Story Of A Sexual Syndrome: New Clues, Possible Fix For Some With Relentless Arousal

Jeannie Allen first spoke about her condition a dozen years ago, and now her online support forum on Persistent Genital Arousal Disorder has hundreds of members. (Courtesy)

Jeannie Allen first spoke publicly about her condition a dozen years ago, and now her online support forum on Persistent Genital Arousal Disorder has hundreds of members. (Courtesy)

When last I spoke with Jeannie Allen a dozen years ago, her relentless pelvic torment had just been newly labeled as a rare but bona-fide condition affecting mainly older women: Persistent Sexual Arousal Syndrome.

Please, no quips about middle-aged women feeling like typical teenage boys. It’s no joke. More of a nightmare: genital congestion and pulsation, unwanted and wholly apart from sexual interest, that never subsides, no matter how many orgasms. It’s not nymphomania or sex addiction because it’s not about desire. It’s better compared to priapism in men: unwanted, often painful, prolonged erections.

One snickering doctor told Allen she was every man’s dream. “I wanted to punch him,” she recalled in 2003. “I’m suffering here, and he’s laughing, ‘Hardy-har-har.’ So I looked him in the face and said, ‘How would you like to walk around on the verge of orgasm every second?’ And he shut up.”

When she went public back then — “Sexual Syndrome That Takes Joy Out Of Life” — Allen was a lone voice, one of just a handful of women known to have the syndrome, and the only one willing to be public about it (under her pen name, Jean Lund).

She’s not so alone these days. The syndrome, no longer seeming so rare, has been featured on “20/20” and “The Doctors.” Estimates of total prevalence range into the thousands. There are hundreds of women — and a few men — on her online support forum for what is now called PGAD — Persistent Genital Arousal Disorder.

And the existence of that network has helped spur research into the disorder. Most recently, a paper in a leading gynecology journal this week reports that in some cases, spinal cysts may cause the syndrome, and so spinal surgery may help.

“It’s not imaginary.”

– Dr. Barry Komisaruk

There’s likely no simple solution for the disorder, Allen said this week. “It’s not the same for everyone, and I really do not believe it’s one thing that’s causing it,” she said. “I think it’s a cocktail of things and different for every person.”

But research is beginning to cast light on possible biological causes — and possible treatments. It’s also offering new backing for patients who reject the “It’s all in your head” diagnosis.

The moral here may be, “Doctors should believe what their patients tell them. First of all, and before assuming that it’s a psychological problem, make sure that any physical problem is ruled out,” said Dr. Barry Komisaruk, distinguished professor of psychology at Rutgers.

He has scanned the brains of patients with the syndrome and found activation patterns that mean “it’s not imaginary.”

Almost every woman with the syndrome he’s met has been prescribed antidepressants, Komisaruk added.

“Well, if you had a thorn in your toe for 10 years causing you continuous pain, you’d be depressed and frustrated, and an antidepressant would not exactly be the treatment of choice,” he said.

This week’s research also suggests that doctors should consider checking for cysts that could be causing the disorder in some patients, Dr. Frank Feigenbaum, the paper’s lead author, said.

“The take-home is that a gynecologic practitioner should think about getting an MRI in the lumbar spine in the patient who presents with Persistent Genital Arousal Disorder,” Feigenbaum said, “particularly in the setting of other symptoms of compression of the sacral nerve roots.”

Brain Scans and Obscure Cysts

Sacral nerve roots? Yes, the research suggests that the disorder can arise from problems with the sensory nerves that run from the genitals up to the brain. The sacrum, a bone at the base of the spine just above the tailbone, could be key here. Continue reading


Docs In Training Confide Their Feelings On Performing Abortions

Opponents and supporters of an abortion bill hold signs outside the Texas Capitol on July 9 in Austin. (Eric Gay/AP)

Opponents and supporters of an abortion bill hold signs outside the Texas Capitol July 9 in Austin. (Eric Gay/AP)

Abortion can be hard for the patient. But it can also cause turmoil for the doctor performing the procedure.

Janet Singer, a nurse midwife on the faculty of Brown University’s obstetrics-gynecology residency program, found herself acting as a confidant in many discussions with residents about abortion.

“Over the years, when a resident felt confused, overwhelmed or thrilled about something to do with abortion care, they often came to me to discuss it,” she says.

Tricky questions continued to arise: Where does life actually begin? How do doctors’ personal beliefs play out in their clinical care? And, what’s really best for mothers?



