well, this post is happening.

Happy one month until autumn! Here’s hoping I lock down a steady job soon so I can afford rent insurance my student loans an unnecessary amount of sweaters!

I’ve been reluctant to talk about what has become a major part of my quest for pain relief because I’ve been worried about crossing the line between honest, personal writing into TMI territory. I worry about making my many, many readers uncomfortable. The sacrifice is…I’m not making any progress, and I’m not initiating any conversations that might help someone else make progress. No one benefits.

With this in mind, today I’m going to do the uncomfortable thing and finally talk about…birth control! Annnd…PERIODS! Did I just lose all the men?

There’s a question I love to get when I’m having myself a good ol’ ER visit for my mystery flank pain or any other symptoms. “When was your last period?”

I admitted to a male ER doctor on one somewhat recent visit that it was currently happening, and that right there ended our conversation. He told me that some women experience much more severe cramping than others, even in unexpected areas of the body. The only reason I had gone to the ER at all was that I was experiencing similar symptoms to the stroke-code day, and had been told that I should absolutely go to the ER if those symptoms ever came back.

Some background info for ya: I switched from a hormonal birth control pill to a copper (non-hormonal) IUD a little over a year ago, hoping that my anxiety and depression would calm down. I had a feeling the two were related. Luckily, they did get much better after the switch. Things aren’t perfect, but mentally I feel a thousand times better than before.

With this swap came a sacrifice. I never had a difficult period while on the pill, but things took a 180 with the IUD. I expected everything to level out after a few months, but this did not happen. Now I have a few days a month where I can’t really leave the house. For the most part, I think it’s worth it to feel like myself again.

I’ve kept a log of my pain and symptoms for years (without much consistency), but only at the start of 2019 did I start tracking those symptoms in correlation with that time of the month. I don’t know how surprised I should be, but there is a bit of a pattern. My left side pain, lightheadedness, fatigue, and even UTI symptoms that have been present for years and years tend to act up during and before the uterus party kicks off. To note: I experience instances of left sided flank pain (typically right along the bottom of my ribcage) at random points in the month, too. But…my symptoms also consistently get worse at the same time each month.

What does it mean?

I don’t know. I tried to talk to my OBGYN about it at my last appointment, which I believe I wrote about in minimal detail. Specifically, I wanted to learn about ureteral endometriosis from an expert and not just the internet. As it turned out, I don’t believe my OBGYN knew much about ureteral endometriosis at all. He insisted on performing an “examination” and told me that because the area wasn’t tender to the touch, I probably didn’t have it. I tried so, so politely to ask if my ureter would be the tender area rather than where he had examined, reminding him that I wasn’t talking about your usual endometriosis, and his response was more or less a hesitant “nah”. Anyway, that was about my 10th bad experience at that office so I’m pretty done with them.

You know what’s crazy though?

Just in my very light research that I’ve done on possible conditions that are related to the menstrual cycle and/or all of those crazy organs down there, I’ve come across SO MANY conditions that I’ve never heard of.

SO. MANY. Not that they all have anything to do with my symptoms, but oh my gosh there are so many different potential problems that women can experience.

Thoratic endometriosis? Interstitial cystitis? Mittelschmerz?

Also, the amount of women/menstruators asking each other questions via online forums is equally great to see, and terrifying. How did we become so reliant on turning to each other for answers when we’re all meant to see doctors who are trained specifically in these areas? I know full well that there are tons of incredible and dedicated OBGYNs out there, but at the same time…the situation proves that we’re a long way from where we need to be.

Health education is a big part of this, as well. I remember the first time I was diagnosed with a UTI, before we knew it was a chronic/mimicry situation, and thinking “why did I not learn in health class that girls should use the bathroom after sex?” Seems like some basic preventative information, no? Simple things! Not to mention, I didn’t even know there was such thing as a non-hormonal IUD. The way I felt all of those years could’ve been avoided. Who knows what a difference that might’ve made?

I know I’m one of those people. I talk a lot and get fired up about things, but I haven’t done much to enact any change. I knew when I made this blog public that I was far from having my goals figured out. Y’know, big picture goals. Still, as I say all the damn time, we all have to start somewhere. In the meantime, I have a collection of posts where I rant about things for me to look back on when I feel like I don’t know what I’m doing…so there’s that.

I’m going to lay on the floor now with ice on my ribs and continue to try to control my hormonal acne with a very uncomfortable bee venom serum. Yes, it stings. Yes, like a bee sting.

