I’ve been wanting to write this post for a long time, but here’s the thing: I’ve never been officially diagnosed with endometriosis and I’m not certainly no expert on it.
Regardless, I’ve decided to share my personal experience, because whether or not I have it, endometriosis is a common condition that should be talked about so much more than it is. Women need more answers, and should not accept horrendous periods as being normal.
Please don’t take my personal experience as medical advice of any kind. If you have very painful periods, please seek out medical advice from a QUALIFIED professional. From my own personal experience, I know it can be tough to find someone qualified enough to discuss endometriosis, but a good place to start is with an OBGYN. Demand answers, and if you don’t get any, seek out a second, third, forth opinion.
What is endometriosis? It’s a condition in which tissue, similar to the tissue lining the inside of the uterus (called the endometrium), grows outside of the uterus and elsewhere in the body, particularly on the fallopian tubes, ovaries, rectum, bladder, and other pelvic areas. Just as the tissue on the inside of the uterus sheds every month, so too does the misplaced tissue, causing inflammation and often pain. There is no known cause of the occurrence. You can read more about the basics of endometriosis here.
Endometriosis is an extremely difficult disease to diagnose, which is why I’m still not sure if it is the cause of my symptoms. The only way to be certain someone has it, is to perform a surgical procedure, called a laparoscopy. So while I’ve had some of the very painful symptoms of endometriosis, including lots of lower back pain around the time of getting my period, DEBILITATING cramps, and heavy periods, I’ve never had the surgical procedure to diagnose it. Is it endometriosis? Maybe. Could it be another hormonal issue going on? It could be. Unfortunately, there is so little information known on the topic that it’s difficult to know for sure what’s going on with our bodies. What I do know for sure is it’s not normal to have such severe period pain.
While it’s very difficult to diagnose endometriosis, it’s also a very common women’s health issue – endometriosis affects an estimated 1 in 10 women during their reproductive years. That is a huge population of women! Unfortunately, there is no known cause for the condition, and no known cure.
My experience with severe period pain, what my doctor has said, why I haven’t [yet] had a diagnoses.
I began taking the birth control pill when I was 15 years old.
During my time on the pill, I didn’t have any pain with my periods. I remember thinking how lucky I was to have no cramping during that time of the month.
I went off the pill when I was around 23 years old.
Once going off the pill, I noticed my periods change drastically. They became excruciatingly painful. It was so bad I felt as though I would pass out some days. All I wanted to do was stay in bed on a heating pad. Just getting up to shower seemed impossible. I would take Advil throughout the day, even waking up during the night to take a couple capsules. Sometimes it didn’t touch the pain.
The pain would begin in my lower back two days prior to getting my period, then wrap around to my lower abdomen. The extreme abdomen pain and heavy bleeding would let up around day three.
I dealt with the pain for years, just assuming I happened to have very painful periods. My thoughts on that changed after someone told me I should get checked for Endometriosis.
The first time I heard of Endometriosis
Several years ago, we were celebrating Thanksgiving at my Brother-in-law and Sister-in-laws house. Dinner was ready, but I couldn’t move off the couch to get a plate. All I wanted to do was stay curled up on the couch. I told my sister-in-law that I had my period and the cramps were just too bad to move or eat. She asked if I thought I had Endometriosis. “Endo-wha?”
She told me her friend had it, and explained some of the symptoms she was living with. All the symptoms were so similar to my own.
That conversation sparked the beginning of a lot of research. For weeks I read and watched anything I could on Endometriosis. I thought for sure, this is it. It finally gave me insight into a possible reason why my periods were so painful.
Conversations with doctor’s
I made an appointment with an OBGYN office to discuss the possibility of having endometriosis. I ended up meeting with a nurse, who I discussed my symptoms with. After meeting with me for just a few short minutes, she said it sounded like it could be Endometriosis, and prescribed Naproxen to help deal with the pain. That that was it. I was dumbfounded. No diagnoses? Just “it COULD be” endometriosis?! No way to fix it? No information at all?! I just have to cover up the pain with pills? She explained that there’s no cure for endometriosis, and that whether I had it or I didn’t, the same medication for pain relief would be her protocol. I couldn’t believe it.
Some time went by. Aaron and I were married, and I was ready to start preparing my body for pregnancy. I was still having the same awful period pain, hated taking pills just to cover it up, and still wanted to know for sure what was going on. If I did have endometriosis, I wanted to know what that meant in terms of carrying a baby.
So, I decided to make another appointment with an OBGYN. After reading reviews and asking around, I found the Dr. I wanted to meet with and made sure the appointment was with her.
When I finally met with the doctor, I explained my painful heavy periods and my thoughts on having endometriosis. I told her I wasn’t there to get medication for the pain, but what I wanted was to know for sure whether or not I had endometriosis, even if it required a surgical laparoscopy procedure. I also told her I was hoping to get pregnant sometime in the near future, and, if I did have endometriosis, I wanted to know what that meant in terms of carrying a baby. A healthy pregnancy was my main concern.
After discussing my symptoms, she said it very well could be endometriosis pain, but advised me to hold off on the laparoscopy. She told me, while it is a minimal risk procedure, any surgical procedure does come with some level of risk. She said, if getting pregnant is your biggest concern, you should try to conceive first, and go from there. She explained that there is always a very small chance that any surgical procedure in the area of the reproductive system could cause infertility. She recommended giving it six months of trying to conceive, and if nothing happened in that time, then to go back and discuss having the laparoscopy.
In the meantime, she ordered an ultrasound to rule out other visual causes of the pain. I had the ultrasound, and it was normal.
We started TTC in May. I found out I was pregnant in October. It took 5 months.
I’m not sure if this helped with fertility or not, but it’s possible, so I think it’s worth noting: after the first three months of trying and nothing happening, one thing I did in hopes of increasing my chances of conceiving was reduce my dairy intake significantly. A video that I found helpful and informative on the topic at the time was this interview of Tia Mowry on the Dr. Oz show.
I do still want to know what is going on in my body, so I may decide to have the laparoscopy procedure in time. I’ll report back then.
If you have severe period pain, please discuss it with your OBGYN! If you’re able to find and meet with a doctor who specializes in endometriosis, that’s better yet. Advocate for our own health and don’t accept pain as normal!
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