Week 6: Research

This week I’ve primarily been doing some more research on my issue, which is raising awareness of endometriosis in teen girls (15-20) and their mothers. 

I’ve also been working on the third persona as I work toward assessment task 2. With this persona, I’ve decided to go with a mother who has endometriosis, and suspects her daughter may have it. During my research, I’ve noticed this is quite common, actually more than I thought it would be. I feel like this is an important distinction from the previous mother persona because there is predetermined knowledge by the user already, so she may be looking for something more in-depth than a mother with no knowledge of endo would. She would most likely be looking for a guide to doctors and specialists in her area that her daughter can be referred to. As there is frustration and a lack of communication between her and the medical profession, she may seek the advice of other mothers rather than a medical professional, and so her experience with the campaign will be different than that of the other personas.

You can take a look at the persona below:

Persona 3_Mother 2

I’ve also made some notes of this week’s research below:

  • An American Endometriosis registry found that 38% of women started experiencing period pain before 15 years of age
  • A doctor should be consulted if pain:
  • Causes distress or inability to go to school or do other activities (sport, social events, etc.)
  • Occurs outside first 2 days of the period
  • Doesn’t get better when treatments like the pill or painkillers are taken
  • Between 67-73% of adolescents will have endometriosis when diagnostic surgery is performed
  • Women with a relative with endo have a higher chance of getting it themselves
  • Adolescents who start having periods earlier, and have a lower BMI have a higher risk
  • Keeping active rather than resting all day will reduce pelvic muscle spasm and pelvic pain
  • Gentle exercise such as walking or stretching will help
  • Bowel symptoms associated with endo can be relieved by improving diet. Drinking plenty of water, eating diets that contain lots of fibre or a low FODMAP diet can help
  • Finding enjoyable absorbing activities that distract from pain symptoms can improve symptoms
  • Mindfulness meditations can also focus the mind away from pain symptoms
  • Having a hot bath or a hot water bottle can help relax and improve symptoms
  • Acupuncture and alternative therapies can improve pain symptoms
  • Parents can get good info about pelvic pain to help their teen manage endo
  • As well as recognising the effects of pain on your daughter’s thoughts and emotions
  • Help your daughter develop a support team
  • Encourage her to go to school and maintain their social network
  • Shift the focus away from pain
  • Help her develop a plan to manage a bad pain day

Source: Hull L 2017, Adolescent Endometriosis, Endometriosis Australia, viewed 19th April 2017, < https://www.endometriosisaustralia.org/single-post/2017/04/11/Adolescent-Endometriosis>

  • All About Me is a secondary-school education program about endometriosis
  • The program is unique, interactive, fun, and designed to fit with school curriculum
  • 26% of girls aged 16-18 years are absent from school because of distressing symptoms relating to their period
  • Menstrual disorders in teenagers can have a significant physical, emotional and psychological impact on their health and seriously compromise schooling, quality of life and future fertility
  • The session is approximately 40-60 minutes, to fit with school timetable
  • Presenters are professionally trained
  • The program is suitable for students in years 10 -13 (14-18 year olds)
  • ENZ is a charity organisation
  • The program can be made available in any school throughout NZ, and can be transported worldwide with resources and training made available
  • Feedback: “me was cool because I didn’t know the difference between normal and not normal periods”
  • Feedback: “my sister found out she had endometriosis from looking at the pamphlet that was given out”
  • On request, ENZ can provide: ongoing support in schools if required
  • One on one counselling or advice to girls needing more help
  • Presentations to school staff, school nurses and parents
  • Age appropriate activities and workshops through its support networks

Source: NZEndo 2017, All About Me, NZEndo, viewed 18th April 2017, http://www.nzendo.org.nz/how-we-help/all-about-me

