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Remember, the information on my website, podcast, Instagram, and any other ways I communicate and/or produce content is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan for endometriosis or any other health problems. See my full disclaimer here.

Excision Expectations

When I first learned about excision, I was brand new to endometriosis. I wasn’t even diagnosed yet, but rather after 16 years I finally had a suspected diagnosis. While I’m grateful to that gynecologist for finally recognizing my severe symptoms as endometriosis, her options of “get a hysterectomy or go on Lupron” weren’t helpful.

In a Facebook group, I learned about excision: how it could remove the disease at the root, and most importantly – how it had given many people their life back. I was super excited at the prospect of having the gold standard treatment. I knew it wasn’t a cure but initially I thought that if I had excision, it would rid me of all my pain and symptoms, and I’d feel like I did prior to having gotten sick. I didn’t realize that this wasn’t very realistic, but it was a hope I desperately had after hearing some amazing excision success stories.

I think this idea is one that many of us have. We bet everything on excision, because excision is the gold standard and so many advocates, including myself, push for excision to be more accessible to any patient that wants it. This is because it’s the only treatment we have that actually removes the disease, and many people do have a reduction in their pain and symptoms post-excision, an improvement that they often couldn’t achieve with non-excision management options. However, they may not necessarily feel like they no longer have a disease. And it’s important to point out that not everyone gets pain relief from their excision either, even after a complete excision from high volume surgeons. Those are 2 facts that I really wasn’t aware of when I had my excision. 

Why is excision the gold standard treatment?

Excision surgery is the removal of endometriosis lesions at the root. This is different from ablation surgery, which superficially burns the endometriosis surface. 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). Learn more about excision on my Treatment Options page.

For me, one of the benefits of excision (in my own individual case) is that it’s rid me of my endometriosis pain but without the side effects that hormonal suppression had for me. Some hormonal suppression options did provide me some endometriosis pain relief, but at the cost of intolerable side effects that kept my quality of life low.

Will excision make a person become pain free?

There are no guarantees. Having excision surgery, even with high volume, top tier surgeons who consistently have good patient outcomes and low recurrence rates, doesn’t guarantee that one will be pain free, won’t have complications, or that their endometriosis won’t persist or recur.

Surgery also has risks and with excision being the most difficult gynecological surgery, the surgeon’s skill is very important. But even with high volume excision surgeons, patients can still have complications (and/or recurrence/persistence) – although these rates tend to go down with the more experience a surgeon has.

Excision is step 1 of a multidisciplinary, 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 to see the best improvements in their quality of life. To me, I think that is what excision is about – trying to improve quality of life, but not aiming for the goal of feeling “cured”.

Excision is just one step – an important step, but one that typically needs to be accompanied by other steps for a patient to see their best symptom relief. For me, it was probably a 3rd or 4th step – it wasn’t the first thing that helped, nor was it the last.

In my own case, excision did relieve me of my painful sex, painful bowel movements, and painful menstruation. They were not only painful, but excruciating prior to surgery and my bodily functions terrified me. However, in spite of this incredible and immediate pain relief, my overall quality of life didn’t improve until about 2 years post excision. It was only once I addressed my gut health, hormone health, mental health, and tendency to be in a heightened state of alert that I was finally able to not be in survival mode every single day. And about 3 years post-excision, I become 100% chronic pain free, including my bladder and fibromyalgia pain.

Even though I did get immediate and complete relief from my endometriosis pain (which I still have 5.5 years later), and some relief from fatigue and other symptoms, I was not prepared for how low my quality of life would remain until I worked on my co-conditions, which I didn’t even know what they were or even that I had them until post-excision. That was a shock to me, and I had suicidal ideation during that time from how devastated and hopeless I became with my situation.

I’m now 5 years post excision, and I write about my outcome here. Even though I’m currently pain free, I’m not completely symptom free.

An exploration into continued pain and symptoms post-excision often includes the following questions:

(See my article Addressing Pain Post-Excision for an in-depth write up.)

  • Do I need to treat other pain generators and co-conditions?
  • Will I find more relief using a full body approach?
  • Did I actually have excision surgery or was it ablation?
  • Did I have a complete excision or was endometriosis left behind?
  • Do I have true recurrence of endometriosis?

These questions can be helpful explorations to try and discover how we can continue to improve our quality of life and what we need as individuals in our own unique situation. Post-excision pain is not a patient’s fault, no matter the circumstance, and these questions aren’t intended to blame or shame anyone.

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 be lost as to where to go from here, especially if our excision surgeon only does excision and doesn’t have recommendations or referrals for post-excision management of endometriosis. In my own case, I was completely unprepared both mentally and physically for the whole other journey post excision that I needed to go on in order to improve my quality of life. It threw me into a dark depression, because after 16 years of horrendous symptoms to get diagnosed with endometriosis, I just wanted to feel better and be done with illness once I got my excision, the gold standard of care. And that isn’t what happened.

Years of untreated endometriosis can have a negative domino effect.

As we go for years with untreated disease in our bodies, there can be more cytokines and chronic inflammation, more structural changes pulling on our anatomy and fascia, more pain modulations, and more nerve fibers going from endometriosis lesions to the central nervous system.

We may start with endometriosis, and over the years the dominoes fall and we then have multiple more diagnoses and symptoms because of endometriosis’s direct or indirect effects on the body: pelvic floor dysfunction, SIBO, fibromyalgia, interstitial cystitis/painful bladder syndrome, central sensitization, and more. Not to mention the impact that having endometriosis and any other co-conditions has on our mental health! We may have several number of co-conditions causing us symptoms that now need treating!

Additionally, we may have iatrogenic effects from previous surgeries or medications, which can negatively affect our health outcomes and quality of life:

  • Lupron has caused some people serious, long term side effects for years after stopping the medication.

  • Ablation surgery may have trapped endometriosis under scar tissue, making your excision surgery even more difficult.

  • Surgical complications may have caused nerve damage or the need for a catheter or a colostomy bag.

  • A hysterectomy or oophorectomy may have put us into early menopause or have caused low hormone output which now needs hormone replacement therapy to help alleviate those symptoms.

  • We may have had a misdiagnosis which resulted in us taking medications or doing treatments (and unfortunately experiencing those side effects) for a disease we don’t even have.

Will I have endometriosis recurrence?

There’s no way to predict that prior to surgery. Recurrence rates vary in the literature, but if we use 20% as an excision recurrence rate, then out of 200 million people worldwide with endometriosis, that is 40 million people who will have endometriosis recurrence.

Some people will need to have another complete excision, or multiple excisions, even when they see high volume, top tier surgeons. Or they may need another surgery for adenomyosis or adhesions, even though endometriosis didn’t recur.

See my page on endometriosis recurrence for more detailed info.

For more information

My 5 years excision update – An Instagram post were I give detailed info here on my progress year by year, and the process of exploring my co-conditions

Addressing Pain Post Excision – I have a lot more details here plus resources.