No Surgery vs Bad Surgery
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It may be better to have no surgery than to have surgery with an inexperienced/non-expert endometriosis surgeon
While it’s up to you as an individual, some people find it’s better to wait to operate* until they find a high volume excision surgeon.
*Of course, there are less common situations where people need immediate surgery such as bowel blockages, ruptured appendix, ovarian torsion, and other life threatening situations. If you are choosing to wait to excise your endometriosis, work with your doctor to monitor your disease via scans, especially if they suspect bowel or ureter involvement.
Here are some of the common situations patients face with non-expert or less skilled endometriosis surgeons:
Ablation surgery
Many patients have had an ablation surgery, which didn’t provide long lasting relief, resulting in them needing an expert excision surgery anyways (meaning another surgery later on because the first surgery didn’t help). For some people, their pain worsens after ablation, which can leave behind carbon and thermal damage, stimulating a foreign body giant cell reaction and becoming its own cause of pain. Ablation can also bury endometriosis under scar tissue which can make future excision surgery more complex.
Incomplete surgery
Some people have an incomplete excision. It could be that the surgeon didn’t excise deep or wide enough, or the surgeon left behind endometriosis on an organ like the bowel or bladder (either intentionally or unintentionally). An incomplete surgery means not all endometriosis was removed, and this can result in continued pain and symptoms. Some people may then need to have another excision surgery as this one didn’t provide them with the relief they’d hoped for.
(Note: even with a complete excision, recurrence is possible, and some people may need multiple excision surgeries. However, various studies suggest that recurrence rates are impacted by the completeness of the excision, so having a complete excision each time could help improve surgery outcomes.)
Surgical complications or unnecessary procedures
Surgeons have different success and complication rates, some having much higher complication rates than others. For example, some excision surgeons have extremely high permanent colostomy rates when operating on bowel endometriosis, even though experts generally agree that bowel endometriosis is typically treatable without the need for a colostomy (and if in the low chance that the patient ends up needing one, it wouldn’t be a permanent one!) Surgical complication rates go down with the more skill and experience a surgeon has.
To me, this is the worst potential outcome of operating with a non-expert excision surgeon: patients can have injuries to their organs, long term organ dysfunction, bladder or bowel damage, injured nerves, etc and end up with more pain or symptoms than prior to their surgery.
Adhesions
Any surgery can lead to the formation of adhesions. These are bands of scar tissue that can glue organs together or narrow the intestines. Endometriosis can also cause adhesions. The formation of adhesions post surgery can make future surgeries more complex, which is why many excision surgeons recommend that your first (and hopefully only) surgery be excision with an expert, to avoid the need for reoperation if possible. Of course, some patients do have recurrence or decide to operate again for a hysterectomy or other reasons, but overall the goal is to reduce surgical interventions and adhesion formation.
Across the world, lack of access to high volume excision surgeons is a huge problem
Oftentimes, the only surgeon people have access to is a less experienced one because in their country there may be no access to a high volume expert and they aren’t able to travel. Because of this:
- Some people may wait to operate until they can go with a high volume surgeon.
- Some people may try to find the most experienced surgeon they have access to, understanding the surgeon’s limitations. For example, this might be a surgeon who has done an endometriosis-specific fellowship, but who hasn’t done many cases yet in their own practice. Or this might be an OBGYN who has done a MIGS fellowship (although no specific endometriosis training) and has many years experience doing various gynecological surgeries. See this Instagram post from EndoGirlsBlog to help understand the range of skills and experience different surgeons can have for endometriosis.
- Hopefully our surgeons will have honest conversations with us about their limitations and expected outcomes. If the surgeon feels they can’t safely excise from a certain location, like deep disease, or on the bowel, diaphragm, lungs, etc, they should know when to recognize their limitations and refer the patient to a more expert surgeon. What is too risky for one surgeon likely isn’t another with a higher skill level.
- Hopefully our surgeons will have honest conversations with us about their limitations and expected outcomes. If the surgeon feels they can’t safely excise from a certain location, like deep disease, or on the bowel, diaphragm, lungs, etc, they should know when to recognize their limitations and refer the patient to a more expert surgeon. What is too risky for one surgeon likely isn’t another with a higher skill level.
- Some patients may opt for a hysterectomy knowing it’s not a treatment for endometriosis (which by definition is located outside the uterus), but it may be the only surgery they have access to and they hope removing the uterus will remove a source of pain. Keep in mind that patients may continue to have pain and symptoms post hysterectomy.
Surgery can be an enormous financial, emotional, and physical undertaking for a person
Surgery is not to be taken lightly. There are risks, even in the best of hands. No outcome is guaranteed. The costs can be very expensive depending on insurance coverage. One should weigh the benefits vs the risks, and to do so you need informed consent, which is why it’s vital to ask the surgeon questions to judge their skill level, in order to operate with surgeons who consistently have good surgical outcomes in the procedures they are doing.