Expert

Tips for Successfully Navigating Endometriosis

Georgie Kovacs

Ten years ago I was diagnosed with unexplained fertility — but my situation was far from "unexplained." Instead, I learned of a condition that impacts many women, and became fascinated by the challenges women and doctors face not only with endometriosis but also women’s health as a whole.

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Mar 19, 2021

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Here you will learn my story, the foundations of endometriosis, and tools to support you in your journey.

My story How common is endometriosis? Diagnosing How to manage

My Story

In October 2010, I had just returned from my honeymoon and happened to have a routine OB GYN appointment. Perhaps because I spoke about my fabulous honeymoon involving a trip to Greece, she asked me a lot of questions, including whether I was trying to conceive, and she drew several vials of blood. The next day, I was told I needed to see a fertility doctor.

Yes, this sounds fast — and it was.

The next four years felt like spinning on a hamster wheel navigating the space of infertility. I was quickly told my condition was unexplained and that my 35 year old body was like that of a 45 year old.

Over the years, protocols changed, yet the results unchanged: unexplained infertility, not pregnant. Having spent my entire career in healthcare, I knew there was an answer. Either my doctors were not trying hard enough, or science has not caught up to truly understanding the intricacies of my body.

About three years in and at my tenth doctor along the journey, I was told, “I think you have endometriosis, but it's silent, meaning you don't have symptoms. The only way to diagnose it is to get surgery.”

I evaluated the previous three years — thousands of dollars that resulted in zero results. I weighed the options: pay a fraction of the cost of an IVF cycle to potentially get a diagnosis and finally have answers, or pay a lot of money for another IVF and get the same result: not pregnant.

I chose the surgery, and it confirmed I had late stage endometriosis. I was able to get pregnant after the surgery with an immune protocol IVF cycle, and now have a son, but the journey and my experience in healthcare made me incredibly curious about why this took so long to sort out.

How common is endometriosis?

Before speaking to managing endometriosis, it is important to put some important points into context.

Endometriosis impacts at least 1 in 10 women. I say at least because researchers focused on this disease project that many more women have it. The only way to diagnose endometriosis with certainty is via a laparoscopic surgery. With women justifiably not lining up for exploratory surgery, insurance companies not covering a surgery “just because,” and doctors not having capacity to conduct such a procedure on every woman, you can see why it is quite plausible the numbers are underestimated.

How long does endometriosis take to diagnose?

Depending on which research paper you read, endometriosis takes seven to eleven years to diagnose. Why is this the case? The answer is multifactorial.

A complex, not-yet-understood condition

Researchers still don’t understand the cause of endometriosis. Without understanding the cause, one can imagine how difficult it is to find the optimal treatment.

Limited funding for research

The CEO of Celmatix presented at the tenth annual Endometriosis Foundation of America conference the following figures on funding. When comparing the cost disease burden relative to NIH funding, for diabetes, it was ~350:1 and for endometriosis, it was ~3000:1. What this means is research funding for endometriosis is a drop in the bucket relative to its significant economic impact.

Few experts

I interviewed world renowned endometriosis surgeon, Dr. Tamer Seckin, who shared that there are only about 100-200 surgeons in the world who truly understand endometriosis. Experts validates this at a recent endometriosis conference.

OB GYNs attending the 2019 Endometriosis Summit shared how little training they receive on endometriosis.

Complex surgery

Given the complexity in diagnosis and treatment, an expert team of surgeons should be on the ready.

Endometriosis can grow around several organs, including your bowels, and OB GYNs are not trained experts on procedures outside of your reproductive organs.

Given it is only during laparoscopy that a surgeon fully grasps where the endometriosis is, in an ideal world, the sub-specialists need to be on standby.

Add to that, imagine you are in a small town — how do you access so many experts in one hospital?

>>RELATED: Listen to my interview with patient advocate Melissa Boudreau, who was in this situation and how she navigated it.)

How to manage endometriosis

First, there is not a clear cut answer, and if one is promised to you, that is a sign to seek another opinion.

In the community, I have seen patients range from hardly any symptoms to being crippled by pain regardless of what has been tried and then anything in between.

Based on what I’ve seen in the community and through experts I have interviewed, here are key tips to navigate endometriosis.

