PGAD - persistent genital arousal disorder.Please help me

[cathyatlantic]

Dear all,

I took the antidepressant Sertraline 50g for only one month in May 2017. I had very bad side effects while on the drug and I developped high pitched tinnitus . I brought the antidepressant down after 2 weeks from the 50 g dose to the 25g dose. I got a lot of withdrawal symptoms and my tinnitus got worse (before taking Sertraline, I had been on different benzodiazepines for only 4 months, I have never taken any antidepressants or benzos before january 2017. I am 50 and started the menopause in september 2016. I started xanax after a domestic accident in december.

When I was tappering down Sertraline, I started experiencing a very distressing withdrawal side effect : a tingling feeling in my clitoris, vaginal lubrifications and contractions, throbbing, pressure on the clitoris, a feeling that there was urine trapped in my urethra and on my genitals and vaginal congestion. I also started experiencing genital arousal in my car. Few days later I started to have an hyperactive bladder (obliged to go to the bathroom every 10 minutes) and a very dull pain in my lower abdomen, and pelvic area. It really looked like a bacterial cystitis and my GP treated me for cystitis. When the doctor found out my urine was clear but that I had a lot of leukocytes in my bladder, she told me it could be interstitial cystitis and sent me to a urologist. In the meantime I went to my gynecologist who checked my hormones and told me it could be related to the antidepressant and to stop them. I was put on the psychotrope Risperidone and on a tricyclic antidepressant Anafranil. I had vertigo and my tinnitus got worse so I was put back on xanax and on zopiclone to sleep at night. My arousal is getting worse. I had a cystoscopy done and my urologist confirmed it wasn't an interstitial cystitis. I found out on the web that a lot of women had developped the same symptoms as mine while stopping an antidepresssant.
My urologist and gynecologist agreed I might have PGAD and they are sending me for a urodynanamic test and a pelvian MRI. I had a brain MRI. They told me it could be neurological.
I am French and I live in the west of France so I took an appointment with the Nantes specialists on Pudendal Nerve. I will see them in October.

I am feeling desperate and wondering if I have PGAD and Pudendal Neuralgia. Would somebody on this site would know if my symptoms could be linked to the symptoms of Pudendal Neuralgia ? Do you think I have PGAD ? Do you think my symptoms belong to the Pudendal Neuralgia symptoms ?

I don't have pain on the areas innervated by the pudendal nerve but I have an hyperactive bladder, pain in my lower abdomen, genital arousal that gets worse when I sit,erection of the clitoris, swelling of the vagina, lubrification, tinglings on my arms,legs and lower back, pain in my lower spine, burning sensation on the clitoris and pain and burns on the urethra . I am constipated. The arousal is constant and It is getting worse. My bladder hurts terribly and I can't walk and i have to lie down with a pack of ice on my lower parts. I am desperate and can't look after my family anymore. I also greatly suffer from tinnitus and I take 3 xanax a day and a zoplicone tablet at night to bear my tinnitus.

My gynecologist wants to put me on hormone replacement therapy but I am terrified that it will make the PGAD worse. My urologist wants me to take Lyrica and Betmiga. I am terrified of taking Lyrica because i fear it will make my tinnitus worse. Do you know if Lyrica has tinnitus as a side effect ? I tried an anticyclic antidepressant but it made the buzzing worse so I am scared of taking an antidepressant such as Anafranil.

I thank all of you who will read my story. I appreciate your support and your advise.

Thank you for this site that gave me hope and showed me I was not delusionnal.

Thanks a lot
cathyatlantic

[Violet M]

Hi Cathy,

Sounds like you are really struggling right now. I'm sorry things are so rough for you.

The criteria for whether you have PGAD are generally agreed to include the following:

1. Involuntary genital arousal that persist for hours, days, or months.
2. The arousal does not go away after one or more orgasms.
3. The arousal is intrusive and unwanted.
4. The arousal can be triggered by nonsexual stimuli unrelated to sexual excitement
or desire.
5. The cause cannot be identified.

