It's the kind of thing nobody talks about, the sort of life-altering, debilitating problem you don't know anything about until you're forced to know: the incredible pain and sexual dysfunction in women brought on by cancer treatment and, in many cases, menopause. The side effects of treatment, as well as lack of estrogen, can have a devastating impact on women, and in many ways the health care system is ill equipped to address sexual health in women unrelated to reproduction.
"I think one of the unfortunate things is our society, for very long, has not been open to talk about sex at all," says Margaret Straub, a physician assistant in the UW Radiation Oncology clinic. "This is just another example where it's shied away from, even within the medical community."
But the conversation is changing, in no small part due to Ellen Barnard and Dr. Myrtle Wilhite. They're partners in life and business who, in 1996, founded A Woman's Touch, the Madison-based sex toy and educational resource shop. It's one of the only sex shops in the country where more than 50% of the customers who walk through the doors have sexual health and wellness-related questions, particularly since the 2002 Women's Health Initiative findings on hormone replacement therapy caused many to stop taking estrogen. Now Barnard and Wilhite have produced their own therapeutic vibrator and informational kit aimed at cancer patients and menopausal women. It's called Vaginal Renewal, and many are crediting it with restoring their sexual health entirely.
"The sweet, sweet things that we get, letters that we get from doctors," says Wilhite. "'Thank you so much for being there. I cannot tell you how you have changed my practice. This has made such a difference in my patients' lives. I had no idea who you were. My patients educated me on how important you are to my practice.' I mean, wow."
"We got a box of chocolates from a doctor in town last winter," says Barnard. "I hear over and over, 'You saved my marriage. I'm having sexual intercourse comfortably for the first time in years. I'm having more pleasure than I've ever had in my entire life.' I have more and more stories from women who have completely recovered their sexual function after radiation, which was not expected before."
Naturally, some in the medical community are skeptical without hard scientific data to back up Wilhite and Barnard's claims. But others are embracing the program wholeheartedly, sending their patients to the shop in droves.
"It's an interesting position to be in here where we listen to consumers, which science would say is anecdotal," says Barnard. "And we have tens of thousands of anecdotal improvements."
'Sex would trigger grief'
Sarah, who asked that her real name not be used, was 52 when she was diagnosed with breast cancer in April 2006. She'd known she had the breast cancer gene mutation, which significantly increases the risk of developing breast and/or ovarian cancer. So she'd had her ovaries preventatively removed six years prior and started on Tamoxifen, a drug used to block breast cancer cell development by preventing estrogen from binding to receptors. But the cancer came anyway. Then, in 2007, she was diagnosed with a second cancer - ovarian cell type uterine - despite having no ovaries.
"The surgeries were extensive," says Sarah, who endured a double mastectomy, breast reconstruction and a hysterectomy. "It's been a little over four years since my last chemotherapy treatment, and we're still adjusting."
Sarah survived, but everything changed. Vaginal radiation and surgery caused burning, scarring, rigidity, dryness and a shortening of the vaginal canal. Adding insult to injury, the 2000 ovary removal had hurled her abruptly into menopause. At first, sex was the furthest thing from Sarah's mind, but she still had to get through those constant pelvic exams. And eventually, she knew it was critical to her marriage and personal well-being to reestablish that vital connection with her husband. But it was incredibly painful, in so many ways.
"You have this tender, tender tissue that's been radiated and cut, and then you have the emotional hang-up of 'when is it going to start to hurt?' And a lot of times sex would trigger grief," says Sarah. "Even once the pain of surgery has gone away, and you grow your hair back and everyone looks at you and says, 'Oh, she's back to her old self!' you're not back to your old self."
Sarah's story may be shocking to read if you are not one of the 71,500 U.S. women diagnosed with gynecologic cancer every year. But for these women, Sarah's side effects are intimately, wretchedly familiar. Treatment for gynecologic cancers - ovarian, uterine, cervical, vaginal and vulvar - may involve radiation, chemotherapy, surgery or a combination thereof, each with its own set of inescapable, life-altering side effects.
For example, a radical hysterectomy removes not only the uterus and cervix, but may also remove a portion of the top of the vagina, which can cause discomfort or pain at the incision site during intercourse because the vagina is now shortened. Removal of ovaries causes surgically induced menopause, and the dryness, thinning and irritation that lack of estrogen may bring. The 2.2 million breast cancer survivors in this country might know a thing or two about lack of estrogen too, due to drugs like Tamoxifen. And then there's radiation.
"With radiation there's a process called stenosis, when the vaginal tissue becomes very rigid, and a second process called agglutination where the tissue actually starts to glue together," says the UW's Straub. "The vagina can end up disappearing in a sense."
