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Rbvdk: PGAD/PSSD or OCD?

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Rbvdk

Hi, I found this website from someone's post who seemed to be going through the same as what I am.
Sorry if this is long but I'm not sure which info is necessary!
I was taking Citolapram for alittle over 2 years, mostly 20mg but I upped to 30mg near the end. I weened off them within a week but after almost a month I went back of them (20mg). I only stayed on them for a week and then came off them cold turkey. About 7 or more weeks since, I randomly woke up one day with PGAD. It's a horrible, progressive, non-curable disorder that makes your genitals feel constantly aroused, sometimes stabbing, burning, feeling the need to pee, zap feelings and a lot of throbbing.

I've had this for a month now and feels worse these past 2 days (coincidentally I was pescribed Amitriptyline 10mg but after 2 days of taking them I decided I don't want to go back to ADs - apparently PGAD is mostly caused by withdrawing from ADs) I've had so many breakdowns because of this and there is no way I can live with it, especially because it can cause spontaneous orgasms and a lot of pain which I haven't got yet. I'm so scared and my doctors have no idea about the disorder and just try to convince me it's in my head which despite my obvious symptoms and causes I'm hoping it is.

My history of OCD could explain it too. Before taking ADs I had a fear of farting in public which as stupid as it sounds, kept me house-bound for years. It went away after I took ADs and started college. Then a year later I had a bad sickness bug which led me to a fear of throwing up, with that I felt sick literally every single day and not always just mildly. I had tests but nothing explained it. Then I started hearing alot about PGAD just before mine started, once mine started my sickness has completely gone (so all this time it must have been in my head which is crazy because I almost threw up it was so bad). And now I'm getting all these symptoms of PGAD constantly.

But I'm still not convinced it's all in my head because it is a fact that withdrawing from ADs too fast can cause it, plus I think I have some damage in my pelvice since I went on an exercise bike during my 2nd withdrawals. This gave me what I thought was piles in my perineum which went away after a week and then came back with my PGAD. I have a huge skin tag in my perineum which fills and becomes solid if I'm too active and I start getting a pain around it (in my legs/butt cheeks). I'm thinking I've damaged my pelvic floor and that these things could be connected? Although the PGAD didn't start straight away?

I'm sorry this was so long but I am so so terrified of having this disorder, it is honestly such a horrible, embarrassing, painful and hopeless thing to live with and has always been my biggest fear since I learnt about it. I have so many things that could have caused it which makes me think that maybe it isn't just in my head. It's driving me crazy and if anyone has any hope or experience like this I would really love to hear from you. Sorry again for the long post.

Edited by Shep
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Shep

Hi, Rbvdk.

 

Welcome to Surviving Antidepressants (SA).

 

I'm glad you found us for information and support. I don't think this is all in your head, as you say, because withdrawing from these drugs can cause the symptoms you're describing.

 

It will help to know more about your drug history. I see you were on Amitriptyline, but only for 2 days. Other than Amitriptyline, is Citolapram your first and only psychiatric drug?

 

You may want to reinstate, especially since it's only been 7 weeks since your cold turkey off Citolapram. 

 

Please note you may not need to go back on the full dose that you came off of, but on a smaller dose. This is because your central nervous system (CNS) may be hypersensitive to this (and any other drug or supplement) now.  Here is more information on reinstatement and tapering off Citolapram:

 

About reinstating and stabilizing to reduce withdrawal symptoms 

 

 

Tips for tapering off Celexa (citalopram)

 

And some general information about coming off antidepressants:

 

What is withdrawal syndrome? 

 

The Windows and Waves Pattern of Stabilization

 

 

PGAD and PSSD are withdrawal symptoms, and I think you'll feel better knowing that we have other members dealing with these symptoms. Please see these threads for more information:

 

Persistent Genital Arousal Disorder (PGAD)

 

Post-SSRI sexual dysfunction (PSSD)

 

Please kindly fill out your signature so we can easily see your drug history. Here's how:

 

Please put your withdrawal history in signature

 

Let us know what you think about reinstating. 

