Why I fired my primary care doctor after 10+ years.

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I’m still weird about putting too many pictures of myself online… here’s a nice sunglasses selfie!

Sometimes I just can’t believe the personal details I put online.  To be honest, I think that’s why I don’t work on this blog as often as My Sacroiliac Joint Saga.  It’s super easy to provide people with factual information, with only a few personal tidbits thrown in.

This blog, though?  This is the one I almost don’t want anyone to read. (Except not really, so keep reading!).

But I also know that what I put out there can help people– and it helps me, to know that I’m helping others.

So I thought I’d share with you why I decided to “fire” my primary care doctor, who I’ve been seeing for over ten years. This also means I’ll be leaving the medical practice I’ve literally been a patient at for my entire life (my Mom took me there when I was a baby).

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As some of you know, I recently ended up in the emergency room fearing I had nerve damage, following what should have been a routine adjustment at the chiropractor.  I’m lucky that it did not turn out to be permanent.  However, the entire thing was incredibly stressful for me– I was in and out of two emergency rooms.  I cried, I hyperventilated, I thought I was going to faint.  I mean… imagine wondering if you were going to be walking like a drunk person for your entire life?  My heart goes out to the people for whom this is permanent.  I’d had no idea what it was like.

As you can imagine, this entire thing was incredibly stressful on my body.  Normally my resting heart rate is fairly low (once a long-distance runner, always a long-distance runner!).  But the stress and fear kept it soaring all weekend long.  At one point, one of the nurses strongly suggested I take the anxiety medication they were offering me because, medically speaking, they wouldn’t be able to discharge me with my heart rate as high as it was.

And then, 24 hours after that, when I was still walking funny and not totally convinced I was going to recover, my period came.

And it wasn’t a normal period for me.  I know that it’s common for some women to experience spotting or early periods due to stress, but it has literally never happened to  me before.  It didn’t feel like a normal period– this felt less like a gently flowing river, and more like an avalanche. I had cramps I’d never experienced before.

In retrospect, it probably would have made more sense for me to follow up with my OB-gyn’s office about this.  But I was still sort of in panic mode, and not thinking clearly.  So I went to my default option and called my primary doctor’s office.  After all, that’s what my discharge instructions from the emergency room said to do.

And I could not believe how rude she was to me.  

Normally, this doctor is very polite.  She and I haven’t always seen eye to eye over the years, when it comes to things like fibromyalgia and central sensitization.  My impression is that she doesn’t really know what central sensitization is– like many doctors I’ve met, it seems to be hard-wired into her brain that any symptoms of this sort have to be connected to mental health.

So she has said some things over the years that really irked me, or sounded skeptical when I described sacroiliac joint dysfunction.

However, at the same time, she never turned me down when I asked for a referral to see a specialist, or a physical therapist.   My requests were always processed promptly, so I felt like our difference in perspectives wasn’t necessarily affecting the outcome of my care.  (Because really, a primary care doctor isn’t the one I’d expect to have answers about central sensitization or SI joint dysfunction anyway).

But that day, I saw how our difference in philosophy could have life-altering implications. 

Because we weren’t talking about musculoskeletal pain, we were actually talking about my reproductive system.

And she was totally dismissive.  It turned out later she’d tried to send me a message telling me I should follow up with my OB-gyn, but at the same time, her staff members were calling me to try to set up a same-day appointment with her.  So, reasonably, I expected that she wanted me to come in.

So I got into the room with her and told her I was concerned about this strange early period, as it was totally abnormal for me.  I wanted to make sure that between the chiropractic adjustment and the potential nerve damage (which had not officially been ruled out) nothing weird was going on with my uterus.

And she looked at me like I had two heads.  “You know your insurance is going to charge you a lot if I do a pelvic exam on you, right?  Those are expensive.”

Her tone and her expression, though, were not out of concern. Instead, they seemed to be out of annoyance.

“The hospital discharged you for a reason.  And you’re still worried?”

In my head, I thought Why is this woman not just examining me?

She continued, “You know, a pelvic exam isn’t really going to rule out everything that could be wrong with your uterus.  For that, you really need an ultrasound” (which they weren’t going to be able to perform at her office).

We sort of stared at each other for a few seconds and finally, the ten years of being dismissed got to me.

I said, “You know, I have to be honest.  I don’t really feel like you’re taking this seriously.  I’m starting to feel like I shouldn’t have come here… why did you let me come here?  You should have just told me to go straight to the OB-gyn for an ultrasound.”

