PGAD - persistent genital arousal disorder.Please help me

[cathyatlantic]

Hi Violet,

Thank you so much for your support. I tried anafranil with my psychiatrist at the lowest dose but it made my tinnitus worse so I stopped it. My tinitus is a big probem because it spikes any time I am trying a drug.

I saw there are 2 other tricyclics, laroxyl and nortryptiline. I wonder if they have less side effects and could be ok. I saw there is cymbalta also that can help with PGAD but I fear that it makes my tinnitus worse, I read that it has a lot of side effects. It is like my brain cannot accept any medications since It was wounded by the Sertraline and xanax withdrawals.

My gynecologist really thinks I should try the hormonal replacement therapy. She believes it could help but I am wondering if it wouldn't make things worse.The estrogens could make the PGAD to flare up so I don't know if I should try it. Idon't know if somebody tried it on this forum.

I am going to see my GP to see if I can get the drug you are suggesting.

I hope I am not to much of a pain in the neck with my tinnitus etc but I am terribly sensitive to medication and I tend to have very bad reaction when I take one. What do you think of the antiepileptics others than Lyrica such as Lactimal, Tegretol etc ?

Thanks a lot for your support and kindness

Cathy

[Violet M]

Hi Cathy,

I wish I could predict how the drugs are going to affect you but since everyone has different genetics it's hard to say how your body chemistry will react to a particular drug. You just don't know until you try it, unfortunately.

I don't remember if I have ever heard of anyone being helped by hormone replacement therapy (HRT). You could try doing a search on the word "hormone" in the search bar and see if any former posts come up regarding HRT.

Violet

[sadie]

Cathy

I am sorry I am just getting back to you and sending this with a big hug...Yes the antidepressants stopped the electrical shocks and burning early on before the PGAD, but it is an old antidepressant and I was older too, and the two did not mix so well . After taking it for four years and being able to go to work ( but not sit for very long)..it slowly started causing dystonia until in 2010 the dystonia exploded . I tapered off slowly and my burning and shocks returned.

Amitriptyline is a tricyclic antidepressant (TCA) with a slightly lower tolerability then selective serotonin reuptake inhibitors (SSRI) like the one i am on now, but both are antidepressants.

I am now on an SSRI called Lexapro, but I am on the generic (cheaper) form of it called Escitalopram. It really helps the PGAD. I think that was your question.

I also take Lyrica, it is an anti-epileptic drug also called an anticonvulsant,and slows down the impulses to the brain...and also affects chemicals in the brain that send pain signals across the brain.

I should have just been switched to Lexapro after the Amitriptyline stopped working, and explained that it was a newer version of the drug and less likely to cause dystonia but I never was ....instead I had two pudendal nerve blocks with depo medrol and each caused PGAD .

The first time pgad came was after the first pudendal nerve block. I was on Valium and was so weak I could not walk or speak because of the drug, so I though in my altered state of mind, that the PGAD feeling was part of the Valium side effects, (once again, I was on the Valium for the dystonia ticks ) . I had also tried testosterone the night before the feelings came, and was afraid that had caused it ....


It was hard to figure out anything at that point while having a sever reaction to Valium. I did not even know that I was so sick because of the Valium, because the doctors kept me on it saying "it cant be the Valium you are only on 5mg"[/i] But as quick as the PGAD came it went (maybe a few hours) and I just wrote it off and continued to try to survive the reaction to the Valium, because it had made me so extremely nauseous I was down to 103 for 115.


You asked "do you have hormonal therapy for the menopause?" I never mentioned menopause...but I did try progesterone and estrogen bio identicals. The progestin was taken with out incident , but the estrogen was like adding a match to gasoline.

You asked how I am coping ...I believe in God and doing your research and being your best adcocate and surounding yourself with quality friends and family. You are doing your part by reackin gout on the forum and that is kind of where I started.

You asked about over active batter ....ugggg...I had dodged that bullet my entire life because i did not have any children, and when my friends that had children would sneeze and pee I thought .. that will never be me . I was 52 and athletic and did not smoke or do drugs etc...and thought running to pee was not in the cards . Since having two pudendal nerve surgeries and PGAD etc I now have urgency and frequency..but do not have to wear anything for it, or take anything for it. I stay close to the ladies room lol

Hope that helped ...

where do you live?


