Treatment Options

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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 Options

This page talks about surgical treatment options for endometriosis. See my page here for nonsurgical 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.

Endometriosis needs an individualized approach

This section on individualized approach is really important so I’ve written it on both my surgical and non-surgical treatment pages: Remember, endometriosis needs an individualized approach. Endometriosis is not a heterogeneous disease: it has different forms, can be in different locations, can have different biological activity, and cause different symptoms from one patient to the next. Patients also may have different co-conditions and other pain/symptom generators that need addressing.

Treatment also depends on patient goals, accessibility, and tolerability. 

For example:

  • What role does fertility play for you? Are you dealing with infertility? 
  • Do you want to have surgery? Do you have medical conditions that prevent surgical care? Is surgery accessible to you in terms of location/cost, etc?
  • What have you already tried? What has helped and hasn’t?
  • What kinds of side effects/consequences do the treatment options have? For example: X hormonal suppression helped symptoms but had intolerable side effects that made it impossible to stay on. Diet changes helped, but triggered disordered eating.
  • Have your symptoms worsened over time?

Surgery

Surgery should be done via laparoscopy, and not laparotomy. Recovery time is faster and there are less risks. Laparoscopy can be via robotic surgery or a standard laparoscopy – both techniques can potentially give the patient a good outcome with low complication rates. For more in depth info, see my page here.

There are 2 different surgical techniques when it comes to endometriosis: ablation and excision.

Ablation surgery vs excision surgery

Ablation surgery is the superficial burning of endometriosis on the surface level. 

Excision surgery is the removal of endometriosis lesions at the root. Excision is the only treatment that is able to fully remove endometriosis from all locations (but how complete the lesion removal is depends heavily on the surgeon’s skill). 

The gold standard treatment for endometriosis is excision surgery done by an expert.

Patient outcomes

With excision, many people find that their endometriosis pain significantly reduces and their quality of life improves. With ablation however, many find their endometriosis 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.

Recurrence rates

Among many high volume, expert excision surgeons, the rate of actual disease recurrence / persistence is around 7-20%. When it comes to ablation though, disease persistence is fully expected, since the endometriosis wasn’t truly removed in the first place (and therefore persists). Because the disease isn’t removed, many patients end up having multiple ablation surgeries year after year without seeing any long-term relief to their pain.

Recurrence means disease coming back after surgical removal. Persistence means disease remaining because it wasn’t removed during the surgery.

Are there studies showing these benefits of excision?

Yes! The Center for Endometriosis Care has done an amazing job listing out many studies on their page Excision of Endometriosis. On the Nancy’s Nook webpage, they also list several studies in their article Why excision is recommended.

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 leaving behind carbon and thermal damage, which can stimulate a foreign body giant cell reaction and become its own cause of pain. Some people find that after an ablation, they have more pain than before.
  • With ablation, the surgeon isn’t able to see how deep into the tissue the endo is. Even most superficial endometriosis is deeper into the peritoneal surface than 2 mm, which is about the depth that ablation can burn off. Because of this, ablation can bury endometriosis under scar tissue. This can cause more pain, and make future excision surgeries more difficult.

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 and ablation are very different and shouldn’t be lumped together.

This is a huge problem in endometriosis care: excision and ablation are often lumped together in studies, online articles, and even endometriosis guidelines.

USA guidelines: The ACOG Practice Bulletin 114 on endo talks about “surgical therapy” and “laparoscopy” but gives no recommendation on excision vs ablation for the surgical treatment of endo pain. The ACOG Committee Opinion for Dysmenorrhea and Endo in the Adolescent also talks about conservative surgical therapy with no recommendation on excision vs ablation: “lesions should be destroyed, ablated, or excised”.