That’s when she paused, and gulped.  “I did tell you that… I sent you a message online telling you I thought that’s where you should follow up.”

Then she realized her mistake.  She’d assumed that I’d seen her message, and decided to come in to her office anyway, like some paranoid hypochondriac who wanted to be seen in two places, when one would suffice.  That’s why she was being so dismissive.

I felt the anger welling up inside me, but I’m proud of myself because I kept it classy.   I said, “So, without the ultrasound, we don’t really know what’s wrong?  So we can’t really say there’s nothing wrong with my uterus, can we?”

Embarrassed, she shook her head no.

And I’m telling you– I am so proud of myself for the way I handled this.  I kept it polite, but we both knew how much in the wrong she was.  I said, “I don’t mean to be rude, but I’m going to call my OB-gyn right now, before they go home for the day.  Because this is still potentially an emergency.”

And I literally took out my phone and called them right there, with her sitting in the exam room.

To be fair, although the doctor didn’t outright admit her mistake, she did apologize for “looking as though she wasn’t taking it seriously.”   She did nod her head in agreement as I told the person at the OB-gyn’s office that this was potentially an emergency.

But I will be switching primary care doctors now, because this was just too much for me.  A difference in philosophical outlook is one thing– but when it affects how my case is handled in a potential emergency situation, it’s time to move on.

End note:

After all this, I did end up speaking with the OB doctor who was on call that day– the same one who performed my surgery, actually– and she reassured me that there was nothing to worry about.  That it was just due to stress, and that I wasn’t in enough pain for it to sound concerning.  I ended up having an ultrasound anyway, in a non-emergency setting, and it turned out normal.  So, everything did turn out okay.

But I will still be switching, because enough is enough.  It’s taken me a long time, over the years, to believe in myself, and that I am worthy of respect.  Ten years ago, I don’t know that I would have been brave enough, or composed enough, to handle this situation the way I did.

So, like so many things to come out of that horrible weekend, at least everything turned out alright in the end, and now I can see it as a learning experience.   In a way, I suppose I am grateful for this, too.

Seeing things clearly, without that added layer of judgement on top

I struggled with what to say on my blog this week, but I finally landed upon this idea as the thing that resonated with me at the current moment.

Something I’ve been realizing, more and more every day, is how much time I’ve spent judging myself for the problems I’ve had.  Not actively trying to solve them… just judging.

On some level I didn’t trust myself.  After all all of my difficulties in getting diagnosed and treated… at some point, I developed the belief that whatever health issues I was having, no one would really be able to help me.  My issues would probably always be too complex for any one person to truly understand.

From there, it became a self-fulfilling prophecy that played out from one issue to another.  Compartment syndrome, central sensitization, sacroiliac joint dysfunction.   I didn’t really believe there were answers out there, so I didn’t try that hard to look.  I gave up before the fight was over (until things got so bad that I finally didn’t).

Now I realize that, just because other people doubted me, I didn’t have to doubt myself.  And maybe, just maybe, I didn’t have to wait for things to get so bad before I took action.

In a way, my issues are too complex for any one person to understand, other than me.   I did have to step up, do my own research, and keep track of so many things myself.  But now I see that that’s a reflection on our health care system, not on me.

Everyone is rushed; insurance companies don’t pay for long enough visits, let enough adequate treatments.  (I personally feel that most of these efforts to reduce costs on the front end ultimately end up driving up costs on the back end, as people develop more serious conditions that could have been monitored or treated before they became more serious.  But I digress).

There was never any real reason for me to lose faith in myself.  My problems were real, and they had real answers.  (And you know what?  Even if they were in my head, mental health concerns deserve to be addressed too).

It’s like that quote from Eleanor Roosevelt:

“No one can make you feel inferior without your consent.”

For so long I gave so much of my power away… why?

There are so many bigger things happening in the world.  Why am I wasting time judging myself and holding back, when I could actually be contributing to something larger than myself?

For anyone who’s been struggling to make sense of what’s been going on in the world, I stumbled upon another amazing quote today, that was just exactly what I needed:

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I love this, so much.  Do justly.  Love mercy,  Walk humbly.  Nowhere in there does it say “second-guess yourself for trying to heal and then do nothing.”

I’m done trying to see things through the lens of “perfect” or how things “should be.”  I want to see things clearly (both in terms of the way I see others, and myself).

Judging yourself is really just a waste of time.

I want to have compassion for others, and maybe, for the first time in my life, also for myself.  I guess right now I’m learning what that means.

