Attitudes towards parenthood element of the value of parenthood

element of knowledge about condition effects on pregnancy element of knowledge about genetic issues_____________

The discussion in this section will cover the dimensions and elements identified in the interview data that related to sexual interest and attitudes towards marriage and parenthood. A sexual interest experience, commonly beginning during the adolescent years, is 'dating'.

The element o f *dating '

'Dating' is a complex collection of activities that include the development of increasingly intimate relationships and the experiences of sexual behaviours (Swensen 1972). Although dating does occur in the teenage years between same-sexed pairs, and this issue is discussed in a later section, the initial discussion as an introduction to the sensitive areas of sexual experience was based on heterosexual relationships. Dating - defined here as arranged meetings with one person of the opposite sex with the understanding that sexual contact.

however limited, might occur- usually begins in the early teen years. For example, in their in-depth qualitative study of 65 young newly married couples, Mansfield and Collard (1988) reported that the recalled mean age for start of dating was 14 years. In the present study, the recall by the women of their age when beginning dating was not significantly different for the two groups (t=1.629, df = 34 p >0.05, 2-tailed) with the mean age for the combined groups being 16.4 years. This is older than that of Mansfield and Collard's sample, and compares with the results of Money and Schwartz (1977) who also found their group of CAH girls to be late in starting to date. The similarity between the diabetic and the CAH groups suggests that having a chronic medical condition rather than specifically having CAH, may have an influence on the age at which dating begins.

The element o f current perception o f levels o f sexual interest

Dividing the sample at the mean recalled age of the start of dating for the groups combined, resulted in differences in the women's statements about their current interest in sexual activities. 'Late-daters' (recall of dating later than the total sample mean) in both groups, and 'early-daters' (recall of dating earlier than the total sample mean) in the diabetic group, saw their current interest in sexual activities as 'average' compared to their fiiends and acquaintances without a chronic condition. By contrast, early-dating CAH women described themselves as currently less interested in sexual activities than their normal peer group. This reported lack of interest is reflected in the fact that none of the eight (42 per cent) early-dating CAH women had boy fiiends or partners at the time of interview. In contrast, eight (47 per cent) of women with diabetes had dated

early and six of the eight (75 per cent) had steady partners and the remaining two, boy friends. This represented a very different pattern for the two groups. Almost half of late-daters in both groups reported having partners at the time of interview.

These data suggest that the CAH women who had dated early may have a particular pattern of difficulties in this area, and it is of importance to understand why this might be so. Dating is an anxiety provoking activity for all women (Kelly 1984). The early physical maturity and development of the secondary sexual characteristics frequently seen in CAH girls may have been interpreted by themselves and by the young males in their environment as signals of a readiness for sexual experience. However, the genital abnormalities, the experience of surgery and the general difficulties in open communication may have made the young women less able to deal with the intimate behaviours required during dating. These early-dating CAH women described themselves as ’loners’ and ’shy’, and the anxieties arising from the perceived need to be intimate may have resulted in the curtailment and avoidance of intimate heterosexual relationships. Although late dating women with CAH may have experienced similar physical development patterns, the later start in dating may have allowed development of skills that enabled greater control in sexual situations and therefore less anxiety. Early dating women with diabetes would not have the same anxieties about genital normality and therefore would have different experiences.

The data provided many examples from those who were early-daters of later reticence to engage in intimate relationships. The following quotes from early- dating women with CAH clearly exemplify this point;

1 did [end the relationship], it was getting too involved. I wasn't interested in sex. (C l5)

I got cold fe et 1 think, I got out. (C08)

After the first, I never really had a date fo r years. I liked talking but they were only interested in sex. (€09)

None [boy friends] at present. Sometimes I fe el lucky not to have anyone who's moaning, but 1 see people and I think it would be nice to have that experience, but most o f the time it doesn't bother me. I get frightened getting too involved, I get worried and back off. (€33)

The women with diabetes remembered such curtailment decisions as being less one-sided with some having been taken by themselves, some by the boys, and some jointly:

He did, he found someone elsef(D04)

I did, it got too serious, he wanted it to be sexual and 1 wasn't ready. (D08)

We drifted apart, it was mutual. (D14)

The ability to establish and maintain relationships with boy friends is clearly important in providing opportunities for engaging in sexual behaviours. Further elements comprising the dimension of sexual interest are given in Table 13 and are discussed below.

