Introduction

Disorders of sex development (DSD) refer to congenital abnormalities in sexual development in which anatomical, gonadal, and genetic sex are atypical (Hughes, Houk, Ahmed, & Lee, 2006; Woodward & Neilson, 2013). Patients with DSD may present with this condition at birth, during puberty, or in early adulthood (Al-Jurayyan, 2010; El-Sherbiny, 2013; Woodward & Neilson, 2013). The most common presentation at birth is overt genital ambiguities such as cloacal exstrophy, enlarged clitoris, posterior labial fusion, and inguinal or labial mass in females, and bilateral impalpable testes, hypospadias with undescended testes, and bifid scrotum in males (Al-Jurayyan, 2010; El-Sherbiny, 2013; Woodward & Neilson, 2013). Other forms of late presentation at puberty or early adulthood include unrecognized genital ambiguity, female inguinal hernia, delayed or incomplete puberty, primary amenorrhea, virilization in females, absence of breast development in females at puberty or early adulthood, breast development in males, and gross and occasional hematuria in males (El-Sherbiny, 2013; Mungadi, 2015; Woodward & Neilson, 2013). Others include complaints from husbands about inadequate vaginal passage and refusal of marriage from males (Mungadi, 2015).

In the Nigerian context, sex assignment is considered an emergency medical issue and, as such, should not be delayed. Ambiguous genitalia causes cultural, social, and psychological crises in patients and their parents (Mungadi, 2015). However, sociocultural factors such as biases toward selecting the male gender because of economic advantages, religious and traditional beliefs, and pressure from grandparents influence gender assignment (Al-Jurayyan, 2010, 2011; Mungadi, 2015; Ozbey, Darendeliler, Kayserili, Korkmazlar, & Salman, 2004; Rebelo, Szabo, & Pitcher, 2008). In developing countries, most people with congenital adrenal hyperplasia (CAH) are raised as males because of community preferences for male children because of sociocultural factors (Al-Jurayyan, 2010, 2011; Ozbey et al., 2004; Rebelo et al., 2008).

The physical experiences of people with DSD include physical appearance, amenorrhea, small stature, small penis, and infertility (Chadwick, Liao, & Boyle, 2005; Guntram, 2013; Sanders, Carter, & Lwin, 2015). Women with DSD experienced amenorrhea as a result of the absence of a uterus and other female reproductive organs (Guntram, 2013). They expressed sadness over their inability to experience monthly menstruation (Sanders et al., 2015). The menstrual experiences of men with DSD have not been reported. This may be because of the fact that, in developed countries, DSD are diagnosed early and treatment commences as soon as possible, as opposed to the situation in developing countries, where people with DSD are often diagnosed only during adolescence or adulthood (Ediati et al., 2015a, 2015b; Ediati, Maharani, & Utari, 2016; Warne & Raza, 2008) because parents ignore the ambiguous genitalia of their children at birth. Therefore, this study explores the menstrual experiences of people with DSD in Nigeria.

Methods

Study Design

This study employed a qualitative approach with a transcendental phenomenological study design based on Husserl's philosophy (Creswell, 2014; Merriam & Tisdell, 2016; Speziale, Streubert, & Carpenter, 2011). This approach is typically used to make meaning by identifying a core phenomenon and accurately describing its effect on the life experiences of people (Speziale et al., 2011). It is the most suitable method for exploring the health experiences of clients (Lee & Krauss, 2015).

Participants

This study was conducted between April and September 2017 in Usmanu Danfodiyo University Teaching Hospital (UDUTH) Sokoto, Nigeria, among patients with DSD and sex reassignment. Adult patients with DSD who spoke either English or Hausa were recruited. Thirteen patients were enrolled using a purposive sampling method.

Data Collection

The data were collected through face-to-face interviews with the participants using a semistructured interview guide. Interviews were audiotaped, recorded, and then transcribed verbatim so that the transcripts could be analyzed. Documents and field notes from participant observation were used to supplement the primary interview data. Thirteen interviews were conducted until data saturation. Data saturation occurred at the 12th interview, and an additional interview was conducted for confirmation (Guest, Bunce, & Johnson, 2006). At this point, no new themes emerged from the data. In qualitative research, sample size is determined by the number of participants needed to reach saturation (Speziale et al., 2011). The interview process ceased when additional information did not reveal any new data related to the emerging themes.

