Medical Mayhem and the Hostile Uterus (not a bedtime story)

I read this quote recently that reinforced what I’ve long believed about our bodies not being our enemies. sonya quote for blog

As often happens, it came across my path at a time when I desperately needed it.  Just last week I sent this text to a very dear friend “My body has betrayed me!” And it will be no secret to my FB friends and family that I have spent nearly as much time at Kaiser Permanente over the last few months than I have anywhere else. I’ve put off writing about what’s been going on in part because I’m still fighting for some internal peace and also because I’m not sure how much or little to share. And I’m the first to admit I have a tendency to over share. I also am hesitant to sound like I’m whining or looking for sympathy. Then a friend asked if I thought writing about it could help someone else (besides providing a way for me to further process). And I acknowledged that perhaps it had the potential and so here I am, writing.

To make a very long story short, I have a hostile uterus.

From the pages of my art journal.

From the pages of my art journal.

After several years of heightened issues, I’m well versed in all sorts of medical terminology, but to boil it down, my uterus creates chronic swollen villi (clusters of grape sized “tumors”, not fibroids) which hang out and wreak all kinds of havoc internally.  Over the past 3+ years, doctors have treated this non-cancerous condition with a combination of surgical (d&c) and chemical removal of uterine lining. As well as a combination of high dose hormone injections/pills and pain meds.  The biggest issue for me is that it causes persistent painful cramping and unpredictable, prolonged heavy bleeding. The past year has been perhaps the worst, as symptoms have increased and the nonsurgical treatments simply aren’t working any more.  In November, I allowed a new Dr. (whom I really like and trust) to convince me that an IUD would help alleviate many of the symptoms.  I was willing to try almost anything at that point.  By early February I was insisting on a permanent resolution.  Though not quite at the point where I was willing to part with an internal organ, I sought from my doctor a more viable option.

As we all know, I’m fat.  To the majority in the medical profession that equals high risk and/or causation.  I’ve spent several years piecing together a medical team that does not treat me based on my weight.  My primary care physician is an “obesity” specialist who has never once mentioned to me weight loss surgery, diets, or any other topic related to weight in regards to my health.  In fact, this issue being the exception, I am a healthy fat person (most of us actually are).  My gynecologist matter o’ factly addressed my weight only as a potential risk factor for surgical options, primarily anesthesia.  This I knew and was not bothered by.  She suggested a uterine ablation, an outpatient procedure where they burn back the lining to the base of the uterus; sounds painful, apparently not so much.  This raised the question of ongoing birth control as an IUD would no longer be an option with a thinned uterus and I’ve pretty much ran the bases of hormones and their usefulness.  She suggested a nonsurgical sterilization process (since my hostile uterus makes full-term pregnancy a nonviable option anyway).  I said ok and was referred to one of the two doctors who perform this procedure at the clinic.  The FIRST thing this doctor said to me was, “have you considered weight loss surgery?”  The SECOND thing, “ALL your problems would go away if you would just lose all that weight.”  Note the use of “that” as if it weren’t even in the room with us, but some abstract evil thing hovering outside the door.  I was so unprepared for THIS conversation, I was dumbfounded, paralyzed. I can’t even imagine what story the expression on my face was telling. I was prepared to discuss sterilization procedures. I had questions to ask. I had things to confirm. But none of that mattered because A) she was going to refuse to do the procedure because of my weight and 2) I would not have let that woman touch my beautiful fat body with a ten foot surgical instrument.

I left that doctor appointment in shock and complete hopelessness.  What I knew is that I couldn’t sanely tolerate what was going on inside my body much longer and every plan that had been put in motion to resolve the issue had just been bulldozed by this weight bigot in a doctor frock. I got to my car and cried.  Not just for me, but for all the stories I’d read and been told about of other wonderfully rad fatties who had received similar treatment from medical professionals. I never had; I thought I had been able to imagine how it might feel. I couldn’t. It was much much worse, dehumanizing, degrading, shaming…. When I spoke with my gynecologist two days later, she was livid.  Even the medical notes had read like a bad fat shaming story.  She was ready to go to the mats for me, to find a doctor who would perform the procedure. But I was done. That had been my breaking point.