 

This is your thread to list your symptoms and to ask plenty of questions. I'm glad you found us for information and support. 

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ladybug

Wow, Rbvdk, I had to respond because it's crazy how much I can identify with your story. I've also had OCD since I was a child and in middle school I was convinced that I was farting too much and my farts were smelling up the school! I even played it out on my mind that everyone  knew about it but wasn't saying anything because it was a "medical condition" so they weren't allowed to. As if that was even possible! It got so bad that I started taking laxatives daily because I discovered that if I evacuated my bowels in the morning I would have less gas. Of course this eventually made my stomach problems much worse! I saw a few doctors and one told me it was because I was swallowing too much (indeed one of my "rituals" was to swallow a certain number of times.) I missed a ton of school due to the stomach/anxiety issues and this particular obsession followed me into high school. I finally ended up dropping out and attending an alternative school where it wasn't so structured and I was able to come and go when I wanted to for the most part. This helped a lot (in regular school I always felt trapped) and the obsession went away.

 

BUT, I then ended up developing emetophobia (fear of vomiting.) At that time it was so bad I carried a bottle of anti-emetic wherever I went. My anxiety and stomach issues are completely intertwined so if I'm ever anxious I feel sick to my stomach and fear I might vomit. Unfortunately, I still deal with the issue to this day but it's gotten better. I do always have to know where the bathroom is in public places, etc. But I actually threw up a couple of weeks ago and it was fine. The anticipation and fear we've built around it is so much worse than the actual act!

 

Ok, so fast forward to recently. I went without sex for over six years (thanks, Paxil!) and when I finally had sex again for the first time I developed a nasty yeast infection. Since I had never had a yeast infection or problem with my ****** in my life I wasn't sure what it was and it took over a week before I got a diagnosis and treatment. After that it's been all downhill. I don't know if it was a shock to my ****** or what but I've been plagued with issues ever since. Constant yeast infections, tried everything under the sun. I get them before, during, after my period, if I have sex, even if I just masturbate. When I don't have a current yeast infection, my ****** is just sooo uncomfortable. I get the throbbing, stabbing pains, too much discharge, feel like I have to pee, etc. It goes on and on. Doctors don't give a damn and when you've tried all conventional methods they throw their hands up and that's it. Recently by reading on the internet I discovered my issue might actually be Cytolytic Vaginosis so I've started treatment for that but I've basically lost all hope of ever feeling normal down there again. It's horrible and makes me so depressed. Coincidentally, since I have been tapering so long and also on forums like these for over a decade I know all about PGAD. Even though I don't necessarily feel aroused I do feel the throbbing, etc. So I've definitely obsessed that I may have it or something worse and it's permanent. The thought of that terrifies me since I've already been dealing with this for almost two years!

 

I'm sorry for the long post (if you read my other posts you'll see I have trouble being succinct) but I just had to reach out to you and let you know YOU ARE NOT ALONE. I know how horribly scary and disheartening this all is but we have to believe that we will improve somehow. Please know I'm here if you ever need to talk to someone about this crap. Welcome to SA!

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Rbvdk

Hi Shep thank you! Yesterday my PGAD has been a lot better (although I was laying in bed all day) and it still feels ok today besides the odd twitching, sensitivity and shaky feelings. Although I just sat up right now and it feels aroused/itchy again ugh. I'm wondering, if it doesnt get any better in say a month, would it be too late to go back on Citolapram? I'll make a signature now thanks, I wasn't sure how to do it. But yeah Citolapram was my first ever drug. :)

 

Ladybug! I can't believe how similar we are! I ended up having to get home-schooled because of my fear of farting lol! It all started because I went to church with horrible smelly wind one day and I panicked so bad I left straight away and was so afraid since, the fear just got worse and worse over time, typical OCD.

