Currently working with doctors for first time and really worried

[Wantmyclitorisback]

Hi all
New here and trying to stop myself from worrying all the time!

My symptoms are only sexual, I don't have any of the emotional or cognitive ones. In fact, I feel much better emotionally since quitting SSRIs.

I am female, 37. Always had a high sex drive, no arousal problems in my past. I took Sertraline between ages 31 and 32 for nine months initially to treat panic disorder with agoraphobia. Quickly on taking the pills I noticed total genital anaesthesia - not in a sexual context, I was towelling dry after a shower. The patient leaflet said this was a side effect so I decided to give it a few months. After a few months the panic disorder that had kept me housebound for about 3 years at this point completely resolved - I booked a flight to Portugal to celebrate! The sexual side effects were still present but I felt I had to make a decision between the ability to have a sex life and the ability to have a life at all. It was a hard decision, despite how that sounds, as I enjoyed my sexuality and felt weird without it but I decided that given the symptoms would only be temporary it was worth it.

Shortly after this I met a man and began a relationship. At this point, the side effects really started to bother me so I tapered off the pills at about nine months following drs recommended schedule. All sexual side effects completely vanished but I had terrible discontinuation syndrome - vomiting lasting weeks and intense mental confusion - I couldn't have a conversation let alone attend work. I initially tried to switch to a different ssri to alleviate the discontinuation, but this made it worse. I was getting very ill, friends and bf were taking me to hospital because they didn't know what to do. Importantly, none of my symptoms were those i was initially treated for. In the end, I decided I had to take sertraline to make it stop.

I didn't have the courage then to come off them. I was on them again between 32 and 34 then did a very slow taper that lasted an additional two years. So I wasn't off pills until 36. During my time on the pills I was mostly asexual but I thought when I came off them it would all come flooding back like last time. 11 months later my genitals are still mostly numb. I have sex drive, probably back up to what it was previously - I think about sex probably 5 times a day (ish) and sometimes get spontaneously horny, but the horniness feels kind of weird and distant. This libido came back gradually. Recently I've noticed small signs of arousal such as vaginal lubrication when thinking about sex and some feeling in my clitoris. So long as I'm not actually touching myself there have been several times recently where I thought I was "back" but when I touch the clitoris it is still numb.

I'm still able to orgasm off I use a vibrator, but orgasm is very, very weak and sometimes completely pleasureless. Stimulation is mostly pleasureless too.

For the first 9 months after stopping SSRIs I just kept telling myself it will come back of I leave it alone so I didn't think about it much. I saw on a pssd forum that it can take 6 months so I thought nothing to worry about
But now it's been 11 months and my sex drive is getting higher I'm starting to find it very distressing, so I went to the Dr last week.

My Dr has asked for blood tests this week and then I have a vaginal examination next week. I just want to believe this will go away. I'm terrified it's permanent or that it's menopause.

[C12345]

Hi,

I wish I could tell you it’s all going to come back tomorrow. However, it’s very good I think that you’ve noticed improvements, and hopefully that will just continue. I’ve had sexual dysfunction for over one and a half years now (from escitalopram which I stopped over 1.5 yrs ago, it began on the drug which I then stopped pretty quickly but the dysfunction continued). I’ve noticed the smallest of improvements, that then sometimes go back, but overall there is small improvements happening. But it is a difficult situation to live with, as you know. I’m very lucky as I don’t have the emotional or cognitive effects, nor do I have genital numbness per se. My sexual response is different to what it was, and not nearly as pleasurable or relaxing. My orgasms tend to be completely numb (which could be argued to be a form of genital numbness I suppose). I have no desire to look at porn anymore, but this doesn’t really bother me, other than being an indication that things are messed up. I feel angry that I was never warned, as we all do, I feel grateful that it’s not worse. Sometimes I feel overwhelming grief over what’s lost, I cry, and that helps. Other times I cope with it much better. Sorry to go on about myself, wish there was something I could do to help. I hope your Dr believes this situation is to do with the meds (which I do) and is understanding even if there is nothing they can really do. At the beginning I was desperate for a drug to fix it, but I realise now, for myself, the best thing to do I feel is not to try any more medication, but to give myself time to heal. Trying medications is as we know very risky. I masturbate now through habit and hope (I’m single, female, 39 btw). Hope you can talk with your partner about all this?

