By Brooke M. Faught, MSN, WHNP-BC, IF
Healthcare providers (HCPs) need to understand a patient’s experience of a health condition in order to provide effective care in a holistic manner. This recommendation is especially important in cases of elusive health conditions that may be unfamiliar to most patients and even to some HCPs. In Part 1 of this two-part series, readers learned that persistent genital arousal disorder (PGAD) involves unwanted, unwarranted, persistent symptoms of genital arousal that frequently border on pain. In many cases, these symptoms are debilitating. In Part 2 of this series, two women share their personal experiences with PGAD. Two additional accounts of PGAD are shared below.
Patient story 3
In May 2015, I was a 44-year-old woman living a pretty normal life in northern New Jersey with my family. I was a cheerleading and soccer mom who was looking for a job after being a stay-at-home mom for 15 years. On May 3, 2015, my life changed. I woke up one morning with feelings of a urinary tract infection (UTI) and feelings of arousal. I told myself that I must be imagining the arousal part and that those feelings must be from the UTI. I saw my primary care doctor, who said that I did not have a UTI and that, if my symptoms persisted, I should see a urologist. The urologist gave me medicine for overactive bladder, but it didn’t work. I never told the urologist about the arousal symptoms because I was too embarrassed. He did a cystoscopy and a urodynamic study and found nothing wrong.
I started doing my own research. I was taking Cymbalta (duloxetine) for generalized anxiety disorder, which I’ve had my entire life. Otherwise, I was quite healthy. I had mild peripheral neuropathy and arthritis, but neither of these conditions affected my life. Through my research, I learned that antidepressants such as Cymbalta might cause the UTI symptoms and the arousal feelings. I called my psychiatrist, who was treating me for the anxiety, to tell her about what I’d read, but she did not believe me. I felt like I was being tortured by the arousal feelings, but I couldn’t do anything but cry all the time. So I decided to go off Cymbalta on my own. I weaned myself from it very slowly. After a few weeks, the UTI symptoms and arousal feelings disappeared. I could not have been happier. I felt as though I got my life back except for one thing—the anxiety was back.
The psychiatrist recommended trying another antidepressant and convinced me that the arousal feeling was just a quirky reaction to the Cymbalta. I decided to start Lexapro (escitalopram). Two days into the new drug, all the feelings I had in May came back. I had had only 1 month of being arousal free and having no UTI symptoms. I immediately stopped the escitalopram, but this time, the arousal feelings did not go away; I was back to being tortured. I sat in the bath that night and just cried my eyes out. I always felt like a strong person, so I told myself that this problem was not going to beat me.
I started Googling on my phone for answers. I like to call it contacting Dr. Google. To my surprise, there was a name for what I had. I couldn’t believe it. At this point, I knew I had persistent genital arousal disorder, or PGAD. I diagnosed myself. Now the question was, “What do I do?” I was too embarrassed to tell anyone, even a doctor. I felt like a disgusting and filthy human being. How could this be happening? I decided to masturbate, thinking it would relieve the arousal. It didn’t! It just made the feelings stronger. I couldn’t tell my husband about my problem; I thought he would think I was disgusting too. The arousal symptoms were so strong that they would force me to masturbate, even though it actually made me feel worse. Each day I felt as though I was living in agony. I liken it to feeling raped over and over again.
I finally summoned the courage to tell my best friend, who was sympathetic and understanding. I also told my husband, who was concerned. Neither of them looked at me differently, but I was different. I was not the same person I used to be. I thought of killing myself many times. Having two daughters, aged 12 and 15, was the main thing holding me back. Because I was this upset, I tried the urologist again. He did some testing. But I could not hold back the tears. I am a strong person, not a crier, but this problem brought me to my knees. This monster that was inside me made me feel like I was crazy. I actually wished that I had cancer instead. The urologist told me that I needed to see a psychiatrist and that it was all in my head. I sat in the parking lot, crying. I called my friend, who calmed me down enough so that I could drive home.
I then found a urologist who was familiar with PGAD. He put me on Chantix (varenicline), which made me very sick: headaches, dizziness, and an upset stomach. It was December, and I thought that this would be my last Christmas with the girls. I couldn’t help it. I couldn’t live like this. I called my acupuncturist and summoned the courage to tell her about the PGAD. I figured, “What do I have to lose?” I was going to kill myself anyway. She did a treatment on me, which at least calmed me down. She also found a physical therapy center for me, a place that helps people with this issue. I got an appointment right after the first of the new year. I felt hopeful.
Meeting the physical therapist, I did not know what to expect. She was kind and tried her best to make me feel comfortable, but I was shaking. She said that she thought she could help me because my pelvic muscles were extremely tight and having spasms. During these sessions, for the first time in my life, I started having panic attacks. I was afraid that I would have an orgasm if she touched me. However, most of the reason I am alive today is because of her. She gave me hope, and that is what I needed. She tried different methods and relaxation techniques. I could tell that she wanted to help me. I asked her how long it would take to see improvement and she said, “three months.” I thought that I could hold on for that long.
