In this study, 16 women with POI, aged between 28 and 47years, and a POI duration of 215years were interviewed. The demographic characteristics of the participants are summarized in Table1.

After content analysis of the interviews with a focus on the factors influencing the QOL of women with POI, three themes emerged (disease effect, distorted self-concept, and hormone replacement therapy effect), explained as follows (see Table2).

Consisting of two main categories i.e. physical and psychological, the theme is defined here as the direct negative influences POI exerts on the various aspects of a womans health, taking a toll on her QOL.

The very first complaints of POI in these women were menstrual disorders including menstrual irregularities, oligomenorrhea, and in some cases, metrorrhagia, occurring 6months to 6years prior to the final diagnosis. Two of them had primary amenorrhea. Many of the women with POI complained about vasomotor disorders such as hot flushes, night sweats, and heat intolerance.

I cant bear heat or thirst. Its been more intense in the last six months. When I begin to fall asleep at night, suddenly the hot flushes come about. Its as if I am burning from the inside. I cant go to sleep anymore when this happens, you know, because of the rapid heartbeat and all the sweating (20's-30's, disease duration: 2 years).

Fertility disorders were also caused by POI. The women inclined to have a baby complained about infertility. Those resorting to assisted reproductive technology (ART) mentioned donor egg pregnancy, abortion, and in-vitro-fertilization (IVF) as factors reducing their QOL and putting a long-lasting strain on them.

As for bone complications, two of the most commonly experienced issues were joint pain and osteoporosis. Also, a few of the women complained about post-menopausal tooth pain and sensitivity.

I have osteoporosis and severe joint pain. I feel pain deep in my bones. I cant take long walks (40's-50's, disease duration: 13 years).

The mucocutaneous complications were reported by almost all participants as occurring in the form of vaginal or skin dryness; vaginal itchiness and tightness; and reported by a few, there were falling hair and wrinkled skin.

Dryness and itchiness drive me crazy. Sometimes I scratch myself to bleeding. You wouldnt want to know how awful it is when at work, it hurts so much that I like to chop it off. (40's-50's, disease duration: 3 years)

The afflicted women would mainly experience sexual function disorders due to ovarian hypofunction. They experienced dyspareunia, reduced sex drive, and anorgasmia.

The disease has affected my sex life. I dont feel like having sex at all. Last time I had sex, it was so, so painful and hurt a lot. I just tried to cope up with it and make as if it wasnt there but I could never have an orgasm. (30's-40's, disease duration: 6 years)

Despite these disorders, most women expressed that their frequency of having sex remained unchanged.

Now that I am disabled and not a perfect woman anymore, I want to manage it and have a kind of normal sex life. I dont want my husband to feel deprived. I would like him to have a normal sex life. (30's-40's, disease duration: 3 years).

Many women were in good health, however, some of them reported conditions like weariness, loss of physical strength, and sleep disorders.

I feel as if I had become heavier when you dont get period, youre down youre not that agile anymore. Youre bored and not fresh. (30's-40's, disease duration: 4 years).

According to a majority of the participants, being diagnosed with the disease was shocking and unbelievable:

It came to me like a blow. I felt awful. I was shocked and frustrated. I was in shock for some time. (30's-40's, disease duration: 3 years).

The women experienced grief for quite a long time after being diagnosed with the disease. They were concerned about the complications of the disease (e.g. infertility, sexual problems, and osteoporosis), and couldnt easily talk or even think about it:

I am so disappointed. Everyone dreams of having a baby. I cry when Im alone and think of it , that I cannot experience it naturally. When others are talking about children or I see a little child, I get even more disappointed (30's-40's, primary amenorrhea).

There were many cases of becoming aggressive, agitated and losing control over anger associated with POI, reported by the interviewees. The conditions associated with fits of moodiness in these women included rage, mood swings, impatience, and, as reported by some of them, introversion.