The element o f masturbation

Engaging in masturbatory behaviour may also be an indication of sexual interest, and the data suggested that the women with CAH were inexperienced in this area. Less than half of the CAH group had engaged in this activity; those who

had had started in their early teens. By comparison, just over three quarters of the diabetic women had masturbated since their early teens and this approximates to normative levels as reported by Hite (1976) and Kinsey, Pomeroy, Martin and Bebhard (1953). An important finding was that the CAH women commonly spoke about masturbation as a necessary medical procedure, rather than primarily a sexual activity:

[masturbation was necessary] to keep it [the vagina] open. 1 used to be nervous o f it closing up. (C04)

I have done so, everybody does, I used to have to, I would explore- what had [the surgeons] done ?(C52)

Even now. I've never thought about it fo r enjoyment. (C41)

The element o f sexual experiences with a partner

Sexual experience was further examined by asking the women which of a number of specific sexual behaviours with partners they had ever experienced. The behaviours were of three related classes: those occurring in the foreplay stage of sexual encounters and which are believed to increase arousal (Masters and Johnson, 1966: Beck and Barlow, 1984), those concerned with vaginal penetration and lastly, orgasm itself. Table 14 shows the grouping of these classes of sexual experiences. The experiences are listed in descending order of the ratio of the number reporting experience in the diabetic group over the CAH group.

TABLE 14: Sexual experiences reported by women in both groups Q O rder SEXUAL ACTIVITY CAH (*N =17) N DIABETIC (N = 17) N Ratio to 1 Diabetic/ CAH Behaviours increasing arousal

25 You dressed up in a paiticular way 2 5 2.5 24 Y our partner dressed up in a particular way 1 2 2.0

23 You used sex toys 1 2 2.0

5 Deep kissing with your tongues touching 10 16 1.6 9 Y ou caressed with your hands your partner’s genital with

no clothes on 10 16 1.6

3 You kissed your partno-’s fac^ arms, legs, back or otha-

non-sexual areas when dressed 11 17 1,5 12 Y our partner caressed your face, arms, legs, bade ot otho*

non sexual areas with clothes on 11 15 1.4 8 Hugging each other when naked 12 16 1.4 11 Your partner caressed your genitals without your clothes

on 12 16 1.4

7 Your partner caressed your breasts with your clothes on 10 13 1.3 13 Y our partner caressed your face arms, legs, back or otha-

non sexual areas with you naked 12 15 1.2 6 You caress with your hands your partner’s genitals (penis

and balls) with clothes on 10 12 1.2 10 Your partner caressed your genitals (clitoris vagina

pussy) with dothes on 9 11 1.2 15 Y ou used your tongue or lips to stimulate your partna-’s

genitals 10 12 1.2

1 You caressed with your hands your partner’s face,

arms,legs,back w other non-sexual areas when dressed 15 16 1.1 2 Hugging each other with your clothes on 13 14 1.1 4 Kissed with mouth closed 12 13 1.1 16 Your partner used his tongue or lips to stimulate your

genitals 11 12 1.1

Penetration

21 Y our partner put his penis inside your anus (bade passage)

0 3

14 Your partna" put a finger into your vagina 7 15 2.1 17 Y our partner put his penis inside your vagina 12 17 1.4

Orgasm

22 Your partna- ejaculated (came) in your mouth 1 7 7.0 20 Y our partner ejaculated (came) outside your vagina 4 10 2.5 19 Your partner came in your vagina 4 14 2.3 18 You had an orgasm (came) 7 15 2.1

* Missing data for two woman.

Overall comparison of CAH and Diabetic womai rq)orting listed sexual activities by Wilcoxon Matched-Pairs Signed-Rank Test, T=0, N=25, p<0.000009 (2-tailed).

