Female Sexual Function Index (FSFI) Results

Community Projects Survey basics
#1

This topic covers the results from the Female Sexual Function Index (FSFI) from our female survey participants.

Please note: Participants with no sexual activity prior to taking the drug were excluded.
The maximum score per domain is 6.

What is interesting is that these participants seem to have improved somewhat in their sexual function after quitting the drugs, though are still far away from baseline. Males by contrast typically get worse after quitting. Is this because our male data is predominantly finasteride and the lady respondents took mostly anti depressants or some isotretinoin? Does the antidepressant substance taken make a difference? Many AD users have taken different substances in the course of their therapies. How does that come into play? Or is there some underlying gender difference? These are interesting questions, but almost impossible to answer because of the huge variability in the parameters involved.

High level though, I would like to focus on the gender question. What do people from the PSSD and PAS communities think: Are woman under-represented? If true, why do you believe this is so? Is it because woman seem less susceptible than men? Or is because woman are less likely to participate in such community discussions?

1 Like
About the Survey basics category
#2

The 5th response is super interesting. Low sexual function before, more than double while on, and increase further on cessation. Am I reading that correctly?

#3

Yes, that’s correct in terms of the pattern but that result is associated pain.

#4

Ahh gotcha, I just downloaded the csv.

#5

That’s pain: They had low pain before and quite high pain while on drug, which got worse after quitting.

#6

I think it may be more difficult for women to acknowledge the situation because of cultural reasons. To bring an example from my personal experience: my psychiatrist, when he talked about sexual sides that may occur (nothing like this pssd he didn’t know anything about this), he was telling me like ‘yea maybe you can experience anorgasmia but you can still have sex, is not that you can’t get erect’ so he was completely denying my pleasure in the picture. Also when pssd happened he told me I was delusional and that women have not so strong libido, that now I was normal cause before I was ‘too sexual’. Now thinking about my younger self those words would have hit me differently than they did, because of shame (he told me that I was too sexual before ssris and he didn’t have informations whatsoever about my sexuality), and because of all the bullshit about woman sexuality. Unfortunately sexism is very real and we are not taken seriously as girls, specially young girls. My 20 yo self probably wouldn’t have reach out for help cause this thing made me loose so much time in figuring this thing out as a 25 yo so I can see how it can be very difficult. Also women bodies are not studied enough, we don’t even know about why menstrual pain exists. So I was constantly told that the pain and the disfunction was not real by many many specialists, gynecologist and psychiatrist.
As a psy patient also you are in the mindset that someone else knows better than you cause you are the crazy one, and as a girl I didn’t have a penis to prove my erection was not there.
It took me almost a year to figure it out.
Also I think that abuse can play a part, cause as women we have at least one even minor expirience with sexual abuse or something minor and specialist tend to say it’s because of that.
Also somentimes forums are not girl friendly so I was afraid to join for a long time.
I hope this can be helpful sorry if it was messy and for a little broken English.

10 Likes
#7

I think it’s very helpful, and that your English is good.

We are lucky to have you here and I hope that any women who read this will sign up and join in our projects, as you have done.

Thankyou @sara.

5 Likes
#8

Thanks a lot for your work guys :pray: :heart:

4 Likes
#9

Thanks for your insight and sharing, Sara. Unfortunately, many if not most patients affected by these syndromes will have faced denial from medical professionals. Doctors of all specializations are usually very busy dealing with patients, and their main information sources for on-going “training” are industry (pharma) sponsored. Because of this, many medical doctors live in a parallel world, which is heavily skewed by the marketing dollars of their pharma suppliers. Additionally, they have an intrinsic business interest to believe that the products which they sell to their customers are effective and safe.

For example, a very recent meta study from the highly respected Nordic Cochrane Centre in Denmark, which included 522 trials and 116,477 participants (the largest ever), came to the conclusion that

the current level of evidence in support of antidepressants is not sufficient to prove that they work better than placebo

Even if antidepressants overall do not seem to be very effective, it is clear that they often have substantial adverse reactions, which obviously can persist indefinitely after quitting. Overall, doctors are not acknowledging this, largely also because it is bad for their business. In summary, the main problem with many medical professionals is not a cultural one, it’s a money and profit driven one. If many doctors are nothing more than glorified pharma sales reps, who at the end of the day is at the side of the patient? Vigilance organizations such as the FDA are also corrupted by industry dollars, either directly or indirectly through politicians, many of which also don’t have a good track record with respect to integrity and being immune to corruption.

I shortly will be looking at the Short Assessment of Patient Satisfaction (SAPS) data and already predict that the medical professionals dealing with us patients will not be receiving a good report card.

No one should ever worry about their level of English. We are grateful for all respectful participation and specially the effort that our non native English speaking members are making to be part of the discussion.

4 Likes
Short Assessment of Patient Satisfaction (SAPS) Results
#10

What I meant was that on top of everything that we have to face as a group of people that suffers from this things (all that you mention) , I believe that for women we have another level of difficulty because of cultural reasons (sexism). So it’s just another intersection and different levels of stratification of the problem

6 Likes
#12

If men lose libido and sexual function then they are not able to have sex. Therefore, they are forced to confront the problem. Women who lose libido and sexual function can still have sex, it just isn’t as enjoyable and easy as before.

There’s a big difference between not being able to have relationships or children and being able to have these things but not deriving as much enjoyment from them as before.

The physical differences between men and women alone should account for differences in degree of recognization and confrontation of problem: men have more (negative) motivation. You could say they have the ultimate one: life or death of their genes. That is not the case for female sufferers. Needless to say, however, it is equally important to resolve for both men and women. Innocent loss of libido and sexual function is a terrible tragedy for anyone. Just thought it’s important to point out that this fundamental explanation is likely the most probable.

2 Likes
#13

Females who have been damaged sexually by Accutane (or ANYONE who knows about it) should fill out the MHRA government inquiry in the UK. They are looking into the sexual and suicide links. It does not matter where you live. We only have until Feb 2nd! Here is the link: https://www.surveys.mhra.gov.uk/5fa2caf33414eb1dd21958ad

2 Likes
#14

Your story breaks my heart. That doctor totally dismissed your issue. As if sexuality ends with ability to get an erection. Seems as if he was worried for himself. FYI, I did not take Accutane. So, I dodged this, but, I gave it to my son. He has many issues now. His Uro told him it was in his head as well. Jackasses. Did you fill out the MHRA survey?

#15

Hi @AnnaNim,

Sara got this condition from an Antidepressant, not Accutane/Isotretinoin.

Same dismissal by medical professionals no matter which drug sent you here, it seems.

1 Like
#16

Thank you for the correction. WHY TF do Doctors not believe people are damaged by pharmaceutical drugs??? Her Dr sounds like a a$$hat. If medications have the chance of side effects, then clearly you would have people WITH those issues in your practice. Duh. . My son’s Uro told him, “Well, I’ve never had a patient with damage from Accutane/Finn/Propecia, but you know people say things on the internet…” Like, you have one sitting Right. Here!

(You know, I took Zoloft for a time and it numbed me out. I actually got off of it due to my inability to do so…I was concerned it might be permanent due to something I’d read on the internet. Thankfully it went away. Sometimes I wonder if my lack of caring is not age/heartbreak, but that drug.)

I wish I had done the same with my son. Of course, we talked with in one or two days of him having an issue, and it did not help a bit. It was too late…Logic would think that if you get off a medication that the side effects ESPECIALLY of a Anti-Depressant would go away.

1 Like