How do I know if I have PCOS?

As an egg donor agency, we see many young women interested in becoming donors who carry the diagnosis of polycystic ovary syndrome (PCOS). PCOS can impact your fertility, so egg donors who are found to have this diagnosis should be informed and educated about it. In this post we will address the diagnosis and fertility concerns related to PCOS.

PCOS is a hormonal disorder common among women of reproductive age. Women with PCOS are diagnosed when they have two of the following three signs or symptoms: (1) irregular or absent menstrual periods, (2) excess male hormone (androgen) levels or clinical signs of acne or hirsutism, and (3) the presence of ovaries with an excess of cysts. Any two of these three conditions constitute the diagnosis of PCOS. It is important to evaluate several other endocrine conditions related to the thyroid gland, the adrenal gland and the pituitary gland that can mimic PCOS. While other clinical conditions may be associated with PCOS, they do not contribute to its diagnosis. For example, women with PCOS have an increased risk of developing type II diabetes, may struggle with weight gain and may have abnormal cholesterol levels. These conditions are not considered diagnostic for PCOS.

A normal menstrual cycle occurs every 25-35 days. Women with PCOS can have bleeding that is less frequent or altogether absent. Alternatively, they can suffer from extremely heavy and chaotic bleeding episodes that can lead to anemia. This all reflects the absence of ovulation (release of an egg) that normally controls the proper growth and shedding of the uterine lining. When this cyclic ovarian function (ovulatory cycles) is absent, the result is menstrual irregularities. The most common solution for this is oral contraceptives (or birth control pills). These pills can control the lining of the uterus the same way a normal menstrual cycle would, thus controlling the irregular bleeding episodes.

While all women have some circulating androgens (or male hormones) in their bloodstream, women with PCOS have an elevation of these hormones. This can be detected either by a blood draw, or in the presence of clinical features such as acne or male-pattern hair growth (hirsutism). The latter condition refers to the presence of hair growth in typically male locations, such as the upper lip, the chin (where a beard would present) or in the sideburn area. Women often will pluck or shave this hair on a daily basis. Many treatments for acne exist. However, birth control pills have been found to be an effective means of treating both the hirsutism and acne issues. Further, newer cosmetic techniques can be useful in the permanent removal of this hair.

Polycystic appearing ovaries are the final diagnostic sign. These follicles are positive in that they each carry an individual egg. But in the absence of spontaneous or predictable ovulation, women often require medications to induce ovulation. This can be problematic in PCOS patients because multiple eggs may develop causing an increased risk for multiple gestations.

Fertility treatment for PCOS involves inducing ovulation. First line treatments are typically oral medications, such as letrozole or clomid. Combined with ultrasound monitoring and timed intercourse, pregnancy rates should reflect age associated fecundity (or chance of pregnancy). If these do not result in ovulation or pregnancy, then injectable medications can be used. These injectable hormones are the ones most commonly associated with high order multiples. Thus, in any given treatment cycle, a woman may be faced with having to cancel a cycle to avoid having multiple mature eggs releasing at once. One way to minimize the risk of multiple gestations is to control the number of fertilized embryos available for implantation. Newer technologies such as INVOcell (a less aggressive form of IVF) can increase the rate of pregnancy, while minimizing the risk of multiple gestations.

More questions regarding PCOS or egg donation? Ask them here and share with a friend in need!

De-Identified vs. Known Donor: What Feels Right?

Whether you’re becoming a parent using donor eggs or becoming an egg donor, it is important to decide whether "de-identified," previously known as "anonymous donation" or "known donation," is right for you. Deciding the option you are most comfortable with should be done prior to either choosing a donor or being matched as a donor because it will help narrow down the matches available to you. But before being able to choose, it is important to fully understand what each option means.

The most common option when it comes to egg donation is de-identified donation. We now call “anonymous” donation “de-identified” because the advances in technology, such as facial recognition, and entities, such as 23&Me, make remaining completely anonymous as a donor almost impossible. That being said, de-identified donation is the idea that neither the recipient nor the donor know any identifying information about the other party.

The recipients will have general family and personal medical history of the donor, some photos, and possibly some personal facts, such as favorite color, but will not know the donor’s name, address, place of employment, school, etc. The egg donor will also not know the recipients’ names, addresses, family histories, etc. It is most typical when choosing de-identified donation that the recipient(s) and the egg donor will never speak or meet each other. Also in de-identified donation, it is usually expected that the donor will not know the outcome of her donation, have any information or contact with any children that are a result of her donation, and will not be contacted by the recipients in the future.