We should be distinguishing the type of surgery when we talk about surgery outcomes, risks, recurrence/persistence rates, etc. Not doing so keeps excision inaccessible because it holds us back from making endometriosis care into a much-needed subspeciality. It prevents surgeons in the USA from being properly reimbursed for doing excision, which is currently paid the same as a much shorter and less complex ablation surgery. This also affects surgical training. Why train in excision when you can just do ablation?! Endometriosis surgery is endometriosis surgery, right? Wrong!

We also need to keep in mind that all excision isn’t equal either because excision depends on the surgeon’s skills to recognize and remove endo.

Excision surgery requires a high volume, expert excision surgeon.

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.

See my page on how to find an excision surgeon. 

When might excision be the next best step for a person?

That depends on the patient’s individual situation and goals. Discuss the potential risks vs benefits with an expert surgeon to help you make an informed decision. 

Here’s some common examples when a person may decide excision is their next best step:

  • If nonsurgical management options haven’t helped. Or maybe some of these options have helped reduce symptoms, such as hormonal suppression, but brought with it unwanted side effects that the patient decides isn’t worth tolerating. Sometimes with these medications, patients change one set of symptoms for another set of side effects that equally diminish their quality of life.
  • Infertility.
  • Large endometriomas.
  • With bowel blockages, ruptured appendix, ovarian torsion, lesions on ureters that are damaging kidney function, and other life threatening situations.

Surgical gatekeeping

Sometimes, when discussing if excision is our next best step, our surgeons want us to “qualify” for excision in some way. Unfortunately, this is quite common in some countries (mostly outside of the USA). As a patient, it can be hard to navigate the surgical gatekeeping, especially if there’s very few excision surgeons in your country. 

Some examples might be:

  • “I’ll only operate if you do Lupron/Zoladex/another hormone for X months first”.
  • “I’ll only operate if you try all other options available and they don’t work for you.”

That isn’t to say that your surgeon doesn’t discuss other options with you – that is part of informed consent to explain all the different treatment and management options and work with you to make the best choice for you. First line treatments are typically pain medications and birth controls. But one thing is discussing options, and another is telling you that your surgery is conditional on X factor, like you trying Zoladex first – especially if you’ve already tried multiple hormones to manage endometriosis symptoms and they haven’t helped or you feel the side effects they cause aren’t worth the pain relief. Who decides if nonsurgical options don’t work for a patient and when enough is enough, and it’s time to move onto surgical options? In my opinion, the patient should.

Another example is when surgeons don’t want to operate because you “only” have superficial endometriosis or your scans don’t show signs of deep endometriosis. It’s not fair to withhold quality care from patients who “only” (their emphasis, not mine) have superficial disease or an endometrioma. Superficial disease can also cause pain, and that the stage of endometriosis doesn’t correlate with the level of pain a patient feels. The patient should have the option to excise it if that’s what they want.

Excision surgery is just one step.

Full body approach

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. 

See my pages on non-surgical options and full body approach

Co-conditions

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.

Ideally, we’d have an early diagnosis or suspicion of any co-conditions we have, so we can start tackling all of them as soon as possible. But what often happens is that once a person gets excision and sees pain/symptom relief, they start to untangle their they see which was endo and not, realize they have more co-conditions, and start tackling them

Additional excisions

Some may need a second excision surgery as well, since recurrence does happen – even in the hands of the top tier surgeons. Persistence/recurrence rates tend to be lower among more experienced excision surgeons, but all surgeons have persistence/recurrence. Recurrence can depend on the surgical technique, the surgeon’s skill, the completeness of the excision, the type of endometriosis, location of the lesion, patient’s age, patient’s genes, the length of time post-excision, and other factors.

While excision typically gives the best outcome since it actually removes the disease, it’s important to remember that it’s not a cure. There’s also 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.

Managing excision expectations

While excision generally provides more resolution to pain and symptoms, and longer lasting resolution, than ablation or hormonal medications, it’s important to remember that it’s not a cure. See my page on Excision Expectations

You need to make the best choice for you

There’s also 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.

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