PGAD: Separating Fact from Fiction

In Female Pelvic Pain, Male Pelvic Pain by Stephanie Prendergast92 Comments

Persistent Genital Arousal Disorder or PGAD is a condition that’s been sensationalized in the media for years with headlines like “Nurse has 100 Orgasms a Day.” Back in 2012, a few news organizations did cover the condition in a more thoughtful manner after a woman suffering from PGAD committed suicide.

But since then the media has resorted to its old sensationalist tricks. As a healthcare provider who has treated patients with PGAD, I know how frustrating and disheartening this can be for those dealing with the condition. And that’s why I’ve decided to dedicate this post to a straightforward, scientific explanation of PGAD.

So what exactly is PGAD?

The International Society for the Study of Women’s Health (ISSWH) defines it as “a persistent or recurrent, unwanted or intrusive, bothersome or distressing, genital dysesthesia (abnormal sensation) unassociated with sexual interest.”

In other words, people with PGAD either constantly or periodically feel like they are on the verge of an orgasm in contextually nonsexual places and times. They are unable to turn this feeling on or off. Normal sexual response has been defined as a four-stage cycle: excitement, plateau, orgasm, and resolution. People suffering from PGAD are thought to exist in the stages between excitement and orgasm, with no resolution.

Symptoms can be associated with overactive bladder and restless legs syndrome and for some sufferers achieving orgasm only further aggravates symptoms. While the condition is thought to be more common in women, both men and women can suffer with PGAD.

Patients I’ve treated who have PGAD have described the feeling as “extremely embarrassing, distracting, and painful.”

“It is impossible to interact socially and professionally with feelings of arousal. Medical professionals and well-intended friends and family members think its funny or say they are “jealous.” They have no idea what I am going through,” said one patient. .

An important thing to understand about PGAD is that the symptoms are not pleasurable, but painful. Although there is a range of symptom severity among sufferers, this is a condition that can be devastating for people.

It’s only in the last few years that research has shed light on this perplexing problem. The current thought is that the symptoms of PGAD can be caused by excessive sensory peripheral information from irritated muscles, nerves and/or genital tissues and/or a central sexual reflex that is under decreased inhibition from the central nervous system.

Functional MRI brain scans can be used to gather physiological insights as to how people process sensation, pain, and in this case, feelings of arousal. In persons with PGAD, fMRI brain scans show over-excitation in the regions of the somatosensory cortex that represents the female genitalia. During a PGAD “attack,” or time when symptoms are exacerbated, researchers can see exaggerated brain activity and differences on the brain scans between people with PGAD and people without symptoms.

What causes a person to develop symptoms of PGAD?

Exactly what causes PGAD is currently unknown. In a recent study of 15 women, symptoms of genital pain, depression, and interstitial cystitis were found in over one half of the patients. In addition, previous antidepressant use, restless legs syndrome, and pudendal neuralgia were found in a number of cases. Pelvic varices and Tarlov cysts (fluid-filled sacs that most often affect nerve roots at the lower end of the spine) have been previously identified as possible contributors to PGAD, but these were not a common finding in this particular study.

Getting a Diagnosis

Currently a diagnosis is made based on a patient’s symptoms. While fMRI brain scans are showing abnormalities in persons with PGAD, these scans are being used for research versus diagnostic purposes. A limited number of physicians in the U.S. have experience with PGAD. These physicians can be found through ISSWSH (link to website).

Treatment

There are numerous interdisciplinary treatment combinations that are considered reasonable options for people with PGAD.

These includes TENS treatment, physical therapy, hypnotherapy, pharmaceutical management, pudendal nerve blocks, sympathetic nerve blocks, Botox, and neuromodulation.

It is important to remember that people with similar symptoms respond differently to various treatments. Interventions that do not help one person may help another and the order in which various interventions can play a role in the overall success of treatment. For instance, a medication or nerve block may make PT tolerable, so that the two modalities working together will have the best outcome.

If you have any further questions about PGAD or anything mentioned in this post, please do not hesitate to leave them in the comment section below!

