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.
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?
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.