It takes a woman with endo on average 7 years from the time of her first complaints of symptoms to get a diagnosis. During this time, she will likely seek the help of multiple health professionals, be subject to a litany of tests only to hear something along the lines of “it’s just a bad period…it’s just normal cramps…etc”, and visit the ER countless times. When early diagnosis is critical for managing the damage that can be caused by endo, why must we wait so long? The answer is really quite complicated.
Women have been thought to be cursed with painful periods since early biblical times. Eve’s punishment for eating the forbidden fruit was to have periods and the cramping that came along with them. This marks a huge beginning in the attitude that it is a woman’s lot in life to suffer period pains, an attitude that still holds strong to this very day. We see commercials on t.v. talking about period cramps and hocking medicine to help them, or instructing us to have a “happy period”, insinuating that periods are anything but. And yes, for the majority of women with endo, there is really no such thing as a happy period. A happy period would be equivalent to having no period at all.
The attitude of it being normal to suffer from period pain seems to also hold strong in the medical community. Prior to an endo diagnosis, many women may be told that they suffer from primary dysmenorrhea, or quite simply and in words we can all understand, period cramps. This diagnosis does not do justice to us at all. We suffer from more than period cramps. We suffer from period torture, for period cramps do not leave us doubled over in pain and unable to work. They do not make us need to run to the bathroom every 30 minutes to change our feminine products. They do not describe the internal bleeding and damage that is being done inside of us. Too many of us have visited doctors who have told us basically that the pain is in our heads because they can’t find anything wrong on any of the fancy tests that they run, if we’re lucky enough to get any tests for our complaints at all.
Since endo doesn’t regularly show up on medical tests, and there is little commonality between patients as to their symptoms, it makes diagnosing endo difficult. The symptoms also overlap many other gynaecological symptoms such as pelvic inflammatory disease, pelvic congestion, ovarian cysts, PCOS (Polycystic Ovarian Syndrome), and a few others that I’m sure I’m missing but have likely been tested for. Complicating matters is the idea that many of the women who are diagnosed with endo also will be diagnosed with co-existing disorders. For example, it’s not uncommon for a woman with endo to have IBS (Irritable Bowel Syndrome) or an IBD (Inflammatory Bowel Disease such as Crohns or Colitis). Women with endo often suffer from Interstitial Cystitis (IC) which can create pain in the same places as endo does. In the endo community, IC is often referred to as endo’s evil sister.
Next up, there is a notion that you don’t discuss periods. Period. It’s not acceptable in society to talk about the heavy bleeding, the massive cramping, the worries and struggles of endo related infertility. If a disease isn’t talked about, how are others supposed to know that there really is such a thing as this disease? Of course they see us doubled over in pain, but even that too, over time gets labelled as us being overly sensitive to the everyday pains that other women face. You can’t see the endo by looking at us, unless you have endo cells within your skin tissue layers and develop bruising with the cycles, but if you were able to look inside of us (such as the earlier pictures I have posted) you would see a glorious mess. If you were to look inside when we have our period, you would understand why it’s much more than just “typical periods pains”. We are really good at pretending that we’re okay when sometimes, we’re really just wanting to scream out “NO!”. We also get really tired of saying that we feel like crap, so we just begin to say “I’m ok”.
Getting diagnosed properly with endo requires a surgeon who knows what they are looking for and is capable of treating it at the same time. Even within the field of gynaecology there is great variation among the doctors as to their familiarity and ability to treat this disease. Unless a doctor keeps up on the latest research into specific diseases, which typically wouldn’t happen without a doctor having a special interest in the area, then their knowledge base is going to be out of date. There are even some doctors out there who will prescribe endometriosis medications without the person having had the surgery done to confirm its existence in the first place! This practice is plain wrong and dangerous since as previously mentioned, endo symptoms can mimic several other gynaecological issues.
In short, doctors need to remain educated about the diseases that can effect a significant portion of the patients that they see. Unfortunately, it still often ends up to the woman with endometriosis to bring forth new research to their doctor to receive the best medical care.
No comments:
Post a Comment