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Altostrata

PSSD Post-SSRI sexual dysfunction

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Spruce30

When you say a few years Altostrata, I was wondering if you could be a bit more specific?

 

I think I read on a Rxisk article comment that you said for the ghost orgasms and the genital anaesthesia to fully recover it took about 7-9 years? Is this about the time frame it took for you to feel completely recovered ?

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potions

Hey Spruce, I tried to send you a PM but it said you couldn’t receive messages. I wanted to ask how you were doing recently and if you’ve seen any improvements/windows

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Spruce30

Weird. I don't know why it said I cant receive messages. I have been having some improvements yes. It feels like my genital anaesthesia is slowly improving

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potions

I recently found a 2010 story about a woman who discontinued Prozac in 1995 and had “90% genital anesthesia and pleasureless orgasm” ever since. But in the story, she talked about recent imrpovements she had, which she chalked up to her recent experiment with melatonin. (Ps melatonin I feel she either no effect on my pssd or makes it worse. I feel as though her improvements were natural and unrelated to the melatonin.) Point is, after over 15 years of numbness she started to improve. Perhaps even the long term sufferers might eventually heal

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Altostrata
18 hours ago, Spruce30 said:

When you say a few years Altostrata, I was wondering if you could be a bit more specific?

 

I think I read on a Rxisk article comment that you said for the ghost orgasms and the genital anaesthesia to fully recover it took about 7-9 years? Is this about the time frame it took for you to feel completely recovered ?

 

It took a few years for sensation to return. There was very gradual continual improvement after that, which is what you would expect from neuroplasticity.

 

Not knowing the Rxisk comment to which you refer, I cannot explain further. It may not even have been my comment.

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Spruce30

I found the page I was talking about. Your comment is the 6th one down. https://rxisk.org/recovering-from-pssd/

 

In the comment you mention it took 9 years for you to feel fully recovered from PSSD.

 

I was wondering Altostrata if you also suffered from a non existent libido? And if so, how long you felt it took you to recover your libido? The non existent libido is the worst aspect of my PSSD for me. I have seen recent improvement in my genital anaesthesia and mild improvement on and off in the almost pleasure less orgasms, but almost no improvement in my libido. It is this aspect of my PSSD that distresses me the most.

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Altostrata

As that was 4 years ago, please forgive me if I didn't remember it.

 

This was my PSSD status in 2014: https://rxisk.org/recovering-from-pssd/#comment-2491

Quote

 

I myself have recovered from PSSD. After coming off Paxil in October 2004, among other withdrawal symptoms I had the absolute genital anesthesia, which lasted for perhaps a year. Very slowly, genital sensation came back.

 

Then I experienced perhaps 3 years of “ghost” orgasms, in which arousal is followed by what would have been an orgasm but instead, a non-event lacking sensation, and then a refractory period.

 

Following that, I had perhaps a 4-year phase of “ghost” orgasms with occasional weak orgasms, which gradually became stronger and more frequent.

 

At about 9 years post-Paxil, I was fully recovered from PSSD. As I was menopausal before I came off Paxil, my belief is younger people with full complements of sexual hormones will tend to recover faster. However, recovery from PSSD can be almost imperceptibly gradual, which can be masked or even impeded by the very understandable frustration, anger, and despair brought on by the condition.

 

1

 

I had many, many other withdrawal symptoms that occupied my mind other than libido. I was more or less housebound for about 5 years; I had no interest in sex.

 

My one case is not that important. Everyone is going to be different. And, as I've said before, I think of PSSD as only one among a spectrum of very troubling symptoms of neurological dysregulation. If you only have PSSD, things could be a lot worse.

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Spruce30

Ok. So your libido eventually came back. Is this correct?

 

I had a lot of other withdrawal symptoms too, especially when going through benzodiazepine withdrawal. I was also house bound at times during withdrawal , and was agoraphobic on and off for years, and struggled to socialise or be employed ( I occasionally managed to do part time voluntary work). 

 

Despite all of this, all of my other withdrawal symptoms mostly paled in comparison to the misery and suffering caused by the PSSD. Also the PSSD has been the longest withdrawal symptom I have had, and the only one that hasn't yet recovered. The only other withdrawal symptom that has come close to rivalling PSSD in unpleasantness was the severe anxiety I got when I tried to come off benzodiazepines too quickly the first time I tried to come off them.

