), H. Lundbeck A/S (Brintellix), Zentiva k.s. (Duloxetine Zentiva), various

PRAC Rapporteur: To be appointed

Scope: Signal of persistent sexual dysfunction after drug withdrawal

Action: For adoption of PRAC recommendation

EPITT 19277 – New signal

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#9

Dubya- thanks for the information. I’m delighted that official bodies are finally recognising PSSD. It is crucial that a new ADR category is made for ongoing sexual symptoms; I’m sick of medics rabbiting on about sexual side effects of current drug use. I’ve been off the wretched stuff for years!

Awor- Thank you for welcoming me to this forum- I have now filled in the community survey as I am pretty determined to raise the issue of this as a female problem too. Since my problems began I have spoken to many health professionals. Most had never heard of PSSD and the ones that had heard of it dismissed it as ‘not being proven’. They had also never heard of it in women.

It’s interesting that you note the male-dominated nature of this forum. I have found that sadly, the world of sexual dysfunction is a male one. Despite the fact that huge numbers of women meet the criteria for a sexual dysfunction disorder, medics’ thoughts tend to be a combination of the following : it’s so common it’s normal, there are few effective treatments and it’s all psychological anyway.

The one thing that I found really interesting when dipping my toe into these male-dominated forums is the huge array of sexual symptoms the males report: different variants of erectile dysfunction, monitoring variables regarding semen and morning erections, to name but a few. With women, we barely have the words to describe our symptoms beyond low libido and not getting aroused. I remember talking to a doctor who was having trouble understanding my physical problems so I said, “If I were a man I’d say I was ‘impotent’. Do we use that word for women?”

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#10

Sopgirl, did Bupropion have any positive effect on your condition?

#11

I think the bupropion has done something.

I decided to take it as an antidepressant as I have fairly severe anhedonia. (I wouldn’t say I’m actually depressed, just numb and emotionally flat.) I was also aware of its use as an add-on drug for those with current sexual symptoms with SSRI use, but was not expecting any improvement in my ongoing symptoms.

It has not worked on my general anhedonia. However, sexually I have noticed that orgasms have become more intense. It is bizarre as I would still not say they are pleasurable, yet I do have some sense of a build up and relief when it’s over. I sense something is going on with the dopamine making it rewarding, but where is the pleasure? Is it masked by anhedonia?

I do have a substantial problem with numbness and I don’t get any increase in sensation when aroused. I would say this is the worst symptom for me and wonder if sensation were restored whether enjoyment would return.

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#12

Thanks for completing the survey!

Hopefully you feel welcome here despite the large proportion of male members.

You mentioned having trouble explaining some of the sexual side effects as the female equivalent of impotence. There is a medical term for lack of proper clitoral and vaginal engorgement in response to sexual stimulus, but I’m at a loss to remember what it is.

One thing is for certain, I spoke in detail with another PAS patient who was female and it was striking how similar our experiences in that regard were. She just laughed at the fact it was such a “clinical” conversation, like we were talking about sharing intimate details about indigestion.

#13

Me too.

Thanks, it’s interesting to hear how it has impacted your sexual experience and I guess it just shows how complicated the sexual response is, and how we can experience an improvement in one aspect, such as intensity of orgasm, but still not experience pleasure.

I suspect that general anhedonia, and numbness as I too suffer from blunts any positive affect. If one can’t feel pleasure if they were to win the lottery, why should one feel pleasure with orgasm?

If one cannot experience enjoyment with ANYTHING, it would be unreasonable to expect them to experience enjoyment from sex… tragic.

Personally I would say my worst issue is the anhedonia. If one can’t feel, one cannot experience. If one cannot experience one cannot remember. If one cannot remember, how does one know where they sit?

Long story short, if there was one symptom I personally would like to address above all others, it would be that emotional flatness.

#14

Dubya- Describing my sexual response is no longer an awkward topic for me as I’ve had to repeat myself so many times! The embarrassment is usually on the part of the medic who really isn’t interested in all the physiological details or cannot understand what a woman who is capable of orgasms can possibly have to complain about.

If women realised that their sexual response is physiologically very similar to the male response (rather than it constantly being pointed out how we differ), they’d perhaps realise they could suffer from ‘impotence’, could tell their doctor and maybe try Viagra or Cialis.

Male PSSD sufferers have joined forces with the PFS sufferers and this perhaps suggests a common pathogenesis or cure. Similarly, it is essential that female PSSD sufferers come forward as this could give further hints about what is going on. There are also so few women complaining of PSSD it risks being defined as a male problem. Whenever I see a medicine listed as causing erection problems in men I immediately think, “Has anyone bothered checking what it does to women?”

Orthogs- I take your point about anhedonia. I think I’m at the stage where not enjoying stuff like music, food, company, etc. is my new normal. My flat affect renders me almost indifferent to my anhedonia. I find the sexual thing so odd though. It is almost as if without the correct sensation, the orgasm doesn’t ‘mean’ anything; it lacks context.

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#15

Brilliantly put.

#16

Thanks for your contributions, Sopgirl! It is interesting to see the female perspective and how our symptoms are so similar.

This forum was originally founded for people who used Propecia/Finasteride (hence the name) to treat male pattern baldness. That’s largely why it is so male dominated. But as has been pointed out, it is getting increasingly obvious that the problem goes way beyond Finasteride and includes drugs that are used by both/all sexes.

As Awor has pointed out, it is vital that we demonstrate to the public as well as the science and medical community just how big this problem is. That is why we are determined to bring all the different patient communities together for common projects. As seperated PFS, PSSD, PAS etc. communities we are just too small. But together we have more leverage.

If you know any other females (but also males) suffering from “PSSD”, please invite them to this forum and ask them to fill out the survey. Given the variety in symptoms and their severity, given the variety in drugs responsible for them and considering different sexes, we really need a large and diverse sample of affected people to perform meaningful analysis.

Thank you!

2 Likes
#17

So what do we do now?

#18

What i cannot understand is how it is possible that a lot us people here have been trying different ways to get to their pre-finas status, visiting lots of doctors…different specilities…checking all the body…spending lots of money and resources…and nobody gets a clue about how to do it. We are so many people that if this condition was reversible at least a few of people could do it 100% applying the vrry same protocol, and with an explanation. This is really insane and freaking me out. I do not think this is 100% reversible at this point.

#19

Yeah, heard that one before. That is, if you are capable of any sexual function whatsoever, then there’s nothing wrong with you. Easily spoken by someone who has never dealt with this themselves.

Also, have seen mixed evidence of the use of PDE5is in women. Some studies it works, some, it doesn’t. Should be able to try it off-label if you could convince a doctor. Addyi is total garbage and not even “viagra-like”, according to anecdotal reports of women taking it.

#20

Hi! I’m glad to see another female :slight_smile:

I never really had struggles with doctors believing me in regards to my sexual dysfunction. Maybe because i’m only 20 years old and got into this shit when i was 18. I have found that muira puama helped me a bit for genital sensitivity and being able to feel aroused, also cholinergic drugs helped for being able to orgasm, however i haven’t tried a cholinergic drug that crosses BBB and my orgasms were only in my body and not in my mind, if that makes sense?.. For so far the things that helped me a bit for my sexual function :slight_smile:

Right now i’m more concerned about my other symptoms because i just can’t function anymore due dissociation and some other mental/cognitive problems.

Feel free to PM me :slight_smile: i would like to discuss the female side of this problem with another female :slight_smile:

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