Hello beautiful people.
March is endometriosis awareness month, so I wanted to take some time to explain a little about what endometriosis and share my experience with it. I feel it’s important for women to know about endo because it’s not all that rare of a disease. It affects 10% or about 176 million women worldwide. So for today’s post I’m going to get really educational, really personal, and maybe even a little gross for some people, but that shouldn’t stop you from continuing to read. I feel that it’s important for every woman to be aware of this disease because it can cause a lot of problems and not very many people know about it. I definitely wasn’t taught any of this and had no idea it existed until it became a big problem in my life.
Ok, so first, what exactly is endometriosis? To state it simply, it what happens when the tissue that normally lines the uterus (or the endometrium) grows on the outside of the uterus or somewhere else it shouldn’t be. No one knows for sure what causes it (awesome, right?), but it could be caused by period flow problems, immune system problems, hormones, abdominal surgeries where the tissue could be moved by mistake, or from genetic factors.
Second, what are the symptoms? Pain is the most common symptom that women experience. This can either be very painful cramps during a period, pain during or after sex, or long-term pain in the lower back and pelvis. There is also bleeding or spotting between periods (but this doesn’t always mean endometriosis), infertility, and stomach problems (especially during periods.)
So why does endometriosis cause so pain and health problems? Well, when the tissue from your uterus ends up where it doesn’t belong, it creates endometriosis growths. These growths bleed, just like your uterus lining does every month, except this blood doesn’t have anyway of getting out of the body. This causes swelling and pain. If the growths continue to expand, they may cause problems. They can block you fallopian tubes, trapping blood in the ovaries, causing cysts. They can also form scar tissue that may cause pelvic pain and can also make it harder to become pregnant. Finally, they can cause inflammation and intestinal/bladder problems.
I got all this information from womenshealth.gov and endometriosis.org. You can visit these sites, and others, to learn a bit more about endometriosis. It’s pretty educational and while I was doing the research for this post I learned quite a bit because none of this was ever fully explained to me. Not in depth anyway.
Ok, now on to my experience with endo. It all started in 2013 when one of my doctors was doing a routine physical exam and felt a mass in my lower abdominal area. She was pretty concerned and ordered an ultrasound to find out what it was. It turned out to be a cyst that was 13 cm in diameter (about the size of a softball) and it had engulfed my right ovary. Unfortunately, I hadn’t had any symptoms to tell me this was going on. I, amazingly, hadn’t had any pain from the cyst and no unbearable pain with my periods. The cyst grew without my knowing. – At the time, I was on quite a few different medications and that might have had something to do with there being no symptoms from the cyst. – So, I had a laparoscopy to remove the cyst as well as my ovary. The cyst had basically killed my ovary and it couldn’t be saved. After that I started on the Depo-Provera birth control shot that is administered every 3 months. It was supposed to lessen my bleeding and control the endo. – A little background, with my auto immune disease I need to be on a birth control that contains no estrogen, in order to prevent blood clots. So this gave me limited options.– Long story short, it didn’t work for me. One of the side effects with the shot is depression and with me already having depression and going off to college… well, let’s just say I did not have a good time. So I let the shot wear off and did not get any more doses.
After that, I was irresponsible and didn’t go on another form of birth control and basically let my endometriosis slip to the back of my mind. I’m “lucky” in that my endo symptoms did not include pain, so it was easy to forget about. Until one night in 2014 when I woke up to extreme pain in my lower abs. It felt like I was being stabbed and it made me feel nauseous. I went to the emergency room where they did an ultrasound and discovered that my lower abdominal area was filled with blood. (Ok that sounds dramatic. Maybe not exactly filled with blood, but there was a lot.) Turns out another cyst had grown and then ruptured. So I had another surgery.
After that I started to take things more seriously. I started on a different form of birth control called the Mirena IUD. It lightened my period and seemed to be controlling my endo. Notice I used the word seemed, because in 2016 I started having slight pain in my lower abs again. Nothing major, but to me it was a little concerning. So I made an appointment, did an ultrasound, and discovered I had yet another cyst. It was very upsetting, especially since we thought the birth control was working. My doctor gave me two options: we could do surgery to remove it or we could wait and see if it went away on it’s own. Given my history I didn’t want to wait, so we scheduled the surgery. I had to wait a couple of weeks because it was Thanksgiving time and, if my memory serves me correctly, we decided to wait until after to do the surgery so I wouldn’t be recovering during the holiday. Well guess what, in the early morning on Thanksgiving Day, I woke up in pain. Not as bad as the last time, but enough to make me feel miserable and hutch over all day to try and ease the pain. (It didn’t really work.) It’s safe to say that that Thanksgiving wasn’t great.
Not long after, I had the surgery, got the cyst removed, and started an estrogen free birth control pill alongside the IUD. The two working together made me stop having my period, which is what we wanted. And, I’m glad to say it’s working. I haven’t had a cyst in almost 3 years. That’s not to say I haven’t had a few paranoid scares a couple of times. But with everything I’ve been through, I think I’m allowed to be a little paranoid.
Now, this is definitely not everyone’s experience with endometriosis. I know someone who only has extreme pain with her periods. She is also using birth control to control her pain and endo. Also, I don’t want you feeling sorry for me because of what I went through. I wanted to share my experience to help raise awareness of the disease because someone maybe having symptoms and have no idea what they mean. They could just assume that it’s normal to have that much pain during periods and be needlessly suffering. Or they could let things go to far and end up with worse problems than I did. That’s why I seriously suggest that you research endometriosis and talk to your doctor if you think you might have it. Or if women in your family have it, it could be beneficial to bring it up to your doctor so you are both aware that, if it’s not a problem now, it could be something to look out for in the future.
Basically, endometriosis is not worth suffering for, no matter what your symptoms are. So don’t be afraid or embarrassed to get help.
I really hoped this helped you or at least enlightened you on the matter. As always, I’m open to hear your stories and comments, I love hearing from you.
Until next time friends.
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