An Introduction to Endometriosis and Two Amazing Women

One in ten women suffers from endometriosis according to US statistics. That’s one in ten women who chronically suffer from debilitating pain, exhaustion; anxiety and a variety of other symptoms: cramps, heavy menstrual bleeding or bleeding between periods, infertility, pain following sexual intercourse, painful bowel movements or urination, lower back pain, cysts, constipation, bloating, nausea, fibroid’s, and adhesions. These symptoms may also worsen during menstrual periods. Endometriosis has been medically researched since the 1860s and has remained a silent poorly investigated chronic illness. It is one of the leading causes of infertility and remains largely ignored by medical professionals. This condition warrants dedicated research.

Often time’s medical doctors associate any type of reproductive organ pain merely with “normal” menstrual pain. This pain however is not normal. Endometriosis defined by Medicine Net as “The presence of endometrial-like tissue outside the uterus, is associated with a chronic inflammatory reaction."

Endometriosis can also be defined by “Areas of endometrial tissue found in ectopic locations are called endometrial implants. These lesions are most commonly found on the ovaries, the Fallopian tubes, the surface of the uterus, the bowel, and on the membrane lining of the pelvic cavity (i.e. the peritoneum)”. These lesions can sometimes rupture and also cause scar tissue leading to a higher chance of infertility because of the scarring to the reproductive organs. The cause of rupturing cysts and lesions is still largely unknown however is extremely painful often leading to a high fever, vomiting and abdominal pain. In severe cases organ damage and death can occur.

Few medical studies have been conducted on the impact an alternative lifestyle can make however alternative medical practitioners often recommend reducing estrogen dominant foods. Meat and dairy often carry a great deal of extra hormones due to the use of hormones, steroids and antibiotics used in animal husbandry and can contribute to imbalances over a long period of time. While medical hormonal pills and treatments can sometimes help endo many women opt for a lifestyle change in addition to hormonal treatments.

The Three M's

Amanda Gullace, a 28 year old Toronto woman struggled through years of painful symptoms and anxiety, with incorrect diagnosis like many women. Gullace describes her diagnosis journey as “The three misses- misdiagnosed, misunderstood, and missed moments”. Gullace’s symptoms began at the onset of her menstrual cycles. She experienced debilitating pain, long cycles lasting 10 days with heavy menstruating, and sever nausea, exhaustion, and severe abdominal pain.

In the early undiagnosed years Gullace suffered from her symptoms worsening she said “The bleeding was worse, constant cyst ruptures, trips to the doctor, heavy bleeding, terrible dragging heavy sensations, but this was all said to be ‘normal.' While Gullace is still young she will be going for her third surgery to finally begin removing the endo rather than her previous cauterizing surgery. Dr. Mohamed Bedaiwy states in his article New Developments in the Medical Treatment of Endometriosis published in 2017, that “Current medical therapy does not resolve endometriomas…however; surgical removal negatively affects ovarian reserve.”

If surgery negatively impacts a woman’s fertility why does this treatment continue to be employed? While at this time laparoscopy is considered the best way to properly diagnose doesn’t mean that the medical industry should cease looking for alternative methods and long term resolutions. Surgery can greatly impact the pain and symptom’s allowing a woman to get some control of her life back, however other methods should continue to be investigated.

Out of frustration, Gullace turned to alternative solutions, focusing on her dietary needs and now eats gluten, soy, dairy free and no red meat in combination with an anti-inflammatory diet. That has helped alleviate the symptoms and pain caused by Endo. This is a common dietary change that is encouraged through The Endo Diet a book written by Carolyn Levett.

However Endo is a tricky disease and depending on a person’s food intolerance’s certain suggestions are better and worse on a case by case basis and can be optimised using additional testing. The commonality that most women with Endo share is the shift to an all organic and natural food. Meats, fish and produce are recommended to be organic to reduce the toxic load of chemicals, artificial hormones, antibiotics; GMO and endocrine disrupting steroids are used in food production.

Medical Studies and Outcomes?

Often women with Endo are told their symptoms are normal pain. A study done by Diane E. Hoffmann and Anita J. Tarzian in 2001 in the US, concludes that women are often forced to prove that their pain is genuine and significant enough to warrant medical attention more often than their male counterparts. Because of this pervasive attitude more time is wasted obtaining the same medical attention and women are not treated or diagnosed early enough and often diagnosed improperly resulting in prolonged pain, suffering and ultimately unnecessary infertility. Many women with Endo are misdiagnosed with Irritable Bowel syndrome only to be properly attended to when their health becomes critical.

