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PitteLady Intro - My story - new member but not new to this...

Unread postPosted: Wed Apr 03, 2019 5:01 am
by PittieLady
Hi everyone,

I wanted to introduce myself and share my story. I am a 35 y/o woman who took Zoloft from age 16 to age 19. At age 13, I was finally dxed with an illness that had been plaguing me for a while and that was easily resolved by taking steroids for life. However, the experience of what I went through was traumatic - I was misdiagnosed over and over, almost died, was in a wheelchair, etc. 6 months later, I went a bit 'coo coo bananas" and finalized decided, to my resistance, to go on Zoloft. It was magical and it helped me tremendously. Because I was relatively young and struggling with my demons, I cannot recall the level of my sex drive prior. Nor had I had sex at that point. However, I do recall that more seemed 'normal' down there then and can remember experiences of blips of pleasure over the years.

When I went off the medicine, I started to feel off again and tried to go back on... but it didn't work. They tried to up my dosage and that also didn't work. I have this perception of myself of being an 'unsexual' person. I struggled with my sexuality for years and finally came out as a lesbian at age 24. However, I always felt mostly dead down there. I can have very muted orgasms - even you want to call a 1/10 "tingle" an orgasm, if I rub against a hard surface. However, if I engage in sexual activity with another person, use a vibrator or my hands - it's a complete waste of time. When I use a vibrator I have a true "pleasureless orgasm" where I feel it build up, I feel the contractions but I feel absolutely nothing. It's an absolutely demoralizing experience and it makes me feel broken. I'm sure you all can understand.

The thing I've most struggled with, however, is that I have always felt that "this was me" and "I am just broken" or "I am asexual." I figured there was no way I could be off a medicine for years on end and have that still be impacting me. However, lately, I'm beginning to wonder if I am truly "so broken" or if it is PSSD - especially after reading many of your stories. I was on the PSSD yahoo site 10 years ago, but didn't fully resign myself to believing that was what was going on....I figured it must be MY fault vs the medicines fault. That I am broken - not that these pills broke me.

I've been in a committed relationship with a woman for over 10 years and have never had an orgasm with her. Our sex life is ruined and she thinks it's her fault. I've explained to her it's not and this is "just how I am." However, again, I'm beginning to stop blaming myself so much lately and I realizing that perhaps I do fall into the small % of people that have lifelong side effects post SSRI.

At age 32 (3 years ago), I bit the bullet and actually went back on the Zoloft. I was at one of the lowest places in my life...was engaging in dangerous behavior to try to "heal" myself of a separate health issue I had, and realized I needed to go back on the drugs. And they worked again, and I got my life back in the sense I was less depressed and anxious. I held off on going back on the SSRIs since I figured 13 years was long enough for me to see if the SSRIs were the issue or if the issue would resolve itself. It didn't and I figured if the sex stuff wasn't there what difference would it make.

So I have a real love/hate relationship with this stuff. I tried EVERYTHING to fix the sex drive too -- dopamine agonists (requip, cabergoline), pelvic PTs, urologists, sex therapists, special creams, relaxants for 'down there,' wellbutron, buspar, a million herbs and supplements...and the list goes on. Recently, I even tried a peripheral nerve evaluation test to see if Icould benefit from interstim for urinary issues that targets the sacral nerves. I thought maybe if I gave my nerves a jolt, I could fix it, but it didn't seem to resolve the orgasm issue.

So only recently again, with the help of some good therapy, and am I starting to question if this blame that I'm ascribing myself for being 'born broken' is really true. I am starting to think I could have had a normal sexual life if not for the SSRIs. I am VERY nervous to go off of them again and don't see the point since I don't see it getting better anyway.

Lastly, I was interested to read someone's post about how he thinks this issue is connected to gut dysbiosis. My two main problems are 1) my low libido/inorgasmia/orgasmic anhedonia 2) lyme/candida/parasites and a generally leaky gut. I have been trying to resolve #2 for years as well and finally found a really good doctor to help. It's been REALLY hard to resolve but it didn't occur to me that my 2 issues are related.

So that's my story. It's been a real rollercoaster ride....I'm so sad that I've come back to this after 10 years with no resolution but I hope that, together, we can find a cure

Re: My story - new member but not new to this...

Unread postPosted: Thu Apr 04, 2019 4:07 am
by Timm Thaler
Thanks so much for sharing your story!!
And welcome to the forum.
T.

Re: My story - new member but not new to this...