Take good notes on you

Don’t underestimate your expertise. Endometriosis experts agree the women dealing with this day-to-day are the experts. You are the one suffering, reaching out to your community, trying anything and everything to feel better. Track it. Share it with your doctor.

Prepare for your doctor appointments

It's not only important to notate key themes you see as you track your body and health, but to prepare for questions to ask. If you are about to or just have undergone laparoscopic surgery, as an example, this is an incredible post with a comprehensive list of questions you should ask categorized by where you are in your journey.

Optimize your diet

I have seen incredible variation on the right diet for endometriosis patients. The most common are to eliminate gluten and dairy. Outside of that, I see contradictions around soy and red meat, as examples. The key seems to be to avoid high estrogenic foods. Thus, consult an expert, ideally a nutritionist who specializes in endometriosis.

>>MORE: Food and Fertility: What's the Link?

Take the right supplements

Supplements are complex to navigate. My interview with Suzanne Munson sheds light on how to pick the right supplements for you. Additionally, Dr Lara Briden shared on our recent episode and in her recent blog post about her success in using iodine for endometriosis patients.

Take note of her warnings about dosage. Please consult a professional before creating your own supplement cocktail, especially when it comes to iodine.

>>MORE: What Supplements Should I Take When Trying to Conceive?

Try castor oil packs

Nicole Kruck speaks about the benefits of castor oil packs. Many endometriosis patients have found them to help with pain.

Find a community

Each of us needs something different to support us in our health journey. However, you can’t underestimate the power of community. Whether you observe from afar or share and comment, find a support network. It will help you feel less alone, and you might learn a few tips that would apply to your situation.

Pause before you act on something you learn on social media

Yes, when something works, we want to scream from the rooftop and help our fellow women. However, our medical histories don’t come with our social media posts, which means you don’t have full context for why something worked. Take it as a tip to consider, talk to your doctor, and then decide if it is best for you.

Take it one day at a time

Your journey will vary by minute, hour, day, and year. On those hard days you may skip tracking or want to cheat on your diet or want to crawl under the covers. It is okay. When feeling overwhelmed, focus on today or this specific moment and find support.

Managing endometriosis: hope for the future

I’ve interviewed and spoken with an incredible amount of companies and experts. I’m heartened by the incredible efforts being made to transform women’s health, including endometriosis.

Resources

Fempower Health page dedicated to endometriosis
Interview with Dr Seckin | Endometriosis: Why Women are Dismissed and What They Should Do
Interview with Melissa Boudreau | Endometriosis: Lessons from a Patient and Advocate
Phendo app developed by Columbia University and designed to track symptoms, manage endometriosis, and aid in their research efforts
Questions to ask your doctor about laparoscopic surgery
Nancy’s Nook, a community for those who have endometriosis
Endometriosis conferences Endometriosis Foundation of America and Endometriosis Summit
ReceptivaDx, a diagnostic tool targeted for those with unexplained infertility and recurrent pregnancy loss, which may indicate endometriosis

About the author

Georgie Kovacs is the founder of Fempower Health, the go-to resource for all things women health serving women, their providers, and companies looking to build/improve on products for women.

Sources

https://www.oova.life/blog/fertility-vitamins

How long does it take for fertility vitamins to work?

Because egg development takes about 90 days, you may see benefits after 3 months of consistent supplementation. However, some benefits (like improved energy from iron) may appear sooner.

https://www.oova.life/blog/fertility-vitamins

Are prenatal vitamins the same as fertility vitamins?

They're similar but not identical. Prenatal vitamins are designed for pregnancy needs, while fertility vitamins may contain different ratios or additional nutrients like CoQ10 or inositol specifically for supporting conception.

https://www.oova.life/blog/fertility-vitamins

Do men need fertility vitamins too?

Absolutely. Male fertility accounts for about 40-50% of infertility cases. Men benefit from vitamins C and E, zinc, selenium, folate, and CoQ10 to improve sperm quality, count, and motility.

https://www.oova.life/blog/fertility-vitamins

Yes, excessive amounts of certain vitamins and minerals can be harmful. Fat-soluble vitamins (A, D, E, K) and minerals like iron can accumulate to toxic levels. Always follow recommended dosages and consult your healthcare provider.