 

Yeah throwing up was definitely not as bad as the actual fear. And sometimes I felt so sick I just wanted to throw up to get it all out! I'm sorry to hear about your thrush thing, I really really hope it gets better for you, it sounds so annoying. Do you think maybe the throbbing is just apart of it rather than it being apart of your PGAD fear? In fact do you think it could be possible the whole thrush thing is apart of OCD too? Brains are just evil sometimes, they can cause severe pain (like chronic conditions) for people without any mental problems, so I don't doubt they can cause things like this. I'm hoping so anyway... I would much rather it be in my head than a real physical thing.

 

Doctors are so annoying! They keep prescribing me piles cream for something that they even said wasn't piles! It's not even something that can be helped! They're useless, I'm glad we have forums like this. Sorry I seem to write long posts too haha!

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Shep

 

 

I'm wondering, if it doesnt get any better in say a month, would it be too late to go back on Citolapram? I'll make a signature now thanks, I wasn't sure how to do it. But yeah Citolapram was my first ever drug.  :) 

 

Hi, Rbvdk.

 

Reinstatements work best sooner, rather than later, so it may be best to reinstate a small amount now, stabilize, and then do a careful taper. 

 

When you tapered off in August and then reinstated in September, what were your symptoms? 20 mg may have been too high a reinstatement. 

 

I've asked the other moderators to weigh in because if you do decide to reinstate, I'm not sure what dose to recommend. Because the CNS becomes destabilized when you come on and off these drugs, usually a much lower dose is recommended. 

 

I'm glad this is your only AD. That does make it easier.

 

 

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Rbvdk

Well I came off them in the first place because I started getting headaches every day as well as feeling foggy, when I went back on them in September I felt exactly as if I hadn't stopped them and still got the same headache and stuff, that's why I came off them again. I realise now that it was probably because I took it at different times each day sometimes with a huge time gap.

 

Are you sure going back on them will work after so long? I was hoping to go to a pelvic floor specialist before deciding so I'd know for sure if it was from antidepressants and not another physical reason. Only problem is it'll take atleast a month to see one. :/

 

Thank you so much for all the info and support! :)

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scallywag

Rbvdk -- Welcome to Surviving Antidepressants (SA)

 

There's a who joined in June this year who was dealing with PGAD. She found some patterns and one cause for the symptoms being stronger at certain times than at others.

Link to her introduction thread -- Elexis: Tapering fluoxetine.

 

You may find it helpful to take notes on paper of your symptoms and the times of your dose(s). This post has a useful format for a daily log:

Take notes of doses and symptoms

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Rbvdk

Thank you Scallywag! I think I've read this post before aswell as Hopefull's which gave me a lot reassurance and hope. I am so happy for her. :) I've been keeping note of my symptoms, yesterday and today have been great, I have no arousal/itching except for like 2 second flare ups whenever I start over-thinking about it. Everything still feels weird, like weak and shaky/tense... but I think that's just my muscles. Sometimes I feel completely normal though :) I have been laying down pretty much all day though and have only sat to eat or drink. Sometimes I walk around my house for a few minutes too just to stretch my legs. I have college on Tuesday and want to just rest up as much as possible before having to sit there for 6 hours... :/

 

Does anyone know if waiting another month before going back on Citolapram will still work well if I still have PGAD by then? I really wanted to see a pelvic floor specialist first so I can definitely rule out it not being caused by damage from the exercise bike or whatever.

Thanks!

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Rbvdk

Sorry for double posting but I'm going the doctors today to get Citolapram back, I'm not sure when I'll start taking it though. But it's been about 13/14 weeks already since I last took Citolapram, is it already too late to reinstate? If someone could answer asap it would be very helpful as I might start taking them straight away if I have to. :)

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scallywag

You can reinstate that far out, it's just that predictability decreases as the time from last dose increases.  Some people have had success reinstating 6 months out, others react negatively to a reinstatement at 4-6 weeks. Being cautious about this unpredictability is what guides our suggestions of  very low reinstatement amounts.

