Sweet’s Rules: Four simple rules I use each day to guide me as I diagnose and treat my infertile patients

During National Infertility Awareness Week, I’d like to share my four patient care rules. I made them up rather spontaneously nearly 22 years ago and I still use them each and every day when I am uncertain of what to tell a patient or how we should proceed.

Before the rules are invoked, it is most important to first understand what brings patients to my clinic. By understanding the causes of their infertility, I will better be able to tailor a treatment plan specific to their needs. Some patients feel this is a waste of time and want to proceed immediately to treatment, but I strongly recommend understanding the issues first before proceeding forward.

So, once the evaluation is complete, my Sweet’s Rules are used to guide us forward-

1. Get my patients pregnant as fast as I can

Time can be an enemy and patients are not necessarily patient. We need to complete the evaluation quickly and move forward as most of my patients wanted to be pregnant many yesterdays ago. Some will call this a “duh!” rule, but it is still a good one to keep me moving forward as the patient desires.

2. Achieve success in the most cost-effective manner possible

We always want to choose the least costly conception method. This might even mean sending the patients on a date to try natural means for a tad bit longer. Hopefully, the successful patient potentially saves a bundle by my guiding them away from costly alternatives. Sometimes, adoption is also the best option and I’ll send them down this new road, if it is needed, even if the practice loses a patient. My cardinal rule is to treat the patients like family and tell them what I would tell someone close to me, regardless of the gain or loss to the practice. Practicing this way has always served may patients well.

3. Minimize complications (i.e., no litters)

I took an oath to do no harm and I take that oath very, very seriously. A multiple pregnancy can be a million dollar pregnancy with complications too long to list here. Always pull back, no matter how much pressure from the patient, if I fear a complication is likely.

4. Minimize the use of procedures with minimal chances of success

This may be the most important rule. I do not like being a “Gynechiatrist” (borrowed from the movie “Knocked Up”) by performing procedures that are unlikely to work. While some patients need to try a procedure destined for probable failure, to have closure and the inner knowledge that they gave it a shot, I prefer to move quickly through these treatments and get the patient to understand what will truly bring them to their goal.

I tell patients these rules when I am trying to guide them through their treatment plan. I believe it helps them to understand why I am telling them something, especially when they don’t necessarily want to hear it. Understanding my motivations, I believe, helps them to appreciate that I truly have their best interests at heart. By following these simple four rules, I will always keep my patients’ needs first and foremost.

While I may not be successful with all my patients, I will always try my best, give them the best information I can and provide options that simply make sense. Interestingly, these rules help me keep on the path, as much as they simultaneously guide my patients, as we make decisions and travel the infertility to fertility journey together.

By: Dr. Craig R. Sweet

Medical Director & Founder

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Polycystic Ovarian Syndrome: A Review Written for Patients

How common is polycystic ovarian syndrome?

Polycystic ovarian syndrome (PCOS) is one of the most common endocrine diseases affecting about six percent of reproductive age women. PCOS is one of the main reasons women have difficulty conceiving. About half of all women who do not ovulate on a regular basis will be diagnosed with PCOS.

In recognition of PCOS Awareness Month, I've developed this review for patients dealing with this disease.

How is PCOS diagnosed?

As a syndrome, PCOS is a constellation of findings. Alone, it really is not a disease but simply a label. But physicians use these labels to our patients’ advantage. If we suspect PCOS, we will search for the problems that commonly accompany PCOS, minimizing their effect while possibly changing the course of the illness.

PCOS requires at least two of these three problems for a diagnosis:

  1. Ovulatory dysfunction: irregular cycles or blood progesterone levels that indicate failed ovulation.
  2. Ovarian hyperandroginism: excess male hormones including an unusual amount of facial/body hair or elevated male hormones, such as testosterone, in blood tests.
  3. Polycystic ovaries on transvaginal ultrasound: more than 12 small 3-9mm follicles within each ovary as seen on an ultrasound. At times, we will see the signs of a classic “necklace,” with small cystic follicles located on the periphery of the ovary and which look like a pearl necklace.