(See my article at the following link: http://www.pudendalhope.info/sites/defa ... ne2013.pdf)

Personally, I don't agree with #5 because I think there are times when the cause can be identified -- at least for me it was eventually identified and I know other women who knew the cause for them.

I can't say for sure if you have pudendal neuralgia but you certainly have many of the same symptoms I had with pudendal neuralgia. The pudendal nerve innervates the bladder sphincter which could explain your frequency of urination. I had the same problem. But it sounds to me like your nervous system is very wound up right now since you are having many peripheral nerve issues, not just pelvic symptoms. It also sounds like you had a stressful experience before all of this happened. Since PGAD is considered by some doctors to be a pain syndrome rather than a psychological issue it might be helpful for you to try some pain medication to calm down the central nervous system. I know one women who is able to get rid of her PGAD symptoms using suboxone which is an opioid that also contains naloxone. I don't know if your doctors would be trained or be willing to prescribe it though. But you could try a milder opioid temporarily to see if it helps until you can find the cause of your symptoms and get the proper treatment. You might also want to research the mindbody approach as described by Ezer previously on this forum.

Have your doctors done blood tests to determine if you have any deficiencies that could be contributing to damaged nerves or whether your might have something like lyme's disease?

I'm assuming your MRI's were normal?

While you are waiting for your appointment in October you might want to research to see if there are any pelvic floor physiotherapists near you who treat women with chronic pelvic pain. They could assess you to see if your pelvic floor is overly tense.

Ringing in the ears is listed as one of the rare side effects of lyrica. http://www.webmd.com/drugs/2/drug-93965 ... ideeffects

Keep searching for answers and keep your courage up. You will eventually find the right treatments for you.

Violet

[cathyatlantic]

Hi Violet,

Thank you very much for your kind words and for taking the time to reply to my query.

I hope you don't mind me asking you. Did you have other symptoms than PGAD when you were diagnosed with Pudental Nerve entrapment ? I only have the PGAD and hyper active and sore bladder symptoms with a bad pain on my lower back and I started having the symptoms when I brought down my Sertraline antidepressant. So I don't think it is a nerve entrapment. I had a cystoscopy done and my urologist told me it isn't interstitial cystics either. My gynecologist told me it is a peripheral neuropathy.

My gynecologist wants me to try hormone replacement therapy as I am menopausal. Do you know if women who are menauposal and suffering from PGAD on this forum have used it it and got some relief.

I am scared of taking Lyrica, the medication you are mentionning is not available in France. I am trying tramadol for the first time today. Is this medication working on PGAD ? Do you know if it increases tinnitus ?

Are there any women on this forum that use medications against hyperactive bladder. My urologist gave me one to try, a new one called Betmiga I haven't tried it yet because I tried another one before that increased my tinnitus.
.
If I understand correctly your story, I think you hadyour surgery in France, in Nantes. I took an appointment with docteur Riant and docteur Rioult, Centre Catherine de Sienne Nantes. I don't think the doctor Labat and Roger are stillworking . Do you know if docteurs Riant and Rioult are any good. I found their name on the French puddental organisation site.

I hope you don't mind me asking you all these questions. This site is great because it shows me Iam not alone and that things can be done againt PGAD. It also reassuring to know that PGAD can be linked to the pudental nerve.

Thanks a lot for your great help.

Cathy

[Violet M]

Hi Cathy,

There was a time when my primary symptom was PGAD and urinary frequency but eventually I developed severe pain also. The pudendal nerve innervates the bladder sphincter and that's why pudendal neuralgia can cause urinary symptoms.

I don't remember any cases where hormone treatment alone helped PGAD. I have not heard of tramadol causing tinnitus. Here is the list of possible side effects. http://www.rxlist.com/ultram-side-effec ... center.htm
With everydrug there is going to be a list of scary side effects. That doesn't mean you will have those side effects.

Those French doctors you mentioned are very experienced but I don't know what treatments they offer. I did not go to Nantes. I went to Dr. Bautrant in Aix en Provence.

Since you also have low back pain I think it is important to have an MRI and also to be evaluated by a manual therapist or physical therapist for sacroiliac joint dysfunction. SI joint dysfunction along with chronic ligament strain was one of the major causes of my PNE/PGAD.

