Unacceptable

 I remember so clearly the first time it happened. 

Fair warning: this post will focus heavily on menstruation, so if you are squeamish you might want to go on now. No shame in it; our society is very clear on the idea that this is not a subject we are to be open about. It may get graphic at times. But if in telling my story, I can prevent even one menstruating individual from going through this or feeling alone in it? Then overshare I will. Don’t say I didn’t warn you.  

Back to it then. It was after I had Emerald. May have been about five months after the birth, early spring. I woke up in so much pain I couldn’t stand, couldn’t get out of bed. I called Michael at work, who sent my father-in-law Ken to watch Emerald while he took me to the campus doctor. At the time, I was still a student at Lubbock Christian. Michael had to partially carry me up to the second floor clinic; once in there, I sat on the floor and vomited into the trashcan in the room because the pain was so intense. 

The doctor did an exam and sent me to have an ultrasound at a place the school had a discount deal situation worked out with. Even so, we had to pay $300 that day out of pocket before they would see me. This amount of money would have been nearly an entire paycheck that Michael received from the school as a computer teacher, and half of our monthly income. But it was the only way we could be seen, and I had no insurance. 

That afternoon the clinic doctor called me and told me there were follicles on my ovary, indicating that I was going to start my period soon. He said that as though it was an answer. 

He then recommended I try some ibuprofen. 

And hung up. 

Since my period had started when I was 13 years old, in eighth grade and the very last time I ever wore jean overall shorts, it had been two things: very light, and very predictable. Two and a half days, mild symptoms, every 28 days like clockwork. Looking at Amber who was so different and basically incapacitated by hers, I felt lucky--I figured it was due to the same hormones that gave her curves and left me a two-by-four. It wasn’t something I really talked to my mom about; I think I would have rather curled up and died than hear her discuss it. Nurse Haney gave us The Talk in fifth grade and I lived in fear of it ever after until it occurred, then it was mundane but still humiliating. 

It was completely unobtrusive and inoffensive, until I had my first c-section. And then it was a nightmare. Bleeding so heavy that I would leak out on people’s furniture; I had to sit at home because I had to be very close to a bathroom at all times. A plethora of unexpected and intolerable symptoms for half the month or more. And the pain…oh, the pain took me out of the fight. 

This absolutely unacceptable situation persisted irregularly over the course of the last fifteen years. 

Not long after that disaster day at the doctor, I got pregnant with Gabriel so was thus granted a reprieve from the painful periods. The easiest of all four pregnancies physically, I actually appreciated the break. Maybe the pregnancy and birth of Emerald messed things up in there and a second baby would set me back on my normal track. 

It did not. The bleeding became uncontrollably heavy. I remember Michael dropping me off at Walmart to get groceries; he hadn’t even made it back to the house when I was calling him to come back and get me--an unexpected gushing start had left me standing in a puddle of my own blood in the bathroom. 

The problems were varied. Sometimes I would start and go for weeks and weeks until I had to go to urgent care and get examined for a miscarriage; when they realized it was anovulation, they would give me a huge hormonal shot that force stopped the period; the shot made me violently ill, so I would lay in the backyard vomiting and crawing away from it all day until Michael would come carry me in for bed that night.

Other times I would pass clots so big it physically hurt moving through me. Each time I would count back to my last period and wonder if this was a failed pregnancy, but it was so sporadic and unpredictable that I had no idea. There was no rhyme or reason, nothing that I could pinpoint or track. I’d have to go to my obgyn and they would scan me for free because I was this sad, broken poor woman they felt for, I guess. They would never give me a name for this misery, never indicate that this was even potentially out of the ordinary. They would reassure me that it was “normal” and suggest the two standard options: either go on birth control, or get pregnant. The only other thing to be done was management; had I tried a hot water bottle, or perhaps an ibuprofen?

So I tried all the birth controls. Pills that gave me blinding migraines and with which I threw up every day. Implants that caused volatile mood swings, depression, and significant weight gain. They said I was a poor candidate for the IUD, as I had never gone into labor and was “so thin”--they said it would be very painful to put in and I would likely feel it constantly. (Somehow my thinner sister-in-law could manage it, but maybe that’s because she didn’t have c-sections like I did). 

After Ben, we tried the Nuva Ring. The office would give it to me free once a month, I just had to go and pick it up. They were insistent after the last birth that I not get pregnant again for quite some time, maybe ever, as my uterus had torn open like wet tissue paper when they tried to deliver the infant. So I went and got the rings and used those, 27 days in, three days out for period, put a new one in. 

