Ghostpssd Intro - Looking for a solution to permanent sexual dysfunction from SSRI treatment (PSSD)

in ssri •  3 years ago  (edited)

Hi, I'm Ghost

I'm a 20 year old neuroscience and biology major who took Lexapro 5mg for 4 days almost 2 years ago. Ever since then, my sexuality has been altered profoundly. I never had any of these side-effects before September 2014, am in great shape, eat well, exercise daily, and now have my anxiety under control without SSRIs (I was prescribed them for anxiety). Many people would call this crazy, and a few years ago I would have agreed with them. However, I have realized the past 22 months that this is indeed a reality for thousands of people coming off of SSRI medications.

SSRIs are some of the most common pharmaceuticals in the world. They are used heavily for the treatment of Anxiety, OCD, and Depression. For some people, they work great! But their dark side is not known to society at large. There is a big community of patients who never regain sexual function after they take an SSRI.

Many side effects are known during treatment, but in PSSD they continue after the medication has stopped. Side effects often include:

Numbing of genitals
Erectile dysfunction
Decreased sex drive
Numbing of emotions (anhedonia)
Increased Depression
Increased Anxiety
Brain Fog
Issues with temperature regulation
Loss of motivation
Tinnitus
Weakened immune system
Memory decrease
Mood swings
and others that vary by patient.

Several communities exist. Most notably:
https://www.reddit.com/r/PSSD/
http://www.pssdforum.com/
http://survivingantidepressants.org/
https://beta.groups.yahoo.com/neo/groups/SSRIsex/info (3800 members)

I have my theories for what is wrong (which I will post here on Steemit), but I'm reaching a limit of what I can know without doing my own research. I've worked in multiple scientific labs, and want to use that experience to one day cure this horrible condition that has claimed the lives of people that I cared about a lot. I plan to attend medical school in the next 2-3 years (currently still undergrad). I think that the steemit community is a perfect one for me to continue my fight to bring PSSD to attention after pharmaceutical companies and conventional medicine have fought to keep it hidden.

Still don’t believe me? Here are a few (of many) peer-reviewed papers on the topic:

  1. Persistent Sexual Side Effects after SSRI Discontinuation, Antonei B. Csoka, Stuart Shipko, 2006
    http://www.ncbi.nlm.nih.gov/pubmed/16636635
    http://www.karger.com/Article/FullText/91777
  2. Genital anaesthesia persisting six years after sertraline discontinuation, Bolton JM, Sareen J, Reiss JP, 2006
    http://www.ncbi.nlm.nih.gov/pubmed/16709553
  3. Post SSRI Sexual Dysfunction, Audrey Bahrick, 2006
    https://www.researchgate.net/publication/236587031_Post_SSRI_Sexual_Dysfunction
  4. Prolonged Post-Treatment Genital Anesthesia and Sexual Dysfunction Following Discontinuation of Citalopram and the Atypical Antidepressant Nefazodone, Robert P. Kauffman, Amanda Murdock, 2007
    http://benthamopen.com/towhj/articles/V001/1TOWHJ.pdf
  5. Persistent Sexual Dysfunction after Discontinuation of Selective Serotonin Reuptake Inhibitors, Antonei Csoka, Audrey Bahrick, Olli-Pekka Mehtonen, 2008
    http://www.ncbi.nlm.nih.gov/pubmed/18173768
  6. Persistence of Sexual Dysfunction Side Effects after Discontinuation of Antidepressant Medications: Emerging Evidence, Audrey S. Bahrick, 2008
    https://www.researchgate.net/publication/228667893_Persistence_of_Sexual_Dysfunction_Side_Effects_after_Discontinuation_of_Antidepressant_Medications_Emerging_Evidence
  7. Persistent Genital Arousal Disorder in Women: Case Reports of Association with Anti-Depressant Usage and Withdrawal, Sandra R. Leibluma & David Goldmeierb, 2008
    http://www.ncbi.nlm.nih.gov/pubmed/18224549
  8. Persistent sexual dysfunction in genitourinary medicine clinic attendees induced by selective serotonin reuptake inhibitors, Farnsworth KD, Dinsmore WW, 2009
    http://www.ncbi.nlm.nih.gov/pubmed/19103903
  9. The impact of persistent sexual side effects of selective serotonin reuptake inhibitors after discontinuing treatment: a qualitative study, Rebecca Diane Stinson, 2013
    http://ir.uiowa.edu/cgi/viewcontent.cgi?article=5061&context=etd
  10. Does sexual dysfunction persist upon discontinuation of selective serotonin reuptake inhibitors?, G.C. Ekhart, E.P. van Puijenbroek, 2014
    http://www.ncbi.nlm.nih.gov/pubmed/24838589
  11. One hundred and twenty cases of enduring sexual dysfunction following treatment, Hogan C, Le Noury J, Healy D, Mangin D, 2014
    http://www.ncbi.nlm.nih.gov/pubmed/24902508
  12. Penile anesthesia in post SSRI sexual dysfunction (PSSD) responds to low-power laser irradiation: A case study and hypothesis about the role of transient receptor potential (TRP) ion channels, Waldinger MD, van Coevorden RS, Schweitzer DH, Georgiadis J, 2014
    http://www.ncbi.nlm.nih.gov/pubmed/25483212
  13. Post-SSRI Sexual Dysfunction: Clinical Characterization and Preliminary Assessment of Contributory Factors and Dose-Response Relationship. Ben-Sheetrit J, Aizenberg D, Csoka AB, Weizman A, Hermesh H., 2015
    http://www.ncbi.nlm.nih.gov/pubmed/25815755
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Hadn't heard about this before. Best of luck to you with this.

