NOSEXscitalopram: Withdrawal and PSSD - my story

[NoSexscitalopram]

 

NOSEXscitalopram

I am a 23 years old male and I was prescribed antidepressants 2 years ago, which permanently damaged my sexuality.

It was Spring 2017, after a stressful period of time caused by anemia, I began experiencing symptoms of generalized anxiety disorder. I started having depersonalization, a state in which a person feels "detached" from their mind, thoughts, and emotions. I tried psychotherapy for 2 months, but it was not beneficial for me at all, therefore my next decision was to make an appointment with a private psychiatrist.

He prescribed me an antidepressant called ‘Escitalopram’ (also known under the brand names of Cipralex and Lexapro) and said that these medications were well tolerated and the ‘only side effects’ that most of his patients experienced was a dry mouth. A couple of days after starting the antidepressant, my genitals became numb and my sexual functioning decreased by around 50%. I literally felt like I was 90 years old!

During my second appointment, I reported this side effect to the psychiatrist, and he reacted by prescribing a different antidepressant. Unfortunately, it was causing the same problem. We then tried a third one which caused more sexual side effects. I kept taking it for about 3 weeks and decided to quit as I had had enough.

My psychiatrist informed me, that I might get withdrawal symptoms which are mild and last around a week. When I discontinued the medications, I went through hell! I experienced horrible brain zaps, anxiety, sadness, shaking, insomnia, sweating, and severe problems with concentration - it all lasted about 7 weeks. 

Additionally, the sexual side effects still persisted at that time - I thought that it could not be possible, so I visited my GP. I had all sorts of medical tests that revealed no abnormalities. Furthermore, I got back to my psychiatrist with the issue, who said that in some cases antidepressants cause permanent sexual dysfunctions. I was terrified. Then I got referred to a urologist, who confirmed that my problem was caused by the antidepressant and unfortunately there was no treatment for it.

I am now stuck with permanent damage from these medications and there is no help for me and many sufferers at all. This issue was first reported to regulators in 1991 and the first time any regulator actually confirmed the problem and requested updates of all SSRI/SNRI leaflets was the European Medication Agency in May 2019. Still, there is no research into it and many GPs say that PSSD does not exist.

How horrible life can be when you have a condition, which existence is denied by pharmaceutical companies and even medical professionals. I am in an anhedonia state, which negatively affected my progress at university, and destroyed my relationship. I do not think that I will ever be able to have my own family that I have always dreamt of.

Antidepressants permanently damaged my sexuality and left me suicidal. But of course, these medications are still recognized as safe and there are more and more people who are prescribed and take them worldwide.

Edited May 13, 2020 by Gridley

[Gridley]

Welcome to SA, NOSEXscitalopram.

 

Unfortunately, doctors are unaware of the damage these drugs.  We have found that eventually everyone recovers from withdrawal, even from PSSD, though it can take a very long and frustrating time.  I hope these links will offer some encouragement. 

PSSD: Success story for PSSD and ongoing discontinuation ...

branyan PSSD success/challenges - Success stories ...

Djderek I had pssd! - Success stories: Recovery from ...

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium (glycinate is a good form) and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems.

 

This is your Introduction topic, where you can ask questions and connect with other members.  We're glad you found your way here.

 

 

Edited May 13, 2020 by Gridley

[NoSexscitalopram]

Hi, 

 

I understand your positive intention, but you cannot claim that everyone recovers from PSSD - it's actually misleading what you wrote. It is not wise to draw conclusions on such a serious matter just after seeing a few recovery stories here. There are hundreds of PSSD sufferers on other sites, such as propeciahelp.com, who have seen very little improvements over years. Same has been seen by Prof. Healy and other professionals.  

 

I am sorry, but it frustrates me what you said about PSSD. 

[1Day]

17 hours ago, NOSEXscitalopram said:

Hi, 

 

I understand your positive intention, but you cannot claim that everyone recovers from PSSD - it's actually misleading what you wrote. It is not wise to draw conclusions on such a serious matter just after seeing a few recovery stories here. There are hundreds of PSSD sufferers on other sites, such as propeciahelp.com, who have seen very little improvements over years. Same has been seen by Prof. Healy and other professionals.  

 

I am sorry, but it frustrates me what you said about PSSD. 

 

I am very sorry for your situation, however at just 2 years off you cannot possibly say that these drugs permanently damaged your sexuality.

 

 

I have never looked on propeciahelp.com before, but last night I had a read and found a story of somebody who recovered from drug induced sexual dysfunction after 15 years; the previous longest recovery time I knew of was 12 years.  If it can take 15 years to recover, then nobody at 2/5/8/12 years off can make the assumption that it is permanent.  It can take a VERY LONG time, but people don't seem to be able to accept this. 

