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My Excision Outcome
I had excision surgery in 2018. The excision was incomplete because the surgeon left behind a tiny bit of endometriosis in my rectum, which needed a bowel resection and the surgeon didn’t think the risks outweighed the benefits. It’s likely that another surgeon with more skill could have removed that endometriosis, but I’m glad my surgeon didn’t try to operate when he felt it was too risky, because that could have resulted in long term complications or damage to my bowel function.
Excision gave me immediate relief to my my painful sex, painful bowel movements, and painful menstruation. But it took 2 more years to improve my quality of life because of all my co-conditions – including new ones what arose post surgery. In my Instagram post here, I give my 5 year post-excision update and detail what this healing process has looked like for me.
It took 3 years post excision to full pain free, including fibromyalgia and intersticial cystisis pain free. I wrote about the process here: After 20 Years, I’m Finally Chronic Pain Free
Adjusting my expectations.
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.
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.
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 so many 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 5 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.