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Remember, this is educational information only and not medical advice (and I am not a doctor nor an expert on endometriosis). Always check with your qualified medical professional before making any changes to your treatment plan.

Endometriosis Treatment and Management Options

The treatment recommendations a person receives for endometriosis typically depends on the doctor’s skills, experience, and knowledge, so when looking for an endometriosis specialist, it’s important to understand endometriosis and know about the different treatments so you can make an informed decision on your care.

Hormonal Suppression

These are medications such as:

• GnRh drugs (Lupron, Orlissa, Zoladex, Synarel, Prostap, etc) that medically induce menopause
  
  
• combined hormonal contraceptives (this can be a pill, transdermal patches, or vaginal ring)
  
  
• progestins (Visanne/Dienogest, Depo Provera, the Mirena IUD, etc)

Hormonal suppression only manages the symptoms of endometriosis.

And only in some people – not everyone sees symptom relief on these medications. Additionally, any symptom relief is usually temporary and typically returns when the person stops the medication. Hormonal suppression may be a lifesaver for some people to help them with their symptoms.

But it’s important to understand the limitations of hormones and what they can’t do, because many doctors assume that hormonal suppression dries up endo or slows its growth, but there is no evidence to show this. So you may be taking hormones under the false impression that you are helping your disease, and sticking out intolerable side effects like changes to your libido or mental health, and putting yourself through negative side effects for no potential disease benefit. This is why informed consent is so important, so you can weigh potential risks vs benefits based on the facts.

If a doctor tells you that hormones treat endometriosis (in any way, such as slowing its growth, preventing recurrence, or shrinking endo), the question should be: Where is the proof of this? What studies show this?

“Although the scientific community is trying to find an algorithm of treatment for endometriosis that can be universally applied, to date, there is no ideal drug that can prevent, inhibit, or stop the development of endometriosis. Almost all of the currently available treatment options for endometriosis suppress ovarian function and are not curative.” (A.A. Gheorghisan-Galateanu et al.)

It’s super important to know that endometriosis can make its own estrogen via the aromatase enzyme, so even when a person goes into a low estrogen state due to hormonal medications, endometriosis can make its own estrogen via aromatase, which is independent of the hormone production of estrogen in the ovaries.

Hormonal suppression doesn’t remove endometriosis lesions.

However, due to misinformation, many gynecologists who are not experts in endometriosis use these various methods as ‘treatment’ for the disease itself. They often wrongly believe that endometriosis will be ‘cleaned up’, ‘dried up,’ or ‘removed’ using one of these treatments, but this is simply not true.

The “studies” on how Lupron or Zoladex shrink endometriosis are completely flawed. It does not shrink the lesions. I break down a Lupron study here, and Kate from EndoGirlsBlog breaks down Zoladex here.

Hormonal suppression and disease progression.

There are no studies to show that hormonal suppression slows or stops the progression of endo. However, there are studies which show that endometriosis can still progress while on hormonal suppression. Additionally, excision surgeons see people every day who have advanced, deep disease but have taken hormones for years: patients who have been on birth control and an IUD at same time, or 9 years of Lupron, or 2 IUDs at the same time, or 13 years on birth control having been placed on it within 1 month of their first period, etc.

The American College of Gynecologists and Obstetricians (ACOG) Practice Bulletin 114 Management of Endometriosis states: “There is no data to support use of medical treatment to prevent progression of the disease.” Additionally, in the 2022 ESHRE Endometriosis Guidelines, there is no mention in the section on hormone treatments for endometriosis- associated pain that hormones slow or stop the progression of endometriosis.

Even with hormonal suppression specific to endometriosis – like Orilissa or Visanne – these only indicate in the package insert that they are for the management of endo-associated pain, with no mention of slowing or stopping disease progression.

Hormonal suppression and disease recurrence.

There are some studies that have looked at whether hormonal suppression post surgery can prevent recurrence (mostly of endometriomas), but these have not found the same results. Additionally, many of these have flawed methodologies. More information on this on my Endometrioma page.

GnRh drugs

GnRh drugs can have serious, long-term side effects that continue even after stopping the medication. Make sure to research in depth to understand the risks/benefits before deciding to use them. Orilissa was only released in 2018 and we don’t have info yet on potential long term side effects like we do for Lupron. See the resources below.

