Pregnancy
Dr. Nanette Santoro's POF FAQ

32. Will I ever be able to conceive with my own eggs?

There is about a 10% chance of conception on your own over the next ten years (not great odds, but not zero, either). There is a small chance that you can conceive on your own, without any medical intervention and regardless of HRT use. It's about a 10% chance over 10 years' time. HRT provides you with estrogen, which your body needs at your age. You would be prone to several disorders and probably have unpleasant symptoms without it. HRT will lower your FSH, but that does not mean anything with regard to your ovarian function. Your FSH IS an indicator of ovarian function when you are not on hormones, but the level is meaningless while taking HRT. A given FSH level on a given day will not tell you your 'prognosis'. It's like taking a snapshot of your speedometer in your car and assuming that that's what it's doing now, when it is parked in your driveway! FSH changes too dynamically to be of great use as a predictors of what you will be doing in the future.

33. What are my chances of becoming pregnant?

It may not be encouraging to you, but long-term studies of women with POF indicate that about 10% of them have babies all on their own, without fancy treatments, and not including things like egg donation. Your age is in your favor, since you are relatively young. Many women are also considered to have POF without being actually amenorreheic. That means, without periods for at least 6 months. If you are still cycling, our chances of pregnancy are probably better than 10% but it is not predictable who will get pregnant or when she will get pregnant.

There's very little information. In lengthy series of women with POF, about 100 women in each series, about 1 in 10 women got pregnant. You are more likely to get pregnant if you are younger, that is, under 35 at the time of diagnosis, than if you are older. There's not other outstanding or obvious feature of the women who get pregnant that lets me predict it any better.

It's still hard to tell from a single FSH what your chances for pregnancy might be. Your age, time to diagnosis, and length of time you have had no periods at all will all have an impact on your ability to get pregnant.

34. What can I do to improve this odds?

There isn't much that can be done to influence the course of POF. If you are a smoker, QUIT NOW. Smoking reduces ovarian function and accelerates a woman's course towards menopause. It reduces fertility overall and will make menopausal symptoms, such as hot flashes, worse. Your age is on your side, if you are young, but the time that you have had POF makes it less likely that you will be able to conceive. There have been numerous studies looking at all kinds of treatments for POF--none of them work when they are attempted in a scientific manner. FSH levels can fluctuate over a very wide range, and not mean much of anything. If your ovaries recover temporarily, your FSH will go down, but following FSH levels in the hopes of predicting a recovery doesn't work. Your ovary can sometimes start to recover before FSH goes down, and that makes it almost impossible to call. You'd have to check it every day.

35. So what can I do, or take to help get pregnant. Is there anything to be done?

The only thing you can try to do, it to be heads-up when your ovaries recover, if they are going to recover! You can achieve this if you and your husband are sexually active (at least twice a week) without doing anything else, really. If you're going to ovulate, you are likely to 'hit it' if your sexual frequency is in that range. If you are not naturally that active, then you may want to try and become more aware of cervical mucus changes (natural family planning books have this information in them--they can help you 'find' rather than avoid, your fertile period). Otherwise, there is no treatment that has been shown to improve the outcome of women with POF. Another alternative would be to try and see if you would like to be part of any experimental studies. Dr. Larry Nelson at the National Institutes of Health is active in researching POF and trying methods to get women to ovulate with this disorder.

36. My MD said nothing will work except donor eggs. Is there anything I can do to increase my chances of getting pregnant?

If you have not been getting any periods without hormones, then you really do have POF, and your chance of getting pregnant is about 10% over the next ten years. While that's not encouraging, it's not zero, either! Attempts to produce more eggs or tweak the very few remaining ones in your ovary into action with medications, IVF, etc., have not proven to be of any help to women with POF. Despite the fact that it sounds like a good idea, it's not any better an option than just waiting and trying to get a treatment-independent pregnancy.