Singer thought the general public would benefit from hearing more about the complexities of the young doctors’ experiences. So she asked four residents to write about their feelings about abortion training and services, or as one resident characterized it: “one of the most life-changing interventions we can offer.”

These personal stories are published in the July issue of the Journal of Obstetrics and Gynecology, headlined: “Four Residents’ Narratives on Abortion Training: A Residency Climate of Reflection, Support, and Mutual Respect.”

I asked Singer to offer a bit more background on the project, and here, edited, is her response, followed by some excerpts from the residents’ narratives:

Janet Singer: The abortion debate in the U.S. is so divisive, making everything seem black and white; but the real life experiences of doctors and women are much more complex. I am a nurse midwife and though personally committed to increasing access to abortion services, I believe that abortion is not a black and white issue. I speak openly about my personal beliefs with the obstetric residents I work with.

My thinking about the grey areas surrounding abortion care are the result of many conversations with colleagues and residents. One came to me overwhelmed on a day when she had done a late-term abortion and then been called to an emergency C-section for a fetus/baby just a week further along.

She needed to talk about how overwhelming it felt to try to decide where the cusp of life was, why it was OK to take one fetus/baby out of the womb so it wouldn’t live and one out so it might.  Continue reading

Doctor: You Should Not Need Prescription To Treat Urinary Tract Infection

Cranberry juice is often recommended to help with UTIs. (Woo Woo/Flickr Creative Commons)

Cranberry juice is often recommended to help with UTIs. (Woo Woo/Flickr Creative Commons)

My friend was looking peaked and pained the other day. Today, she was vastly better.

“UTI,” she said, and I nodded knowingly. Urinary tract infections are so common that up to half of all women get them at some point. There are many wonderful things about being a woman; cystitis is not one of them.

It was no big deal. She called her doctor and the prescription was phoned over to her pharmacy. But a recent editorial in the British medical journal BMJ argues for an even simpler solution: She should have been able to just diagnose herself and pick up the treatment over the counter.

Dr. Kyle Knox, a general practitioner, writes that letting women treat UTIs without a prescription could cut 3 million unnecessary visits to the doctor each year in the United Kingdom. From the BMJ press release:

Acute uncomplicated urinary tract infections (AUUTIs) such as cystitis are the most common bacterial infections in women. Cystitis affects around half of women at least once in their lifetime and is coded as the reason for 1% of the 300 million GP consultations held annually in the UK.

Management of cystitis is straightforward – a short course of the antibiotic nitrofurantoin and symptoms usually start to improve after a day or two.

“Therefore, in an era of ready access to information, increasing patient autonomy, and overstretched primary care services, it would seem a good idea for women to be able to access safe and effective treatment without the costs and delays associated with consulting a clinician to obtain a prescription,” suggests Knox. Continue reading

Lawsuits Move Forward, Brought By Women Hurt By Vaginal Mesh

With all of the complications related to vaginal mesh — which we reported on several years ago — the influential doctors group the American College of Obstetricians and Gynecologists recently issued an article, “What Is New in the Use of Mesh in Vaginal Surgery?” offering data published in the past year on the topic.

One notable point about the implants, used to lift sagging pelvic organs back into place, is that removing a vaginal mesh implant that has been causing problems doesn’t always fix the problems. The article, by John R. Fischer, M.D. of the Department of Obstetrics and Gynecology at the Uniformed Services University of the Health Sciences in Bethesda, Maryland, says:

Complications from placement of permanent synthetic mesh for vaginal prolapse repair are well-documented, but there is little to guide physicians regarding outcomes after surgical removal of trans-vaginal mesh. This is a retrospective review of patients who underwent excision of trans-vaginal mesh owing to complications. The most common issues were pelvic and vaginal pain, mesh exposure, and a bulge sensation…After removal, 51% of patients reported complete resolution of their symptoms, with mesh exposure mostly likely to respond to treatment. Of those who presented with pain, 51% reported persistent pain after excision.

Fischer concludes: “…of the many symptoms that are treated with mesh excision, persistent pain may be the most difficult. Patients with a history of chronic pain may not be ideal candidates for the use of synthetic mesh.”

