Teenagers and endometriosis

by Lone Hummelshoj

It is an old myth that teenagers do not get endometriosis. In fact, some research indicate that up to two thirds of women with endometriosis have symptoms before they are 20 years old [1]. This means that symptoms in adolescent girls need to be taken very serious indeed, whilst still recognising that not all menstrual pain symptoms are necessarily due to endometriosis.

If you are a teenager, and you have menstrual pain to the extent that it keeps you away from school, or it prevents you from participating in day-to-day activities, then you should discuss your symptoms with your doctor.

In order to prepare for this first consultation you may want to print off and fill in this form, which can act as an aid: Your initial consulation: questions the doctor may ask you.

It will help you to think about your symptoms: when they occur and how often, and it may help you to make sure that you mention everything you want to talk about during the consultation with your physician (a bit like a “tick list”) – it can be hard to remember everything you wish to discuss, without writing it down before hand, and this form may aid you. It may also help your physician to understand your particular situation better.

For your first consultation, you may also want to bring one of your parents, or a good friend, with you: two sets of ears are better than one, and your companion can help you remember all the information that the physician may give you about your treatment options.

Do not be afraid of asking questions. The physician is there to help you, and s/he will. If there is something you do not understand, or something you feel you need to know more about, then ASK.

The treatment options do not vary that much, whether you are a teenager or a woman in her 20s, 30s, or 40s.

As with any treatment, the key component is what is appropriate for YOUR symptoms, and that you are comfortable with the therapy you are undergoing. You are the one to decide to what extent you are able and willing to deal with any side effects of any treatment!

You need to discuss these options carefully with your physician so that together you can find the best and most effective treatment for your specific symptoms. Do not rush these decisions. Again: never be afraid to ask questions if there is something you are not sure about.

Controversies in the treatment of endometriosis in teenagers

As with any other area of endometriosis, the treatment of teenagers remains controversial, as the discussions below indicate:

Managing endometriosis in teenagers
Dr Charles Miller and Professor Christopher Sutton

The diagnosis and treatment of endometriosis in teenagers
Professor Karl-Werner Schweppe and Professor Hugo Verhoeven

Adolescent endometriosis
Dr Marc Laufer and Mary Lou Ballweg

Listen to, or read, these opinions, and then please, make up your own mind as to what is best for you.

If you need further help, please never hesitate to contact a support group in your country. They are there to help you – and they will!

Reference

1. Ballweg ML. Big picture of endometriosis helps provide guidance on approach to teens: comparative historical data show endo starting younger, is more severe. J Pediatr Adolesc Gynecol 2003;16:S21-26.

Website for teenagers with endometriosis

Endometriosis New Zealand has developed a “funky and hip” new website specifically for teenagers with endometriosis.

The website is fun, interactive, and full of information about endometriosis. Girls with endometriosis tell their stories, and you can hear – directly from the experts – how to deal with the disease. There is even a blog where it is possible to share your own story!

CLICK HERE to get to the website

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