Monday, June 1, 2015

Since We Can't Avoid You...Hello, Endometriosis!

Endometriosis seems to be a topic that I can't get around discussing as it's a huge contributor to a number of infertility issues as well as chronic pelvic pain issues in women.  Not to mention how living with this disease, and not receiving proper medical care has mentally scarred a number of women, and ruined a number of marriages, relationships and career opportunities.  Endometriosis takes its name from one of the layers of the uterus named the "endometrium".  The endometrium along with the myometrium, and the perimetrium make up the wall of the uterus.

The Layers of the Uterus Wall.  (www.urologyhealth.org, 2014)

The three layers combined creates a thick wall where the:
  • Endometrium - is the inner mucosal layer, and is covered with columnar epithelium and contains abundant tubular glands.
Columnar Epithelium Shape of the Endometrium. (www.occc.edu)
Tubular Glands Shape of the Endometrium.  (www.flylib.com)
  • Myometrium - is the very thick, middle, muscular layer that consists of bundles of smooth muscle fibers in longitudinal, circular, and spiral patterns and is interlaced with connective tissues.
Myometrium View Under a Microscope. (www.occc.org)
  • Perimetrium - consists of an outer serosal layer, which covers the body of the uterus and part of the cervix.
Microscopic View of Uterus Layers.  (http://legacy.owensboro.kctcs.edu/)

Each layer of the uterus wall has its own responsibilities to fulfill during our monthly menstrual cycles.  For example, during menses (bleeding) the endometrial tissue sloughs off for excretion when a fertilized egg is not implanted into the uterus lining.  Next, a new phase of the menstrual cycle begins when the endometrial layer grows thicker, and the endometrial blood vessels and secreting glands develop in preparation for the implantation of a fertilized egg.  When a fertilized egg fails to implant, the endometrium degenerates and sloughs off as menses (bleeding) in order to start the menstrual cycle all over again (Gould & Dyer, 2011, pp. 622-623).  This process seems pretty straight forward, until somehow the endometrial tissue becomes displaced or migrates to other body parts, where it makes its new home and binds to internal body organs other than the uterus!  The presence of endometrial tissue outside of the uterus on structures such as the ovaries, ligaments, or colon is classified as "endometriosis".  The most common areas where endometriosis is found are:

  • The fallopian tubes,
  • Ligaments that support the uterus,
  • The internal area between the vagina and the rectum,
  • Outer surface of the uterus, and
  • In the lining of the pelvic cavity (www.hopkinsmedicine.org)
Occasionally endometrial implants can also be found on:
  • intestines,
  • rectum,
  • bladder,
  • vagina,
  • cervix,
  • vulva, and
  • abdominal surgery scars (www.hopkinsmedicine.org).

I think we would be able to handle having an extra patch or two of tissue located on or near internal organs as long as the tissue didn't interfere with our bodies functions.  However, this isn't just any tissue it's endometrial tissue that has a primary function to grow/proliferate, become thick and nutrient filled in order to support and nourish a fertilized egg.  And since we are dealing with reproductive organ tissue...hormones dictate the behavior of this endometrial tissue.  The interesting part is that, our hormones will continue to cycle through their balancing act (menstrual cycle) every month, and since our menstrual cycle hormones dictate the proliferation of the endometrial tissue...it will continue to proliferate and slough off REGARDLESS of its location.  So, in other words...no matter which part of our body the endometrial tissue decides to use for implantation, when our hormones start their balancing dance the misplaced endometrial tissue will grow during certain stages of our menstrual cycle, and will ultimately degenerate, shed, and bleed.

The Process of the Endometrium Changing According to Menstrual Cycle Hormones. (www.aviva.co.uk)

The Process of the Endometrium Changing According to Menstrual Cycle Hormones. (www.hopkinsmedicine.org)

The problem with this is that our uterus is made to accommodate the proliferation of the endometrium, and our vagina is made to accommodate the excretion of the sloughing and bleeding endometrium layer.  BUT...no other organ or body cavity is built to handle these demands of the endometrial tissue.  So when the endometrial tissue is displaced or migrates, there is no place for the shedding and bleeding to exit the body.  Therefore, the stagnant blood will begin to irritate the tissues surrounding it, causing local inflammation and pain.  This inflammation and pain will occur every month, with every menstrual cycle hormone change leading to a build up of fibrous tissues in the areas of the displaced endometrial tissue with results that may play out as seen below.