 

I have talked to a number of other people who have PSSD and have also had a whole spectrum of other withdrawal symptoms. Nearly all of them have said that PSSD has been their most distressing  and most protracted/ long lasting symptom from withdrawal.

 

I can therefore understand why some people seem to "fixate on PSSD" and not be as concerned with other withdrawal symptoms.

 

I also appreciate that for some people, other withdrawal symptoms can be more unpleasant, and the PSSD is not the  main symptom that causes the most distress.

 

 

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potions

Spruce, you say you have healed from all other withdrawal symptoms aside from PSSD. Have you healed from anhedonia/emotional blunting too? Or would you consider that part of your PSSD experience (i.e are you still suffering from it)?

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Spruce30

Sorry; yes, I still have the emotional blunting/ numbness. I do consider it linked to the PSSD. I have seen improvements in the emotional blunting recently alongside the improvements in the genital anaesthesia.

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potions

I am glad you have seen improvements. I hope they continue for you

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1Day
On 18/04/2018 at 11:02 PM, potions said:

1Day, I recently read escitalopramsucks’s topic. She had PSSD and was in total despair about her lack of romantic feelings. She recovered her romantic feelings I think 2 and a half years after coming off the meds. She posted this in another members’s topic, not her intro, so if you read her profile you’ll be able to see it.

 

Thanks Potions. 

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hussy

so how many of you have overall improvements in the pssd area? already

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Sunnyday

Hi everyone. I have a question about tca and srri when it comes to sexual dysfunction, a friend who is determined to go on antidepressants is having issues. Is it okay to ask here or should I sign up on the pssd forum?

 

Thank you, and hope all of you are doing okay. 

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potions

Someone on the PSSD Facebook group posted that she took an antipsychotic 35 years ago and still has numb genitals. She is the longest PSSD-type case I know of. She has not been on any other psychiatric medications since taking the antipsychotic that numbed her genitals and has been off that antipsychotic for almost 35 years.

 

Many other long term sufferers have been posting recently on the group with no improvements, including an 8 and an 11 year sufferer. Neither has experienced windows except one for two weeks in 2014. I’m wondering if the appearance of windows means that PSSD will not be permanent for someone while if someone does not have windows the hope is much lower?

 

I know brunyan has had consistent windows and waves for like 7-8 years now and he is still not recovered. Also Sonny on pssdforum has had windows and has had pssd for over 23 years. I don’t know if either of these people has been on any psychiatric/libido reducing medications since developing pssd but I don’t think they have (especially brunyan.)

 

Would you say that windows mean the hope for PSSD is much higher? Even if during windows, sexuality is not even close to how it was pre-SSRI? Just from my digging, it seems that many of the long term sufferers with no improvements have not seen (many) windows, but of course there are exceptions.

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potions

I just went through the introductions forum to find some old PSSD posters to see if they have improved since they last posted. I found four PSSD posters from 2011-2014: rainy, anacleta, Selena, and techtonicplatez1122 and messaged each of them asking if they’ve seen improvements. 3 of them replied and said they haven’t seen any improvements. One hasn’t replied. Most of them were already a few years off the meds back when they were posting (2011-2014) so now they can be probably be considered long term sufferers.

 

I think it’s nice to have hope and to spread hope about PSSD. But I think we need to at least consider the possibility that some do not heal from this, maybe even more than half. (Or at least don’t heal for many many years.)

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potions

(Improvements since they last posted)

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Zeipii

I have done a lot of analysis and talk with Potions and unfortunately I have come to the same conclusions. Potions has done a good work by making a chart of various cases from various forums. It is sad reading. Would be so great to be able to make a chart of success stories with the same ease. Very happy to receive it if anyone has made such a collection or list (?). And here I do not mean a repetition of the same 'classic' cases that we probably all know.... 

