What is persistent genital arousal disorder/genito-pelvic dysesthesia and what can be done about it?
Amy is a 37-year-old female who is happily married with one child. Over the past 6 months, Amy has begun to experience some “irritation” in the pelvic region. She has specifically been having feelings of swelling, throbbing, and tingling in the clitoral area. She has gone for testing to make sure there is no sign of infection or irritation but every time she goes to the doctor, they tell her “everything looks fine” and testing comes back negative. She has tried everything she can think of without relief including only using water on her vulva, wearing looser clothing, and even eliminating underwear when she can. Amy is feeling extra frustrated because this “irritation” has begun to affect her sex life to the point that stimulation in the area seems to worsen her symptoms. After going from doctor to doctor, she finally found one who shared that she may be experiencing persistent genital arousal disorder or PGAD.
Persistent genital arousal disorder/genito-pelvic dysesthesia (PGAD/GPD) has recently received a definition update as of 2021. It is described as “persistent or recurrent, unwanted or intrusive, distressing sensations of genital arousal (eg feelings of being on the verge of orgasm and of lubrication and swelling, tingling, throbbing contractions) that persist for greater than or equal to 3 months and may include other types of genito-pelvic dysesthesia (eg buzzing, burning, twitching, itch, pain)”. Dysesthesia is abnormal sensation. The clitoris is the most common location but other regions within the pelvis can be involved. Typically, there is either aggravation or little to no resolution of symptoms with sexual activity and aggravation with certain activities, like sitting, driving, or stress. On physical examination, there will be no evidence of genital arousal including lubrication or clitoral swelling. Approximately 0.6-3% of women worldwide are affected; unfortunately, this diagnosis remains largely unrecognized by healthcare practitioners and requires more research.1
In 2021, a panel for the International Society for the Study of Women’s Sexual Health (ISSWSH) created a review to further clarify the available research, description, and treatment options for this condition. The panel recommended that a “comprehensive” evaluation be performed which includes medical history, social factors, psychological factors, and a physical examination. This is because PGAD/GPD often has multiple contributors so referral to appropriate clinicians is vital to ensure a well-rounded plan of care. The panel recognized 5 contributing regions that should be assessed including end organ (clitoris, vulva, vestibule, vagina, urethra, bladder, perineum, and perianal area), pelvis/perineum, cauda equina (lumbar and sacral nerve roots), spinal cord, and brain.1
Some patients may have a history of abnormal sensation symptoms, including genital/perineal pain, itch, clitoral pain, vulvar pain, pain with intercourse, interstitial cystitis (painful bladder), bladder or bowel dysfunction, and rectal, leg and/or back pain. The clinician may ask questions, such as masturbation frequency at a young age, specific occurrences like a fall or car accident, certain medication use, family history, and support network. It is possible that certain drugs can have an association with PGAD/GPD, including SSRIs (selective serotonin reuptake inhibitors typically used for depression), trazodone (used for depression and insomnia), and histamine medications so a medication screening may also be performed.1
The healthcare provider should be working to determine which area of the body is creating sensory hyperactivity aka too much sensation. Additionally, hormones may be assessed to determine their possible role in symptoms. For example, menopausal women typically have low testosterone and estradiol levels so these should be assessed to determine if hormone fluctuations are contributing.1
This review specifically recommends referral to a pelvic floor physical therapist for “evaluation of the pelvic floor” and “extra-pelvic regions” like the abdomen, spine, and hips. This is important to determine which soft tissues are potentially contributing or creating sensations associated with PGAD/GPD. Keep in mind that palpation, or touch pressure, from a PT may recreate symptoms even if the touch is at a different body part from your area of concern. For example, touching the abdominal area may create bladder symptoms. Hypertonic, or too much muscle tension, can contribute to pelvic floor dysfunction and possibly contribute to an individual's PGAD/GPD. Hypertonic muscles reduce an individual's ability to relax and lengthen.1 I tend to describe this as walking around with a fist clenched all day. It tends to get more uncomfortable and painful the longer you hold the fist and tends to be very uncomfortable when you initially try to relax those muscles because they are sore from working all day.
During a pelvic floor physical therapy evaluation, a patient would be asked a series of questions and be allowed to share their story, concerns, and goals. The examination would include assessment of the range of motion, strength, coordination, and balance of the trunk, pelvis, hips and legs and any other relevant areas of the body. Finally, with patient permission, an internal pelvic floor muscle examination would be performed where the patient would be asked to contract, relax, and lengthen their pelvic floor and be assessed for strength, endurance, and coordination of these muscles.
This evaluation would be used to determine an appropriate plan of care and treatments. This may consist of manual therapy externally and internally to improve tissue mobility and reduce nervous system hypersensitivity. It may also include other interventions like breath coordination, relaxation techniques, stretches, aerobic activities, and strengthening.1
Other tests that may be performed to further address the contributing factors include anesthesia on the symptomatic organ or region, vascular testing using Doppler ultrasound and arteriograms, and nerve blocks. Possible psychological treatment to assist with PGAD/GPD distress can be helpful as well.1
Overall, a team approach is most recommended to adequately address PGAD/GPD, including pelvic floor physical therapy! My hope is that by spreading the word of the available information regarding PGAD/GPD, those who are experiencing symptoms can be more appropriately treated by healthcare providers. If you feel that you are experiencing unwanted sensations, especially arousal, in the pelvic region, please reach out to a pelvic floor physical therapist to determine if this area is contributing to your symptoms.
Written by Jordan Schmidt, PT, DPT
References
Goldstein I, Komisaruk BR, Pukall CF, et al. International Society for the Study of Women’s Sexual Health (ISSWSH) Review of Epidemiology and Pathophysiology, and a Consensus Nomenclature and Process of Care for the Management of Persistent Genital Arousal Disorder/Genito-Pelvic Dysesthesia (PGAD/GPD). J Sex Med 2021;18:665–697.