The analysis of reported experiences in Table 14, clearly supports the greater experience of those women with diabetes for all behaviours. Although more of the diabetic women had partners at the time of interview, this did not explain these reported differences as the women were asked about total and not current experience. The group differences are illustrated by the following quotes:

I ’m not too keen on kissing him down there. He doesn’t kiss me there either. (C04)

Deep kissing makes me fe el sick. (Cl 5)

I enjoy a broad range o f things. (D28)

I enjoy sex with more than one person at a time. I enjoy most things. (D30)

The lower levels of the sexual experiences of women with CAH included all of the three classes of behaviours, those that increase arousal, those of penetration and of orgasm. It has been proposed (Beck and Barlow, 1984) that anxiety may be a major inhibitor of sexual arousal. In addition to a generally high anxiety level for all sexual activities of those with CAH, low arousal may also be experienced because of the reluctance of these women to engage in intimate interactions where their partners may become aware of their genital abnormalities. This anxiety may also partially account for the lower level of experience for both finger and penile penetration, and the issue of the effects of anxiety on sexual activities will be taken up later in the report. It is also possible that successful penetration may be a function of the type of surgery undergone by women with CAH; this issue will be further examined under the element of physical problems due to the condition.

There is very little normative data on the range of sexual activities and it is difficult to make direct comparisons of sexual experience as the age ranges and the descriptions of the activities are rarely entirely comparable. A general population study by Breakwell and Fife-Schaw (1992) however reported on three similar behaviours: deep kissing, vaginal penetration and anal penetration (see Table 15).

TABLE 15: Comparison of percentages of those reporting sexual experiences in Breakwell and Fife-Schaw(1992), the diabetic and

the CAH groups SEXUAL EXPERIENCE BREAKWELL and FIFE-SCHAW N=1315 DIABETIC GROUP N=17 CAH GROUP N=17 Deep kissing 92 94 59 Penile penetration 70 100 71 Anal penetration 9 18 0

The samples of women in the present study are older than those in Breakwell and Fife-Schaw's female sample and, in line with these researchers' findings of increased sexual experience with age, the diabetic women are somewhat more sexually experienced in the behaviours examined in both studies. By contrast, the women with CAH, who are also older than Breakwell and Fife-Schaw's sample, are not.

Table 14 also indicates lower incidence of orgasmic attainment by those with CAH. The issue of the experience of orgasm is of particular interest in relation to women with CAH. The finding of this area and the information obtained from the discussion about masturbation both suggested that the women with CAH were less likely than those with diabetes to have experienced orgasm. The women with diabetes who had masturbated (over three- quarters) and the smaller percentage (less than half) of those with CAH having engaged in this activity, were asked if they had masturbated to orgasm. About half in each group reported that they had. These women, and those who had not but reported orgasm during sexual activity with a partner, were asked to give a description of 'what it felt like'. These descriptions were classified into either high arousal or orgasm (Hite 1976) by two independent, experienced

psychosexual therapists who were blind as to group membership of those providing the descriptions (see Appendix VII).

Seventeen of the nineteen women in the CAH group r«porf^Lfhe| had had the opportunity to experience orgasm either through masturbation or sex with a partner. Of these, thirteen (76 percent) reported experiencing orgasm. The independent classifiers failed to agree on one of these descriptions which was dropped Ifom the analysis, and of the remaining twelve descriptions fi’om the women in the CAH group, seven (58 per cent) were classified as descriptions of orgasm. By contrast, the entire diabetic group had had the opportunity to experience orgasm through masturbation or with a partner, and fifteen (88 per cent) of these women reported that experience. All of these were classified as descriptions of orgasm. Although in this study the percentage of women with CAH who reported orgasm was considerably greater than the proportion of the 1977 study by Money and Schwartz (22 per cent), also based on self-reports, it is still considerably less than for the diabetic group. There are two possible explanations for this lower level of orgasm: that it is due to the medical aspects of the condition, the genital abnormalities and the surgical repair, or to anxiety arising from engaging in this intimate sexual behaviour.

