I was diagnosed in my mid–twenties, but suspect that I have had it even longer than that-maybe even since I was a teen. I have always had symptoms: long periods and extremely painful menstrual cramps (so bad that I missed school and work sometimes) and pain between periods (likely around ovulation, but I did not know as much then as I do now). I found out I had cysts on my ovaries in my early twenties, which is another common symptom of endometriosis. The most common noticeable symptoms of Endometriosis are:
- Pain before and during periods
- Painful Intercourse
- Infertility
- Fatigue
- Painful urination and/or bowel movements during periods
- Other gastrointestinal upsets such as diarrhea, constipation, nausea, etc.
Every month hormones in a woman’s body cause the endometrium inside the uterus to thicken, then if a pregnancy does not occur the lining is shed during her period. With endometriosis, the hormones cause tissue to grow outside of the uterus, but there is no way for it to escape the body so instead it causes inflammation and scar tissue, which causes pain.
The rogue endometrial tissue can grow on the ovaries, the outside of the uterus, the lining of the pelvic cavity and the fallopian tubes (really it can grow anywhere in the body-brain, lungs, skin, etc.-but it is rare for it to grow in places not around the reproductive organs). Many women who cannot conceive find out they have endometriosis when it is discovered that their fallopian tubes are blocked with scar tissue. Sometimes a Hysterosalpingogram (HSG), the test that allows doctors to see if there is a blockage by doing an x-ray while injecting dye into the uterus and through the fallopian tubes (painful), actually clears the blockage. I have several friends who have become pregnant shortly after having an HSG.
Doctors can assume you have endometriosis based on symptoms and the discovery of cysts when doing an ultrasound, but the only way to know for sure is for a doctor to perform a laparoscopy. A laparoscopy is a minor outpatient surgical procedure done under anesthesia where a doctor inflates the abdomen slightly with a gas and through a small incision inserts a small instrument with a light and a camera on the end in order to look around the inside the abdomen. This allows them to actually see the endometrial growth in most cases (sometimes they have to do a biopsy and look at the tissue under a microscope). In used to be common for women struggling to conceive to have a laparoscopy in order to check for endometriosis, but that is not the case today.
I was diagnosed with endometriosis at the age of 26 when I had a laparoscopy to remove what looked like bad ovarian cysts that were not getting better on their own. As it turned out, I had endometriosis so bad that one of my ovaries was actually twisted and stuck to the sidewall of my uterus. A laparoscopy is also the best treatment for the disease. Women with endometriosis have a higher chance of becoming pregnant within a year of having endometrial growths removed and scar tissue burned away during a laparoscopy.
The most common treatment is birth control pills. They usually will help keep the endometrial tissue from growing so rapidly, shorten periods and reduce pelvic pain. I was on birth control after my laparoscopy to slow the growth of my endometriosis. The problem with endometriosis is that every time I ovulate it gets worse. Birth control pills help keep it at bay, but when you are trying to get pregnant, birth control is not really an option (unless you do IVF…then it is part of the process!)
My current doctor did not recommend another laparoscopy because my fallopian tubes were clear, my cysts were not worrisome and all of our other tests came back normal. Besides that, it is nearly impossible to treat endometriosis with a laparoscopy without damaging some eggs. Even though large legions often need to be removed, smaller ones are generally better left in place. Our doctor thought that even though I have good ovarian reserve, that given my age and history, if I had the procedure it could potentially do damage (by depleting ovarian reserve) and it was still not likely we would get pregnant on our own.
Endometriosis has no cure, but pregnancy has been shown to temporarily halt the disease and in some cases symptoms are never as bad after pregnancy. It’s like a mean joke though: the one “cure” for the disease is the one thing the disease makes hard for you to achieve. It’s a cruel disease that doesn’t want to go away! Many women with endometriosis are able to get pregnant. It is hard to say just how many infertile couples are that way due to endometriosis because in the world of infertility endometriosis patients are diagnosed with “unexplained infertility” if they have good ovarian reserve, clear fallopian tubes, regular ovulation cycles and good results on a semen analysis. We had all of the above, so technically I have unexplained infertility.
As far as I’m concerned, “Unexplained Infertility” is the worst kind because there is no explanation. It just is what it is and that is a hard reality to accept. There isn’t something that can be regulated or fixed. I do not know why I don’t get pregnant and do not know if I ever will get pregnant. Every test has come back normal, every little minor issue has been fixed and everything that can improve my chances has been done, yet still pregnancy eludes us. It is so hard to feel like my body is broken, but not know how so I can fix it or change something. So we just keep trying, doing everything we can and hoping to get pregnant. I have heard stories of couples with unexplained infertility that never get pregnant and don't know why and I have heard stories of couples that get pregnant after giving up and nobody can explain why (maybe that's where God steps in). What we do know, is that IVF gives us our best chances so we will keep doing it until we achieve a pregnancy or can no longer continue emotionally or financially.
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