Today is the 1 year anniversary of my Hysterectomy. 

Little did I know I would wake up not only minus 1 uterus, but also minus a number of Endometriosis lesions that my surgeon found during the procedure (after years of doctors telling me that nothing was wrong with my pelvic organs). It seems SO fitting that this milestone should fall within Endometriosis Awareness Month. The problem is, that at least within this community, the majority of us seem to be “aware” of Endometriosis, but are continuing to face huge challenges receiving a diagnosis and/or treatment for this issue. 

So what is it that we really need to be “aware” of? 

Well, here’s a list of the things I wish I knew earlier:

1. Endometriosis cannot be definitively diagnosed with medical imaging, laparoscopic surgery is the only way a doctor can be sure you do not have this disease. 

2. You do not need to have an irregular cycle to have Endometriosis. (This was a major sticking point as to why doctors would not investigate my concerns further. Despite my periods lasting up to three weeks, my cycle was deemed ” too regular” for Endometriosis because it always started on time.)

3. It is NOT normal for period pain to make you faint, vomit or get diarrhoea. It’s also NOT normal for ovulation to be painful or for your menstrual cramps to start as soon as the egg passes (or a significant amount of time before the bleeding begins). Passing enormous blood clots that make you see stars isn’t normal either 🙃

4. While there is no cure for Endometriosis, there are medications, supplements, hormonal treatments and both minor and major surgeries which may help ease your symptoms. Your doctor should give you a comprehensive view of your options and should not insist on one specific course of action if it is not working for you. 

5. You do NOT have to stay on a hormonal treatment (or any medication) that is making you feel depressed or anxious just because a medical professional has said you need more time to “adjust.” Your mental wellbeing and safety is more important. 

6. Painful sex is a common problem for Endometriosis patients. Pelvic floor therapy can help rehabilitate tight, spasming muscles that are under constant stress from severe menstrual cramps, and therefore help alleviate superficial/muscular pain felt during sex. Medication or surgery may help with the deep pain felt around organs during or after penetrative sex or with pain triggered by external sexual stimulation. 

Do you have Endometriosis? What would you add to this list?