Terrifying pain that comes from nowhere - please let me know if anyone gets this too ?

Has anyone experienced pain 'out of the blue' & it feels like your ovaries are being twisted, along with a sudden bout of sweating and feeling like you are going to faint or something terrible is about to happen to you and then ending up being curled up on the floor in agony for about half an hour? This has happened to me twice and i have been terrified and my doctor just shrugs his shoulders and dismisses what im saying !!

[chickpeajones]

yes. i also have had the 'red hot poker' shooting pain which takes me to my knees instantly.

i think it's just part and parcel of endo and the only advice meds can give is to practice 'pain management' which, as far as i can work out, just keeps us zombie-fied.

i teach and now tend to wear lace up boots so that when it happens i can at least pretend to be sorting out my laces and when i'm able to stand up, make my excuses and curl up somewhere alone.

apparently, prostaglandins are to blame.

[Hidden in reply to chickpeajones]

pain management !!!! i felt like i was in labour the last time my pain was so severe, endo is so unfair and at times frightening

[rainey6373]

I get this at the top of my stomach too, in my rib cage / chest area. I feels like someone has put their fist inside your body and pulls & twists down constantly for a few hours - I have been on Prostap since last November with no pain. It ran out a month ago and had my first bout of it again last week x Hope you ladies get sorted x

[chickpeajones in reply to rainey6373]

i get this and put it down to endo or treatment but turns out to be gallbladder disease. worth getting a scan x

[hillidoos]

hi there, i would ask for a referral to your gyny and have a lap done, you could have cysts on your ovaries, if it is "just" lol endo then there are things that can be done so change your doc and good luck.

[Hidden in reply to hillidoos]

im sick of seeing my gynae and my gp and im truely fed up of havin laps done, they remove my cysts and and then they grow back, im soooo fed up of endo and would like my life back

[Clementine79]

I get this, i have had this several times in the last 15 years. Not every month but now and then out of the blue. It feels like agonising contracting pain, I'm curled in a ball on the floor for about half an hour, sweating so much my clothes are stuck to me. I also get nausea and need to poo urgently. The pain is excruciating. I know it's over when I go very cold and start shivering. Afterwards I feel very weak and shaky. It's awful and frightening, worse still when you aren't at home. Because mine would come at random times rather than every month no doctor would take me seriously and that's why it took so long to get diagnosed. I think it's to do with prostaglandins too. I actually haven't had one for about 18 months after making some dietary changes aimed at reducing prostaglandins. It is endo - have you had a formal diagnosis?

[Hidden in reply to Clementine79]

i could cry with relief knowing that someone else is suffering from this in the same way as i do, however i do not mean that i am pleased that you are suffering, but i have been so deflated as im sure my gp thinks im making it up and when i went to a&e they told me they didnt know the cause ! i am so frustrated and very fed up. i was offically diagnosed with severe endo 2 years ago, i cant believe you mentioned that you know its over when you go cold, thats exactly what happens to me and the urgency to poo is immense but on one occasion i had to try and stop myself going to the toilet as i literally thought i was going to pass out with the pain....so what are prostaglandins ? and what dietary changes have helped you ?

[Clementine79]

I know how frightening it is. How often is it happening to you? There's info on prostaglandins and diet to reduce them here: endo-resolved.com/diet.html. They are basically fatty acids that causes womb contractions and inflammation in the body and us endo ladies have higher amounts of 'bad' ones. However you can reduce your intake of foods that encourage 'bad' ones and eat certain foods that encourage 'good' ones that neutralise the bad ones.

I must emphasise that you don't need to eliminate all the 'things to avoid', just cut down on them. Personally the key for me is that I have cut down on animal fats, especially red meats. All it means is that I don't generally have meat at lunchtime, and I'll have chicken 2-3 nights a week and the rest of the time have fish or vegetarian dinners. Ill have red meat just now and then. I eat generally healthily eg fruit veg whole grains, but I also eat cake and chocolate, just not every day. I also keep some ground flaxseeds in my fridge and sprinkle them on my breakfast cereal every day. I've never found any problem personally with wheat, but I know a lot of endo ladies have benefited from cutting that out. I just switched to wholemeal pasta as its healthier and I have it 1-2 times a week with no problems. I only really have bread on weekends though really. As I say, so far so good for 18 months now. The other thing is have you tried mefenemic acid? I think that's supposed to block the build up of prostaglandins, so you can start taking them a day or two before your period is due to prevent this happening. I didn't really want to do that every month as I was only getting the severe pain now and then, so the diet is better for me. But that's the medical option.

I'd be happy to chat more about it if you need to. Really hope you get it sorted xx

[Clementine79]

Sorry here's the link

endo-resolved.com/diet.html