*Trigger Warning: discussions of pregnancy, difficulty with pregnancy, infertility, gynocology, and similar topics.*
So if this isn’t the first post of mine you’re reading, you know that I’m an open book when it comes to my mental health. Well, I’m pretty much an open book about everything. I’ve also wanted to talk about my journey with my reproductive health too for a few reasons.
One, it plays an important role in my physical and mental health. Two, because women are often shamed out of being open and honest about their reproductive health. Three, because there’s a lack of information and support systems for women who are struggling with their reproductive health. Four, because I’m freaking frustrated and OVER IT. Five, because it’s hella important for women to advocate for themselves, their rights, and their health.
I placed a trigger warning at the top because I know this is a sensitive subject for some. I also want to put out a disclaimer that I’m not an expert in these things, but I’ve done a lot of research. Also, some of the stuff I’m going to talk about is graphic and sexual in nature, but it’s meant to educate and support. And this post will be VERY long because I have a lot to cover. Also, for all the prudes – I’m a married woman, and either way, don’t judge people’s sexual choices if they’re consenting adults.
So I started my period when I was 9. I’m not kidding. I remember the day I started fondly (NOT). I thought I shit myself and tried to hide my underwear in the trash, but my mom found it and told me that it was my period. I thought I was dying and I cried to stay home from school but she wouldn’t let me. Weirdly enough she had the period talk with me shortly before this happened. I went a whole day at school with this happening and had no idea!
This is where the pain started. I have always had terrible cramps. I don’t know what life is like without it. I remember feeling very alone because none of my friends would start their periods until years later, and I had no one to talk about it with. I also developed very early and would often be called a slut and would be accused of stuffing my bra. Not that I could control when I started puberty or anything. That automatically made people think I was a slut. So elementary school was fun.
Fast forward to high school, and missed classes and bad gym grades because when my period came, I was out of commission. I didn’t know anyone experiencing awful, painful, heavy, irregular periods like I was, so people often thought that I was faking it or overexaggerating. Let me be clear: I’m not. Sorry. The pain is insane. And not just during my period. I have painful ovulation, which I could try to equate to your appendix bursting, but that hasn’t happened to me. But it’s really bad. And there’s also random cramping and stabbing and aches that will come at any point in my cycle.
Painkillers have also never worked for me. Even taking 1.5 and double doses don’t give me any relief. Heating pads and hot baths and ice packs don’t work either. I still do all those things, but they offer no relief.
I’ve had more ultrasounds than I can count to try and figure things out but there was no explanation. Everything looks good, it’s all functioning, etc etc. I was told countless times to go on birth control to regulate things and help with the pain but I was scared of it. I didn’t really need it, I thought. I just went through it for years and years, occasionally having ultrasounds and just was told to deal with it. How could my doctors not believe me? How could they not want to explore more to make sure nothing serious was wrong? I was at a loss for what to do, and every month I would dread the day my period started. I just wanted it all ripped out of me. Screw ever being a mother; I couldn’t live like this. Especially when pain didn’t start and end at my period.
Six years ago, I gave in and started the birth control pill. I started small with a light one with one hormone. At that time, I was with my now-husband, and was starting to think about kids, so I knew I had to be proactive because I needed to give myself a shot at fixing things. So we were to try the pill and see what would happen and if it didn’t help, we would try another one and go from there. As you can probably guess, it didn’t do anything. My periods would come around the same time every month, but they were still heavy and painful. That’s when my ultrasounds started showing cysts. Even though birth control is supposed to suppress them.
I tried a few different brands and still, no relief. Actually, things got worse. I always had clots, but these ones were much more prevalent. My legs hurt and my fatigue was at an all time high, and I was depressed. On the very last pill I was on, I felt so incredibly low, I was having suicidal thoughts. I had three periods in two months. This was at the point I was on it for almost a year, so I knew that this wasn’t my body simply adjusting. I had enough. I stayed on it for a couple more months and then I took myself off it it. Note: you should probably talk to your doctor before stopping birth control.