Endometriosis Causing Infertility. (Gould & Dyer, 2011, pp. 626)


What Causes the Migration of Endometrial Tissue
Research has yet to prove what causes the endometrial tissue to become displaced.  However there are a number of theories, such as:
  • retrograde flow of endometrial cells from the uterine cavity, through the Fallopian tubes, into the pelvic cavity during menstruation deposits viable tissue, which implant on the peritoneal surface, but to debunk this theory 90% of women have retrograde flow during menses but only 0.5 to 5% of reproductive age women develop endometriosis (Child & Tan, 2001, p. 1736), another theory is that
  • endometrial tissue can be transported to distant sites via lymphatic and vascular channels, which explains rare cases of extra-abdominal endometriosis, and newer research proposes that the 
  • concentrations of macrophages, leptin, tumor necrosis factor-α , and interleukin-6 often are higher in the abdominal fluid of women with endometriosis, which may add to the development of displaced endometrial tissue (Schrager, Falleroni, & Edgoose, 2013, pp. 107-108).


The Symptoms of Endometriosis
This disease is very interesting in that some women can experience debilitating pain, while others can be asymptomatic.  In other words, the amount of pain or number of symptoms a woman may experience are not indicative of the severity of the disease.

The Most Common Symptoms of Endometriosis.  (www.hopkinsmedicine.org, 2015)

I find the list of symptoms above really interesting because, some of them are symptoms we have been taught to accept as "normal" menstruation pain.  So, I can only imagine the difficulties women with endometriosis must endure in order to have family and/or medical professionals "hear" their valid complaints.  In fact, receiving effective medical care for endometriosis is suspected to be one of the reasons for girls and/or women not getting medical care in a timely fashion.  It has been reported that most women experience their initial symptoms between the ages of 10-16 years of age, and due to experienced doctors not believing their symptoms, in addition to their parents being unsympathetic, leads women to experience symptoms for close to 4 years before seeking medical attention (Cox, Henderson, Anderson, Cagliarini, & Ski, 2003, p. 5).

Why Women Don't Get Help for Endometriosis.  (Cox, Henderson, Anderson, Cagliarini, & Ski, 2003, p. 5)

Living with endometriosis can be a very difficult path, and at times leaving women feeling hopeless and alone.  Sometime physical symptoms of endometriosis are attributed to "being a woman" and may not be recognized as being out of the ordinary (Denny, Women’s experience of endometriosis Elaine, 2003, p. 644).  Having endometriosis affects the lives of women in a number of ways.

Affects of Endometriosis.  (Cox, Henderson, Anderson, Cagliarini, & Ski, 2003, p. 5)

The Significance of Endometriosis
  • Endometriosis is the second most common gynecological condition, affecting approximately 10% of women during their menstruating years,
  • It is one of the leading causes of infertility in women over the age of 25, and
  • It is believed that close to 30%-40% of infertile women have some degree of endometriosis 
    (Cox, Henderson, Anderson, Cagliarini, & Ski, 2003, p. 2).
  • Studies have indicated that approximately 20% of women will have a recurrence of their symptoms of endometriosis within 12 months of being treated, regardless of the treatment type, and 50% will have a recurrence within 5 years 
    (Cox, Henderson, Anderson, Cagliarini, & Ski, 2003, p. 3-4).
  • It is estimated that 40% of women attending infertility clinics are doing so as a result of endometriosis (Kaatz, Solari-Twadell, Cameron, & Schultz, 2009, p. 221).
  • The length of time from onset of symptoms to diagnosis of endometriosis can be 8 to 11 years (Kaatz, Solari-Twadell, Cameron, & Schultz, 2009, p. 221).
  • In the United States from 1990 to 1998, endometriosis was the third most common gynecologic diagnosis noted in the hospital discharge records of reproductive-age women, 15–44 years (Mao & Anastasi, 2010, p. 110).
  • Endometriosis is a risk factor for the development of severe pelvic infection especially following IVF treatments. Furthermore, pelvic infection in women with endometriosis tends to be more serious and resistant to antibiotic treatment, frequently requiring surgical intervention  
    (Elizur, et al., 2014, p. 164).
  • Women with rectovaginal endometriosis are at high risk of placenta praevia. However, apart
    from placenta praevia, severe forms of endometriosis are not associated with other obstetric complications (Vercellini, Parazzini, Pietropaolo, Cipriani, Frattaruolo, & Fedelea, 2012, p. 1542).
According to a number of studies, general practitioners and/or specialists may not be as up to date or experienced with endometriosis (Cox, Henderson, Anderson, Cagliarini, & Ski, 2003, p. 6).  A number of participants from an endometriosis study reported having the following issues,

