Excision Expectations

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Remember, this is educational information only and not medical advice (and I am not a doctor nor an expert on endo). Always check with your qualified medical professional before making any changes to your treatment plan.

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 somehow 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 think this idea is one that many of us have, but in my opinion, it’s not a very realistic one. Many people do have a reduction in their pain and symptoms post-excision, but 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.

In my own individual case, excision did rid me of all my endometriosis pain, and I still have this relief 5 years later! However, it’s important to understand what that means in context: Yes, I’m endometriosis pain free (and grateful everyday for it!), but I’m not symptom free. In spite of no longer having endometriosis pain, I still have pain and symptoms that are directly or indirectly related to endometriosis: whether its from common co-conditions or the past treatments I’ve done for endometriosis. In fact, my quality of life remained very low for about 2 years post excision, because surgery itself (losing an ovary, bowel surgery, the trauma of it all) seemed to jump start severe histamine and mast cell problems, SIBO, and low hormone output/perimenopause. All of which I’ve been working on for the last 5 years.

Adjusting my expectations.

Excision absolutely improved my life, but it didn’t make me “not sick” – even though it rid me of my endometriosis pain. It was a huge step for me, one in the right direction, that has served as a base for many of the other steps I took and am still taking. I think the biggest thing excision did for me was it relieved me of my worst symptom – my intolerable pain flares – and diminished many other hated symptoms, like my fatigue. It did give me my life back! I’m no longer in survival mode; I’m no longer living in fear of my bodily functions. But I still have to follow a strict diet, get enough sleep, do daily movement, and manage my stress, or I get run down and then can’t get out of bed from fatigue. I still identify as dynamically disabled. I can’t do whatever I want when I want – I can do a lot more than ever, but I still have to pace myself and pay attention to my body.

Some people may not have to do this anymore post excision, but in my individual case, I do – even though I consider my excision life changing and a huge success. The only thing I wish is that I could have gotten excision when I first got symptoms, before 15 years of untreated disease caused an endometriosis domino effect on my gut health, central nervous system, hormones, and body which I’m still dealing with today.

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.

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.

For me, one of the benefits of excision (in my own individual case) is that it’s rid me of all 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.

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).

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

Are there studies showing the 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.

Will excision make me 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 you will be pain free, won’t have complications, or that your endometriosis won’t persist or recur.

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. 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 get out of chronic pain. In my Instagram post here, I give my 5 year post-excision update and detail what this healing process has looked like for me.

An exploration into continued pain 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?

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. And that didn’t happen for me.

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:

  • 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.

“Recurrence/persistence of actual endometriosis can occur (albeit at a far lower rate than with fulguration, ablation, vaporization, etc.), even after sharp and meticulous dissection in the most skilled of hands – yes, even ours. 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.). This, then, does not imply lack of meticulous skill or excisional attempts on the part of the surgeon (who is, first and foremost, human, after all!) – but rather, can be attributed to the complex, insidious nature of this disease.” [Source: Was My Surgery a Failure? from the Center for Endometriosis Care website].

See my page on endometriosis recurrence for more detailed info.

Post excision, there were many surprises for me.

Recovery: I didn’t realize how long recovery would take, since my doctor said I’d be “back to normal” in two weeks and that was not the case, at all. See my Instagram post on surgery recovery here.

Effects of losing an ovary: I didn’t realize that removing an ovary (which I consented to) would cause me any hormone problems, since my surgeon told me I “would be fine” at 34 with one ovary.

Effects of bowel surgery: This one is conjecture on my part, but I believe bowel surgery may have worsened an already existing SIBO I had.

How many co-conditions I had: I had thought all my pain was endometriosis, but it was only post excision that I’ve been able to tease apart which symptoms were endometriosis vs another condition. This has allowed me to start addressing my co-conditions and see progress with reducing them. I was completely unprepared emotionally for how many co-conditions I had and it threw me into a dark depression. I had thought that excision would make me completely “better”, but in spite of the pain relief it gave me, my quality of life was still low for 2 years afterwards until I tackled other symptom generators.

The trauma of having surgery: Surgery was terrifying for me. It brought back a lot of trauma around past medical appointments and resurfaced the fear I’d felt for many years around my bodily functions. A lot of hypervigilance and catastrophizing – that I thought I had previously worked through – came back. I spent over a year trying to downregulate my nervous system, which went back to its previously “jumpy” and panicky state of chronic fight or flight.

The grief: I’ve heard a lot of people mention this about their excision, especially if it goes hand-in-hand with a confirmed diagnosis. The grief for the person who previously was invalidated, lacking a diagnosis, and having their symptoms actively dismissed by medical professionals. As I adjusted to my new life without endometriosis pain, I was floored by how much the pain had been limiting and affecting me both physically and emotionally.

Where am I at now?

Ten steps later and 4 years post excision,  I’m thrilled — and shocked — to say that my daily symptoms now hover around a 4 (out of 10; 10 being the worst). Very occasionally, they spike up to a 7. Just a 7! I’m not symptom free and don’t think I ever will be, but compared to the last two decades of living daily at a 7 (with weekly spikes up to 10), I’m doing so well.

When I first got sick, I thought there were only 2 states: sick or not sick. I wanted to be “not sick”. But now I understand that sick is a spectrum of symptoms from 1–10 that I will likely bounce around in for the rest of my life. Previously, having my daily symptoms at a 4 would have felt like a failure, but 22 years after I first got sick, it is a huge win. And I think that mindset shift has helped me so much, because if my goal is a cure or symptom free – those expectations aren’t realistic for some of us, and it just feels depressing because it’s out of reach. But when I accept that I have a disease (something that’s taken me a long time to do), and that there will be hard days, it’s a lot easier to deal with them physically and emotionally, as well as be overjoyed with my progress and the wins.

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.