The FDA only approved Lupron for 6 months without add back therapy, and 12 months with add back therapy. Orilissa is only approved for 6 months for the high dose, and 2 years for the low dose.

GnRh drugs are supposed to be second-line therapies, meaning that they are prescribed when first-line therapies (oral contraceptive pills and progestins) are ineffective, not tolerated or contraindicated. Yet some doctors put their patients on these right away, as soon as they suspect endometriosis, and for much longer than the FDA approved time frame.

Additionally, various studies comparing GnRh drugs to other hormonal medications such as the Mirena, Dienogest, Depo Provera, combined birth control pills, and others, have shown these other hormones (which a patient can be on for longer and that have a much lower side effect profile) to provide similar symptom relief to patients as GnRh drugs. This is another reason why GnRh drugs are second-line therapies, but unfortunately many gynecologists are giving them out as soon as they suspect endometriosis, without any conversation around the side effects, treatment time limitations, or equally viable options.

No medication can diagnose endometriosis

Some doctors say that if a patient (who is still undiagnosed with endometriosis) has pain relief on Lupron, it confirms that they have endometriosis, but this isn’t true. There are other reasons as well why a person’s pain could go down in a low menopausal state. As stated in the previous section on diagnosis, the only way to have a confirmed diagnosis of endometriosis is through a laparoscopy with a pathology report.

Pregnancy

Pregnancy is not a treatment for endometriosis. If a doctor recommends that you “just get pregnant”, it is definitely a red flag that your doctor is not knowledgeable about endometriosis.

Hysterectomy

A hysterectomy is not a definitive treatment for endometriosis.

This myth comes from a poor understanding of what endometriosis is, in part from the outdated endometriosis theory of origin of retrograde menstruation and the incorrect idea that endometriosis is from menstrual blood flowing backwards out the tubes into the abdominal cavity (see What Causes Endometriosis?). Endometriosis is not a disease of the uterus; in fact by definition, endometriosis is endometrial-like tissue found in extrauterine sites (ie, outside of the uterus). But due to this misconception that endometriosis is from retrograde menstruation from the uterus, unnecessary hysterectomies are performed on countless patients. It’s important to know that if a surgeon preforms a hysterectomy but doesn’t excise the endometriosis, that would actually be considered an incomplete surgery. To treat endometriosis, the surgeon has to excise the endometriosis lesions themselves.

In some instances, a hysterectomy may help people if their pain is actually because of problems originating in their uterus, such as adenomyosis. (Adenomyosis is not endometriosis, but is when endometrial tissue is found within the myometrium [the muscular portion of the uterine wall]). The role of a hysterectomy in a patient’s treatment is on a case-by-case basis that would need to be discussed in depth with an experienced excision surgeon – not just any gynecologist.

Organ removal is not a treatment for endometriosis. For any patient who is considering to have a hysterectomy (and/or bilateral oophorectomy which is removal of the ovaries), it’s important to have informed consent:

• Removing organs doesn’t treat or remove endometriosis. It will not dry up if you don’t have your uterus or ovaries anymore.
  
  
• Endometriosis can still make its own estrogen even if you have no ovaries, so the disease can still cause pain and/or progress.
  
  
• Excision is the gold standard and the only way to remove the disease. This should be the primary focus of treatment. Any consideration to remove your organs should be secondary to or done alongside the gold standard treatment of excision.
  
  
• Organ removal would only be potential pain management, and pain may still continue post organ removal.
  
  
• Removing ovaries earlier than natural menopause can result in an increased risk of diminished bone density, dementia, and cardiovascular disease.

Diet, Lifestyle, Supplements, etc

Diet, lifestyle, herbs, supplements, yoga, turmeric, celery juice, finding self-love, etc don’t remove, reverse, dissolve or cure endometriosis lesions, in spite of the many claims on the internet. However, any combination of these may help some people with their symptoms or overall quality of life (but it varies per person). It’s important to know that:

• Endometriosis can still progress on any diet/lifestyle – even if we are pain free.
  
  
• Pain going away doesn’t mean our endometriosis went away. This distinction is crucial.

See Endo is a Full Body Disease for ideas on a multidisciplinary approach to reduce inflammation, symptoms, and pain.

