My doctor suspects that I have endometriosis. It took about six months of appointments to get to this point, far less than the 10+ years it takes many women get a diagnosis, but it was enough time to have to deal with a nurse practitioner that wouldn’t listen to me and a round of birth control that turned me into an emotional train wreck.
The pain started last summer. My periods have always been fairly regular, with some being worse than others in terms of pain and bleeding. That was my normal. Then out of nowhere they were unbearable. They were bad enough that I had to go home from work because it was too painful to sit at my desk. Walking was painful. Laying down the wrong way was painful. Using the bathroom was painful. Over the counter pain meds did absolutely nothing. Each month the pain got worse until I started having cramps and pain in between my periods as well.
The nurse practitioner I was seeing wanted to prescribe birth control, which I did not want AT ALL. The last hormonal birth control I was on, the depo shot, turned my into a raging lunatic. I was working in retail at the time and yelling at customers without realizing what an asshole I was being. I don’t know how I didn’t get fired.
But the FNP insisted that this stuff (generic Seasonique) was different and wouldn’t mess me up that way. I burst into tears right there because it felt like she wasn’t really listening to me. Then, without any explanation as to why it would help, she suggested endometrial ablation. I was so upset in the moment I couldn’t think of any questions to ask and decided to try the birth control just to prove her wrong. Yeah, it sounds stupid, but it seemed like the only way to get her to pay attention.
All the questions I wanted to ask started flooding in the on the drive home. I could have called the doctor’s office, but the last time I did I got a “suck it up and deal with it” type of response. So I Googled the hell out of all of my questions and started the birth control.
Side effects showed up within the first week. It was mostly uncontrollably crying over nothing or flying off the handle about minor things, and it steadily got worse until I couldn’t stand being around people any more. I was afraid to be around my own son because I would end up yelling at him over little things. Eventually it got to the point that my boss told me to take time time off if I needed it. I started working from home a couple days a week so I wouldn’t do something stupid at work.
To make matters worse, my pain got worse on the birth control. It was nearly every day and excruciating during my period. I was exhausted all the time and had horrible headaches. After six weeks, I stopped taking the pill. Within a week I felt better, but it was another six weeks until my follow-up appointment.
That next appointment was the turning point. I told the FNP how awful it was being on the pill and she acted very surprised. She then asked my about my symptoms and acted surprised all over again as I told everything that I had already told her during our very first appointment. I don’t what she put in my chart on that first day – she might as well have not put anything – because she was acting like I’d never told her any of it before.
I’ll never forget the moment when the light bulb went off. She looked up at me and said, “Have you ever been diagnosed with endometriosis?” Of course not, but I politely replied “No” since I knew where this was going. Then she said, “I’m going to go talk to the doctor for a minute. I’ll be right back”. A couple of minutes later she was back with a referral to the doctor and was pretty quick to get me out the door. I’m totally ok with sounding like a jerk when I say that it was really satisfying to see her have that lightbulb moment. (I know that birth control it the first step in cases like these, but those of us that can’t tolerate hormones know our bodies and it’s super important to have a doctor that will take those concerns seriously.)
It was another few weeks before I got in to see the doctor. We went over all of my symptoms again. I explained the terrible birth control experience. Within a few minutes we were talking about a diagnostic laparoscopy to look for endometriosis. He said the office would coordinate with the hospital and call me with a date. I also asked if I could get my tubes tied while they were in there and he was fine with that.
It’s been about three weeks since that appointment. The didn’t tell me (and I didn’t think to ask) how soon I should expect a call with a date, so I waited until after the holidays to call and ask. The receptionist said that it never happens that quickly and they were still waiting for their coordinator and insurance and blah, blah, blah… So no real solid answer. Just a lot of time to think and Google things and hope whatever date I get doesn’t conflict with work or vacation or whatever else might be going on.
All that thinking and Googling is a double-edged sword. Doc says you’re back to normal in a few days after a laparoscopy. Horror stories on the internet abound that say otherwise. People are also more likely to talk about a bad experience than a good one. Not to mention the fact that no two experiences will be alike and there’s no way to know what they find or won’t until the day. The remedy for all this should be to stop Googling, wait, be patient, and call the office every once in a while to remind them that I’m here and I want my surgery date.
Those first two things are next to impossible for me. I’m a horribly impatient person! I’m on the internet all day! What to do? I stopped looking for information on the procedure, possible complications, and recovery times. I’m as educated on that as I’m going to get without having gone through it yet.
Instead, when I feel like I need to read something about it, I look for the experiences of other women. It doesn’t matter if it was good, bad, or in between – there’s something comforting about reading someone else’s story. It gives you more than those “what to expect” checklist-type medical articles. It’s an intimate account of a woman’s journey toward getting better. It means you aren’t alone and that your pain is real. It also made me want to share my experience because the more we can talk about it, the more attention we can bring to women’s health and how our healthcare system often fails us.
Hopefully my surgery is sooner than later. Hopefully the pain doesn’t keep getting worse. It’s made me question whether what was normal for me before was actually normal, because I don’t remember what that felt like any more. I’m worried that they won’t find anything because having answer is better than not having one – even if it means something is wrong with me. (That’s pretty much why I asked to be sterilized at the same time – might as well make sure something gets done!)
This came out much longer than I intended it to – sorry about that! There will definitely be an update after surgery! (How long will I have to wait until I get a call??) Until then, here are a couple of stories that I found helpful. Many thanks to these women for sharing their experiences!
Thanks for reading! Until next time!