Treatment & How to Find a Specialist

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.

Treatment (with info on how to find an endometriosis specialist)

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.

Hormonal Suppression

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

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 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.

Surgery

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

Endometrioma Information

How to Find an Endometriosis Excision Surgeon

Anyone can call themselves an “expert” or “specialist” in endometriosis, because there is no formal standard in gynecology to qualify to use that title. A doctor might call themselves an endometriosis expert/specialist, but is only doing ablation or is only prescribing hormone treatments, and doesn’t even do excision.

A good endometriosis doctor is a highly skilled, high volume physician (often 100+ excision surgeries per year with 5+ years experience) who understands endometriosis and how to properly diagnose and treat it. Often they solely treat endometriosis and don’t practice obstetrics or general gynecology at all. It is not enough to have done a MIGS (minimally invasive gynecologic surgery) fellowship – the surgeon must know how to recognize endometriosis in all its colors, appearances, and locations, and how to safely excise it from all locations. The surgeon will not leave endometriosis behind because Lupron will supposedly clean it up. (It won’t!) They won’t leave endometriosis behind because endometriosis is supposedly the endometrium from retrograde menstruation (it’s not) and “it will just keep coming back with every menstrual cycle so why remove it all?” (It won’t). They won’t leave endometriosis behind because they didn’t do good pre-surgical planning and didn’t have the multidisciplinary surgeons they needed in the OR. They won’t leave endometriosis behind because it’s too “risky” to operate on the bowel, bladder, etc. (It’s generally not if the surgeon has the right training, experience, and skills.)

Excision surgeon is renowned as the most challenging gynecologic surgery. Even among doctors that do excision surgery, their skill levels and experience vary. Excision surgery is highly operator dependent, so the skills and experience of the surgeon are crucial and influence the surgery outcome. For this reason, many people are choosing to go to leading endometriosis centers that perform excision surgery as a component of their multidisciplinary approach to endometriosis, such as the Center for Endometriosis Care in Atlanta. Unfortunately, many people have to travel to find quality care; some people have to leave their country to get excision, if they can even get excision at all.

iCareBetter and Nancy’s Nook (links below) are two great starting places to find an excision surgeon, but it’s worth repeating that not all excision surgeons have the same skill level or experience. Even if you find a surgeon using their lists or another peer-reviewed list, it’s still imperative to vet the surgeon, look at patient reviews/lawsuits, and ask them questions (links below) to make sure they have the appropriate skill level to treat your case. You can use Google, social media, endometriosis FB groups, Reddit, Open Payments, and more to gather information on your surgeon to decide if they are the right fit for you. Also, just because you have surgery with one of the doctors on the iCareBetter or Nancy’s Nook lists doesn’t guarantee that you will be pain free afterward, that you won’t have complications, or that endometriosis won’t persist or recur.

Likewise, having surgery with an excision surgeon that you found and vetted that aren’t on those 2 lists doesn’t mean you are guaranteed to have a bad outcome. Some excision surgeons do not have a social media platform, are not well known, or work at academic institutions and rely on referrals instead of advertising to find patients. However, remember that anyone can call themselves an expert or specialist in endometriosis, so it’s vital to vet the surgeon and ask questions about their beliefs, training, number of excisions, experience, industry ties, outcomes, complication rates, rates of reoperation/recurrence, ability to treat complex cases, etc.

Resources

  • Nancy’s Nook Facebook Group – This private Facebook group has a list of excision surgeons worldwide in the Files section, and in another file explains how the surgeons are chosen to be put on their list. Skill level and experience vary among the surgeons listed. Even if you find a surgeon here, it’s still important to vet the surgeon to make sure they are qualified to treat your case.

  • iCareBetter– This platform helps connect patients to endometriosis surgeons via a peer to peer double-blind vetting process for their surgical and excision skills. Skill level and experience vary among the surgeons listed. Even if you find a surgeon on their platform, it’s still important to vet the surgeon to make sure they are qualified to treat your case. (Also – they list Pelvic Floor Therapists, but I don’t know how they find them or if they are qualified to work with patients with endometriosis.)

  • AAGL Physician Finder – Database with over 7000 surgeons that helps you locate surgeons within your area who perform minimally invasive gynecologic surgery.

  • How to Find a Doctor – A post from Nancy’s Nook, which has a great overview on what matters and what doesn’t matter when choosing a surgeon.