 

Get the prescription. If you pay for your prescriptions from your own wallet, when you get it filled ask for a 2-week supply rather than filling the full 30 or 90 days. If the reinstatement works, you can get the rest of the scrip filled. If it doesn't you won't have a large number of tablets/capsules of unused medication around the home.

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Rbvdk

Thanks for the reply :) I've gotten 30 days worth of 10mg Citolapram. I'm worried about taking it because at the moment my pgad isn't so bad and I'm hoping it's actually healing. What are the chances I'm healing compared to it just being a window? I've had it for a month now. And if it is healing, is it still ok to go back on Citolapram? I'm thinking of cutting it in half and taking 5mg to see how that goes before I up it.

 

Sorry for all the questions, I wish I could ask a doctor this but they seem to not know about even half of the things that we're all going through. They can be so ignorant too. :( Thankfully I've been referred to a specialist, not sure how long it'll take to see them though. I just hope they know about pgad.

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scallywag

Please do not take 10 mg to reinstate.  Can you hold off for a day or two while we discuss what dose makes sense?

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Rbvdk

I think I should mention now that I don't know anything about the liquid technique and I have a huge phobia of needles :(

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Altostrata

Hello, Rbvdk.

 

We generally see PGAD very gradually going away on its own.

 

Taking another psychiatric drug such as citalopram for post-withdrawal PGAD is unpredictable. When your body has been upset by a drug, taking more drugs can upset it more.

 

You seem very anxious about a lot of things. Are you seeing a therapist? Staying calmer in times of trouble is a good skill to have.

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Rbvdk

Hi :) That's really good to hear. It's absolutely terrifying when you search PGAD online because all you see is "no cure" "gets worse" "life-time chronic condition" I really do want to try and see if this goes away on its own so I don't have to resort back to Citolapram.

 

Yeah my anxiety was actually fine until PGAD. In fact that and my depression went away while taking Citolapram and even after the first set of withdrawals. I felt more amazing than ever. Now that I've gotten PGAD I'm an absolute mess, I get depressed and panicky over the slightest thing. Like in college when I see my classmates dancing around and being happy (Christmas lol) I just start breaking down because I know if I always have this PGAD I can never be like that again. Plus everything seems to remind me of it now like some kinda trauma (I actually have PTSD from abuse and it's pretty much like that). I don't feel like myself at all, I'm just full of fear, even my dreams are just of PGAD and they're so vivid and feel tiring. Sorry for going on, I'm actually having a breakdown at this minute cos it started coming back after sitting for too long. :/

 

I'm on the waiting list for a councillor but I don't know how long it'll be, in the mean time I just try to sleep and distract myself with games and tv.

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Rbvdk

Update: My PGAD has been worse today. I finally decided to risk reinstating Citolapram. I cut a 10mg in half and took the smallest half. I'm scared to death that it might just irritate my PGAD more. I still have no idea what exactly is causing it. High dopamine, hormones, hypersensitive central nervous system, physical injury, even just OCD... I'm just risking that 4 of those things have a very slight chance of fixing this... Also I don't think I've ever read about someone's PGAD going away without reinstating. :/

 

So now that I've committed to this.. does anyone know how long it'll take for me to stabilise? Will my PGAD sometimes get worse before getting better? And when should I up my dose if I feel no effects at all?

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scallywag

5 mg, ½ of a 10 mg tablet, is a rather large reinstatement. You may wish to take ¼ of the tablet instead of ½.

 

From yesterday:
 

...Taking another psychiatric drug such as citalopram for post-withdrawal PGAD is unpredictable.  ...

 
The unpredictability refers to both the effectiveness of the reinstatement and how long it may take for symptoms to stabilize.
How long to stabilize after reinstating or updosing

 

Please be attentive to your symptoms and take notes on paper.

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Rbvdk

Sorry I panicked and already took 5mg today, is it too late to take lower? :(

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scallywag

Frankly, in your situation I would stop the reinstatement and wait out the symptoms. You know your situation and symptom intensity; your decision may be different.

 

It is not too late to adjust your dose. If you are confident about testing reinstatement, just make your next dose lower.