All my best,

Stephanie

 

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Virtual sessions are available with PHRC pelvic floor physical therapists via our video platform, Zoom, or via phone. The cost for this service is $75.00 per 30 minutes. For more information and to schedule, please visit our digital healthcare page.

In addition to virtual consultation with our physical therapists, we also offer integrative health services with Jandra Mueller, DPT, MS. Jandra is a pelvic floor physical therapist who also has her Master’s degree in Integrative Health and Nutrition. She offers services such as hormone testing via the DUTCH test, comprehensive stool testing for gastrointestinal health concerns, and integrative health coaching and meal planning. For more information about her services and to schedule, please visit our Integrative Health website page.

Comments

  1. Reply

    What is a sympathetic nerve block and how does it work to stop PGAD? Would it still work if you had SSRI induced PGAD? Thanks

    1. Author
      Reply

      Hi Kellie,

      This is a great question. Typically the cause of the symptoms (in this case, an SSRI-induce case) does not dictate the response to treatment. A sympathetic nerve block is an intervention that is intended to try to treat the problem by influencing the central nervous system. This is different, for example, than a pudendal nerve block, which is directed at the peripheral nervous system. Both the peripheral nervous system and the central nervous may be involved in a person’s symptoms to varying degrees. If a person responds favorable to a sympathetic block we know the central nervous system is a factor for this particular person.

    2. Reply

      Can taking Wellbutrin after already having PGAD cause more damage with my condition. My new pc has no idea what pgad is and prescribed a generic Wellbutrin for anxiety. I don’t want my condition to get worse by taking Weekbutrin but I have slept for the first time in sixteen years since prescribed two days ago. TY for any advice.

    3. Reply

      Hi Kellie,
      I’ve tried every med, therapy and injections as well as nerve blocks for my PGAD and after five years, nothing has helped except Vicodin. I’ve lost all hope and cannot live like this anymore. Please help me!! I’m in Minnesota. My team of specialists have turned me away now saying they can’t do anything else. God please help me. Please!!!

  2. Reply

    They say when its ssri induced that its a central nervous system problem. I’m going to look into a sympathetic nerve block thanks.

  3. Reply

    Hi Stephanie,
    I think that I’ve responded on your blog previously, back during your series on PN/PNE. Regardless, I have either PN or PNE, I’ve been told I have permanent Pudendal nerve damage due to pelvic floor reconstruction surgery for multiple pelvic organ prolapses. Extreme pain in the lower left quadrant that even affected my ability to lift my left leg.

    I live in an area that pelvic floor physical therapy is not close enough for me to get to easily (over an hour away & can’t drive myself & don’t have the access to someone who can take me 2-3x/wk). My PCP has been doing his “best” to understand my condition and manage my pain, but I’m constantly trying to further educate him so he’s not doing his own research. I’m on a fentanyl pain patch 75mcg/hr, Baclofen 10mg, Tramadol 50mg,Oxycodone/Acetmenophen 10/325, Klonopin 1mg, Valium 2mg (vaginally), Phenagren 25mg and Gabepentine 300mg 3x/day, Cymbalta 120mg and my pain is still not controlled….very frustrating as you can imagine. I have recently started with a vaginal pain that I described to my husband as getting close to an orgasm, but never getting there, so pelvic pressure continues to build, with NO relief in sight. He offered to try and help me “get there”, but it’s indescribably, extremely uncomfortable for me to even insert a valium tablet, anything else is out of the question!! This sensation is relatively new (past 6-9mos) in comparison to how long I’ve had the PN condition (right at 8yrs, though getting actual diagnosis has been about 4-4 1/2 yrs).

    What can I do by myself to help with my pain since getting to PFPT isn’t doable for me right now? What can I do to try and get a local doctor to “take on” this condition?? What can be done to try and get more local PTs interested in pelvic floor issues?? Any suggestions?? Right now I’m feeling desperate and like a lost cause!! I know there’s groups like yours out there, but I can’t get to them for multiple reasons (insurance coverage, our own financial situations, my limited ability to travel…to name a few reasons). Thanks for any and all help you can offer….your time and input is greatly appreciated!!
    Best regards,
    Suzanne

    1. Author
      Reply

      Dear Suzanne,

      I am sorry to hear that you are going through this. It is possible to get the pain managed, you do not need to see a pelvic floor ‘specialist’ to do so. You will benefit from finding a pain management physician to review your medications and help you control your pain. As far as evaluation and treatment of the PN/PNE, Drs. Hibner and Conway specialize in post-surgical causes on PN. It may be useful to have a phone consult with one of the two of them to determine if you are a surgical candidate.