***

This post isn’t supposed to be about just me (although it kind of seems like it, now that I read it over).  It’s actually supposed to be about getting “me” out of the way.  To stop getting caught up in a cycle where I judge myself instead of doing things, for myself or for others.

If you’re reading this, I hope you know what I mean, and that maybe this post was helpful to you, too.

An Update on Life with One Ovary

One of the topics readers most frequently contact me about is the time I had to have emergency surgery to remove my right ovary.

In case you aren’t familiar with the story, I had had abdominal pain throughout most of my twenties.  Doctors had told me it was nothing to worry about– just digestive issues.

Well, in February 2013– just a few days before my 28th birthday– the pain in my right side, and nausea, became so severe that I went to the emergency room.

There, an ultrasound revealed that I was suffering from ovarian torsion— something had caused my right ovary to rotate, with the Fallopian tube wrapped around it in such a way that its blood supply was being cut off.

The doctors rushed me in to surgery in an attempt to reverse this process and restore blood flow, but it was too late.  The ovary had to be removed.

For months, after this– I’d say a year, really– I suffered from both physical and emotional fall out.  And actually, a lot of what I experienced me is what my readers say they also go through.

I decided it’s high time I give everyone an update on this situation, and I’m here to tell you that, three years later, everything is alright.

***

Physical Symptoms:

I was in pretty significant pain for about two weeks following my surgery.  I really relied on narcotic painkillers.  They masked the pain so well that I’d think I was better and didn’t need them anymore.  Then my last dose would wear off and I’d feel like my world was coming to an end.  Other people (mainly my parents) would have to remind me that I was due for another Percoset, and then I’d come back into my rational mind again.  (By the way, I am a FIRM believer in the usefulness of opioid medications.  This entire ordeal would have been much more emotionally scarring if I’d had to bear the brunt of this mind-warping pain without them) .

After about two weeks I was okay… until my next period.

This is pretty graphic, but I figure if you’re here, you’re interested.  I went back to my OB doc in agony again, like I’d just had the surgery yesterday.  He explained that basically, now that I was menstruating, blood was coming out of  the side my uterus and leaking into my abdomen, because now I had a gap where the Fallopian tube used to be.  Basically, it was a totally benign phenomenon– my body would just reabsorb it– it was just causing pain because there was fluid where fluid wasn’t supposed to be.

At the time, my doctor told me it would be like this every time I got my period, and suggested I take the birth control pill to lighten my periods and ease the pain.  I did this for a few months, but eventually as time wore on, things stopped being painful.  Now I believe that my body just hadn’t fully healed from the surgery.  It’s also possible, as one nurse practitioner suggested, that my nervous system had become sensitized to pain in that area (gee, that sounds familiar!).

What I do know, for sure, is that three years later, I am having normal periods without agonizing pain.  I sometimes do notice that during my period, I’m a little sore on the right side, but it’s something I am pretty much able to ignore.

Mood/Emotions/How Do I Feel?

I feel totally and completely normal.  What all of the doctors told me is true– when you lose one ovary, the other one completely takes over.  You don’t really need two.  (In fact, there’s a reason why we have two).

My left ovary is a magical little powerhouse and it has taken over completely, doing everything I need it to do.  I feel the same.

Blame/Doubt

It took me a really, really long time to work through some of the emotions that came from this.

I am still mad at the doctors who so easily brushed my concerns aside.  To be fair, they were gastroenterologists, not ob-gyns.  But still.  One of them literally even wrote a book on digestive disorders in women.  (I don’t hate her enough to name her here– in fact, she is still my doctor because I think she’s a good gastroenterologist).

But still, on this, she did brush me aside and tell me it was irritable bowel syndrome.  Seeing that I am a woman of child-bearing age, I wish she had thought to tell me to consult an OB-GYN.

I also still think that the gluten-free craze is just a fad, and that it has power to do just as much harm as it does good.  (This doctor’s advice to me, the last time I saw her before this happened, was to try switching to a gluten-free diet to see if I felt better).

But I’m no longer mad at myself.  I did the best I could with the information I had at the time.

I try not to judge myself for the way I handle things.  There have been times I’ve under-reacted, and there have been times I’ve overreacted.  Nobody is perfect.  We do what we can.  Pragmatism is my goal.

Fear of it happening again

And this. This is really the number one thing women write to me about– the fear that the same thing will happen to your good ovary.

I can’t promise you that nothing will, but I can tell you that so far, nothing has happened to mine.  It is just fine.

They told me what happened to me was about as rare as getting hit by a bus, or being struck by lightning.  The odds are like one in a million.  The odds of it happening again? Almost minuscule.

