Why I'm Taking a Break from Health Care

I'm grateful for the medical care I get. But like many endo warriors, I have to see multiple kinds of specialists.

Scheduling and going to every appointment can feel like a part-time job. Many tests are painful or invade private spaces.

I've had lots of needle pokes and vials of blood drawn. More than one doctor has seen me naked, checked my breasts, and inserted a speculum into my vagina.

Four people were in the room during one pelvic exam — a surgeon, my husband, and two medical students. I'm not embarrassed about my body, but these kinds of appointments aren't relaxing.

I need a break from my health care team

While I like my current doctors, surgeons, and physical therapists, I've decided to take a break from my appointments until 2022. I feel kind of guilty about it.

How can I complain if I'm not doing absolutely everything I can to feel better? Will my symptoms get worse?

But sometimes, I need a break from all that poking and prodding.

People with endometriosis often have more than one health condition. I'm no different.

My issues are all linked to or made worse by endo or my menstrual cycle. This year, I've had my annual checkup and received care for:

I have seen so many types of doctors

I know people without a chronic illness who never go to the doctor, and I can't imagine what that's like. Even during the first year of the pandemic, I had regular video visits with my primary doctor and had to go to an emergency dental visit.

Later, I realized it wasn't a toothache but a trigeminal nerve issue. That's a nerve linked to migraine and increased sympathetic nervous system activity, which are both issues more common in people with endo.

Either in-person or virtually, I've seen the following throughout 2021:

  • Primary doctor
  • Endometriosis specialist, whose office is two states away
  • Social worker/counselor
  • Urogynecologist
  • Otolaryngologist (ENT)
  • Optometrist and ophthalmologist
  • Dentist

Surgeries related to endo

In March, I had excision surgery along with an appendectomy. It took me about 6 weeks to feel anywhere close to normal.

Because the recovery took so long, I had to reschedule a nasal surgery set for April. That surgery happened in the middle of November.

It's December, and I still have a swollen, bruised nose and post-surgery fatigue. I had the nasal surgery because I've been having more trouble breathing out of my nose.

What does that have to do with endometriosis?  Well, people with endo are far more likely to be diagnosed with allergies, which I have.

Those allergies can cause tissue in your nose called turbinates to grow so big that they block your nasal passages, which is what happened to me. I also get non-allergic rhinitis.

That means my turbinates or blood vessels swell, and I get a stuffy nose for reasons unrelated to allergies. It seems to happen at the drop of a hat, especially with strong scents, weather changes, and my period.

I can't find research linking non-allergic rhinitis to endo. But people with endo are more likely to have a central nervous system that reacts strongly to stimuli.

I also have a collapsed nasal valve. That means the cartilage in my nose isn't strong enough to hold up my nostrils.

It's been an issue for years, but it's gotten worse with age. Before the visit to my ENT, my doctor suggested I might have Ehler's-Danlos Syndrome, a connective tissue disorder that causes problems with collagen. People with EDS often have menstrual conditions such as endo.

I have had to cancel appointments

 
I'm not going to any more pelvic floor therapy visits this year. And I canceled a 6-month follow-up with my urogynecologist; I don't have anything new to discuss anyway.

I also postponed a dental appointment for a crown fitting — part of my back tooth crumbled the other day while eating ice cream. I'm not sure what happened with the tooth, but it's not the first time I've cracked one.

I grind my teeth when I sleep, which has only gotten worse during the pandemic. But it may be linked to EDS — one of the signs of poor collagen is brittle teeth.

Resuming doctor visits after my break

In January, I'll get a more permanent fix for my tooth, and I'll reschedule my PFT appointments when 2022 gets here. Until then, I'll keep doing my pelvic floor exercises. I'll check in with my regular doctor if I need to.

If you have endo, it's normal to get overwhelmed by everything you have to do to feel better. For me, the stress of constant doctor visits, even the good ones, can wear me out. I'm trying to give myself a little grace to take time to relax.

I hope you'll do the same.

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