      All my best,
      Stephanie

  4. Reply

    Hello Stephanie,

    Thank you for taking the time to write this article! It is virtually impossible to find any reliable current literature on PGAD that is presented in a positive manner! Your article provides readers with an accurate, unbiased overview of PGAD and its implications for sufferers.

    In 2008, after 3 months of hellish symptoms and humiliating, frustrating encounters with healthcare professionals, I was diagnosed with PGAD. I was fortunate to have found a physician affiliated with the local medical college hospital who was as knowledgeable about PGAD as the infancy of this disorder allowed back then.

    Unfortunately, Dr. K has moved out of state, and her replacement has no knowledge of PGAD, much less treatment modalities. As a consequence, I am in desperate need of locating a healthcare provider in Southeast Wisconsin who is versed in PGAD. I would be willing to travel further if necessary! As resources are scarce regarding PGAD, would you or someone within your organization know of a healthcare professional I could contact for treatment?

    Any feedback is greatly appreciated!

    Best regards,
    Kathleen

    1. Author
      Reply

      Hi Kathleen,

      Please call our office and we will refer you to one of our colleagues in your area.

      1. Reply

        There are 4 locations listed on your website! Therefore, which office should I call and who should I speak to regarding a referral?

        Thank you,
        Kathleen

    2. Reply

      I’m in Milwaukee and have been seeing a Pelvic Floor Specialist who is amazing and very sympathetic. I’ve had pgad since 3 yrs old..I’m 59. It’s going to take time but I believe in her. I suffer daily. It’s called Continence and Pelvic Wellness Center and her name is Deborah Callif. Located in Mequon WI. 262-240-1202.

  5. Reply

    I’ve had PGAD for several years and taking Lyrica and going to PT have really helped me.
    My doctor says that I have central sensitization (which I don’t quite understand) and that it is important that I learn to turn the dial down to my nervous system. Are there exercises you can suggest to achieve this?
    I never want things to return as bad as they were in the beginning, so I believe my doctor is trying to say that an over-sensitive nervous system could bring back symptoms.
    Any help would be appreciated.
    Thanks

    1. Author
      Reply

      Hello Hope,

      There are several relaxation techniques that your therapist may be able to teach you. Unless we have evaluated you, I cannot recommend specific exercises for you.

      All the best,

      Allison

  6. Reply

    Hello Stephanie, My name is Samantha. I have yet to be diagnosed with PGAD. My clitoris has been throbbing/pulsing feeling for 7 months now. I’m pretty sure the onset of my symptoms were when I stopped taking my antidepressant remeron. I live in Buffalo, ny and it seems there are no doctors out here that know what pgad is. I feel like i’m losing hope because all the doctors I do speak to about this, tell me its in my head, or look at me like im crazy like im making this up, or they tell me to let it go. My symptoms are on and off, I’ve only had 2 times were i didnt feel them, and i just dont know what to do anymore. Ive gotten the ElectroTHERAPY TENS unit, but i dont know where to put the pads. I also sense devoloping these symptoms gotten back on the antidepressant that started all of this in hopes it would help it. I dont know what to do about this anymore.

    1. Author
      Reply

      Hello Samantha,

      I’m sorry to hear that providers have not taken your PGAD symptoms seriously. Unfortunately, there arent any providers or therapists in Buffalo, NY that I can recommend. If you are able to travel, I suggest you contact Jeanne Cioci in Liverpool, NY. Her information is located below.