Data Analysis

The data were analyzed using the principles of interpretative phenomenological analysis (IPA) and managed with NVivo (QSR International, Melbourne, Australia). IPA was appropriate in this study because it deals with emotional and significant life-changing experiences in health and illness, including psychological distress, gender transition, life transition, and a fluctuating sense of identity (Smith, 2015; Smith & Osborn, 2015).

The four steps of IPA were employed (Biggerstaff & Thompson, 2008; Smith, 2015), as follows: The transcripts were read several times, and notes were taken; the preliminary themes were identified by coding and categorizing; the themes were grouped together as clusters; and the themes were tabulated in a summary table.

Data analysis started after the first interview. Interviews were transcribed and read several times to familiarize the data, which were coded using NVivo; memos were written as necessary. Themes were constructed by grouping similar codes together. The same process was repeated precisely in the next interview transcript while keeping in mind the list of the codes and themes that emerged from the first data set. The second list was compared with the first to establish a classification system that identified recurring patterns. This process continued with other transcripts as more themes or categories emerged.

Ethical Considerations

Ethical approval was obtained from the Research Management Centre, Universiti Putra Malaysia (FPSK-P008/2017) and the Human Research and Ethics Committee of UDUTH Sokoto (UDUTH/HREC/2017/No. 548). Participation was voluntary, and participants had the right to quit at any time. All information was treated confidentially, and anonymity was ensured by assigning pseudonyms. Informed consent of the participants was obtained.

Methodological Rigor

Methodological rigor was ensured using the following criteria: credibility, transferability, dependability, and confirmability (Denzin & Lincoln, 2011). To ensure the credibility of this study, the following strategies were used: triangulation, member checks, and adequate engagement in data collection. For the purpose of triangulation, initial interviews, follow-up interviews, field notes from participant observation, and document analyses were compared and cross-checked. Rich, thick descriptions and maximum variation were used to increase the transferability of the findings. We employed peer examination and reflexivity to enhance the dependability and reliability of the study. Furthermore, an audit trail record of all of the research activities, methodological decisions, and analytical notes was kept to enhance confirmability.

Results

This is part of a larger study conducted on the quality of life and experiences of people with DSD in Nigeria. Thirteen participants were interviewed. Five participants were raised as males, and eight were raised as females. The age range of the participants was 18-45 years. At the time of data collection, eight participants were married, three were single, one was widowed, and one was divorced. Three participants were diagnosed with androgen insensitivity syndrome (AIS), six were diagnosed with CAH, two had ovotesticular DSD, and one each had Mayer-Rokitansky-Kuster-Hauser (MRKH) syndrome and Turner's syndrome. All of the participants had undergone sex reassignment surgeries between the ages of 12 and 44 years for the correction of abnormalities to conform to the societal norms of their gender. Six participants had sex reassignment surgery after marriage, whereas seven had sex reassignment surgery before marriage.

Most participants experienced menstrual problems, such as absence of menstruation among female participants and the presence of menstrual bleeding among male participants. Most of the female participants initially thought that they were experiencing a delay in menarche but later found the problem to be associated with DSD. Whereas the female participants were experiencing amenorrhea, the male participants were experiencing menstrual bleeding. This was discussed as part of the following two themes.

Amenorrhea in Female Participants

Six of the eight female participants experienced amenorrhea, the absence of menstruation. This is common among women with AIS, MRKH, and Turner's syndrome because of the absence of a uterus and other female internal organs. The remaining two participants with CAH experienced delayed menarche.

Female participants described their experiences with amenorrhea as a disappointment. They were expecting menstruation at a certain age, but six participants reported that they had not experienced menses before 18 years old, although menstruation typically starts at around the age of 13 years. Talatu, Tani, and Delu explained that their younger sisters began menstruating between 12 and 14 years old. Talatu was expecting menarche at the age of 12-15 years, but it had not begun by the time she reached 17 years old. She stated:

Yes, I have amenorrhea. I have never seen my menses[horizontal ellipsis]. I ought to have seen it when I was 12 to 15 years old[horizontal ellipsis]. I have never seen my menses. No menstruation in my life! I never menstruated while I was growing up, but some were saying maybe by the age of 17, because all of my younger sisters were menstruating by then. Up to the time I got married, I was not menstruating. (Talatu)