Surgery

Surgery should be done via laparoscopy, and not laparotomy. Recovery time is faster and there are less risks. There are 2 different surgical techniques when it comes to endometriosis: ablation and excision.

Ablation surgery

Ablation is the superficial burning of endometriosis on the surface level. However, the gold standard treatment for endometriosis is excision surgery done by an expert, because it actually removes the disease completely from tip to root. At many centers for expertise in endometriosis where excision is performed as the surgical approach, the rate of actual disease recurrence/persistence (disease coming back/disease remaining) is around 7-20%. But with ablation, disease persistence is fully expected, since the endometriosis wasn’t truly removed in the first place (and therefore persists). Ablation also leaves behind endometriosis buried under scar tissue. Because the disease isn’t removed, many patients end up having multiple ablation surgeries without seeing any long-term relief to their pain.

With excision, many people find that their pain significantly reduces and their quality of life improves. With ablation however, many find their pain returns within just months after surgery. Studies using quality-of-life comparisons and questionnaires before and after surgery have shown that excision provides more resolution to pain and symptoms, and longer lasting resolution, than ablation or hormonal medications.

Additionally, excision has several more benefits over ablation:

• Excision allows for the removed tissue to be sent to pathology for confirmation that it’s endometriosis, while due to the burning with ablation (and not the cutting out of tissue like with excision), the tissue is often unable to be sent to pathology for confirmation. In some instances with ablation, carbon or scarring from previous treatments is being treated rather than endometriosis.
  
  
• Due to the heat generated with ablation surgery, it usually cannot treat endometriosis on delicate tissues such as the bladder or intestines. With excision, the excision surgeon will often work with a multidisciplinary team, such as a general/bowel/thoracic/etc surgeon, to excise endometriosis from all organs where endometriosis is present.
  
  
• The burning of ablation surgery can lead to more damage by causing scar tissue. It can also leave behind carbon and thermal damage, which can stimulate a foreign body giant cell reaction and become its own cause of pain. Ablation can also bury endometriosis under scar tissue, making future excision surgeries more complex.

For a multitude of reasons like these above, some surgeons believe that ablation for endometriosis should be banned. While it’s up to you as an individual, many people find it’s better to wait to operate until they find a skilled excision surgeon, rather than do ablation.

Excision

Excision surgery is renowned in the field as being an extremely difficult gynecological surgery, requiring a high skill level to remove endometriosis from the delicate tissues, as well as separate organs that may have fused together due to adhesions. For example, the patient may have an obliterated cul-de-sac (the intestines fused to the uterus), ovaries stuck to the uterus, or the intestines fused to the pelvic sidewall. It takes careful skill to be able to tackle the complex surgical challenges that endometriosis presents.

The majority of gynecologists do ablation surgery, not excision. In 2020, it was estimated that there are only about 200 excision surgeons in the US, even though this disease affects an estimated 8 million Americans and 200 million people worldwide! There are many barriers to access excision, such as cost, location, insurance hurdles, long wait times, or lack of a referral due to inadequate education among doctors that excision is indeed the gold standard for care. Unfortunately, excision remains a privilege that the majority cannot access instead of being the standard of care that everyone can access, and this is unacceptable, disgraceful, and heartbreaking.

Because endometriosis is a complex inflammatory condition that can affect the full body, it’s recommended that the patient work with a multidisciplinary team with excision at the cornerstone to address the disease from a full-body approach. Additionally, endometriosis may be present with other co-conditions like adenomyosis, interstitial cystitis/painful bladder syndrome, pelvic floor dysfunction, small intestinal bacterial overgrowth (SIBO), gut dysbiosis, irritable bowel syndrome (IBS), hormone imbalance, hernia, occult hernia, pelvic congestion syndrome, musculoskeletal issues, fibromyalgia, and more. While many people do have significant improvement in their quality of life after excision surgery, others may need to identify and address co-conditions and secondary pain generators to see more relief.

While excision typically gives the best outcome since it actually removes the disease, there is no shame for choosing to do ablation surgery or managing symptoms via hormonal medications. What I advocate for is patients being able to make an informed decision. The problem is that many people are not being fully informed by their doctors of the risks or the limitations of treatments. When we have all the information, we can better choose the treatment option that is right for us – one that is affordable, accessible, and makes the most sense to us after having evaluated the risks, benefits, and our personal situation.