Dr. Peter Rosenblatt, Director of Urogynecology at Mount Auburn Hospital in Cambridge, Mass., says that use of the mesh implants has, indeed, gone down. In an email, he writes:

There has certainly been a decline in the use of transvaginal mesh to treat prolapse, although many pelvic reconstructive surgeons still offer this treatment to patients who are at high risk of failure from traditional surgical repair of pelvic organ prolapse. The FDA safety update in 2011 raised concerns that some of the complications that are unique to these procedures, especially erosion (or more accurately “exposure”) of the mesh through the vaginal wall, are “not rare” and that physicians needed to counsel their patients about the potential risks of using mesh. Surgeons and their patients should weigh these risks versus the potential benefits of transvaginal mesh, which includes improved anatomic success rates. There is also no question that the ubiquitous and never-ending television ads by law firms have instilled a real sense of fear and apprehension among women who are suffering with these problems.

Meanwhile, myriad lawsuits brought by women who say they were harmed by the mesh implants, made by a Ethicon, a subsidiary of the drug giant Johnson & Johnson, continue.

Earlier this month, a California jury returned a $5.7 million verdict in favor of the plaintiff in a vaginal mesh case, according to a local TV news report.

And a West Virginia jury last year awarded $3.27 million to a woman who underwent surgery to remove a vaginal mesh device, reports the National Law Journal. Continue reading

Consumer Advocates: FDA’s Action On Vaginal Mesh ‘Too Little Too Late’

Public Citizen, the consumer advocacy group that years ago called for tighter restrictions on a type of surgical mesh used to treat pelvic organ prolapse, called the FDA’s latest proposal to increase oversight on the products “troubling both in its scope and timing.”

The group said in a statement that the government agency waited too long to act and that its recommendations may still put women at risk.

Here’s the full statement from Public Citizen’s Health Research Group Director Michael Carome on the FDA’s latest proposal:

Public Citizen welcomes…[the] long-overdue issuance of a proposed order by the U.S. Food and Drug Administration (FDA) that, if finalized, would reclassify surgical mesh for transvaginal pelvic repair organ prolapse (POP) from a moderate-risk device (class II) to a high-risk device (class III). This would subject these devices to a more rigorous approval process that would require manufacturers to submit to the agency premarket approval applications with evidence from clinical trials that the devices are safe and effective. Such an order would implement one of three actions requested in Public Citizen’s August 25, 2011, petition to the FDA, which also requested an immediate ban and recall of all such devices currently on the market.

(wikimedia commons)

(wikimedia commons)

However, the FDA’s action today is troubling both in its scope and timing. First, the agency acknowledged that the safety and effectiveness of surgical mesh for transvaginal repair of POP has not been established and that these devices frequently cause serious adverse events. But the agency has taken no action to immediately remove currently available products from the market, as we requested in our petition, or to warn physicians and patients to stop using these devices.

Second, it is disturbing that the agency has taken so long to begin the regulatory process to reclassify surgical mesh for transvaginal repair of POP Continue reading

FDA Proposes New Restrictions To Address ‘Health Risks’ Of Vaginal Mesh

The U.S. Food and Drug Administration today proposed strict new regulations to address the “clear risks” associated with surgical mesh used to treat vaginal prolapse in women.

Specifically, federal regulators want to reclassify surgical mesh as a “high-risk” medical device (it’s now in the “moderate-risk” category) and also impose more requirements on manufacturers in which they must demonstrate that the device is safe and effective.

The risks and health problems related to this type of surgical mesh, which we’ve detailed here, include infections and nerve damage that can occur when the material erodes through the vaginal lining, as well as excruciating pain, the inability to sit down or urinate without a catheter, multiple hospitalizations and an end to a women’s sex life.

Here’s the full FDA news release:

The U.S. Food and Drug Administration today issued two proposed orders to address the health risks associated with surgical mesh used for transvaginal repair of pelvic organ prolapse (POP). If finalized, the orders would reclassify surgical mesh for transvaginal POP from a moderate-risk device (class II) to a high-risk device (class III) and require manufacturers to submit a premarket approval (PMA) application for the agency to evaluate safety and effectiveness.

POP occurs when the internal structures that support the pelvic organs such as the bladder, uterus and bowel, become so weak, stretched, or broken that the organs drop from their normal position and bulge (prolapse) into the vagina. While not a life-threatening condition, women with POP often experience pelvic discomfort, disruption of their sexual, urinary, and defecatory functions, and an overall reduction in their quality of life.