Clinically, there seem to be two main types of PCOS: 1) Patients who were essentially born with the problem and have never really had normal cycles, and 2) Patients who have had normal cycles but demonstrate symptoms as they gain weight. Upwards of 80% of all PCOS women are heavy, but 20% can be quite slender.

Other issues include thyroid problems, elevations of the pituitary hormone prolactin and a handful of rare inheritable enzyme deficiencies. These problems need to be screened for and ruled out before settling on the diagnosis of PCOS.

PCOS is probably the single most common diagnosis we see in our patients. Its incidence has been increasing over the last 20 years as the US population has shifted from normal weight to the overweight, obese and morbidly obese categories.

How do you diagnose pre-diabetes in the PCOS patient?

To diagnose insulin and glucose problems, commonly called pre-diabetes, we prefer a 10-12 hour fast with baseline glucose and insulin levels rather than fasting glucose levels alone. The endocrine system is then challenged by having the patient drink 75 grams of glucose (Glucola®), which is called a Glucose Tolerance Test (GTT). Two hours later, insulin and glucose levels are repeated to complete the study. We do not require blood tests every 30 minutes as some protocols suggest, since the fasting and two-hour results are sufficient.

Insulin resistance or actual diabetes is present in nearly half of all PCOS patients. The more the patient weighs, the more likely the diagnosis.

What really causes PCOS?

While many women believe their hormone imbalance is mainly caused by testosterone, insulin seems to be the key hormonal culprit. Excess insulin stimulates the ovaries to produce excess male hormones. Also, excess insulin predisposes the PCOS patient to numerous medial problems, including cholesterol elevation, hypertension and possibly heart disease. Insulin is the key.

How is PCOS best treated?

Treatment in the overweight PCOS patient includes diet, exercise, weight loss and aggressive prevention and treatment of pre-diabetes (insulin resistance and/or glucose intolerance).

Beyond this basic treatment, there are generally two treatment pathways: the “quality of life path” and the “pregnancy path”.

Quality of Life Path

PCOS patients who are not trying to get pregnant should follow the quality of life path and focus on treating the signs and symptoms. Because they don’t shed the inner endometrial lining on a regular basis, PCOS patients are at greater risk for abnormal uterine bleeding, anemia, endometrial polyps, pre-cancer and eventually, even cancer of the lining of the uterus. Hormonal control is used in this pathway. We also suggest aggressive treatment for hair growth, including the use of hormones, electrolysis or laser hair removal. The psychological affects of excess facial and body hair on women should not be minimized and may be the primary concern for PCOS patients.

Pregnancy Path

We recommend that PCOS patients who want to get pregnant use a winning combination of diet, exercise, weight loss and anti-diabetic medications such as metformin (Glucophage®) that are combined with ovulatory medications. Metformin helps in a number of ways including dropping male hormone levels in half and assisting in weight loss. Gas and diarrhea results when too many carbohydrates are consumed while taking metformin, so patients must learn to eat better to avoid the symptoms.

Our practice commonly uses letrazole (Femara®) to stimulate ovulation but sometimes we need to prescribe the old tried and true clomiphene citrate (Clomid®). We occasionally have to suppress the adrenal male hormones through the addition of dexamethasone. We need to be very careful about prescribing injectable follicle stimulating hormone (FSH) medications for PCOS patients since they tend to open the floodgates, resulting in a release of multiple eggs and the potential for a multiple pregnancy. Overstimulation of the ovaries can also lead to significant illness.

Miscarriages seem to occur more often in the PCOS patient. It may have to do with their weight and abnormal insulin levels. While somewhat controversial, even PCOS patients without obvious glucose/insulin problems may benefit from metformin treatment. It must be understood that while these drugs have been extensively studied in the treatment of diabetes, insulin resistance, glucose intolerance and PCOS, the FDA has not granted official approval for the use of these drugs for PCOS.

