Endometriosis. I'm sure we've all heard of it, but what is it, actually? This condition is still largely misunderstood in the medical community, sadly, despite it's prevalence among those who menstruate. 1 in every 10 women have Endometriosis and the average time to receive a proper diagnosis is 7 years so it's about time we learn the truth about this debilitating condition!
What is Endometriosis? Simply put, it means that endometrial-like tissue grows outside of the uterus, causing pain during menstruation. It works by thickening, breaking down, and bleeding with each cycle, but because the tissue has no way of exiting the body, it becomes trapped. The tissue can actually grow in other nearby areas, too, and cause pain any time of the month. How awful is that?! Furthermore, when Endo involves the ovaries, cysts called endometriomas can form. Then, if the surrounding tissue becomes irritated, it can eventually develop scar tissue and adhesions (abnormal bands of fibrous tissue that causes pelvic tissues and organs to stick to each other). Endo can be on the bowel, making bowel movements painful and causing constipation or diarrhea. The locking down of the bowel to the uterus can also cause bloating, back pain, and/or abdominal pain. All of this can lead to painful sex as well, since the pelvic floor is strained. Mega ouch!
Why does Endo occur and how do I know if I'm at risk of getting it? There are many theories on what causes this to take place, but we aren't positive which are correct and it seems like, much how it is with other pelvic problems, it probably just depends on the person. It could be environmental, hereditary, an immune system failure, or hormone related. Risk factors include starting your period young, a family history, being tall, having a short menstrual cycle, high alcohol and caffeine consumption, and falling between the ages of 25 and 40, but even these aren't dead giveaways. Sometimes it just happens and the best you can do is educate yourself and adapt accordingly.
What is Adenomyosis and how it is different? This condition is often mistaken for Endo due to its similar nature, but it actually takes place in a different location. Adenomyosis occurs within the uterus, instead of outside it. The uterine wall then thickens, causing pain and heavy bleeding. Thus, with Adeno you can have an enlarged uterus that you wouldn't have with just Endo. We do know that this condition is more common in older women, as opposed to menstruating ones. However, it's more difficult to diagnose than Endo and hasn't been studied as much. A sonogram, sonohysterography, or MRI can be used to diagnose Adeno. Sadly, it is possible to have both of these conditions at the same time! 42% of women with Adeno also have Endo. :(
What effect will Endo have on my body? Besides the obvious pain, it often causes metrorrhagia (heavy bleeding) and infertility. It's not impossible to conceive for some women, but it depends on your specific situation and it's certainly a struggle for many. There are 4 stages: minimal, mild, moderate, and severe, depending on the number, depth, and size of endometrial implants you have. These can attempt to be assessed with an external physical exam and an ultrasound, but a more invasive test may be necessary.
How do you treat Endo? There is no actual "cure" for this painful condition, however, two surgeries are suggested as a way to remove the troublesome tissue: endometrial ablation through laparoscopy and excision. Laparoscopy is a minimally invasive surgery, which is used to both visualize and diagnose Endometriosis to see if the tissue needs to be removed. Ablation surgery is done one of 6 ways to get rid of the endometrial lining: cryoablation, heated balloon, heated free-flowing fluid, radiofrequency, microwave, or electrosurgery. While in most cases the lining is destroyed, regrowth can occur in normal and abnormal ways. This surgery may work for some, but it is often not thorough enough to complete the job. Unfortunately, surgery can also cause the adhesions described above. However, with excision surgery a surgeon would make small incisions in the abdomen to surgically remove the growths, which is now considered a more effective treatment, but many doctors don't realize this. Similarly, it's important to note that getting a Hysterectomy is not a fix, since the tissue can grow outside of the reproductive organs, and neither is pregnancy, but these are both "solutions" that doctors continue to advertise to their patients.
What are less invasive measures to take? For general pain relief you have many options along the same vein as other pelvic pain problems. Some common ones include pelvic floor physical therapy, a heating pad or warm water bottle, pain meds, a hot bath, stretching, lying down to rest when needed, and eating more foods with isoflavones and indoles. Of course, these aren't going to necessarily bring you to a pain free state, but they can at least lighten the load you have to carry to a more tolerable one. Doctors also recommend hormones, whether through birth control or other means, but these don't always help because they are really aimed at affecting menstruation specifically, which may not be enough if you have a more severe case. People with Endo also tend to have other pelvic pain conditions so you may be treating symptoms from multiple different causes which incite a flare. Roughly 66% of women with Endo also shows signs of Interstitial Cystitis. I added this diagram to show how interlocking these painful disorders can be.
If nothing else, I hope to continue to raise awareness about this issue and spread factual information to help others learn about it, whether you are like me and just curious or someone who is/has suffered with the repercussions of this disorder first hand. Know that you are not alone and there is a strong community of women out there looking to support you. If you need a place to turn, please follow #endometriosisandmore, #pelvichealthguru, and #tightlipped on Instagram.