Endometriosis. From what I’ve been reading, it sucks. Big time.
Although I didn’t have a diagnosis of endo with my hysterectomy, it was simply chronic dysmenorrhea probably coding out to chronic pelvic pain, I empathize and relate most to the women suffering with endometriosis regarding the reason I chose to have my surgery. I relate to all women who have had or are deciding to have a hysterectomy, but endo sufferers and survivors strike a special cord in my ❤ … and once upon a time my uterus too.
Common symptoms of endometriosis are pain and infertility. The pain often is worse with the menstrual cycle and is the most common cause of secondary dysmenorrhea. Thankfully my pelvic pain was not a daily or even weekly occurrence, but rather monthly instead. I can’t imagine having daily or intermittent pain throughout an entire month! Okay, yes, I can imagine, but I would have been at my wits end with such a way of life and it’s not something I want to begin to imagine … ever.
Endometriosis, pronounced, “end–o–me–tree–o–sis” can affect [women] of all ages. It is a condition that occurs when tissue similar to the inside lining of the uterus is found outside of its normal location. Endometrial implants can be found on the ovaries, fallopian tubes, and ligaments that support the uterus and tissue covering the bladder and rectum. The most common locations of endometrial implants … are in the cul–de–sac area (behind the uterus), and near the bladder. Endometriosis tissue elsewhere in the body will go through the same process of thickening and shedding, but it has no way of leaving the body. This leads to pain, swelling and sometimes fertility problems if the fallopian tubes or ovaries are damaged.
One of the best websites in regard to endo, as it’s commonly nicknamed: Young Women’s Health — ENDOMETRIOSIS INFO.
And probably THE BEST site about information on endo: University of Maryland on endometriosis.
There are a few theories as to what causes endo:
Sampson’s Theory: This theory explains that the flow of menstrual blood gets “backed up” causing some of the blood to flow in a reverse direction. This process causes blood containing endometrial tissue to attach to surfaces outside of the uterus. Meyer’s Theory: This theory proposes that specific cells called “metaplastic cells” change into endometrial cells and are actually present at birth. Vascular Theory: This theory suggests that the endometrial tissue “travels” through the body via blood vessels. It then reaches various tissues, implants, and then grows, causing pain.
MORE theories on causes of endo (<3 the UK spellings): UK on causes of endometriosis.
The Endometriosis Foundation of America states:
A common myth about endometriosis is that the more endometrial cells accumulated in the body outside of the uterine cavity, the more pain it causes for the woman. [my emphasis] Any amount of endometriosis can cause pain, and the disease does not need to be advanced to cause significant symptoms. Likewise, higher stage (3 and 4) disease may cause little to no symptoms in some women. Situations vary; moderate growth can trigger intense pain in some women while advanced growth causes less severe pain in others.
The only way to diagnosis endo is to have a procedure called a diagnostic laparoscopy with biopsy. I remember my laparoscopy believing I would finally have an explanation for my monthly pain. I imagined every nook and cranny of my pelvic innards to be riddled with endometriosis. They were not. I had barely a few implants which were easily cauterized. According to WebMD:
During a laparoscopy, the surgeon may remove visible endometrial growths or adhesions. Most women have immediate pain relief. A year after the surgery, though, about 45% of women will have a return of symptoms. [my emphasis] The likelihood of symptoms returning rises over time.
Some of the most important takeaways I got from learning about endo include:
- While there is no cure for endometriosis, you can be treated with surgery and medicine to keep the endometriosis from getting worse and harming your future fertility.
- Chronic pelvic pain is NOT normal. Most young [and menstruating] women have none or mild to moderate menstrual cramps one or two days a month.
- If your pain makes you feel at all disadvantaged compared to other young women or men, this is not normal. Don’t “normalize” your symptoms.
- Endometriosis is physiological – not emotional. Endometriosis is a disease rooted in very real, highly complex hereditary, epigenetic and molecular underpinnings – a truly multi-factorial, physiological disease. Women with endometriosis may struggle with the emotional distress brought on by the unrelenting symptoms of pain and infertility, but such emotions are a result of the impact of the disease – they don’t cause the disease.
