Endometriosis Awareness Week happens in the beginning of March each year, and unfortunately it’s a disease I’m all too aware of. I was diagnosed in my mid-30s, after visiting a fertility specialist when our efforts to start a family weren’t working. Infertility is one of the possible side effects of endometriosis. I was just relieved that after years of ridiculously painful cramps, I had an explanation.
Endometriosis is a condition where the tissue that normally grows inside the uterus (the endometrium) begins to grow outside the uterus and can spread to other parts of the body where it continues to grow and tries to shed like a normal endometrium, however it can’t and becomes trapped. This leads to pain and the development of scar tissue and adhesions.
Endometriosis hurts. It causes the kind of cramps that feel like someone is stabbing your uterus with a fork over and over until your legs feel numb down to your toes. I remember in high school, my mom would sometimes find me crying in the middle of the night, unable to sleep because my cramps were so bad. Of course nobody really knew or talked about endo back then, so she just told me that was a normal part of having periods.
It’s not normal.
When I was diagnosed, I had never even heard of the disease. In fact, WordPress seems to have only recently stopped trying to tell me it is not even a word. When I wrote my IVF blog several years ago, every time I wrote “endometriosis” the spell checker would insist it was wrong.
Unfortunately the only way to absolutely know if you have it is through a surgery called laparoscopy. This is where they make a small incision in your abdomen and use a laparoscope to explore the area and take photos. The laparoscope is a long, thin tube with a high-intensity light and high-resolution camera at the front. After my surgery, I was presented with some nice photos of my internal organs with big black blobs on them. The black blobs were endometriosis.
During my surgery, the doctor was able to laser out the invading tissue. This is not a cure, but it can help with pain. Endo is not curable and it will continue to grow back, though it usually grows at a slow pace. I found that the surgery did help lessen the intensity of my cramps, but it did not help my fertility issues.
With my dreaded “advanced maternal age” and years of undiagnosed endometriosis, my egg reserve was so weak that even pumping me full of fertility hormones only resulted in one egg. Most women going through fertility treatment make a lot more, sometimes more than ten at a time. I had to work really hard just to make one. They kept upping the meds until I was doing three shots in my stomach a night for more than a week. In many cases they would have cancelled the IVF cycle because I only had one follicle and one chance for an egg. But they told me honestly that I probably wasn’t going to do better than that, so we went for it. That egg is now about to turn four years old and will always be my little miracle.
If I had been diagnosed sooner, I may have decided to start a family sooner since I would have known the challenge I’d be up against. I would have known I wasn’t just having “bad cramps” and that there was a reason I was in such intense pain every month.
Now that I’m in my early 40s and have had the surgery and a baby, the pain is not as prolonged as it used to be. I have about 24 hours of cramps that take your breath away and then they mellow out to a dull ache. But it’s still there, and it could get worse. The good news is that endo is finally coming out of the dark and people are talking about it and more aware of it now. Hopefully events like Endometriosis Awareness Week will encourage other women to share their stories. Endo is a painful condition that affects over 150 million women worldwide and can have a devastating effect on their quality of life if left undiagnosed and untreated.
If you have these symptoms, talk to your doctor:
The cause of endometriosis is still not known, though they think it is possibly hereditary. Hopefully through events like this that increase awareness, more studies will be dedicated to diagnosing and treating this often overlooked and painful condition.
If you have endometriosis, please consider sharing your story too!
I learn so much from you Candy. Well done for creating awareness
Thank you 🙂
I had a lot of pain from endometriosis in my early twenties. I had a laparoscopy and my provider called it a “minor” case, but continued to have pain afterwards. The doctor gave me two options, either get pregnant or have monthly depo lupron shots for 9 months to artificially put my body into menopause and get rid of the endometriosis. I was NOT ready for the first option so I took the shots. I could only take it for 6 months because it was so brutal. I felt awful and had horrible hot flashes (sooo not looking forward to menopause again)… I was afraid I would have trouble getting pregnant due to the endometriosis and “advanced maternal age” but didn’t have any issues luckily.
Thank you for talking about your experience and spreading awareness. It is a topic that isn’t spoken about enough and has symptoms that aren’t always taken seriously by doctors, males especially.
Oh wow, that does sound brutal! I keep hearing so many different stories about what women have gone through after being diagnosed. I’m glad it’s being discussed more now. Hopefully there will be more research put towards finding a decent way to help women without recommending forced menopause or a hysterectomy.
This is so well written. I’m not nearly as articulate as you are when describing the beast that is endo but it’s so important that we help people understand this isn’t normal pain! I’ll never forget how frustrating it was to lay there with cramps for the first 2-3 days of every cycle that were every bit as painful as labor pains – only to be told it was normal and I had a low pain threshold. This went on from the age of 13-21 when I finally had a lap. Unfortunately, it didn’t do much for the pain in my case. Pregnancy seemed to help. 😦 Would you mind if I reblog this post on my blog with credit to you? If not, that’s ok.
I would love if you reblogged it. It’s all about getting the word out! And thank you. It felt kind of funny posting about my period but not enough people know what it really is and what it’s like. My mom thought I had an STD when I first told her!
I’m so happy for you, and your little miracle. I have now made the decision to start writing my story, if not just for me, but just in case it reaches out to someone. I’ve not had children yet so I’m just hoping and preying everything’s hunky dorey in the fertility department. It’s fantastic that endometriosis is now starting to slowly become more recognised as it does affect so many!
I’m glad it’s being talked about now too! I was diagnosed 7 years ago and had never heard of it.