Chapter 4
Advocating for Yourself in the Doctor's Office
When dealing with gynecologic problems, it's challenging to articulate your experiences to healthcare providers. The first hurdle is determining whether your symptoms are actually abnormal, especially if you've experienced them since your periods began. Many people suffer for years with severe pain, heavy bleeding, or bowel issues because they've been told these symptoms are normal.
The key question isn't whether symptoms are common but whether they disrupt your quality of life, preventing you from working, exercising, or maintaining emotional well-being. Before medical appointments, track your symptoms, period patterns, pain levels, and triggers to communicate effectively with your doctor. Since appointments may be brief (often just 15-20 minutes), organizing your thoughts beforehand is crucial.
Track your menstrual history by noting: age when periods started, date of last period, cycle length and regularity, duration of bleeding, flow heaviness, presence of blood clots, breakthrough bleeding, and any associated symptoms like weakness or lightheadedness. Document pain by recording when it started, whether it began with periods or after a specific event, its frequency and duration, triggers that worsen it, quality (sharp, stabbing, burning), impact on your quality of life, and treatments you've already attempted.
Note any digestive issues like diarrhea, constipation, painful bowel movements, bloating, nausea, or changes in appetite that might be related to your gynecologic condition. Record urinary symptoms including urgency, frequency, pain, incomplete emptying, or urine leakage. Document any skin irritation, bumps, sores, or changes in vulvar appearance, as well as pain with sex, vaginal dryness, or discharge.
Track mood symptoms like depression, anxiety, mood swings, or irritability, noting their frequency, impact on quality of life, and whether they worsen before or during menstruation. Identify concerns about pain with sex, low libido, arousal difficulties, or inability to achieve orgasm. If experiencing pain, specify when it occurs-during arousal, with genital touch, initial or deep penetration, orgasm, or after sex.
Clarify pregnancy intentions-whether you want to conceive (and when), never want to become pregnant, or are actively trying (including duration, methods used, and treatments attempted). Prioritize your greatest concerns to focus your healthcare visits effectively. Clarify what you need from your provider-whether diagnosis, treatment options, education about a condition, or reassurance.
Chapter 5
Fibroids: The Silent Epidemic Affecting Most Women
Fibroids are extremely common benign tumors of the uterine muscle affecting up to 80 percent of Black women and 70 percent of white women by age fifty. While not everyone experiences symptoms, up to half develop distressing problems including severe pain, heavy bleeding, bloating, pelvic pressure, infertility, or miscarriage.
Also called leiomyomas or myomas, fibroids form when uterine muscle cells multiply rapidly, creating genetically identical clones. Stimulated by estrogen and progesterone, they typically begin growing in one's twenties and thirties and often shrink after menopause, though they may not disappear completely.
Fibroid symptoms depend on their size, number, and location. Fibroids can press on the bladder, rectum, and bowel, causing pregnancy-like sensations of bloating, urinary frequency, incontinence, and constipation. They can cause frighteningly heavy or prolonged periods, with large clots and pads soaking through in minutes. Beyond severe menstrual pain, fibroids can cause pain throughout the cycle and during sex. When fibroids outgrow their blood supply, they undergo degeneration-cell death that causes extreme pain.
A fibroid's location within the uterus largely determines its symptoms. Fibroids are categorized by their position: in the cavity (causing bleeding and fertility issues), within the muscle (causing various symptoms), or on the outer surface (primarily causing bulk symptoms and pain).
Black women have three times higher fibroid incidence than white women, with Hispanic women at twice the risk. Black women typically develop larger, faster-growing fibroids with more severe symptoms 10-15 years earlier than white patients. These racial disparities likely stem from complex interactions between genetics, environment, diet, and psychosocial factors like stress. Family history significantly increases fibroid risk, and social patterns emerge when fibroids run in families. Many women believe severe bleeding and pain are normal because female relatives experienced the same symptoms, delaying diagnosis and treatment.
Treatment options include medications for bleeding or pain control, and procedures/surgeries to shrink or remove fibroids. Medications include over-the-counter pain relievers like NSAIDs, hormonal medications like birth control, tranexamic acid to slow bleeding, and GnRH agonists and antagonists that can actually shrink fibroids by suppressing ovarian hormones.