37. How effective is egg donation for POF women?

Since so many women with POF are given the advice that this is the "only way to go" the impression exists that it works 100%. Nothing in the world works 100%. I have seen couples go through 3 and even 4 egg donation cycles, looking like perfect candidates, and not get pregnant. The ups and downs of IVF are very difficult to weather. In general, POF patients undergoing egg donation have the best pregnancy rates in everyone's IVF program, so doctors tend to be enthusiastic. Most ovum donation programs have success rates of about 50% or better per attempt.

38. I am currently taking HRT, if by some chance I do become pregnant, what happens if I don't realize I am pregnant and keep taking the HRT? When would I be alerted to a possible pregnancy?

There's two answers to your question. The easy, simple answer is that women with POF who take cyclic hormones get pregnant at the same rate as women with POF who don't take cyclic hormones and it doesn't seem to matter if the progestin is Provera or exactly how much of it you take. So it's probably not a big problem. However, the second layer of the question is: what if you were to ovulate on your own and were scheduled to take a poorly timed course of Provera? Could this have a negative impact on a possible pregnancy? No one really knows the answer to that, but for my patients who have this concern I will sometimes go to a less frequent course of Provera, like once every three months, and now I like to substitute Prometrium for the Provera because it's a more natural form of progesterone and may be less of a problem.

39. Is there any way to indicate if/when ovulation is about to occur? How you could tell if you are ovulating?

It's very difficult to do when you are on hormones. I have tried many tricks with different patients and I have to say that none of them have worked. You can have periodic ultrasounds, but they are expensive and usually you don't see anything that is helpful. You can try to check our cervical mucus production, and if it increases dramatically (and you don't usually have a lot on the estrace) then, that is another clue that you might be ovulating. That's the only trick that has seemed to work for my patients.

A temperature chart can help you tell that you have ovulated. You will not know that you are about to ovulate, so it does not help with timing of intercourse but it does help in telling you if you have ovulated.

40. What are the success rates for having a live birth with a donor egg for a women with POF?

The success rate depends upon several things. In general, it is excellent, and national success rates have been rising on the average over the past 5 years. You ought to be able to expect about a 50% chance at most programs, and some programs have even higher success rates, up to about 70-80%. The very high success rates usually involve a high risk of multiple pregnancy and may put you in the position of facing something like a multifetal pregnancy reduction. Shop around carefully. Adoption is still a safer option, because egg donation always involves a gamble. There is no guarantee that you will get a baby.

41. Is it possible to use a sibling as an egg donor? If so, do you advise against it?

Some doctors may shy away from sibling egg donors because there has been a negative experience with sibling SPERM donors. However, the clinical and psychological outcomes for egg donors are different than sperm donors, and the limited outcome information that we have on this issue is quite positive. On occasion, some egg donors who are sisters will also have latent POF and will respond poorly to stimulation. This creates a crisis for the donor, who now finds out she may not be normally fertile. About 1 in 10 sister donors can have this problem, so it deserves to be considered up front. There are also nonsupportive sibling relationships in which using a sister as a donor is not a great idea. This can usually be discovered through appropriate psychological screening.

So when you consider all the unknowns involved in using anonymous donors, it seems to me that sibling donors are a very good bet and I have had excellent clinical experience with them.

42. Can estrogen increase my chances of getting pregnant?

Estrogen will not help you get pregnant. Estrogen will replace the estrogen your ovaries would be making if you didn't have POF. There is good scientific evidence that estrogen does not help to make pregnancy happen. There is little control over the ovaries once the diagnosis of POF has been made, but a substantial number of women will start cycling intermittently without any apparent rhyme or reason. No known medication will prod this process along, despite the predatory advertising you might read or hear about thorough commercial enterprises or unscrupulous medical practices at the 'Entrepreneurial Fringe'

43. If 1 in 10 women do get pregnant, how many of these women have successful pregnancies?

There is almost no information on long-term pregnancy outcomes. My own clinical experience is that there is not an unusually high miscarriage rate. The clinical information on women with high FSH levels IS that they have more miscarriages, though.

