Lets talk about what endometriosis really is.
I, like many of my endo sisters, try to avoid talking about endometriosis because we would have to first explain periods, the vagina, and other taboo topics. But what if everything was fair game? What if I just put it out there, and let people decide how they want to deal with the information? Lets give it a try!
Endometriosis is a long-ass term for a disease in which women grow tissue much like chicken fat on one, some, or all of their organs. The tissue grows and spreads, acting like a gummy substance that can fuse organs together or cause them to stop working altogether. If the tissue is white it means the gummy substance is still allowing blood flow through the organs it is attached to; if the tissue is black it means it, along with the organs are necrotic (dead) and need to be permanently removed. The common signature for endometriosis is the cyclic pain in parallel with menstrual periods as this tissue takes on the characteristics of your endometrial lining (the lining that nests a fertilized egg if successful; or sheds every month if fertilization was unsuccessful). When you have period cramps – which are much more debilitating than one would expect – the tissue on the other organs also cramps. When the lining of your uterus sheds and bleeds, the tissue on your organs also sheds and bleeds into your internal cavity, with nowhere to go.
Tissue is usually found on the ovaries, rendering them useless or weak, and resulting in very small chances of pregnancy throughout life. In most cases endometrial tissue can be found on or around the bladder and colon making for some nasty symptoms such as bladder infections or constant diarrhea during your period. In rarer cases you can find endometrial tissue on upper organs, the ribs and sometimes on the brain (I happen to be a lucky candidate of endometriosis on my ovaries, bladder, colon, ribs and diaphragm). Two types of surgeries can be done to remove the endometriosis: 1) an ablation which is like shaving the tissue off the organs but leaving the root behind Or 2) an excision which is like plucking the tissue from the root. The latter is much more successful but not a lot of doctors worldwide can perform this. Tissue will always come back; some forms being more aggressive than others, and the average patient will undergo surgery every 3-5 years for life.
Since endometriosis tissue does not show up on any scans, has no reliable marker for screening and can only be diagnosed after years of failed pregnancies, a doctor has very little to go on. In this case a doctor has to listen to the signs of distress from a patient which are: debilitating period pain, heavy and abnormally long periods, diarrhea during their periods, more frequent urination during periods, and all of this occurring on a cyclic basis. If a doctor suspects endometriosis, they will often prescribe birth control to mitigate the pain until the patient is old enough to undergo surgery. The surgery is done laporascopically to 1) confirm that the endometriosis is present, and then 2) at the same time, to remove what the doctor feels comfortable with.
If the endometriosis is on the lungs or diaphragm… good luck. There is (to date) only one doctor in Canada who has this expertise, and (I think) 2 in the US to remove endometriosis from such complicated areas. The pain is then becomes chronic/constant and no longer cyclic. Heavy pain meds/narcotics are prescribed to carry you through until the surgeon can see you (roughly 6 months to a year) and more often then necessary, a hysterectomy is suggested.
That wasnt as bad as I thought. Honesty is the best policy, I always say.
1 in 10 women have endometriosis. Painful periods are not normal. Bleeding through your pants is not ok. If someone you know seems to exhibit these symptoms please encourage them to speak to their doctor in a calm and rational manner to see if anything can be done to help with the pain, at the very least. Encourage them to challenge the healthcare system. And most of all, praise them for listening to their own bodies and knowing when things arent right.
Here is a really good article