Surgical options include uterine fibroid embolization (UFE), which blocks blood flow to fibroids causing them to shrink; myomectomy to remove fibroids while preserving the uterus; ultrasound-guided radiofrequency ablation to destroy fibroids with heat energy; and hysterectomy as a definitive treatment. Each approach has different benefits and risks, particularly regarding future fertility.
Chapter 6
Endometriosis and Adenomyosis: The Invisible Pain Epidemic
Endometriosis and adenomyosis are often invisible conditions with no definitive lab tests or imaging studies, leaving patients told nothing's wrong despite debilitating symptoms. With endometriosis affecting one in ten women and taking seven years on average to diagnose, patients frequently endure multiple specialists and normal test results while suffering extensive physical pain.
These conditions occur when endometrium-like tissue grows outside its proper location. In endometriosis, tissue grows outside the uterus-commonly between the uterus and rectum, on bladder or bowel surfaces, pelvic walls, ovaries, diaphragm, or even the belly button. With adenomyosis, tissue grows within the uterine muscle wall (myometrium). Both are extremely common, with endometriosis affecting at least 10% of women and up to 50% of infertile women.
Endometriosis and adenomyosis cause pain and symptoms by inflaming surrounding structures, affecting multiple pelvic organs and systems. They commonly cause bowel symptoms like constipation, diarrhea, pain with bowel movements, bloating, nausea, or rectal bleeding. Many patients are initially misdiagnosed with irritable bowel syndrome. They can cause urinary urgency, frequency, burning, or blood in urine, mimicking UTIs without bacterial infection.
Pelvic floor muscles surrounding the bladder, vagina, and rectum can become inflamed, causing pain during sex or exercise, and aching radiating down the legs. Inflammation of pelvic nerves can cause burning or shooting pains in the lower back, buttocks, and legs. Both conditions can cause systemic symptoms affecting the entire body, including severe fatigue or migraines.
Endometriosis significantly impacts fertility, with up to half of infertility patients having the condition. It can cause fallopian tube scarring, leading to conception difficulties or ectopic pregnancy risk. Both endometriosis and adenomyosis reduce IVF implantation rates and increase miscarriage risk, possibly from endometrial inflammation or egg quality issues.
Diagnosis requires surgical confirmation since no definitive lab test or imaging study exists. Tissue must be removed and examined microscopically to confirm the presence of endometrial cells outside the uterine cavity. Early endometriosis often doesn't appear on ultrasound as the disease starts as small flat spots too tiny to detect.
The gold standard for endometriosis treatment is excision-surgically cutting out affected tissue. Adenomyosis treatment presents unique challenges, as hysterectomy is typically required for complete disease removal. Medications for endometriosis and adenomyosis only suppress symptoms rather than eliminate the conditions. NSAIDs like ibuprofen and naproxen are recommended for pain control due to the inflammatory nature of these conditions. Hormonal birth control and progesterone pills often improve pain and heavy bleeding by suppressing ovulation and periods.
Many patients need more than surgery or medication alone for complete symptom relief. A holistic approach often provides excellent control of all symptoms, including pelvic floor physical therapy, dietary modifications, and mental health interventions to address the mind-body connection.
Chapter 7
Polycystic Ovarian Syndrome: Beyond Irregular Periods
PCOS affects 10 percent or more of those assigned female at birth, making it the most common endocrine disorder among women of reproductive age. This complex syndrome can affect appearance, weight, health, fertility, and mood. Despite its prevalence, PCOS remains poorly understood with more questions than answers, causing enormous frustration for sufferers.
The condition presents contradictorily-it can cause periods to disappear for months or cause persistent heavy bleeding. Even its name is misleading, as patients don't necessarily have polycystic ovaries to receive the diagnosis. PCOS is a hormone imbalance affecting ovulation and menstruation. As a syndrome rather than a specific disease, it presents as a constellation of problems including menstrual abnormalities, infertility, mood disorders, skin changes (acne and hirsutism), and metabolic issues (high blood pressure, high cholesterol, insulin resistance, diabetes, and obesity).
