I need some technical help: Hi, I have... - Pelvic Pain Suppo...

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I need some technical help

Gardening51 profile image
6 Replies

Hi, I have pudendal neuralgia, and am trying to put this on my site profile under medical conditions that I'm interested in. But the program doesn't recognise pudendal neuralgia and blocks me from going any further. How can this be? And how can I get round it?

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Gardening51 profile image
Gardening51
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6 Replies
Alaine1 profile image
Alaine1Administrator

Hi Gardening51,

I found the same thing when adding my conditions to my profile. For some of them and I by no means added every single medical condition I have despite the fact I take medications daily for them eg asthma. The only way round it was to add a short description introducing myself and then adding my pelvic pain conditions besides endometriosis. If anyone else has any ideas they’ve used it would be great to have your help 😁

Sturat profile image
Sturat in reply to Alaine1

I have the same problem. The system wont recognize many very common ailments and blocks progress from there. The administrators should correct that program deficiency to make it really usable and efficient.

Alaine1 profile image
Alaine1Administrator in reply to Sturat

Unfortunately we have no control over this. The site is simply built by an IT team and various charities use this site to provide support and information for those affected by different medical conditions. I can feed it back via the admin page that myself and other charity administrators belong to and see if they know away around it. The site IT admins will hopefully respond but I’m guessing they might say that it’s not possible to add every single medical condition

edythe profile image
edythe in reply to Alaine1

In view of the fact that we have signed up to a "pelivc pain network" it seems a little strange that there's no way to add anything remotely in this area, as far as I can see. I am left with 0% information on medical conditions just as before!

Alaine1 profile image
Alaine1Administrator in reply to edythe

As I have already said the site is set up so any charity can have their own area within the site but they ( including ourselves) can’t add any technical features including the medical options. This frustrates us but unless the IT team decide to add every single condition which would include mental health conditions there is nothing we can do. I myself couldn’t add all my pelvic pain conditions so had to write them in manually in my bio. This is an option for everyone and allows you to introduce yourself in greater depth to members of each group you join. I hope this helps. I will raise this with the other admins in other charities and also the IT team who are responsible for the IT side of the site. I will up on here when I have further information.

edythe profile image
edythe in reply to Alaine1

Thanks for your commitment and your suggestion.

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