 

If I were in your situation and wanted to continue the reinstatement, I would look at taking 1 mg or less of citalopram. The easiest way to get that is to make a liquid. The links are above.

 

If you dissolve a 10 mg tablet in 100 (one hundred) ml of water, you get a solution where 10 ml = 1 mg.

If you dissolve a 10 mg tablet in 10 (ten) ml of water, you get a solution where 1 ml = 1 mg.

You will need to refrigerate the liquid. It's best to discard the solution after 4-5 days because your solution won't have the additives to prevent mould/fungal/bacterial growth as a commercially produced liquid.

 

The syringe mentioned is an oral syringe, similar to a eye-dropper, not a needle. You use suction to withdraw a dose from the citalopram solution.

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Rbvdk

I wish I could but I'm so worried, especially because my symptoms felt worse today for no reason and now that I've taken one already. If I just knew the exact cause of my pgad it would help, it's sad this condition is so unknown.

 

Thank you so much for all the info, I'm not very good at these kind of things and I've never done anything like this before. I'm not sure how to dissolve it either lol. :/ I think I'd be less likely to mess it up if I could just cut it in quarters so that would be about 2.5mg?

 

Also are you sure my body won't react badly to going from 5mg one day and then suddenly lower after?

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scallywag

Dissolving a tablet is not much different than putting salt in water for cooking grains or vegetables.

 

Please read the links I've posted above.

 

I don't know how your body will react to a change after one day. I am certain that negative effects of reinstatement, if any arise, will be less at a lower dose.

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Rbvdk

Sorry I didn't see the link! :)

 

I really appreciate everything, all the support and info. Thank you so much again. :) I think for the sake of my anxiety I'd rather not be too dramatic from the 5mg and just do the 1/4 cut, and even that scares me a bit so I'm not entirely sure if it's worth it. I could get negative effects from staying on this high dose but I could also get negative effects for lowering it.. :/

 

I wish I wasn't so impulsive today but I don't dare stop suddenly now, I can't imagine that doing anything good. I wish I waited for your post but today was just one of the worse days I've had, especially emotionally, I was desperate for some hope. Anyway I'll be sure to update with any changes. :)

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Rbvdk

I woke up a few hours ago and I have completely no PGAD at all O.o can reinstating happen that quickly?? Then again it's still morning but this is the most normal I've felt in forever! No tingling or twitching and I don't have that weakness feeling I've had 24/7 since I got PGAD. I actually slept good again and I even have a headache just like I used to on Citolapram! Ive never felt so hopeful about a headache before lol! I'll update if anything changes, knowing my luck it probably will lol I'm going to be on my period any day now too I'm not sure if that is just helping it somehow. I hope so much that it's just gone for good!

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Hopefull

Hi RBVDK,

 

I want to let you know that PGAD does go away. I still occasionally experience muscle twitching and spasms but there is no feeling at all. It happens as I drop the Mitrazapine dose. I did not have it for a while and it happened recently when I dropped the dose. I know too well how you are feeling and the ignorance displayed by some doctors.

When I was dealing with PGAD symptoms that is all I could think of. I was also dreaming about it. It is really horrible.

The good news is that it eventually goes away. I truly hope that reinstatement works for you, it sounds like it already has. I had all the symptoms that you have described. You will heal and get better. Stay positive. Best wishes, Hopefull. :)

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Rbvdk

Hi Hopefull!

 

I am so so happy for you that it's pretty much gone away, especially the feeling as that's the worst. :) The feelings are fading very fast, I used to have it 24/7 and now since the weekend (except for one bad day) I just have 1 second spikes and that's only if I actually concerntrate on it. I still get twitches and sometimes a sharp feeling but they're very mild especially after going back on Citolapram. It's only been 2 days but there's no harm in being optimistic. :)

 

I just wanna thank you because your story gave me so much hope which I think helped my recovery. It was the first I ever read of it getting better. That was after searching for weeks and only finding depressing hopeless stuff. I hope you make a complete full recovery very soon and can forget all about the trauma and anxiety it has caused.

