Sunday, October 13, 2019

Working hypothesis

I have a hypothesis that's been brewing for the past decade. Something that began to form while in the trenches of fertility treatments and I've been slowly probing for with each new physician appointment for establishing care or following a period of illness. For years, this hypothesis has been percolating in the mind, surfacing in moments for tweaking and adding supporting facts, but recent changes with my new position and combined health issues have brought it screaming to the forefront. Meaning it's time to share.

A few months ago, I came into possession of a new book by Matt Richtel titled "An Elegant Defense." For anyone that is science inclined but finds the jargon overwhelming, Mr. Richtel does a nice job of breaking down the history behind understanding the immune system and the role it plays in keeping us healthy. But the part that had me stopping to think were the stories of the patients Mr. Richtel interviewed, particularly the ones about two women who have autoimmune disorders, laying out the case for who their own bodies defenses were betraying them. And as I read their stories and all they had experienced, I couldn't help but notice the parallels for all I've been living with.

I'm currently in the middle of the worst hemorrhoid flare I've ever experienced. Hemorrhoids aren't a new thing for me, but 3 years ago mine were exacerbated to the level that surgery was first something my medical professionals were willing to consider. Despite this, due to continual warnings about how painful this surgery was, I didn't pursue surgery and have been in maintenance mode, using common techniques in order to get through flares. The problem is, my hemorrhoids don't behave the way most medical professionals commonly encounter, being triggered by changes in hormones (read they tend to crop up around my period) and me having extreme cases following a period of bodily stress or extreme illness. In short, I think they are immune-related, which hasn't been well received.

Last Monday, I hit the wall with pain and after vomiting due to how extreme it was, I made an appointment to see someone at my PCPs office. Unable to sit for any period of time, I decided I was done sugar-coating my concerns and made it clear to the nurse practitioner that I wasn't leaving without a referral to a gastroenterologist and some seriously strong meds.

At the end of the appointment, despite being visibly horrified from the examination at the state my body was in, she began to warn me about how painful hemorrhoidectomy is. And that's when I looked her in the eyes and told her about all the research that showed medical professionals routinely downgraded women's health due to not believing their patients about symptoms and pain levels. I told her how disappointed I was that my pain was continually being downgraded, leaving me frustrated that I had to fight in order to be taken seriously. As this NP's face turned bright-red, it was clear that this was not something she had ever considered, leaving her to stop fighting and instead upgrade my referral to urgent.

So what does all of this have to do with my hypothesis? Well, I've long believed that the underlying cause for my infertility is an autoimmune condition. One that medicine is unable to diagnose because we currently have not advanced to the point that it is detectable. And this is fueled by a growing belief that many in this community have undiagnosed immune issues. There is growing evidence that endometriosis is linked with immunity and that there's also a connection with PCOS and I've long suspected that premature menopause and diminished ovarian reserve also have an immune link.

What all of this has to do with me now is I believe that I have irritable bowel syndrome and that it's gone undiagnosed for a number of years. I'm not expecting a silver bullet with this, especially given that all test results tend to come back normal. But fueled with new knowledge about the immune system (I'm not an immunologist, so this has taken a bit) as well as some patient case studies, I now have sufficient information to make a case with the GI I'll be seeing this next week.

Because my hypothesis is that my infertility and my current flare aren't separate issues, but instead part of the same issue that has long been undetected, all pointing to issues with my immune system. And I firmly believe that many who receive an infertility diagnosis are facing the same systemic problem.


  1. Good for you, speaking up to the NP and advocating for yourself armed with research. I am work you -- I don't have the super science-y background or skills, but I always thought there was an autoimmune piece to my infertility. I also am so frustrated at how wouldn't health concerns are so often dismissed or minimized. I had an OBGYN even I was a young adult that told me, "some women just have pain." In what universe is that okay to say? Or to surrender like that? I hope you get relief from your awful hemorrhoid flares, and I hope you continue to pave a pathway for women who come after you and seek help but are dismissed. You are such a self advocacy warrior!

  2. I think your hypothesis sounds well thought-out and makes a whole lot of sense to me. Things ARE connected, more so that our reductionist way of thinking sometimes leads us to believe (and we miss out when thinking this way).

    I'm sorry you've been living in such pain. Maybe now you can treat the underlying inflammation that has flared up in various ways over the years. Proud of you for speaking up with the NP.

  3. I've only ever had mild hemorrhoids & that was bad enough... kudos to you for standing your ground & insisting on being heard. I am intrigued by your theory about the immune system & infertility, & I would love to hear more as you explore this idea!

  4. Oh wow. One of the biggest, most agonizing issues I've had after deliveries and my TAC were hemorrhoids. Combined with everything else they left me in can't-stop-shaking pain for days and took at least 6 weeks to heal. Just like you I was dismissed. In my case I was told that they shouldn't take so long to heal, as if I somehow was lying about what was going on.

    I feel you on the immune hypothesis. I also dealt with ulcers that were clearly immune in nature, but never found a provider willing to do anything other than 'wait and see.' If you get more solid insights into immune function and these issues, I'd love to know what you learn.


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