      All my best,

      Stephanie

      Jeann Cioci, PT
      Summit Physical Therapy
      (607) 760-1823

  7. Reply

    I have a variant of PGAD- restless genital syndrome. I’ve tried everything, and the only thing that helps is Vicodin or oxycodone. Where do I find a doctor in Minnesota that won’t think I’m a druggie and take this disorder seriously? I’m truly at the end of my rope.
    Thanks,
    Katrina

    1. Author
      Reply

      Hello Katrina,

      Here are our therapist recommendations for Minnesota:

      Theresa Plasencia, PT
      Minnesota, MN
      (651) 493-0626

      Beth Stidham, PT
      Metro Urology
      St. Paul, MN
      (651) 999-2734

      Regards,

      Rachel

      1. Reply

        Hello
        I was diagnosed with PGAD in January of this year I live in London England yet my doctor is not sympathetic at all and just gave me a number to call saying it’s psychological when it is not.Yet I am at my wit’s end as I am on the constant verge all the time and it’s getting worse day by day.Do you know anybody that can help me here in London
        Thank you.

        1. Reply

          Also I have a very overactive bladder which makes it worse It’s the constant arousal it’s so intense it’s really making me feel so low and despondent.I do have a friend who is helping me cope but it’s so embarrassing and my doctor is just not sensitive to what I am going through at all.

          1. I have been prescribed with an anti depressant called Amitriptyline for this disorder but all I want is somebody to talk to me authority and not as a commodity.
            Thank you once again.I really am at my wit’s end and feel so alone with it all.As it’s such an embarrassing disorder nobody really understands unless they go through it themselves.

  9. Reply

    Wondering if I have PGAD. I have constant feelings of strong arousal in my clitoris and clitoral area, like someone has been stimulating me for hours but I haven’t had a release. This has been going on for 5 years. An orgasm will help to relieve this maybe for a few hours or for 24 hours. I have no pain, just the arousal feeling. A pudendal MRI has not shown any abnormalities and hormone levels are normal. I do not have restless legs or an overactive bladder.

    1. Reply

      Hello Anne,

      It may be so, but in order to know for sure, you will need to receive an evaluation to rule out other factors. Please contact a local therapist to schedule a consulation.

      Regards,

      Stephanie

      1. Reply

        Thanks Stephanie. What evaluation and other factors do you mean? Psychological?
        This is a very unwanted and distressing thing in my life. My gynea has prescribed Androcur as a “maybe it can help”, (it is an anti-androgen) but I’m very scared to take it. I can’t see it in the PGAD blogs I’ve been on as a treatment.

        1. Reply

          Hello Anne,

          I would recommend that you consult with San Diego Sexual Medicine for more information. Dr. Irwin Goldstein’s clinic is a multidisciplinary health care facility providing compassionate, state-of-the-art, evidence based clinical management for men and women with sexual health concerns. Here is their information:

          San Diego Sexual Medicine
          5555 Reservoir Drive, Suite 300
          San Diego, CA 92120
          p: 619.265.8865

          All my best,

          Stephanie

  10. Reply

    I have been diagnosed with PGAD by Dr Irwin Goldstein in Santa Barbara. He has gotten my hormones into a good range and treated my lichen sclorous but I still have episodes of PGAD. He never mentioned the things you talked about except the tens machine that doesn’t seem to help. I had surgery for tarlov cysts in dec of 2014. I live in Colorado and am so desperate for help. I have also developed anxiety. I am on 2 mg hydromorphone and 8 mg Valium. If I bring myself to orgasium it doesn’t really help at all. Is there any pt or doctor in Colorado you could recommend. I have had pelvic pain for 10 years but this PGAD is really unbearable.

    I just wanted to clarify something’s I said. Dr Goldstein has helped me so much with my PGAD by balancing my hormones and helping with my lichen sclorsous. He also recommended physical therapy as did the PT in his office. I wasn’t aware of all the problems that a PT can address. He is a wonderful caring doctor and very knowledgeable about PGAD. I would highly recommend him. I can call any day and talk with his staff about my issues. My problem is that I need physical therapy in Northern Colorado for pain and PGAD. Today is one of those difficult days. I hope I have explained any misconceptions from my previous email.