PCOS diagnosis relies on symptoms and physical findings rather than a specific lab test. The current diagnostic framework, known as the Rotterdam criteria, requires at least two of three features: 1) Oligo-ovulation or anovulation, manifesting as infrequent or absent periods; 2) Clinical or biochemical signs of hyperandrogenism, such as acne, excess facial/body hair, or elevated testosterone levels; and 3) Polycystic ovaries, identified by ultrasound showing twenty or more follicles or enlarged ovaries.
Being overweight or obese increases PCOS risk, though the relationship is complex. Body fat may contribute to hormone imbalances, but PCOS itself is associated with weight gain and difficulty losing weight, creating a chicken-or-egg situation. For overweight PCOS patients, weight loss can improve or resolve symptoms. However, many people have "lean PCOS," experiencing symptoms despite having normal or low body weight.
PCOS patients face higher risks of chronic medical conditions, abnormal bleeding, uterine precancer or cancer, infertility, depression, and anxiety. Without regular periods, PCOS patients can develop excessive endometrial buildup in the uterus. Irregular ovulation means less progesterone production, allowing endometrial cells to grow unchecked, potentially leading to polyps, precancer, or cancer.
No direct treatment exists for PCOS since its root cause remains unknown. Management focuses on addressing symptoms through a multidisciplinary team approach involving gynecologists, endocrinologists, fertility specialists, nutritionists, and mental health professionals. Treatment combines various medication types tailored to individual symptoms, including hormonal methods, fertility treatments, dermatologic treatments, and diabetes medications.
For those bothered by acne and excess hair, options include spironolactone (which decreases testosterone but risks electrolyte abnormalities), retinoids, antibiotics, and hair removal methods. Birth control containing estrogen helps by suppressing testosterone. For PCOS patients struggling to conceive, fertility specialists prescribe ovulation induction medications like letrozole or clomiphene.
Much of PCOS management happens outside medical offices through nutrition, exercise, and stress management-especially important given the increased metabolic risks. For overweight patients, losing just 5-10% of body weight can reverse symptoms and normalize hormone levels. With proper self-care and medical supervision, people with PCOS can regain control of their health and reverse many effects of the condition.
Chapter 8
The Hidden Connection: Pelvic Floor Dysfunction and Chronic Pain
Pelvic muscle spasm and dysfunction frequently cause pain and bowel/bladder symptoms but are often missed in diagnosis because they don't appear on imaging or lab work. These conditions require specialized pelvic exams to identify. They're especially common among military veterans with chronic pain, people with endometriosis, and those who've given birth.
The pelvic floor forms a muscular bowl connecting to the lower back, hips, and legs. These muscles maintain constant tension to support the pelvic organs and prevent prolapse. The levator ani muscle wraps around the vagina, urethra, and rectum like a sling, while obturator muscles stabilize the hip. The interconnected nature of pelvic muscles and nerves means symptoms often appear simultaneously-pain with sex, difficulty urinating, constipation, and chronic pain in the pelvis, lower back, legs, and hips frequently occur together.
Pelvic floor spasms manifest as aching, cramping, pressure, or burning sensations, sometimes with sharp, shooting nerve pain radiating to the legs or back. Myofascial pelvic pain creates trigger points that cause severe pain when touched during intercourse, tampon insertion, or exams. Vaginismus involves involuntary muscle spasms during penetration, often creating a cycle where anxiety about pain causes more muscle tension, worsening symptoms.
Pelvic floor dysfunction can cause urinary urgency, frequency, difficulty emptying the bladder, and leakage. Both overly weak and overly tense muscles create bladder control problems. Interstitial cystitis (painful bladder syndrome) is strongly associated with pelvic floor dysfunction and can mimic UTI symptoms without showing bacteria in tests. Tight pelvic floor muscles can cause severe constipation, straining, and painful bowel movements.
The primary treatment for pelvic floor dysfunction is physical therapy guided by specialized pelvic floor therapists, with medications sometimes used as adjuncts to help relax muscles or reduce pain. Pelvic floor physical therapy goes far beyond simple Kegel exercises, which can actually worsen dysfunction by causing further muscle spasm. Treatment is customized for each patient, combining stretching tight muscles, releasing trigger points, strengthening weak muscles, retraining normal function, and coordinating muscle activity.
Therapists may use biofeedback with sensors that provide visual or audio feedback, electrical stimulation to activate muscles, or vaginal weights. Manual release techniques might employ silicone wands to reach painful spots. For vaginismus, graduated dilators help gently stretch and relax the vaginal walls and pelvic muscles.
