We’re back! After a winter doldrums absence, I am very excited to share Melissa’s story.
I’m so appreciative of Melissa for speaking with me about her endometriosis and chronic pain. I hope that any woman who experiences pain that is out of the ordinary will read this and feel encouraged to do further research, talk to a doctor, and most importantly, know that your pain is real and not just something you need to accept as normal.
I will confess I had never heard of endometriosis until Lena Dunham started speaking publicly about her battle with it. After years of dealing with crippling pain, Dunham recently had a hysterectomy. (Note: Hysterectomies have not been shown to be a cure for endometriosis.) Several of my friends have been diagnosed with endometriosis in recent years, and they, too, have similar stories of experiencing pain over the years, the type of pain that interrupts your everyday life, and being told it was “normal” or “that’s just what cramps are.”
Melissa’s diagnosis is interesting for several reasons, namely that, as she says, most women do not get diagnosed until they start trying to have children, while she was diagnosed at 21. It was her self-advocacy that resulted in a “quick” diagnosis (quick being 5 years…). Should she have had to fight so hard for herself? No, of course not. But as women we have to learn that we know our bodies best and it is often the case that we have to fight really hard for our pain to be taken seriously. Sharing stories and information like this is a good start.
Melissa also has a podcast you all should check out called Lighting Myself on Fire (awesome title) where she discusses all things feminist, health, pop culture…everything, basically.
Thank you, Melissa, for your time and honesty and story
What is endometriosis?
Endometriosis is when endometrial tissue appears and grows outside of the uterus. It can cause severe pain. The amount of tissue you have doesn’t always correlate with the amount of pain you have. For example: I have a mild case but when I had periods, I would miss school and work because of it. Other women can have severe cases but never have any pain.
Can you tell me about the path to you being diagnosed with endometriosis?
I was diagnosed at 21, which is fairly young. Usually, women aren’t diagnosed until they start trying to have a family. I had been complaining on severe period pain since my mom took me to the GYNO at 16 or 17. I would have to stay home from school because it hurt to walk (or do anything, really) and I felt like I was having hot flashes or a fever. My second GYNO (the first one who prescribed birth control as a way to treat it) would tell me “pain is normal” and unhelpful things of that nature. Finally, when I was 20 and in college, I finally convinced her to do an ultrasound to see if anything looked abnormal.
Over the last 3ish years, I had researched endo and knew the only true way to diagnose it was through a laparoscopic surgery. Or, if you were truly “lucky,” an ultrasound would show chocolate cysts, and that generally meant endometriosis as well. I was supposed to do a transpelvic and transvaginal ultrasound, but I panicked and didn’t do it. Everything looked “great” through my stomach.
Fast forward to a year later: I was on 3 month monthly birth control pills because I couldn’t skip work or class for 3-5 days every month, and the pain had worsened. First GYNO ordered another transpelvic and transvaginal ultrasound. Went through with both, and it hurt like hell. Still, nothing was found. By 21, I had researched the “next steps” if doctors suspected endometriosis, so I begged her to send me to a reproductive endocrinologist just to try something new. Pretty sure she agreed to shut me up.
I met with the reproductive endocrinologist the June before my senior year of college. He believed something might “be there,” but he wasn’t willing to cut me open and laser off any tissue because it could hurt my egg supply (very Texas). I kept pushing, though I don’t remember specifically what I brought up. Maybe something about endometriosis affecting fertility? Could we check that? The answer is yes. He ordered a AMH blood test. Anti-Mullerian Hormone measures what your egg supply is sitting and compare it to women your age. It can show if you had a low supply of eggs or a normal supply. My tests came back extremely low (0.21 in August of 2013—0.15 in April of 2014. I’m sure it’s hit zero at this point). As my RE explained, my levels should sit at a 6.0 or 7.0—especially for someone so young. I had to wait a month to find this out as I was in Nacogdoches taking summer classes and working, and my specialist was in Houston. No one would tell me anything over the phone. So by the time I finally had that follow up appointment, I already knew what he would tell me. The internet is a big, sometimes too helpful place.
My specialist wanted to know why it was so low, so he ordered an array of tests. They made me do a Counsyl genetic test, because they thought I might be a fragile x carrier or some other abnormality. A symptom of low AMH. I had to get another transvaginal ultrasound to look at the follicles on my ovaries (3 on my left, 1 on my right in 2013—if I remember correctly). Someone in their early 20s should have dozens.
Because of my low AMH, because they could finally see something was wrong, we were able to discuss my surgery again. Why not go for it if I don’t have any eggs to lose?
I remember going home and discussing it with both of my parents that afternoon.
So, I got the surgery 5 days before I started my final year of college. They found “mild” endo and lasered it off. Two weeks later my genetic testing came back—everything was negative. My very looming infertility was “unexplained.” I was told, by my specialist, that I should find a husband and start having kids immediately. No one spoke to me about harvesting and freezing my eggs at this time. By the time I thought about asking, I was told “it really wouldn’t be worth it.”
I hope that one day it won’t be something that women won’t have to advocate so fiercely for. I really hope that since I’m too open and honest about my experiences, my friends and family and their friends and family and so on will learn to ask questions and not take no for an answer.
If a doctor or nurse hasn’t sufficiently answered your questions, you have every right to keep them in that room until you fully understand the complexities of your particular situation.
How does your endometriosis present?
Right now, it manifests in my pelvic floor dysfunction. But some back story: in 2014, I had a lovely GYNO in Hawaii that finally revealed to me that there wasn’t any scientific reason to have a period unless you were actively trying to have children. So, since 2014, I’ve skipped all my placebo pills and haven’t had a period since.