Issues Endometriosis Patients Have Experienced with Doctors.  (Cox, Henderson, Anderson, Cagliarini, & Ski, 2003, p. 6)

Diagnosing Endometriosis


Tools for Diagnosing Endometriosis.  (Seth, 2015, p. 9)


Making the Pain and Life Experiences a Reality
For many women it's difficult to put their pain, and discomfort related to endometriosis into words.  Here are a few quotes that stood out to me.

  • "It's either suicide or fight to control the pain"
  • "The pain was a crippling disabling pain. It felt like my insides were coming out of my body at times. My legs used to feel like they were lumps of iron. Pain in my lower back. I only remember feeling pain throughout the month, not often free of it, but it was worse at period time normally the first week"
  • "a gnawing pain that would keep me awake",
  • "crippling disability",
  • "it feels to me like I’m sitting on a knitting needle",
  • "I had my first period when I was about to turn 13. Ah I felt sickly but I wasn’t in pain, the second one I was in pain. And I was in pain the entire time of the period like a whole week and that continued till late 1994 I had glandular fever and from then on I was in pain 24/7 no matter what was happening. And I didn’t get diagnosed until 1999. I had a lap (laparoscopy) and diathermy; I was diagnosed as stage 4. And the operation was a complete failure. I was in more pain after it than before it and that was right from the word goI had another lap with another surgeon, was pain free for about three and a half months and then the pain came back as normal. I was on natural therapies for four months. And was pain free for that time and then all of a sudden I’m in pain again",
  • "They really couldn’t see anything wrong but decided it had to be irritable bowels. We were sitting back in the doctors surgery my husband had come with me and he actually saw an article while we were sitting in the doctors surgery and it was just like out of a magazine I think it could have been – I don’t know what it was, just a magazine and we read it right there and then and then the symptoms, and that’s when we asked and he (the doctor) said oh yeah it could be",
  • "All we can offer you is this the conceptive pill or you get pregnant and breast feed for the next 20 years’. And he was joking and I laughed at the time but I realize afterwards that it’s just not funny. And for a start heaps of women with endo (endometriosis) can’t get pregnant anyway",
  • "You know you go into everything feeling positive so you start taking this drug feeling this is going to be it. You pick a particular surgery and you think right I will do this and it will be better, you wake up and you feel dreadful and you think okay that’s fine and it will pass. After two months you start feeling as bad as you did before and after three months you are as bad as you were before and you think what’s the point of doing it. I hate going under anesthetics, I hate the feeling and yet I put myself through it and nothing works",
  • "… basically all of the doctors just look at you and say ‘we are sorry, but there is no cure’"  
    (Seear, 2009, p. 197).
  • "When it’s at its worst is when the last thing that you remember before you fall asleep is that you’re in pain, and before you’re even aware you are awake, you are aware you’re in pain" (Denny, Women’s experience of endometriosis Elaine, 2003, p. 644).

Is Endometriosis More Prevalent in Certain Ethnicities?
According to research, endometriosis may not be more prevalent in a certain ethnicity, but certain ethnicities may be less likely to report health concerns related to menstruation and pain, as "from an early age, women learned negative images of menstruation, associated with bleeding and pain... the stigmatization of menstruating women as discreditable is associated with concealment and a consequent reluctance to disclose the symptoms of endometriosis" (Denny, Culley, Papadopoulos, & Apenteng, 2011, p. 169).  One participant of Indian descent was reluctant to speak with her doctor about menstruation pain for fear of it reaching her husband and/or in-laws "For example, if my in-laws know or are related to my doctor I would not be physically able to say look this is my problem because they would know. Even though I would hope the doctor would not tell them in my mind I would know that what if they find out" (Denny, Culley, Papadopoulos, & Apenteng, 2011, p. 174).  Pakistani women were embarrassed to discuss their menstrual pain issues with their male doctors "We know lots of girls that just wouldn’t go to the doctor’s and talk about a problem, because it’s so embarrassing, especially if it’s a male doctor. ‘‘I can’t tell a bloke about this’’, and hope the pain will go away" (Denny, Culley, Papadopoulos, & Apenteng, 2011, p. 174).