That's why in hospitals across America, many gynecological cancer radiation patients are given a vaginal dilator and asked to probe themselves for 60 seconds twice a day to keep the vagina from fusing shut. It's a static, plastic tube, and the process is painful."
After working with patients for years who struggled as Sarah did, Straub wanted to find an alternative solution to the dilator, as well as a general resource - and she did, completely outside the medical system. A local sex shop where, as it turns out, the proprietors were on a parallel journey.
'Not your average porn shop'
Barnard and Wilhite opened A Woman's Touch 16 years ago with one goal in mind: exploring pleasure.
"There was nothing in the Midwest for people to explore healthy, pleasurable sex," says Barnard. "I needed something to do with my life because I was tired of being a social worker. Myrtle joined me as a, 'I need something new to do in life because I'm a doctor who doesn't want to practice medicine in this system.'"
The two opened up shop at 600 Williamson St., featuring sex toys in a safe, clean, brightly lit space. The name A Woman's Touch wasn't meant to exclude men at all - in fact, today 50% of customers are men - but rather to make clear that this was sex from a woman's perspective. Or, as Barnard puts it, "That this was not your average porn shop."
But word quickly got out that Wilhite was a doctor, Barnard was a social worker, and this was a safe place to ask health-related questions. Even providers within the medical community started sending patients in for answers to questions they weren't comfortable with or capable of answering. Though Wilhite and Barnard readily admit they didn't always have the answers, they found they loved researching the questions.
"Why does a woman's loss of a hormone give her a fever? What does pH have to do with yeast infections?" says Wilhite, shaking her head. "I would spend weeks just trying to understand what seemed to be completely esoteric things."
"I would listen to customers, and I see patterns," adds Barnard, who very often finishes Wilhite's sentences. "I'd bring it to Myrtle. We'd talk it through. She would do the research. And then we'd come back with answers and alternatives."
The years and memories run together, as they often do when you try to pinpoint a movement in hindsight. But in the latter part of the 1990s, a handful of key events took place. Around 1997, not long after the shop opened, a breast cancer survivor walked in complaining of vaginal dryness caused by Tamoxifen. This led Wilhite to start looking closer at the physical components of lubricants and why they worked the way they did. She discovered that it was critical for a lubricant to moisturize as well as protectively seal, and that the most popular brands failed to do both. (In 2005 A Woman's Touch became the exclusive master distributor in the U.S. for Liquid Silk, which does both.)
A year or so later another breast cancer survivor - this one higher profile, with connections to the breast cancer community at large - pushed the women further.
"She needed to know, 'How can I be more comfortable in intimacy?'" says Wilhite. "Lubricant is fine, but it's not enough. How can I actually improve skin tone?"
Wilhite began to make connections between blood flow and the body's ability to lubricate itself, and to see that internal massage with the right lubricant seemed to help. Then a friend was diagnosed with cervical cancer, and one night she showed Wilhite and Barnard the hospital-issued dilator she was supposed to use post-radiation.
"They were these rough things that had a gray handle with a white end, and they looked like plungers. They were asking women to put these inside of themselves," says Wilhite. "So any chance they have at penetration later in life relied on whether or not she was using these things that looked just awful."
Wilhite and Barnard wondered if the same combination of the right lubricant and massage would help this friend. It did. And somewhere around that same time, Margaret Straub walked into A Woman's Touch. "That started a years-long collaboration with the Department of Radiation Oncology," says Wilhite.
Straub had a patient who'd begun using a vibrator instead of the static dilator, and both the patient and Straub were amazed at the improvement in the vaginal tissue and her comfort level during pelvic exams. "After that I talked to my supervising physician and I said, you know, this is just incredible," says Straub. "I think we really ought to start looking at the effect vibrators have on the vaginal tissue after the chemo/radiation."
Straub quickly discovered a key problem: Standard-issue vibrators were far too big for post-radiation women, or they were too buzzy, or they weren't long enough. That's when Wilhite and Barnard began designing what didn't yet exist: a very thin, long wand that vibrates along the entire shaft at a frequency that best brings blood flow without tissue trauma. For some women, it's a pathway to a "new normal" in pleasurable sexual health. For others, it simply makes necessary pelvic exams possible.
It took years to develop, but the first Oasis Wand prototype came out of the manufacturing plant in 2009. Oasis is currently in its third generation, available in three sizes. Known as the Vaginal Renewal program, the wand is packaged with a 16-page informational and instructional booklet written by Wilhite and Barnard and paired with a lubricant best suited to the individual customer. The Vaginal Renewal program may be used on its own, but it is also compatible with estrogen therapy and drug interventions, making it "classic complementary medicine" and a non-threat to the existing system. Health care providers believe it works because of its critical combination of the right lubricant, its width and length, the unique frequency of the vibration, the educational materials and Wilhite and Barnard's outreach.