God bless my heart goes out to you ...Sadie

[sadie]

Cathy
I forgot to tell you that I use 10% compounded lidocaine cream. I do not know if you have access to compounded medications and this one especially is hard to find. My pharmacist came up with this amazing cream and he said the formula is proprietary, and i might add ....expensive. So you may want to see if you can find a pharmacist to see if the have an equivalent. It helps with the burning and itching much more then the PGAD, but it tones it down a bit. The best free help is sm frozen ice bottles covered by a soft ankle footie, to keep it from burning. i have to sleep with one almost every night.

Hang in there, you will find answers and solutions, I just know it!!

[cathyatlantic]

Hi Sadie,

Thanks a lot for your help and for answering my questions. i am very tired and depressed at the moment. I also have very bad tinitus since I withdrew from Sertraline (I was on it for only 2 weeks when I got bad side effects and it is during withdrawal that PGAD appeared alongside to Tinnitus ) I also had stopped Xanax cold turkey and this can explain the tinnitus. I am back on Xanax, i think it helps with tinnitus but not with PGAD.

I really think my PGAD was caused by the Sertraline withdrawal. I have never taken an antidepressant and I have just started it when I got tremors and agitations and I got PGAD when I was tappering Sertaline (I was on Sertraline for not more than a month and a half)

So my doctors don't want to put me on another SSRIs because it could cause a PGAD flare up. It is mad to think that a SSRi is helping you to control your PGAD.

Your story made me sad. I can't believe it. Chirurgy for PN gave you PGAD while you already had PN. Did the doctors apologise ? How could this happen ? How did you cope mentally ? How could they explain this? How can you live with PGAD ? Do you have pains also ?

I really appreciate your advise. I wont take HRT. Did you stop them when your PGAD got worse. Did estrogens make the PGAD worse ?

I tried xilocaine but it doesnt stop the PGAD. I tried Anafranil but my tinnitus got worse and I am afraid to take Amithriptyline because tinnitus is a side effect. I am also very scared of Lyrica (because of the tinnitus). I tried Lidocaine. Do you have ixprim in the States ? (it is tramdol mixed with paracetamol)

What are your symptoms now ? At the moment I don't have spontaneous O only arousal when I sit. When I stand it is like my urethra has stones in it and is falling down, my blader is very painful and heavy and when I sit I start having lubrifiction in my vagina, then engorgement, then Clit arousal. It is awful. Do you also get these feelings ? How can one cope ?

DO you plan to have surgery again in France or somewhere else ? I am booked to see the French doctors from Nantes in October but they are specialised in nerve entrapment so I dont know if they can help. I live not far from Nantes in Britanny.

Thank you so much for anwsering my questions and thank you so much to Violet also to be here for us.

Cathy

[Violet M]

Cathy, since your arousal symptoms are affected by your position (standing, sitting, etc.), I think you have to consider whether there is something mechanical or structural causing your problems -- and that it's not just due to withdrawal from a drug. But that is just my speculation.

Violet

[cathyatlantic]

Hi Violet,

Thank you so for your message. I had been very bad lately suffering from a bad PGAD flare up (and my tinnitus is very loud) so I am suffering a lot. I tried lidocaine gel but it doesn't work and I am obliged to relieve my PGAD manually (can't be too graphic) otherwise I become very agitated and my swelling gets more painful. It is becoming more painfull with time because I can't O easily now. It is like a constant arousal that can't be fixed.
I am scared of trying Lyrica and neurontin because of the side effects and addiction possibilities and I would prefered not to try amythriptyline because it is considered ototoxic and I really have bad tinnitus.

Well I have always thought Sertraline started the PGAD because I really started to have the symptoms while I was withdrawing from it (I had only been 2 weeks on the drug and was bringing my dose down to 25 when it started. I have never taken an antidepressant before and It fits the description given on medical sites about PGAD induced by antidepressants).
I went on antidepressant withdrawal sites and there are a lot of women and some men also on it who got the same symptoms as mine when they were withdrawing from Zoloft but i am still not sure that PGAD follows the same patterns as other antidepressants withdrawal symptoms. I am not sure it goes with time.

I am not sure it will go with time and a lot of women on this site didn't have my painfull bladder syndrom and it is true that I found that my symptoms are very much like the ones described by people on this site. Until now I was hopping that with time PGAD will go but it doesn't seem to be the way. I am now 3 months off Sertraline and I still have PGAD. SO I don't know if I should try Lyrica and accept that PGAD won't stop naturally.