The participants were reassured that some women experienced late onset of menarche and did not begin menstruating until they were 17 years old. Some participants reassured themselves that their menstruation time simply had not arrived yet based on the concept of individual differences. Delu was disappointed when she was not menstruating at 17 years old, as her sister had attained menarche at 14 years old. Delu echoed this sentiment, saying:

Yes! Yes! I was and I am still suffering from amenorrhea. I first notice that when some of my friends were saying that they were menstruating and I am not menstruating but I keep on reassuring myself that my own is not yet. I was 17 years old when my younger sister started menstruating at 14 years.... This makes me feel disappointed and I reported the case to my mother. (Delu)

Amenorrhea prompted some participants to search for the meaning of menstruation because, although they had heard about menstruation, they needed in-depth knowledge. Tani, who was not menstruating up to the age of 18 years, asked her grandmother about menstruation. She explained:

As I earlier said, when I was a teenager, I reached the age of menstruation but I was not having it. I don't know it. We were told in school but I don't know it. I asked my grandmother but she said is not possible for me to say I don't know what menstruation is at my age. She said girls are menstruating at the age of 15 and 16 years. She asks me about lower abdominal pain, but I said I don't know it and I have never experienced it. I don't know it and I have never experienced menstruation. I only read and heard about it in school, but I have never had any experience of menstruation. (Tani)

Despite the knowledge of menstruation acquired by the participants from schools and families, some did not recognize amenorrhea as a problem that required urgent attention. Talatu stated:

I have never menstruated in my life. Since when I got married, up to the time of my first surgery and after this second surgery, [horizontal ellipsis] no menstruation. I was married at the age of 18 years; but I was not menstruating before marriage. Because of my childhood mentality, I did not see amenorrhea as a problem. I only heard of menstruation in Islamiyyah School. They teach us about the dos and don'ts of menstruation. Then, later on, I was asking some people what is menstruation, but I was told that at my age, not having menstruation is a problem[horizontal ellipsis]. It was established that there is a connection between my amenorrhea and lack of an adequate vagina. (Talatu)

The participants established a connection between amenorrhea and having a small vagina. The female participants exhibited poor knowledge of puberty and menstruation. Two participants with CAH experienced delayed puberty and attained menarche after treatment. Jummai was married at 20 years old with amenorrhea but started menstruation after surgery and hormonal therapy. She stated:

I didn't suffer from amenorrhea, but I was thinking I had delayed menarche because I started menstruation at the age of 20 years when most women start menstruation at about 12 or 13 years. But since then, I have been menstruating normally. (Jummai)

She further clarified how menstruation started while using hormonal therapy after surgery:

The menstruation started after the surgery. Prof told me that I should take the hormonal tablets pills for 3 months. He said the drug will help me to start menstruation. He said, he said uhmm! Even if I started the menses, I should make sure I completed my 3 months drugs. So, after 2 months I started bleeding. I am having regular bleeding since then. (Jummai)

Similarly, Lami had delayed puberty, which was stimulated by hormonal therapy before surgery. Lami stated that, after investigation, she was placed on hormonal therapy for the attainment of puberty. She shared:

I started menstruating after I was giving some medicine for my treatment. We went to UDUTH and did all the lab tests we were asked to do. After that, I was sent to see one Dr. Audu in the Endo department. So, they gave me some tablets to take for menstruation. The drugs are like pill tablets. That's was how my menses commenced. So, I continued taking the drugs for about 6 months. Yes, my menses started and continued for about 4 to 5 days. I am doing menstruation now.[horizontal ellipsis] The menses started when I was 20 years old. (Lami)

Amenorrhea affected people with DSD emotionally and psychologically, leading to anxiety about the absence of menstruation because of the importance of menstruation to women and normal lives. Asabe and Ladi described their concerns about amenorrhea. Asabe was relatively more concerned than Ladi, stating:

I was not worried about the absence of breasts but was worried about amenorrhea[horizontal ellipsis]. It really affected me. I was asking myself why me? Am I not menstruating or am I part of the people that are not menstruating or is a problem I have? These are the things that I have been thinking about and being disturbed about. Is it a problem? Or has God created me like that or it is not yet time? That is what was disturbing me then. (Asabe)

Most of the participants experienced emotional distress and thought about menstruation and amenorrhea excessively. Although Delu worried about amenorrhea, the explanation provided in the hospital-that she would never menstruate because of her condition-relieved her concerns. She lamented:

I am disturbed and worried a lot about it. It is something I was told that I will never do in life and I know I will not do it, so I am not putting it in my mind that I will do it. (Delu)

Despite the explanations provided by the hospital about amenorrhea, some participants still hoped that things would change and menstruation would begin. Ladi relayed:

I was seriously disturbed and worried and I am worried, I am comforting myself and I am extremely disturbed. It is something I don't know what to do about, because I can't cure myself and there is nobody that I will face with it. Only when I go to the hospital do they assured me that I will be normal. I used to think that later on things will change for me to start menstruating[horizontal ellipsis]later things will change so that I will start menstruating. (Ladi)

All of the participants with amenorrhea held their own, nuanced perceptions regarding menstruation. Some linked menstruation with fertility and amenorrhea with infertility. Talatu, Ladi, and Delu explained that people relate menstruation to pregnancy and amenorrhea to infertility. Ladi stated: "[horizontal ellipsis]and people perceive that any woman that is not menstruating will almost never conceive and give birth to a baby." Moreover, people related menstruation to pregnancy, as pointed out by Talatu:

People believe that if you are not menstruating you will never give birth and you are not normal. Menstruation relates to pregnancy. (Talatu)

The function of women was emphasized in relation to pregnancy and reproduction. Delu stated that a woman with amenorrhea cannot function as a woman in terms of reproduction. She stated:

People are saying that it is menstruation that gives rise to pregnancy. If there is no menstruation, a woman is not a woman because she cannot function in the normal female function of reproduction. (Delu)

Some participants described amenorrhea negatively by equating a nonmenstruating woman to a man. Laraba explained:

How can you call yourself a woman when you are not experiencing what women are experiencing every month? I only call myself a woman but in the real sense, I am not a real woman. Menstruation is related to womanhood and fertility.[horizontal ellipsis] What differentiates a man from a woman is monthly bleeding that we call menstruation. (Laraba)

As a result of the amenorrhea, some participants considered themselves as incomplete women. Ladi echoed: "Yes, of course, I feel I am an incomplete woman. This is because most women every month they see their menses and in my own case I am not menstruating and if I considered the knowledge I was given[horizontal ellipsis]I know I am not complete like other women." Furthermore, Talatu stated her belief that people consider menstrual blood as a disease that is expelled by women every month and so a woman cannot be complete with a disease in her body. She stated:

I am not menstruating and they said it (menses) is a disease you are expelling every month. As such, I am not a complete woman. (Talatu)

However, some women considered amenorrhea in a positive sense and were happy with life without menstruation. Others considered themselves as superwomen because their condition is a feature of women in the holy Paradise, who are considered supernatural. They believe that they are similar to these women in paradise because these women do not menstruate. Tani stated that many people who are healthy also experience amenorrhea and that, therefore, amenorrhea is not a problem. She elaborated:

Many people live healthy without menstruation. Amenorrhea is not a problem for me because it is a feature of women in the holy paradise (supernatural woman). I consider myself as one of them, these women in the holy paradise who are not menstruating. As such, I am not worried about that, because that is what God Almighty decrees on me. (Tani)

In addition, Talatu believed that God has a special plan for her, which is why she was not menstruating. She pointed out:

I can't say anything because I think Almighty God has a special plan for me. All my relatives are menstruating and have given birth to children. (Talatu)

Participants who had accepted their condition described amenorrhea in a positive sense in terms of being a special and unique person.

Menstruation in Male Participants

All of the male participants in this study experienced menstrual bleeding. Three were diagnosed with CAH, and two were diagnosed with 46,XX ovotesticular DSD. Male participants' experiences of menstrual bleeding were described by the participants as hematuria or bleeding through the common perineal opening. The men experienced menarche, including lower abdominal pain, regular bleeding, and menstrual cycles.