 

Thank you so much again and take care. :)

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Hopefull

Hi RBVDK,
You are most welcome! :) I am glad that you are feeling better. The spikes are normal as your body adjusts. Let your self heal for a while, before attempting to come off Citolapram. When you do decide to come off it, taper very slowly.
Stay strong and positive and you will come through it. The whole thing is traumatizing because your brain is doing weird things that was caused by AD'S.
I am glad that my story has given you hope. Learn to be patient and it does take a long time to heal. Take it easy enjoy your life. Best wishes to you, Hopefull. :)

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Rbvdk

Hey :) That's good to hear, I'll definitely do it very slowly this time lol :)

I hope it's ok if I ask, but when you were on your period did your pgad feel any different? Mine still feels the same except the spikes are a bit stronger, but yesterday I had what felt like a vibration feeling which lasted hours along with an electric shock feeling in my muscles a couple times and a 10 second wave of the arousal/itching which was quite strong (but that was after I put pressure on it cos I wanted the vibration to stop). I'm just worried because I can't tell what's caused by my period, Citolapram, anxiety or just if it's normal for pgad. I actually woke up a few hours ago and I'm starting to feel the vibration again. :/

And another question (sorry!) did you feel yours was a lot better in the morning compared to later on in the day?

 

Thank you so much again and best wishes to you too :)

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Shep

I woke up a few hours ago and I have completely no PGAD at all O.o can reinstating happen that quickly?? Then again it's still morning but this is the most normal I've felt in forever! No tingling or twitching and I don't have that weakness feeling I've had 24/7 since I got PGAD. I actually slept good again and I even have a headache just like I used to on Citolapram! Ive never felt so hopeful about a headache before lol! I'll update if anything changes, knowing my luck it probably will lol I'm going to be on my period any day now too I'm not sure if that is just helping it somehow. I hope so much that it's just gone for good!

 

 

Yes, actually, reinstating CAN happen that quickly. In fact, the fact that you got such a good result so quickly means your symptoms are most likely withdrawal, as reintroducing the drug took care of the problem. That speaks to withdrawal as opposed to some other problem.  There will most likely still be windows and waves, including fluctuations with your cycle, but if you are feeling "overall" better, than the reinstatement is working. 

 

Please update your signature to reflect your reinstatement dose.

 

I'm glad to hear you're feeling better. 

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Shep

Rbvdk, many members report good results with fish oil and magnesium, as it has a calming effect on the CNS.

 

Please research any and all supplements, and only add in one at a time. These links give more information:

 

King of supplements: Omega-3 fatty acids (fish oil)

 

Magnesium, nature's calcium channel blocker

 

You may want to wait until you've given the reinstatement at least a week before adding them in, though, as making too many changes at once can be confusing to the CNS. 

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Rbvdk

Hi Shep, yeah I had no symptoms at all yesterday and felt completely normal it was amazing! :P I'm glad it was just withdrawals and nothing else then, since it's probably the easiest to treat. :) I'll change my signature now thanks for reminding me!

 

And thank you for that info, I'll be sure to try those. I did hear that omega-3 was good so I actually started eating fish every day just as I started getting better, must have helped a lot. I did stop 2 days ago though because too much fish makes me feel sick lol but I still feel great. I'll try the pill forms in a week. :)

 

Thanks again for everything and I'll be sure to update any changes. I hope (if I am better) I can give hope to others, it really does help recovery a lot to see there's hope. :)

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JanCarol

Hey Rbvdk - 

 

"PGAD" can be a long term condition - or it can be a phase of symptoms during withdrawal.  We can hope that your situation is the latter.  Not thinking about the elephant in the room is the best way to heal - if you can distract away from the discomfort and give it time to heal, without attaching too many "diagnosis words" or scenarios of doom and gloom to it.  The more you emotionally attach to it - with fear or pressure - the harder it will be to heal.

