Author’s Note:

Hi! I’m Dani, a marketer at TINA who was diagnosed with endometriosis after 17 years of debilitating pelvic pain. Since then, I’ve spent hundreds of hours researching the disease and advocating for myself. One of the trickiest things about endometriosis is that a lot of the information you can find online is out of date or blatantly wrong.

I’ve put together this guide as a way to share what I’ve learned. I’ve included research-backed references and a big list of resources that I wish I had back when I was desperately searching for a diagnosis. I really hope you find this guide helpful!

What is Endometriosis?

Endometriosis is a systemic, inflammatory disease that impacts 1 in 10 women of reproductive age.¹ It is characterized by the presence of tissue similar to the lining of the uterus (endometrium) found in locations outside of the uterus.¹ In fact, endometriosis has been found in every major organ in the body² including the brain!³

There are four different stages of the disease, but the level of pain is not actually correlated with the stage.¹⁰ Someone with stage 1 endometriosis may have debilitating pain, and someone with stage 4 deep infiltrating endometriosis might not have any symptoms.

Okay, but what does all that jargon actually mean?

When I was initially diagnosed, I found it really difficult to visualize what endometriosis actually looks like. It’s easiest for me to think of it as three distinct things: lesions, adhesions, and endometriomas.

• Lesions: A lesion is abnormal tissue that implants itself into areas outside of the uterus. Most of the time, these lesions are found in the pelvic cavity, but they can also be found on other organs outside of the pelvis.⁴ The lesions can either be superficial, so just on the surface, which I think of as kind of like a freckle or a mole, or they can be deep infiltrating, which I think of as an iceberg - you can see a little bit on the top, but they go much deeper than the eye can see.
• Adhesions: An adhesion is a band of scar tissue that forms between organs.⁵ I imagine pulling gum off the bottom of my shoe as an adhesion. One important thing to keep in mind about adhesions is that they can either be formed by endometriosis itself, or as a result of surgery.⁶ Some people have a tendency to form more adhesions than others after surgeries. After my first and second laparoscopies, I had a lot of adhesions, which means I’m probably more likely to develop them than others.
• Endometrioma: An endometrioma is a cyst caused by endometriosis that develops, most commonly, on the ovary. The cyst is filled with a dark fluid so they are also known as chocolate cysts.⁷ You can think of a cyst kind of like a gusher - a sac on the outside, liquid on the inside. Endometriomas indicate that you have a more severe stage of endometriosis.⁷

This video does a great job of showing what endometriosis lesions can look like on different organs. The lesions can be many different colors⁸ which makes it particularly difficult for an untrained doctor to identify them.

What does endometriosis feel like?

I’ve personally experienced almost all of the most common symptoms of endometriosis. These include: chronic pelvic pain, lower back pain, pain with periods and sex, mid-back pain, chronic constipation, urinary frequency/urgency, bloating, migraines, shooting leg pain, and chronic fatigue.

Some people only experience symptoms during their periods, or find that their symptoms get worse during their periods. For me, my period causes my symptoms to flare, but I also have flares other times in the month. Fun!

Severe period pain is NOT normal. If you find yourself cancelling plans around your period, throwing up from pain, curled up in the fetal position, or attached to a heating pad, that’s a good indicator that you should be evaluated by an endometriosis expert.

What causes endometriosis?

Frustratingly, we don’t actually know what causes endometriosis. There are many different theories that involve epigenetic, environmental, congenital, autoimmune, and allergic factors.

Retrograde menstruation, when menstrual blood flows in the opposite direction (from the uterus, through the fallopian tubes, into the pelvic cavity) was originally thought to be the cause of endometriosis, but has since been debunked as the cause because research has found that women without endometriosis also have retrograde menstruation.⁹

How is endometriosis diagnosed?

You might have heard that it takes, on average, 7-10 years to get an endometriosis diagnosis.¹¹

That is, in part, because the only way to definitively diagnose endometriosis is through a biopsy collected during a laparoscopy (an abdominal surgery). A laparoscopy is invasive, requires time off work, and can be very expensive, so doctors often try to prescribe medication to improve your symptoms instead of doing a surgery to identify the root cause.

For me personally, it took about 5 years of actively trying to address my chronic pelvic pain before a laparoscopy was recommended. I received 7 rounds of botox in my pelvic floor (under anesthesia!), tried countless meds and creams, spent hundreds of hours in pelvic floor physical therapy, saw a pain psychologist, and even had a surgery called a vestibulectomy. Endometriosis was not mentioned until years later when my new PCP referred me to an endometriosis specialist.