The participants shared menstrual experiences from menarche to continuous menstruation. Most of the participants initially thought the bleeding was hematuria caused by a hookworm infestation. However, it was later confirmed by their parents as the onset of the female menstrual cycle. Abu shared:

After getting enlarged breasts at the age of 15 years, I started having colicky lower abdominal pain for two months and in the third month. I started experiencing bleeding in my urine. Initially, I thought it was haematuria from a hookworm, but later it was confirmed to me that it was menses because it comes and goes on regular monthly basis and is associated with lower abdominal pain. I was highly frightened by the menstruation and the bleeding. (Abu)

The menstruation followed initial development of female breasts in all of the male participants. Most attained menarche at 14-15 years old. Ado attained menarche at the age of 13 or 14 years. He lamented:

I cannot remember the actual time I started the bleeding, but I think I was about 13 or 14 years old. It was around the time I went to the general hospital. It comes on a monthly basis and is associated with lower abdominal pain. The bleeding starts gradually and lasts for 3 or 4 days, usually at the end of the month. When the bleeding started, I didn't tell anybody and my penis became erect so I concluded it was ambiguous genitalia. (Ado)

The attainment of menarche for men with DSD was very distressing. They were frightened and terrified by the sight of blood. Bala described:

The bleeding started when I went to a pharmaceutical shop to buy drugs for my lower abdominal pain. After I took that drug then I started seeing blood in my urine so I quickly rushed to the shop to complain to him because I was seriously disturbed by seeing the blood in my urine. You know, blood is very terrifying to me. He told me to take some drugs to make the bleeding stop. (Bala)

After menarche, some participants sought treatment for bilharziasis. Idi shared:

Like I told you, I was 15 or 16 years old when I first saw blood in my urine in the morning, I was thinking was a hookworm that caused bleeding in the urine but it continued for about 5 days before it stopped. I went to the pharmacy and bought drugs for hookworm and I started taking it. It stopped, but after 4 weeks it was back again. That was how it started and continued until after I had the surgery. (Idi)

Menstrual bleeding in male participants was usually preceded or accompanied by colicky lower abdominal pain. Abu had lower abdominal pain for 2 months before menarche. The lower abdominal pain continued with every menstrual cycle. Idi stated:

At the age of 15 or 16, I started growing female breasts in my chest and at the same time I started suffering from lower abdominal pain with associated discharge and bleeding. First, I thought the bleeding was haematuria because of hookworm disease, but later I knew that it was menses. (Idi)

Tanko and Bala described the severity of their lower abdominal pain. Tanko experienced lower abdominal pain similar to women: "I am experiencing cyclical lower abdominal pain like the way women are doing[horizontal ellipsis]." Meanwhile, Bala explained how the pain interfered with his normal daily activities. He mentioned:

The lower abdominal pains used to be severe to the extent that it could stop me from doing my normal day-to-day activities. (Bala)

The participants reported that the menstrual bleeding period ranged from 3 to 5 days every month. Ado, Bala, and Tanko reported experiencing 3 days of bleeding, which usually occurred toward the end of every month. Bala stated: "Since then, I was having the bleeding frequently every month for about 3 days. Sometimes it would come before the urine, in the middle, or at the end." Ado experienced bleeding at the end of the month: "The bleeding started gradually and lasted for 3 or 4 days, usually at the end of the month[horizontal ellipsis]." Meanwhile, Abu and Idi reported having 5-day periods. Idi explained:

Like I told you, I was 15 or 16 years old when I first saw blood in my urine in the morning, I thought it was a hookworm that caused the bleeding in the urine, but it continued for about 5 days before it stopped. (Idi)

Men with DSD experienced psychological and emotional crises as a result of menstruation and ambiguous physical appearance, in addition to anxiety, depression, and emotional disturbances. Bala and Abu were worried because of menstruation and other physical ambiguities. Bala stated: "Is not possible to not be worried and anxious as a man with female breasts and menstruation." Abu and Bala were anxious because of fears about public misconceptions and interpretations of their condition and about their fate in society once people knew they had breasts and were menstruating. Abu stated:

I was having fear and anxiety about the community if they heard that I am having menses. How would they perceive me and what would be my fate in that society? I was also not comfortable to go out because people would see me my breasts and label me differently. (Abu)

The male participants were depressed because of physical appearance and problems related to social perceptions. Analysis of the field notes from the participant observations showed that Tanko and Bala both appeared depressed before surgery and that their major concerns were menstruation and breasts. Both appeared melancholy, without any signs of a smile. Bala, who looked depressed at the clinic before the surgery, expressed sadness about his condition and that his mood sinks when he ponders his condition. He stated:

It makes me feel sad about it. Sometimes when I remember my condition, I become very angry about everything. Sometimes my mood changes from happiness to sadness. I am highly disturbed about my entire life, sometimes I will be depressed and lose interest in myself and my surroundings. It is highly disturbing and worrying to be hermaphrodite, [horizontal ellipsis] Is not possible to be free of worry and emotional upset and disturbance as a man with menstruation?[horizontal ellipsis] (Bala)

The onset of menstruation in individuals who were raised as males pushed them to harbor suicidal ideas. Idi reported that his diagnosis seemed like a death sentence and was wishing for his death before people become aware of his condition. He shared his thoughts:

It was like a death sentence on me. I was praying for my death before people knew my condition. They will really kill me with stigma before my death comes. I wish I could have died before now. When the menstruation started, I couldn't believe it as a man with these unprecedented issues, having breasts and menstruation. I was angry with myself and in deep sorrow and fear. I thank God that I was able to come out of this situation. But it was the most difficult moment of my life. (Idi)

The male participants with DSD expressed suicidal ideation because of fear of stigmatization and the shame of having the community learn of their menstruation and other bodily ambiguities.

Discussion

The findings of this study indicate that women with DSD experienced amenorrhea because of their condition and small vagina. Adults and adolescents with DSD who were reared as females usually experienced primary amenorrhea depending on the condition and the gender in which they were raised (El-Sherbiny, 2013; Mungadi, 2015). Most of the female participants in this study experienced primary amenorrhea because of conditions such as AIS, MRKH, and Turner's syndrome. Female internal genitalia are absent in these types of DSD (El-Sherbiny, 2013; Mungadi, 2015), and amenorrhea is because of the absence of a uterus. Women with DSD-related amenorrhea reported uncertainty about their bodies and lack of confidence to discuss menstruation, which is a normal female phenomenon. They needed information about both menstruation and amenorrhea (Sanders et al., 2015). The female participants in this study also reported poor knowledge of pubertal changes, menarche, and menstruation. This may be because of sociocultural factors; in some societies, sexual issues are regarded as taboo, and as such, parents do not provide sex education to their children (Ediati et al., 2016; Warne & Raza, 2008). Therefore, there is a general need for parents and teachers to educate children about puberty and sex to enhance the knowledge of appropriately aged children regarding normal and abnormal pubertal developmental changes. Future research is needed to explore the current level of knowledge regarding puberty and menstruation among young girls in Nigeria. There is also a need to educate parents about the identification of ambiguous genitalia at birth, the need to seek treatment at an early age, how to rear children with DSD, and the need to inform children about the condition before puberty.

Adolescence and early adulthood is a stage of life that is characterized by questioning of the self, others, life, and ultimate purpose (Sebastian, Burnett, & Blakemore, 2008). Young people with DSD are more likely to experience heightened emotions, anxiety, self-discovery, and uncertainty as they begin to develop a sense of "who they are" (Sanders & Carter, 2015; Sebastian et al., 2008).

In addition, Sanders et al. (2015) reported that women with DSD expressed their emotions about their amenorrhea and their inability to experience normal monthly periodic bleeding. Women with DSD may face psychological stressors as a result of amenorrhea (Schutzmann, Brinkmann, Schacht, & Richter-Appelt, 2007). The reasons for the emotional distress and anxiety identified in this study may relate to the importance that is attached to menstruation by participants and their perceptions about menstruation and fertility.

This study revealed that female participants linked menstruation with fertility and amenorrhea with infertility. This finding may not be surprising because of sociocultural differences and African perceptions about fertility. In Africa, fertility is considered as an ultimate gift (Boyle, Smith, & Liao, 2005; Chadwick et al., 2005; Sanders et al., 2015). This aligns with the findings of Burrows and Johnson (2005), who reported that women expressed happiness about menstruation and menarche, relating these to fertility and normality. However, our findings contradict those of Guntram (2013), whose participants described amenorrhea in a positive sense, saying that it is nice and unique to be relieved of the burden of menstruation. This study is similar to the findings of Burrows and Johnson where women considered menstrual blood as a disease that needed to be expelled. Women with DSD emphasized the important role of menstruation in the concept of womanhood and in "feeling like a woman" (Guntram, 2013).

This indicates that women who had accepted their condition described their amenorrhea in a positive sense in terms of being special and being a unique person. They considered themselves as superwomen and were happy with their situation. This is similar to other findings in which women considered the advantages of amenorrhea over menstruation, like not needing to take hormonal pills to prevent unwanted pregnancies and not needing to buy sanitary pads (Guntram, 2013; Sanders & Carter, 2015). The women in this study described themselves as unique and special, indicating their success in coping with DSD.

