Perceptions and experiences of women with premature ovarian insufficiency about sexual health and reproductive health – BMC Blogs Network
Posted: February 9, 2021 at 7:52 pm
In this study, 16 women with POI, aged from 27 to 46years old, and a POI duration of 125years were interviewed. The age range of women at the time of POI and definitive diagnosis was 13 to 40years. Among the participants, three women had remarried, two of whom had divorced after diagnosis POI due to infertility. The level of education of women was from primary to doctorate. The cause of the POI was mainly unknown, but in 2 participants, POI occurred after cancer treatment and a participant afflicted to POI following an autoimmune disease. The Other demographic characteristics of the participants are presented in Table 1.
After content analysis of the interviews with a focus on the perception and experience of women with POI of reproductive-sexual health, four categories emerged (endangerment of women's health, psychological agitation, disruption of social life disturbance in sexual life), explained as follows.
The results showed that all participants were concerned about the effects of decreased ovarian function and changes in hormone levels on their future health.
This main category consists of four subcategories (irregular menstruation, emergence of menopausal symptoms, infertility, signs of early aging) as follows:
Menstrual cycle changes (irregular menstrual cycle, primary amenorrhea or sudden cessation of menstrual bleeding) are one of the first suspicious signs of POI in women that resulted mostly to consult a physician.
One of the participants, who had POI for 8years, said:
The first time my period became irregular, I went to the doctor and she told me that I should take hormone therapy. Before that, I had regular periods, but after 2-3years, I did not have regular periods, and the doctor said there was a possibility of premature ovarian insufficiency (p. 9, 43 y).
Another participant who had regular periods for 27years, stated:
Suddenly, I did not have another period. I went to the doctor. I had an ultrasound and found that I no longer had an ovum (p. 3, 46 y).
A number of participants did not experience menstruation at puberty and had primary amenorrhea, or spotted only once.
One participant that had a spontaneous POI, said:
I did not menstruate at all from the beginning, like my sister (p. 1, 30 y).
Following changes in hormone levels, participants experienced some degree of menopausal complications.
One of the participants who had POI following treatment of cancer, said:
Dry uterus bothers me a lot, especially during sex (p. 10, 46 y).
Another participant who had POI for 10years, stated:
It was very hard at first. In particular, flushing much annoyed me (p. 11, 44 y).
The other participant had POI with an autoimmune disease origin and had one live child with successful spontaneous pregnancy, said:
Premature ovarian insufficiency reduced libido (p. 8, 35 y).
This issue was the main concern of most participants and one of the main complaints of participants with POI was infertility.
A participant who had underwent chemotherapy for cancer treatment in 2008 and had lost her fertility for 11years, said:
I did not know before, but when I inclined to have a baby, I later realized that POI result to infertility (p.2, 4 y).
Another woman who had divorced due to have a 17-year-old history of infertility and remarried, stated:
When I did ultrasound check for infertility, the report showed that my ovaries are very small like as ovaries in menopause women (p.12, 43 y).
Due to decreased levels of estrogen in afflicted women, some of them reported conditions like loss of beauty, wrinkling of the skin and decreased feeling of youth.
One participant, who had been suffering from premature ovarian failure since the age of 22 and for 10years, said:
My first concern was this: I was no longer beautiful (p.16, 34 y).
The other participant that is pregnant currently with donated egg, said:
Eventually you f1eel the changes in your body. For example, you notice wrinkles on your skin (p.9, 43 y).
One participant that had POI for 13years, stated:
Although I am 37years old, I do not feel young I feel aging and I am old (p.13, 38 y).
POI occur in women is less than 40years old, while the normal age of menopause in women is 4555years. Hence the acceptance of POI for participants was accompanied with psychological reactions.
This main category consists of three subcategories [anxiety reaction, mood reaction, agitation in the selection of childbearing] as following:
Participants experienced an onslaught of negative emotions after being diagnosed with POI by a physician, including feelings of despair, depression, a sense of aging, and shock from menopause.
A participant who had POI since the beginning of her marriage and for 5years said:
When it told me to get menopause, I tried for traditional medicine but, due to that was not successful, I was disappointed (p.7, 37 y).
Another participant expressed:
At that time, when I realized my problem, I became depressed and thought that I was the only one. It had a great effect on my mood (p.1, 30 y).
A participant told in despair:
Because I dont have children, I be early menopause, that is, I got oldThese are other signs of aging (p.4, 46 y).
Another participant, who had POI since the age of 22 and had been struggling with it for 12years, said:
I really didnt expect such a thing at all. I was planning to have a planned pregnancy. But the exact opposite happened. The shock was so great it was the biggest shock of my life I have ever experienced (p.16, 34 y).
Popular reactions in afflicted women with POI were included: feeling of uncertainty of future conditions, fear of disease outcome, feeling eternal problems [eternal infertility] negative effect on mood and weakness of the nerves.
One of the participants expressed with surprise and confusion:
I have no idea about the future. I'm very confused. I dont know what will happen to me (p.4, 42 y).
Also part of the conversation with a participant was as follows:
I think more about the fact that this [pregnancy] may never have happened to me (p.14, 27 y).
