My name is Diane, and I am currently developing an app aimed at providing comprehensive support for those living with endometriosis. I know that the average diagnosis time of endometriosis can be 8-10 years in the UK, which is far too long. Our mission is to create a tool that truly addresses your needs and helps with early diagnosis through effective symptom tracking. To achieve this, we need your valuable input. We would love to hear your thoughts on what features and functionalities you would find most helpful. Whether it's symptom tracking, pain management tips, or access to educational resources, your feedback will help shape the app into a resource that makes a real difference in your daily life. I would love to listen to any thoughts on this.
Thank you for your time and support and I hope this is ok to post this on your Forum
Best regards,
Diane
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jophiel888
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Hi, I think pain management tips would be really useful, whether it's prescribed medication, herbal or light exercise, though of course I suppose everyone is different 🙂 Hope that helps
Thank you Kenny I appreciate you taking time to reply. I had planned to have information on pain management so I am.happynto hear that will be useful. I also considered tracking of pain levels as this maybe useful for doctors appointments etcDiane
Period tracking and blood flow would be amazing- as well as symptoms tracking throughout the month.If possible a food diary /tips for foods to try and help pain management or foods to avoid inflammation.
Also- maybe a section where you can write what self care you have done that day because it is so important to have a healthy mind when you live with an invisible disease that slowly attacks you with pain flurries day by day.
I want to include period tracking, pain and positive pain managment results also. I has thought of recording dietry and exercise impacts on the dieases and share learning from positive and negative outcomes. Thank you for your suggestion of a food diary this would be a very comprehensive way to capture information on diet for anyone who was interested.
This is a great initiative! I have only recently been "diagnosed" with what my doctor suspects is endometriosis and I am still doing my own research on the condition. I am also planning on going for an laparoscopy later this year. A symptom tracker (pain, period irregularities and period tracking) be great to have a better overview of my symptoms and help in the definitive diagnosis🙌🏻 as well as maybe educational resources for those that are new to this community/condition.
Hey you know there is an app for this already that I use and is great! It’s called Clue. It was how I first realised something was wrong with my periods- as my cycle kept getting shorter and bleeding time. And I was able to show this to the GP. It also has a symptom tracker which is great. I use the free version which is amazing
My hope would be that by capturing symptoms on the app users could be sign posted at an ealier stage to the Doctors to look for a potential diagnosis. This would in part try to work on reducing the long diagnosis time.
Yes educational resourses would also be useful for newly diagnosed like yourself and even long term sufferers could potentially be provided with any new and uptodate resourses.
this is such a good app you are creating. I would say inflammation foods so recipes/diet to follow, maybe testimonials from people on how they cope/diagnosed etc- success stories.
Great ideas. My suggestion is to add a list of centres for endometriosis, or a link allowing to search for them, and also advice and tips on how to talk to medical professionals when your concerns are dismissed as "period pain".
Hey, an easy way to track symptoms that would produce some kind of descriptive data or graphs to show trends would be really helpful so you can measure if things like medication or changes to diet are working. For me if this was just a virtual diary it would be of no more use than something I could create by myself. The key is to be able to track improvements or declines quantitatively. Also I think it’s important that this isn’t only about tracking period cycles as some people who have endo take medication that stops their period. I haven’t had periods for years and heavy periods was never one of my symptoms before.
Not sure if this is beyond the scope but reviews of the evidence base for things would be incredibly informative too. E.G evidence base for laparoscopy, for medical treatments such as deinogest so that it’s easier to make informed decisions about these things and obtain an understanding of the complexity of treating endo. Accessible video summary’s or bullet pointed lists created by experts objectively reviewing the empirical data would save us trying to make sense of complex scientific papers to properly understand the evidence base.
Education on how to treat endo holistically would be great too as you mentioned, pain management. Consultants often offer laparoscopy or the coil and nothing else, if you’re lucky some medication but completely fail to mention physio therapy and nutrition.
Firstly thank you for your very comprehensive reply, I am most grateful.
I totally agree that all symptoms are tracked, firstly with the hope of earlier diagnosis and secondly better overall management of the disease. My hope would be to help empower users with easy access to this data in a straightforward way and get the best outcome for the individual for this complex condition.
An easy way to track medication as well as pain levels. I’ve tried a couple of apps aimed at chronic disease. If it takes too many clicks to track meds and or symptoms I find I’m less likely to do it. Would be good to have something similar but aimed specifically at endo
Adding lifestyle tracking to help assess what’s helpful and what’s difficult so sleep, exercise, diet variations, work hours etc. Many of these things do have an effect on pain and severity . It’s also useful as a prove point for Drs who might assume we aren’t taking due care of ourselves or believe the effect on life. It’s very much not just about the bleed. As a post menopause sufferer tracking of flares is just as important to achieve treatment as those of you who bleed.
I think it would be great if there was a bit for those who have had everything out but still have endo so we could track and compare with others, it’s extremely hard finding any info on post-hysterectomy endo.
Hi Diane! A brilliant idea and support tool.Fatigue is a major concern for me! Pain management (hip, ankle, lower back right or left pain)has already been mentioned. Any advice on how to cope or improve energy levels would be helpful.
Since some may undergo a hysterectomy as part of the treatment, any advice on care post op would be good.
Fatigue could be another aspect of monitoring. Educational information for fatigue and post op care would be useful. Sharing of the individual experiences could benefit each other too!
hi! This sounds amazing. I saw many people have given very useful feedback already. I could add, a diet and nutrition section to help with symptoms and as well a forum or some mind of tool to connect with other people with endo would be really useful. Thanks for your work on this!
Thank you for your positive feedback!All of your suggestions are very useful. I would hope community would be a big part of this app as connection with others and sharing experiences can be of great benefit.
Information on how endo can affect fertility would be especially useful. Endo is thought to affect up to 50% of women going through IVF, who are often undiagnosed and fall into the 'unexplained infertility' category.
Best of luck with the app, it sounds highly valuable.
Thank you very much for your reply and your good wishes!
I agree that information on Endometriosis and fertility issues would be very useful. Tracking the symptoms of endometriosis and fertility issues could be beneficial for potentially earlier intervention.
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