PCOS, 1 in 4!

By: Erica Ferraro

PCOS surpasses even the commonality of endo, affecting a staggering 20% of the female population worldwide. Astonishingly, such an important and prevalent topic is not addressed during the early education of young girls when they first learn about menstruation.

The Condition

PCOS, an abbreviation for polycystic ovarian syndrome (pronounced either as P-C-O-S or Pee-Kos), is a hormonal disorder that impacts women in their childbearing years. Its hallmark distinction from endo is the irregularity of menstrual cycles.

“Polycystic ovarian syndrome is a poorly named condition in that it does not mean that your ovaries have cysts. It means that your ovaries may be larger and have many tiny follicles located around the outer portions of your ovaries” – Natalie Stentz, MD, Fertility Specialist

PCOS is characterized by irregular or skipped periods, whereas endo is associated with regular but painful periods. Both conditions significantly affect female infertility and may coexist concurrently. It is not uncommon to encounter women who grapple with both conditions simultaneously. Individuals with PCOS may experience infrequent menstrual cycles or prolonged periods lasting several days. Additionally, they may exhibit higher levels of androgen, a hormone found in excess within their bodies. With PCOS, multiple tiny fluid-filled sacs known as cysts develop along the outer edge of the ovaries. These cysts contain immature eggs, which unfortunately fail to release regularly. The precise cause of PCOS remains unknown. However, early diagnosis, treatment, and proactive weight management can reduce the risk of long-term complications, such as type 2 diabetes and heart disease. PCOS can be diagnosed through blood work, an ultrasound, and a pelvic exam at your OB/GYN or fertility clinic.

The Symptoms

The onset of PCOS symptoms commonly emerge around the initial menstrual period, although in some cases, symptoms may manifest later after a time of regular menstruation.

The symptoms of PCOS vary. A diagnosis is established when at least two of the following indicators are present:

  • Irregular Menstruation: Infrequent or irregular menstrual cycles are a common indication of PCOS. Likewise, periods extending beyond the typical duration are also characteristic—for instance, having fewer than nine periods within a year or exceeding 35 days between periods. Difficulties in achieving pregnancy may also arise.
  • Excessive Androgen Levels: Elevated levels of the hormone androgen can lead to the development of unwanted facial and body hair, referred to as hirsutism. In some cases, severe acne and male-pattern baldness may also manifest.
  • Polycystic Ovaries: Enlarged ovaries with multiple follicles containing immature eggs may be observed, and their functionality may be compromised.
    • Notably, the severity of PCOS signs and symptoms tends to be more pronounced among individuals who are affected by obesity.

Underlying Factors

The precise cause of PCOS remains unknown, but several factors are believed to contribute to its development:

  • Insulin Resistance: Insulin, a hormone produced by the pancreas, facilitates the utilization of sugar, the primary energy source for cells. When cells become resistant to insulin’s actions, blood sugar levels may rise, prompting the body to produce more insulin to lower them. Excessive insulin production can stimulate the overproduction of androgens, the male hormones. This disruption in hormone balance can interfere with the ovulation process, which involves the release of eggs from the ovaries. Dark, velvety patches of skin in areas such as the neck, armpits, groin or under the breasts, along with increased appetite and weight gain, can indicate signs of insulin resistance.
  • Low-Grade Inflammation: White blood cells release substances as a response to infection or injury, leading to a condition known as low-grade inflammation. Research suggests that PCOS patients experience a chronic, low-grade inflammation that prompts the polycystic ovaries to produce excessive androgens. This inflammatory state can contribute to complications involving the heart and blood vessels.
  • Hereditary Factors: Studies indicate a potential link between specific genes and the development of PCOS. A family history of PCOS may influence an individual’s susceptibility to the condition.
  • Excess Androgen: The ovaries may produce elevated levels of androgen hormones. This hormonal irregularity disrupts regular ovulation, resulting in irregular egg development and the failure of eggs to release from the ovarian follicles. 

Potential Complications

  • Infertility: Difficulty in conceiving or achieving pregnancy is a common complication of PCOS. The irregular ovulation patterns and hormone imbalances associated with the condition can hinder the release of eggs necessary for fertilization.
  • Gestational Diabetes and Pregnancy-Induced Hypertension: Women with PCOS have an increased risk of developing gestational diabetes during pregnancy, which is characterized by elevated blood sugar levels. Additionally, pregnancy-induced high blood pressure can occur, posing potential risks to both the mother and baby.
  • Miscarriage or Premature Birth: PCOS has been linked to a higher incidence of miscarriages and premature births, further highlighting the complexities of fertility and reproductive health in affected individuals.
  • Nonalcoholic Steatohepatitis (NASH): NASH is a severe liver inflammation caused by fat accumulation in the liver. PCOS can contribute to the development of NASH, posing additional health concerns.
  • Metabolic Syndrome: PCOS is associated with an increased risk of developing metabolic syndrome, a cluster of conditions such as high blood pressure, elevated blood sugar levels, and unhealthy cholesterol or triglyceride levels. Metabolic syndrome significantly heightens the risk of cardiovascular diseases affecting the heart and blood vessels.
  • Type 2 Diabetes or Prediabetes: Insulin resistance, a common feature of PCOS, can lead to the development of type 2 diabetes or prediabetes. These conditions impact the body’s ability to regulate blood sugar levels effectively.
  • Sleep Apnea: PCOS has been linked to an increased risk of sleep apnea, a sleep disorder characterized by interrupted breathing patterns during sleep. This can lead to daytime fatigue and other related health complications.
  • Mental Health Challenges: PCOS can contribute to mental health issues such as depression, anxiety, and eating disorders. The complex interplay between hormonal irregularities, physical symptoms, and emotional well-being can impact the overall quality of life for individuals with PCOS.
  • Uterine Lining Cancer (Endometrial Cancer): The hormonal irregularities associated with PCOS can increase the risk of developing cancer in the uterine lining.