PCOS patients also more commonly experience gestational diabetes during pregnancy. Weight gain during pregnancy should be held in check as excessive amounts of weight gained can result in insulin dependent diabetes during pregnancy and even afterwards. Pregnancy complications are more common in patients with gestational and insulin dependent diabetes, so an obstetrician will need to carefully monitor a PCOS patient during her pregnancy.

What are long-term concerns for the PCOS patient?

Women with PCOS are at significant risk of developing insulin and non-insulin dependent diabetes mellitus, uterine cancer, elevated lipids, hypertension and cardiovascular disease.

Will a PCOS diagnosis and treatment be covered by insurance?

The coverage of PCOS will depend upon the insurance company. Your physician will try to emphasize the medical diagnoses that are seen with PCOS, such as an ovulatory dysfunction, hirsutism, glucose intolerance or insulin resistance, but coverage cannot be guaranteed. The diagnosis of infertility for the PCOS patient is less often covered but it entirely depends on the particular insurance plan. Medications such as metformin are commonly available free at some pharmacies and supermarkets, so co-pays aren’t even necessary to obtain the medication.

Can PCOS be cured?

In patients that have always had menstrual issues, even when young and slender, an actual cure has not yet been found. However, in the population who became symptomatic after weight gain, diet, exercise, weight loss and medications may actually result in a cure. This “cure” continues as long as the patient’s weight remains close to the level when ovulation and regular cycles returned.

PCOS is a metabolic disease and will require careful control for most patients throughout their lives. That doesn’t mean that the PCOS patient can’t have a family or will always have to suffer the symptoms. Through dedication by the PCOS patient with the assistance of your obstetrician/gynecologist or your friendly neighborhood reproductive endocrinologist, the signs and symptoms of PCOS can certainly be controlled and minimized.

Craig R. Sweet, M.D.
Medical & Practice Director
Reproductive Endocrinologist
Specialists In Reproductive Medicine & Surgery, P.A.

Documents of Interest to the PCOS Patient:

ASRM PATIENT FACT SHEET, Ovarian Drilling for Infertility
http://www.reproductivefacts.org/uploadedFiles/ASRM_Content/Resources/Patient_Resources/Fact_Sheets_and_Info_Booklets/OvarianDrilling.pdf

ASRM, Hirsutism and Polycystic Ovarian Syndrome, Patient Information Series
http://www.reproductivefacts.org/uploadedFiles/ASRM_Content/Resources/Patient_Resources/Fact_Sheets_and_Info_Booklets/hirsutismPCOS.pdf

ASRM, Patient Fact Sheets, Polycystic Ovarian Syndrome
http://www.reproductivefacts.org/uploadedFiles/ASRM_Content/Resources/Patient_Resources/Fact_Sheets_and_Info_Booklets/PCOS.pdf

ASRM, Patient Fact Sheet. Ovarian Drilling for Infertility
http://www.reproductivefacts.org/uploadedFiles/ASRM_Content/Resources/Patient_Resources/Fact_Sheets_and_Info_Booklets/OvarianDrilling.pdf

PCOS Links of Interest:

The PCOS Challenge:
http://www.pcoschallenge.com/

PCOSupport
http://www.pcosupport.org/

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Compassion, Understanding and Respect are Desperately Needed While We Discuss Three Important Perspectives on Gamete & Embryo Donation

I will admit that I was a bit overwhelmed with all that transpired recently on this blog.

My original goal to discuss the potential gender discrimination existing regarding the recommended ages for gamete donation was usurped into a rather emotional discussion on merits and evils of gamete donation itself. Some of the posts were so inflammatory that I have been advised by others to wipe out all the comments so as to do no harm to others that may eventually read them. For at least now, they will remain.

So many very complex issues were discussed simultaneously; some that were reasonable while others quite unreasonable and I was not even sure where to begin. To carefully start, I believe there are three perspectives that need to be better understood involving the gamete donor, the gamete recipient and the donor-conceived offspring.