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potions

Can someone please provide some reassurance here? I’ve become extremely desperate. Aside from messaging past PSSD posters (all of whom that replied said that they haven’t seen any improvements), I made a chart of frequent posters on the Facebook group and gathered information about them, how long they’ve had pssd, if they’ve been on any psych meds/libido reducing meds since developing pssd, and if they’ve seen improvements. The overwhelming majority have seen no improvements and have been med free or med free for many years without improvements. And there are a considerable number of long term sufferers just in that group. I am extremely disturbed right now about PSSD. I looked on pssdforum today and I found some really disturbing recent responses to a question by marybanana: “what are the chances of recovering naturally”:

 

OP Ghost:

”VERY LOW.

As in, I've rarely ever seen it (maybe a few times only).”

 

OP Juvo:

”This is hard to quantitate for many reasons. With the very low occurrence of people reporting benefits, we'd have to conclude that the chances appear to be low. This is the unfortunate side of flying under medical radar - There is no concrete data.  

It's also very nuanced. Did the person actually have PSSD in the first place? Is the recovery legit?  

These things are impossible to predict. Best advice to anyone, as I'm no longer a PSSD newbie, is to do something everyday that improves your situation, be it yoga, meditation, giving up alcohol, whatever.

What is ‘natural’? Everything you put in, on, around you is changing you. The people that recovered ‘naturally’ didnt do so without the help of some external force that helped trigger a change in their homestasis, whether they were aware of it or not.”

 

I really have looked through all of the forums and read countless accounts of people who have had PSSD for 7+ years with *no* Improvements. There is hardly any good news anywhere. If anyone would like to see my chart (I’ll cut out the names), you can PM me.

 

I’ve become almost suicidal again. If the drugs caused epigenetic changes to our  brains, why are people thinking recovery over time is likely? I don’t know what to believe and just don’t know what to do. My entire being is erased. I can’t even react normally or interact normally anymore due to extreme emotional blunting.

 

And a cure? We all know that’s not going to happen any time soon. I thought maybe stem cells could potentially fix the problem but I don’t think that will work either. If the problem is epigenetic especially. What can we do? Should I just give up?

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brassmonkey

Hi Potions--

"Can someone please provide some reassurance here? 

 

We have been offering you reassurance, success stories and guidance on this subject for almost a year now.  There is nothing more that we can say because it keeps falling on deaf ears. Over the past several months your persistence in looking for the negative has turned into an obsession to prove that you will never recover from this symptom.  This is going to be a self full filling prophecy unless you can somehow convince yourself to put as much effort in to finding the good as you have in searching out the negative.  It is a proven medical fact that a patient will not recover if they don't want to, and that is going to be the case in this situation.

 

The focus of this site is to help people safely remove psych drugs from their lives and bodies.  It is not about curing individual’s sexual problems.  I am truly sorry that you are having to go through this, but treatment and recovery of PSSD is out of the scope of our experience and expertise. 

 

I've also been instructed to issue you a warning point for the above reasons.

 

Brassmonkey

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hussy

Hi Potions. Brassmonkey is right. 

You are obsessing on the negative too much and you are asking for reassurance again and again.

 

I am med free 15 months now. I have seen improvements. From complete impotence . Now I see windows of partial recovery after every 15 days or so. I think most people do reach some kind of acceptable functioning after a couple of years or so. For me I think i will take maybe 2 more years to recover but maybe I will not be 100 percent. 

 

But right now I am functional to an acceptable level. my skin numbness is still there but I can have semi pleasurable sex 3-4 days a week. I would say I am 40 percent recovered but still a very long way to go. I am not taking any supplments. Im only exercising . I do have bad days of sexual functioning but windows do come eventually for me .

 

I think exercise helps ( lifting heavy weights etc) . I have been going to gym since last 3 months. you should do that do that too. atleast it lifts the mood. 

You should stop obsessing about PSSD . Give it a couple of years things will improve. stay positive and exercise. 

 

There are plenty of success stories around the pssd forum and the web. People do get better eventually. 

I hope this gives you assurance. Although a lot of other people have posted similar assuring replies to you.

 

and I hope that we will not see another of you negative posts asking for assurance again and again.

 

 

 

 

 

 

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1Day

I feel that I need to say something in Potion’s defence.  Whilst I can understand the moderators view, I can also fully understand Potion’s situation and the desperation that drives her to make the posts that she does on this website.