While laparoscopy is the only definitive way to get a diagnosis, highly specialized endometriosis specialists often can visualize endometriosis through ultrasounds. MRIs can usually see endometriomas, but they generally miss early stage or superficial disease.1 My endometriosis did not show up on an MRI. When my second endometriosis surgeon did the ultrasound herself, she was able to see my adhesions and accurately predict that I still had endometriosis left behind after my first laparoscopy.

While imaging (MRI or ultrasound) can confirm endometriosis, it’s NOT possible to rule out endometriosis from imaging.¹ If you are told you don’t have endometriosis after an ultrasound or an MRI, you should consider getting a second opinion.

How is endometriosis treated?

There is no cure for endometriosis, but the gold standard of treatment is to remove it through an excision surgery. This is typically done by inserting a camera into the abdomen and then excising (cutting out) the lesions, adhesions, and endometriomas. Anything other than surgery is only going to treat the symptoms that you feel because of your endometriosis.¹² It’s the same as treating a cold with cold medicine - it doesn’t actually treat the cold, but it can make you feel better.

Some surgeons treat endometriosis by using a surgical technique called ablation which involves burning off the lesion instead of cutting it out with excision. Ablation only burns off the very surface layer so if we think back to the iceberg reference above - just burning off the top the lesion is not going to effectively remove all of the disease.¹³ I’ve seen many stories of people who end up having a second surgery after an initial, and incomplete, ablation.

Before we go any further, let me specifically call out that a hysterectomy is NOT a cure for endometriosis.¹⁴ This is a very common misconception and I’ve read so many stories of women who had hysterectomies only to continue to be in pain. Since endometriosis grows outside of the uterus, removing the uterus is not going to remove the disease. Hysterectomy is a cure for endometriosis’s sister disease, adenomyosis.¹⁵

Hormonal birth control1 and pelvic floor physical therapy16 are some of the most common treatments for endometriosis symptoms. There are other medicines, such as GnRH receptors, but these can have very severe side effects so it’s important to weigh the pros and cons before considering any medication for endometriosis.¹

I helped TINA create our suite of period pain products that are designed to treat endometriosis symptoms, NOT endometriosis itself. These are research-backed treatments that are designed to make your pain less miserable, including: our adorable Cuterus plushie heating pad (my body responds super well to heat), comfy cream, and soothing stickies.

How do I find an endometriosis expert?

It’s incredibly important to find a surgeon who specifically specializes in endometriosis excision to ensure that you get the right care and diagnosis. This means that your standard OB/GYN is NOT the right person to evaluate you for endometriosis. They should be referring you to an endometriosis specialist.

I find this graphic really helpful for understanding the different levels of endometriosis expertise a surgeon can have. Here’s a list of questions you can ask your surgeon to find out more about their approach to endometriosis and their experience. Remember that you need to make sure your surgeon is performing excision, not ablation.

Unfortunately, many of the best endometriosis surgeons have private practices and don’t take insurance. This is, in large part, due to the way insurance reimburses for laparoscopies. In many cases, insurance will reimburse the surgeon the same amount for a 10-minute exploratory laparoscopy as a 2-hour excision with an expert. My surgeon, Dr. Cindy Mosbrucker, has a good explainer on her website about this.

What about fertility? Will endometriosis impact my infertility?

It might. Endometriosis is a leading cause of infertility, and 30-50% of people with endometriosis also experience infertility.¹⁷ In many cases, excision surgery with an excision expert can increase your chances of getting pregnant.¹⁸

It’s really important to discuss your fertility with your endometriosis surgeon. This allows them to know whether they should be prioritizing preserving your fertility during your excision. This was the case for me during my second excision. You might also want to set up an appointment with a reproductive endocrinologist (a fertility doctor) to learn more about your options.

How can I learn more about endometriosis?

The most important thing I’ve done in my endometriosis journey is educate myself about the disease so that I can be the best possible advocate for myself. Here are some of the resources that I’ve found most helpful for learning about endometriosis.

Documentaries:

Below the Belt - I highly recommend watching this documentary! Scroll to the very bottom of the page and you can get a digital screening of the documentary for $20. The money raised from the documentary goes towards endo advocacy efforts.

EndoWhat

Facebook Group:

Nancy’s Nook Endometriosis Education - this is not your average Facebook group. It is run by a nurse who performed endometriosis surgery with one of the leading endo surgeons for many years. There’s no discussion allowed and all posts are highly moderated. The comments are turned off as soon as the question has been answered. It can be overwhelming to navigate but using the search bar is the best way to learn.