Treatment Approaches

The management of PCOS revolves around addressing the specific concerns that trouble you, which could include infertility, excessive hair growth, acne, or obesity. Treatment methods may involve a combination of lifestyle adjustments and medication.

Lifestyle Adjustments

Your healthcare provider may suggest weight loss through a low-calorie diet and moderate exercise. Even a modest reduction in body weight, such as losing 5%, can improve your condition. Weight loss may enhance the effectiveness of prescribed medications for PCOS and aid in addressing infertility. Collaborating with a registered dietitian and your healthcare provider can help determine the most suitable weight-loss plan for you.

Medication:

To regulate your menstrual cycles, your healthcare provider might recommend:

  • Combination birth control pills: These pills contain both estrogen and progestin, which can reduce androgen production, regulate estrogen levels, and mitigate risks associated with endometrial cancer. They can also address irregular bleeding, excessive hair growth, and acne.
  • Progestin therapy: Taking progestin for 10 to 14 days every 1 to 2 months can help regulate your periods and provide protection against endometrial cancer. However, progestin therapy does not improve androgen levels or act as a contraceptive. If you wish to avoid pregnancy, alternative options like the progestin-only minipill or progestin-containing intrauterine device are more suitable.

To stimulate ovulation and enhance your chances of becoming pregnant, your healthcare provider might recommend:

  • Clomiphene (Clomid): This oral anti-estrogen medication is typically taken during the early phase of your menstrual cycle.
  • Letrozole (Femara): Originally used in breast cancer treatment, this medication can stimulate the ovaries.
  • Metformin: When taken orally, metformin, primarily prescribed for type 2 diabetes, can improve insulin resistance and lower insulin levels. If clomiphene alone does not result in pregnancy, your provider might suggest combining it with metformin. Metformin can also slow the progression from prediabetes to type 2 diabetes and assist in weight loss.
  • Gonadotropins: These hormone medications are administered through injections and can be utilized if other methods prove ineffective.

In cases where excessive hair growth or acne is a concern, your healthcare provider might recommend:

  • Birth control pills: These pills can decrease androgen production, addressing excessive hair growth and acne.
  • Spironolactone (Aldactone): This medication blocks the effects of androgen on the skin, reducing excessive hair growth and acne. However, spironolactone can cause congenital disabilities, so effective birth control methods are necessary while taking this medication. It is not recommended during pregnancy or if pregnancy is planned.
  • Eflornithine (Vaniqa): This cream slows down facial hair growth.
  • Hair removal techniques: Electrolysis and laser hair removal are permanent options. Electrolysis involves inserting a tiny needle into each hair follicle and sending an electric current to damage and destroy it. Laser hair removal employs concentrated light to remove unwanted hair. Shaving, plucking, or using hair-removal creams are temporary alternatives, but hair may grow back thicker.
  • Acne treatments: Various medications, including oral pills and topical creams or gels, can help improve acne. Discuss suitable options with your healthcare provider.

“PCOS, although a common fertility issue, really can cause a slew of other health issues, hence why a delay in diagnosis and treatment should be avoided. This  can be explored with a primary care physician, even before seeing an RE, as hormonal irregularities, along with cholesterol, blood pressure, and BMI are regularly monitored as part of treatment for this condition.” Sarrah Bair MSN, FNP-C, Family Medicine and Women’s Health

The bottom line is this: PCOS is a common female health condition, is a leading cause of infertility and, many times, the need for pregnancy intervention through assisted reproductive technologies. Whether you are trying to conceive or not, discussing symptoms with your doctor is never a bad idea.

If you resonate with any of the above, you are not alone. This is a prevalent condition that impacts many women worldwide.

Adenomyosis, Endo’s Not-So-Sweet Sister

By: Erica Ferraro

Wait.. there’s a sister? Is she cool?

NO. She’s awful. And she’s really great at disguising herself as other female health conditions, going underdiagnosed and misunderstood at large.

Adenomyosis (adeno) and endometriosis (endo), both conditions affecting the endometrial tissue within the uterus, exhibit distinct characteristics and present varying symptoms.

In the case of adenomyosis, there is an abnormal growth of endometrial-like cells within the uterine muscles. These displaced cells adhere to the menstrual cycle, resulting in monthly bleeding. This leads to thickening of the uterine wall, often accompanied by pain and heavy menstrual bleeding. Typically, this condition affects individuals in older age groups and has recently been linked to infertility.

On the other hand, endometriosis involves the growth of endometrial-like cells outside the uterus. This tissue is commonly found on the ovaries, the supporting ligaments of the uterus, and within the pelvic cavities. Similar to adenomyosis, these cells follow the menstrual cycle and cause monthly bleeding. Consequently, this can result in pain and potential impacts on fertility. Endometriosis typically manifests in adolescents and individuals of reproductive age. See my article on endo to learn more here.

It is possible for an individual to experience either one or both of these disorders. A study conducted in 2017, involving 300 women diagnosed with adenomyosis between 2008 and 2016, discovered that 42.3 percent of these individuals also had endometriosis.

What are the similarities and differences in symptoms?

The symptoms of adenomyosis and endometriosis, including pain, can range from mild to severe.

However, it is worth noting that some individuals with endometriosis may not experience any symptoms (silent endo), while approximately one-third of women with adenomyosis remain asymptomatic.

Certain symptoms can overlap with those caused by other conditions, such as ovarian cysts or uterine fibroids.

The typical symptoms associated with each condition are as follows:

Adenomyosis:

  • Painful periods (dysmenorrhea)
  • Painful sexual intercourse (dyspareunia)
  • Chronic pelvic pain
  • Abnormal bleeding (metrorrhagia) or prolonged periods
  • Infertility
  • Enlarged uterus

Endometriosis:

  • Painful periods (dysmenorrhea)
  • Painful sexual intercourse (dyspareunia)
  • Painful bowel movements (dyschezia)
  • Painful urination (dysuria)
  • Pelvic pain
  • Fatigue, nausea, and diarrhea, particularly during menstruation

What Causes Adenomyosis?