    1. Reply

      Hello Kathy,

      Below are the therapists and providers we recommend in your area:

      Nishimota & Neujahr Physical Therapy
      Holly Neujahr, PT and Terri Nishimota, PT
      Denver CO
      (303) 260-5092

      Denver Urology Clinic
      Nel Gerig, MD
      Denver CO
      (303)388-9321

      Colorado Physical Therapy
      Laurie Byrne, PT
      Ft. Collins CO
      970-221-1201

      Momentum Physical Therapy
      Mollie Ressler, PT
      Fort Collins CO
      (970) 377-1422

      Best,

      Stephanie

  11. Reply

    Would you know of any providers or PTs in Kentucky?
    Thank you.

    1. Reply

      Hello Eve,

      Below is a list of therapists in Kentucky that have taken our course. Although we do not have an affiliation with them, they are familiar with our treatment protocol. Here is their information:

      Hardin Jennifer PT Henderson KY (270) 827-8325 [email protected] Methodist Hospital
      Arms Hannah PT Louisville KY (502) 899-9363 [email protected] Dunn & Associates Physical Therapy
      Dunn Susan PT Louisville KY (502) 899-9363 [email protected] Dunn & Associates Physical Therapy
      McElroy Melissa PT Louisville KY (502) 899-9363 [email protected] Dunn & Associates Physical Therapy
      Raible-Wilson Erin PT Louisville KY (502) 899-9363 [email protected] Dunn & Associates Physical Therapy
      Bauman Barbara PT Lexington KY 8592192233 [email protected] Bauman Physical Therapy

      Regards,

      Stephanie

      1. Reply

        Would you know of any doctors in CT specializing in PGAD? Please please email. Thank you so much.

  12. Reply

    I know this post is old at this point but I could really use some help. Can you tell me if there is a good doctor–a pelvic floor specialist or something–who might know about this condition and treat it specifically in the Denver area or southern CO at large?

    Also thank you *so much* for sharing this and writing it so well. I even took it to my doctors office with me to educate her. Again, thank you.

    1. Reply

      Hello Susie,

      Below are the therapists and providers we recommend in your area:

      Nishimota & Neujahr Physical Therapy
      Holly Neujahr, PT and Terri Nishimota, PT
      Denver CO
      (303) 260-5092

      Denver Urology Clinic
      Nel Gerig, MD
      Denver CO
      (303)388-9321

      Colorado Physical Therapy
      Laurie Byrne, PT
      Ft. Collins CO
      970-221-1201

      Momentum Physical Therapy
      Mollie Ressler, PT
      Fort Collins CO
      (970) 377-1422

      Best,

      Stephanie

  13. Reply

    Why did my WordPress information and profile photo automatically show here?!?

    This is extremely private information.

    I see my comment is pending moderation. Please remove it!

    I only listed my email address because it was required!!!

    I’m shocked and upset by my picture and other information being accessible here!

    1. Reply

      Hello Jen,

      None of that information is revealed on our blog except perhaps an email in the comments section. We use WordPress but cannot control what information they request in order to post a comment. In regards to your original question, we do not have a therapist recommendation in your area at this time.

      Best,

      Stephanie

  14. Reply

    Hi Stephanie, thank you for this article. Could you recommend a PT in the Nashville, TN area? Also, do you know of any MD’s in the area I could reach out to?
    Thanks
    Blair

    1. Reply

      Hello Blair,

      Below are provider recommendations in TN. I hope this helps!

      Nieves Alfredo MD Chattanooga TN (423) 4901136 Pelvic Pain and Reconstructive Surgery Center
      Kubic Melissa PT Chattanooga TN (423)778-8660

      Best,

      Stephanie

  15. Reply

    Hello,
    I’m looking for providers in the Ohio area, especially central Ohio. I believe I have a mild form of this along with OAB. I also went into premature menopause at 39, which I believe started all of this discomfort. Any info that can be provided would be appreciated.