At this time, my doctor was FINALLY like hey, maybe something’s up here. To be fair, he wasn’t the only doctor I’ve ever had. He referred me to a gynocologist and suggested getting an MRI. My worst fear was mentioned as a possibility: endometriosis. I also got my first pap around this time – which I should have had much earlier in life, I know. It was painful and traumatic and I almost passed out. Later I would learn that this is NOT how they’re supposed to go. NOTE: Don’t be afraid to speak up about needing smaller instruments or needing them to be more gentle. You don’t deserve to have your paps be uncomfortable or painful. Also, GET YOUR PAP TESTS!
It took years for me to finally get into a gynocologist. There was trouble finding a specialist who knew anything about endometriosis or other pain issues associated with periods. Finally, I got one. I decided to read their reviews, and they were highly rated. Except for one comment – I had endometriosis but I was dismissed and I ended up in the hospital and almost died. Ugh.
At this point, I had met some people who had actually been diagnosed with endometriosis or PCOS. Our experiences were similar, so I did my research and went in prepared with questions and facts to point out. What can I say, my journalistic tendencies were acting up.
I went into my appointment and it started with a very kind student who asked a million questions and was empathetic. Fast forward to the specialist, who did a pap and pushed on my pelvis and said hmm nope, not endometriosis. He said he would feel it if I had it, and it would only be a concern if it were really bad or advanced.
I was stunned. What the hell was he talking about? I KNEW! he was wrong. I questioned him about it and asked for more definitive tests, and he said no because it costs too much money. Mind you, I live in Canada and pay taxes, so I should be entitled to our “free” health care, no? In a very condescending way, he told me to just take birth control continuously if I didn’t want a period anymore. When I expressed my concerns about how that works, he dismissed me.
I walked towards work that afternoon in tears. I was crushed and devastated and I felt like I was being lied to. I wasn’t believed. Maybe I just didn’t have a high pain tolerance? Maybe it’s really not that bad? I gave up on trying to get any answers for a couple of years after that.
Ooh but baby, it was about to get A LOT worse. The pain started to get so much worse. I don’t remember the last time I’ve gone to work when my period starts because honestly, it’s maybe been once or twice in the past three years. My husband has had to pick me up out of the bathtub because I can’t move. I’ve spent so many days crying in bed or on the couch because I just can’t deal with it. And then, I didn’t have a period for two months.
I’ve been late a few days before, a week a couple of times, but this had never happened to me before. I spotted a couple of times, and I experienced all the pain, but no period. I thought – oh shiza, could I actually be pregnant?! I’m not going to lie, as scared as I was, I was also so excited. I had thought that getting pregnant would not be a fun or easy process for us, so how cool would it be if it just …happened? However, I took pregnancy test after pregnancy test, went to the doctors for a test, and nothing. Let me tell you something: the pain a woman feels when she desperately wants to be pregnant and keeps getting negative after negative is indescribable. I wouldn’t wish that on my worst enemy. You feel like a failure. You feel worthless. You feel incomplete and defective.
My doctor was like okay, enough’s enough, let’s get you to another specialist. I had an MRI scheduled at this point and had to rechedule. In case you don’t know much about endometriosis, the only definitive way to diagnose it is through laparoscopic surgery. However, in recent years, it has been detected in some cases through an MRI. It’s not definitive, but it’s a start. Of course, when I finally had an MRI, it showed nothing. Another kick in the pants.
So getting a gynocologist was tough. I had been given a couple of names from a friend who has endometriosis and has specialists in my city. However, they were hard to get, so I settled for anyone my doctor could find. I finally got an appointment in another city. I just had that appointment recently.