The exact cause of adenomyosis is unknown. Some of the possible causes include:

  • Endometriosis: The endometrium (the lining of the uterus) grows into the myometrium (the muscular wall of the uterus)
  • Trauma that causes inflammation, e.g. childbirth
  • Stem cells invading the myometrium
  • Developmental anomalies from the time the uterus was first formed in the fetus
  • New evidence suggests that prolonged exposure to estrogen may be a contributing factor. Women may be exposed to more estrogen if their menstrual cycles are shorter than average or if they have been pregnant two or more times

What Are the Risk Factors?

  • Previous uterus surgery such as a caesarean
  • Fibroids removal (myomectomy)
  • Complications of dilatation and curettage (D&C)
  • Age – usually among middle age women, however, can be present in younger women who have not had children yet.

How is Adenomyosis Diagnosed?

There are several other uterine conditions that can present similar signs and symptoms to adenomyosis, which makes diagnosing adenomyosis a challenging task. These conditions include leiomyomas (fibroid tumors), endometriosis (uterine cells growing outside the uterus), and endometrial polyps (growths in the uterine lining).

To reach a diagnosis of adenomyosis, your doctor will first need to rule out other potential causes for your signs and symptoms.

The suspicion of adenomyosis by your doctor may be based on the following factors:

  • Observing signs and symptoms associated with the condition
  • Conducting a pelvic examination that reveals an enlarged and tender uterus
  • Utilizing ultrasound imaging or magnetic resonance imaging (MRI) of the uterus
  • Occasionally, your doctor may perform an endometrial biopsy (collecting a sample of uterine tissue) to exclude the possibility of a more severe condition. However, an endometrial biopsy does not assist in confirming a diagnosis of adenomyosis.

While pelvic imaging techniques like ultrasound and MRI can identify indications of adenomyosis, the only definitive way to confirm the diagnosis is by examining the uterus following a hysterectomy.

How is Adenomyosis Treated?

The resolution of adenomyosis often occurs naturally after menopause, which means that the treatment approach may vary depending on how close an individual is to this stage of life.

There are several treatment options available for adenomyosis, including:

  1. Anti-inflammatory drugs: Your doctor may recommend anti-inflammatory medications like ibuprofen (Advil, Motrin IB, and others) to manage pain. Taking these medications one to two days before your period begins and continuing during your period can help reduce menstrual blood flow and alleviate pain.
  2. Hormone medications: Combined estrogen-progestin birth control pills, hormone-containing patches, or vaginal rings may be prescribed to alleviate heavy bleeding and pain associated with adenomyosis. Progestin-only contraception, such as an intrauterine device (IUD), or continuous-use birth control pills can induce amenorrhea, the absence of menstrual periods, which might provide relief.
  3. Hysterectomy: In cases where severe pain persists and other treatment options have not been effective, your doctor might recommend surgery to remove the uterus (hysterectomy). It is important to note that removal of the ovaries is not necessary for controlling adenomyosis.

If the above information resonates with you, discuss the possibility of adeno with your OB/GYN or fertility clinic.

*information for the article has been sourced from the Mayo Clinic

When Time Plays Tricks: Understanding Premature Ovarian Insufficieny

By: Erica Ferraro


Did you know that sometimes your ovaries can go on strike before you hit 40? It’s called primary ovarian insufficiency (POI) or premature ovarian failure (POF), and when it happens, your ovaries don’t play by the rules anymore. They stop producing enough estrogen and releasing eggs regularly, making it a challenge to have a little bundle of joy.

Don’t Confuse It

Now, let’s clear up some confusion. Primary ovarian insufficiency is not the same as premature menopause. With primary ovarian insufficiency, your periods can go haywire for years, and guess what? You might still have a chance at pregnancy. But if you’ve got premature menopause, infertility is likely.

The Estrogen Hero

Now, here’s the good news. Restoring estrogen levels for women with primary ovarian insufficiency can save the day by preventing complications like osteoporosis. You don’t want those bones feeling weak and brittle, right?

Signs to Watch Out For

If you find your periods playing hide-and-seek or going MIA for months, it’s time to pay a visit to your healthcare provider. Your menstrual cycle can be affected by various factors, but it’s best to get checked out. Low estrogen levels can mess with your bones and put your heart at risk.

Common symptoms include:

  • Irregular or skipped periods, which might be present for years or develop after a pregnancy or after stopping birth control pills
  • Difficulty getting pregnant
  • Hot flashes
  • Night sweats
  • Vaginal dryness
  • Dry eyes
  • Irritability or difficulty concentrating
  • Decreased sexual desire

Causes Unveiled

Primary ovarian insufficiency has a few tricks up its sleeve when it comes to causes. It could be genetic, with some chromosome changes throwing things off balance. Chemotherapy and radiation can also be the culprits, damaging your cells and making your ovaries call it quits. Toxins like cigarette smoke and viruses might also join the party.

Risk Factors and Complications

Unfortunately, some factors can increase your chances of experiencing primary ovarian insufficiency. Age is a sneaky one, with the risk rising between 35 and 40. But hey, it can even happen to younger women or even teenagers, although it’s quite rare. Family history and ovarian surgeries can also up the odds.

Now, let’s talk complications. Infertility can be a tough blow for those with primary ovarian insufficiency. Osteoporosis can sneak up on you, thanks to those low estrogen levels making your bones weaker than a house of cards. Plus, losing estrogen early on might increase the risk of heart disease.

Proactive Measures: Exploring Reasons for Missed Periods

So, keep an eye out for those ovaries and take care of your hormonal health. After all, a little estrogen can go a long way in keeping you feeling your best!

If you haven’t had your period for three months or longer, make an appointment with your healthcare provider. Reasons for missed periods can include pregnancy, stress, or changes in diet and exercise. It’s important to find out the underlying cause. Don’t ignore changes in your menstrual cycle, even if you’re okay without having periods. It’s essential to identify the cause.