Before receiving the treatments, I experienced all those changes of temperaments, you know, you suddenly get happy and then, for no reason you start to cry. I was beginning to feel helpless because it hurt so much. (30's-40's, disease duration: 5 years)

Also, there was a large number of these women complaining about stress-related problems such as anxiety, tension, and lack of concentration while before having POI, they never had such an experience at this level.

I am anxious; I very much like to read a book but I just cant seem to be able to finish it because of all the anxiety I have. I am trying to tell you that I lack concentration. (30's-40's, disease duration: 4 years)

The leading causes of POI womens anxiety were as follows: losing health, having children, and getting married. Other causes had roots in physical effects of the disease, its economic burden, fear of future incidence of the possible related complications, and its turning into a chronic disease:

Im worried about getting married. Im afraid there will be no Mr. Right accepting me as a girl getting to menopause at an early age who cannot give him a baby. (30's-40's, disease duration: 4 years)

Subsequent to POI-induced infertility as well as menopausal complications, many women experienced negative feelings including hopelessness, emptiness, being cursed, and unhappiness:

I feel empty for being infertile. I cant enjoy real happiness why should I be that unlucky? My peers get periods and are healthier than me. (40's-50's, disease duration: 10 years)

The analysis of the experiences of women with POI yielded factors such as threatened identity and disease stigma, distorting their self-concept and adversely affecting their QOL.

Femininity was threatened by amenorrhea and followingly, infertility; as a consequence, women would experience feelings like deficiency, losing self-confidence, femininity defect, being different from other women, and embarrassment. Some women even resisted entering a relationship with the opposite sex:

I feel disabled; I am not an all-around woman anymore. Compared to normal women, I lack something. Its as if Im weaker than other women. I feel I am sterilized. (30's-40's, disease duration: 3 years)

The identity, and as a result, the maternal role of POI women who wanted to have children were threatened since they couldnt have the natural experience of a genetic mother. Their main concerns turned out to be: forced acceptance of a donor egg, the donor egg childs lack of resemblance to them, not being accepted as a mother by the child, and the egg donor claiming the baby.

I accepted the donor egg to save my marriage, but there are some things to worry about. What if the child leaves me because I am not his/her genetic mother? What if the egg donor shows up and claims the baby one day or another? (30's-40's, initial amenorrhea)

POI had caused an undesirable self-image in women making them feel aged, withered, disabled during intercourse, and with deteriorated self-confidence as a result of breast sagging and poor fitness. One of the women explains:

A woman with POI is like a flower withered before blooming. I feel so old; it is as if I am too old for my age. Im not youthful anymore, Im withered. (30's-40's, disease duration: 4 years).

Another interviewee states that:

I feel like old women when I have to take calcium pills at this age to maintain strong bones. (30's-40's, disease duration: 5 years)

Most of the participants resorted to concealment due to the disease stigma. The afflicted women and the donor egg receivers intended to hide the disease and the donor egg from others. Also, some women reported feelings of isolation after having POI.

One of the problems I have with the diseases is that I have to hide it because I dont like anyone to find out about it. You need to make believe that you are fine while having it with you. (20's-30's, disease duration: 2 years)

The interviewees reported that they suffered consequences of the disease stigma such as being judged, being labeled, being blamed, looking pathetic, peoples scornful look, and the bad reputation of the disease.

I kind of feel like its becoming a drawback for me and my husband is using it against me. The moment something comes up, he brings it up and then its me with egg on my face. (30's-40's, disease duration: 6 years)

As a symptomatic therapy influencing the QOL, hormone replacement therapy (HRT) was administered to POI women. Two main categories emerged out of the participants experiences, i.e. positive or desirable effects, and negative or undesirable ones.

I take medicine to regulate my menstruation. My period is regular now and I have no hot flushes. I dont think of how it affects my health (40's-50's, disease duration: 3 years)

I have gained lots of weight since I took the medicines. Now, I have stopped using them by myself. I couldnt swallow the pills. I was fed up with them. (30's-40's, disease duration: 5 years)

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An exploration of factors affecting the quality of life of women with primary ovarian insufficiency: a qualitative study - BMC Blogs Network

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