 

 

You also have to apply some logic to this situation.  If it was often permanent, where are all the thousands of people who came off the drugs in the late 80's and early 90's with PSSD?  Yes, many of them would not speak online about it now, but even if only a small percentage did (which you would expect if somebody had lived with this for 30 years), it would still amount to a considerable number; I have only heard of a handful of people who are 20+ years out.  You also have to take into account that many of these longer terms cases are taking and experimenting with various drugs/supplements in an attempt to reverse PSSD - nobody knows the effects of this in terms of healing processes, but for sure some have admitted to making their situation even worse.  

 

 

Whilst Dr Healy does know of very long term cases, his view has also changed in that he knows it can and does reverse.  I know for a fact that he has told certain individuals he expects them to eventually recover. 

 

 

A 'long-time' and 'permanent' are not the same thing.

 

 

I hope things start to change for you sooner rather than later.

 

 

[NoSexscitalopram]

Thanks for your kind words.

 

Current studies have shown permanent damage in young PSSD sufferers' penises, just like after having priapism or long period of diabetes - https://www.auajournals.org/doi/abs/10.1097/JU.0000000000000964.015

 

The same has been observed in patients with Post Finasteride Syndrome - https://www.pfsfoundation.org/news/penile-vascular-abnormalities-found-in-majority-of-pfs-patients-in-baylor-college-of-medicine-study/

 

Someone who has a milder version of PSSD, without tissue changes in their genitals, may see improvements over time. Others simply don't.

 

That's why Healy says that in some people, full recovery may happen as they do experience brief windows of improvement, but it doesn't apply to everyone. 

 

 

 

Guys, please to stop disregarding scientific studies, because you have read a story somewhere on your forum. It's like promising to everyone that they will be cured of cancer or that everyone will recover from Covid19. Medicine and human body are too complex to draw such conclusions as you both did. Everyone is different. 

 

 

Regarding sufferers from 90's - doctors' current awareness about PSSD has not changed much since the 90s, therefore most people with PSSD appear to be diagnosed with a mental illness, rather than the actual iatrogenic harm. 

 

 

[Variance]

I'm in the same boat as you mate, but your attitude and mindset aren't going to get you too far, on this forum or in real life.

 

It might well feel permanent to you now, it certainly does to me, but it's also impossible to make that claim after 2 years - which unfortunately seems like quite a short timescale in the context of PSSD. There are plenty of cases of people who thought they'd never recover, who end up recovering.

 

It's the hardest thing in the world to do, but just accepting that this is the situation for now is all we can do - whether or not we recover in the next couple of years, we may as well find peace in the moment.

[jozeff]

I'm so sorry for you man,

 

I fully understand your situation. I've bee having a lot of sexual dysfunction due to effexor and later on citalopram. Just no sexual desire whatsoever.

After weaning off the meds my sexual functionality came back slowly. In the meantime I was years older so it never returned to the level when I was 16 but that was ok for me.

 

You are still very young and there is quite a good chance that your sexual functionality will return.

 

This is based on a dozen of people I know in my family and work who have recovered from this problem

There will probably also be people who have never recovered from this and post their story online.

 

Two years is quite a long time but in ssri land this is not extreme. I've been having major issues since 2017 and don't see much improvement but we have to keep hope based on other peoples stories.

 

I know it feels terrible and unfair. You have to keep up your spirit and try not to focus on your symptoms. This will not help and might make it even worse.... I suffer the most when I think about how much I have to suffer.

 

 

Cheers jozeff

[Shar244]

On 5/21/2020 at 5:00 PM, Variance said:

I'm in the same boat as you mate, but your attitude and mindset aren't going to get you too far, on this forum or in real life.

 

It might well feel permanent to you now, it certainly does to me, but it's also impossible to make that claim after 2 years - which unfortunately seems like quite a short timescale in the context of PSSD. There are plenty of cases of people who thought they'd never recover, who end up recovering.

 

It's the hardest thing in the world to do, but just accepting that this is the situation for now is all we can do - whether or not we recover in the next couple of years, we may as well find peace in the moment.

Great advice. I’m 3.5 years out and was starting to give up hope - as I have so many times, then the last week or so I’ve randomly had a period of feeling around 80% ‘normal’ which has happened maybe 4 times since I took my last antidepressant 

 

Most of the recovery stories state they thought they would be one of those people that never recover, thats exactly how we will all feel until it happens to us. All we have is hope and it’s a great thing to have! 
 

Please stay strong. I hope you have some great people around you that you can talk to. If not, we’re all in the same boat here 

 

Shar  

 

[Breathdeep]

This message is a response to Gridley. I have a feeling allot of ppl recover in the end but that's just my gut instinct. I'm 4 month off antidepressants and sometimes I feel hopefully, sometimes not. Can you explain why you think everyone recovers in the end. On Reddit you hardly hear recover stories. How come you've heard so many? Thanks!