Another participant said:
Premature ovarian insufficiency makes me angry quickly. I'll get mad soon (p.10, 46 y).
A participant told:
I am worried that I will not have any problems after the age of 40. I am afraid of the consequences of this disease (p.2, 34 y).
Considering that the options available to solve the problem of infertility in women with POI are currently limited and unfortunately there is no definitive treatment for female infertility in these women and the issue of cell therapy is being researched on animal models and do not use so far on humans, the only options offered to couples are the use of donated egg and adoption. Nevertheless, some participants opposed to accept them. If a participant commented on the issue of donated egg as follow:
I think to myself about the baby Because the egg is not mine, I am afraid I will not feel like a mother when she was born. Also she continue:
I must convince myself about this pregnancy and deal with it (p.15, 43 y).
Spiritual aspects of donated egg were important for some participants.
A participant was concerned about this, saying,
I do not care if I conceive with the donated egg, but its religious issue is important to me. It bothers me a little (p.1, 30y).
Moreover, it was important for a number of participants to know that the donor be a familiar person.
A participant stated:
I'm happy to have an ovum from my sister rather than a stranger (p.2, 34 y).
Most participants expressed POI has disrupted the social aspects of their lives. Social isolation, having privacy, unconscious jealousy and seeking support are four subcategories that related to this main category and be explain as follows:
Patients stated that they were reluctant to be in public because of impatience, a tendency to be alone, and to become nervous about social relationships.
A participant said:
I'm not bored totally. I like to be at home, to be alone (p.13, 38y).
Most afflicted women tended to maintain their privacy for fear of being judged by others, the importance of hiding the problem of infertility and believing in the privacy of the subject.
Some of the statements of the participants are as follows:
It is important for us that the donated egg is kept secret. Because if I get a donated egg, I will not be my own child and I will not judge (p.6, 34 y).
This is a personal matter and has nothing to do with anyone (p.13, 38 y).
Some participants expressed a reluctance to associate with families that have children and they are jealous of pregnancies in others or seeing children.
If a participant that had POI for 26years, said:
I was upset when I saw that others had children and became pregnant. Because I have a problem getting pregnant myself (p.12, 43 y).
This issue was the most important item that as a motivation factor helped afflicted women not only to accept complicated condition but also to pursue infertility treatment seriously. According to participants, the support of husbands, family and friends helped to increase hope and reduce psychological threat to women. In the meantime, the supportive role of the husbands was very prominent for women, as one of the participants that had POI for 18years, said:
I am most supported by my husband. If he did not help me, I wouldn't be able to control the situation and control myself. He encourages me to continue my treatment and does not let me Disappointed. (p.5, 30 y).
Another participant stated:
My sister, like me, had an early menopause. He tells me you are young now. Get treated sooner. You get the result. She is very hopeful and encourages me (p.7, 37 y).
In most patients, POI had a negative effect on the couple's sexual relationship.
Due to changes in hormone levels, women experienced sexual function disorders such as dyspareunia, reduced libido, and anorgasmia. These factors caused women to worry about the stability of their married life and the instability in marriage that they formed two subcategories from three.
In contrast, a number of other patients reported that POI had no effect on their sexuality.
The third subcategory was the ambivalence sensations that all of them explained as follows:
The disease had a negative effect on sexual intercourse and sexual pleasure of affected women and on the other hand, sexual intercourse was important for the husband. As a result, a number of participants were concerned about the stability of married life.
A participant stated:
Before my problem, I had sexual desire, but now I do not have it at all, and this causes us to have sex more often with fights, and it has disrupted our relationship (p.10, 46 y).
Beside to decreased sexual satisfaction in couple, infertility also, leaded to some women felt insecure and worried about divorce. A few others threated to divorce from the spouse's family, and some be feared from their husband remarriage.
A participant said:
From the beginning of my marriage, I was stressed until now because I did not have children. My concern is to have children and that our marriage will fall apart (p.1, 30 y).
Another participant stated:
Now my mother-in-law can easily divorce me. She says either bring a child or we will divorce you (p.4, 42 y).
The cessation of menstrual bleeding on the one hand created negative feelings for the participants and caused a kind of psychological pressure on them, but on the other hand had different effects on the participants spouses such as sexual satisfaction and helping to improve sexuality. Moreover, in the context of Iran religiously, having sex during a woman's period is against the Sharia, some patients even said that their partners were delighted with stopping in their menstruation to have sex freely. Therefore, these conditions caused women had been had a dual feeling about the negative impact of POI on their sexuality.
One of the participants said:
My husband says how good I am. I am comfortable without a condom. No man is happier than me (p.5, 31y).
Another participant, who has been suffering from POI since the age of 22 and for 12years, said:
We are trying to cope with and we are trying to control and improve the condition ourselves. For example, we use lubricant for dyspareunia (p.16, 34 y).
Or another participant said:
My husband thought POI meant we could no longer have sex. But when he saw that we had no problem with sex, he said it didn't matter. The important thing is that we can have sex without any limitation (p.11, 44 y).
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