Just a rant...

[kate6124]

Hi ladies,

I just wanted to see if everyone else feels the same & to have a little rant really haha

I'm 22 years old and before i was diagnosed, i was always told I was too young to have endometriosis and that it must be IBS.

After my first laparoscopy, I was told I have endometriosis and what they did to get rid of it, but was never given a follow up.. Fast forward 18 months, and I had another flare up and yet another laparoscopy, i was told (in Doctors terms, one hour post surgery, so i don't really remember/ understand haha) where it was, how they got rid of it (plus a few adhesion) but again, I've not been given any follow up and i don't really know where to go from here or what i can do to attempt to help it?

I know it is a chronic illness & there is no cure, but it'd be nice to have an understanding of it. I've asked the doctors before and there seems to be such a grey area when it comes to Endometriosis!

I'm just wondering what everyone else's experiences have been with 1. getting diagnosed & 2. post diagnosis?

Thank you for reading & hope to hear your experiences too

[Sparkyxx9386]

Hey,

I have to say I've been quite fortunate in regards to getting my endo diagnosed, however as you mentioned haven't been scheduled any kind of follow up post surgery.

I think the reason behind this is its such a variable disease in that some people will have surgery and treatment and be fine for a long time, for others it's only a few months etc so the only way to really manage it is to approach your GP again when symptoms begin worsen to discuss treatment options such as pain relief or further surgery etc.

Unfortunately it still seems to be an illness that is still little 'known' about and therefore it's a bit of pot luck when it comes to finding a GP that's supportive. I'd definitely say do your research online in regards to what other people have found to help and don't be afraid to make your own follow up with your GP should you feel you need it to discuss any symptoms that you still have or they get worse

Best wishes for your future management though x

[kate6124]

Sorry to hear you've have a rubbish time of it!! You're right though, I feel like we're not being taken seriously because we're early 20s!! I wish it was a more known illness!

[Loulou24]

I too had pain like this in my early twenties and kept on being told it was IBS or colitis for years. It wasn't until the pain got so bad I was started to be taken seriously - I changed GPs and for the first time I was told it could be Endo. I'd had colonoscopies, sigmoidoscopies etc and nothing came up. Try changing GPs or go to a well woman clinic. I hope this helps. You know your own body. Don't get fobbed off like I was. Are you under a BSGE clinic? My first lap I didn't know about these clinics so had it done at the lcoal hospital and I was still groggy when I came round - plus there was no follow up. After joining this group I found out about the BSGE hospitals and asked my GP if I could be seen at my nearest one who have been fab. Good luck x

[Doggiedogmom1973]

hello there,

you're right, its a grey area and there is no quick cure for endometriosis. But i do know you can prevent it two ways:

1.invasive treatment: laparoscopic surgery or surgery

2.non invasive treatment: eating anti-inflammatory foods, exercising, supplements might help (i take: turmeric, fish oil pills, milk thistle, calcium supplement, magnesium); aqua jogging/swimming, QRS101 mat treatment, HBOT treatment, yoga.

i hope this helps, as a Dr's being Dr's doesn't always tell you of the non invasive ways to treat endometriosis. fyi.

i like to stick to Non invasive treatment as best as i possibly can, if then if i that doesn't work, i'll have to go for a surgery.

For me, when i was you like you,.,,,only a couple of years ago....i just wished i did more research on endo back then but everyone is different.............

all the best.