Beneath the Surface: The Enigmatic Diagnosis of Diminished Ovarian Reserve

By: Erica Ferraro

Diminished Ovarian Reserve (DOR) holds a special place in my heart, as it became a part of my life soon after I turned 30. It was during the infertility blood work at my fertility clinic that I received this diagnosis. I remember eagerly awaiting the call from my doctor, hopeful that with answers, we could find a solution to all our struggles in trying to conceive. Little did I know what awaited me.

DOR is a condition where there are fewer eggs in the ovaries compared to others of the same age. It can make getting pregnant more challenging, but it doesn’t mean it’s impossible. Fertility treatments offer hope, but the chances of success vary for each person. In my case, I was told I had a 5%-10% chance of success with IVF using my own eggs. The odds depend on factors like age, genetics, and sometimes, luck. As we age, our egg count naturally decreases, but for some, like me, it happens earlier than expected, leading to DOR. It is believed that my egg quantity and quality was destroyed through years of pelvic inflammation due to my undiagnosed endometriosis. Endometriosis is one of the leading cause of DOR amongst women of varying ages.

Doctors diagnose low ovarian reserve through ovarian reserve testing. However, having diminished ovarian reserve doesn’t mean you can’t get pregnant; it just means it might be more difficult, and fertility treatment could be considered.

Women are born with a set number of eggs, and age is the most significant factor in determining egg supply. On average, the number of eggs throughout life looks like this:

  • At birth: 1 to 2 million eggs
  • At puberty: 300,000 to 400,000 eggs
  • At age 40: 25,000 eggs
  • At menopause: less than 1,000 eggs

These numbers can vary from person to person, and only a healthcare provider can estimate the number of eggs based on ovarian reserve testing.

I discussed in my article, Female Cycles, in Plain English, how women “dump” multiple eggs each month, as part of the natural culling process that occurs during each menstrual cycle. Understanding this process helps us see how we “run through” our eggs naturally, aside from medical diagnoses.

Despite the challenges, it’s important to know that pregnancy is still possible with diminished ovarian reserve. Only one egg is needed for conception, and getting pregnant relies on various factors, including egg quality, sperm quality, and the overall function of the reproductive organs. While some individuals with DOR may also have issues with egg quality, it’s not true for everyone. It’s crucial to consult with a doctor who can assess your specific situation.

For DOR patients, the journey through IVF treatments can be uniquely stressful because the success rates often depend on the quantity of eggs retrieved. With fewer eggs available, the hope lies in their quality, which can vary among individuals. This has led to numerous supplement and product companies marketing solutions for improving egg quality to target the vulnerabilities of DOR patients.

Symptoms of DOR are often absent, except for the inability to conceive after months or years of trying. Some may notice a consistently shorter menstrual cycle, experience hot flashes or vaginal dryness, which can resemble early menopause.

While aging is a common cause of low ovarian reserve, sometimes there is no clear cause, which can be frustrating for patients seeking answers. Genetic disorders, radiation or chemotherapy treatments, endometriosis, ovarian surgeries, autoimmune conditions, and primary ovarian insufficiency are among the known causes of diminished ovarian reserve.

Finally, it’s important to acknowledge that some individuals are born without eggs, have fewer eggs, or have poor-quality eggs. Understanding this reality and acknowledging that not everyone can have biological children is crucial. Just as some men are born without sperm or with poor-quality sperm, it’s essential to recognize that reproductive challenges can affect people of all ages and genders.

Take Control of Your Fertility: Assess Your Egg Reserve with These Steps

  1. Request Infertility Blood Work & Sonogram: Discover your egg reserve status by reaching out to a fertility clinic and requesting infertility blood work. Enhance your understanding further by scheduling a sonogram at the fertility clinic. This procedure allows the assessment of Anticle Mullerian Hormone (AMH) levels alongside a visual examination of the number of follicles on each ovary. This crucial step will provide valuable insights into your fertility potential.
  2. Interpret the Results: Once the blood work and sonogram are complete, consult with the experts at the fertility clinic. They will interpret the results, providing you with a comprehensive understanding of your egg reserve status.
  3. Take Informed Action: Armed with this knowledge, you can make informed decisions about your fertility journey. Whether you choose to explore fertility treatment options or focus on proactive fertility preservation techniques (egg freezing), you hold the power to take action towards achieving your reproductive goals.
  4. Empower Yourself: By actively participating in assessing your egg reserve status, you empower yourself to make proactive choices and navigate your fertility journey with confidence. Remember, knowledge is the first step towards empowering yourself on the path to parenthood.

It would have been critical in my youth, for someone to impart the truth that not all women possess the genetic blueprint for bearing children, just as some men are bereft of sperm. Knowing this information earlier in life would have helped me mentally prepare for the possibility of such a diagnosis. Having someone encourage me to test my egg reserve potential sooner, may have resulted in the freezing of my eggs, or, my endometriosis being diagnosed and addressed earlier before it destroyed my egg quality. Understanding that not all women can have genetic children due to various reasons would have been invaluable and pushed me to take action.

Hence why I share the tale of Diminished Ovarian Reserve—an intimate saga of hope and despair, of embarking upon a path strewn with uncertainty. It is a story that calls us to traverse uncharted territories, confront our vulnerabilities head-on, and to seek solace in the wisdom of others in this very niche community. Through the haze of confusion, we strive to unravel the enigma and to transform this journey from one of darkness to one of resilience and newfound understanding.

Erica was diagnosed with DOR in 2021. If you’d like to connect, follow or message on her personal Instagram page.

Infertility Support Resources that Feel Like A Lifeline

Infertility may not pose a direct threat to life, but I have personally experienced how it can profoundly alter one’s existence, making life feel unbearable at times. Regrettably, the impact of infertility on mental health is often overlooked and underdiscussed. Any individual who has undergone IVF treatment will attest that the emotional burden it carries far surpasses the physical injections or procedures involved. During the darkest moments of my life, I have found solace in the few remarkable online resources provided by fellow warriors and educators who bravely share their vulnerabilities, effectively representing the experiences of many. I firmly believe that the scarcity of such accounts stems from the inherent difficulty most people face in embracing vulnerability. This underscores the crucial need for more platforms like the ones mentioned, which empower individuals to share their stories and provide much-needed support in the realm of infertility and mental health.

