I'm new to this - been doing lots of reading today after receiving a diagnosis of endometriosis. Awaiting specialist input now... it's all a waiting game!
Whilst I know, it's not the worst diagnosis that it could have been - still something to get my head around along with considering my options going forward.
You're right, it's not the worst diagnosis. But take time to come to terms with it and don't feel you must downplay it.
My Mum suspected I had endo from age 11 when my periods started. I grew up knowing I possibly did and with all the pain, bleeding and being dismissed by most health professionals.
When I finally had a lap and was diagnosed, even though I suspected all along, even though it's not terminal and there are treatment options, I was in bits. I almost never cry but I cried a lot, finding out I had an incurable illness that would affect my life forever. But also the relief of finally having some validation, I'm not just a whimp who can't cope with life, the pain is real, not psychosomatic.
Allow yourself time and try to talk about it if you can. Try to educate people close to you in your life. This is one of the major things as many people do not understand what endo is and how it can affect a woman. You will need support at times and it's okay to ask for that.
Yes, it's not terminal, but it doesn't need to be brushed under the carpet. I am lucky now, I have changed my work to part time, am on effective treatment and have people around me who understand. But most don't realise I have endo, it's so well managed so it doesn't need to rule your life 
I hope you manage to get treatment that works for you.
Thanks for your reply Vicki I think one of the hardest things for me is that around a year and a half ago, I had suspected appendicitis. Instead of scanning me, the hospital just decided to go ahead and remove the appendix. I had a complicated recovery with wounds getting infected and reopening. A letter of complaint put in to find out my appendix was fine but that they had found a burst cyst and caused a tear in my bowel.
The last few months I've had similar pain (although I obviously knew it wasn't appendix related this time!) and GP thought it was a simple UTI. It took a few different GPs along with some meds and blood tests later to then have an urgent gynae referral done followed by a MRI scan to find out it is endo...
I'm now wondering if it was there all along and my previous hospital missed it due to not scanning me. Hopefully I'll have some answers once I have my specialist appointment.
Hay Hun im so glad you have been given a diagnosis and no what you are dealing with, there is nothing worse than not knowing! Yes you are right it's not the worst diagnosis out of them all but don't play it down and think it's nothing eather! I have been suffering for over 10years now, I have had laser treatment, every hormone pill and injection available, been on temp menopause injections, told I could never have children, lost my sons twin, nearly lost my son while pregnant and nearly died myself due to all of the long term effects of emdo! But the hardest part is people and even doctors and nurses making out the pain was in my head! I'm not telling you this to scare you I'm telling you to be honest! Don't think it's nothing and it's just abit of pain because what the doctors don't tell you is it's for life and how much strain it puts on you mentally! Take some time to think about your diagnosis and have a look at the other symptoms it causes. It's something you will always have to live with and it's not nothing! everyone's is diff and not everyone suffers this bad but that doesn't mean they haven't had to adjust and deal with having it! Whatever treatment you try some will work and some won't but do what is best for you, there are side effects to them all but it's what works for you. it dosnt have to control your life but it can if you think it's just abit of pain! I no it's not the most positive reply but its an honest 1 and I wish someone had been honest and told me how bad it can get rather than told me the best case! X
Hi Katie, thanks for your reply and being so honest I'm not trying to down play it, I think my head just went to worst case scenario when my CA125 count was high.
I'm glad something has been found so it does go some way to explaining the pain I am in. Now I've just got to wait and see when my appointment with the specialist comes through and where I go next x
Are there any fellow Catamenial Pneumothorax (endo on the lung) women out there?
Hi
New girl...