Still, there have been a number of times that I’ve freaked out and rushed into the doctor’s office for an emergency same-day ultrasound.  (When you’ve already been that one in a million, it doesn’t really make you feel like taking chances).  But my ovary has never been twisted.

I’ll tell you the truth, in the past three years, I think I’ve had six of these.  I know that’s a lot.  But I know that it won’t seem like a lot to any of the women who’ve emailed me.

The majority of the times, the doctors were able to decipher what had happened to cause me pain.  That I had ovulated, or was about to ovulate (normal ovulation causes the formation of a little cyst, which then releases the egg).

Some of these cysts, they said, wouldn’t be enough to cause pain in every woman, but for whatever reason, in me– probably now that I’m hyper-focused to that area– I notice it.

And there were a few times I was really scared, when it hurt a lot.  But I learned that, in some women, normal ovulation can be really painful– even more painful than what I was reporting.  So I would just have to trust in the ultrasound, when it showed my ovary just doing its same normal healthy thing.

So, that is where I’m at right now.

I still hope to have kids someday, and as far as I know, there is no real reason why I won’t be able to.

Now that I write this, I can’t believe how sane and calm I sound.

Believe me, it wasn’t always this way.  I was the same as those of you who end up sending me ten panicked emails (it’s okay, I say this affectionately).  Really, I was.   But I had no one to email.  And now, for me, things are okay.  And there is every reason to think that, eventually, they will be for you too.

My two previous posts on my surgery:

So… I lost an ovary

Beware the Red Herring (follow-up post)

Powerful female hormones, injuries, and pain

Something I’ve really come to notice during my time with SI joint issues is the effect of my hormonal cycle on my ligaments.

I saw a female pain specialist once who put it very plainly:

I have extremely healthy women come into my office– women who are runners, women who are training for marathons– and sometimes it seems like, during their period, all they have to do is bend over and tie their shoe, and they can throw their back out.

Why does this happen?

Basically, one of the hormones a woman’s body releases in the days leading up to her period is a hormone called relaxin.

As the names suggests, relaxin acts as a chemical messenger that tells our muscles and ligaments to relax.  Its main effect during childbirth is to cause the joints of the pelvis to become looser, meaning there is more room for the baby to pass through.

However, relaxin is also released during our menstrual cycle, beginning around day 14, so our bodies are prepared in the event that we do become pregnant.

And with more relaxin circulating in our bodies, our muscles and especially our ligaments are going to be a little more slack, meaning there is more risk for injury.

This article from BBC News outlines a few studies that have shown women are more likely to experience injuries in the second half of their menstrual cycles, due to higher relaxin concentrations.

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I have definitely noticed this going on in my own body.  For me, it begins 3-4 days before I get my period, right when I get my other PMS symptoms.  All of a sudden, I’ll feel my SI joints start to move around a lot, because my ligaments are not holding them in place as tightly.

There were times when I’d have to promise myself, in those days leading up to and during my period, that I wouldn’t judge my overall progress by the way things were at that moment in time.  (I’m sure my plummeting mood didn’t help with my gloomy outlook, either).

I’d really have to talk myself through, and say, I know things really seem that bad right now, but your joints ARE doing better.  Just wait a few days and see.

And then, sure thing, once my period had passed, things would go back to normal (or at least, back to baseline anyway).

***

Since my SI joints are doing better now, I don’t notice quite the same extreme fluctuations in my level of function.  I have more muscle strength to hold things in place, and my ligaments have had more of chance to heal after my original injury.

However, every month, I can still feel things become a little looser, and my SI joints seem to have a wider range of motion (and not in a good way).

I also notice my hormonal fluctuations impacting other joints in my body as well.  I particularly notice it in my knees and in the joints of my fingers.  (That sounds totally random, but interestingly enough, finger joints were one of the joints that doctors studied, according to that BBC News article).

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So, for my female readers, this is something to be aware of.

If you are struggling with chronic pain, it might be worthwhile for you to track how your menstrual cycle impacts your pain.

I honestly was totally unaware of the connection, until that doctor suggested I start paying attention.

Once I knew, it did make things a little easier.  I learned not to freak out if things felt worse during a certain time of month, and instead knew to wait, and that it would probably pass (which it did every time).

**

For more, check out this really informative article from Lindsay Matthews at Breaking Muscle on Relaxin: Facts Female Athletes Need to Know.

The BBC News article

I also just started using the Clue period tracker app.  It seems pretty easy to use so far.