44. I want to get pregnant, should I take Birth Control Pills as a source of HRT?

Birth control pills are often a very acceptable option to provide replacement hormones in women with POF. However, they also provide BIRTH CONTROL. In the event that your ovaries recover and might be able to ovulate and get you pregnant, the Pill will prevent pregnancy and you will never know that your ovaries have recovered. Depending upon what your goals are, the Pill may or may not be appropriate for you. It sounds like lower dose hormone replacement, that does not appear to suppress ovulation, would be a better choice for you.

45. Having never been on the pill, could that have made me "use up" my eggs faster than someone who was on the pill? Does the pill keep women from ovulating, thereby "saving eggs" for later use?

There used to be a belief that the pill helps you 'save' eggs, but that does not seem to be true. If a woman stays on the pill for many, many years, her menopause may be delayed a bit, but only by a few months. SO it's not a very effective way to save eggs. The pill does NOT make you use them up any faster, though.

46. I have heard repeatedly that a woman diagnosed with POF has an approximate 10% chance of intermittent ovulation/pregnancy. I have also been told that some people with POF have no eggs left while some do, yet most doctors will not do the test to determine this since no medical treatment is available either way. Why is this distinction not made when stating probabilities for pregnancy, i.e. if you have eggs left, chances are up to 10% but you may not have any left and if this is the case the 10% does not apply? Can you please tell me what you know about this whole area of no eggs vs. some eggs? Is it known approximately what % of women with POF do actually have eggs left vs. not? Is complete depletion of eggs in women with POF the result of different causes of POF than with those who appear to have some eggs left?

The reason no one can make it clear to you whether you have eggs left or not is that in most, if not all postmenopausal women (in their fifties and sixties), there is evidence, if you look very carefully at ovaries that have been removed for a variety of reasons, that there are always a couple of eggs left. Therefore, it is likely that, anatomically speaking most women with POF have stuff in their ovaries that could be identified as eggs. That's why none of the ways one might think to look that would make sense (like by taking a biopsy at laparoscopy or doing repeated ultrasounds or even taking an ovary out and checking for eggs) are useful. Doctors have stopped doing those sorts of things because they don't tell us (or you) what you want to know. The real question is: of what remains in the ovary, why doesn't it respond to the usual known signals that eggs or follicles respond to and how might we be able to make better odds for women with POF?? It's a question that I have pondered and tried to answer with the information I have from my research patients. SO have all the others docs on this bulletin board, I'm sure, but there isn't a satisfactory answer. I have not seen the likelihood of recovery to be any better or worse with different forms of POF. The biggest predictor is age. Women over age 35 with POF seem to have a worse chance of pregnancy. It's frustrating.

47. I have been told that IVF is unlikely to succeed due to my high FSH. Do you agree?

An FSH level does not define the condition of POF. If it is high, it tells you that your 'reserve' is low in your ovaries and that you have a limited amount of time in which to get pregnant. It also tells you fertility drugs are not likely to work well for you, which you have already found out. It doesn't mean you can't ever get pregnant, but if your FSH is in fact elevated, it means it is less likely to happen for you and may be a difficult process.

IVF is usually a poor bet when the ovarian reserve is low. If your tubes are working normally sometimes medications can help to stimulate more than one egg to grow, but most treatments now available to enhance fertility are ineffective when the ovarian reserve is low.

48. I have read that egg freezing is experimental at this stage. What are the chances for the egg's survival in comparison to the embryo's survival?

I think that we can still count on one hand the number of viable pregnancies in the world that have resulted from egg freezing. The media frenzy is so great after each on these that it seems there are more, but there are not many more than that. Eggs freeze poorly. Embryos, on the other hand, freeze very nicely, and thousands if not tens of thousands babies have been born worldwide from that technique. It's primarily a technical issue and there are several people around the world working hard on figuring it out. As you can imagine, it will be a very popular thing to do for women with POF-related problems!