Medications can augment physical therapy but don't replace it. Options include oral gabapentin for nerve pain, certain antidepressants like amitriptyline for pain and bladder/bowel symptoms, and muscle relaxants like cyclobenzaprine for muscle spasm. Vaginal suppositories of these medications or diazepam (Valium) have fewer systemic side effects but must be made by compounding pharmacies.
Chapter 9
Sexual Dysfunction: Breaking the Silence
Sexuality varies greatly between individuals, often constrained by religious and cultural factors that prioritize men's pleasure over women's satisfaction. Many people struggle to seek help for sexual health issues due to embarrassment or unawareness of treatment options. While up to 20% of American women report pain during sex and 40% experience other sexual dysfunction issues (particularly during perimenopause and menopause), many receive unhelpful advice like "just relax" or "have wine" from healthcare providers with limited sexual health training.
Sexual health involves complex physical, mental, emotional, and social factors, requiring comprehensive care approaches. The main criterion for treatment is the person's level of concern-decreased libido might distress some but be normal for asexual individuals who naturally lack sexual attraction or interest.
Healthcare providers use questionnaires covering three main categories: pain with sex, sexual desire/arousal, and orgasm. Key questions about pain include: When does pain occur (with touch, penetration, orgasm, after intercourse)? When did it start (after childbirth, injury, menopause, medication, treatment)? What type of pain is it (sharp, burning, stabbing)? Where is it located (vulva, vaginal opening, walls, deep pelvis)?
Sexual health problems fall into four interconnected categories: pain with sex, low libido/desire, difficulty with arousal, and anorgasmia. These issues often influence each other, such as when pain leads to poor libido or inadequate lubrication causes painful intercourse. Pain during sex can involve various pelvic structures beyond just the vagina. Causes include hormonal changes (menopause, testosterone use, birth control), physical or psychosocial trauma leading to vaginismus, neurologic disorders affecting pain processing, endometriosis causing inflammation and scarring, and vulvodynia (chronic vulvar pain without known cause).
Low libido, the most common female sexual disorder, can stem from stress, relationship issues, depression, anxiety, body image concerns, hormonal changes, medications, pain, or illness. Arousal problems (mental excitement and physical responses like lubrication) share similar causes plus medical conditions like thyroid disease, diabetes, MS, COVID-19, cancer, and menopause.
No single pill effectively treats all sexual disorders due to the complexity of female sexual response. Treatment often requires a multidisciplinary team and may combine sex therapy, improved partner communication, pelvic physical therapy, and sometimes medication or devices like vibrators. Licensed sex therapists with specialized sexual health training help individuals and couples through practical guidance, communication facilitation, cognitive behavioral therapy addressing fears and expectations, and mindfulness training.
Pelvic floor PT effectively treats pain during sex by addressing conditions like vaginismus, vulvodynia, menopausal changes, and scar tissue. Therapists release tight muscles and scar tissue, improve nerve pain, and teach patients to use vaginal dilators when needed. Vibrators and vacuum suction devices can enhance clitoral stimulation and genital blood flow. Lubricants are first-line treatments for vaginal dryness, with different types (water-based, silicone-based, oil-based) offering various benefits and drawbacks.
While estrogen and testosterone influence female sexual response, hormone treatments generally don't help premenopausal women and show mixed results for postmenopausal women. Vaginal estrogen effectively treats dryness and pain with minimal systemic absorption. Some antidepressants lower libido while others improve it. Flibanserin (Addyi) and bremelanotide (Vyleesi) are FDA-approved treatments for female sexual interest/arousal disorder but have limitations due to side effects and administration requirements.
Chapter 10
Perimenopause and Menopause: Beyond Hot Flashes
For those suffering from painful menstrual conditions, menopause might seem like salvation. However, while it ends menstruation and often relieves conditions like endometriosis, it introduces new challenges: hot flashes, night sweats, mood swings, pelvic floor dysfunction, and sexual problems. Though women historically were expected to suffer through menopause, today's multibillion-dollar industry offers treatments ranging from hormonal medications to unregulated supplements.