The relationships between the effects on the ability to attain orgasm of the extent of genital abnormality or corrective surgery are difficult to examine, as more severe levels of masculinisation require more extensive surgery. It is therefore not possible to separate out these two effects. Additionally, the sample of women with CAH in the present study, being diagnosed early in the

understanding of the condition, had received similar levels of corrective surgery across the Prader classification. Although it was therefore not possible to asses the relationship between orgasmic experience and surgery or level of abnormality, examination of the data identified a number of areas that might further contribute to the understanding of non-achievement of orgasm by these women. These fiirther areas will be reported under the remaining five elements of this concept; reasons for engaging in sexual behaviour, stimuli that elicited a sexual response, satisfaction with sexual behaviour, physical problems due to the condition and the effects of anxiety of sexual activities.

>«venteen-o£4he nineteen women in the CAM-group reported-that they had had the (smportunity to experiente orgasm either through masturbation or sex with a partnerX Of these, thirteen ('^p ercen t) reported experiencing orgasm. The independent\lassifiers failed to a g \e on one of these descriptions which was dropped from thX^alysis; of the remaimng twelve descriptions fi"om the women in the CAH group, >«even (58 per cent)Nvere classified as descriptions of orgasm. By contrast, th^ entire diabetic grou^ had had the opportunity to experience orgasm through nh^sturbation or with a p ^ n e r, and fifteen (88 per cent) of these women reported tm t experience. All of tXese were classified as descriptions of orgasm. Although in nus study the percenta^ of women with CAH who reported orgasm was double the proportion of the ^ 7 7 study by Money and Schwartz (22 per cent), also based on women’s self-reportX it is still considerably less than for the diabetic g ro u p .\ There are two p ^ ib le explanations for this lower level of orgasm: that it is dub-to-the medical aspeoi

jjflthe-CQndi^n, that is, the genital aljnonnalities and the surgical repair, or to anxiety.arising from engaginglîrthre-tntimate sexual beh a ^

The element o f reasons fo r engaging in sexual behaviour

Although about one quarter of each group stated that they occasionally 'had sex' because their partners expected it, both groups felt the most common motivation was their own sexual need. For all the women this view was accompanied by a very strong statement that sexual activity was dependent on the existence of a close emotional relationship:

cos I fe lt I loved him enough to let him into my body, your body has to be shared with somebody that you love. (C37)

I have to know them, trust them, fo r a long time. (C52)

I've never been able to distinguish between sex and love. (D30)

Women have sex fo r love. (D23)

The element o f stimuli eliciting sexual responses

Such reasons for making love are in line with normative female gender stereotypes (Hite 1976), with both groups of women reporting the most important sexual stimulus to be that of a 'special person'. Interestingly, only the CAH women mentioned male characteristics such as ‘tight bums’, ‘muscular shoulders’ and ‘haiiy chests’ as stimuli that might elicit sexual interest or behaviour. This focus by the CAH women on male physical characteristics may reflect a more general conceptualisation of 'sexuality' as external physical attributes. Two factors may have contributed to this: first, the frequent

experiences of the CAH women at the hospital clinics where there was a strong focus on the external genitalia. Second, although these women subscribed to the view that sex should be part of a close relationship, the difficulties they had with such relationships may have led them to less threatening stimuli such as external physical characteristics.

All of the women with diabetes were very clear about their lack of sexual interest in other women:

I can't say that any woman has ever done anything fo r me. (D29)

The whole idea kind o f turns me off(D23)

No, never. (D34)

Two (11 percent) of the women with CAH had experienced lesbian relationships, and another three (16 percent) expressed a strong sense of sexual appreciation of other females. They described considering what it would be like to have lesbian relationships, although they were very hesitant about acting on these thoughts. This hesitancy was attributed to an awareness of pressure against such behaviour from their families and friends:

I f 1 see someone and I think 'she's pretty', I don't know-1 know it's sort o f wrong, you ju st don't do it do you? In our fam ily that sort o f thing is frowned upon, when you