Many articles and studies demonstrate the same cavalier attitude about this serious issue. Studies reach a certain point and fail to find new insight or treatments. One of the main medications used to treat Endo is Visanne, a progesterone based pill produced by Bayer. It is marketed as a long term treatment yet no long term studies have been done about the effects of prolonged use. Clinical trials indicated that Visanne helped with pain but did not study long term side effects. The majority of studies fall short in this respect, providing inadequate material evidence of the long term benefits and/or collateral damage the medication can have on the body.

Now What

How can something that's been affecting women since 1860 still be so poorly addressed by medical practitioners? Doctors test and medicate but treat each disease issue in isolation from the rest of the body. However holistic medicine states “holistic medicine practitioners believe that the whole person is made up of interdependent parts and if one part is not working properly, all the other parts will be affected.” If you do not treat the entire body and find the route of the problem while supporting ultimate healing there will be no cure. Complementary forms of treatment have been utilising alternative natural medicine combined standard medical treatments with greater success. It seems that perhaps a solution would be to incorporate both traditional medicine and alternative treatments.

With endometriosis becoming an increasingly pervasive issue in society why is it still taking women up to 10 years or more to be properly diagnosed and taken seriously? This problem appears to be worsening rather than improving. We cannot simply allow doctors to tell women that they have a pain management issue and to take anti-inflammatory pain killers. The mental health impact resulting from years of medicating with prescription pain killers has created an additional burgeoning health issue in society.

Alternative Care

Tiffany MacDonald, and Amanda Gullace both suffered for years seeking medical attention only to be turned away. In MacDonald’s case she sought alternative medical attention and was treated by an osteopath. This osteopath saw the pain she was going through and recommended going to a walk-in clinic and demanding a referral. In Canada it is illegal for a doctor to prevent you from seeking a second opinion. By law they must refer you if you’ve asked for it yet most people are unaware of this.

MacDonald struggled through multiple medical doctors denying her pain and concerns. Throughout her 20’s she was denied attention and concern from five or six doctors. All dismissing her problems, her diagnosis took until she was 32 in 2014 after years of pain and was only diagnosed when infertility became an issue. Her issues began similarly to Gullace’ at onset of menstruation around age 13 in a cycle of debilitating pain, nausea, exhaustion and vomiting. All the while she explained her symptoms she was prescribed ibuprofen and told that her pain was normal eventually being “offered something for nerves."

Both of these women noticed symptoms and irregularities early in their lives however they were not diagnosed until years later. The span of time that prevented proper treatment for each of these women can one day cost them their fertility, or in some cases this has already occurred. In order to really make changes it seems we need to begin educating young women earlier about their bodies and how to advocate for themselves. We need to remove the element of guilt about pain and illness from the equation.

While it seems that maintaining a healthy less inflammatory diet can help alleviate pain symptoms it is still not a doctor recommended treatment and no studies have been done properly. Endometriosis affects every woman differently meaning even medications produced to “fix” Endo don’t always work. We need to continue advocating for early diagnosis, the earlier anything is discovered the less time a woman has to spend begging doctors to hear her, or to see her.

~~~Disclaimer, I am not a medical doctor. I am a post graduate journalism student compiling information along with real experiences from women I have spoken with.~~~

References:

http://endometriosisnetwork.com/information/

Bedaiwy, M., Alfaraj, S., Yong, P., & Casper, R. (2017). New developments in the medical treatment of endometriosis. Retrieved February 4, 2017, from http://www.fertstert.org/article/S0015-0282(16)63097-2/fulltext

Hoffmann, D. E., & Tarzian, A. J. (2003). The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain. SSRN Electronic Journal. doi:10.2139/ssrn.383803 https://poseidon01.ssrn.com/delivery.php?ID=632004121085073101114093017069065031054009008003061029091074106104122068026117034014017031032085098092015072125009072074002043069109113001080101004100097103040012040090013031081067092104067067084095087110031092118090110119082026092017085105069&EXT=pdf

Bayer Visanne : http://www.bayer.ca/static/documents/news/en/VISANNE-PM-EN-19JUN2015-182736.pdf

#Endometriosis #ChronicPain #ChronicIllness #EndoWarrior #EarlyDiagnosis