Take care

[Wantmyclitorisback]

Thank you.

Actually I'm single and have been for five years. I suspect the pandemic did not help with any of this!

I'm hoping there is a strong psychological element for me, as I feel like - I dunno - like I can still feel "it" inside me waiting to come out. I'm wondering if I've got in the habit of expecting that I won't enjoy masturbation and therefore not enjoying it as a result. I think my expectation had been that everything round just come rushing back but my life is quite different now to how it was before I took the pills. I guess I sort of feel like something could reawaken inside of me if I met someone I fancied. I've noticed sexual feelings towards men in the last year or so. I think I'd be OK with just relaxing and seeing what happens when I meet a guy if the doctor can reassure me there is no physical change to my body. Difficult to feel hope until you've got that reassurance I think, but I overall prefer to think that I'm going to recover and that this is a temporary phase I will break through.

[Wantmyclitorisback]

Hi,

I wish I could tell you it’s all going to come back tomorrow. However, it’s very good I think that you’ve noticed improvements, and hopefully that will just continue. I’ve had sexual dysfunction for over one and a half years now (from escitalopram which I stopped over 1.5 yrs ago, it began on the drug which I then stopped pretty quickly but the dysfunction continued). I’ve noticed the smallest of improvements, that then sometimes go back, but overall there is small improvements happening. But it is a difficult situation to live with, as you know. I’m very lucky as I don’t have the emotional or cognitive effects, nor do I have genital numbness per se. My sexual response is different to what it was, and not nearly as pleasurable or relaxing. My orgasms tend to be completely numb (which could be argued to be a form of genital numbness I suppose). I have no desire to look at porn anymore, but this doesn’t really bother me, other than being an indication that things are messed up. I feel angry that I was never warned, as we all do, I feel grateful that it’s not worse. Sometimes I feel overwhelming grief over what’s lost, I cry, and that helps. Other times I cope with it much better. Sorry to go on about myself, wish there was something I could do to help. I hope your Dr believes this situation is to do with the meds (which I do) and is understanding even if there is nothing they can really do. At the beginning I was desperate for a drug to fix it, but I realise now, for myself, the best thing to do I feel is not to try any more medication, but to give myself time to heal. Trying medications is as we know very risky. I masturbate now through habit and hope (I’m single, female, 39 btw). Hope you can talk with your partner about all this?

Take care

Just wondering too, have you noticed any physical change to your clitoris? Mine is smaller and kind of buried under the hood. I feel like the hood is also kind of pale. It's very difficult to access the sensitive part now. From childhood (I started masturbating well before puberty) I masturbated prone by humping my hand. If I do this now I can't reach any part of the clitoris so it just feels like I'm bashing my pubic bone, but if I lie on my back and use my fingers and some STRONG porn I can kind of dig my fingers in far enough that I can reach the sensitive part under the skin. It's literally like it's retracted into my body and become buried. I'm hoping for a phimosis diagnosis and that they can do surgery, just because when I look online at atrophy it sounds like exactly what I'm experiencing and I don't *think* I'm close enough to menopause for it to be hormonal.

[C12345]

Hi,

I’ve not noticed physical changes to my clitoris, but I know some people have. In my opinion I would have thought it would be more likely to be the meds than early menopause. I too hope that if I meet the right partner something may awaken. I’ve heard of that happening with people. Good luck with the Drs.

All the best to you.

[Determined-Mind]

Sexual pleasure is primarily mediated by the opioid system (mu receptor).

Other neurotransmitters interact with it, such as melanocortin 4 (Vyleesi, Bupropion) and cannabinoids (cannabis, THC).

