A big part of the WTF campaign features women talking about their own experiences with UF – how the symptoms impact their life, how they manage it and so on. Additionally, visitors to the site can take part in a live poll and are encouraged to leave comments based on their experiences.
The idea behind this is to identify any important differences between healthcare professionals and patients – in how they think about, talk about, and manage, UF.
Some of the key findings from the WTF campaign are included alongside this key data gathered from healthcare professionals.
1. Do you feel that for many women there are feelings of stigma and taboo that prevents them talking about issues of female health such as uterine fibroids?
2. What are TWO most common symptoms of uterine fibroids that you encounter?
3. What is the overall impact of uterine fibroid symptoms on a typical patient’s life?
4. In your opinion, is surgery the only long-term treatment option for symptomatic uterine fibroids?
5. In women under 50 undergoing hysterectomy, what do you estimate to be the associated increase risk of Cardiovascular Disease (CVD) in later life?
6. At 8 years post procedure, what recurrence rates would you estimate with laparoscopic and open myomectomy?
7. Which of the following medical treatments have you used for uterine fibroids?
8. Are you aware of a potential new class of treatments for uterine fibroids?
9. Assuming safety was not an issue, what MINIMUM long-term efficacy* would a medical treatment need to demonstrate before you would prescribe it for symptomatic uterine fibroids?
10. If significant clinical outcomes were visible by the first menstruation following the start of treatment, would this be acceptable?
Do you feel that for many women there are feelings of stigma and taboo that prevents them talking about issues of female health such as uterine fibroids?
WTF data: Do you find it difficult to talk about UF with your family and friends?
WTF data: Do you find it difficult to talk about UF with your doctor?
* These women were not formally diagnosed with uterine fibroids
1 https://helloclue.com/articles/culture/top-euphemisms-for-period-by-language
2 Evidation Study. Survey of Americans who had Evidation’s mobile App installed,
92% female respondents (82% premenopausal); Data on file, Myovant Sciences Ltd.
What are TWO most common symptoms of uterine fibroids that you encounter?
WTF data: What are the symptoms women report most often?
“Unable to leave home or sit or sleep with comfort for fear of staining furniture and own clothes… very heavy periods lead to being anaemic and feeling tired.”
“I can’t exercise even walking due to the pressure on my bladder – this in turn has led to weight gain. I feel my health crumbling because of it.”
1 Al-Hendy A et al. Semin Reprod Med 2017;35:473–480.
2 Borah BJ et al. Am J Obstet Gynecol. 2013 October; 209(4): 319.e1–319.e20.
3 Baird DD et al. Am J Obstet Gynecol. 2003 Jan; 188(1):100-7.
4 Marsh EE et al. Semin Reprod Med 2017; 35:560-564.
5 Donnez J & Dolmans MM. Hum Reprod Update 2016; 22(6): 665=686.
What is the overall impact of uterine fibroid symptoms on a typical patient’s life?
WTF data: What women said about how much UF impacted their life
“Not being able to go out without the fear of bleeding.”
“Every aspect. Pain exhaustion heavy bleeding for two years solid takes its toll.”
“…my period lasted for 30 days and it was heavy and it was horrible. I was wearing pads like the size that you get in the hospital after you have a baby and I was so used to that happening at that time… I didn’t call anybody because you know it was like this is normal.” 1 – Patient
“…this is what you go through as a woman… and it was like every month you are going to bleed half to death and then the rest of the time you are almost okay. I just went with that… you know it didn’t kill me so I would just be stronger.”2 – Patient
In your opinion, is surgery the only long-term treatment option for symptomatic uterine fibroids?
In women under 50 undergoing hysterectomy, what do you estimate to be the associated increase risk of Cardiovascular Disease (CVD) in later life?
At 8 years post procedure, what recurrence rates would you estimate with laparoscopic and open myomectomy?
Which of the following medical treatments have you used for uterine fibroids?
“Since progesterone is already implicated in the pathogenesis of [uterine fibroids], using
progestogens [alone] to manage fibroids is like constantly adding fuel to the fire, rendering this
treatment ineffective.” – Donnez J Journal of Clinical Medicine, 20204
Are you aware of a potential new class of treatments for uterine fibroids?
Assuming safety was not an issue, what MINIMUM long-term efficacy* would a medical treatment need to demonstrate before you would prescribe it for symptomatic uterine fibroids?
The majority of HCPs would require a minimum efficacy of between 60-70%
“The anxiety that I feel every month thinking that my period is about to start.”
“Children, sleep, work, having to plan access to toilet prior to going out for a walk.”
“It’s a large fibroid and the pressure on my back gives me a nasty back pain that doesn’t allow long walks or runs or even a busy day of housework.”
“Can’t leave the house because of very heavy bleeding. I am in a lot of pain and take a lot of laxatives.”
“Just every day things like shopping and cleaning, messing about and playing with my children.”
“Heavy periods that last for up to six days a cycle.”
“Tired, mental and physical health, stained bedding, worrying about being out with no toilet access to change pads etc or the timings needed to access toilets, worrying about holiday planning, worrying when out if showing on clothing particularly when feeling a gush, no physical exercise to minimise accidents and slow flow, only wearing dark colours when having a period…..”
“I’m always tired because of anaemia that is cause of UF Unable to exercise, extreme painful periods Lack confidence because of weight gain.”
If significant clinical outcomes were visible by the first menstruation following the start of treatment, would this be acceptable?
Most HCPs would accept a new option if it demonstrated significant clinical outcomes by the first menstruation following treatment