May I ask you what were your symptoms ? and what did you try before surgery ? How did you know you needed surgery ? What type of exams did you get to get the pudental neuralgia diagnostic done?
I am in contact with the Nantes team and the Paris team. The Nantes team wants to give me infiltrations straight away in October but I am not yet diagnosed with pudendal neuralgia and the doctor in Nantes that gives the diagnostic can't see me before march next year. The Paris team (doctor Amarenco from the Teunon hospital in Paris) can see me in November.

So I don't know what to think. Do I consider PGAD as a withdrawal symptom from antidepressant and I just wait for it to go away without medication or do i consider it as a medical condition that won't go away with time and I try Lyrica or Neurontin ?

I hope I am not too anoying with all my questions but I am very stressed and I am suffering from antidepressants discontinuation syndrome. I am also taking Xanax and zopiclone to help but I found that they make me even more depressed.

Thanks a lot for listenning and thank you so much for your great help,

Cathy

[April]

Hi Cathy,

I am so sorry to hear about your pgad and other problems. It sounds very difficult. I have pn (though not pgad) and have had an overactive bladder, so I wanted to just list a few drug options for that. I started with samples (from my doctor) of Vesicare (10 mg), and it worked great (my bladder frequency became normal). But, my insurance wouldn't cover it until I'd tried two similar but less expensive drugs, so I am just now finishing a month on tolterodine tartrate extended-release (4mg), and that also works great. It might not be quite as effective as the Vesicare, but the difference is very small. In a few days I will start the second alternative, and it is oxybutunin extended-release (10 mg). So, if the overactive bladder is still a problem, you could request one of these.

April

[Violet M]

Hi Cathy,

My symptoms started out as mild pain on one side of the vagina -- like a toothache. With some PT that pain went away but while I was doing the PT exercises, I developed PGAD with no pain for a couple of months. Then I developed itching/burning vaginal pain that I thought was a yeast infection but it wasn't. I also developed urinary frequency and the feeling of needing to go all of the time. Over time it felt like my crotch and pelvic area had been hit by a baseball bat. Then I developed allodynia, piriformis syndrome, and central nervous system hypersensitivity. The symptoms just developed and progressed slowly over time as more muscles went into spasm. I was quite a mess, really.

The diagnosis was made by a pelvic floor physical therapist who was trained in treating pudendal neuralgia. During a pelvic exam she pressed on the pudendal nerve at the ischial spine and at the alcock's canal and it was painful. I had accompanying musculoskeletal issues including sacroiliac joint dysfunction, chronic pelvic ligament strain from weightlifting, and pelvic misalignment.

I tried physical therapy, mindbody therapy, chiropractic treatments, kinesiology, drugs, pudendal nerve blocks. None of these helped much so I eventually had pudendal nerve decompression surgery (TIR) approach. If I were seeking treatment now, I would probably try amniotic allograft before surgery.

I can't say for sure what you should try but I think it is really important to get a good PT or manual therapist evaluation. Dr. Amarenco is very knowledgeable and experienced and if I lived in France, I would definitely consider seeing him.

Violet

[cathyatlantic]

Hi April and Violet,

Thank you so much for your posts. I had a bad PGAD flare up (and very bad pain in my urethra) since I had my urodynamic test last thursday. My urologist told me I don't have an intertistial cysticis nor an overactive bladder. I don't have incontinence either. My bladder is ok. I asked him why do I have a very sharp pain in my bladder and why do i feel as if I have a constant cystitis with genital engorgement. He told me it is PGAD but he doesn't think that I have pudendal neuralgia either. He told me he doesn't know how to cure me but he booked me into a pelvic floor physiotherapist and he organised TENS sessions for me.
Are TENS session good for PGAD ?
Why do we have this dull pain in the bladder when we have PGAD ? Is it the bladder or is it the vagina or the pelvic bone ? For me my PGAD has always felt as if it was a cystitis combined with vaginal discharges, genital engorgement and clitoris arousal.

I am booked to see Dr Riant and Doctor Rioult "Centre Catherine de Sienne" in Nantes on the 17th of October but I am not diagnosed with pudendal neuralgia yet so I am booked in the afternoon for nerve blocks. I don't think I should have them if I don't have pudendal neuralgia. The Amerenco team in Hôpital Tenon in Paris but they can only see me on the 23th of november to give me a final diagnostic.

My gynecologist insists that I take Hormonal replacement therapy but I am scared of making the PGAD and the tinnitus worse. The urologist was suggesting Lyrica but I am scared it makes me even more depressed and suicidal than I am. I am on Xanax and it doesn't work for me, it makes me very depressed but it helps with the tinnitus.

Thanks a lot for your help

Cathy