Beware the Red Herring

One of the reasons I sometimes take a critical tone towards alternative medicine on my blog is not always that I think these approaches have no merit.  But I do think that, too often, people are drawn to and waste their time treatments that are simply “fads.”

When I look back on everything that led up to my losing an ovary, I can’t help but feel my digestive problems are to blame.  I wasn’t sure I wanted to talk about my digestive issues on this blog, but what the heck.  I have issues with IBS and chronic constipation, made worse by the fact that I have a pelvic floor disorder.

I am so used to feeling discomfort in my abdomen that I didn’t rush to the hospital the moment things began to hurt.  In retrospect, that was critical time in which my ovary was being deprived of blood supply, and although the doctors and nurses I talked to didn’t want to come right out and say it, there is a chance I could have kept my ovary had I gone to the hospital sooner.

When I look back, I can see that some of the symptoms I associated with my twisted ovary were actually building for months.  I had this weird feeling in my right side, a feeling that something was where it shouldn’t be, for almost a year.

It’s so infuriating to realize this, because I talked to two gastroenterologists about the feeling that something new was wrong on my right side, that somehow things were getting worse.  I told my most recent doctor– who actually published a book on digestive issues in women– that I felt as though the right side of my abdomen always seemed to be a bit swollen (for lack of a better word). That my right side was always aching a little bit, that it was simply bigger than my left side.

This doctor basically told me not to try too hard to diagnose myself; that I shouldn’t go by how things felt from the outside.  I tried to explain that I wasn’t, but our appointment time was over and she had mentally checked out.

I am so frustrated now, because I wish she could have pointed just out that ovarian cysts can have many of the same symptoms of IBS.  Perhaps she could have said something like “Gee, I have no idea why that area is bothering you, perhaps you should try seeing someone in a different specialty.”

*****

I also wish I’d tried harder to get an answer.  It’s funny because, a few days before the pain really started up in earnest, I knew things were getting worse.  I didn’t have the horrible pain in my right side yet, but the feeling that something was there, that something was stuck, was really getting on my nerves more than usual.  I remember saying to my mom “I have to deal with this problem.  I can’t keep taking no for an answer.  I have to find a new gastroenterologist.”

Almost a year had gone by since I had seen a new doctor.  The last time I saw my doctor, which was almost a year ago now, she had offered to put me on Amitiza, a medication for chronic constipation.  I was reluctant to start a medication without exhausting every other possible option, so we decided that I would try going gluten-free first to see if it helped.

My doctor had said that sometimes it can take a long time for the gluten free diet to help.  She also said that it won’t necessarily work to just reduce gluten; you might have to eliminate it completely to really see an improvement.  So I spent the past year waiting to see if this would help.  At some point over the course of that year, my right ovary began to twist, and I did not aggressively pursue answers for the new pain I was feeling.

*****

Now, I am sure that a gluten-free diet has helped many people.  But at the same time, gluten-free diets for non-celiac sufferers is not something that has actually been proven to have any scientific merit (as far as I’m aware).

I think it was a mistake for me to have endured so much discomfort, for so long, waiting for something with so little evidence to help me.

When I look back over the years, I can actually see how sometimes, being stoic and just enduring the pain and discomfort has not served me well.  I’m sure certain family members of mine will get a good laugh out of this statement, but I wish I had complained more, not less.

Being stoic is not always good.  And neither is being too open to new ideas.  I had a very real, very diagnosable problem in my abdomen.  But I was content with no answers, for too long, because I was waiting to see if something that is basically a fad was going to help me.

Of course, I don’t mean this in any way to be a criticism of those who are on gluten-free diets.  If it helps you, that’s great.  I might even try it again in the future if my digestive symptoms don’t improve.

But it’s about proportionality.  When I look back, it just doesn’t seem logical; the idea that I could fix extreme discomfort by no longer eating something I had eaten comfortably for most of my life.  I can see why my doctor would have recommended a gluten-free diet for a more subtle condition.  A subtle treatment for a subtle condition.

But there was no proportionality between the persistent, nagging feeling that something was stuck in my abdomen, which bothered me day in and day out, that kept me awake when I tried to fall asleep at night… and gluten.  If gluten-free diets could clear up this kind of discomfort, I’m pretty sure they would be in medical textbooks by now.

So, these were my mistakes.  The first: a lack of proportionality.

The second: being too stoic.  I waited far too long for something with very little scientific credibility to help me, instead of insisting that a doctor understand exactly how miserable I am.

Let’s not be strong all the time, people.  Sometimes, it’s really important to just let yourself complain.