This option is generally chosen by recipients and donors because it allows the recipients to navigate how they would like to share or not share the details of their journey using donor eggs, and it allows the donors to help a family achieve their goal of having children without feeling pressured to have an active relationship with any future children conceived using her donated eggs.

One of the benefits of choosing de-identified donation is that there is often some leeway in what the terms of the donation include. For instance, some anonymous donors may be OK with a phone call or Zoom meeting with the recipients prior to her donation or be contacted periodically by the family in a de-identified way (usually navigated with a third-party coordinator from the agency) if they have medical questions. But in other cases, both the recipients and the donors can choose to have as little information about each other as possible.

Recipients and donors can choose boundaries they are flexible with and others they are not, which allows de-identified donation to be the option that most easily fits everyone’s needs.

Known donation is just what it sounds like. In this case, the donor and recipient either know each other beforehand, or have an open donation. This is the most common option with families that are using a relative or friend as their donor, or want to have an open donation with a donor they selected from an agency. When choosing known donation, there are less stringent FDA requirements, and more suggested guidelines.

For example, when using a known donor, you can use eggs from a donor located in a country that has a risk of Zika Virus, whereas in de-identified donation the FDA has restrictions on where a donor can come from.

Some families choose known donation because the intended mother wants to use a female family member as their donor, such as a sister or cousin. The baby will then have a genetic relation to her. Although this may seem like a great option if you have a family member who is willing to donate to you, it is important to consider the psychological implications of using a family member as a donor and establish boundaries before moving forward with the donation.

Sometimes families choose known donation because they would like to form a relationship with their donor, allowing the children to know how they were made, similar to an open adoption. Donors who choose to participate in a known donation often want to know and connect with the family that they are donating to so that they feel confident that any child resulting from their donation will have a great family life.

Whether you’re choosing known donation with a family member, friend, or a donor from an agency, there will be psychological screenings involved. Often there will be meetings with the psychologist both separately and as a group. This helps establish boundaries and open communication in addition to helping the parties navigate through the process in a way that keeps everyone comfortable. Although less common a choice than de-identified egg donation, known donation can be a great option for families that are growing using donor eggs.

Understanding all of your options when making such a life-changing decision is an integral part of ensuring that your egg donation journey as a recipient or donor is a positive one. When working with Fertility Lane, or with any agency or clinic, you should always feel supported and heard when it comes to deciding your donation options.

Listening to your needs and desires and presenting you with viable options is our goal, and we are committed to providing you with the best possible donor options that fit those needs.

-- Vivian DeLima, Donor Coordinator, vfanderson@lanefertility.com

Breaking the Barriers to Infertility Treatment: Finding the Right Clinic

When women and men start thinking about family-building, they are rarely planning to visit a fertility clinic. It is not uncommon to have a few questions for your OB/GYN or primary care provider, but most people think that their need for answers will stop there. As a result, it is overwhelming and confusing for most people when they are met with the idea of having to find a fertility clinic to assist with next steps.

One of the most basic issues is identifying the right clinic for you. The goal for every person starting their family building is to end with a baby, but the process of getting to that goal looks different for everybody; the same can be said for choosing a clinic.

The first step in choosing a fertility clinic is scheduling an initial consultation. Prior to going to your consultation you may experience some anxiety and have many different questions and thoughts bouncing around in your mind: “Do I really need to be seen at a fertility clinic?” “Is another year of trying on my own really going to be detrimental?” “Why can’t I continue to work with my OB/GYN?” “I don’t know anyone else that is experiencing fertility issues!” “What if I end up needing IVF?”

But, the most important question to ask yourself going into an initial consultation is: “Did the doctor ease these anxieties?” The initial consultation is as much of an interview opportunity for you as it is an opportunity for the physician to understand your journey and needs. If you do not leave the consultation feeling supported, heard, and cared for, that is an excellent sign that you need to have a consultation with a different fertility clinic.

You should go to as many consultations as you can until you find the doctor and clinic that leaves you feeling as though you have a confident plan of action and that you are a person that matters to them with unique needs and experiences.

Another factor to consider is the type of healthcare experience that you want to have: Either a large or small practice. For many patients, a large, academic center feels safe, and patients are willing to sacrifice an intimate interaction with providers for a known entity in the community.