I’m leaving you with a recommendation of someone to pay attention to: Nadya Okamoto

Okamoto is a Harvard college student who founded PERIOD, the menstrual movement – “a global, youth-powered non-profit that is fighting to end period poverty and period stigma.” (I took that directly from her organization’s Instagram, @periodmovement.) I love what she’s doing. If you’re a college student, you can start or be a part of a PERIOD chapter on your campus. I’m still working on figuring out what I can do for her cause as a non-college student with no money – but I’m sure there’s something. Oh, Okamoto also wrote and published a book. Pfft. No big deal. Bet she doesn’t know how to mime.

Alright, it’s floor time.

(…watch out for Séan’s foot)

but are you SURE it’s not a piece of glitter?

This feeling that I’ve had all week is familiar, but I don’t have a name for it.

Disappointment is close, but isn’t quite right. Perhaps a form of disappointment that’s under the umbrella of simply “tired” with a splash of “whatever” to it.

I’m on a break, basically. I have to pause for a little bit.

I know this must sound wildly unhealthy but I assure you, this is something I need to do to preserve what’s left of my sanity. I had my two appointments, one with a nephrologist and one with my gynecologist. They were…not exactly motivating.

The nephrologist had some theories but wants me to see a vascular specialist before trying anything himself. He wasn’t opposed to my theory, which I’ve been withholding from you because I’m probably wrong and I hate being wrong, but will now share: ureteral endometriosis. Basically, endometriosis, but the affected area is your ureter as well as your cervix and all of that angry & misplaced tissue can send your kidney into hydronephrosis. It can also cause recurrent UTIs. A very informative (and science heavy) article about this peculiar variety of endometriosis can be found here.

As per the nephrologist’s suggestion, I brought up ureteral endometriosis (UE for writing’s sake) at my gynecologist appointment several days later. My gynecologist’s office makes me very nervous, by the way. Not for the reasons you’d think. I want to give my OBGYN the benefit of the doubt that she’s actually lovely and she just uses up her patience in her other appointments, because I always feel like I’m bothering her by having any inconvenient problems or questions. Before even bringing up the UE, I asked about something else which led to her asking “could it be [blank] ? are you sure it isn’t [blank]?” Without getting into major T.M.I. territory – these were really, really obvious questions. Imagine going to a dermatologist for a weird mole you’ve been keeping an eye on for a few months and having the dermatologist ask “are you sure it’s not a piece of glitter? …and it’s not a dot you drew on yourself by accident with marker?”

Eventually I got around to bringing up UE, simply explaining that quite a few of the symptoms were in line with what I’ve been experiencing. She hadn’t heard of endometriosis of the ureter before…which, I swear to God, was fine with me. Was I a little surprised? Alright, yes, a little…but it is a rare condition and not even a doctor can know about every condition in their realm of study. Right? It’s fine? It’s fine.

I was ready to move past that, but damn if she didn’t start right in with “well I don’t know if they’ll want to just do surgery for that,” after I had not brought up any interest in surgery whatsoever. I ended up backpedaling: “oh no, no, that’s alright, I’m really just looking to talk to someone about it.” Meanwhile, the look she’s giving me is making it very clear that she will not be the one who has this discussion with me. I’m told to set up an appointment for the end of next month with a different doctor in the same office. The “surgeon,” I guess. The best part of this whole visit was the receptionist asking why I was setting up an appointment to see the surgeon as I was signing out. When I told her, she said…I kid you not…

“Oh…I don’t know if Dr. [Surgeon Guy] deals with that. That sounds like urology. Have you thought about seeing a urologist?”

…ma’am.

Anyway, I saw myself out and went across the street to CVS to look at Valentine’s Day cards, where I ended up quietly raging/soft crying while wandering the entire store for 45 minutes. Sometimes you need to allow yourself that quiet rage moment, let a few tears out, and heck, buy a face mask if this is all happening in a CVS. Side note: I bought one face mask and walked out with probably $50 in coupons. Incredible.

So. I’m taking a little break. Not from the blog, but from the pursuit. I’m going to continue my cleanse of all alcohol, keep track of any pain flares, and take things one day at a time. I’m keeping my two February appointments with these two new doctors, but I’m keeping my expectations at the lowest of lows. It all sounds so pessimistic, doesn’t it? I’m actually happy, believe it or not. The year is just beginning and there’s so much I want to do.

Also, I’m perfectly content with not being a comment-heavy blog, but if anyone ever has questions or anything you’d like to share, please feel free! Or, if you’d like to suggest a topic for a future post (& I do plan on writing about last year’s wacky hospitalization, misdiagnosis and $48,000 hospital bill very soon) I’m open to that, as well.

Enjoy your three-day weekend if you have one!