I hope my blog can be a source of comfort to someone. Without the accounts below, I don’t know that I would have the strength and courage, to be speaking out myself.

Infertility Support

  • Infertility School’s Instagram offers a visual representation of all things infertility in a way that is comforting, educational, and easily shared with friends and family who may need help understanding the complexities of all things infertility.
  • Wanna Be Mama (Connie Smart) hosts an incredible YoutTube channel with videos spanning infertility content, support, and experiences. Not only is Connie an incredible online resource, but she will also connect with you directly via her Instagram page and answer any questions or fears you may have! Connie was one of the first accounts I found, and she walked me through many of my initial fears about using an egg donor.
  • Infertile Millennial has been one of my favorite infertility blogs and Instagram pages since the start of my own journey. Their content is super relatable, and they always seem to share exactly what a warrior needs, when needed, through their direct but cheeky graphics that many in the community enjoy sharing on their personal Instagram pages. They also have a podcast and some of the best infertility downloadable content for your phone/computer screen saver!

Donor Conception Support

  • Infertility Unfiltered has recently been a lifeline for me. The business was founded by Victoria Nino, who not only runs successful online support groups for women going through various types of infertility treatments, but she will also directly talk to you via her personal Instagram page, like she’s your personal cheerleader, rooting for you in your corner. Victoria is the mother of 2 egg donor-conceived children from two separate donors and advocates for all things infertility and alternate routes to parenthood. Her downloadable e-book, Why I am Glad My Eggs Didn’t Work, might be one of the best things on the internet. Seriously. Read it. You can also sign up for one of her virtual infertility support groups.
  • Dani Repsch’s Instagram is powerful; she is the mother of 2 egg donor-conceived children who advocates for donor conception normalization and acceptance. Many of her IG videos have gone viral and bring comfort to anyone considering the donor route, showcasing her real life and donor-conceived children.
  • Donor Child’s Instagram is the advocacy page of Emma Gronbaek, a nurse, author, and speaker who was conceived through sperm donorship. She utilizes her platform to raise awareness and normalize donor conception while providing the perspective of a donor-conceived child. She supports early disclosure and helps expecting parents talk to their donor-conceived children about their conception. Her website has a lot of wonderful resources for both expecting parents and donor children.

Connection to Other Warriors

  • IVF Got Buddies Instagram was one of the first online resources I found, and thank goodness! Without this account, I would not have met some of my very closest online IVF friends. The page strives to connect women who are going through IVF with “buddies” who are cycling or transferring around the same time. The account posts monthly in an attempt to connect warriors, both new and seasoned.

Infertility Fundraising Support

  • Gift of Parenthood is a not-for-profit organization helping future parents pave the path to parenthood. Their website has a lot of helpful information, ideas, and even grant giveaways. They can help you start a fundraiser to raise funds for your fertility treatments and also feature fundraisers on their Instagram page for current warriors.

“You are not alone, in your being alone”

Anonymous

Infertility Acronyms for the Newbies

Navigating infertility can be incredibly confusing, and it becomes even more complex when you engage in conversations with others who are also going through the same experience. I vividly recall being taken aback and wondering why these individuals seemed to be speaking a different language altogether. It’s true, the infertility community has developed its own unique set of acronyms, encompassing a wide range of medical diagnoses, medication protocols, and IVF terminology. Initially, these acronyms can leave your head spinning, but eventually, you come to realize their practicality, especially when you’re constantly engaging in conversations with other individuals who, like you, are exhausted from the journey. Speaking in acronyms simply becomes more convenient since you frequently discuss similar information with one another.

Welcome to your first lesson in infertility if you’re new to this journey! By familiarizing yourself with these acronyms, you’ll quickly sound like a seasoned veteran in no time, (IYKYK).

On the internet, you can find extensive lists, although you may not come across all of the accronymns frequently. I have compiled the following commonly used ones that I believe you will encounter most often.