 

One of the big problems with PSSD, is that whilst reassurances are given here, these are not echoed everywhere else.  It is a bit like picking up two different newspapers; one with an article on the front page saying you should eat meat because it has various health benefits, and on the front page of the other paper there is an article saying stop eating meat because it causes cancer.  You are left with the simple question of ‘which do I believe’?

 

When Potions reads some of the posts/quotes etc. on other forums (which are genuine because I have seen them myself) I can fully understand her need to come here and basically scream, because she is so desperate and does not know what to believe.   I think we have all tried to reassure her, but I understand how hard it is to truly believe you are going to recover when you are in this situation.

 

I have emailed quite a lot with Potions and something that has become clear to me is that how we feel about the situation we are in is exactly the same.  The one difference is how we deal with it and let out our  feeling.  Everybody is different.  And whilst I fully appreciate that the purpose of this site is to support people in getting off and staying off medications, I think it is important to remember that PSSD is a truly debilitating condition - mentally as well as physically - and is very, very hard for any young person to deal with.

 

I hope that we can all continue to support her the best we can. 

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Altostrata

Please consider this: The Internet is a big place. Anxiety drives people to search for answers on the Web. When someone finds they are recovering from PSSD or other withdrawal symptoms, the motivation to post about the recovery anywhere diminishes. They get involved in other activities.

 

It's very possible that any desperate post from some time back is from a person who has recovered. The Internet being what it is, very often you can't reach that person again to find out how they recovered.

 

For example, for several years this person posted profoundly gloomy reports on PaxilProgress, a site that has disappeared. He full recovered from a range of withdrawal symptoms including PSSD.

 

On the other hand, people who are very frustrated by their symptoms are motivated to post more. They may drive themselves to higher and higher levels of despair and anxiety. These posts are vivid and memorable.

 

While we encourage people to come back and report success stories, not many do. However, by following Introductions topics, we see people recovering -- although slowly -- all the time.

 

Therefore, we don't believe "no one ever recovers" is true, and if you keep on repeating it here, you may be asked to stop it. While you're hurting yourself, you're also unnecessarily frightening other people.

 

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1Day
9 minutes ago, Altostrata said:

Therefore, we don't believe "no one ever recovers" is true, and if you keep on repeating it here, you may be asked to stop it. While you're hurting yourself, you're also unnecessarily frightening other people. 

 

I have often thought about this - that what people write on these forums has a huge effect on others.  And a certain person on a PSSD forum (Potions will know who I am talking about) needs to seriously realise that some of the things he has been saying recently could ultimately drive somebody to the edge.

 

And I can totally understand why people don't come back to post once they start to recover.  Somebody on here said a while back that 'you don't stay in hospital once you are feeling better'.  I think it is the same with this sort of thing.

 

However, I will state here and now, that once I have recovered I PROMISE to write the recovery story on this site! 

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Altostrata

Thank you, 1Day, that is a real contribution to the community.

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JanCarol

I have just a bit to add:  Potions, you may want to get face to face help.

 

While PSSD is not widely recognized and there are not support groups - there are support groups for men suffering erectile dysfunction, and you may find that there are others in the same boat as you.  There are also huge support groups for those who practice no-fap, which is an excellent way to turn your focus away from your dysfunction and expand other areas of your life.  https://www.businessinsider.com.au/what-is-nofap-2013-11  

Additionally, one-on-one therapy may be of use.  Focusing on other skills such as sensuality, communication, creative expression and cognitive therapy to help with your thinking patterns may be greatly helpful.  This is especially vital if you are in a relationship, and you believe that the relationship is dependant upon your "ability to perform."  It is not.  Many couples work through these things, and love comes from the heart - not lower down.

 

The most common healing pattern I have seen is this:  "I focused on family, sport, art, music, and forgot about sex for a few years.  Then, when I wasn't expecting it, and as I improved my life, my sexuality returned."  This is a common pattern of healing from antidepressants for men and women.

 

If you are feeling drastic, please see:  Help for Those Who Are Feeling Desperate or Suicidal 
 

I hope you see the sun today.

 

 

Edited by JanCarol
family

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