- Getting pregnant does NOT cure this disease but may improve symptoms for some women. Some women with endometriosis who have had children continue to have pain.
- Endometriosis is a fairly common but poorly understood disease that is frequently undetected, untreated, and misdiagnosed. Current estimates of those who are affected range from 7 to 10% of all women in their reproductive years.
- Endometriosis is rare in women who are past menopause as this causes estrogen to be dramatically and permanently reduced.
- The goal of the treatment for endometriosis is aimed at relieving pain, controlling the progression of the endometriosis, and preserving fertility for future childbearing.
For many women, endometriosis ceases with menopause. Some women find relief from endometriosis during pregnancy. About one-third of women with mild endometriosis will find that their symptoms resolve on their own. Severe cases of endometriosis may require laparotomy, or open abdominal surgery, to remove growths or a hysterectomy with possible oophorectomy (removal of ovaries). Endometriosis is less likely to come back if your ovaries also are removed. If you keep your ovaries, endometriosis is less likely to come back if endometriosis implants are removed at the same time you have the hysterectomy.
The renowned Dr. Jen Gunter has the following to say about endo:
Do you have biopsy proven endometriosis? Women with endometriosis, especially if they have stage 3 or 4 disease are very likely to improve with surgery. There is even a study saying younger women can keep their ovaries if the disease is optimally removed at the time of hysterectomy. This is important as removing the ovaries under the age of 45 increases a women’s chance of cardiac disease. … If you do have biopsy proven endometriosis but your disease is stage 1/2 it may be worth hormonally suppressing 3 or 4 menstrual cycles (either with birth control pills, norethindrone or medroxyprogesterone, or Lupron) to see how that helps the pain. If it helps a lot then endometriosis is more likely to be a pain generator. … Just keep in mind that not everyone with stage 1/2 endometriosis has pelvic pain (just as not everyone with an abnormal MRI has back pain), so it is really worth while to try to do your best to see if minimal or mild endometriosis is truly the pain generator.
Read the full article here: Dr. Gunter says to ask these 7 questions before hysterectomy for chronic pelvic pain.
Hysterectomy should be considered only as a last resort. While it may eventually bring some pain relief, it is not a cure for endometriosis. In the long run, the sufferer of endometriosis is likely to experience other serious life-long consequences due to the lack of hormone production. Ironically, adhesions and endometrial growths persist even after hysterectomy for some women. Although this treatment has a high success rate, endometriosis recurs for about 15%, a small percentage of women who had a hysterectomy with salpingo-oophorectomy. The recurrence may be due to endometriosis that was not visible or could not be removed at the time of surgery. If doctors cannot remove all of the tissue, women may be treated with a GnRH (gonadotropin releasing hormone) agonist.
One woman’s experience on having a hysterectomy for endometriosis: Endo pain relief AFTER hysterectomy.
One very interesting fact about endo according to research by the Endometriosis Association (EA):
[There is] a startling link between dioxin (TCCD) exposure and the development of endometriosis. Dioxin is a toxic chemical byproduct of pesticide manufacturing, bleached pulp and paper products, and medical and municipal waste incineration. The EA discovered a colony of rhesus monkeys that had developed endometriosis after exposure to dioxin. 79% of the monkeys exposed to dioxin developed endometriosis, and, in addition, the more dioxin exposure, the more severe the endo.
BELOW is a list of blogs of personal experiences to connect with others who are surviving with endo.
If you have endo you’re definitely not alone! 🙂
- Bloomin’ Uterus: About
- The Chick with Endometriosis: Acceptance
- Endostar: My Journey with Endometriosis: About Me
- Endometriosis: My Life with You: About
- Endo Hope.org
- The Endo the World?
- Surviving Endometriosis: Why endo sufferers feel guilty but shouldn’t
- Pelvictim: Living with an invisible illness
- My Endo Journey
- Talk About Periods: Raising awareness about endometriosis