Endometriosis Is Not 'TMI'

As March fades and the hashtags featuring endometriosis awareness filter out, a new buzzword will soon replace what was endometriosis. Of course, for those living with the disease, hashtags do nothing to alleviate the pain, struggling and stress that continues well after March, April and so on. As someone who personally knows what it is like to deal with this chronic disease I can attest that it is no cakewalk. In fact, some days I can’t walk at all from the pain and can’t eat anything due to the nausea so cake is out of the question – but that is beside the point.

With recent celebrities raising awareness and new light being shone on endometriosis, the conversation has been more open than it was previously. Although, I find when I reach out to others with endo on support groups and message boards there are so many topics and questions that many women feel are “taboo,” “TMI” or “silly” to bring up. Sometimes it seems like it is new information that women even menstruate, but again I digress. While we are struggling and desperately trying to find treatment we have to still filter what we are experiencing and that doesn’t seem right.

I am one of those people that have no problem telling it like it is so I wanted to lay some things out about endometriosis that other people might feel are embarrassing, awkward or didn’t even know was a part of endo. Before that happens though, it needs to be clear that each person dealing with this disease is an individual with a different body, different genetics and therefore can experience different symptoms… well, differently. My story is going to be different than the next woman’s, although we can share similarities which is one of the ways we get through the bad days (and how research is conducted – again, different topic altogether). Also, I am not a doctor and in no way does the following provide a diagnosis for anyone or offer treatment advice.

Here we go – below is a list of some less discussed endo-related topics:

1. It’s not just our periods! This one isn’t exactly groundbreaking or anything, and thankfully is even mentioned in the newer awareness commercials – yeah, we’ve got TV ads now – but, it still needs to be repeated about umpteen times. I’m still met with the, “So, like that’s the thing where you just have like really bad periods, right?” Like no. I actually have gone years without a period and still had pain. Endometriosis is not just bad cramps, bad periods, bad mood swings, etc. It is not just associated with a woman’s menstrual cycle as the pain can be constant (ahem, my current situation) and it is agonizing. Even a lot of doctors don’t understand this point so please, talk about it more.

2. Hormones. Why is it so bad to talk about hormones? Yeah, hormones can make you emotional, but so does watching “Marley and Me.” One of the main treatments for endometriosis is prescribing some form of hormone-related treatment like: oral contraceptives (the pill) that contain both estrogen and progesterone, the vaginal ring, progesterone in a pill by itself (not BC), Depo-Provera (the shot) which contains only progesterone, an IUD which contains progesterone, the implant which contain progestin, and then Lupron-Depot. These are the most common hormonal treatment options that women receive currently. Talking about how these medications impact our pain and symptoms can help when we are weighing our treatment options. Hormonal treatments are not the most fun and leads me to my next point which is…

3. Side effects. It isn’t a new thing to take birth control but taking them to treat something rather than as contraception can be a downer – literally, as they can affect mood. Having to combine hormonal drugs can lead to side effects that can sometimes seem to magnify the original issue. Common side effects that women experience include nausea, weight gain, headaches, depression and so on. The more intense treatments like that of Lupron can also lead to bone density loss and menopausal-like symptoms.

4. Oh yeah, weight gain. Endometriosis itself causes bloating in most women which is referred to as “endo belly” which in itself can feel like you have put on quite a few pounds and even make you appear pregnant – this is quite cruel for those of us who are struggling with infertility. It’s treatments and associated symptoms can also lead to weight gain. As mentioned above, hormonal treatments can cause weight gain, and a lot of women experience stomach/bowel symptoms, making it difficult to lose weight. While the disease itself has not been said to cause weight gain, diet issues, constipation, pain, fatigue, depression, etc. can all lead to weight issues. Gaining weight when you already feel bad just brings you down even further. It can seem like a downward spiral sometimes when symptoms start building up, although hearing from others that they’re experiencing similar issues can let you know you’re not alone in the fight back up the spiral.

5. Poop. I may be crass in thinking this, but as an adult amongst adults I feel like talking about bowel movements should be more normal. Naturally, I’m not going to bring it up at a job interview or at the dinner table, but in context of course. The main thought in this is that if there’s something wrong with your digestive tract, it can be serious, and most people seem to be super embarrassed to bring it up. With endo a lot of people experience either constipation or diarrhea as it can either grow on your bowels or these issues can occur in relation to your menstrual cycle. Talking to your doctor more openly about these problems can help in treatment and in the big picture of knowing more about the disease as a whole.

6. Sex. I really should have thought more about the order of these, not exactly the best one to have after poop… but yes, sex. Sex can be incredibly painful when you have endometriosis. For some this can truly hinder a relationship with your bae (is that still in?). Knowing this is more of an issue, discussing it more openly, and for god’s sake communicating with your partner is so necessary. I personally can get into funks where I feel shame about this and like I’m less of a woman because I feel pain when I try to be intimate with who I love… How silly is that? I feel less of a woman because of something I cannot control. Of course, I understand the thought process behind it but because I don’t see many women talking about it, those lows are more difficult to get out of and it is also hard to explain to my boyfriend why I feel how I do.

Alright, those are my main topics. As I wrote I kept thinking of so many more that should be discussed more freely, but I’m pretty sure I’d have a dissertation on my hands if I kept going. My key point here is that endometriosis is already tricky when discussing it because it affects women and when it comes to our health we really have to fight to be taken seriously and to be heard. If we aren’t willing to talk openly amongst one another then how are we going to be heard in the doctor’s office, the emergency room or for that matter, congress? Keep the hashtag going if that will keep the conversation flowing – whatever gets people talking. I am one in 10 and I’ll talk about it all.