Three months came and went, and I withdrew more and more from my kids, my friends, and my husband. I was alive but not living a life. At this point, my husband and I had no sex life at all. My husband kept looking at me with sad eyes and my poor kids didn’t know what to think. Things were so bad I didn’t even ask them. I completely withdrew from the world except for my Facebook support groups. I didn’t feel as alone then.
My physical therapist sent me to a doctor in New York City. This doctor ran all sorts of tests and said that I might have interstitial cystitis (IC) and PGAD. She gave me gabapentin and aloe vitamins, neither of which helped. The doctor then ordered ileoinguinal nerve injections and Botox injections. At this point, the feelings of arousal extended from my clitoris to my rectum. I had rectal pain too. The Botox helped the rectal pain but nothing else. The doctor put me on Elavil (amitriptyline) too, to no avail.
I was constantly aroused, 24 hours a day. It is like having an itch I couldn’t scratch. I went to bed crying every night. At this point, I began sleeping on the couch. I needed to either masturbate or use two ice packs, one in the front and one in the back, with hope it would numb the area and I would doze off. I also tried meditation and stretching, but nothing worked. I didn’t want my children or husband to know any of this. My younger daughter always wanted to snuggle with me in bed, but I couldn’t do it. She was so confused. We were so close and I didn’t want her near me. I felt isolated, depressed, anxious, and desperate.
After that I tried ArpWave therapy, which is similar to a TENS unit but more powerful. I tried it for a month, along with more vitamins. I was so desperate I would try anything. At the same time, I felt so guilty about the money I was spending; most of the doctors I saw didn’t take insurance. This approach didn’t work either. I was thinking about ways to kill myself so that my family could get my life insurance money. I then tried marijuana. I had capsules made for me; I increased the dosage weekly. Every time I increased the dosage, I was stoned but still aroused. Another failed attempt.
During this time, I was seeing a therapist as well. My depression and desperation intensified. The therapist convinced me to see a psychiatrist and get on an antidepressant. The psychiatrist was so caring, even though I was not an easy patient. She insisted that I overcome my fear of taking medicine. She is the other reason I am still alive and fighting to rid myself of this torment. She was extremely helpful, giving me different techniques to deal with my problems. And she gave me hope.
My therapist recommended another doctor whose office is an hour and a half from my house. He diagnosed me with IC. He gives me bladder instillations and tried me on all different types of medicines. Every time I tried a different one, I lost or gained weight or was sleepy or energetic. He also taught me to do the instillations at home, so I learned to self-catheterize. Acquiring this skill was not on my bucket list. I would sometimes get urethral spasms, which are relieved with oxycodone. I still see this doctor now, but I am not better. I open my pill closet and I see tons of bottles of medicine. It reminds me of my grandmother when she was 80.
It is November now, and I decided to call another doctor whose office is even further away. I would need to travel across the country to possibly get help, using more money that we didn’t have. My relationship with my husband at this point was deteriorating quickly; I don’t even think we had one anymore. I detached from everyone. My only safe places were with my therapist or with my physical therapist. My husband said he felt helpless. We grew further apart because I was not interested in sex. I don’t want to be touched or be with people. My 12-year-old, who is very affectionate, wanted to sit on my lap and I wouldn’t let her. My 15-year-old wanted to hug me goodnight and I just sat there and told her I didn’t feel well. Both of my girls’ faces were so sad. They felt like they had lost their mother. They did lose their mother: I felt too disgusting to have these arousal feelings while holding or hugging them.
I had a phone consult with the new doctor. He told me to get an MRI with contrast done and to send him the results. I went to my chiropractor to get the prescription for the test, but he didn’t believe me. He told me it was stress. My primary care doctor ordered the MRI. After getting the results, I learned that I have pelvic congestion syndrome. I immediately called my physical therapist, who told me to go to an interventional radiologist. In May of that year I had had hemorrhoid surgery (hemorrhoids are common with pelvic congestion syndrome). I made an appointment with an interventional radiologist, who performed an embolization on my veins. I thought for sure this was the answer. I was excited and thought my misery would finally end. After the procedure, the radiologist told me it would take months to see if it worked because my veins were larger than anyone’s he had ever seen. There were also more of them surrounding my pelvis than he had ever seen. However, it gave me hope and it got me through another Christmas.
The arousal feelings are still here. It is impossible to sit, stand, walk, or do any activity for too long. My life as it once was seems gone forever. I was an energetic woman who never stopped moving. I was social and happy. I jogged every day and always ate healthfully. I wished I could have anything else but this problem. I don’t feel comfortable talking about my problem, so I have had no outlet, which has completely turned my life upside down.