The gamete donor’s perspective

Donors may donate for a host of reasons that may include monetary reimbursement, but nearly all will donate, at some level, so that individuals who might not otherwise raise a child can do so. Many donors will already have children or may have somehow been touched by infertility though a family member, friend, loved one, or even through media stories.

Some donate blood and/or their time and others donate their money. The difference with egg and sperm donation is that they involve individuals clearly giving a part of themselves. Do donors all understand the long-term effects of the donation? Perhaps some do, but not all. Do they wonder about the children their DNA helped to create? Perhaps, yes for some. Do they regret the donation? A vocal group will say “yes” but the many gamete donors who are content, at peace and even proud of their decision are silent in the wings, not feeling the need to make their past decision to donate known. Does that mean they are embarrassed by their past decision? Perhaps a few but I suspect most will simply state it was a private decision and not for others to judge or be involved in.

Was it wrong for them to have donated eggs or sperm as some might lead us to believe? I would emphatically answer “no.”

The gamete recipient’s perspective

Most patients who accept donated eggs and sperm do so reluctantly. Single women and same-sex couples may not have many options available to them and may enter the process more willingly. For the majority using donor gametes though, they are doing so because they or their partner are unable to use their own gametes to create and raise a child. Reluctance is the common denominator in their decision.

To simply state patients seeking donor eggs and/or sperm should adopt is naive. Many patients can’t adopt for a host of reasons including age, social situations, overall costs or personal medical history. Still, adoption is a viable option for some and infertile patients go through adoption all the time.

Others patients still want to experience pregnancy and birth. Is it selfish that they want this? I do not believe it is inherently selfish to want to experience something so basic in life as reproduction. It is a drive that goes to the core of all species. The reproductive process brings them and their partner (when they exist) closer in ways that are difficult to otherwise replicate. If one condemns reproduction using donated gametes as selfish, I suppose one should condemn all reproduction as basically selfish, especially when there are existing children who could be adopted. Many patients feel that reproduction comes close to an inalienable right that is not to be interrupted or disturbed by those who disagree.

Patients that reproduce using donated gametes are not “social parents,” as some would like us to believe while trying to diminish the importance of these parents. They are parents in every sense of the word. As I have written before, being a parent has to do with being there emotionally, physically and financially for future decades to come. Being a genetic parent may only take a few quick minutes of sexual activity. I will state the genetic contribution is important, but in the scheme of things, only a very small part of the creation of a child and a family.

DNA does not a family make – it is only part of the equation.

The donor-conceived offspring’s perspective

This is where the issues of gamete donation become so complex. As I have written before, I feel that my field has not paid enough attention to the perspectives of these individuals because they were never our patients. In fact, their very existence would not be was it not for our work bringing donors and recipients together. As a result, we have an inherent responsibility to donor-conceived offspring, having assisted in their creation.

Is it better that they never should have been conceived and born, eventually experiencing all that the world has to offer? I don’t see how that could ever be thought of as true. Inherent good is created when these special individuals grace our world.

Do they have a right to know their genetic background? Perhaps they do have a moral right to know, but this frequently comes into conflict with the right of privacy of the gamete donors and recipients. Would I want to know? I think the answer is “yes.” If I were a recipient of a donated gamete, be it eggs, sperm or both, would I want to be able to make the decision about telling my donor-conceived child? I also think the answer is “yes.” So, how can we possibly reconcile these potentially conflicting rights?

We need compassion, understanding and respect.

Compassion

We need to be better aware of how donor-conceived offspring feel. They will be curious about the donors. They will be interested in connecting with half-siblings, especially when they have no other siblings in the family in which they were raised. We need to consider how the donor-conceived offspring will tell their future or current partners about their genetic family. We need to understand that they will want to tell their own children about their ancestry.