Unread postPosted: Thu Apr 04, 2019 6:04 am
by Blueturtle
PittieLady wrote:Hi everyone,

I wanted to introduce myself and share my story. I am a 35 y/o woman who took Zoloft from age 16 to age 19. At age 13, I was finally dxed with an illness that had been plaguing me for a while and that was easily resolved by taking steroids for life. However, the experience of what I went through was traumatic - I was misdiagnosed over and over, almost died, was in a wheelchair, etc. 6 months later, I went a bit 'coo coo bananas" and finalized decided, to my resistance, to go on Zoloft. It was magical and it helped me tremendously. Because I was relatively young and struggling with my demons, I cannot recall the level of my sex drive prior. Nor had I had sex at that point. However, I do recall that more seemed 'normal' down there then and can remember experiences of blips of pleasure over the years.

When I went off the medicine, I started to feel off again and tried to go back on... but it didn't work. They tried to up my dosage and that also didn't work. I have this perception of myself of being an 'unsexual' person. I struggled with my sexuality for years and finally came out as a lesbian at age 24. However, I always felt mostly dead down there. I can have very muted orgasms - even you want to call a 1/10 "tingle" an orgasm, if I rub against a hard surface. However, if I engage in sexual activity with another person, use a vibrator or my hands - it's a complete waste of time. When I use a vibrator I have a true "pleasureless orgasm" where I feel it build up, I feel the contractions but I feel absolutely nothing. It's an absolutely demoralizing experience and it makes me feel broken. I'm sure you all can understand.

The thing I've most struggled with, however, is that I have always felt that "this was me" and "I am just broken" or "I am asexual." I figured there was no way I could be off a medicine for years on end and have that still be impacting me. However, lately, I'm beginning to wonder if I am truly "so broken" or if it is PSSD - especially after reading many of your stories. I was on the PSSD yahoo site 10 years ago, but didn't fully resign myself to believing that was what was going on....I figured it must be MY fault vs the medicines fault. That I am broken - not that these pills broke me.

I've been in a committed relationship with a woman for over 10 years and have never had an orgasm with her. Our sex life is ruined and she thinks it's her fault. I've explained to her it's not and this is "just how I am." However, again, I'm beginning to stop blaming myself so much lately and I realizing that perhaps I do fall into the small % of people that have lifelong side effects post SSRI.

At age 32 (3 years ago), I bit the bullet and actually went back on the Zoloft. I was at one of the lowest places in my life...was engaging in dangerous behavior to try to "heal" myself of a separate health issue I had, and realized I needed to go back on the drugs. And they worked again, and I got my life back in the sense I was less depressed and anxious. I held off on going back on the SSRIs since I figured 13 years was long enough for me to see if the SSRIs were the issue or if the issue would resolve itself. It didn't and I figured if the sex stuff wasn't there what difference would it make.

So I have a real love/hate relationship with this stuff. I tried EVERYTHING to fix the sex drive too -- dopamine agonists (requip, cabergoline), pelvic PTs, urologists, sex therapists, special creams, relaxants for 'down there,' wellbutron, buspar, a million herbs and supplements...and the list goes on. Recently, I even tried a peripheral nerve evaluation test to see if Icould benefit from interstim for urinary issues that targets the sacral nerves. I thought maybe if I gave my nerves a jolt, I could fix it, but it didn't seem to resolve the orgasm issue.

So only recently again, with the help of some good therapy, and am I starting to question if this blame that I'm ascribing myself for being 'born broken' is really true. I am starting to think I could have had a normal sexual life if not for the SSRIs. I am VERY nervous to go off of them again and don't see the point since I don't see it getting better anyway.

Lastly, I was interested to read someone's post about how he thinks this issue is connected to gut dysbiosis. My two main problems are 1) my low libido/inorgasmia/orgasmic anhedonia 2) lyme/candida/parasites and a generally leaky gut. I have been trying to resolve #2 for years as well and finally found a really good doctor to help. It's been REALLY hard to resolve but it didn't occur to me that my 2 issues are related.

So that's my story. It's been a real rollercoaster ride....I'm so sad that I've come back to this after 10 years with no resolution but I hope that, together, we can find a cure


I’m very sorry that you are going through this and have had such a difficult time with PSSD. I have similar symptoms to you as well, physically numb groin and orgasmic anhedonia etc

Wellcome to the forum.

Re: My story - new member but not new to this...

Unread postPosted: Thu Apr 04, 2019 3:10 pm
by PittieLady
Thanks guys! Because I'm back on zoloft I almost feel bad to be here bc I know if I cant have an O off them I surely won't on them. Now that I'm feeling more sure its pssd and not just me being born this way, I want to ween myself back off the zoloft but I'm scared I'll go nuts again. Any supplements any of you have tried that were close to the RX kind? I went on for anxiety and OCD/hypochondria. Maybe like a SJW? Not sure how good that is for anxiety or if it's just for depression. There are things I'm pursuing, like interstim for my bladder dysfunction that treats the nerves but know nothing I try will help while I am back on the zoloft. Granted given my track record I'm feeling very far from optimistic I wont be in the same boat but am at a place to maybe try again... but scared. Guidance and advice very much appreciated!

