How I’m Doing One Year After Excision Surgery

I am one year post my second excision, and while my pain is reduced, I still struggle in some significant ways.

Before surgery last year, I had lost mobility. My left ankle and heel hurt nearly constantly, and despite seeing a foot and ankle doctor, a spine doctor, a couple of physical therapists, and my primary care physician, no one had an answer.

I had an X-ray that showed a small bone spur in my heel and an MRI that showed slight degenerative changes, but nothing that would signal the kind of pain or loss of mobility I experienced.

I struggled to go upstairs, I had near-constant heel and Achilles tendon pain, and if I decided to take a walk in my neighborhood or go for a short hike in the neighboring woods, I paid for it for days.

I tried gentle yoga, CBD oil, arnica gel, NSAIDs, meditating, and ice. Nothing helped for long, and I started to suspect I had sciatic endo or some other kind of nerve involvement.

Seeking help from my doctor for my pain

I brought it up to my fantastic gynecologist, who had done my first excision surgery the previous summer. She said she had heard of sciatic endo but didn’t know much about it. She recommended I speak with a doctor located in Boston.

After waiting months to see him, I had a phone consult. He heard my symptoms and said that he thought it could be sciatic or sacral nerve endo.

In my experience, there are just a few surgeons in the United States who have the expertise of excise endo involving nerves. I was lucky enough to be able to find one. We scheduled surgery in May.

Getting through recovery

Sure enough, in addition to the large endometrioma growing on my remaining ovary, the surgeon found a large endo nodule growing “dangerously close” to my sacral nerve. During surgery, I had my last ovary removed, a lot of endo excised from my pelvis, and the nodule near my sacral nerve taken out.

Recovery was prolonged. I also have mast cell activation syndrome (MCAS) and dysautonomia, and I suspect I have hypermobility as well. All of these illnesses can cause slow surgery recovery, so I took six weeks off.

I wasn’t back to a relatively normal baseline until the beginning of 2022. I missed work, battled daily dizziness and fatigue, experienced brain fog, struggled with depression, and also had persistent pelvic pain.

About two weeks after surgery, I went to the emergency room for unexplained bleeding and bladder issues. The bladder issues were eventually resolved by midsummer, but the pelvic pain continued.

I started pelvic PT and reintroduced gentle yoga stretches to my daily routine. I had two or three bleeding episodes (enough bleeding to need tampons for several days) even though I no longer had my ovaries.

My gynecologist suspected these happened as a result of trying to put me on a very low-dose estrogen patch as a hormone replacement trial to relieve night sweats and hot flashes.

Not regretting having surgery

It took me several months after that to try to even things out, but I no longer have any bleeding, and the pelvic pain has retreated as well. My night sweats and hot flashes continue, although not as severely as those first few months after surgery.

The heel and Achilles pain flare now and then if I don’t wear shoes with good ankle and heel support or if I walk too long on concrete or asphalt. But I was able to drive cross-country for a move and move into my new apartment, both quite taxing on my body, without my endo flaring (but my dysautonomia certainly flared!).

I rarely have pelvic pain these days, and if I do, I suspect it is in response to something I ate. I have a pretty strict diet, but I cannot seem to let go of chocolate, and I have histamine issues because of MCAS that likely also flare my endo.

Thankfully, I can say that I am a great deal better than I was a year ago, and I have no regrets at all about having the surgery. When the ankle/heel and sciatic pain made a comeback this winter, I booked in to get another consult from the Boston surgeon.

We had our appointment nearly one-year post-surgery, and his advice is to wait and watch to see if the pain worsens. He suspects I could have scarring that is aggravating the nerve rather than regrowth of endo.

So, for now, I am taking it day by day and hoping that my symptoms either remain the same or decrease.

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