Caribbean and African ethnicities may seem to have more diagnoses of endometriosis in recent years because older generations were not willing to discuss painful menstrual cycles, or painful sex with health care providers, as it was considered a private subject to them (Denny, Culley, Papadopoulos, & Apenteng, 2011, p. 174).  The manner in which endometriosis was discovered in this ethnicity was through seeking medical help for the possibility of being infertile.  In addition, research has shown that black populations have lower rates of endometriosis and Oriental populations have higher rates than whites (Denny & Mann, 2007, p. 1112).


Know Your Risk
According to a number of sources a few things can place you at risk for developing endometriosis.

Risk Factors for Endometriosis.  (Schrager, Falleroni, & Edgoose, 2013, pp. 108)

Treating Endometriosis
The approach to treating endometriosis is to completely remove or minimize the displaced endometrial tissue.
Options for Treating Endometriosis.  (Seth, 2015, p. 9)

Getting Better
The key to this disease as it is for many other diseases, is to know your body.  We have to be in tune with our bodies in order to properly advocate our needs.

Things to Keep in Mind on Your Path to Wellness.  (Cox, Henderson, Anderson, Cagliarini, & Ski, 2003, pp. 7-8)

Resources for Women with Endometriosis
Connecting with others that may be affected by endometriosis can help with developing an additional support system.  These resources can also assist in establishing awareness of endometriosis.
This is a large amount of information to digest, but educating each other and enabling awareness is one way to start the conversation with health care providers, friends, and family members.  As patients we should always be able to communicate our needs to health care providers without being dismissed, or made to feel as if "it's all in our heads".  I hope this post gives someone that extra push or support to continue their journey for effective health care and pain management.  Feel free to share and comment.  Until next time ;) 

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References

Child, T. J., & Tan, a. S. (2001). Endometriosis Aetiology, Pathogenesis and Treatment. THERAPY IN PRACTICE , 61, 1735-1750.


Cox, H., Henderson, L., Anderson, N., Cagliarini, G., & Ski, C. (2003). Focus group study of endometriosis: Struggle, loss and the medical merry-go-round. International Journal of Nursing Practice , 9, 2-9.

Denny, E. (2003). Women’s experience of endometriosis Elaine. Journal of Advanced Nursing, 46 (6), 641-648.

Denny, E., & Mann, C. H. (2007). A clinical overview of endometriosis: a misunderstood disease. British Journal of Nursing , 16 (18), 1112-1116.

Denny, E., Culley, L., Papadopoulos, I., & Apenteng, P. (2011). From womanhood to endometriosis: findings from focus groups with women from different ethnic groups. Diversity in Health and Care, 8, 167-180.

ELIZUR, S. E., LEBOVITZ, O., WEINTRAUB, A. Y., EISENBERG, V. H., SEIDMAN, D. S., GOLDENBERG, M., et al. (2014). Pelvic inflammatory disease in women with endometriosis is more severe than in those without. Australian and New Zealand Journal of Obstetrics and Gynaecology , 54, 162-165.

Gould, B. E., & Dyer, R. M. (2011). Pathophysiology for the Health Professions. St. Louis, Missouri, USA: Saunders Elsevier.

Huntington, A., & Gilmour, J. A. (2005). A life shaped by pain: women and endometriosis. Journal of Clinical Nursing , 14, 1124-1132.

Kaatz, J., Solari-Twadell, P. A., Cameron, J., & Schultz, R. (2009). Coping With Endometriosis. JOGNN , 39, 220-226.

Mao, A. J., & Anastasi, J. K. (2010). Diagnosis and management of endometriosis: The role of the advanced practice nurse in primary care. Journal of the American Academy of Nurse Practitioners , 22, 109-116.

SCHRAGER, S., FALLERONI, J., & EDGOOSE, J. (2013). Evaluation and Treatment of Endometriosis. American Family Physician , 87 (2), 107-113.

Seear, K. (2009). The third shift: Health, work and expertise among women with endometriosis. Health Sociology Review , 18 (2), 194-206.

Seth, N. (2015, April, May, June). Endometriosis: A Culprit for Chronic Pelvic Pain. New Hampshire Nursing News , 9.

Vercellini, P., Parazzini, F., Pietropaolo, G., Cipriani, S., Frattaruolo, M., & Fedelea, L. (2012, August 20). Pregnancy outcome in women with peritoneal, ovarian and rectovaginal endometriosis: a retrospective cohort study. BJOG , 1538-1542.