Can I take too many fertility vitamins?

https://www.oova.life/blog/fertility-vitamins

When should I start taking fertility vitamins?

Begin taking fertility vitamins at least 3 months before trying to conceive, ideally 6-12 months. This gives your body time to build adequate nutrient stores for conception and early pregnancy.

https://www.oova.life/blog/fertility-vitamins

Which vitamin is most important for fertility?

Folate (folic acid) is considered most critical because it prevents neural tube defects and supports healthy egg development. However, fertility depends on multiple nutrients working together, so a comprehensive approach is best.

https://www.oova.life/blog/signs-of-ovulation-while-breastfeeding

Should I take a pregnancy test if I think I'm ovulating while breastfeeding?

If you've had unprotected intercourse and notice signs of ovulation, taking a pregnancy test is reasonable, especially if your period doesn't arrive when expected. Home pregnancy tests are accurate from the first day of a missed period.

https://www.oova.life/blog/signs-of-ovulation-while-breastfeeding

Will ovulation affect my milk supply?

Some women notice temporary milk supply dips around ovulation or during their period due to hormonal fluctuations. This is usually brief and doesn't require weaning. Continued nursing typically restores supply.

https://www.oova.life/blog/signs-of-ovulation-while-breastfeeding

Does pumping breast milk suppress ovulation like nursing does?

Pumping is less effective at suppressing ovulation than direct breastfeeding. The physical stimulation of nursing more effectively triggers prolactin release. If you're pumping exclusively or frequently, ovulation may return sooner.

https://www.oova.life/blog/signs-of-ovulation-while-breastfeeding

How effective is breastfeeding as birth control?

When all LAM criteria are met (exclusive breastfeeding, no period, less than 6 months postpartum), it's about 98% effective comparable to hormonal birth control. However, effectiveness drops significantly when any criterion is not met.

https://www.oova.life/blog/signs-of-ovulation-while-breastfeeding

Can you get pregnant while breastfeeding before your first period?

Yes, you can ovulate and therefore get pregnant before your first postpartum period returns. Ovulation occurs before menstruation in the cycle sequence, so your first fertile window happens before you realize your period is coming back.

https://www.oova.life/blog/signs-ovulation-is-over

Do you always have symptoms when ovulation ends?

Not everyone experiences noticeable symptoms. Some people have very subtle signs while others have pronounced changes. This is why hormone tracking provides more objective confirmation than symptoms alone.

https://www.oova.life/blog/signs-ovulation-is-over

What's the difference between ovulation and the fertile window?

Ovulation is the specific moment when the egg is released and lasts 12-48 hours. The fertile window is approximately 6 days, the 5 days before ovulation plus ovulation day, because sperm can survive several days while waiting for the egg.

https://www.oova.life/blog/signs-ovulation-is-over

How accurate is basal body temperature for confirming ovulation?

BBT is fairly reliable when tracked consistently, but it confirms ovulation retrospectively (1-2 days after it occurs) rather than predicting it. It's most useful when combined with other tracking methods.

https://www.oova.life/blog/signs-ovulation-is-over

Can you ovulate twice in one cycle?

While rare, it's possible to release two eggs during one ovulation event (within 24 hours), which can result in fraternal twins. However, you don't ovulate twice at different times in a single cycle.

https://www.oova.life/blog/signs-ovulation-is-over

How many days after ovulation can you get pregnant?

The egg is only viable for 12-24 hours after ovulation. However, since sperm can survive up to 5 days, your fertile window includes the 5 days before ovulation and the day of ovulation itself.

https://www.oova.life/blog/why-is-my-period-late-but-my-pregnancy-test-is-negative

Can stress really delay your period?

Absolutely. Stress affects the hypothalamus, which regulates hormones controlling your menstrual cycle. Significant stress can delay ovulation and therefore your period.

https://www.oova.life/blog/why-is-my-period-late-but-my-pregnancy-test-is-negative

What should I do if my period is 2 weeks late but the test is negative?

Take another test. If it's still negative and your period doesn't arrive, schedule an appointment with your healthcare provider to investigate potential causes.

https://www.oova.life/blog/why-is-my-period-late-but-my-pregnancy-test-is-negative

Can you be pregnant with a negative test?

