The mean (SD) age of participants was 58 (8) years, with a range of 48 to 75 years (Table ). The most commonly reported urogenital symptom was dryness (66%), followed by soreness (41%), pain/discomfort during sexual intercourse (41%), and itching (36%).
Demographic and Clinical Characteristics of Participants
Five major dimensions of functioning and wellbeing affected by symptoms were identified through analysis— sexual functioning, everyday activities, emotional wellbeing, self-concept/body image, and interpersonal relations (Table ). With the exception of the everyday activities dimension, which did not emerge in discussion among Black women under 60 years of age, all dimensions featured prominently in discussion in all six focus groups.
Frequency of Participant Responses Regarding the Impact of Urogenital Symptoms on Dimensions of Functioning and Wellbeing, by Focus Groupa
Participants from all age, racial/ethnic, and language groups described significant problems with sexual activity as a result of their symptoms (Box 2). Some women who had previously enjoyed active, satisfying sexual lives reported that their symptoms had caused them to lose interest in sex: “[I]n the last year I have only had sex twice, and both times it was extremely painful, I can remember screaming in pain.... I always loved sex, but... that is enough to disenchant me.... Because it’s too painful.” Some women who remained sexually active complained that their symptoms had transformed vaginal intercourse into a primarily painful experience: “And sometimes you do it anyways, putting up with the discomfort, the pain, but you wish that the moment would pass... because you can’t stand it!... Instead of having pleasure, instead of satisfaction, what you have is anguish, for it to be over.”
Participants who were involved in long-term sexual relationships expressed concern about being unable to be responsive to their partners as a result of their symptoms: “And I also feel very guilty vis-à-vis my husband.... He likes to make love all the time, but... I have been avoiding it... because it’s uncomfortable, it’s painful... and I don’t want to make him aware that I have been avoiding it.” Participants described furtively applying vaginal lubricants or trying to disguise their discomfort to prevent their partners from becoming aware of their problem. Some participants also reported that their problems with pain were exacerbated by the sexual problems of their partners. For example, several women complained that their need to apply lubricants made it difficult for them to respond quickly on those occasions that their partners were able to overcome their erectile dysfunction: “He’s at the age where, if it’s working, we’re supposed to drop everything.... [I]nevitably when the mood hits him, I’m not ready with the AstroGlide, or it’s far away, and I’m going, ‘oh, please... give me a little notice.’”
Among women who were not currently involved in a sexual relationship, some indicated that they would be reluctant to enter into a new relationship due to fear of pain during sex: “[M]y boyfriend is 15 years older than I am, and... he’s in assisted living now... so it isn’t a problem at this moment. But I worry, my God, if something happens to [him], and should I find another boyfriend...would I say, “’No, I can’t do it.’?” Even when women were capable of feeling desire for a new partner, some said they were reluctant to progress to intercourse due to fear of pain: “[S]ometimes I go out on a date, and you know, you could consider me a teaser, ‘cause I still get the build up and the desire to want to have sex, but I am not going to put myself through the discomfort that I think I would suffer if I had it.”
Although some participants indicated that their symptoms were problematic only during sex, others said their symptoms interfered with other activities of daily living (Box 2). Some reported being unable to sit for prolonged periods on public transportation, go for walks, or ride a bicycle because of dryness/irritation. Participants also described being unable to go out in public due to a frequent need to retire to a bathroom to scratch or wipe. Furthermore, some participants complained that their choice of clothing was limited by their symptoms, as they could not wear pantyhose or form-fitting clothing that might irritate the urogenital area.
Women who experienced symptoms specifically during urination described being reluctant to use the toilet because of their symptoms: “Well, when I had the dryness, I didn’t want to drink, because I dreaded the thought of having to urinate, because I knew it was going to burn.... There was a point there where I dreaded to have to drink.... I’d hold it, you know, because it burned so bad.” Women also described elaborate rituals of washing and wiping in order to relieve their irritation with urination.
Participants varied in the emotions evoked by their symptoms, with some reporting extreme depression and frustration, and others being only moderately bothered by this problem (Box 2). Some women who had not previously heard of urogenital atrophy indicated that their lack of prior knowledge increased their emotional distress upon developing symptoms: “Once I... resumed my sexual activity... I realized that I [had] this problem, and it was extremely embarrassing and frightening... I’d gone through so many things, and I’m thinking... I’m going to be able to enjoy sex... but then... I can’t even have sex, and it was frightening, and it was disillusioning, and it was frustrating, and I was really angry.”
Some women reported coping with their symptoms by trying to ignore their impact on their everyday lives: “I don’t want to admit that there’s dryness, it’s kind of like, “Oh no, one more thing,” and I tend to ignore it.... I want to think that I’m not dry, that those juices are still flowing....” Others complained that even when they were successful in finding ways of relieving their symptoms, they felt burdened by constantly having to think about this problem: “I’ve never been aware of my vagina at any other time. Suddenly there she is! And I’d rather she’d be gone most of the time....”