In terms of pleasure, are you at 0/10 for the clitoris or do you feel 1 or 2/10 or more?
How high are you with the vagina?
Do you feel pleasure with your breasts?

Have you noticed any changes in gustatory pleasure (sweet foods, etc.)?

Do you feel endorphins during or after sport?

Libido is primarily mediated by the dopaminergic system. This may explain why you have a libido but little or no pleasure. The neurological systems involved are different and independent.

[Wantmyclitorisback]

Thank you for your reply. I don't think I have the emotional symptoms you're describing. I don't do sport but I hike a lot and can feel the pleasure from that. I'm a bit emotionally numb in a weird way - like for me the most intense feeling i can have is live music and when I see live music now I have an odd numbness on my skin, but it feels like that's going away quite quickly and that I'm feeling more and more. It does normally take me a number of months for my brain to 'settle ' age ssris and I noticed a month or two ago that I was waking back up emotionally - starting to experience my intense emotions and feeling a lot more intense interests and drive. I definitely commented on it to friends just after new year or so that I could feel music again and I was starting to feel really motivated. I find personally that ssris reduce motivation and passion in all areas.

I'm also noticing some relatively rapid sexual changes even since I wrote the above! My clitoris sensation is returning. It is not what it was, but it appears to be coming back. I'm starting to think that the distress I felt over this was largely because my drive started to return before my arousal so the gap became noticeable. Last year I was not distressed as I also had very little drive. I have noticed a precipitous uptick in spontaneous arousal over the last few days, which has included vaginal lubrication and clitoral arousal. My clitoris was probably at 2/10 a week ago but feels not like 5/10 now if we assume 10 is what it used to be.

I'm not sure what's what at the moment. My biggest fear isn't even PSSD, it's hormonal failure, as this would mean definitely no kids. I have to wait and see what the blood tests say, although I think they're actually testing for a very wide range of things and I think the vaginal exam is to check for things like lichen sclerosis which would cause sensation issues to the clitoris. There is tightness of the skin in the vulva and a bit of dryness and burning. That could be ovarian depletion or it could be lichen sclerosis or it could be something else entirely.

The improvement I have seen so far seems to be related to psychological change (I realised my sexual fantasies did not focus on my arousal because I couldn't remember the feeling so I started to focus on that and felt a definite change) and additional simulation of the clitoris as I have been masturbating a lot more, which might just be reintroducing blood supply - who knows!

[Determined-Mind]

That's positive! It sounds like your sexual functioning is slowly coming back to life! I think you need to give it a few more weeks. Please be patient.

I hope you don't have any bad news with your hormones. In any case, you can focus on your recent changes, which seem to be on the road to recovery If there are hormonal problems, they won't necessarily be permanent.

Interesting to see that libido can re-emerge before full recovery of sensations.

[Wantmyclitorisback]

Blood tests came back normal and no one seems to suspect menopause. Instead my GP sent me off to A&E because I ticked too many boxes for cauda equina (I've also more recently had numbness around the rectum and lower back, including not being able to feel it when I go to the toilet - not even sure if it's related, though). I was 99.9% sure I did not have a spinal cord injury but the gp wants a CT scan to rule out anything gone amiss in my back. I've been referred from the hospital to an MSK clinic to rule all that kind of stuff out and feel pretty sure my back won't be involved as I still have *some* sensation, it's just muffled. GP taking it all very seriously, though, so that's really reassuring. I am not convinced what I have is PSSD without ruling out every other possibility so it's good to have a thorough check. Hoping some of their investigations throw something up, but if not then I found a uro/gyn who is also a psychosexual therapist and will pay to see her privately as she can explain to me the problem from both physical and psychological angles and that might help me understand it more.

[C12345]

Hello, Hope that all goes well for you, I’m glad they are taking it seriously. Sorry to hear about the additional numbness. Hope the uro / gyn that you’ve found is well versed in PSSD? Well done for finding them, and well done in general.