  • Mother of 16 year old
  • Desperate to know what to do about daughter’s bad periods
  • Daughter has at least 2 days of school off a month
  • Now having pains at other times
  • Her periods started at 12 and they have always been bad
  • Mother has a diagnosis of endo herself, was a battle to have treated and still suffers
  • Seeing her daughter heading down the same path is very upsetting
  • Have been to two GPs, story seems to be same – take pill and it will settle
  • Have tried that for several years and her periods are regular but the pain and other symptoms are still bad
  • Even when she is not on her period, she sill has awful pain
  • She’s frightened about going to the toilet now because it hurts so badly
  • Doctor has said she probably won’t get into the health system, and even if they do, nothing can be done and surgery never works
  • Mother is sure daughter has endo but doesn’t know what to do
  • No health insurance, can’t afford to see someone privately
  • Daughter spends most of her time at home where she used to be really outgoing and sporty
  • Doctor has put her on anti-depressants
  • Doctor responses below:
  • Try different medications
  • For muscle pain, keep moving and do stretches
  • It can be distressing for women with endo to see their daughters go through some of the same problems
  • There is no correct time to perform the first laparoscopy, but generally more conservative options are tried first in younger girls as this often works
  • If not, then laparoscopy at least gives an answer as to the way forward
  • Improving diet and exercise regimes can also help in this age group
  • All public hospitals should offer this service
  • Organisation response:
  • Endometriosis starts early, ignore it at our own peril
  • Her pain is showing signs of becoming persistent with other challenging symptoms
  • Developing a persistent pain condition at age sixteen must be taken seriously and managed effectively
  • Her symptoms are now affecting her mentally and socially as well as physically and emotionally
  • Recommend using a teenage menstrual diary to keep track of symptoms
  • Change to a GP who understands women’s health and pelvic pain
  • Ask for a referral to a gynaecologist who specialises in endometriosis
  • The letter from the GP must be quite specific and stress how her daughter’s life, well-being and schooling are compromised because of her symptoms
  • You can see a gynaecologist with expertise in treating endometriosis privately, and go on their public list which they can arrange for your daughter
  • Her pain also needs to be managed better
  • Exercise can be hard when miserable and in pain, but a daily walking routine is recommended
  • See if the school can guide and help
  • There may be a sports team she can join
  • Have an appointment with her school and in particular the dean of her year group
  • Falling behind in her studies or assignments can put further pressure on her and the more behind she gets, the worse things can become generally
  • Facebook members’ response:
  • “My doctor spent years telling me I was fine. I knew for a long time something was wrong, and thought it was endo.
  • “I use the public health systems and they made sure I was a psychologist, pain specialist, physio and gynae”
  • “I would recommend getting health insurance for her in case she has problems later in life
  • “You need to get her hormones levelled out so she doesn’t develop more and also to stop the pain”
  • “The continuous pain is concerning, would recommend a specialist gynae
  • “Not all GPs have a good understanding of endo – my previous GP thought I had appendicitis
  • “It is natural that young person would feel depressed when their body is out of control
  • “Talk closely with her about options to manage her feelings, particularly anxiety and self-esteem
  • “Her school guidance counsellor or nurse may be able to help with strategies to keep up with her school work and stay connected with friends
  • “Not getting on to adequate pain management and treatment can lead to psychological trauma
  • “The FODMAP diet can also help with pain relief, as well as regular gentle exercise and activities with a ‘flow’ element where you focus on something else instead of the pain”
  • “You have to shop around and find the doctor that you feel comfortable with and know is going to be of help to you and your daughter
  • “Other natural things that help for me are using heat packs, which sometimes help more than pain meds
  • “Keep active throughout the month with gentle exercise such as walking, yoga and swimming
  • “Support her and try and show her body love and care, even on the days when it is causing her pain”
  • “My advice would be a second opinion
  • “I have also been diagnosed with a gluten and dairy allergy on top of it, which apparently is common with endo patients”

Source: ENZ 2016, Ask ESIG September 2016, NZEndo, viewed 19th April 2017, http://www.nzendo.org.nz/media/65359/ask-esig-september-teenage-daughter.pdf

  • As a girl, Ms. Moncrieff read a magazine article about a disease called endometriosis and it “stuck” with her
  • She struggled through six years of fertility treatments
  • The condition is significantly underdiagnosed, prompting experts to launch an awareness program in South Australian schools
  • Based on a New Zealand model, it will help teenage girls recognise the symptoms earlier and cut the average eight year wait for a diagnosis
  • Evans said helping girls to “recognise when pain isn’t normal is the best way of avoiding the severe problems that endometriosis can cause”
  • Endometriosis NZ CEO Deborah Bush said “if girls were experiencing severe pain as they entered puberty it was important to consider that it could be endometriosis”
  • Delays in diagnosis often occur because symptoms are mistaken for digestive complaints or downplayed as “normal” period pain
  • Tschirpig first experienced symptoms in 2011 aged 15, but was not referred to a specialist until 2016
  • Tschirpig: “I had started to believe that it might be in my head, until I was admitted to hospital two times in a month”
  • O’Brien: “during flare ups” she found it hard to walk or sit without pain

Source: Novak, L. 2017, ‘Endometriosis Program Coming to SA Schools to Help School Girls Recognise Signs of the Painful Condition’, The Advertiser, viewed 18th April 2017, http://www.adelaidenow.com.au/lifestyle/health/endometriosis-program-coming-to-sa-to-help-school-girls-recognise-signs-of-the-painful-condition/news-story/0454b857adf6cb53b73607a1a249e09b?nk=88b75d15bb97442f6edf1f39ee57a974-1492484365