I asked my 15-year-old daughter how she felt about everything going on with me. Like most 15-year-old girls in love with their boyfriends, she is pretty self-absorbed. She said, though, that she felt scared when I couldn’t get up because of the pain. (After having the arousal all day, it turns into pain.) I would have urethral spasms that hurt so bad I had to take oxycodone. I could barely walk when this happened. I asked my younger daughter, who has always been a mama’s girl, how she felt. She didn’t answer me. I asked her again and she got angry and said, “I don’t want to talk about it,” and ran to her room. My husband tried to talk to her and she wouldn’t budge. Two hours later, she came into my room sobbing. She said, “You go to the doctor’s and you never get better.” She added, “I want my mommy back.” I was heartbroken. My first thought was that they would be better off without me.
I spent one night scouring the Internet trying to figure this out. I thought that maybe paralyzing myself from the waist down would take away this monster that lived inside of me. I wouldn’t be crazy or in pain. I would just be in a wheelchair, which I felt would be better than this agony. At this point, I had stopped socializing with friends because I didn’t want to have these arousal feelings in front of everyone. If I would go out, all my clothes had to be loose fitting so the symptoms would not get worse. My friends don’t even expect me to come out anymore.
It is now 2 years in, and I went back to check on the varicose veins. The interventional radiologist said they would be gone. To his surprise, I was unique in having a vein on the left side that was still carrying blood. The right side was fine. The only thing he could do was put in a stent to block the blood flow. He told me to think about it, because the procedure is risky; it could cause a blood clot on my left side of my body.
My physical therapist sent me to another doctor in New York City who said I did not have IC. He believes I have pudental neuralgia, which is causing my arousal symptoms. I felt arousal all over from my clitoris to my rectum. After a year of treatment for IC, I came back confused, not knowing whom to believe. I have to go see another interventional radiologist to get a guided pudental nerve block. I am still waiting because it took 6 weeks to get an appointment. Six weeks feels like an eternity when you are just trying to survive. He might send me for another MRI, depending on the results of the block. If I have pudental neuralgia, I have some options of injections and some surgeries but will not know for a few weeks. He does not want me to get the stent put in at this time because the procedure carries many risks and he was not sure it was going to work.
Since the onset of my symptoms, I have seen a total of 17 doctors. At this point, I would like the psychiatric community to know what PGAD is, what causes it, and how to cure it. We need more doctors who believe us and are interested in our cause. We need insurance companies to cover the cost of the treatments. Most insurance companies will not pay, stating that the treatments are experimental. So many people can’t afford treatment or the treatment location is too far away. I feel guilty over the financial burden I have become to my family.
PGAD has destroyed not only my life, but also my marriage, my children’s lives, and my relationships with friends. It makes you feel like you’re going insane. I have panic attacks now and it takes all of my energy just to make it through the day. I don’t wish this torture on anyone and that is exactly what this is—torture.
Patient story 4
Editor’s note: In this patient’s account of PGAD, he provided information requested of him in a structured format.
Please include the following information in your story, although you can eliminate questions that you do not want to answer:
- Age (<20, 21-25, 26-30, 31-35, 36-40, 41-45, 46-50, 51-60, 61-70, 71-80, 81+): 26-30
- Age at time of onset of first PGAD symptoms and age at time of PGAD diagnosis: 18
- # of healthcare providers seen before you received the diagnosis of PGAD: >5
- Any known cause(s) of your PGAD?: Both pudendal neuralgia and sudden stopping of the SNRI (serotonin/norepinephrine reuptake inhibitor) Effexor (venlafaxine) have been implicated.
- Health history (e.g., diabetes, heart disease, anxiety, depression): Depression
- Menstrual status (e.g., menopausal, postmenopausal, childbearing age): I am a male.
- Region of the U.S. or country in which you reside: London, U.K.
- Are you sexually active? No, not for a few years
- How do you experience PGAD? What are your symptoms? With an erection, which does not coincide with feelings of arousal, or without one, the extreme discomfort is the same. Symptoms have been ever-present for more than 9 years. Knocks and bumps to the penis bring on symptoms almost immediately, and sitting for more than 10 minutes can exacerbate them unbearably. Sitting in a car is impossible. Even vibrations on public transport (whether standing or sitting) cause my symptoms to erupt. Physical activity, exercise, lifting heavy things, and especially doing exercises affecting the legs and pelvis cause a terrible flare-up that may last a few days. A flare-up consists of painful feelings of physical arousal, an overwhelming feeling of penile pressure, and the desperate need to ejaculate. But no matter how many orgasms I try to knock out, the symptoms do not settle. In the absence of any treatment, I was spending every day lying down or sitting on a toilet seat, needing to masturbate more than 10 times a day—even after rubbing the skin of my penis raw—until I was so exhausted that I would fall asleep. I always wake up with the symptoms. Often in the past, the symptoms awakened me from sleep.
