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Advocacy and Research

In Memory of Gretchen Molannen

By Riva Preil

On December 1, 2012, Gretchen Molannen ended her life tragically after years of suffering from Persistent Genital Arousal Disorder (PGAD). PGAD is a disorder where the individual experiences prolonged and intense periods of genital arousal. The symptoms may be relieved temporarily by stimulating an orgasm, however the symptoms usually return within several hours. Certain situations may trigger the symptoms, including riding in a car or cell phone vibration. For many, the discomfort associated with increased arousal progresses to pain, and those who suffer from PGAD often refrain from intercourse due to pain and/or shame. In addition, this condition interferes with many activities of daily living, such as attending to work related tasks and interpersonal relationships.

Unfortunately, researchers have limited information regarding the cause and treatment for PGAD. To date, it seems that there is a connection between PGAD and sensory nerve dysfunction. PGAD is also associated with pudendal nerve entrapments; nerve blocks have been used to treat PGAD with limited success. In some cases, PGAD may be related to pelvic arterial-venous malformation, in which case surgical intervention is indicated to correct the underlying issue. Antidepressants, antiandrogenic medications, and anesthetic gels have been prescribed to help alleviate the discomfort. However, “one of the problems with PGAD is a lack of knowledge. Many doctors don’t know about it and it’s not even recognized by the medical community as an official condition. Therefore any procedures that may potentially reduce the problems are not covered by insurance because there’s no code for PGAD. What’s more, it’s unknown how many women have the condition since many choose not to talk about it out of embarrassment†(quoted from the Ryan Jaslow’s article in CBS News; see link above). Furthermore, people experiencing PGAD may very likely benefit from pelvic floor physical therapy. PGAD can increase sensory and motor nerve sensitivity, and it can create pelvic floor muscle tightness. This tightness can pull on the genital region and increase the symptoms of arousal and pain. Furthermore, the tightness can restrict and irritate the nerves in the pelvic region which results in hypersensitivity to the surrounding organs and in the general region. Pelvic floor physical therapy can help treat the musculoskeletal and nerve restrictions associate with PGAD.

Gretchen was courageous by sharing her story with the world. May her tragic story raise public awareness regarding the debilitating nature of this terrible disease thus spurring further research into appropriate treatment methods. May she rest in peace.

—FAQ

Frequently Asked Questions

Pelvic Floor Disorders and Treatment

What is pelvic floor dysfunction and why does it happen?

Pelvic floor dysfunction is extremely common and occurs when the muscles, tissues, or nerves of the pelvic floor are weakened, tightened, or injured by trauma, chronic strain, or overuse. Pelvic floor disorders can result from traumatic injury such as a fall, from sporting activity, surgery, or childbirth. They can also happen from more chronic issues, such as infection or chronic inflammation such as endometriosis. Pelvic floor disorders can be a consequence of poor alignment or posture, overuse, or improper movement. The pelvic floor muscles surround the urethra, rectum, vagina and prostate; therefore, if there is a dysfunction in these muscles it can result in urinary, bowel, or sexual dysfunction in people of all ages.

Who should I see to get a proper diagnosis?

Many healthcare providers don’t assess – or don’t know how to assess – the pelvic floor muscles and nerves, so it’s important to get a proper diagnosis from a practitioner who specializes in pelvic floor dysfunction and pelvic pain. Too often patients tell us that they’ve been to 10 different doctors and healthcare providers and their symptoms have not improved, or have worsened. Find a specialist right away and get on the path to healing as quickly as possible.

Why do healthcare providers miss (or misdiagnose) pelvic floor dysfunction?

Long story short, the medical practice is divided into areas of the body: Urology. Orthopedics. Gynecology. But the body itself doesn’t have walls; every system interacts with everything else. Sometimes providers are so laser-focused on what they treat that they miss the whole picture. 

As more and more research emphasizes the importance of physical therapy as part of a complete treatment regimen, more and more physicians are learning how to recognize and treat pelvic floor disorder. In the meantime, if you’re not getting relief from your current treatment, make an appointment with a pelvic floor specialist to learn more.

How does pelvic floor dysfunction affect sex?

Pelvic floor muscles have a huge impact on sex. Muscles that are shortened or tight and are unable to elongate will not allow for good blood flow into the genitals. This can result in pain, weaker erections, diminished sensation, inability to orgasm, and even decreased lubrication. Pelvic floor PT can help with these issues by enhancing blood flow and improving muscle function. 

How can pelvic floor dysfunction cause bloating?

Pelvic floor dysfunction, a condition characterized by the inability to correctly relax and coordinate pelvic floor muscles, can significantly contribute to bloating due to its impact on gastrointestinal functions. When these muscles are not functioning properly, it can impact the ease of emptying and make it difficult for your body to pass stool and gas through the intestines. This obstruction leads to an accumulation of waste and gas in the gastrointestinal tract, causing bloating and abdominal discomfort.

Is it true there’s internal massage?

There can be. We do perform internal soft tissue mobilization of the pelvic muscles that are inside your pelvis and are accessible only through the vagina or rectum. We never do internal treatment without your consent and understanding.

What makes someone a pelvic floor PT vs a regular PT?

All pelvic PTs get additional training in pelvic floor internal treatment through continuing education and at our clinic. 

We pride ourselves on the level of training we provide, not just at the beginning but throughout the time our therapists spend at Beyond Basics. We know that learning is a life-long process.  We also provide additional training in physiology of the GI system and urinary system as well as sexual health and function and nutritional training. Most PT programs and schools do not provide the depth and breadth of knowledge that we provide all our PTs at Beyond Basics.

Get help now from a pelvic floor therapist.

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