  • 1 in 5 teenage girls suffer pain with periods
  • A study of 1000 Australian girls aged 16-18 found that while 93% had pain of some kind with a period, 21% experienced severe pain, and 26% had missed school with periods, either for pain or a mix of other conditions including heavy bleeding
  • Most common cause of pelvic pain in teenagers is endometriosis
  • Symptoms of endo can begin from a girl’s first menstrual period
  • Dysmenorrhea (period pain) and menorrhagia (heavy bleeding) most common problems
  • Pain which causes distress is never normal
  • Left untreated, these symptoms can severely affect a young woman’s quality of life, relationships with friends and family, schooling and potentially their future fertility
  • Other symptoms can include lower back pain, pain down legs, pelvic muscle pain, headache, irritable bowel, fatigue and pain through the month

Source: Pelvic Pain Foundation 2016, Pelvic Pain in Teens, Pelvic Pain Foundation, viewed 19th April 2017, http://www.pelvicpain.org.au/information/teens/pelvic-pain-teens/

  • It is an old myth that teenagers do not get endometriosis
  • Up to two thirds of women with endometriosis have symptoms before they are 20 years old
  • This means symptoms in teenage girls need to be taken very seriously
  • If you are a teenager and 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
  • Prepare a tick-list for the appointment
  • Note all symptoms, when they occur and how often
  • You may want to bring a friend or family member to the initial consult
  • Do not be afraid of asking questions
  • 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

Source: Hummelshoj L 2017, Teenagers and Endometriosis, Endometriosis.org, viewed 18th April 2017, http://endometriosis.org/resources/articles/teenagers/

  • Having a child with pain means change for all the family and you may feel ill-equipped to handle these changes
  • Get good information about persistent pain so you understand the situation
  • Help your child live as normally as possible. Keep up family routines, encourage your child to do their share and be involved in family activities
  • Help your child develop a good support team around them, including you, your family, their friends, their school and their GP and other health care professionals
  • Shift the focus away from pain. Acknowledge pain is present but also encourage child to engage in helpful pain management strategies such as getting involved in a favourite activity, using humour, music, dance, art, meditation, etc.
  • Recognise the effects persistent pain has on your child’s thoughts and emotions
  • Anxiety and depression are common, sometimes anger or fear, unhelpful thoughts and worrying. All of these can make your child’s pain seem worse
  • Get professional help from GP, psychologist or counsellor to make a difference
  • Encourage your child to go to school every day.
  • Getting behind in school and losing friends can add more stress and cause problems in the long term.
  • You may need to work with your child’s teachers to make a pain management plan for school, which may include giving medication, limited time-out or rest periods, and modified physical activities, as well as sending work home for days your child can’t get to school
  • Don’t’ rely only on medication to manage pain. Sometimes a number of treatments need to be tried before a suitable one or combination is found
  • Discourage resting in bed or on the couch for long periods of the day. It may reduce pain short term but it causes problems with sleeping at night which makes pain harder to manage the next day. If this goes on for a long time, your child will become run down, develop a sleep disorder, and have even more fatigue and pain
  • Help you child learn useful, active ways to manage their pain.
  • Encourage them to do activities they value and enjoy despite being in pain, including a gentle exercise program
  • A physiotherapist or exercise physiologist can help with a graded exercise program
  • Help your child develop a plan for a bad-pain day
  • Planning ahead can help them worry less about pain flare-ups and manage the pain better

Source: Pelvic Pain Foundation of Australia 2016, Tips for Parents of Teens with Pain, Pelvic Pain Foundation of Australia, viewed 19th April 2017, http://www.pelvicpain.org.au/information/teens/tips-parents-teens-pain/

The information above is valuable for a couple of reasons. The first is that there are a few different perspectives provided here – both that of the sufferer herself, and that of the parent. This helps provide context to the issue, and helps me to explore how I can address these issues in my campaign, based on how a teenager feels, and how a mother feels. The second is there are some good examples of educational materials which can inform the content provided in the campaign. The information provided to mothers of teens with endo, for example, approaches it from a different perspective than materials which communicate to a teenager. For example, in the Pelvic Pain Foundation article above, there is an emphasis on encouragement of maintaining routines and establishing a support network for their daughter, whereas the All About Me article emphasises basic education for teens in a setting which is aimed at reaching that age group.

This information will help me going forward in determining how to reach each target market, and will help me develop personas which accurately reflect the girls and women who are in the midst of dealing with endometriosis.


I’ve also conducted an interview with mum, to gain some perspective about how the mother of an endo sufferer might feel:


This has been interesting, because it reveals some qualitative data that might be able to inform the tone of voice used in the campaign. Other research from a similar view point shows some similar views, so this will definitely be able to help inform my design.


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