Endometriosis Awareness Month
Every March is endometriosis awareness month and there have been so many other things going on this month that I haven’t been writing about it as much as I normally would! While the other things that have come up this month have been a bit more important, this is near and dear to my heart as I am someone who suffers from endometriosis. And it is something that 1 in 10 women suffer from in this country with no cure. So, let’s dive into signs, symptoms, treatments, and so much more for what endometriosis (endo) is!
Since there are quite a few of you who are new here since the last time I’ve written about it, I want to give a quick overview of what endo is and what it actually does inside the body that causes the problems that it does. So here we go! The uterus creates a thick endometrial lining all month long in case the owner of the uterus gets pregnant. Someone getting their period is the uterus shedding this lining when the person did not get pregnant that month. I’m hoping most of us knew that but there is an overview just in case. In someone with endo, however, the uterus overproduces the lining and the lining grows out of the uterus and onto other organs around it. This is where so many of the issues come from. With endo, a person can be stage 1-4, which just denotes the severity of the endo growth a person has. It used to be thought that the beginning stages of it were more painful because the body hadn’t adapted yet, but more and more gynecologists and endo specialists are saying that each body reacts differently and a person with stage 2 could be in more pain than someone with stage 4 or vice versa. There is no cure for endo and most women end up having to wait 10 years or more for an accurate diagnosis of their issues. Endo is something you are born with, not something you develop so if a person has it, they will most likely start presenting symptoms after their first few periods.
Here is my endo story; please keep in mind that it is different for everyone and I was lucky at how quickly I got diagnosed.
I was living in Chicago and working at American Eagle when I stood up from what I was doing and passed out due to the amount of blood that left my bodes quickly. I went home, tried to relax, eat something, drink some water, etc, but I kept bleeding a crazy amount so I ended up going to the hospital. I could write an entire blog post about going to a Chicago ER and what an insane experience that was, but the bottom line was I waited for several hours, the pain increased, bleeding was getting worse, and when I finally got to the back, I had a male ER doctor who was very dismissive. Endo can only be diagnosed with surgery, so the doctor told me that was most likely my issue and gave me a recommendation for a gynecologist, and sent me on my way. From here I met with many different doctors who thought I may have endo but wouldn’t operate on me to see for sure, which meant I couldn’t have the official diagnosis, which meant that there were certain treatments my insurance wouldn’t cover. I started to have extreme fatigue, extreme chronic pain, and my body rejected all forms of pill birth control. After I was told I might lupus, MS, cancer, and potentially fibromyalgia, a gynecologist finally agreed that I had endo, and wanted to do a laparoscopic surgery on me. Laparoscopic surgery is basically just exploratory surgery where the surgeon makes tiny incisions and inserts a small camera to just look around. Once we did this, it was confirmed I did in fact have endo, a pretty severe case, and would need to start doing some treatments to make this better. Sparing the rest of the details, I ended up getting an IUD to help control the insanity of my periods, but there are no other options except for surgery to remove all the endo spots on my reproductive organs, bladder, bowels, and intestines. I am seeing a specialist in April who will hopefully be able to help me and get me in for the surgery to get things cleaned up!
Like I mentioned before, there is no cure. So even when those of us that get this surgery and get all of the endo spots removed, they always come back. Getting the surgery means you are giving yourself some time to live life relatively pain-free and without some of the more egregious symptoms, but eventually it will come back. There are diet changes and medications out there that can help make things easier on those of us with endo, but nothing will ever truly make it go away at this point. I wanna go over some of the symptoms that people with endo also deal with regularly because I have been told more than once that it’s “just a period thing” and it “can’t be that bad”. So I would like to explain just how bad it actually is.
Symptoms include but are not limited to: painful periods, painful ovulation, excessive bleeding during periods, spotting and excessive bleeding in between periods, pain during sex, lingering pain after sex, pain surrounding the entire pelvic area, joint pain in the knees and hips, lower back pain, rib cage and respiratory pain, high levels of inflation in the body that can cause other issues, extreme swelling and tenderness of the stomach, kidney-related issues, bowel, and intestine related issues, bladder related issues, unpredictable menstrual cycles, fatigue, increase ovarian cysts, and infertility. There may be one or two things I’ve forgotten but you get the gist.
The main problem with endo treatment and the reason it is so hard to deal with is that it is incredibly under-researched and doctors are misinformed about it. No money is being put into researching how to actually solve this problem or how it comes to be, and then doctors are not being given the resources to actually help patients when they come to them with this issue. The current treatments for endo out there are just not good enough and often place the body and the person dealing with under more stress than they were before. Orilissa is the first endo only drug that has been approved to treat endo specifically (I attempted to take this, it didn’t work for me, here are those posts here and here) but you can only take it for years max because of the massive side effects it has on bone density. The other common drug used to treat endo is something called Lupron that puts the body into menopause while also giving you a million other horrific side effects like extreme depression, worsening of all the endo symptoms, and all the things that go along with going into menopause. There is birth control of course, but that mainly just helps get the periods regular and sometimes can help with how much the person actually bleeds, but doesn’t help with any of the other endo-specific symptoms. Last but not least the last resort for many people is a hysterectomy. There are various ways that a hysterectomy can be effective in the stopping of the endo, but there are cases where a hysterectomy is not the thing that actually ends up solving the problem. It depends on a lot of factors and everybody is different. None of these are really awesome treatment plans.
If you think you have endo, you definitely need to speak with your doctor. I am simply relaying my experience and what I have found out from years of research and being active in the endo community, but I am not a doctor (shocking I know) and there could be other issues at play. I have also linked a bunch of resources down below for you to read more of the scientific research behind it, hear from others who suffer from endo, and also see the ways that you can help and bring awareness to this issue. I would also like to just put a disclaimer here that you should never ask someone when they are planning to have kids. They may not want kids, they may not be able to get pregnant, or they may be struggling to get pregnant due to endo or PCOS or any other millions of reasons. It is not any of your business and if they wanted to share with you, they would.
Thank you for making it through this post, and all the other posts I have listed below and written. If you need any more endometriosis-related content, give my Instagram a follow where I chronicle my life in general, talk about endo, and all my other health complications. Oh and lots of fun fashion content too:)
Madey
Other endometriosis material:
Endometriosis Foundation of America
Cover art by Avery Lynch