Violet

[cathyatlantic]

Hello Violet,

Thanks a lot for your reply. I am desperate because my PGAD symptoms are getting worse and so is my tinnitus.

Are there some ladies on this forum who got PGAD from coming off an antidepressant ? Did the PGAD eventually go away ? In this case would they know if it is a withdrawal symptom that goes aways eventually. I was hoping that eventually my PGAD will go away because it was caused by an antidepressant but it seems to get worse and worse and I have been off Sertraline for 2 months. I hope some ladies on this forum, can reassure me because I am feeling very low.

I took tramadol and put Lidocaine on my private parts yesterday. It quieted down the symptoms but my tinnitus got worse today so I don't know if it is related. I am in a very dark place because I don' t get any relief from PGAD or from tinnitus and the drugs who could help me with PGAD makes my tinnitus worse (my tinnitus is recent also and linked with a too fast tappering of the benzos I took at the beginning of the year. Igot it at the same time as PGAD with the Sertraline withdrawal)

I am booked for 2 pelvic and back MRIs in september then I will know if it is a nerve entrapment but I don't know how a urologist can diagnose that it is a pudendal neuralgia with these MRIs. How do women with PGAD that is not linked with nerve entrapment manage ?


Thanks a lot for your great help. I am suffering greatly with PGAD and tinnitus and I feel very lost.


Thank you for your kindness

Cathy

IPS haven't used the Hormonal replacement therapy yet. I fear it might make things worse. I havent tried the Lyrica yet. Do people on this site use it ?

I have an appointment with he Nantes doctors. Sorry I thought you went to them. I think they have a great reputation but Iam going to check with the French pudendal support site and give youan update on them.

[Violet M]

I've known people who used lyrica and it helps some people. You just don't know unless you try it because each person is different.

I think you said you got PGAD when you were taking the antidepressant, not when you quit taking it, right? I don't think I have heard of taking antidepressants causing PGAD. Some people say they get PGAD from quitting antidepressants. I don't think anyone has ever given proof that the antidepressants are the primary cause. There is no literature that I know of that proves PGAD is caused by antidepressant withdrawal. Some doctors feel it is related to nerve damage because some people who never took antidepressants get it. It's possible the antidepressant is related to the triggering of PGAD but possibly not the primary cause. I don't think anyone knows for sure. So it can't hurt to try some therapies like physiotherapy to see if it will help.

MRI's are not going to give you a definite accurate diagnosis for nerve entrapment but it might show some valuable information so it's good to have it done. But if it comes back normal, that doesn't prove whether or not you have something like sacroiliac joint dysfunction or some other musculoskeletal problems that wouldn't show up on an MRI. That's why it can be important to have an evaluation by a PT who specializes in the pelvis.

Sorry, I haven't studied into tinnitus much so I don't know what treatments might help with that. I hope you will find something that gives you relief.

You can try some topical things like ice, lidocaine ointments, or capsaicin if you can't tolerate the drugs.

Violet

[sadie]

Cathy
OK my friend, prop up your feet this is long.....I see you are in France , and have to say your English is amazing.

I am so sorry you are dealing with this. I have PGAD but thanks to the forum and caring doctors and TIME I am "better" then I was. So i know you will find help, especially because you are getting posts from Violet. She saved my life by sharing her story with me so I did not feel I was alone. I wanted to weigh in to the theory , that antidepressants cause PGAD after coming off the drug, as i noticed you brought up antidepressants .

I am not a doctor so I can not say that it is not possible, but here is what could be happening ....