There is no level 0; there is never a time when I do not have some degree of symptoms and an awareness of them. Sometimes I am aware of the symptoms, but they are not yet interfering with my life. They can be soothed by massaging the area, controlling my thoughts, changing position, or getting up if I am sitting down. I can concentrate on cognitively demanding tasks and feel that I am living. My mind can host positive thoughts and things seem good and possible. I avoid sexual thoughts and images as best as I can; otherwise, my symptoms progress to the next level. Stimulating the area while in this state, experiencing knocks and bumps, and submission to a sexual image or thought can all trigger a spike in symptoms.
At the “point of no return,” I become acutely aware that the symptoms have now taken a foothold. Beyond this point, none of the measures previously discussed push the symptoms back. At this level, I experience a sudden intrusion of sexual thoughts and imagery, like a dam bursting. The symptoms begin to interfere with my life and my concentration falters. I feel the desperate need to masturbate but can still push through and get on with tasks without feeling completely incapacitated (similar to being able to read a book despite hearing noise at a nearby construction site). I can still have positive thoughts, but I become acutely aware of my limitations and hope begins to diminish.
At the next level, pain has begun to interfere with my concentration and physical integrity. I cannot concentrate. I feel I can’t be comfortable anywhere, even though the most relatively comfortable position is lying down. I begin to suffer a great deal and become depressed, upset, and terribly frustrated. I cannot perform physically or cognitively demanding tasks such as study or reading academic material. Even watching television or doing light reading is not possible.
At this point, arousal has blurred into pain. It is the only way it can be described. My penis and buttocks, as well as the perineal area, are “angry.” Every moment is hell. I feel as if a single hour is stretched to the limit. I want to die. I feel things would be better if I were dead and then it would all be over. My mind is hostile to any feelings of hope or positive thoughts. The future seems bleak, and I feel as though I will never be able to achieve anything I had planned.
All of this takes place within the space of 4 hours. To reset this clock, I need to masturbate for another 2-3 hours.
- How bothersome are your symptoms? They have utterly destroyed me.
- How do your symptoms of PGAD affect your daily living? I wake up to the symptoms. Before I can eat, shower, or do anything, I must begin the process of relieving myself. On the days I work, or have an appointment, I must get up at the crack of dawn to begin the masturbation process that will give me the relief I need to go out into the world for a few hours. I am terrified of being out of the house too long. Long trips, particularly on the public transport in London, are excruciating. By the time I get home, I need to masturbate again. It has consumed my life. It obscures my thoughts, my personality, my very being. I live in a world of painful white noise, punctuated only by short periods of peace into which I must fit my entire life.
- How has PGAD affected your intimate relationships? I can’t have intimate relationships. I can’t concentrate on a date, or a day out, or just the nonsexual aspects of intimacy, which I usually love, until I have had some kind of relief. I would need to relieve myself before meeting my partner so that I could focus just on her. When we did have sex, once was never enough. When we would usually be “done,” my nightmare was just beginning. The first orgasm would actually make it worse. I would then need to lie there masturbating at least one or two more times before I felt normal, which never looks good. PGAD has poisoned my intimate relationships. In my most recent one, by the end of it, she had become just an object, and I felt I was losing myself in the act. I do not think I will have another intimate relationship until I’m sure I can interact meaningfully with another human being.
- How do you cope with PGAD symptoms (e.g., ice, rest, masturbation)? I need to masturbate for hours every day. It is the only way to have any productivity or some semblance of a quality of life. I have had to learn to masturbate with my left arm, because when I had to use my right arm, it would become a dead weight from the exertion to the point that I could not even write with it afterwards. I have to spend a lot of time in my room, lying down and resting. Ice or ice cold water is also an essential part of my routine.
- Which medical therapies have you found effective to manage symptoms? Lyrica (pregabalin) is my life. Without 600 mg a day, I know I would be dead. Gabapentin has been prescribed in conjunction with pregabalin and makes a marginal difference on top of it. Amitriptyline in conjunction with the above is also indispensable. Fluoxetine helped for a while but lost its efficacy. Pudendal nerve injections and a hypogastric plexus block, as well as a ganglion of impar block, have all failed or made matters worse. Many more treatments have failed.
- What do you want healthcare providers to know about your experience with PGAD? I do not like this. I can never learn to enjoy it. I am not a sex addict. It has nothing to do with sex. The worse PGAD is, the less sex you have. It is more painful than the most painful mainstream condition you can imagine. I want to be taken seriously. I do not want to be treated like an addict. I am not seeking drugs. I just want this unrelenting pain to stop.