This gave me some sense of predictability, but the pain increased. It was particularly bad about halfway through the month. I mentioned this to the doctor, who did a scan and found that I was having cysts in my ovaries, alternating sides based on ovulation. One had grown rather large; he thought it would need to be removed through surgery, but he wanted to give it one month on a progestin only birth control pill to see if we could diminish it. 

Over the course of the month, the pain transformed from acute to a deep chronic variety. It was, to this day, the worst pain I can recall enduring (and that’s including the c-sections I wouldn’t take pain pills for after). I became so weak, I remember struggling to lift a folding chair. The fatigue was debilitating, and I spent most days on the floor letting the kids play around me. 

The scan when I went back in revealed that the cyst had indeed gone away, to be replaced by a large mass blocking the entry of my cervix and holding it open. This visit was an interlude while Emerald was in the hospital with DKA; they scheduled me the next morning for a d&c to remove the mass and get me back on my feet, but the doctor said it was likely a stop gap until I could get a hysterectomy. 

My mom drove me the next morning. I remember waking up after and being sore, but feeling so…empty, in the most beautiful way. It was remarkable how much better I felt so quickly. The doctor told mom he had removed as much material as he would have in a miscarriage. 

During this whole time, no one mentioned a diagnosis. They just acted like this was just how things sometimes went. 

After that, we moved to Abilene and on a whim I tried the whole vegetarian thing. I wanted to see if it would help my migraines; not only did my chronic migraine condition go away, but my period problems became more and more manageable. I stopped having (among other things) painful urination and sore bladder, debilitating cramps, nausea and vomiting, lower back pain, and diarrhea. The first day of my period was still so heavy that I had to plan on sitting for most of it, taking that recommended ibuprofen to stem the tide every four hours, but it got back into that predictable routine without hormonal birth control interventions. It felt like I was improving. 

There isn’t always a rhyme or reason for what I do, except that I trust my instincts. When I started turning away from alcohol consumption, I figured it was maturing and became a very light social drinker at best (on most occasions; there were still some choices made in Tulsa). Cutting the caffeine helped with the restless leg, so I didn’t even feel bad about that one leaving. Doing yoga and running felt good so I picked up the hobby.

I had no idea that I was subconsciously treating myself for a condition they had only just named: endometriosis. 

The rates of this condition are higher after c-sections, though no one had ever broached the topic as a possibility. I was dismissed, treated as though I was exaggerating or dramatic. That this was all perfectly normal, acceptable period symptoms that millions of uterus-bearers endure each month all around the world and throughout time. 

So why was I struggling so much with it?

The lifestyle changes gave me relief, but they weren’t a cure. The issue was still there, and it had been getting progressively worse over time. When I was subbing, I knew I couldn’t work the days around the first day because sciatic pain would get so bad I had trouble standing and walking, even with dedicated stretches.  The nausea was back with significant food aversions; I was barely eating. My hips ached so much that my runs slowed down into walks until it became just waddles around the neighborhood with my elderly dog. 

The last few months, it’s been to the point of distraction. For two weeks before, my hips had me curled in on myself. It hurt to pee, and I had bowel issues. I knew that first day would be hell but if I could get through it, I’d feel better. It felt like someone had kicked me right between the legs, and I was sore all the time.

I told you it would be overshare. But there is a reason for that. So that I can tell you if no one else has:

It’s not supposed to be like that. 

It’s unacceptable. And you shouldn’t have to accept it. 

I sure as hell will not accept it any more.

A couple weeks ago, I called my obgyn and said I needed to be seen as soon as possible. They got me in later that week, and I had a frank discussion with the nurse practitioner. I told her I wouldn’t live like this. She talked over treatment options, and we got a game plan in place: we were going to run tests, including an endometrial biopsy, blood work, Pap smear, and an ultrasound so we can gather the information needed to make the best possible treatment plan. Surgery is highest on the list, either to remove the adhesions and foreign tissue (which runs the risk of forming more adhesions) or performing a hysterectomy and oophorectomy. This will permanently solve the issue. Less permanent solutions are birth control and hormonal therapies, but my faith in those are very low. I’m tired of feeling this way, of having this condition control my life.

The biopsy I was nervous about. They said it could be very painful and traumatic. It is not performed under anesthesia or with pain management; I was once again suggested ibuprofen. Apparently it has been a wonder drug in front of us the whole time. They also prescribed me two Xanax so hopefully it would ease my anxieties and I wouldn’t remember the procedure. 

I had it done this morning.

Amber drove me there and back; it only took about 15 minutes, but I’ve been sore and sleeping off the meds all day. It was sent to a specialty pathologist in the metroplex for analysis, so I should get the results within the week. I will let you know what next steps are. 

Until then, I will continue to be hopeful.

—Andie 

(As a moment of levity, here is what Amber said I was like on Xanax: