Hello - SSRI withdrawal

[Rane]

Hey everyone! I have had PGAD for a little over a month since I went off of an antidepressant (celexa) too fast. I'm glad that there is a support group for this, the antidepressant withdrawal forum I'm also on doesn't have much experience with this.

Anyway, I believe it started with leg pain. There were pins and needles which, over the course of a few days, began to affect my my left labia with a piercing pain. I thought at first it was only a leg problem, but then I began to feel like my bladder was always full, and I felt aroused for no reason. After a few days I began to have stabbing, intense orgasms. I looked it up and found out that I had PGAD and that it was possible to have this after getting off an SSRI. As soon as it came, it disappeared for a long time. Kinda embarrassing here, but I need to say this. Anytime afterwards when I "touched myself" my left leg would hurt for at least 2 to 3 days later, but my genitals would settle down no problem. I was concerned about this, and tried to stop doing it, but well...

Around late June or early July I stupidly gave into the urge. My legs hurt as usual. A little later I got my period. A little after my period, around July 11th, I began to feel like I was still having menstrual cramps even though I was done. I thought I was having another yeast infection, but even after taking Monostat, it persisted.
Then, on the 24th of July, my PGAD suddenly came back. I suddenly understood where the cramping was coming from. I am now having a tingling sensation in my labia or colitis, I can't tell really. It comes and goes when it wants to. Occasionally a very shallow orgasam will occur, worse at night and usually when I'm on my left side. I tried to suppress it and it does work a little, but I need to be concentrating on it in order to stop it, and that means no sleep. I've also noticed I'm a lot more, er, gassy, but I do wonder if sometimes the air is not coming from my butt, if you know what I mean. It feels different.

I have some clonazepam my GP gave me for when he thought I was having restless leg syndrome. It does help a lot, but I do not want to become dependent on it. I don't want to be dependent on any meds, the reason why I got off of Celexa in the first place. So that's one problem.
I'm afraid I'll have to get back on it forever. I feel so stupid, tapering off too quickly has possibly left me with a life long condition. I fear that nothing short of that or undergoing an implant will help. I really don't want to get back on meds.

I went to my OBGYN yesterday and told him everything. He was very confused and, after testing me for a UTI and vaginal infections (all negative) and also having me go through an ultrasound that didn't find anything, referred me to a medical university doctor who specializes in Vulvodynia (why don't OBGYNs know about this?!). I don't know if that will help at all. I do have an appointment with a neurologist in August. Do any of you know if they can pinpoint the site of occurrence?

So yeah, I thought my PGAD had gone, but no, it came back. I do know of one person who got off of an SSRI, had PGAD for four months before it went away and is fine now. I really hope that is my case. I feel guilty because my family (I live with them) has to put up with my stupid decision now.

I did have one yeast infection btw, and this was in early July.
Oh dang, almost forgot, I did fall on my back in late June and had severe back pain while sitting at work (I know sitting is bad for this thing), but this all stared almost immediately after my SSRI withdrawal. My GP had an xray done of my spine which showed nothing was wrong.

[Violet M]

Hi Rane,

Welcome to the forum. I have heard of other women who felt like their PGAD was due to going of an SSRI and I hope your symptoms will be temporary. You do mention some symptoms that are similar to what I experienced when PNE started -- feeling like you had a yeast infection, piercing pain, etc. It might be worth it to try to get an evaluation by a pelvic floor specialist, preferrably one who is trained in treating people with pudendal neuralgia to get some additional info on whether you have pelvic floor tension or any tenderness along the course of the pudendal nerve. They could also check your pelvic alignment which could be important based on your history of a hard fall.

Meds really are an individual decision. I found lexapro, another SSRI somewhat effective at dampening the PGAD and bladder symptoms. When I went off of it, I tapered very slowly over the course of a year and I'm fine now with no PGAD. I found clonazepam to be a lifesaver in allowing me to get a few hour's of sleep. I am completely off of it too with no PGAD. So I don't think you have to think of the medications as permanent but just something you use sparingly temporarily until you figure out the root cause of the problem. Ice gel packs might help you with sleep and can help reduce the use of medications. Have you tried lyrica or gabapentin?

