Polycystic ovary syndrome (PCOS) and endometriosis (endo) are two gynecological disorders that affect approximately one in ten of women at childbearing age.
I am one in ten. I have PCOS.
My sister is also one in ten, however she has both PCOS and endometriosis.
I got lucky, and the first month I had real medical assistance, I got pregnant. It is not common for medical assistance to work so quickly, and I am forever grateful that it did for me.
So, what are polycystic ovary syndrome and endometriosis, and how are they tied to fertility?
Keep in mind, I am far from being a medical professional. Everything in this blog is based on my own research* as well as personal experience from myself and my sister.
Polycystic Ovary Syndrome is caused by an imbalance of hormones, which causes the egg that is supposed to be released for that menstrual cycle not to mature as it should, and possibly not even release.
As you could probably imagine, this means that women with PCOS can have irregular periods, or go for long stretches of time without a period. Thanks to the irregular or nonexistent periods, PCOS is one of the most common causes of infertility among women.
PCOS also can cause cysts to develop in the ovaries, however they are not always present, despite the name “polycystic ovary syndrome”.
Symptoms of PCOS can include:
– An irregular or nonexistent menstrual cycle
– Excess hair growth called “hirsutism”
– Acne on the face, chest, and/or upper back
– Thinning hair or hair loss
– Weight gain and/or difficulty losing weight
– Darkened skin, particularly along creases along the neck, groin, and underneath the breasts
– Skin tags
PCOS heightens risks for some other health problems, but that does not mean a woman with PCOS will develop any of the following problems:
– High blood pressure
– High cholesterol
– Sleep apnea
– Endometrial cancer
At this time, there is no known cure for PCOS. Women can treat their symptoms, but the underlying disorder cannot be cured.
Endometriosis is when the lining of the uterus (called endometrium) grows outside of the uterus, which makes it harder to get pregnant, but not impossible.
The growths are not cancerous, but are still problematic. The extra growth bleeds, similarly to the endometrium that grows as it should inside the uterus during a woman’s period. The extra bleeding can cause swelling and pain, because the endometrium is bleeding in areas that it shouldn’t even be (anywhere other than inside the uterus) and it’s more difficult to get out of the body.
Additionally, the growth of endometrium can block the fallopian tubes, or cover the ovaries and trap blood in them, which can cause cysts to form. The growing and shedding of endometrium can also cause scar tissue to form, which may cause pain and also make it difficult to become pregnant.
Most commonly, women with endometriosis report pain of different varieties. These pains include:
– Very painful menstrual cramps
– Chronic lower back and/or pelvic pain
– Pain during or after sex
– Intestinal pain
– Painful bowel movements or pain with urination
Other symptoms of endometriosis can also include:
– Bleeding or spotting between periods
– Digestive problems, such as diarrhea, constipation, nausea, etc.
There is currently no known cure for endometriosis, but women can manage their symptoms.
Getting Pregnant with PCOS or Endometriosis
Getting pregnant with PCOS is not impossible, but it may take more effort.
To help increase their possibility for getting pregnant, women can try:
– Losing weight, if they are overweight or obese
– Medicine to induce ovulation, such as clomiphene (Clomid)
– In vitro fertilization
– Surgery, in extreme circumstances
Women with endometriosis can also get pregnant, though again, it may take more effort. Endometriosis is estimated to be the cause of infertility in as many as one in every two women. While no one is sure exactly how endometriosis causes infertility, medical professionals believe that possible culprits include:
– Endometrium growing may change the shape of the pelvis and reproductive organs, thus making it hard for the sperm to find the egg
– The immune system attacks the embryo
– The endometrium does not develop properly
A physician can make a recommendation on how to get pregnant, possibly including surgery to remove some of the excess endometrium.
PCOS, Endometriosis, and Pregnancy
PCOS can cause higher rates of miscarriage, gestational diabetes, preeclampsia, and a need for cesarean section (c-section) birth.
Babies also have a higher risk of weighing more at birth, and of spending more time in the NICU after birth.