    1. Reply

      Hello Kathy,

      The Cleveland Clinic has a great pelvic pain center, and would be a good place for you to get started with treatment. Here is their information:

      Betsy O’Dougherty, PT
      Cleveland Clinic
      9500 Euclid Avenue,
      Cleveland, Ohio 44195
      1(800) 801-2273

      All my best,

      Stephanie

  16. Reply

    I have PGAD. I am 62 and the Internet is the only place who have answers. This started in June. I have been to 5 Drs with no help whatsoever. I want my life back. I live in North Georgia/Tennessee area. I use menthol to cool myself down. I can’t think about anything else and don’t know how much longer I can take this. I’m exhausted from pain pills, Lyrica, antidepressants, etc. PLEASE HELP ME SOMEONE
    Rose

    1. Reply

      Hello Rose,

      Below are therapist recommendations in your area:

      Kubic Melissa PT Chattanooga TN (423)778-8660
      Howell Lone PT Auburn GA (770) 995-5242 Physiotherapy Associates Lawrenceville
      Hunt Jenny PT Alphretta GA 678-819-8720 Provenance Rehabilitation of the Greater Atlanta Area

      Regards,

      Stephanie

    2. Reply

      Hi Rose, there was a woman cured of RGS through brainspotting. You have to see a psychologist to get this done. I just started a few weeks ago. Although it’s a slow process, I pray it does the same for me!

  17. Reply

    Can you please tell me if there is a dr in Los Angeles that treats PGAD ?? And name of over the counter cream please. I can’t live with this much longer. Thank you
    Laurie

  18. Reply

    Please Help, I have been experiencing all symptoms of PGAD, IT is so frustrating, it’s debilitating… It’s taking over my life. I’m at wits end! Do you know of ANY Dr that could see me for this horrible condition.. In the Lubbock, Tx area? Please, and Thank You,
    Robbie

    1. Reply

      Hello Robbie,

      We do not have a therapist or provider recommendation in your area. Are you able to travel elsewhere?

      Regards,

      Stephanie

  19. Reply

    Does anyone know of any help in the NJ New York area? Has acupuncture or chiantix worked?
    Thanks

    1. Reply

      Hello Laura,

      I apologize for the delayed response. We have received a high volume of inquiries, and have been unable to attend to them in a timlier manner. Below are therapists in the NJ area that are able to assist you:

      Herzig Niva MS,PT Englewood NJ 201-568-5060 Core Dynamics PT
      Besante Jamie PT Beachwood NJ (609) 978-3110 Southern Ocean Medical Center
      Dela Rosa Michelle DPT Columbus NJ (609) 379-0900
      Ryan Angela MD Englewood NJ 2015672277 Physical Medicine and Rehabilitation Center
      Goldman Debra PT,MA, PRPC Florham Park, NJ 973-845-2592 Four Corners Physical Therapy
      Ely-Maskal Nancy PTA Englewood NJ 2015672277 Physical Medicine and Rehabilitation Center

      Best,

      Stephanie

  20. Reply

    Hello,
    I’m currently 21, I have had this condition as long as I can remember I think I was probably born with it. Along with the usual symptoms of this condition I get a lot of random twitching and no pain involved with that area. However, unlike in other places I read, I have bad pain in my left grion, labia, and over pubic bone. I’m wondering if my PGAD is causing pain in these places as well or if it’s unconnected. Maybe it is causing me to get tight since I am always fighting against symptoms and is therefore causing that extra pain. I’m just worried because I’m getting exploratory surgery and no one knows I have PGAD and the surgeon may not find anything because the PGAD may be causing my undiagnosed pain that no one can explain why I have it. So overall what I’m saying is can/ do you think PGAD could be causing my pain that is higher up? Ps I have had a lot of diagnostic tests done all clean

    1. Reply

      Hello Jamie,

      I apologize for the delayed response. We have received a high volume of inquiries, and have been unable to attend to them in a timely manner. As far as your symptoms, it is possible that PGAD is causing secondary dysfunction, and thus it is IMPERATIVE that your providers/surgeon are all aware of your diagnosis. Although I cannot say whether this is 100% the root of your issue, and so I urge you to consult with a local pelvic floor therapist who can help you navigate the treatment journey.

