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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.
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. If the doctor is not experienced enough to do a complete excision surgery (or doesn’t believe complete excision is necessary), they should be referring the patient to someone who can, instead of attempting this surgeries themselves.
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 endometriosis behind intentionally because they believe it’s too “risky” to remove, inconsequential (“inactive” they might say – although there is no way to know which lesions are causing a person pain and symptoms and which aren’t. All lesions should be removed) or that Lupron will clean it up. Some leave endometriosis behind unintentionally because they don’t have the skills to recognize subtle appearances of endometriosis; 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 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.
If you’ve had 2 or more excision surgeries with the same surgeon and are not getting relief from these surgeries, it may be a good idea to get a second opinion from 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?
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, and an endometrioma recurring doesn’t mean that your endometriosis has also recurred in other areas.
“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.)
Asking questions after your surgery
Here’s a list of some questions I put together to ask after your surgery, typically during the post-op appointment, but you can always ask at any time afterwards.
Be gentle with yourself
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.