AccronymnDescription
ACOGAmerican Congress of Obstetricians and Gynecologists
AdenoAdenomyosis
AHAssisted Hatching
AIArtificial Insemination
AOAnovulatory
ARTAssisted Reproduction Technology
ASRMAmerican Society for Reproductive Medicine
BCPBirth Control Pills
BetaA pregnancy test that measures the levels of hCG (pregnancy hormone) via blood work.
BFNBig Fat Negative, refers to a negative pregnancy test.
BFPBig Fat Positive, refers to a positive pregnancy test.
BMSBaby Making Sex
BOBBaby on the Brain, or thinking about having a baby all the time
BWBloodwork
CAHCongenital Adrenal Hyperplasia.
CBCycle Buddy, someone who either started the cycle with you, ovulated around the same time as you, or is planning to take a pregnancy test at about the same time as you.
DEDonor Eggs
DEIVFDonor Egg In Vitro Fertilization
DHEADehydroepiandrosterone, a common supplement taken to help with egg quality
DIDonor Insemination, as you would have with IUI along with a sperm donor
DORDiminished Ovarian Reserve
DPODays Past Ovulation
DPRDays Past Retrieval, or the number of days since you’ve had the oocyte (egg) retrieval during IVF treatment
DPTDays Past Transfer, or the number of days after embryo transfer in an IVF treatment or embryo donation cycle
EAEmbryo Adoption
E2 Estradiol, a hormone sometimes measured during fertility testing and treatment
EB, EMBEndometrial Biopsy
EDDEstimated Due Date
ET Embryo Transfer, done during IVF
EndoEndometriosis
FEFrozen Embryo
FETFrozen Embryo Transfer, referring to an IVF cycle using previously frozen embryos that have been thawed and then transferred
FSHFollicle Stimulating Hormone.
GSGestational Surrogate
hCGHuman Chorionic Gonadotropin
HSGHysterosalpingogram, an outpatient procedure that takes no longer than a half-hour. Iodine-based dye is placed through the cervix while taking X-rays. These X-rays help evaluate the shape of the uterus and whether the fallopian tubes are blocked
ICSIIntracytoplasmic Sperm Injection, used in IVF for manual out-of-body insemination
IMIntramuscular Injection
IUIIntrauterine Insemination
IVFIn Vitro Fertilization
LAPLaparoscopy
LHLuteinizing Hormone
LSCLow Sperm Count
M/CMiscarriage
MFMale Factor Infertility
OHSSOvarian Hyper Stimulation Syndrome
OPK, or OPTOvulation Predictor Kit or Test
PCO/PCOS/PCODPolycystic Ovaries, or Polycystic Ovary Syndrome/Disease.
PGPregnant
PIOProgesterone in Oil
POF/POIPremature Ovarian Failure, or Primary Ovarian Insufficiency
PUPOPregnant Until Proven Otherwise, used after an embryo transfer or IUI cycle before a beta test to confirm pregnancy
REReproductive Endocrinologist, a kind of fertility specialist.
RIReproductive Immunologist, another kind of fertility specialist.
RPLRecurrent Pregnancy Loss
SARTSociety for Assisted Reproductive Technologies.
SHGSonohysterogram, a fertility test, also known as a water-sonogram
SDSperm Donor
SISecondary Infertility, you were able to have one child or more before infertility
SMSurrogate Mother
SMBCSingle Mom By Choice
STIMSStimulating Hormones, usually referring to injectable fertility drugs
SubQ or SCSubcutaneous Injection
2WWTwo Week Wait
TESETesticular Sperm Extraction
TTCTrying to Conceive
TSTraditional Surrogate
U/SUltrasound

Did I miss any? Comment below!

Endometriosis, 1 in 10!

By: Erica Ferraro

Endometriosis, 1 in 10!

Endo-what? Unfortunately, many of us are unaware of this distressingly common and life-altering female health condition, even though it affects 1 in 8 women. Endo is a genetic and hereditary condition that women are born with. It is worth noting that endo is a leading cause of female infertility, including DOR. A formal diagnosis of endo can only be made through a laparoscopy surgery, which an experienced surgeon in endo excision techniques should always perform to minimize the risk of further harm to your ovaries and fertility functions. Unfortunately, there is no definitive cure for endo. However, various strategies and approaches are available to manage and alleviate the symptoms associated with this condition effectively.

The Disease

Endo is a painful disorder where tissue that would typically appear inside the lining of the uterus, called the endometrium, grows outside the uterus in places where it should not be. This tissue often affects the ovaries, fallopian tubes, and the pelvic lining. In rare cases, it can even be found beyond the pelvic region. Described as early as 1912, endo was documented as causing pulmonary lesions consisting of endometrial glands and stroma. In 1938, a woman with inguinal node endo with hemoptysis had a “lung tumor” that bled with every menstrual cycle. Since then, endo has been documented in the lung, bronchi, pleura, and diaphragm. These cases are rare, but have been seen amongst doctors who study endo.

With endo, the misplaced tissue thickens, breaks down, and bleeds like the endometrial tissue inside the uterus. However, since it has no exit route, it becomes trapped. When endo affects the ovaries, it can result in the formation of cysts known as endometriomas. The surrounding tissue becomes irritated, leading to the development of scar tissue and adhesions. These fibrous bands can cause pelvic organs and tissues to stick together, impairing their function. The scar-tissue fusion of critical fertility organs due to endo is a leading cause of sterility among women.

Due to a lack of awareness, misdiagnosis, and symptom overlap with other conditions, endo often goes undiagnosed, taking an average of 7-10 years to confirm. In my personal case, it took me 19 years for a proper diagnosis.

The Symptoms

The most common symptoms of endo include:

  1. Painful menstrual periods: Contrary to popular belief, experiencing pain during menstruation is not normal. If you rely on painkillers to get through your periods, it is essential to discuss the possibility of endo with your OB/GYN
  2. Chronic pain in the lower back and pelvis
  3. Pain during or after sexual intercourse
  4. Painful bowel movements or urination during menstrual periods
  5. Digestive issues like diarrhea, constipation, bloating, or nausea, particularly during menstruation
  6. Infertility

The Diagnosis

Endo is classified into four stages: minimal (stage 1), mild (stage 2), moderate (stage 3), and severe (stage 4). These stages indicate the extent of the disease, including the number, depth, and presence of cysts or scarring. For a formal diagnosis, laparoscopy surgery is necessary. In some cases, ultrasound scans may detect endometriomas on the ovaries, but this is typically more apparent in advanced stages, such as stages 3 and 4. It is important to note that infertility can occur at any stage, and the severity of symptoms does not necessarily correlate with the stage. 

There is even a condition called silent endo, with no overt symptoms, which affects around 20 to 25 percent of endo patients.

Organ Damage

Endometriosis shares overlapping symptoms with other conditions, particularly gastrointestinal issues like irritable bowel syndrome (IBS), which is why sometimes these issues are misdiagnosed when they are actually endo. Recently, there has been increased attention to endo affecting the bowels, leading to a higher likelihood of colo-rectal surgery during excision procedures.

History

Endo was discovered in the 1600s and first appeared in literature in 1860. Initially, doctors believed it was caused by retrograde menstruation, where period blood flows back into the fallopian tubes and becomes trapped. However, this theory has since been disproven. Additionally, the technique of ablation, or “burning off” the endo tissue, was once used, but the endo can more easily grow back with this method. Excision, or “cutting it out,” has proven more effective as it reduces the chances of regrowth and is the current standard of care for removing endo lesions.

