Living with Endometriosis

We are silent sufferers.  The disease we have mutes us.  We dare not complain.  We hardly know if we have a real disease.  We start believing that it might just be in our heads, or we’re just doing that ‘woman thing’.  Sympathy and understanding pours out only for the loud diseases, the ones everybody know about, the ones that get all the air time.  It’s time for awareness, and for our voices to be heard.  It’s time to turn from silent sufferers into Endo Warriors.

No, you are not crazy.  No, it’s not all in your head.  Endometriosis is real, and the suffering from it is real.  Endometriosis is a disease in which the cells that form the lining of your uterus (endometrium) are elsewhere in your body, as if they are rebelling.  Instead of being only inside your uterus, like they’re supposed to be, these rebellious endometrial cells can be found almost anywhere else in the body, including the ovaries, bladder, or bowel, or other strange places.  Even though it can seem like a strange condition, endometriosis is no stranger to the gynecologist’s clinic: it affects 6-10% of women of reproductive age, with a prevalence of 20-50% in infertile women.  So, if you have it, you’re not alone.


Having cells that are not where they’re supposed to be generally causes problems in the body.  In the context of endometriosis, the problems commonly center on a woman’s menstrual cycle, because the rebellious cells, like normal endometrial cells, are influenced by levels of the female hormones, estrogen and progesterone.  That is why painful and heavy periods are common symptoms of endometriosis.  Other symptoms can come about simply because the cells are in the wrong place, causing inflammation to the area and damage to nerve cells nearby, resulting in things like abdominal or pelvic pain, painful sex (dyspareunia), pain during urination, and constipation.  These symptoms can be debilitating and isolating, especially when no one around you understands the disease.  But don’t be too hard on yourself or those around you, because not even the experts fully understand endometriosis.  No one even knows how we get it.  Sure, there are theories, the most popular one being “retrograde menstruation” (instead of flowing down and out like during a normal period, the endometrial cells somehow went backwards, and further into the body), but it’s still only just a theory.


You may hear or read that you can’t have babies with endometriosis.  It is true that endometriosis creates a ‘hostile environment’ in the pelvis (uterus and surrounding areas), due to the inflammatory markers involved (chemicals made in your body that do damage during the process of inflammation), which can make fertilization or conception more difficult; the term doctors use is sub-fertile, which is different from infertile.  Sub-fertile does not mean that having children is completely impossible.  Yes, some women can become infertile from the disease, and others may require reproductive technology (like in vitro fertilization), but the key is to remember that no one has a crystal ball.  No one can tell you for sure that you can’t have kids.  The only way to know is to try.


The definitive (certain) diagnosis of endometriosis is only through surgery, where the surgeon takes a sample of the endometrial implants (rebellious cells in the wrong place), and the pathologist looks at it under a microscope to confirm.   But there are ways to help you with your symptoms, even without waiting for surgery.  Your healthcare provider can start treating you without a definitive diagnosis if the suspicion for endometriosis is high.  You would often start with medication, anywhere from birth control pills, MIRENA (intra uterine device), a hormone shot, or antinflamatory medication such as Motrin.   For those that don’t respond to medication surgery would be the next step.


Information is power.  Remember, you are an Endo Warrior, and you are not alone.  The key is to be informed and seek help from your health care provider.  You can fight back against the disease by being well informed, and by having your voice heard.


Until next time I’m Dr. Kendra, Your OB/GYN next door.