Self-concept and Body Image
In all six focus groups, participants tended to describe their symptoms as a sign that they were getting old or that their body was deteriorating (Box 2). As a result, their feelings about their symptoms often reflected their anxieties and concerns about growing old. Several women expressed fear or concern that they were becoming “less of a woman” as a result of these and other signs of menopause and aging: “You know, what kind of scared me was, there’s a girlfriend of mine who’s ten years older than me.... She’s like, ‘Oh, well, you know, as women age, we become more like men, because [we] don’t have estrogen,’ and, really, I feel myself getting horrified.... I felt like, ‘Oh my God, I don’t want to get old.’” Others argued that “being feminine has nothing to do with aging of the vaginal area,” and insisted that their symptoms, although bothersome, had not detracted from their sense of womanhood. Several women complained that their negative feelings about their symptoms were exacerbated by social pressure to appear or act younger than their age, including pressure to maintain frequent sexual activity: “I am thinking if we weren’t faced with this relentless barrage of ads... and TV shows that are... only about sex and mean jokes about women who don’t have sex, that we could be happy with our place in society as aging women.”
Many participants were reluctant to discuss their urogenital symptoms with their husbands or partners because they were afraid of being perceived as “too old” or “not good enough” or being ridiculed for having this problem (Box 2). Some indicated that they were also uncomfortable with discussing their symptoms with female friends or relatives, even when they were accustomed to discussing other types of menopausal symptoms: “I have four or five very, very close friends.... You talk about the flashes, you talk about the fact that, OK, maybe you haven’t had sexual activity in a couple of weeks.... But as far as [dryness] is concerned, we never talk about that.” Because they had not discussed these symptoms with others, some participants said that they mistakenly believed that they alone had this problem: “When I got all of this, I was ignorant. I didn’t know that I would get dryness, itching, irritations.... I didn’t know! And I put up with it for a long time, until very recently when I told my doctor.... Could it just be me, could it be that it’s not everyone?”
Participants also reported being reluctant to discuss their symptoms with health care providers, even when their symptoms significantly affected their quality of life: “I started to get these things like dryness, itchiness, irritation that was very bothersome. Sometimes when I scratched myself, even with a towel, I would bleed. But I was scared. Even with all that I wasn’t brave enough to tell my doctor.” Some women indicated that they were not aware that their symptoms could be caused by a medical problem until they were finally evaluated by a doctor: “I felt really isolated for a long time, because I didn’t understand that this could happen. And the first time I became aware of it, I was having an exam at the doctor’s office.... [T]hey’re looking in there, and she said, ‘You see that, that’s urogenital atrophy,’ and I went, ‘Oh!’”
Beliefs About Etiology
Some participants attributed their symptoms to modifiable behaviors such as physical exercise or fluid intake, while others regarded their symptoms to be an unavoidable consequence of aging or menopause: “You get to be 65, your whole body dries up.... [M]y ears is dry, my nose is dry, my eyes is dry, my everything is dry.” Women also expressed concerns that their symptoms were caused or exacerbated by their prior use of hormone-based therapies: “So I also felt a little punished.... Well, if you had been smarter... not taken birth control pills, maybe you wouldn’t have this problem right now...” Other women believed that they had developed urogenital dryness as a side effect of other medications: “And when we get older we do take a lot of medicine.... Anybody taking some kind of pill even if it’s only an aspirin a day... that aspirin could be sucking up all the water in the body.”
Women also expressed conflicting views about the role of sexual activity in the etiology of their symptoms, with some believing that women who remained sexually active were less likely to be symptomatic, and others believing that sexual activity could worsen symptoms. Several expressed concern that their symptoms resulted from contracting a sexually transmitted disease: “Yes, I thought, I would say, ‘Who knows where this man has gone and who knows what he’s given me,’ because after having sex with him, I would feel that terrible burning....” Participants also expressed concern that they had developed symptoms as a result of poor hygiene: “It’s just like, are you cleaning up down there? Or, you know, is it dirty in there? So... you’re putting water in the sink, and putting soap in there, and you’re scrubbing and scrubbing.”
Participants described a variety of approaches to managing their symptoms, including hormone therapies, non-hormonal lubricants and moisturizers, alternative/complementary therapies, and washing and soaking techniques. Concern about the potential side effects of estrogen-based therapies emerged in all groups: “I just don’t like to put all that stuff in my body, because... five or six years from now, you’ve got vaginal cancer or something.” However, some participants argued that the relief they obtained with these therapies was worth the risks: “It’s been about two years [since] I was taken off the hormone therapy, and I was getting up every night, at least three times... and dealing with dryness. So I did go back to the doctor and ask to be put back on it... And at my age, it’s more important about the quality of my life than how long I live.” Frustration about the inadequacy of existing treatments emerged in all focus groups, with women complaining that fewer treatments were available for problems related to women’s sexual function than men’s: “[W]hen men begin to have difficulties, well here is Viagra... like the perfect solution... not quite realizing that maybe there isn’t as perfect a solution as Viagra to our problem.”