“If a woman is on an antidepressant, and while on the antidepressant for say 'situational depression" or to stop pain (burning or static etc.), and then she injures the pudendal nerve or further injures an already damaged PN, PGAD may develop. However, because she is an antidepressant, she may be unaware of the PGAD (because the antidepressants are blocking the PGAD signals to her brain). Then when she comes off the antidepressants, because she no longer feels depressed and her situation has changed, she than feels for the first time the (PGAD) signals that were being masked by the medications and thinks that the cause of her PGAD is because she has stopped the medication. Likewise, many patients on Lyrica feel this medication causes weight gain and it may be true. However when I spoke with several pharmacist to see if there were any ingredients in Lyrica to cause weigh gain, the answer was 'none". So the coloration between weigh gain and Lyrica may be the fact that , most patients on Lyrica are taking it for pain and those of us in pain do not exercise as we did before taking the medication, which is the cause of the weight gain. So many times it may look like a drug is causing a side effect when it is not.”

i know first hand that these antidepressant can mask horrible symptoms. I was on amitriptyline 70mg for years to stop acid like burning and electrical shocks in my vagina from going to my brain. (I did not have PGAD back then, my PGAD was cause much later in 2010 from pudendal nerve blocks, trying to fix the burning symptom) . The amitriptyline worked well enough for me, to be able to work 6 days a week, but I could not sit for very long or the burning would start.

I am not advising you to take this drug because it is an old drug and because I was older 52 (older patients need to be careful on these older drugs) it eventually cause sever dystonia. What I am saying is , that women who think that discontinuing antidepressant is the cause of the PGAD, may want to consider this aforementioned theory. Maybe they injured the nerve while on the antidepressants.

FYI I take Lyrica and Lexapro (both make me forgetful and disconnected)

Cathy I am sending this post with hugs and prayers for help and healing
Sadie

[Violet M]

Hey, dear Sadie. You described the theory very well. Saying some prayers for your continued healing -- and for everyone with PGAD.

Violet

[cathyatlantic]

Hi Violet and Sadie,

Thank you so much for your kind words. I must say I am not doing well. I tried Tramadol and Lidocaine but my tinnitus got worse so I don't know if it is linked. My PGAD is very bad and I have very bad hyperactive bladder. I think tinnitus and PGAD are linked with my antidepressant withdrawal.

I think my PGAD was caused by Sertraline withdrawal. I had been on it for 2 weeks only and I got a lot of side effects, it appeared when I brought it down to a smaller dose to tapper it down that the PGAD started. It was the last of many withdrawal symptoms. Tinnitus and PGAD appeared at the same time when I was tappering the drug down and I only been on it for 4 weeks at the time. I saw on sites dedicated to antidepressants withdrawal that a lot of people got PGAD when they have just started or when they were tappering down a drug that they have just started. So I really think it is linked in my case with Sertraline withdrawal.

As soon as I started Sertraline, I started having tremors, pins and needles on my legs, back and and very bad back pain. I still have this every day. Do you get these symptoms ? I can barely walk and I am shaking all the time (I take Xanax so I think it make me feling very bad)

When I was tappering down Sertraline, the PGAD started with vaginal lubrification followed by constant urination followed by pain in the bladder, hyperactive bladdder then constant arousal. My PGAD has been following the same pattern since and it is not stopping while I have been off the drug for 2 months.

My gynecologist thinks that Sertraline is an antidepressant that can mess up with hormones (that's why she wants me to have Hormonal replacement therapy.) Sadie, do you have hormonal therapy for the menopause ?

Do you use médications for hyperactive bladder ?

Sadie, do you mind me asking you how did you get your PGAD ? Are you ok on your antidepressant ? How are you coping ? Does it correct your PGAD symptoms ?

Ican't find aphysiotherapist in my region that can work on PGAD. They don't know it. My life is very difficult at the moment between PGAD and tinnitus, so I really appreciate your help and kindness. I am going to the pharmacy to try to get the capsaicine.

Thanks a lot for our kindness

Cathy

[Violet M]

Cathy, you could try a tricyclic anitdepressant for the bladder and PGAD symptoms. To my knowledge, the tricyclics are not associated with causing PGAD and they often help bladder symptoms. You could try a very low dose to start with, maybe.

Or another possiblity is buprenorphine which is a partial agonist opioid. It is not like regular opioids and it may help your PGAD. I know one woman who takes it for PGAD and it help significantly. Since it is a partial agonist you are not likely to develop a tolerance to it is my understanding.

Violet