Today is the close of NIAW. I haven't written a specific NIAW blog post in a LONG time, for many reasons...but today I decided to write one.
Dr. Drew recently had a LoveLine episode in which he called endometriosis and IC "garbage bag diagnoses". He did this when a man called in with some concern about his fiancee, and Dr. Drew cut him off before the man could even ask his question. It was a huge reminder to me that many people, even so called doctors, do not understand endometriosis, and don't view it as a real problem. So people of the interwebz, here is my story about living with endometriosis (and PCOS because I have both, and I suspect that Dr. Drew doesn't believe that PCOS is a real disease, either).
From the time I first got my period, I lived in excruciating pain for the few days before, and the first few days during my period. I also got horrible pain during the middle of my cycle. My periods were any where from 7 days to 14 days long, and were extremely heavy. They never came at regular intervals, NEVER. I missed school regularly because I physically could not get out of bed. This pattern continued until I was 18 yrs old and was put on birth control pills.
Once i started taking birth control pills, symptoms improved for several years, but the symptoms were not gone. It took years of experimenting with different birth control pills to finally find one that helped. Periods were still VERY heavy, and still painful, but at least the mid cycle pain was lessened. I still missed class and work because of the pain of cramps, and general pain that went all the way to my knees, my lower back, and into my pelvic region. There was pain during and after sex. I became light headed due to pain and anemia due to heavy periods. In short, it was awful.
By the time I was almost 31 yrs old, I had met the love of my life and we decided to start trying to get pregnant. I did the responsible thing and went to a doctor to get a pre-baby making work up. This was the first time I was diagnosed with PCOS (polycystic ovarian syndrome), and also the first time that endometriosis was ever mentioned as a possibility. Since the time I started seeing a gynecologist, no one had mentioned anything being wrong with me. All previous doctors told me that my symptoms were normal, and that some women just had "worse" periods than others. Hearing PCOS and endometriosis was like a kick to the chest. That doctor also told me that realistically, I would not get pregnant without help. I was not even 31 yrs old yet, I wasn't old....I was broken.
Over the next 5+ years, we went through treatments for infertility...all failed. We tried timed intercourse with infertility meds-both pills & injectables; 5 IUIs with pills & injectables; 1 fresh IVF; and 1 FET. Nothing worked. Before we had IUIs, I had surgery to look at my insides and was diagnosed with stage 4 endometriosis, that was in 2009. I cried. I developed moderate-borderline severe OHSS during one of the IUI cycles. The injectable medications for IVF left me with extra weight, what seems to be a permanent belly pooch, and while i was taking them, a had a bruised stomach, crazy mood swings, and hot flashes.
In 2012, after enduring daily pain for over a year and numerous ruptured ovarian cysts, I had a second laparoscopic surgery. A huge cyst burst during surgery and I lost part of one ovary. The doctor also removed numerous endometrial adhesions, including some around my bowels. After surgery, I was on basic bed rest for almost a week due to pain. It was not something I look forward to dong again, but it WILL be something that I have to go through again...because a year after that surgery, my symptoms came back again. I tried birth control pills, but I couldn't take the weight gain, acne, and migraines. So for now, I eat a low gluten diet (it helps decrease my symptoms), avoid soy (other than the tasty edamame at our fave sushi place), and exercise regularly (love my family at CrossFit Above The Bar). My husband and I have 2 beautiful children (through kinship adoption), 5 large rescue dogs, and 2 crazy cats-my life is full and wonderful....but I still have not come to grips with the fact that I will never have a use for newborn clothes in our house, or experience breast feeding or a pregnant belly.
So Dr. Drew, no-endometriosis is not a garbage bag diagnosis and endometriosis IS pathological. It is an actual disease, with actual consequences, and actual symptoms. It causes real pain and real health issues. For you to say, to millions of listeners, that it is not real, is a lie.
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