Re: PitteLady Intro - My story - new member but not new to this...

Unread postPosted: Tue Apr 23, 2019 5:55 pm
by PittieLady
For mesolimbos thread:


1- What is your gender? Female

2- Why did you take antidepressants in the first place? and for how long were you on them? which med? ANXIETY/OCD. Zoloft - from age 16 to 20. I was then off from age 20 to 32 and went back on from 32 to 35 and am weaning myself off again. Note - sexual problems remained from age 20 to 32 when i was off.

3- How was your sexual and emotional function before antidepressant intake? I was only 16 and going through a lot of emotional and personal stuff, so hard to say, but I think I was much more "normal" pre SSRIs.


4- What are your symptoms exactly and when did they start? sexual dyfunction alone, or cognitive/emotional/hedonistic as well? which symptom is bothering you the most? I have no interest in sex / very low sex drive. When I am aroused, which is infrequent, I either have a very weak orgasm (1 or 2/10 on pleasure scale) or a pleasureless orgasm (0/10). When I use a vibrator, I am able to quickly bring myself to orgasm and know that my vagina is contracting, yet i feel 0 pleasure. It is very frustrating and upsetting. I can experience a weak/muted orgasm when I rub my legs together or on a hard surface.

5- What meds/suppplements have you tried so far?
* Buspar
* Wellbutrin
* Inositol
* Maca
* Cabergoline
* Ropinerole
* DHEA
* Testerosterone
* Pregnenalone
* Viagra (even though I'm a girl, I did try it briefly)
* Suppositories to relax pelvic floor
* various creams to increase bloodflow
* Adderall (This DOES help my libido, but not my orgasms)
* Next on my list to try is ADDYI (flibanserin) - I have a consult with them to see if I can get the 8 week free trial


6- Do you have access to meds without prescription (buy online), or would strictly require a prescription for meds to try?
* I've used AllDayChemist before but I know they don't have everything. I'm able to use that and any other legit sites you'd recommend.

7- Can you tolerate galicky foods? what about proteins? I take digestive enyzmes to help me break down food becuase I have a lot of gut dysbiosis and other challenges from lyme/parasites/candida. I think the lyme may have triggered a bunch of gastro issues. I see a doc for this who has been really helpful in getting the lyme under control. Parasites and candida have been tougher. Candida has been tough to completely eradicate despite strict diets, supplements, etc. It's a bear.

8- Have you done any blood testing? what were the results? Yes. My hormones are all out of whack (I have Addison's Disease). Almost no Testerosterone or DHEA. However, I've tried the T patches and take DHEA orally and it raises my level but doesn't impact my issue. I also have hypothyroid, and long term addisons (since age 13). So my ACTH is off the charts, etc. I also have lyme and co-infections. I do have the mthfr a1298c defect as well - my lyme doc found that. Probably a bunch of other stuff I'm forgetting...I'm a mess ;)
PittieLady

Re: PitteLady Intro - My story - new member but not new to this...

Unread postPosted: Tue Apr 23, 2019 6:02 pm
by Mesolimbo
As I've recommended to you before, Flibanserin is the most promising agent for your condition. Add to it 25 mg Baclofen b.i.d. and let me know how it goes. Let's start slow.

Btw, can you acquire Buprenorphine?

Re: PitteLady Intro - My story - new member but not new to this...

Unread postPosted: Tue Apr 23, 2019 6:04 pm
by PittieLady
That's encouraging ! I'm glad you still feel that way after reading my story. I'll check out Baclofen too. Thanks for all you are doing for the forum!

Re: PitteLady Intro - My story - new member but not new to this...

Unread postPosted: Tue Apr 23, 2019 6:07 pm
by PittieLady
Found baclofen on ADC but not bupheneronine

Re: PitteLady Intro - My story - new member but not new to this...

Unread postPosted: Thu Apr 25, 2019 10:09 am
by Mesolimbo
PittieLady wrote:Found baclofen on ADC but not bupheneronine

OK. Try Flibanserin first on its own and report here how you feel after taking it for a week. Then add Baclofen if enough improvements haven't been achieved.

Re: PitteLady Intro - My story - new member but not new to this...

Unread postPosted: Thu Apr 25, 2019 10:31 am
by PittieLady
Good plan and will do- both are on their way! Fingers crossed!