American College of Embryology

Miracle Babies: Chapter 13 Finding Out Why You Have Never Had a Period                      Send Link
Female Fertility
Finding Out Why You Have Never Had a Period

Nothing is quite as distressing as being "different." And not having your first period by the time you are sixteen (primary amenorrhea) falls into this category, especially if you have not developed breasts and pubic hair as your friends have. I'm told that the girls' locker room can be just as intimidating as the boys'.

However, delayed puberty is only one aspect of this menstrual disorder. Many other factors ranging from anatomical abnormalities to genetic defects can prevent the onset of menses.

Categorizing Primary Amenorrhea

It's quite likely that if you have never menstruated, you've already consulted with your physician about which of the four categories of primary amenorrhea you fall into. You may, however, be unaware of some of the new options you may have for bearing your "own" child. The road to your "happy ending" will depend on which of the four categories you fall into:

  1. Women who have a normal uterus and ovaries: If your reproductive organs are normal, you have a hormonal problem which developed prior to your going through puberty: empty sella syndrome, pituitary tumor, adrenal tumor, polycystic ovarian disease, and so forth.

    In some rare cases your problem may stem from an anatomical abnormality: you may have been born with an imperforate hymen (closed vagina); with cervical stenosis (closed cervix) or without a vagina. These problems affect about 40 percent of women with primary amenorrhea.

  2. Women who have a normal uterus with nonfunctional ovaries: You may have a normal uterus, but have ovaries that do not contain any eggs (germinal cells). These problems affect about 30 percent of women with primary amenorrhea.
  3. Women who have a nonfunctional uterus with functional ovaries: You may have normal ovaries and a nonfunctional uterus. These problems affect about 20 percent of women with primary amenorrhea.
  4. Women who have no uterus and no ovaries: You may have no ovaries and no uterus. These problems affect about 10 percent of women with primary amenorrhea.

Treatment Options for
Women with Primary Amenorrhea

Normal Uterus and Ovaries
If your reproductive organs are normal, but hormonal problems are keeping you from menstruating, the treatments for hormonal imbalances outlined in chapter 12 will probably restore your fertility. Should your hymen or cervix be closed to the outside, a minor surgical procedure will open them to allow menstrual flow. If you were born without a vagina but have a normal uterus, hysterectomy will usually be necessary to prevent a painful buildup of menstrual blood that can destroy the uterus. Your ovaries will not be removed and will enable you to use in vitro techniques to harvest your eggs and fertilize them with your husband's sperm. Pre-embryos will then be transferred to a gestational surrogate who can carry the pregnancy.

Normal Uterus with Nonfunctional Ovaries (No Eggs)
If you have a normal uterus and nonfunctional ovaries, your FSH will be elevated, indicating that your pituitary is working overtime to stimulate follicular development. This may be because you were born without any eggs (Turner's syndrome) or because, due to an enzyme defect, your ovary cannot respond to FSH stimulation (resistant ovary syndrome). I can confirm that you have a normal uterus with an X ray (Hysterosalpingogram).

Even though your chance for having a baby seems hopeless, studies indicate that with the proper hormonal supplement, you should be able to nurture a donor embryo in your womb.

Joe and Toni H. decided to use donor eggs to achieve a pregnancy. They used Joe's sperm to fertilize the eggs retrieved from a donor who remained anonymous. I transferred three embryos to Toni's uterus after providing the necessary hormones. After a few weeks of pregnancy, her placenta provided all the necessary hormones. You may wish to read more about donor embryo transfers in chapter 21.

Nonfunctional Uterus with Functional Ovaries
If you have normally functioning ovaries, you can have your own baby. One particular couple comes to mind: Gary and Bridgette D. Although her ovaries were perfectly normal, Bridgette's uterus had not developed properly. Gary and Bridgette decided traveled to Pennsylvania to undergo in vitro fertilization. Her sister agreed to carry the pregnancy and had three of the pre-embryos transferred to her uterus. Three weeks after the second try, they received a call telling them that they had made a miracle baby.

With in vitro fertilization techniques a doctor can surgically retrieve (harvest) your eggs, mix them in a petri dish (in vitro) with your husband's sperm, and transfer your living embryo to a surrogate mother's womb for gestation. Nine months later you can take home your own baby for a lifetime of joy.

Although these medical techniques are feasible today, many unanswered legal and ethical questions have been preventing widespread use.

Uterus and Ovaries Absent
If you have no uterus and no ovaries, you have several options for having a child. You cannot have a child genetically related to you, because you have no eggs to pass on your genes. A surrogate mother, however, can offer you the opportunity for having a baby who is genetically related to your husband. Using artificial insemination techniques, your husband can father the child and you can adopt it from the surrogate mother.

Another option you may wish to consider is adoption. Once they receive their "chosen" baby, many couples who suffer through years of unsuccessful infertility treatment often wonder why they waited so long before choosing adoption. Adoption can be a very satisfying happy ending.

Most women with primary amenorrhea can be helped. Women with hormonal imbalances can have them corrected; women with eggs and no uterus can "hire" a gestational surrogate; women with a womb and no eggs can give birth using donor oocytes; and women with no reproductive organs can consider a surrogate mother relationship. With the aid of "miracle medicine," nearly all of the women with primary amenorrhea can look forward to a happy ending.

Click here to read chapter 14, The Road to Successful Ovulation
or go to the Miracle Babies Online Table of Contents

For more information on your initial visit to your physician read the
INCIID Routine Fertility Workup

Miracle Babies and Other Happy Endings
for Couples with Fertility Problems
Copyright 1986 Mark Perloe M.D., and Linda Gail Christie.