Menstruation is a normal female cyclical phenomenon. However, when menstruation happens in males, it is a source of discredit and stigmatization by peer groups and by society in general (Chadwick et al., 2005; Malouf, Inman, Carr, Franco, & Brooks, 2010). The menstruation experience of all of the male participants in this study was because of discordance between genitalia and karyotyping of the individual (El-Sherbiny, 2013; Mungadi, 2015). Menstruation occurred in male participants if the individual was genetically female but was, because of ambiguous genitalia, assigned as a male. At puberty, female sexual characteristics will develop in a female who is assigned as a male, leading to menstruation. Hutson, Warne, and Grover (2012) reported that young adults and adolescents with CAH who were raised as males experienced hematuria, menstrual bleeding, and lower abdominal pains at puberty based on the extent of virilization (Hutson et al., 2012). Another reason most people with CAH are raised as males in developing countries is the sociocultural preference given to male children (Al-Jurayyan, 2010, 2011; Ozbey et al., 2004; Rebelo et al., 2008). The rhetorical question asked by Dr. Imam supports this assertion:

[horizontal ellipsis]why are most of them presenting as male otherwise they are female because of the love of the community for the male child; once they see that the clitoris is enlarged at the birth, [horizontal ellipsis] they will just adopt the child as a male because of their love for the male child. They will raise him male, but otherwise he is a female, [horizontal ellipsis] (and will eventually) develop and become adult, then female sexual characteristics will now be manifesting (Dr. Imam).

This may be the reason most patients with CAH are raised as males in developing countries, because of sociocultural factors such as esteem for the male child because of economic and other social roles. This assertion was supported by other findings from Saudi Arabia, South Africa, and Turkey (Al-Jurayyan, 2010, 2011; Ozbey et al., 2004; Rebelo et al., 2008).

This finding may not be surprising, because more than 60% of women in Nigeria delivered babies without skilled birth attendance in 2013 and about 20% of Nigerian women delivered without any external assistance (Austin, Fapohunda, Langer, & Orobaton, 2015; National Population Commission [Nigeria] & ICF International, 2014). Moreover, in developing countries, patients with DSD typically present later in life, after the development of psychosocial problems associated with ambiguous genitalia or other ambiguous physical traits (Ediati et al., 2015b; Warne & Raza, 2008). Therefore, most of the patients with DSD are delivered at home and do not present to the hospital until adulthood when they have already developed psychosocial problems because of ambiguous physical manifestations such as menstruation. In addition, because of the inadequate nursing and midwifery workforce in Nigeria, skilled birth attendants who would be able to provide a professional assessment of the mother and child are not present at most home deliveries (Austin et al., 2015; Envuladu, Agbo, Lassa, Kigbu, & Zoakah, 2013). Studies in Nigeria show that approximately 70%-78% of women delivered at home without skilled birth attendance or supervision (Adelaja, 2011; Envuladu et al., 2013; Idris, Gwarzo, & Shehu, 2006). Therefore, health workers should educate parents on the importance of professional help during delivery and on how to recognize ambiguous genitalia at birth. It is hoped that this study will help women with amenorrhea and men with menstruation share their experiences and influence others to share their experiences as well, thereby alleviating their anxiety. Furthermore, it is hoped that this study will encourage the development of a psychosocial intervention aimed at reducing the psychosocial effects of DSD. More research is needed to understand the reason(s) underlying the delayed diagnosis of DSD in developing countries.

Conclusions

People with DSD experience menstrual problems that negatively affect quality of life. Amenorrhea affects women physically, socially, and psychologically because of its relationship with infertility and of the importance attached to marriage and fertility in developing countries. Men who experience menstruation are typically shocked and surprised at the symptoms, although menarche is almost universally preceded by the development of typically female breasts. This shows that parents of children with DSD overlook or ignore the ambiguous genitalia of their children at birth. Therefore, there is a need for parents to seek medical treatment for DSD at birth, to deliver in medical settings, and to educate their children about pubertal changes.

Limitations

The qualitative nature of this research and its limited sample size mean that the findings of this study may not be generalizable to all of those with DSD in Nigeria.

References