Support Group:

The Endo Co Support Group

Conference/Webinars:

The Endometriosis Summit

Instagram Accounts:

Endometriosis Summit (conference)

Dr. Vidali (surgeon)

Dr. Arrington (surgeon)

Dr. McHale (surgeon)

Dr. Liu (surgeon)

Surgery Videos: (these are very graphic - not for the faint of heart!)

Center for Endometriosis Care

Dr. Vidali’s YouTube Playlist

Podcasts:

In Sixteen Years of Endometriosis Podcast

Endo Battery Podcast

Fertility Friday Podcast: Surgical Treatment & Diagnosis for Endometriosis | Dr. Ken Sinervo

References

• Zondervan K.T., Becker C.M., Missmer S.A. Endometriosis. N. Engl. J. Med. 2020 [cited 2025 Feb 24] Accessed from: NEJM
• Anand M, Deshmukh SD. Massive abdominal wall endometriosis masquerading as desmoid tumour. J Cutan Aesthet Surg. 2011. [cited 2025 Feb 24] Accessed from: PMC
• Elefante C, Brancati GE, Oragvelidze E, Lattanzi L, Maremmani I, Perugi G. Psychiatric Symptoms in Patients with Cerebral Endometriosis: A Case Report and Literature Review. J Clin Med. 2022. [cited 2025 Feb 24] Accessed from: PMC
• MedlinePlus [Internet]. Bethesda (MD): National Library of Medicine (US); Endometriosis. [cited 2025 Feb 24] Accessed from: MedlinePlus
• MedlinePlus [Internet]. Bethesda (MD): National Library of Medicine (US); Adhesion. [reviewed 2024 Mar 31]. [cited 2025 Feb 24] Accessed from: MedlinePlus
• Krämer B, Andress J, Neis F, Hoffmann S, Brucker S, Kommoss S, Höller A. Adhesion prevention after endometriosis surgery - results of a randomized, controlled clinical trial with second-look laparoscopy. Langenbecks Arch Surg. 2021 [cited 2025 Feb 24] Accessed from: PMC
• Hoyle AT, Puckett Y. Endometrioma. [Updated 2023 Jun 5]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing. [cited 2025 Feb 24] Accessed from: StatPearls
• Imperiale L, Nisolle M, Noël JC, Fastrez M. Three Types of Endometriosis: Pathogenesis, Diagnosis and Treatment. State of the Art. J Clin Med. 2023. [cited 2025 Feb 24] Accessed from: PMC
• Smolarz B, Szyłło K, Romanowicz H. Endometriosis: Epidemiology, Classification, Pathogenesis, Treatment and Genetics (Review of Literature). Int J Mol Sci. 2021. [cited 2025 Feb 24] Accessed from: PMC
• Lee SY, Koo YJ, Lee DH. Classification of endometriosis. Yeungnam Univ J Med. 2021. [cited 2025 Feb 24] Accessed from: PMC
• Johnston JL, Reid H, Hunter D. Diagnosing endometriosis in primary care: clinical update. Br J Gen Pract. 2015. [cited 2025 Feb 24] Accessed from: PMC
• Allaire C, Bedaiwy MA, Yong PJ. Diagnosis and management of endometriosis. CMAJ. 2023. [cited 2025 Feb 24] Accessed from: PMC
• Pundir J, Omanwa K, Kovoor E, Pundir V, Lancaster G, Barton-Smith P. Laparoscopic Excision Versus Ablation for Endometriosis-associated Pain: An Updated Systematic Review and Meta-analysis. J Minim Invasive Gynecol. 2017. [cited 2025 Feb 24] Accessed from: PubMed
• Rizk B, Fischer AS, Lotfy HA, Turki R, Zahed HA, Malik R, Holliday CP, Glass A, Fishel H, Soliman MY, Herrera D. Recurrence of endometriosis after hysterectomy. Facts Views Vis Obgyn. 2014. [cited 2025 Feb 24] Accessed from: PMC
• Gunther R, Walker C. Adenomyosis. [Updated 2023 Jun 12]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2025. [cited 2025 Feb 24] Accessed from: StatPearls
• Wallace SL, Miller LD, Mishra K. Pelvic floor physical therapy in the treatment of pelvic floor dysfunction in women. Curr Opin Obstet Gynecol. 2019. [cited 2025 Feb 24] Accessed from: Stanford