Spoiler alert: if you have a Y chromosome or if you have a weak stomach, you may not want to read any further.
“Endometriosis is a female health disorder that occurs when cells from the lining of the womb (uterus) grow in other areas of the body. This can lead to pain, irregular bleeding, and problems getting pregnant .”
This basic definition of endometriosis does not skim the surface of how painful and annoying this condition truly is.
For years I had suffered with strange pains in my pelvis, the feeling of being “full,” and with having periods straight from the pits of hell. My doctors would pass it off as gas, or ovulation since my pap smears always came back positive. As far as my period goes they would say, “Some women have heavier flows, use the appropriate hygiene products to accommodate your needs.” Or they would say “you can try a birth control pill which will make them lighter.”
OK ladies, listen here. If your period is so heavy that you soak through your pad or tampon within 2 hours on the 3rd or 4th day of your period, there is a problem. If you have to wear two jumbo tampons and change them in an hour, go to the doctor and demand they listen to you. If you pass clots the size of the palm of your hand, continuously throughout your period, well you can guess what I would tell you. And cramps? Did you know that most normal women do not have them the entire week of their period? Yeah, I didn’t realize that until my doctor told me.
Other symptoms of endometriosis include:
Very painful menstrual cramps; pain may get worse over time
Chronic pain in the lower back and pelvis
Pain during or after sex
Painful bowel movements or painful urination during menstrual periods
Spotting or bleeding between menstrual periods
Infertility or not being able to get pregnant
Diarrhea, constipation, bloating, or nausea, especially during menstrual periods
I was diagnosed with endometriosis in May of 2012 after having laparoscopic surgery to remove an 8 cm+ cyst from my left ovary. In the months preceding my surgery, there were several times I experienced the worst pain I’ve ever felt in my entire life. The last time I had this pain, I woke up in the middle of the night and I felt like the insides of my lower right side were about to explode. I feared it was my appendix, but although appendicitis has similar symptoms not all of my symptoms lined up with it. With appendicitis your pain can be closer to your naval and you may run a fever. I hate emergency rooms, so my husband drew a hot bath for me as he had done several times before and I got it and prayed I would be OK. The pain finally subsided, and I called my OB-GYN the next day. I was certain that I had a cyst.
While seeing my doctor, she asked me to describe my near constant pain. She tried to tell me that it was probably painful ovulation also known as mittelschmerz. I assured her that I do have slight pain when I ovulate and that this is not slight and it does not occur just around the time of ovulation.
So I went in for the internal ultrasound. As soon as it was inserted BAM, on the screen, not to my surprise, there was whopping cyst on my left ovary. My doctor thought that it was follicular and would decrease and subside on it’s own.
A follicular cyst is extremely common, virtually all women will have them at some point, they just usually disappear without a trace. Your ovaries produce these tiny cysts each month to transport your eggs to your fallopian tubes. Sometimes they just keep growing, and sometimes they must removed.
My doctor sent me home telling me to wait it out and take tylenol, like tylenol EVER relieves pain. Weeks passed, and I was still in pain. I had a close friend tell me to have it removed because she had suffered for years with endometriosis and cysts aren’t something you mess around with. So I scheduled another appointment with my doctor demanding another ultrasound and asking about the possibility of removal. I went in to my ultrasound knowing the stupid thing had not shrunk, and not to my surprise, it had grown!
So I decided then and there I wanted it out. My doctor looking at the cyst said that it could be what is called a chocolate cyst. Yeah, delicious. These are formed from endometrial tissues that have collected blood, and old blood looks like chocolate, so yeah.
Here are some tasty photos of the visible difference between a follicular cyst and a chocolate cyst.
These are not photos of my cyst, but both times I had the ultrasound my cyst looked like the second one. How my doctor missed the fact that it did NOT look like a follicular cyst which is hollow and black, eludes me. Notice that the chocolate cyst is meatier. When an ultrasound is taken, black areas represent fluid. Chocolate cysts are layered with endometrial tissues and contain little fluid thus their thicker, gray appearance.
Endometriosis cannot be technically diagnosed unless you have surgery. I went in for surgery in May thinking that my surgery would take about 20 minutes tops, praying that I did not have endometriosis. Nearly 3 hours later, I came out. My doctor came in trying to talk to me even though I was still doped up. I managed to ask her if I in fact had endometriosis, and her answer was “Yes, you have a severe case of endometriosis. We had to remove many implants from your abdominal-pelvic cavity.” Although I was barely conscious, I had to choke back tears. I didn’t just have a cyst on my ovary, I had unnatural growths strangling my reproductive organs, and I would have to deal with this until menopause.
Here is a picture of a healthy reproductive system:
Notice how everything is pink and shiny, everything looks like it’s in place. This is not what my lady parts look like.
Endometriosis plagued parts:
Notice all of the black or dark purple spots found throughout. These are endometrial growths. Endometriosis can be different colors such as bright red, white, brown, or clear. My endometriosis is mostly black, and it spans through out my pelvic cavity up to my liver, hence the pain in my side. The doctor removed what she could, but there are still small patches that were imbedded too deeply into other tissues to be bothered with.
The surgery itself was not too bad. I was very sore for weeks, but I didn’t have any bruising, and my scars are tiny and barely noticeable. The biggest thing that concerned me was the 25% chance of ever being able to conceive a child that really got me down. I did not really want to have kids until I was told that there was a major likelihood that I would never be able to have them. My doctor told us that if we wanted them, to start trying in the next couple of years because it would probably take us a long time if ever.
In the meantime she prescribed me an oral contraceptive to slow the growth of my endometriosis. I first took seasonique which is supposed to make it so that you only have 4 periods a year. It made me retain nearly 8 pounds of water weight and made me feel terrible. Then I went on loestrin with a continuous dosage that would not allow me to menstruate. I lost all the weight from the previous pill, but I just did not feel right.
Doctors will typically want to suppress your ability to produce estrogen because estrogen is what fuels your body to ovulate as well as stimulates your endometrium (insides of your uterus) to become larger and engorged with blood. When you menstruate, your body evacuates your uterus of its lining. However, when you have endometriosis, you have implants of endometrial tissue outside your uterus. Therefore, while you have your period, these implants also shed blood and grow. Unfortunately this extra fluid has no where to go, so your body has to deal with absorbing it causing lots of discomfort and pain. It’s an endless cycle, so doctors will want to stop your period to slow the growth of these tissues.
After doing some research that I will share in another post, I decided to stop taking birth control pills, and pray for an alternative answer.
In the meantime, I have felt better. I haven’t had too many pains since then. My doctor was unable to remove all of the endometriosis so there are still some smaller growths in there that sometimes cause minimal pain.
And as far as my infertility worries go, I was able to conceive and I’m expecting our first child in July. I fully feel that had I not had my surgery that my chances for conception would have been nonexistent.
If you are reading this and are facing a similar situation or you know someone who is, I highly encourage you to have the surgery to have as much of it removed as possible. The cause for it is unknown as is the cure. Do not be too discouraged, just become informed. You know your body better than a doctor does, and if something seems wrong be persistent that they rule out all options. If they are stubborn and unwilling to listen, find another one. There are plenty of good doctors out there.