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.


4 thoughts on “Beware the Red Herring

  1. I think they have been trying here to raise the profile of all things ovarian – I recall seeing things stressing that if you have a change in periods, same as if you have a change in the usual bowel habits, you should get it checked. But certainly in Britain we’re not great at taking on these health messages…I’m quite risk averse and I *still* forget to check my breasts etc.

  2. …and perhaps not be toooo trusting. I felt uneasy for a long time about my symptoms, but like you, they were clouded (for me and GPs) by multiple factors, and I was so busy, and I trusted my GP. When I moved house and registered at a new surgery, I was hesitant to even mention my worries as I’d been told so firmly there was nothing serious wrong. But as soon as I did, the practice nurse took it super-seriously and insisted I made an appointment with a GP, and only a week later I was in hospital having emergency surgery. It wouldn’t have prevented the tumour to know earlier, but it would have avoided the shock of & lengthy recovery from major abdominal emergency. What have I learned? That certainly I, personally, should give myself more time to noice and give credit to feelings of deep unease if I have them, and get a second opinion if they are brushed away by someone, even if it’s a health professional I like and trust.

    1. Interesting that you had a similar experience to me, in terms of it being hard to get a diagnosis.

      It seems to be a common theme: another blogger told me her daughter was in the emergency room for three days suffering from a torsed ovary, and the staff couldn’t figure out what was wrong. After three days they moved her to another hospital where she got a diagnosis right away. (Despite my frustration with the doctors I saw in the months before, I am so grateful for the care I received once I was at the emergency room. They had me in surgery within an hour!)

      I really believe that ovarian cysts/tumors ought to be something that every woman is warned about, like breast cancer. None of my friends had even heard of ovarian cysts/ovarian torsion. It is something that should be common knowledge.

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