Understanding

We need to better understand how disclosure will affect all parties involved. There is a great deal of angst and fear regarding disclosure with the recipients fearing most that their donor-conceived child or children will not love them anymore after they find out they were a product of gamete donation or after they connect with the gamete donor. We need to help move society and religion forward so donors and recipients will not be at risk for condemnation by friends, family or retaliation from their own religion. This will take a great deal of time and patience.

We need follow-up and well-designed research examining the effects of disclosure on all parties. Only by gathering information can we can share with donors, recipients and donor-conceived offspring the likely outcomes of disclosure and open-identity. We need to move from uncertainty to knowledge and from fear to hope.

Respect

There is a great deal of disrespect abounding on the topic of gamete donation and passions are running very high as was evident in the recent comments on my blog. The perspectives have almost become religious in character with extraordinarily narrow and unbending belief systems incapable of contemplating another viewpoint. Zealots want to indoctrinate all, bringing everyone to their own perspective, which they view as the only right one. We all need to take a step back and breathe. If we all realize that we are in this together, trying to do what is best dealing with all three perspectives, then we will work through our differences and come up with alternatives that will work best for the greatest number of people. We will never please the zealots but we can try to care for the greatest number possible.

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Possible solutions

I don’t pretend to have all the answers here and I’m not even sure I have asked the right questions yet. Having worked in this field for almost 23 years though, perhaps I have a perspective that could have some value.

Registry

A central registry, where information about donors, recipients and donor-conceived offspring could be stored, is an alluring concept but important practical issues abound. Who will pay for it, what information will be stored, who will have access to the data and will the information be truly secure are all questions that need to be answered before we undertake such a venture and before we put patients and families at risk. Understanding that we have already succeeded in collecting and reporting ART data though the CDC/SART, I do feel that we might be able to successfully build a data collection system for egg, sperm and embryo donation procedures. A multi-disciplinary discussion guided by the ASRM or a yet-to-be-formed special interest group is probably the best place to start working closely with our peers in other countries who have already initiated this process. I am concerned if we do not do this voluntarily, politicians who may have a meager understanding of the true issues will force it upon us.

Open identity

Creating gamete donation procedures with expanded open identity options would seem potentially to be the best of all worlds. It doesn’t mean that all donations must be open identity (i.e., it shouldn’t be mandated or legislated) for if we force this option on all, we take choice out of the hands of those involved and risk depletion of the gamete pools that are needed for so many.

I do not necessarily agree that open identity will be the answer for all of the problems but it could, most of all, benefit the donor-conceived offspring. Additional work must be done to also decide how and when the identity of the donor should be presented to the donor-conceived offspring. If we are creating an open gamete donation option for the children’s good, it is hard to argue that this information must not be released until they reach age 18 or 21. For the good of the child, having some sort of connection to the donor might indeed be best if initiated in the truly formative years and, certainly, before age 10.

Summary comments

Egg, sperm and embryo donation procedures are not inherently evil. They build families where they would otherwise not exist, an inherent good. We all need to better understand the three perspectives of donors, recipients and the donor-conceived offspring and, through compassion, knowledge and respect, work better together for the betterment of all the parties involved. This issue is a moving target and I beseech all those that feel so strongly on this topic to honor and listen to the opinions of others, understanding there is no right answer for everyone any more than there a single correct religion. I ask all to try to reign in all the emotion and focus this valuable energy towards discussion rather argument, compassion rather than condemnation, education rather than persuasion and respect rather than intolerance.

We have a long way to go but I feel we can get there together by understanding that each of us has much to learn from each other.

Craig R. Sweet, M.D.
Reproductive Endocrinologist
Moderator, www.SweetFertility.com

P.S. For those that would like to review a somewhat scholarly summary on disclosure in embryo donation from the perspective of the embryo donor, embryo recipient and the donor-conceived offspring, I encourage you to read one of my somewhat long, but comprehensive reviews on the topic by visiting my embryo donation blog by clicking here.

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