      I wish you all the best,

      Stephanie

  21. Reply

    Do you known if anyone in the St. Louis, Missouri area? I think I may have this going on- as I have a constant arousal feeling. Thanks so much! It started after going off of hormone replacement therapy. I’ve got a great OB, but she’s not really knowledgable about this.. Thank you!

    Sincerely,
    Jen Parks
    [email protected]

    1. Reply

      Hello Jen,

      I apologize for the delayed response. We have received a high volume of inquiries, and have been unable to attend to them in a timely manner.Below is our therapist recommendation in Missouri:

      Gibson Sandy PT Kansas City MO (816) 932-3344 [email protected] Saint Luke’s Hospital

      Best,

      Stephanie

  22. Reply

    I am a 47 year-old male, in good shape, albeit under substantial stress, who began to experience PGAD symptoms subsequent to my divorce. My medical history includes restless legs syndrome and past SSRI use – I have found that Lorazapram has done a decent job of neutralizing my symptoms, but that the symptoms will reappear immediately if I stop taking the medication; moreover, the severity of the symptoms renders me nearly useless and I’m completely unable to concentrate – not good for a lawyer and just humiliating as a general proposition. I am in the process of scheduling an appointment with the Boston branch of PH&R and hope to find a more permanent solution to this loathsome ailment than my current pharmacological treatment. Either way, the ladies should know they aren’t entirely alone!

  23. Reply

    Is it true that PGAD can be caused by cystitis? Last week my doctor/gynaecologist diagnosed me with cystitis and I took some medicaments, but it’s been since 4 days ago that I fear I feel the PGAD symptoms. I have to admit I am hypochondriac, but I feel like all day someone is stimulating me with a feather and I’m going crazy, I can’t stop crying and I don’t have the courage to talk to my mom (I’m 20)… And my doctor said she won’t be able to give me treatments until I have the results of my urine… Which I’ll have and the end of next week. I don’t think I’ll survive in this situation! If I cure the cystitis, will it go away? I’m so scared, I’ve been having panick attacks! I have to specify that I live in Italy and that I’ve always practiced self-erotism once a day, but since I’m curing a cystitis I’ve been restraining myself (for over a week, now).

    1. Reply

      Author Stephanie Prendergast says:

      Cystitis can be associated with PGAD, treating the cystitis may reduce the symptoms. If the symptoms do not clear up when the infection does than other sources of the symptoms likely exist. This can include the pelvic floor muscles, connective tissue, and/or nerves. A pain management physician and pelvic floor physical therapist can help you figure out the sources of your symptoms.

  24. Reply

    I have been living with what I think is PGAD for the past 8 years. Neither my family physician nor my OBgyn take me serious. I have the feeling of being aroused all the time with little relief. It is to the point it keeps me away at night. I have a few days of peace a month but not many. I really cannot pinpoint when or how this started but I just want it to end. I do take lexipro for anxiety but that has done nothing to stop the agony. Ice packs help on some occasions and I have tried things like icy hot and bengay but I am sure I am risking my health using those things. And just when I get a few days peace it returns with a vengeance and nothing stops it. I am losing my mind and just want to find some relief but no one believes me. My poor husband tries to help but it is hard to explain to him that having an orgasm only seems to make it worse. I really could use some help and relief. I am 57 years old and just want this to end. Please help.

  25. Reply

    Please help. I am pretty sure I have PGAD but none of my doctors will listen to me. The feeling of arousal is relentless. This has been going on for the past 6 years with no end in sight. I am exhausted from not sleeping and I am tired of going to bed with cold compresses or bengay applied to my pelvic region. I cannot make my husband understand what is going on especially trying to explain to him that orgasm makes it worse. If you could recommend someone in the Harrisburg, Pa area I will be so greatful. I am literally losing sleep and my mind.

  26. Reply

    Hello, I am looking for providers in the Harrisburg, Pa area. I have been suffering with what I think is PGAD for the past 6 years. I feel like I am losing my mind. My hormones have been tested and they are normal and neither my family doctor or my ObGyn know anything about PGAD. I am super frustrated and I am sure using bengay and icy hot are not good for you, and I am truly tired of sleeping with an ice pack. It wakes me up at night, and lately it seems to be getting worse. I cannot think of anything but that. Please help!