 

I have heard good things about pelvic floor physical therapy, which may help with your other conditions, too.  I don't know what it involves, but if you can get it on your insurance, I highly recommend it.  It has helped people more than any drug treatment. 

 

Nerve zaps and firing and weird muscular stuff are all part of withdrawal on these drugs.  In women especially, there is a nerve which runs from the brain all the way down to the genitals, and through many of the organs in between - called the Vagus Nerve.   You may be helped by some of the information, here:  http://survivingantidepressants.org/index.php?/topic/3173-vagus-nerve-stimulation/

 

Are you sure going back on them will work after so long? I was hoping to go to a pelvic floor specialist before deciding so I'd know for sure if it was from antidepressants and not another physical reason. Only problem is it'll take atleast a month to see one. :/

 

Is this uncomfortable pelvic / genital thing your primary symptom?

 

Reinstatements work best before 3 months off.  It's not about how much chemical is in your body, but how the drug has restructured your nervous system while you were on it.  We have had successful reinstatements up to a year out.  Additionally, your symptoms may shift and change for a long time, as different systems repair and re-calibrate from what the drug did to you.  Some people like to think of this as solving a Rubik's cube - sometimes you go backwards in order to go forwards:

 

Healing from Antidepressants - Patterns of Recovery (by Toxic Antidepressants)

 

The pelvic floor specialist sounds good - especially if s/he has physiotherapists working with him/her.  Let us know what s/he comes up with! 

 

 I have no arousal/itching except for like 2 second flare ups whenever I start over-thinking about it. 

 

I believe that this is a key insight into your condition.

 

Rumination is the lock-down that gets us into these messes.  It almost doesn't matter what the diagnosis is - depression, anxiety, OCD, whatever (I'm not big on "diagnosis words") - it's ruminating that drives the thoughts in deep - deeply enough to cause physical reactions or emotional mires.

 

I've learned that the key to rumination is mindfulness.  There's a ton of information on mindfulness, it's become the popular psycho-technique du jour.  The one that got me started was "The Mindful Way through Depression" by Mark Williams.  There is a lot of stuff by Jon Kabat-Zinn, as well.  Basically mindfulness is bringing you right to the now, and not judging your state, just observing it.

 

As you get good at it (it's best to learn it when you are in a better place, it's hard to learn when you are in crisis), you will find that you are able to detach from your experience:  I am not my thoughts, I am not my feelings, and even, I am not my body!  Thoughts, feelings, body, these are experiences that you go through, but they are not you.

 

Here's more on Mindfulness, and a favourite meditation:

Mindfulness and Acceptance

Ten Minute Body Scan

and look!  I found where I wrote a lot more about Mindfulness, on another thread:

JanCarol Rumination and Mindfulness

 

You may also benefit from our OCD and Health Anxiety threads:

http://survivingantidepressants.org/index.php?/topic/3882-ocd-obsessive-thoughts-compulsive-behaviors/

Health Anxiety, Hypochondria, and Obsession with Symptoms

 

Here is an example of that "sticky" form of thinking:

Now that I've gotten PGAD I'm an absolute mess,

 

You're convinced you've got this diagnosis. You are owning this diagnosis, you have it, it has you.

 

Can you think about new ways of expressing it?

 

How about, instead of calling it PGAD (you haven't been diagnosed, you have self-diagnosed) you call it Temporary Uncomfortable Genitals?  TUG.

 

And how about instead of saying you have it, you talk about experiencing it?

 

"I am experiencing Temporary Uncomfortable Genitals" sounds far less threatening than what you said.

 

and this:

 because I know if I always have this PGAD I can never be like that again.

 

Is catastrophizing.  Worrying about things that haven't happened yet.  