Publication1

A card given to me by my boss at the university.

I told her it was time to just take it out.  I wanted her to find the least invasive means to have my hostile uterus removed. I was asserting ownership of my body and was ready to evict!  She took a deep breath and said ok.  Next thing I know, I was scheduled to meet with the Chief of the women’s health department.  He conducts robotic assisted laparoscopic surgical procedures on high risk patients.  And she assured me that if anyone could make this happen it would be him.  I went to that appointment prepared to defend my weight and its non-connection to what was going on in my body.  But I didn’t have to.  He discussed the procedure with me, answered my questions, and asked a few of his own then told me that it was time for a definitive response to the issue.  He inferred that it was likely only a matter of time before the cells in the uterus would become cancerous so it was best to act now.  He said it was not without risk and that although the intention would be to do the procedure laparoscopically, there is a very real chance that they may still have to do an open cavity procedure once they have me on the table.  I am resolved.  And so in late June or early July, I will be having a Robotically Assisted Laparoscopic Hysterectomy with Bilateral Salpingectomy, Possible Bilateral Oophorectomy, Possible Laparotomy, Cystoscopy.  In layman terms, a laparoscopic hysterectomy, leaving my ovaries intact, with the possibility that they may need to cut me open.  The doctor mentioned above, should take note: THIS, THIS is going to make ALL my problems go away!! (ok, not all of them.)

Here are the things I wish I would have done differently during this journey of medical mayhem (and perhaps where others might learn):

  • I would have had more compassion for my body and accepted early on that this was my body’s way of trying to work its way back to wellness. Instead of feeling betrayed by the very body I claim to love and respect every day.
  • I would have liked to come to an earlier realization that this one organ, which is a part of me, does not truly define me as female.  It would have made it much easier to insist earlier on that they remove it.  I would have spent far less time in pain, discomfort, and worry.
  • I would have taken someone else with me to doctor appointments.  Either to just help “hold on” to all the relevant information, to act as a sounding board for the many thoughts and emotions swirling around in my head and/or to act as an advocate when I was struck dumb with disbelief.  And yes, I have a whole host of friends who would have willingly agreed to sit by my side during the many hours of appointments.
  • I would not have agreed to the IUD.  In the midst of all this other stuff, the IUD has “gone missing” (insert Scott’s joke about the UN looking for WMDs here). In women who have not had children, the IUD has a tendency to migrate (good to know).  Mine has…and the hunt is on, with ultrasounds, x-rays, CT scans, etc.
  • I wish I would have said to the weight biased doctor something along the lines of “oh really, ALL my problems? Will my student loan payments go away? Will my dog’s chronic diarrhea suddenly disappear? And, so on…” It wouldn’t have helped, but it might have made me feel more emotionally satisfied.
  • I wish I would have been more open to asking for the support of my friends, being more honest about the amount of pain I have been in and confided more openly about it all.  I fancy myself to be so independent that sometimes I don’t let others in in ways that would be helpful.  And I have the most awesome friends and support network, so why would I shut them out on any level?

This journey is not over. The procedure is not on the doctor’s schedule yet. There were some reasonable hoops he asked me to jump through and I’ve done so. Now just patiently awaiting his return to the office (he’s been out for a week) and word that it will be scheduled. I’m eager, but scared. I think that’s healthy. There will be recovery time I’m not looking forward to. A need to rely on the kindness and good hearts of my friends to assist during this time, which is hard for my independent spirit to accept.  And the need to allow time and space for emotional healing as well.  Sounds like a fun summer though, right?

It’s not my idea of a good time, but I’m so looking forward to having the medical mayhem and hostile uterus out of my life.

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