"We were basically able to take over from where estrogen left, once it left, and do the same action locally in the vagina that estrogen does topically now, but more effectively," says Barnard. "Our program, as it turns out, was more effective at rejuvenating the skin and promoting blood flow, which actually led to self-lubrication for more people as well.
"So we started developing this program to meet this need [in post-menopausal women and breast cancer patients], and coincidentally it was working really beautifully for these cervical and uterine and vaginal cancer patients."
'Happiness and joy'
Today, through its health care provider outreach program, A Woman's Touch ships sexual health informational brochures, booklets, and 13,000 lubricant samples a month to nearly 3,000 health care providers across the country. Kayser Permanente, the California-based not-for-profit health care plan serving nine million members, has a PDF of the Woman's Touch catalog scanned directly into its system.
"The store was hugely helpful," says Sarah, the back-to-back cancer survivor. "I can't imagine not having had it as a resource."
When Sarah began experiencing sexual side effects from her cancer treatments, she tried approaching her gynecological oncologist - and she hit a brick wall.
"I would ask him about sex, and he would be literally backing out the door, not wanting to talk about it," says Sarah, suggesting that he wanted to help but was clearly uncomfortable and didn't know how. "And so I know that there are a lot of women who don't get any support."
Sarah, a retired psychotherapist who knew how to advocate for herself, switched doctors and began working with UW Gynecologic Cancer Clinic gyn-onc Ellen Hartenbach and her physician assistant, Lori Seaborne.
"When I started my job in 2003, right away it was obvious that people wanted answers and wanted some help with [sex-related] things," says Seaborne. "Originally I didn't have that much to offer myself because I didn't know all that much about how to improve things for people. And so I sent them to A Woman's Touch quite a bit."
Seaborne's initial ignorance is not at all uncommon, according to Wilhite, who says female sexuality is still "not a priority" in medical school. "Vaginas are drawn incorrectly in medical textbooks, open instead of closed. There's so much about female sexuality that's just wrongly presented. I swear, it's 2012 and they will not dissect the clitoris at the medical school this year. But they will dissect the penis."
But things are changing, both locally and globally. Seaborne has gone from sending her patients to A Woman's Touch to answering their questions herself, and she just enrolled in the University of Michigan's Sexual Health Certificate program in sexuality education and sexuality counseling. She's also part of a newly formed UW team that comprises nurse practitioners, physician assistants, a social worker and a chaplain, offering patients a 90-minute presentation on the sexual impact of cancer treatments. Also on that team is Straub, who frequently brings medical residents to A Woman's Touch in hopes that they'll take the experience out into the world wherever they next land.
"It's baby steps," says Straub. "But I think that there is starting to be movement - that we are realizing [that sexual health is] very important to people and their overall health and well-being."
One of the biggest stumbling blocks is the lack of hard data, but that may also be slowly changing. A randomized, clinically controlled trial is in its early stages in the UW Gynecologic Oncology Department, so far tracking 22 patients to compare the difference between vibrating and non-vibrating dilator therapy. Barnard and Wilhite also have a small group of post-menopausal women willing to participate in a quality-of-life study. By the end of this year they plan to have completed a webinar series aimed at providers, and Wilhite will have a chapter on vaginal dryness in the newest edition of the Integrative Medicine textbook, edited by Dr. David Rakel.
Barnard and Wilhite also both present at conferences when their finances and schedule allow.
The Vaginal Renewal program is entirely self-funded, and the women still have their retail store to run. It's what makes this whole medical outreach thing possible in the first place.
"You're not going to be able to sell this package of stuff - it just doesn't work that way," says Barnard. "It's the education of the health care providers and working through that system. We know that it takes time, and that's okay. We're in it for the long haul."
For people like Sarah, that's welcome news. What a previous chair of an unnamed department of gynecology once told Wilhite was "just a quality-of-life issue" is, to Sarah, a critical component of surviving.
"I think it's a huge deal," she says. "Because it's pleasure. And it's love. And it's - now I'm gonna cry - I mean, sex is something that as a couple you fall back on. You come back to each other. And not having that is a huge gap. So it's a little bit of returning to life. It's like, I'm still here and I still want to experience depths of pleasure and happiness and joy."
Where to go for help
A Woman's Touch
600 Williamson St., 608-250-1928
Vaginal Renewal Clinical Trial at UW
ClinicalTrials.gov identifier: NCT01444911
Contact: Cancer Connect, 800-622-8922, firstname.lastname@example.org