 

"We often suffer more in our imagination, than we do in reality."  -Seneca 

 

I woke up a few hours ago and I have completely no PGAD at all O.o can reinstating happen that quickly?? Then again it's still morning but this is the most normal I've felt in forever! No tingling or twitching and I don't have that weakness feeling I've had 24/7 since I got PGAD. I actually slept good again and I even have a headache just like I used to on Citolapram! Ive never felt so hopeful about a headache before lol! I'll update if anything changes, knowing my luck it probably will lol I'm going to be on my period any day now too I'm not sure if that is just helping it somehow. I hope so much that it's just gone for good! 

 

Welcome to a Window!   Now you know that you can heal, right?  You are healing!

 

So when those obsessive, sticky, ruminating thoughts come again - remember - you are healing, you can get better!

 

Just remember that healing is not linear, it happens in fits and starts, and you are very likely to get Waves, too.  When you are in a Wave (a difficult time) - you know you are healing, because something is offline and you are having symptoms - but in a WIndow, you know you are healing because you feel so much better!

 

Here's a link:  Waves and Windows

 

Please do not consider any further tapers for at least one month, preferably 3 months.

 

You can use this waiting time to learn:

  • Mindfulness - so that you can realize when you've jumped onto the squirrel-wheel of rumination again, and can learn to walk away from it.
  • Liquid tapering techniques - at your low dose, even cutting 1/4 tablet may not be accurate enough, and you will want to convert over to liquid as soon as possible so that you can take exactly the same dose at the same time every day - to stay stable as you taper.

and you know that you can heal, you are healing, and it does get better!

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Rbvdk

Hey Jan! Thank you so so much! I came back here because I started feeling the itching again only much worse (still in spikes but stronger and longer than ever), I was about to have a meltdown but reading your post helped SO much!

 

You're so right, your thinking is such a powerful thing and I shouldn't use it against myself by saying I HAVE this condition. TUG sounds better, it's hopeful and if my brain believes it's temporary then there's more chance of it actually being temporary. Same with the "experiencing" rather than "I have".

 

I'm going to read all your links now thank you! :) And yeah the arousal/itching is the worst and most persistent symptom. I think I'm actually healing from the exercise bike injury because I don't feel much pain anymore (the pain and itching come at different times so I'm not sure if they're even related).

 

I'm wondering though, is it possible this wave is actually just the Citolapram making it worse? Like, what if it's only just started to take effect? The day I felt better was my heaviest period day so what if that's the only reason I was better? I'm still only getting spikes but they're so much more intense and longer than ever. Also there's always something in that area throbbing, mostly my clit I think.

 

I'll try the liquid form and the mindfulness. I'm seeing a specialist in January, my doctor didn't refer me to a pelvic specialist though, I think it's a urologist? I'm not 100% sure. I'll definitely update once I've been.

 

Again thank you so so much for all this and for all your time writing this, you're so thoughtful. :) I'm going to try all your suggestions.

Take care! :)

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Rbvdk

Just remembered it's a gyologist.

Also, still feel like I'm getting worse :(

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Rbvdk

Sorry for keep posting but I need help. I'm definitely getting much worse! I'm starting to feel it 24/7 again only with even worse waves that last for almost a minute each, they're so strong. It's worse than I felt right at the start and I'm starting to really think Citolapram is making it worse. I should have never taken it but now I'm stuck because coming off them again will make it worse too right?

 

Also my doctors and family are urging me to take the 10mg (because apparently you don't get the benefits any lower - just side effects) but that could just make it even worse! I feel so alone in this and I'm so scared!

 

I really need help, should I have taken Citolapram again? Should I up it? Should I come off it? I used to not feel it in the mornings but now it's there as soon as I wake up. Please someone help I'm so desperate for answers and the other day I broke down so bad at my DRs I almost got hospitalised. :( I'm trying everything so hard to deal with this but it's hard when the symptoms are only getting worse. How can they feel worse than I've ever had if I'm supposed to be healing? :(

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Shep

Hi, Rbvdk.

 

I've asked the other mods to weigh in about stopping the reinstatement. It's been 6 days and it may be that the reinstatement dose was too high or it may be that you're better off without it.

 

Are you worse overall now than before you reinstated? Do you have other symptoms that changed? How is your sleep? 

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