“The FDA has identified clear risks associated with surgical mesh for the transvaginal repair of pelvic organ prolapse and is now proposing to address those risks for more safe and effective products,” said William Maisel, M.D., M.P.H., deputy director of science and chief scientist at the FDA’s Center for Devices and Radiological Health. “If these proposals are finalized, we will require manufacturers to provide premarket clinical data to demonstrate a reasonable assurance of safety and effectiveness for surgical mesh used to treat transvaginal POP repair.” Continue reading

Why The IUD Is On The Rise (And You Might Want One)

(Above: A 7-minute IUD show-and-tell by a leading expert, Dr. Eve Espey)

Full disclosure: I had an intra-uterine device implanted soon after my second child was born, and in my own experience, using an IUD for birth control is something like what Churchill said about democracy: It’s the worst system around — except for all the other ones.

My first few months with a Mirena — an IUD that emits tiny levels of the hormone levonorgestrel — were rife with unpredictable spotting. That certainly got very old very fast. But then the spotting ended, and my periods blessedly all but disappeared, a common Mirena effect. It’s been nearly seven years now, and I’ve been both problem- and pregnancy-free. I even re-upped for a second device when the first one hit its five-year limit.

So that’s my bias when I report that in recent weeks, I’ve noted a striking convergence of signs pointing to a new era of far greater popularity for IUDs. There’s even talk of an IUD “renaissance” — once all but unthinkable after the debacle of a 1970s device called the Dalkon Shield.

The "Mirena" hormone-releasing IUD

In the not-too-distant future, getting an IUD, which costs several hundred dollars, will be universally covered and co-pay-free under new federal insurance rules. The latest numbers suggest IUD use among American women has risen dramatically in the last decade. And the IUD’s safety record is looking so good that recent research finds that the devices can even be implanted right after an abortion or a birth.

“The message is finally getting out there that IUDs are a great option — that they’re highly effective, that they’re long-acting, and they provide reversible, highly effective contraception with just one act,” said Dr. Alisa Goldberg, director of clinical research and training at the Planned Parenthood League of Massachusetts. (That “one act” is having the IUD implanted, a quick office procedure.)

Among the first 2500 women who enrolled in the study, 56% — that’s right, more than half — chose to get IUDs.

“And the message is finally getting out there that the old days — the days of the Dalkon Shield — are long behind us,” Alisa, who’s also director of the division of family planning at Brigham and Women’s Hospital, said. “There are increasing amounts of data showing the safety, the efficacy and the increasing popularity of these methods.”

In a country where nearly half of pregnancies are accidental, “This could have a huge impact on public health,” she said.

No, she’s not in the pay of the IUD makers. She sounds just like many other evidence-based experts on contraception who have been pushing for greater IUD use for years. In fact, it was because I’d read some of their research that I opted for an IUD seven years ago, despite a lingering sense of past disaster.

Now the factors in the IUD’s favor are visibly multiplying. Most recently, new federal rules announced earlier this week, requiring insurers to cover women’s contraception without co-pays, will remove the upfront costs that put many women off IUDs. Continue reading

Special Report: My Quest For Pain-Free Sex, Part II

“Does your pain occur with ‘deep penetration’ or is it more like a ‘ring of fire,’ at the opening?”

This is the kind of question you get upon entering the world of pelvic floor physical therapy. That is, if you’re lucky enough to find out that the therapy even exists.

Recently, I wrote about my experience suffering from pain during sex, and how I found relief from pelvic floor physical therapy, a little-known treatment that is often overlooked by doctors. I got scores of comments from other women with similar problems — some who have lived with their pain for years. Like me, they’d never heard of pelvic floor PT, and they were thrilled to learn that there is an effective alternative to quietly enduring their extreme, often secret, discomfort.

Perhaps pelvic floor therapy might soon gain credibility: last week, a local physical therapist, Jessica McKinney, used my story as part of her Grand Rounds at Massachusetts General Hospital. She spoke to about 16 obstetrician and gynecology residents and medical students. They listened intently to her hour-long talk (edited and posted below) and when it was done, one young man walked over and asked, “What’s a Kegel?”

Pelvic floor PT is far more than Kegel exercises. So, in the spirit of enlightenment, here are a few more details (maybe too many) about my sessions at the Brigham and Women’s Hospital Department of Rehabilitation Services:

The First Visit

After my physical therapist, Rachael Maiocco, talked about the anatomy of the pelvis and relevant organs, she asked many questions about the nature of my pain. Was it deep or superficial? How intense on a 1-10 scale? Continue reading