Endometriosis- tracking apps??: Hi there, I... - Endometriosis UK

Endometriosis UK

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Endometriosis- tracking apps??

Tls06 profile image
Tls06

Hi there, I was diagnosed with endometriosis when I was about 16 years old so have lived with it for more than half my life already.

In 2006 I had a laparoscopy with helica and a coil was fitted. Was the worst thing ever - was in agony all the time - gp kept telling me it would settle down and could take 6 month to a year to do so. I finally went to a family planning clinic after 9 months where they had a look and said the coil was not inserted properly and literally fell out which accounted for the pain I was in. It took years to get to the point of the laparoscopy and I was just left to deal with the problems as my gp said I should have stuck with the coil. So fast forward a few years and once again I am struggling with pain and anaemia and it is a battle to get the gps to do anything apart from suggesting yet another pain killer and another type of contraception pill.

Finally in 2014 I was referred back to the hospital for thermal ablation due to the excessive bleeding and because I was at this stage demanding a hysterectomy and my gp suggested the thermal ablation as a compromise.

Well a number of years later we are now once again getting symptoms of pain and tearing stabbing pains - and bleeding has started again - so back to the gp who then tells me that she can’t find any reference to endometriosis in my records - I was shocked and let her know this. She doesn’t feel that the symptoms I am having are endometriosis related and has said I need to keep a dairy of how I am feeling. I am really fed up with the thought if having to fight for a referral again when I know where this is heading!

So can anyone recommend a good app that they have used to get as much detail as possible to have at hand for when I have my next appointment

Thanks for reading my very long post xxx

11 Replies

I FEEL YOUR PAIN.

This is awful, I’m so sorry for your horrible situation. I don’t know of any apps- have you looked at the endometriosis website, I thought there was a diary on there? Can you see another GP and request a referral to a BSGE center?

Tls06 profile image
Tls06 in reply to Dapperfly

Hi there, I have used the diary on the endometriosis website previously and found it very helpful - was just looking for something that I could quickly add to instead of having to remember at the end of each day to write it down.

I am thinking of asking for another go but it isn’t always possible at the practice I am at.

What is a BSGE Centre?

Are you actually kidding me? This is ridiculous. Your pain sound like it’s typical of endometriosis. Are you able to go to another GP?

I’ve used the Flutter app to track my symptoms previously. It’s endo-specific so you can track lots of endometriosis-related symptoms, including different types to pain and bowel, digestive and urinary symptoms. I’ve also used Flo to track my periods and pain but that’s more to help people with fertility rather than properly tracking symptoms.

Hope you manage to get some action taken soon.xxx

Tls06 profile image
Tls06 in reply to Victoria81

Thank you for this info - will have a look at both apps and fingers crossed it helps provide enough info.

I use clue, it’s not endo specific but you can track pain, bowel movements and create your own tags so I have a tag for blood clots and when I take the hardcore medications x

Tls06 profile image
Tls06 in reply to cmbxm

Thank you - will have a look into this one.

Lynne_support profile image
Lynne_supportAdministrator

Hello Tls06

I'm sorry you are struggling to get a diagnosis and treatment. You may find this page on our website useful, it includes a link to our pain and symptoms diary. endometriosis-uk.org/visiti...

I hope you get the help you need soon

Best wishes

Lynne - Endometriosis UK

Tls06 profile image
Tls06 in reply to Lynne_support

Thank you - I have used this in the past and it was really helpful in providing evidence to my previous doctor - I was just wondering if there were any apps to make it a bit easier as I do tend to forget to write everything down.

Hi there thanks for this - think I will probably look into a pain app as this is more the issue for me at the moment but flow app also looks useful xx

I have used CatchMyPain to track my pain and other symptoms. It also allows you to draw the location of your pain on a body diagram, which I found very useful. It also has some other free and paid for features that may be useful, e.g. recording your medication. You can email a link to your diary to yourself, and you can download it as a PDF, so you can print it out to show your doctor or you can send them a link to the record. My gynae consultant found it very useful, as I tracked my pain and symptoms over 3 months before my appointment showing the severity and range of symptoms over time, as well as the pain medication I was taking. So, I didn't need to rely on my memory during the appointment and he had a record to add to my patient notes.

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