Weird. That is incredibly unusual or so I thought. I will need to do some reading on this. It is very common to have sexual side effects when you are on SSRIs but as you will know for most people they stop as soon as the drug is stopped. Thanks for the list of literature. I will see if I can find out more about this.

It is very weird. I would say that in my experience dealing with people with PSSD that they tend to be 16-24 years of age when taking the drug (although that may be due to who is going online to talk about their struggles). I run www.pssdforum.com and moderate the www/reddit.com/r/PSSD subreddit, and those collectively have few hundred members. The older yahoo page used to have a few thousand, and this doesn't include the many many people who message me on Reddit telling me that they are noticing this too.

So even if 10,000 people (a high estimate) had it in america (where I live), that may only be 1% of all the SSRI users. So overall it is pretty unusual for it to stick.

Yes but it might not be the SSRI itself or on its own (as you will know with your education) there could be a number of factors that interact with the drug itself, could be a particular genotype or phenotype that is susceptible.

Microbiome is also an important factor these days (would come into phenotype).

I'm also aware that there have been bad batches of pharmaceutical drugs - not just tampering but contamination is a potential issue whilst rare it does happen. There were cases of eosinophilia myalgia syndrome from tainted pharmacy batches of L-tryptophan in the 80s which were traced to a Japanese lab.

I'm curious you mentioned you have your own theory - would be interested to know what you think given your clinical knowledge and your discussion with others who have experienced it as well as yourself.

Do you have a good psychiatrist or other physician (e.g. urologist) who you are seeing about his and could do some digging on your behalf - maybe even do a paper on your case? The important thing with these rare reactions is that they have to reach the awareness of the medical community before anything will be done.

It was similar with the association between SSRIs and suicide.

At first people thought it was just the normal improvement in mood that was causing it - it was only after very carefully looking at the evidence that it seemed there was a genuine problem related to the drugs themselves.

Yea, I recognize that there are plenty of factors that could come into play.

In all honesty, there are some people who come to my site, and probably are just really mentally ill: and it's not from the medicine. A lot of them get really angry about me admitting that. But, I think that admitting that there are many factors is the first step in putting forward a convincing case of why the others cannot be true. Not everyone who hops on the internet and claims a drug damaged them is sharing the medical truth.

That said, I have found many people where just about no other explanation can be given. I guess that doses could be contaminated as you mentioned, but I think that PSSD is just the brain getting stuck in the SSRI state. This isn't always a bad thing, and people who have depression permanently cured from an SSRI can tell you this first hand. SSRIs are incredible drugs.

I don't have a doctor that I'm currently seeing that I've opened up to it about. I've told doctors, and heard of doctors believing in it, or hearing of it, but no MD that I currently see is aware of it. My eventual goal is to become a doctor and do it myself. I have the drive and knowledge to do so, and it's more a matter of timing/funding that will influence when it will happen.

I never took the SSRI Prozac, but I've heard that on page 15 (or so) of the warning sheet they state the sexual dysfunction may persist after treatment.

I really appreciate how open to this theory you are. It's hard to get people to listen sometimes.

I posted the first paper that I've had done for a while here. I'll keep adding them as I write/ finish them. A few have been in the works for a while.

cheers

It is most definately real and it is torture. It is obviously poorly reported by broken victims and a vast chronic dustbin creating industry that routinely uses terms like non-compliance or treatment-resistant if anybody thinks the drugs aren't anything but curing them. People just dissapear. the real numbers would be scary, + no solutions + older victims + no reporting by docs + something people cant talk about + invented other cover-diagnosis

not many people are exactly monitered that aren't on medication anymore "treatment-resistant" neither are the ones that are