My Personal Experience

I experienced my first period at the age of 11 and was utterly bewildered by the changes happening in my body. I vividly remember calling my cousin in tears because I was home alone and in excruciating pain. The agony persisted every month from the age of 11 until just one month before my 30th birthday.

Throughout my life, I heard stories about my Grammy’s terrible periods during her childhood. She would joke about her mother offering her a shot of whiskey before sending her off to school. I later discovered that my Grammy had endo. In those days, the only cure was a complete or partial hysterectomy, which rendered a woman infertile.

Growing up, I consulted various OB/GYNs about my period pain, but unfortunately, none of them educated me about endo. When I was dating my husband, he would jokingly refer to my painful periods as “monthly exorcisms” due to the extreme pain that left me contorted in different positions just to find relief. There were instances when the pain was so unbearable that I feared a trip to the hospital. Nausea would often accompany the pain, and it caused significant monthly anxiety.

Birth control was never suggested to me by any of my doctors to control the pain, only to ensure I “didn’t get pregnant,” so I never used it as I felt it was better to “just use condoms” and keep my body hormone-free.  I now understand that being on birth control is an effective way to manage endo, preventing its growth and damage to organs by suppressing your hormones and cutting off the endo’s food supply. There is no cure for endo, but there are certainly ways to control symptoms and prevent them from getting worse.

After a year of trying to conceive without success, I decided to consult a new OB/GYN as my period pain had reached an all-time high, and I was still struggling to conceive. Luckily, I found a specialist in endo-excision surgery who listened to my symptoms and finally validated them. He promptly performed a laparoscopy that lasted over three hours. During the procedure, he diagnosed me with Stage 3. He drained a large cyst from my right ovary, removed two deep lesions from my pelvic tissue, and had to remove my appendix, which was weeks away from rupturing due to endo-related damage. The surgeon informed me that 70% of endo patients have appendix damage that requires removal.

TIP: if you have concern for endometriosis, consider seeing a gynecologist with advanced training in minimally invasive gynecology (a separate 2 year fellowship after OBGYN training). These surgeons are experts in treating endometriosis in a way many general OB/GYNS are not.

Post-Surgery Impact

Since my excision surgery, I have not experienced a single ounce of period pain. It is as if it vanished into thin air! No more reliance on pain relievers or heating pads. Could this be what it feels like to have regular periods? It is truly remarkable!

Although there is a possibility of endo regrowth and the need for further surgeries, I am hopeful that with the help of birth control and an anti-inflammatory diet, I can slow down or even prevent its recurrence. By eliminating menstruation through the use of birth control to suppress periods, an endo patient can minimize internal blood trapping and reduce inflammation in the body; hence why a conversation with your doctor about laparoscopy, birth control options, and diet changes is critical in better managing your care.

Infertility Concerns

Endo is a leading cause of infertility due to the inflammation and damage it causes to vital fertility organs. If you’ve been diagnosed with endo and plan on having children, it is advisable to consult a fertility doctor regarding diagnostic testing and blood work to assess your anti-Mullerian hormone (AMH) levels and discuss the next steps. Your AMH levels are one indication of whether your endo has wreaked havoc on your ovaries, potentially damaging the egg reserve you have. Ovarian endo can correlate to low AMH levels or egg quantity/quality issues. It is never too early to gain a better understanding of your fertility, whether you are actively trying to conceive or not. 

Female Cycles, In Plain English

By: Erica Ferraro with Contributions by

Natalie Stentz, MD, Fertility Specialist

Alease Daniel Barnes, BS, Senior Embryologist

Sarrah Bair MSN, FNP-C, Family Medicine and Women’s Health

Most would assume that proper education on menstrual cycles is part of a standard health and wellness curriculum for pubescent girls while they are in middle or high school. Regrettably, when most of us reflect upon our experiences in health class, recollections tend to revolve around high-level details regarding menstruation, abstinence, sexually transmitted diseases, and, if fortunate, brief mentions of birth control. 

Women rarely have a comprehensive understanding of their menstrual cycle and the fundamental functions of their ovaries as they pertain to fertility, unless they happen to be dealing with fertility issues. This was me, until receiving my diagnosis of diminished ovarian reserve (DOR). I vividly recall experiencing a mix of astonishment and disbelief as my doctor detailed the inner workings of my ovaries. I found myself questioning the existence of ovarian follicles and the monthly release of multiple eggs. I am going to explain below what my fertility doctor explained to me and what I genuinely believe is the foundation for understanding fertility and your own body at its core.

“In the United States, we are lucky if we are taught how NOT to become pregnant, and nobody ever teaches you HOW to become pregnant, despite the fact that a majority of us will try at some time or another and potentially experience complications.” – Natalie Stentz, MD, Fertility Specialist

So here it is, period cycles in plain English! The lesson we all should have received when we were twelve. 

Every month, female bodies undergo preparations for potential conception, involving the selection of a specific cohort of eggs that ascend to the surface of each ovary and accumulate within tiny sacs called “follicles.” Typically, younger women possess more follicles on their ovaries, indicating more potential eggs available each month. While follicle numbers can exhibit slight variations from month to month, they eventually deplete entirely, corresponding to a diminished egg supply as menopause approaches.

Each follicle can contain a maximum of one egg, although it is possible for a follicle to be empty and lack an egg for a given cycle. The eggs within the follicles then engage in a competitive process “Hunger Games” style, vying for dominance to become the solitary “dominant egg” for that cycle. In cases where multiple eggs achieve dominance simultaneously, the outcome can be fraternal twins or triplets. The dominant egg ruptures through the ovary and travels into the fallopian tube, where fertilization occurs. The fertilized egg remains in the fallopian tube, undergoing cell multiplication for approximately 3-4 days until it develops into an embryo capable of descending into the uterus and implanting itself within the uterine lining.

Therefore, when someone undergoes in vitro fertilization (IVF), they aim to make a day 5, 6, or 7 embryo that can be transferred back into their uterus and hopefully implant itself in the uterine lining!