Yes, especially if you test too early. Wait until at least a few days after your missed period and retest. HCG levels need time to rise to detectable levels.

https://www.oova.life/blog/why-is-my-period-late-but-my-pregnancy-test-is-negative

How long can your period be late without being pregnant?

Periods can be late for various reasons unrelated to pregnancy. If you're not pregnant, a period can be delayed by several days to weeks due to stress, illness, or hormonal changes. However, if your period is more than a week late and tests remain negative, consult your doctor.

https://www.oova.life/blog/hormonal-imbalance-symptoms

Will hormonal imbalance symptoms go away on their own?

Some temporary imbalances resolve naturally, especially those related to life transitions, but persistent symptoms typically require intervention to improve.

https://www.oova.life/blog/hormonal-imbalance-symptoms

Are hormonal imbalances more common in women?

While women experience certain hormonal imbalances more frequently (like PCOS and thyroid disorders), men also experience hormonal issues, particularly with testosterone and thyroid hormones.

https://www.oova.life/blog/hormonal-imbalance-symptoms

Can stress alone cause hormonal imbalances?

Yes, chronic stress significantly impacts cortisol, which can then disrupt other hormones including thyroid hormones and sex hormones.

https://www.oova.life/blog/hormonal-imbalance-symptoms

How quickly can hormonal imbalance symptoms appear?

Some symptoms develop gradually over months, while others can appear within weeks depending on the hormone affected and severity of the imbalance.

perimenopause-periods

Should I still see my gynecologist if my periods are just "weird" but not painful?

Yes. Annual visits remain important during perimenopause. Your provider can help determine if your "weird" periods are typical perimenopause changes or something requiring attention. They can also discuss management options to improve your quality of life.

perimenopause-periods

How long do irregular periods last before menopause?

Irregular perimenopause periods typically last 4 to 8 years before your final period, though this varies greatly. Some women experience irregularity for just a few months, while others have irregular periods for over a decade before reaching menopause.

perimenopause-periods

Is it normal to have two periods in one month during perimenopause?

Yes, this can happen, especially in early perimenopause when cycles shorten. You might have a 21 day cycle, meaning you could have a period at the beginning and end of the same calendar month. Track these patterns to distinguish between short cycles and abnormal bleeding.

perimenopause-periods

Why are my periods suddenly so heavy in my 40s?

Heavy perimenopause periods often result from estrogen dominance. When progesterone drops but estrogen remains high, your uterine lining builds up more than usual, causing heavier bleeding when it sheds. This is common in perimenopause but should be evaluated if it affects your daily life.

perimenopause-periods

Can I still get pregnant if my periods are irregular during perimenopause?

Yes. As long as you're having periods, even irregular ones, you may still be ovulating. Pregnancy is possible until you've gone 12 full months without any period. If you don't want to become pregnant, continue using contraception throughout perimenopause.

perimenopause-and-weight-gain

Can you prevent perimenopause weight gain completely?

While you may not prevent all weight changes during perimenopause, you can minimize gain through proactive strategies. Starting strength training before perimenopause, maintaining consistent sleep habits, and managing stress can help your body adapt to hormonal changes more smoothly. Remember, some body changes during this transition are normal and healthy.

perimenopause-and-weight-gain

At what age does perimenopause weight gain typically start?

Perimenopause weight gain can begin in your late 30s or early 40s, often coinciding with the first hormonal changes. Many women notice gradual changes starting 5 to 10 years before their final period. The timing varies greatly based on genetics, lifestyle, and overall health.

perimenopause-and-weight-gain

Does everyone gain the same amount during perimenopause?

No. Perimenopause weight gain varies significantly. Some women gain 5 pounds, others 20 or more, and some maintain their weight. Factors include genetics, starting weight, activity level, stress, sleep quality, and how dramatically hormones fluctuate. Your experience is unique to your body.

Is perimenopause weight gain different from regular aging weight gain?

Yes. While metabolism naturally slows with age, perimenopause weight gain has distinct characteristics. The hormonal shifts cause fat redistribution to the midsection, even if overall weight doesn't change dramatically. This abdominal weight gain pattern is specifically linked to declining estrogen and progesterone, not just aging.

perimenopause-and-weight-gain

Will the weight come off after menopause?