I live in the Northern California area and some of the larger providers here are Kaiser and UCSF. These entities perform thousands of cycles each year. Some patients choose this care because they have been in their health systems for large periods of their lives and had good experiences, as well as the comfort of knowing that these centers already have access to their previous medical records.

For the average fertility patient, a larger fertility center that is part of a large medical practice may be the right choice. There is no question that the programs will be appropriately licensed and the physicians will be appropriately credentialed, but on the other hand, these programs tend to be inflexible, with more of a “one-size-fits-all” mindset. All of the treatment plans and possibilities will have to be in line with the institution's approved policies and procedures.

While most of their practices are based in peer-reviewed studies, it can be frustrating for the patient with a unique scenario that would benefit from trying a different option that might work better for them.

Wait times for initial consultations and then to cycle through treatment at large institutions can be months for each step, which can be concerning since it is known that intervals of more than three months can and do affect a woman’s fertility.

Cost is also less flexible with less likelihood of sliding scales for payment and more rigid fee schedules. That said, some of the large institutions are able to negotiate better rates on medications and outside services, and are also more likely to be broadly contracted with multiple insurances.

If looking into a small, intimate practice it is important to keep in mind that there are often less providers to choose from. Although this may be concerning to you, the benefit in this is that you know who you will work with and can develop a strong bond with that person.

Additionally, the staff will likely know you personally when you walk through the door (even if they are masked). However, if you find that you do not click with the provider, then you may need to find a new location because there may not be options for you to transition to within the practice.

Smaller intimate practices are usually more flexible with appointments, fee schedules, start times and treatment protocols. For instance, at Lane Fertility, we rarely take more than a week to see a new patient and generally start them with a cycle within a month.

One of the most common complaints from my patients who transition from larger practices is that it took months to get an appointment, and that they were on waitlists to begin a treatment cycle. Another advantage of working with a small clinic is the physician/team is often more accessible. My patients know that they can get in communication with me and/or our clinical coordinators any time of the day or night. They know that I will stop to spend extra time with them if an issue arises, but that they may wait for me if someone else has that issue and needs more time.

While we have rigid systems in place to keep our clinic running efficiently, we are more equipped to make changes and adjust accordingly to meet our patients’ needs. We are contracted with many insurances, but not as many as our colleagues at UCSF. As a smaller practice, we are able to partner with programs such as the Marin Community Center and offer care to patients who would otherwise not have access, all of which lends to a diverse and accessible practice for patients.

The cost of care is also an integral part of choosing a clinic. For patients that have fertility benefits through their insurance, it is important to find out what exactly is covered by that insurance, and what will need to be paid out of pocket, as well as find practices that work with your insurance. For example, many insurance programs will cover IVF, but not egg donation or gestational surrogacy. Many insurance companies, such as Progyny (with whom we do not work with at this time) and Kindbody (who we do work with) will partner directly with employers and provide a list of providers that are contacted to see the patients.

The benefit to the patient with fertility insurance is that they have very little money to exchange while receiving their fertility benefits. This can be one source of stress-relief in the fertility process. More traditional insurance companies, such as Blue Cross, Blue Shield, Aetna and UnitedHealthCare will provide services as per your employer’s package, but be prepared to pay large co-pays and realize that some clinics will not take insurance at all. Nonetheless, the data is clear that overall, fertility benefits will improve access for many patients, even though it does limit the volume of clinics you can choose from.

The reality right now is that most patients do not have fertility benefits through their insurance. For these patients, small practices, such as Lane Fertility, are able to find programs that will assist them like Compassionate Care, ReuniteRx, Heartbeat, and others. Additionally, we can help coordinate medical financing programs, such as United Medical Credit, and discount our services to match other discounts that they receive.

The last thing to keep in mind when considering cost is not every quote that you get from the clinic will include all services, so make sure that when comparing clinics that you are comparing the same services at each clinic. Ask about add-ons and request a financial consultation to ensure that you have a firm understanding of your financial liability. Although not the most important factor when choosing a clinic, understanding the finances associated with fertility is crucial.

In the end, the most important message to take from this is that you deserve to find and have the type of care that makes you comfortable, especially when your going through something as uncomfortable as infertility. There is no right or wrong in your choice, there is only what works best for you. I see too many patients who have stayed in a healthcare relationship that didn’t work for them, which makes them bitter and rarely brings success to their journey.

It is important to break this cycle! In the end, sometimes you will need to invest in more than one consultation to ensure that you have enough information to make the right decision in selecting a fertility clinic. You must be able to trust that you have the right partner to be able to forge ahead and build your family!