PCOS does not automatically mean that women will experience any of the aforementioned complications. Women can reduce the risk of problems during pregnancy by:
– Reaching a healthy weight before becoming pregnant
– Reaching healthy blood sugar levels before becoming pregnant (metformin is sometimes prescribed to assist)
– Taking folic acid as directed by a doctor
Once pregnant, women with endometriosis are not typically at higher risk for problems. In fact, many times, women may notice symptoms from endometriosis lessening or even ceasing all together throughout the pregnancy.
How do PCOS and Endometriosis Affect Me?
As I mentioned before, I have PCOS and my sister has both PCOS and endometriosis. We both were diagnosed with PCOS in late June 2017.
I had always had irregular periods, but as I got older, they became more erratic and less predictable. When my husband and I decided we were going to start trying for a baby within a year, I knew I was going to need to figure out why I was so irregular because it was going to make trying a lot more difficult.
My doctor referred me to my OB/GYN (who I absolutely adore) to get some testing started. We ran some blood work first, and my levels came back within normal range, but close to the limits. Next, we took an ultrasound of my ovaries, and there were no cysts, but my eggs weren’t maturing and releasing. I also have mild depression and functioning anxiety, excess hair growth on my upper lip and chin, acne, thin hair, and a hard time losing weight. Signs were pointing to PCOS.
I started on Clomid, and I went back in for a blood test to make sure I ovulated. Lucky for me, I did, and I got pregnant that first time!
At around 14-16 weeks, I took the glucose test for the first time because pregnant women with PCOS have risk of developing gestational diabetes. It came back clear, so I took it again at the regular scheduled test between 24 and 28 weeks (which also came back clear).
I did go into labor early with my son, but that was not due to my PCOS. It appears I have a slight bicornuate (heart shaped) uterus which may have caused my early labor (but I will go in to that more later in another blog).
My sister was also diagnosed with PCOS in late July 2017. Since I do not have endometriosis, I asked my sister to tell me what she wished she had known about endometriosis, what other people need to know about it, and her story of how she got her diagnosis. Here is what she had to say:
My best advice for people who think that they have endo, is that they need to not give up. Getting an answer to your pain and symptoms may seem unobtainable, you may feel crazy, you may feel like there isn’t hope, just don’t give up. You are your greatest advocate and you know when something is wrong with your body. Excruciatingly painful periods or a painful sex life isn’t normal.
The condensed version of my diagnosis:
I started my period at 12 years old. I remember being in so much pain that I would curl up in a ball on the floor in tears because I felt like my insides were being torn apart. At that point, my mom took me to the doctor and put me on birth control. The doctors had basically said menstrual cramps are normal, take some ibuprofen. So up until I was about 19 years old, this became my normal. Once I hit 19, along with extreme pain, I started having extreme pain with sex. Sex is supposed to be pleasurable but to me it felt like I was being stabbed in the abdomen with a dagger. It hurt so had to where I would start throwing up from the pain. I went to the E.R. and left with no answers, and was told to return if the pain came back. This happened over and over for 3 years, each doctor saying they didn’t know what was wrong and to come back if it happened again. I had numerous exams, ultrasounds, scans all coming up blank.
I started doing my own research January of 2017 and came across the disease endometriosis and everything clicked. All my symptoms matched perfectly.
In April 2017 I went to urgent care for my severe pain and told the doctor I beleived I had endometriosis. He was the first doctor that took me seriously and listened to what I said, and he wasn’t even an OBGYN. I remember bawling because he actually believed I wasn’t crazy. He referred me to a new OBGYN who also listened and offered to perform a laparoscopy to confirm my diagnosis. On July 13th 2017, I underwent surgery where endometriosis was found.
– Kendra McClaskey
If you think you may have polycystic ovary syndrome or endometriosis (or both!), advocate for yourself. Find a doctor that will listen to you and take the time to address your concerns, and not just throw a prescription at you or hurry you out the door.
If you have already been diagnosed with one of both of these conditions, it does not mean you cannot become pregnant. It may not be an easy road, but you can make it happen.
Remember, these are common conditions. You are not alone!
* My research was done using various medical websites, but information for this blog was taken from The Office of Women’s Health.