Perimenopause weight gain often stabilizes after menopause when hormones level out, but the weight doesn't automatically disappear. The metabolic and body composition changes that occur during perimenopause tend to persist. However, with consistent healthy habits, weight management becomes more predictable post menopause than during the fluctuating perimenopause years.

https://www.oova.life/blog/progesterone-supplementation-guide

Can I take progesterone if I'm breastfeeding?

Yes, progesterone is generally safe while breastfeeding and doesn't significantly affect milk supply. However, always discuss with your healthcare provider before starting any hormone supplementation while nursing.

https://www.oova.life/blog/progesterone-supplementation-guide

Is it safe to take progesterone throughout pregnancy?

Yes, when prescribed by your healthcare provider. Progesterone supplementation in early pregnancy is safe and can reduce miscarriage risk in women with low progesterone or a history of pregnancy loss. Most providers continue supplementation through the first trimester (weeks 10-12) when the placenta takes over.

https://www.oova.life/blog/progesterone-supplementation-guide

Can progesterone supplementation cause weight gain?

Progesterone can cause temporary water retention and bloating, which may show up as a few pounds on the scale, but it doesn't cause true fat weight gain. Most women don't experience significant weight changes from progesterone supplementation.

https://www.oova.life/blog/progesterone-supplementation-guide

Can I switch from pills to suppositories or vice versa?

Yes, but only under your doctor's guidance. The dosing and timing may need adjustment when switching between forms since they're absorbed differently. Never switch on your own, especially if you're pregnant or undergoing fertility treatment.

https://www.oova.life/blog/progesterone-supplementation-guide

Will progesterone supplementation delay my period?

Yes, progesterone keeps the uterine lining intact, so if you're not pregnant and continue taking progesterone, your period will be delayed. Once you stop taking it, your period should start within 2-10 days. If you are pregnant, progesterone helps maintain the pregnancy and you won't get a period.

https://www.oova.life/blog/progesterone-supplementation-guide

Should I take progesterone pills orally or vaginally?

For fertility and pregnancy support, vaginal progesterone is usually preferred because it delivers higher concentrations directly to the uterus. For perimenopause or general hormone balance, oral progesterone often works well and is more convenient. Your doctor will recommend the best route based on your specific needs.

https://www.oova.life/blog/progesterone-supplementation-guide

When should I start taking progesterone after ovulation?

Typically, progesterone supplementation for luteal phase support starts 2-3 days after ovulation (confirmed by LH surge or temperature rise). Your doctor will give you specific timing based on your protocol. Some women start immediately after a positive ovulation test.

https://www.oova.life/blog/progesterone-supplementation-guide

What's better: progesterone cream or pills?

Pills (oral micronized progesterone) are generally more effective and reliable than creams because absorption from creams is inconsistent. For medical conditions like fertility issues, low progesterone, or HRT, prescription pills or suppositories are strongly recommended over over-the-counter creams.

https://www.oova.life/blog/low-vs-high-progesterone-symptoms

How can I tell if I have low or high progesterone?

The only definitive way to know is through hormone testing via blood tests or at-home urine tests that measure progesterone metabolites. However, symptom patterns can provide clues: anxiety and irregular periods suggest low progesterone, while bloating and extreme fatigue suggest high progesterone.

https://www.oova.life/blog/low-vs-high-progesterone-symptoms

When during my cycle should I test progesterone levels?

Test progesterone levels during the luteal phase, typically 7 days after ovulation or around day 21 of a 28-day cycle. This is when progesterone should be at its peak, making it easier to identify if levels are too low or too high.

https://www.oova.life/blog/low-vs-high-progesterone-symptoms

What are the main differences between low and high progesterone symptoms?

Low progesterone typically causes irregular or heavy periods, anxiety, hot flashes, and sleep issues. High progesterone causes bloating, fatigue, intense breast tenderness, and depression-like mood changes. Low progesterone symptoms persist throughout your cycle, while high progesterone symptoms are most intense during the luteal phase.

https://www.oova.life/blog/low-vs-high-progesterone-symptoms

Can you have symptoms of both low and high progesterone?

Some symptoms like breast tenderness and mood changes can occur with both low and high progesterone, making it confusing. However, the timing, intensity, and accompanying symptoms differ. Hormone testing is the best way to determine which imbalance you're experiencing.