Typically, young healthy females serve up an average of 20-30 eggs per month as part of this battle for dominance (WHAT!? I know; this was also shocking to me), gradually depleting their egg reserve until exhaustion. Once this occurs, there is no mechanism to generate additional eggs, ultimately leading to the inevitable onset of menopause. The timing of this milestone can exhibit significant variation that is far more extensive than I realized, especially since I did not know that women are born with all of the eggs they will ever have. We do not make more. What we have, we have from birth, and our genetics, lifestyle, age and many other factors, will determine how those eggs, ultimately, deteriorate over time, until we have none left and enter menopause. 

Only mature eggs can undergo fertilization and progress into a viable embryo. Not all eggs present within our ovaries each month will reach maturity, as a natural culling or “dying off” process occurs before they attain the necessary size. This phenomenon prioritizes the dominant egg that prevails in the competitive process. 

In the context of IVF, medication administration via injection, versus any other kind of mechanism, is crucial in overriding our natural system and stimulating the growth of numerous mature eggs simultaneously in both ovaries. This can help a patient produce multiple mature eggs, creating multiple embryos and increasing the odds of pregnancy. The injections trick our body and brain into doing something unnatural during that cycle, which is simultaneously growing multiple dominant eggs for that month. 

“IVF does not “use up” all your eggs! Each cycle your body recruits multiple eggs, but typically only one gets ovulated. The rest die off and are reabsorbed by the body. The stimulation medications used during the IVF process help all of the eggs recruited for that cycle mature and have a chance at fertilization, where otherwise, they would have died off in a natural cycle. – Alease Daniel Barnes, BS, Senior Embryologist

So, there you have it; many eggs are offered up each month during ovulation, but typically only one egg becomes the dominant egg available for fertilization. If that egg is mature, of good quality, and easily pairs with healthy, viable sperm, it can successfully implant into the uterine lining and grow. BOOM, pregnancy! If any of those variables are off (and trust me, I am oversimplifying it for the sake of this chapter), then, well, you have likely found my book for a reason!

Two prevalent female health conditions significantly contribute to infertility among women related to period cycles. I will discuss these more in-depth later, but what all of us should have been told in middle school is to look out for the symptoms of these two widespread female conditions that are not normal when it comes to period cycles. Neither is curable, but there are ways to preserve one’s fertility at a young enough age, curb the effects of the conditions for an overall better quality of life, and protect future fertility once correctly diagnosed. 

  • PolyCystic Ovarian Syndrome (PCOS): A regular menstrual cycle typically spans 25 to 35 days. Any deviations from this range, either shorter or longer, could indicate a missed period and should be brought to the attention of a healthcare professional. Such irregularities may point to PCOS, which affects approximately 25% of women (1 in 4) or potentially indicate other underlying health concerns.
  • Endometriosis (endo): Menstrual periods should not be accompanied by debilitating or severe pain. If period-related pain significantly hampers an individual’s ability to carry out daily activities, consultation with a medical practitioner is advisable. Pain during menstruation stands as the primary associated symptom of endo, which affects around 12.5% of women (1 in 8).

 “Women (and men) are disserviced from early in life by not being taught what a normal vs an abnormal period should look like. How many men and women are aware that the ovaries and fallopian tubes aren’t actually attached? That there are numerous types of ovarian cysts, the most common being a benign byproduct of the menstrual cycle? That debilitating pain associated with monthly cycles leading to missed days of work or school is not “normal?” Sarrah Bair MSN, FNP-C, Family Medicine and Women’s Health

The key takeaway is that your periods should come consistently each month and should not be painful. If you are experiencing either or both symptoms, speak to a doctor and request further testing. Do not accept the age-old adage, “periods just suck, so suck it up.” Not diagnosing and addressing female health conditions early in life can have life-altering impacts on later-in-life fertility, and that is a fact. 

IVF Must Have’s for the Modern Mama in Waiting

If you’re about to start infertility treatments, you’re probably feeling overwhelmed with the amount of products you’re being told are the “must have’s” of a stress-free cycle. Below are the products that got me through multiple rounds of IVF, and continue to be products I love to use!

  • 40 oz Stanley Water Cup: Sorry not sorry, this product is truly not overrated. I’ve lovingly referred to my “Stan” as my “emotional support cup” but either way, you’ll definitely stay hydrated and that’s necessary when going through infertility treatments!
  • Shot Organizer: A simple tackle box can make the world of a difference in being organized when you receive your shipments of IVF medication.
  • 3X Per Day Pill Organizer: Between the COQ10, DHEA, Vitamin D, Prenatal Vitamin, Baby Aspirin, Calcium, Magnesium and every other supplement in the book, it goes without saying that a pill organizer is an IVF must-have! Especially when needing to take supplements/medication at different times during the day!
  • Round Ice Packs: FOR THE LOVE OF MENOPUR! If you know, you know. Icing 5 minutes before IVF injections can make a world of a difference in tolerating injections, some of which may burn/sting more than others.
  • Fun Shaped Band-Aids: If you need to purchase some Band-Aids, why not make it fun? I love these pineapple shaped ones, which represent the infertility community!
  • Buttery Soft Leggings: I’ve been living in these since the day I started IVF medications. They are soft, durable, and rival Lulu Lemon in both look and feel.
  • All Your Perfects by Colleen Hoover: Colleen Hoover is not only my favorite author, but, she also wrote an incredible fictional novel about a couple struggling with infertility for many years. This book made me feel seen and understood on a deep level.
  • Cozy Barefoot Dreams Socks: Perfect for transfer day, or whenever you want to stay warm and cozy! BFD has been a favorite brand of mine for a long time, and their socks are truly phenomenal!
  • Tula Rose Eye Balm Stick: For the days where you won’t feel your best or want to wear makeup, this product is one of my must have’s for those days when you want to look brighter, without makeup!
  • Felt Letter Board: For anyone who wants to document their journey, a letter board is basically an IVF right of passage.
  • Raspberry Leaf Tea: Commonly used to promote fertility and wellness.