    1. Reply

      Hello Kathy,

      All posts are moderated. They must be approved before “going live.” In reference to your concerns, We do not have a PGAD medical referral, but we can offer you recommendations for pelvic PT’s in the PA area. We suggest contacting them since they will most likely have a larger network of local providers.

      All my best,

      Admin

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  28. Reply

    Hello,
    My daughter is 8 years old and she has been to the pediatrician and a urologist and she keeps complaining of a tickle feeling in her clitoris. I was searching on line as a worried mother does and came across pgad. I am SO worried I pray this is not something she may have. She is only 8 years old and she cries about it. Is it more than just a tickle feeling?

    1. Reply

      Author Stephanie Prendergast says:

      “Unfortunately we do not know enough about PGAD to know if it can begin wit the type of symptoms you describe. Dr. Irwin Goldstein is a urologist in San Diego and likely has the most experience with PGAD. I suggest you arrange a phone consult with him as he may be better able to guide you.”

  29. Reply

    I really need a good doctor who knows about this. I’m currently in Houston, TX. Is there a doctor close to me who deals with this issue? If not I am willing to travel but first would like to see if there is someone here who can help.

    Thank you

    2. Reply

      I live in Houston and am wondering who you saw for your issue.

  31. Reply

    My daughter has developed what we believe is PGAD from Trazodone that was prescribed to her as a sleep aid/anti depressant. She stopped taking the Trazodone, but continues to have symptoms. She’s been taking Welbutrin for about 2years and still takes it daily. She is very scared/anxious, and is having trouble sleeping and functioning in her daily life.
    Has anyone reported success with therapies such as acupuncture or similar?
    Do you have a health care provider familiar with this issue to recommend in the Asheville, NC area?

  32. Reply

    Hi,

    Do you have a PGAD specialist recommendation for South Florida? I am in Ft. Lauderdale.

    Thank You!

  35. Reply

    I suffer from PGAD and I live in St Louis, MO. Can anyone lead me to find a doctor who can help me here, in St Louis?

  36. Reply

    Can using a tens machine to strengthen my pelvic floor muscles which have become weak and are leading to problems make PGAD worse?

    1. Reply

      Author Stephanie Prendergast says:

      Possibly. We do not usually recommend electric stimulation internally for people with PGAD because it may temporarily aggravate things.

  37. Reply

    Hello,. I hope someone is there to help me. I’ve been on Methadone for over twenty years ,with Percocet and vicadon before that and now am on oxycodone and morphine. And I just found out this last year that other women do have this problem and that there is even a name for my pain! I spent over a month in the hospital, most in ICU, last summer and almost died. There have been plenty of times since that I wished I had. Now all the drs. worry about is me being on opioids. I am at my wit’s end , I am crying now and can hardly see screen. I have lost 68lbs in the last 7 mths because I can’t eat from nausea. I am ready to give up. Is there anybody in Seattle/Tacoma area that knows anything about this curse? Please? Sheila

  38. Reply

    I see Dr Peters in Detroit but live in Cincinnati. I have 2 neuromodulators in my back- one in my pudendal nerve and one in my sacral nerve. Peters is the absolute best, but I am still suffering. It never goes away. Are there any specialists in Cincinnati?

  39. Reply

    Hello, I’m not sure if anyone is active on this anymore, but my wife has developed what we believe is PGAD about 8 months ago and it has been a nightmare. She got off some CCRI meds that we believe may be to blame, but she also had a muscle injury (umbilical hernia) near that time as well. Her current doctors either aren’t familiar and chasing their tails or don’t take her seriously. We live in Illinois near St. louis. Are there any resources or next steps you can help us with? Local specialists? We have a TENS unit but aren’t sure about placement. Please help!

  40. Reply

    I’m a male with PGAD- Yep we can have it, too. I believe i got it taking Trazodone.
    I have no idea where to find a doctor that can help me.
    I live in the Dallas-Fort Worth area of Texas.
    Thank you

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