Good luck. I hope you can get this sorted out.

Violet

[Rane]

I haven't tried either of those meds yet. All the doctors I went to so far have no idea what's going on. Being in the Midwest in not a good place to have this problem. I'll see what the neurologist says, and maybe the university doctors will have some familiarity with this. Thanks for responding!

[DoubleEdgedSword]

Hi Rane,

I hope you can find something that will work for you. Since you don't want the meds, have you tried ice yet for your PGAD & pain? I keep a slushy condom in the freezer, & also a water bottle with a bit of rubbing alcohol in it, the rest water, so it doesn't freeze solid.. Works well for me, 20 mins on, 20 mins off whenever needed..

Also, have you tried magnesium supplements for your restless legs? It took awhile for me to get the dosage I needed, but I started at 50 mg, then awhile later up to 100 mg, 150 mg, etc.. I take 500 mg daily now, a couple of hours before bedtime, & while it did take awhile to work, now I'm rarely bothered by RLS anymore..

I've heard of people coming off SSRIs getting PGAD, but that wasn't the case with me. I'm sure while there may be other contributing factors to mine, STRESS plays a big role in my PGAD.. Whenever I have a stressful event like a dental appointment or a few crazy days at work, mine spikes.. I've had it over 3 years now, but it's at a very manageable level for me over all.

I hope that you'll be able to get some help here and from your doctors. I wish more docs knew about this..

[Rane]

Hi DoubleEdgedSword. That's interesting that you say stress triggers yours. I think that a combination of me "touching myself" and stress is aggravating mine. I'm going to the acupuncturist today and see if that helps a bit.

[Rane]

So I went today...Not much difference, except that the left side of my pelvis has been hurting. She said it would take a few sessions for it to work completely and that it might get worse before it gets better.

I've been having pretty bad trouble with my intestines though. I feel gassy and there's just very loose stool on the verge of diarrhea.

[Violet M]

Hi Rane,

Lots of people with PN have reported they have irritable bowel syndrome. I have no idea if what you are describing is related though.

Hope your future acupuncture appointments are helpful.

Violet

[flash gordon]

Rane,

There is a great group for people having problems with ssri's and benzos. The sight is called benzo buddies. I became dependent on klonopin overnight when I had a bad reaction to corticosteroids. This group helped me through the mess. It took 14 months for my mind to calm down. What a crazy road trying to find a cure for penile allydonia. It almost ruined my life.

fg

[Samanthacr51989]

Hello, my name is Samantha. I also experienced symptoms of PGAD when i stopped taking my anti-depressant. Which is Remeron, but i take the generic brand which is Mirtazapine 15MG. The symptom i have is with my Clitoris. Its throbbing. Its been throbbing for about 6 months now. I sense then gotten back on the medication to see if it would give me some relief and hasn't. I have read that the medication i'm on can cause sexual dysfunctions and can lead to hypersensitivity. I'm going to see a pelvic floor therapist on thursday. Can anyone help, or shed some light please.

[Violet M]

Hi Samantha,

There is a lot that is unknown about SSRI's and exactly how they work.
http://www.webmd.com/depression/how-dif ... sants-work

When PGAD occurs as a result of SSRI withdrawal it's hard to say whether it's an imbalance or neurotransmitters in the brain that causes it or a problem that occurs in the peripheral nerves such as the pudendal nerve that innervates the clitoris -- or a combination of problems in both areas. So it is very difficult to determine what areas to treat and it can be a matter of trial and error to find out what works for you. There are so many options of things to try it's a bit of a maze out there. Hopefully your PT was able to give you some clues.

Are there any other factors in your history or clinical exam that could provide clues as to whether this could be pudendal nerve related? --- such as history of exercise, tense pelvic floor muscles, pain anywhere, problems with urination?

Violet