Endometriosis in Teenage Girls & Young Women

Introduction....

It is so important to diagnose endometriosis early in life–catching it early provides the important opportunity to prevent the consequences of the disease’s later stages. However, endometriosis in young women is especially challenging to diagnose because it differs from that of adults. Support, compassionate care, and empathy are all necessary when a young woman is suffering from symptoms of endometriosis, but are not enough. We must do more, including early and accurate diagnosis, education, and early intervention of the early stage lesions in order to halt the progress of the disease. My whole goal in my practice and in the establishment of the Endometriosis Foundation of America is to increase awareness and availability of proper treatment so we can catch this disease in time to limit the damage it does to the body.

For the purpose of clarity on this page, I want to define some terms. I use the word "teenager" to describe a woman between the ages of 13-18, "young woman" for women between approximately 19-23 years old, and adolescents as encompassing both of these age groups. Most girls initially do not ovulate (anovulatory cycle), and therefore their periods are irregular. See the ovulation video clip above as it is relate to period cycle.

Prevalence and symptoms

  • Most women with endometriosis started experiencing symptoms in their teenage years (Nnoaham, 2011)
  • Endometriosis has been found in girls as young as 8 years old (Laufer, 2003)
    • According to an interesting theory, endometriosis may start forming in girls as young as newborns (Brosens, 2013)
  • The most common symptoms in adolescents differ from those of adults, and include:
    • pelvic pain throughout the cycle
    • gastrointestinal disturbance
    • urinary tract symptoms
    • irregular periods (Laufer, 2003)
  • The most common lesions (appearance of clear and red) in adolescents are also the most painful and the most difficult to treat (Laufer, 2003)
  • Endometriosis is present in approximately ⅓ of adolescents with chronic (3-6 months) pelvic pain (Laufer, 2003)
    • This pelvic pain can be cyclic (occurs during the period or ovulation) or acyclic (all month)
  • Endometriosis in adolescents is usually peritoneal, which corresponds with Stage 1 or Stage 2 (out of 4 stages defined by ASRM) (Laufer, 2003) endometriosis
    • Treating with excision surgery in these early stages results in a better outcome (Laufer, 2003)
    • There is no correlation between the stage of endometriosis and the amount of pain a patient experiences (Doyle, 2009)
  • Adolescents with endometriosis exhibit a higher incidence of pain syndromes, mood conditions, and asthma (Smorgick, 2013)
  • Schedule an appointment with a doctor who is familiar with endometriosis
  • A “Q-tip” exam or an external sonogram can be used in place of an internal exam to rule out congenital anomalies of reproductive tract

Evaluation

What Should I Do?

  • Obtain a family history from as far back as possible
    • Have any women in your family had endometriosis, infertility, pelvic surgeries, or any of the symptoms of endometriosis?
  • Keep a journal of your pain (how it feels and its frequency) and your cycle

What Should My Doctor Do?

  • Vaginal exam
  • MRI with contrast
  • Blood tests
  • Urine test

Treatment

DOs:

  • Excision surgery
    • Complete laparoscopic excision of endometriosis lesions reduced the following symptoms in teenage girls. These results did not depend on hormonal suppression
    • Birth control has been shown to reduce post-operative (laparoscopic excision) pain and recurrence rate in some studies
      • Combination estrogen and progestin therapy (Laufer, 2003)
      • Continuous administration (Seracchioli 2010, Laufer, 2003)
    • NSAIDs can be used for pain management (Laufer, 2003)

DON’Ts:

  • Lupron
    • often results in bone density loss and severe side effects (Laufer, 2003)
  • Opiates
    • often result in dependency and addiction
    • analgesic (pain-killing) properties often decrease over prolonged periods of use (decreased efficacy)
    • prolonged use may actually increase the intensity of perceived pain (opioid-induced pain sensitivity) (Ballantyne, 2008; Mao, 2006)

Further reading

  1. Ballantyne, Jane C., and Naomi S. Shin. "Efficacy of opioids for chronic pain: a review of the evidence." The Clinical journal of pain 24.6 (2008): 469-478.

  2. Brosens, Ivo, and Giuseppe Benagiano. "Is neonatal uterine bleeding involved in the pathogenesis of endometriosis as a source of stem cells?." Fertility and sterility 100.3 (2013): 622-623.

  3. Brosens, Ivo, Patrick Puttemans, and Giuseppe Benagiano. "Endometriosis: a life cycle approach?." American journal of obstetrics and gynecology 209.4 (2013): 307-316.

  4. Dovey, Serena, and Joseph Sanfilippo. "Endometriosis and the adolescent." Clinical obstetrics and gynecology 53.2 (2010): 420-428.

  5. Doyle, J. O., S. A. Missmer, and M. R. Laufer. "The effect of combined surgical-medical intervention on the progression of endometriosis in an adolescent and young adult population." Journal of pediatric and adolescent gynecology 22.4 (2009): 257-263.

  6. Laufer, Marc R., Joseph Sanfilippo, and Gillian Rose. "Adolescent endometriosis: diagnosis and treatment approaches." Journal of pediatric and adolescent gynecology 16.3 (2003): S3-S11.

  7. Mao, Jianren. "Opioid-induced abnormal pain sensitivity." Current pain and headache reports 10.1 (2006): 67-70.

  8. Shah, Divya K., and Stacey A. Missmer. "Scientific investigation of endometriosis among adolescents." Journal of pediatric and adolescent gynecology 24.5 (2011): S18-S19.

  9. Smorgick, Noam, et al. "Prevalence of pain syndromes, mood conditions, and asthma in adolescents and young women with endometriosis." Journal of pediatric and adolescent gynecology 26.3 (2013): 171-175.

  10. Yeung Jr, Patrick, et al. "Complete laparoscopic excision of endometriosis in teenagers: is postoperative hormonal suppression necessary?." Fertility and sterility 95.6 (2011): 1909-1912.

  11. Vicino, Mauro, et al. "Endometriosis in young women: the experience of GISE." Journal of pediatric and adolescent gynecology 23.4 (2010): 223-225.

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    I was diagnosed with Endometriosis at 19. I saw several Endometriosis "Specialists" since then, had a few laproscopic surgeries to "remove" the endometriosis and continued to be in pain. I had a hysterectomy in 2012 and was told this would stop the pain once and for all. No such luck! Tired of spending days in bed with a heating pad,…

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