Hi from a newbie who is "old"

[Hillybilly444]

Hi - so pleased to have found this forum although I wish none of us had to be here.

My personal situation seems to be a little different to the "norm", although I'm beginning to think there s no "norm" with endo from reading others' posts.

I'm 54, still no sign of the menopause. Was on the combined pill from the age of 20 until 48. Never had troublesome periods: painfree, light, regular of course. Never been ill my whole life, never had children either. Since coming off the pill my periods have gradually got heavier and heavier and more and more painful (but bearable). I try to use a Mooncup whenever possible but have to resort to heavy duty tampons and liners a lot.

Then last month I was felled, literally, by the most painful period from hell ever, the pain woke me at 5am. Am sure you've all been there. It was the bathroom floor for me for hours, vomiting, hot and sweating, having to cool myself with a wet flannel, bloated up like a balloon, abdominal cramps that came over me in unbearable waves, rocking myself and crying/groaning with the pain. Bleeding so heavily a tampon would last maybe 2 hours. My partner thought I was dying, I at first thought "food poisoning". After a few hours of this I gradually began to "recover" but felt as if I'd been trampled by an elephant...a bit like when you have the flu - sore, aching, nerve-endings on fire etc.

Several days of research later I came to the conclusion it MUST be endometriosis. I've put myself back on the pill (fortunately had 4 months' supply left over - wish I'd never come off it!) and am now considering my options, including anything "alternative/complementary" (not sure if this forum permits discussion of such things?) to help me cope with this. This month, ultra-severe bloating (can't do trousers up), bad abdominal and lower back pain, aching all over, tender such that even a car journey is horrible (road bumps!) but of course no bleeding or spasmodic cramping.

I live in Ireland - no "free" health care so that, as well as my age and aversion to doctors/hospitals, limits my (conventional) options.

I thought I was fortunate re no menopause yet at my age - now I'm not so sure but I'm "lucky", it seems, that I've come to endo late in life, it's horrible isn't it?

[princessk09]

Hey, welcome to the forum, everyone on here is so friendly and amazing. I can’t really help much as I’m only 20 but I have been through menopause whilst on zoladex but just thought I’d let you know you’re not alone.

I know sometimes the mini pill can cause withdrawal symptoms especially after being on it a long time as the hormones sort of change again. It’s always best to see the doctor just for advice but not many gps know about endo as it’s so under researched and lack of causes.

Changing to a gluten, wheat and dairy free diet can be helpful with the pain and bloating. Anti-inflammatory diet is also a good alternative to easing pain.

I also feel like an elephant is sat on my pelvis which turned out to be endometriosis and cysts which has now returned after surgery. xx

[Hillybilly444 in reply to princessk09]

Thank you for your reply.

Oh my, you are so young to be going through something like this. It must be very tough for you when you still have your whole life in front of you to be having to deal with such a painful condition.

I hope you have a good support network of family and friends who understand.

I am going to have to seriously look into dietary adjustments I think although the very thought fills me with dread.

It seems, from what I've read, that surgery doesn't seem to be even nearly 100% effective and your experience has been this too. What are you next options? Hugs x

[princessk09 in reply to Hillybilly444]

Yeah, it took me a while to accept this will be a life time condition as for years I was ignored by doctors and even my parents weren’t supportive for a while until I was diagnosed. Even now they are sometimes mad when I’m in pain.

My bf is the most supportive person I have but he doesn’t live near me atm but he’s always there for me and I can tell him everything.

The diet is hard at first and does take a while to get used to. I started slow and slowly reduced my intake of processed or frozen foods and have started to have more vegan, gluten, wheat free foods. Some of it tastes horrid but most is nice, it’s just trial and error I guess. Like I haven’t eaten chocolate in over 2 months now.

I use an app called Pinterest where they have loads of healthy gluten free recipes that are easy to make and taste delicious.

My surgery wasn’t very effective as my gynae did a terrible job and didn’t remove everything and I found out yesterday that this has affected my fertility. I haven’t really got many options left as I’ve tried so many painkillers, hormone treatments and surgery. But I’m too young for a hysterectomy xxx