What would you want from a App for persistent pelvic pain ?

[PPSN_JudyB]

Just wondering how useful an app for pelvic pain could be ?

What information would you want to collect on it ?

pain severity ( day,time)

location of pain

Pain triggers or spontaneous

fatigue

medication

other approaches

[painisthename]

I think it would be an excellent idea. It would help with diagnosis and be a quick and easy way to provide a diary of events to any health professional. I think it would be good if you could also capture the additional side effects such as mood, heart rate (elevated associated with pain), bladder frequency and bowel changes etc. Also the number attendances to hospital for additional pain relief, pain clinic, GP and Gyne/specialist appointments - almost a personal tracker/diary reminder! It's difficult when your a working career to keep up with not only the number of appointments but keeping a general diary when there is so much to think about. Reminders for when repeat prescriptions are likely to be due would also be beneficial along with a log of medications being taken and previously prescribed meds for any Dr/professional to gauge treatment quickly at a glance. Collectively if someone could evaluate the additional pressure on the NHS in providing support for sufferers, they might invest more in research! Sorry, maybe too many ideas and directions to take?

Let me know if you would like help with building the app, data capture platform and any mechanisms to support this initiative. I think it's an excellent idea.

All the very best of luck getting it off the ground.

[PPSN_JudyB Pelvic Pain Support Netwo in reply to painisthename]

Thanks a lot for your thoughts/comments. Interesting idea combining a diary/reminder function with symptoms along with medication. Thinking about doing a survey on this. I've looked at a couple of apps for pain and like some of the features. One is called FibroMapp , I think it has a reminder function. A feature I liked was that you can add your own information to what's already there. I guess it's also important as to how the information is displayed ( charts etc ) and how useful the format is to patients and health professionals.

Do you have experience in the technical side of things ?

[painisthename in reply to PPSN_JudyB]

I think it would be worth doing a survey to see what elements would be beneficial to the users and also asking if people would be prepared to pay a nominal fee for the app. I have some experience as I work for a managed communications company, but I'm not vastly experienced with apps as a product. I'm sure I could get assistance though and people to point you in the right direction. FibroMapp looks good and could potentially be a platform for your app and a place to start with regards to discussing potential synergies and build. I truly believe conceptually it helps to chart pain in order to understand how to manage it better and tailor life style and medication. If you want to have a chat about how I might be able to help, give me the nod and let me know how to make contact. I would love to help in anyway possible.

[Hidden]

Thats a great idea not just for pelvic pain, any type of pain. I use noom which is a weightloss/lifestyle app. It's main usp is the motivation it provides. It logs food intake, daily going about your life exercise, extra exercise like swimmimg etc, a chart to log your weight. But it also gives daily info sheets, daily tasks (one was simply drink one extra glass of water a day. It also sends a motivation message if you miss a day (friendly and nice). theres a forum to chat with other users and it encourages users to engage with the noom team and each other.

It also does challenges. I did the walking one even though I'd never get anywhere near winning. I did 6000 steps in a week, the winner did 64,000. But it reminded me how important my daily walk is.

I did think something similar would work for pain. Yes, capture all the essential data, but also some motivational things too. So many people with pain shrink further and further from activity, which increases the pain levels. This lowers moods and increases isolation. There was a study done recently that showed students who were happy did 20 - 30% better in exams than those who were worried about it or unhappy. Which explains my "could do alot better" comments from school. I was so nervous before exams.

It could include collaboration with employment agencies, private employment organisations/charities, volunteer associations too. I read so many times that people are failed by their employers because they don't understand pain.

A success forum. I understand when people feel they have no one to turn to, they need to vent their anger, frustration and they do so here but unless they move on from this stage, they will not improve. But how much better for everyone if all they are reading is about peoples successes. It can be anything that is perceived as a sucess or share a moment of calm sitting in the sun, makes you feel good - success in taking your mind off the pain for a few minutes. But the vibe of the forum is positive.

Somewhere to log activity. Go to therapy A. Log what you did, how you felt. Then space to follow up with body reactions, feelings etc. people using aggressive therapy like sports physio, can get caught up in the aftermath pain and think they can't see an improvement (the reaction pain is often worse than the actual pain). But if they can see it reducing in time/severity, they feel more flexible, can do more, have more energy etc it will encourage them to carry on with it. See the bigger picture.

From a medical point of view, collecting data on what therapies work for who will be a huge aid to those prescribing treatment. Obviously there would need to be an opt in clause for people to submit their data and it being used. My main arguement about alternative therapies is that if an aromatherapy massage encourages your body and mind to relax and you feel the benefit of this for a few hours after, then that is worth more than pain killers that don't work and poison your body to anyone with pain.

Safe exercises to do at home. I found a great app that does yoga on a chair. I stopped doing the ones specific to back pain as my balance is not good and a few of them involved standing with feet in different positions, I couldn't hold the pose to do the exercises but they are basically the same exercises done either sitting on a chair or using it for support.

I'll probably think of more things in due course and will add them as they pop into my head.

[PPSN_JudyB Pelvic Pain Support Netwo in reply to Hidden]

Thank you Zanna, will refer to your suggestions in the survey, watch this space !

[sylvieart]

Food and nutricion

Daily exercises

How many water

Receipt for healtyfood

xxx