Endometriosis UK information materials - Please let us know your thoughts

[EndoUK_Comms]

Good evening everyone!

We're planning to review our information materials and would like to ask about your opinion.

Please let us know what kind of information you might find useful. Would it be something about treatment options, pain management or getting a diagnosis? Or maybe something else?

We'd love to hear your thoughts. Please leave a comment here or send us an email to [e-mail].

Thank you!

Monika

Endo UK

[Hidden]

All of the above. I know right now I am working like crazy trying to find things to stop my pain so that I can live my life like I am supposed to!!! If I am to be fanciful, I want a cure and I want it NOW!!!

I think it takes way too long to be diagnosed. Then when we finally are, there are no real treatments to help with the pain. Yes, surgery is great, but only if your surgeon is able to find all the endo! And I can't take some pain killers because I am allergic to them, and the other ones I can take are either not strong enough or too strong in the fact that I can't work and take them.

And finally, I think doctors (especially OBGYN'S) need more schooling on this disease. I am sick and tired of being told it's......All in your head, we don't see anything that causes your pain on this scan......It's in your head, it might be just chronic appendicitis (yeah right, on the LEFT side?!!)........Have you been sexually abused? Because those repressed memories could be manifesting to you now, because we can't see a reason for your pain (yes, one of my many obgyn doctors told me that)........Get a hysterectomy and the pain will stop (current obgyn is telling me this after she is the one that did the surgery to diagnose and clean up the endo she found).........and finally the cure all fall back to : Have a baby, it will cure your endo and life will be good.

[angelyn]

I'm tired of people telling me "I have bad periods too" or I have "pre menstrual dysmorphic disorder" so I know how you feel. I would like some kind of leaflet to give to ppl that explains that endo can grow anywhere, can cause organs to stick together and basically causes internal bleeding as well every month. I want it to say that this isn't just "a bad period". People just switch off and think you are complaining about nothing as soon as you mention it's related to gynae/hormones or periods.

I'm still waiting for my diagnosis in lap but I've already experienced people at work commenting on me taking time off because of "period pain".

1 gynae said to me that my pain isn't cyclical enough and that most people with endo don't have "burning pains" so it's prob not endo. I think my age 27 also led them to dismiss me. So maybe some awareness for gynae that endo can manifest differently for each person.

He'll - even if I turn out not to have endo I'd hate for anyone else to go through same hoops and get same comments. So hopefully this helps someone else.

Thanks

[Mabes]

All the above would be good. It would be helpful if you had (not sure if you do) a printable leaflet to give to family and friends that explains what endo is, how it affects women's lives and so on. Perhaps also one specifically for employers.

I think information about surgery would be very useful as my surgeon and the medical staff gave me no advice on post surgical care... I've had to find it all out for myself. I noticed other women on here going through the same. We're not sure what's normal post surgery and what to expect... When to contact the GP (things that can go wrong post-op), can first period come early or late with mirena after a laparoscopy, how much bleeding should there be, how much pain, when should we expect it to show if the surgery actually helped (I.e. when should the endo pain and surgery pain be gone?) etc.

[nomes7]

All of your suggestions plus an information leaflet for employers and friends. Something along the lines of 'its more than painful periods' to help people understand and stop telling you that they hate cramps too.