But, because of all the pain and tension I’ve gone through for so many years, my pelvis became very weak. In 2014, I started waking up in the middle of the night in burning pain centered over my pelvis. It lasted (and still does) for hours. These “episodes” were the first time I experienced pain that I couldn’t force myself to sleep through. Initially I thought I had cysts, but no. I was sent to a pelvic floor physical therapist to try and correct the problem.
A PFPT is someone who sticks their fingers up your vagina and, in my case, tries to massage all the tension in all the muscle layers so that, hopefully in the future, you can walk away and enjoy life pain free. Three years later and it’s helped a bit. Insurance sucks.
Does it affect your everyday life?
Yes. I developed pelvic floor dysfunction because of the pain from endo. My Generalized Anxiety Disorder became a fully fledged monster. I have “episodes” of pain (from my above answer) that I can’t control and 3 years of pelvic floor physical therapy hasn’t fixed, but dampened. Dating and intimacy scares me. I word vomit about my chronic pain to basically anyone who’s willing to listen. The list goes on and on and on. But, for all the bad (and no, I wouldn’t say I would do this all again or anything like that), I’ve made it my personal mission to talk about reproductive health issues to anyone with a heart. Talking about a problem makes it less taboo, and I do take a lot of pride in talking.
Do you worry about fertility issues (if you want children)?
If I’m not infertile now, I probably will be any day. Then I’ll be in premature ovarian failure. I sort of thought about having kids when I was younger, but right before the diagnosis I think I finally figured out they weren’t for me and I didn’t want them. I had an extremely hard time dealing with the fact that the “natural” choice or “path” was taken from me.
What have you learned about healthcare through dealing with this diagnosis?
It’s shit. Especially for women. Women’s pain isn’t something doctors want to believe. I don’t have enough fingers for all the times a GYNO or specialist or some other “doctor” has told me “pain is normal” or “have a glass of wine and relax” or “maybe it’s not that bad?”
I was lucky—I was diagnosed in 5 years. A lot of women believe their doctors truly have their reproductive health in mind. It’s simply not true. I had to learn to advocate for myself to get the healthcare I deserve. I won’t go to any GYNO that lists a hysterectomy as a cure for endometriosis (it’s not) or promotes Lupron as a remedy (it’s also not). There is no cure, and they need to stop selling the idea.
My most recent slap in the face was in the beginning on 2017. I had gotten off my parent’s insurance and was a hot shot. I didn’t realize that switching meant having to leave my great pelvic floor PT for another one even though they were the same company but one location didn’t take Cigna. I also didn’t realize that my insurance wouldn’t cover anything until I hit my $1000 deductible. I was going every week. I couldn’t afford $480 a month just for someone to stick their hand up my vagina and make me do the opposite of kegels. My new PT did her best to help though (recommended some dilators, tried coding some of our exercises differently, etc) but honestly, it wasn’t enough to deal with that financial burden for something that didn’t seem to be going away.
Living with Chronic Pain
I’m dealing with chronic pain. It stems from the endometriosis, which later developed into pelvic floor dysfunction. I guess it’s a combination of “dealing with it” and rituals. I have no other way to move through life, so I have to suck it up, go to work, and learn how to live my life around these flare ups.
I don’t have enough fingers for all the times a GYNO or specialist or some other “doctor” has told me “pain is normal” or “have a glass of wine and relax” or “maybe it’s not that bad?”
I’ve been out of therapy for almost 2 years now, but I learned coping mechanisms from both of my therapists (who were just such great, wonderful women—I really lucked out). My GAD is categorized with “obsessive thoughts” or “repetitive, intrusive thoughts.” For example, early on, I would constantly think about femininity and what womanhood meant without a functioning uterus. “Who will want me?” or “what am I if I can have kids?” Over, and over, and over again. It sounds deceptively easy, but I was taught to ask myself “Where’s the evidence that a someone wouldn’t want you?” and “Do kids really equal being a woman?” After years of practice, I can easily quell thoughts like this now.
After I left Honolulu and moved to Denver, I was stupid and adopted a chiweenie the day after I moved into an apartment and had only 2 suitcases to my name. My dog, Pele, is probably the best thing that’s ever happened to me. When I’m having days where I feel like I’m having hot flashes or wake up in the middle of the night with a flare up, she’s there with me. There’s also something about having this little angry dog that relies solely on you for food and comfort that makes you work through the pain and put something else in front of it.
I’ve also utilized the techniques my physical therapists taught me. I have a dilator that I can insert to help relax my pelvic floor if I’m willing to put myself through the uncomfortable pain.
On Advocating for Yourself
You learn what you need, so tell your physicians exactly what it is. Through the last 5 years I’ve learned that the veins in my arms can’t handle anything above a butterfly needle—if you can’t afford a self of dilators, a good PT will give you medical grade gloves to fill with water and freeze as a substitute—at my yearly, I need the smallest speculum inserted—and more.
My main advice would be do not take “no” for an answer. If a doctor or nurse hasn’t sufficiently answered your questions, you have every right to keep them in that room until you fully understand the complexities of your particular situation. And while doctors and nurses may not realize saying “relax” or “breathe” is patronizing, you are within your rights to tell them to “shut the fuck up.” I’ve done it before and I’ll do it again.
Talk about it. Become a broken record until something changes. Hell, I started a podcast in 2017 and during one of our first episodes my cohost and I talked to my physical therapist about pelvic floor dysfunction, its treatment, and how everyone should know about it. I (try) to write about it. You’ll connect to other women going through similar things if you keep talking about it. You’ll educate and get educated, too.
Thank you, Melissa. I’m so sorry you have to go through this but happy that you’ve chosen to be so outspoken and in the process, help other women.