  • Questions to Ask Your Surgeon 1 – A list of questions from the Center for Endometriosis Care.

  • Questions to Ask Your Surgeon 2 – A list of questions to consider when vetting your excision surgeon, from Melissa at Eighty-Six the Endo.

  • Questions to Ask Your Surgeon 3 – Another great list of questions to consider when vetting your excision surgeon, from Kate at Endogirlsblog.

  • Health Grades – Database with doctor profiles where you can see patient ratings on them.

  • Open Payments – Look up your doctor and see if/what payments were made to them by drug and medical device companies.

Dealing with Insurance

In many cases, excision surgery is considered out-of-network for US insurance providers. That being said, there are also excision surgeons who are in-network with insurance; it will depend on the individual surgeon. Being in- or out-of-network doesn’t guarantee a good outcome for your surgery. Some surgeons have poor excision skills and are out-of-network; some have excellent skills and are in-network.

Continued Pain and Symptoms Post-Excision

It can be really heartbreaking to have continued pain and symptoms post excision surgery, especially if we didn’t get the outcome we were hoping for, especially if we waited years for treatment, or had to travel out of our country to get excision, or went into debt, or we quit our jobs or were fired because they don’t give us the PTO we needed to recover post surgery. There are many ways in which surgery can be a big decision and undertaking physically, emotionally and financially. If we don’t get relief from our pain or symptoms, it can feel hopeless and one can wonder where to go from here.

Every person is different and needs an individualized approach. Here are some questions to explore:

Did I actually have excision surgery or was it ablation?

The post op report, or clarifying with your doctor, can help confirm the type of surgery you had. Some surgeons do ablation instead of excision, or a combination of ablation and excision. For example, the surgeon excises your endometrioma, but ablates your superficial peritoneal lesions.

Did I have a complete excision or was endometriosis left behind?

Excision really should be one surgery done right, with complete excision on all areas where there is endometriosis. But some surgeons leave endo behind intentionally because they believe it’s too “risky” to remove, inconsequential, or that Lupron will clean it up. Some leave endo behind unintentionally because they don’t have the skills to recognize subtle appearances of endo; or they don’t excise deep enough or with wide enough margins. Excision surgery is highly operator dependent. Unfortunately, there are only a few hundred excision surgeons worldwide, and their skills vary, their experience varies, the number of surgeries they do a year varies, and so excision is not the same among all of us. If you haven’t already, it’s never too late to ask your surgeon questions (3 questions lists above) to judge their skill level and experience with recognizing and excising endometriosis. You can also ask for your surgery pictures – or video if they have it – and get a second opinion with another excision surgeon.

Do I need to treat other pain generators and co-conditions?

See my page on Common Co-Conditions.

Will I find more relief using a full body approach?

See my pages on Full Body Approach, Chronic Pain, and Mental Health.

Do I have true recurrence of endometriosis?

Endometriosis can recur in about 10-20% of people, and some people do need multiple excisions for their endometriosis. Endometriomas can have high rates of recurrence, even when excised by an expert. “Interestingly, some data imply that true recurrence may actually be higher in patients with lower stage disease (Koh, et. al.) vs. advanced stages. It has long been noted in the literature as well that some disease in younger patients is more ‘aggressive’ with a ‘higher recurrence rate’ and may even be a ‘different form of endometriosis altogether’ (Dovey et al.).” (Source: Was my surgery a failure? from the CEC.)

 

If you are still having pain and symptoms post excision, I’m so sorry to hear that and I see you. Please don’t judge yourself if you didn’t have the outcome you were hoping for, because it’s not your fault.

Endometriosis is a horrible disease, it’s under researched, misunderstood, riddled with misinformation, and the gold standard treatment is inaccessible to the majority of patients, and even for the patients who have access, they often have to wait years or make financial or personal sacrifices to access it. The medical community needs more surgeons, more training, more excision-specific fellowships, more multidisciplinary specialty centers, actual excision insurance reimbursement codes, the list goes on.

And we patients are suffering from the lack of access, doing the best we can for ourselves in the system that exists. While we are grateful to the surgeons who devote their careers to endometriosis and have learned how to properly excise it, the overall medical system is a disgrace when it comes to treating a disease that affects 200,000,000 people worldwide.

Excision is inaccessible to the majority. For those who want to have it but can’t access it, I truly hope it will become accessible to you in the future.