Menopause officially occurs after twelve consecutive months without a period due to natural ovarian decline. The transition phase before menopause, called perimenopause, begins years earlier as the ovarian follicle pool depletes and estrogen drops. During this time, ovulation becomes irregular and eventually stops. Symptoms like hot flashes often begin during perimenopause, though some people experience no symptoms at all.
Hot flashes-sensations of heat occurring as frequently as hourly-are the most recognized menopausal symptom. These vasomotor symptoms often include sweating, chills, flushing, and palpitations. Their severity ranges from mild to debilitating enough to interfere with work and daily activities. Mood fluctuations are common during menopause, including irritability, tearfulness, depression, and anxiety. Sleep patterns often change, with difficulties falling or staying asleep. Many experience "brain fog"-problems with focus and memory.
Declining estrogen and testosterone can reduce libido and arousal and impair orgasm. Sexual problems may also stem from genitourinary syndrome of menopause, including insufficient vaginal lubrication, reduced vulvar blood flow, and pain during intercourse due to vaginal narrowing or tissue fragility. GSM involves pelvic floor weakening, pelvic organ prolapse, and changes to urethral and vaginal tissues, leading to urinary frequency, urgency, UTIs, vaginal dryness, burning, and discharge.
Menopause and low estrogen increase risks of serious conditions like cardiovascular disease and stroke. Declining estrogen raises LDL cholesterol levels, making regular health screenings crucial for postmenopausal individuals. Low estrogen also accelerates bone loss, leading to osteoporosis and higher fracture risk.
Estrogen-containing menopausal hormone therapy (MHT) most effectively treats vasomotor symptoms and GSM. MHT comes as oral pills, skin patches, and less commonly as topical gels or sprays. In contrast, vaginal estrogen treatments (creams, tablets, or rings) provide localized relief for GSM with minimal systemic absorption. For those with a uterus, estrogen must always be combined with progesterone to prevent uterine cancer risk.
While estrogen-containing medications most effectively treat menopausal symptoms, nonhormonal options exist for those who cannot take hormones. Antidepressants like SSRIs and SNRIs are the most effective alternatives to estrogen. Anti-seizure medications like gabapentin and pregabalin can help prevent vasomotor symptoms. In 2023, the FDA approved fezolinetant (Veozah) for moderate to severe menopausal vasomotor symptoms.
Complementary and alternative therapies are commonly used when people seek alternatives to medications or prefer natural approaches. Phytoestrogens (plant compounds similar to estrogen) from soy products, flaxseed, legumes, and some produce can be consumed through diet or supplements. Herbal remedies like black cohosh are also used for vasomotor symptoms, though research shows mixed results.
Chapter 11
The Path Forward: Reclaiming Women's Health
Gynecologic conditions share a common thread: a profound lack of information and research. While 80% of Black women develop fibroids with devastating symptoms, the root cause remains unknown, preventing effective treatment. Common conditions like diabetes receive continuous research and funding, yet gynecologic issues affecting virtually all women-endometriosis, fibroids, PCOS, PMDD, miscarriage, menopause-see virtually no breakthroughs or new treatments despite causing debilitating physical and emotional distress.
This neglect stems from layers of misogyny, racism, and dismissive assumptions about women's bodies. Female health problems are often expected to be tolerated rather than treated as legitimate medical diseases. The more symptoms a patient reports, the more likely they'll be dismissed as "hysterical" despite normal tests, perpetuating cycles of suffering.
In medicine, there are rarely definitive right or wrong treatment choices-only what works best for each individual. While cancer treatments follow specific algorithms based on test results, general gynecologic problems don't have fixed treatment pathways. People with identical symptoms may have different healthcare goals and choose entirely different treatment plans.
When choosing treatments, consider your primary goals, which might include eliminating pain or abnormal bleeding, resuming normal activities like exercise and sex, relieving gender dysphoria, or preserving fertility for future pregnancy. Consider your relationship with medications, surgical preferences, broader medical context, fertility goals, and practical factors like ease of use, cost, and insurance coverage.
It's time to break the cycle of misinformation and stigma. Women and people assigned female at birth deserve to understand their bodies, advocate for proper care, and seek second opinions when necessary. By speaking openly about these taboo topics, joining support groups, lobbying for research funding, and committing to advocacy, we can leave the concept of "hysteria" in the past where it belongs.
