Endometriosis Treatment and Management Options
The treatment 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.
These are medications such as GnRh drugs (Lupron, Orlissa, Zoladex, Synarel, Prostap, etc) that medically induce menopause, oral contraceptive pills (birth control pill) or progestins (Visanne/Dienogest, Depo Provera, the Mirena IUD, etc). Hormonal suppression only manages the symptoms of endometriosis (in some people – not everyone sees symptom relief on these medications). These do not remove the endometriosis lesions, and endometriosis can still progress or recur while on these medications. 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. Additionally, any symptom relief is usually temporary and typically returns when the person stops the medication.
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 endo) 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 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.
A hysterectomy is not a definitive treatment for endometriosis. This myth comes 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.
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.
Ablation surgery is the superficial burning of endometriosis on the surface level. However, the gold standard treatment for endometriosis is excision surgery, 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 which can be its own cause of pain.
For a multitude of reasons, some surgeons believe that ablation for endometriosis should be banned.
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 specialists 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, 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.
For More Info
- Excision of Endometriosis – Article from the Center for Endometriosis Care (CEC). “Led by internationally renowned endometriosis expert Ken Sinervo, MD, MSc, FRCSC, ACGE, the CEC is a global leader in the care and treatment of the disease.”
- Why is endometriosis surgery so challenging? – Short article by world-renowned endometriosis excision surgeon and gynaecologist, Dr. David B. Redwine, M.D.
- Why excision is recommended – from Nancy’s Nook
- Treatment – From Nancy’s Nook, which is an incredible “endometriosis learning library.” This is the first article in their Treatment section, so make sure to check out the rest too!
- What Are The Indications for Hysterectomy? – Article from the CEC website by excision surgeon Dr. Ken Sinervo.
- Q&A with Dr. Redwine: Is Endometriosis Genetic? If so, why won’t it always recur post-operatively? – Short article by world-renowned endometriosis excision surgeon and gynaecologist, Dr. David B. Redwine, M.D.
- Hormonal Medication – From Nancy’s Nook.
- The Standard of Care is Not Sufficient – Post by Dr. Jeff Arrington from the CEC on how general gynecologists have been taught to treat endometriosis.
- Hormonal Therapy in Women of Reproductive Age with Endometriosis: An Update. – 2019 research article by Gheorghisan-Galateanu AA, Gheorghiu ML. Acta Endocrinol (Buchar). 2019;15(2):276-281. doi:10.4183/aeb.2019.276
- Endometriosis and Medical Therapy: From Progestogens to Progesterone Resistance to GnRH Antagonists: A Review – 2021 research article by Donnez J, Dolmans MM. J Clin Med. 2021;10(5):1085. Published 2021 Mar 5. doi:10.3390/jcm10051085
- Lupron – Informative links on side effects and limitations my Resources page.
- Orilissa – Informative links on side effects and limitations my Resources page.
- Surgical videos of excision – on the YouTube page of Dr. Abhishek Mangeshikar, excision surgeon.
- Ovarian Endometriosis – from the Center for Endometriosis Care website
- The Aggravating Endometrioma – from Nancy’s Nook
- Ovaries and Endometriomas – from Nancy’s Nook
- Ovarian endometriosis: symptoms, diagnosis, and treatment by Dr. David Redwine
- Endometrioma Drainage vs Excision – a discussion between 2 excision surgeons, Dr. Bindra and Dr. Moawad
Related Podcast Episodes
- Ep 16 – What Effectively Treats Endometriosis?
- Ep 22 – Bowel Endometriosis
- Ep 30 – Orilissa and Lupron. Part 1 – Big Pharma’s Influence on Endo Information
- Ep 31 – Orilissa and Lupron. Part 2A – How Effective is Orilissa?
- Ep 33 – Orilissa and Lupron. Part 2B – How Effective is Lupron?
- Ep 37 – Orilissa and Lupron. Part 3 – Side Effects
- Ep 39 – Lupron. The Potential Long Term Risks
- Ep 78 – What Does Endometriosis Look Like And Why Does It Matter?
- Ep 81 – Excision Surgery for Endometriosis. Part 1 – A Basic Overview
- Ep 82 – Interview with Excision Surgeon Dr. Vimee Bindra
- Ep 83 – Excision Surgery for Endometriosis. Part 2
- Ep 84 – Excision Surgery for Endometriosis. Part 3
- Ep 91 – What Can Hormonal Suppression Actually Do For Endometriosis?
- Ep 92 – Hormonal Medication Options for Endometriosis