I described my history, the fact that most of the women in my family have all had partial or full hysterectomies because this stuff runs in my family (no one has been diagnosed in my family with anything, and most of them agree that what I’ve gone through seems to be worse). This specialist was kind, understanding, and had the same suspicions I do. But no tests. My option was to go back on birth control and take a medication used to keep endometriosis at bay. For a year. Then we’ll see about maybe trying to have a baby. I bawled my eyes out in the office and for most of the day afterwards. I really did not want to go back on the pill. Not after my last experience. The specialist didn’t pressure me to do anything or make a decision right then and there. She gave me the prescription for the endometriosis medication and sent me on my way.
I was angry and sad and defeated. I would have to wait a whole year at least before trying to get pregnant? Why am I putting hormonal medication in my body when I don’t even know what’s going on? Why can’t I just go for the surgery? I didn’t get it. I still don’t. But I have to at least consider the option. With this medication, I most likely won’t have a period for a year. There’s a lot to it, but this medication has helped a lot of women with the pain. So maybe it’s worth a shot.
I don’t necessarily want to get pregnant tomorrow. If I did, I would be over the moon. What is hard for me is knowing that I have to wait. Plus, just because I would be trying to get pregnant in a year, doesn’t mean it’s going to be easy. That process could take years. I know that the older I get, the more risk is involved, even with medicine coming a long way. I’ve watched friends and family struggle for years to get pregnant and not have the easiest time, and I know how exhausting that process is.
The thing about endometriosis is it makes it difficult to get pregnant. For some, it’s impossible. Especially depending on what stage you’re in. There could be other things happening that are not endometriosis, but all the signs are there. The problem is that I don’t know. And I really don’t want to learn the hard way that something’s wrong. I’m trying to be proactive because if it’s going to be hard to get pregnant, I want to be prepared. If it’s going to be unsafe or impossible to get pregnant, I don’t want to try.
Some of the symptoms of endometriosis are: painful periods, irregular periods, painful ovulation, pain between periods, painful sex, fatigue, and there’s probably more I’m forgetting. I check off all those boxes. Endometriosis also can’t be cured. It can be managed, and it can be removed through surgery, although sometimes that’s more painful than the endometriosis itself. The only way to truly get rid of it is a hysterectomy, which means no babies. It can also spread to other parts of your body, and in extremely rare cases, it can cause cancer. So can you see why I don’t want to just leave it alone?
More people than you might realize live with endometriosis. Some famous women that have been awesome and inspiring in sharing their stories are Halsey, Lena Dunham, Julianne Hough, Padma Lakshmi, and Susan Sarandon. There’s a similar condition many women face called Adenomyosis which causes similar issues. Gabrielle Union has been open about living with this. I’m so thankful to these women for sharing their stories and educating other women about what they’ve experienced.
I hold onto the hope that because other women in my family have been fertile, I will be too. But the bad thoughts always haunt me. However, I also have to deal with a lot of shame and people telling me I have no reason to be scared or concerned. Please, don’t be that person. Don’t ever tell a woman she shouldn’t worry about not being able to become a mother if she wants to, no matter her circumstances. Never.
I’m sure this is not the end of my journey. Again, I have a lot of reasons to share my story. I have felt alone in what I’ve been living with for so long, and I don’t want anyone else to feel that way. I don’t want another woman living with regret that she didn’t speak up or advocate for herself years ago. Things like endometriosis, adenomyosis, PCOS, and the like take years to be diagnosed, often because of a lack of education, ignorance, and lack of resources. Women are shamed and made to stay silent and feel unheard and unworthy. Women cry when no one is watching because they yearn to have a healthy reproductive system. They smile at your baby and hold them and coo at them, and then go home and cry because they don’t have that or they can’t have that. They watch others get pregnant so easily and often and look at their bodies in the mirror with disgust, feeling like a failure. It is NOT our fault, but that doesn’t stop the negative mental hell we live with.
If you are experiencing any of these issues, or know someone who is, hug them. Please also reach out to me if you want to talk about it. I’m always here for you.