what is an ‘endo flare up’?

[Kelpiestryder]

Sorry is this seems dumb or obvious but I am awaiting diagnosis and this is all new to me..

So far I’ve ‘normalised’ my symptoms and hadn’t given much thought to endo/adeno..but I think I might of just had a bad ‘flare up’ though I really have no idea…could someone or a few of you share what exactly it means to have a flare up, how you know you’re having one and how long it lasts? Because I have no idea!

For your info of what I experienced to prompt above question…

From Nov started getting worse pain and bowel/gut problems than my usual annoying discomfort . I thought I was ill but looking back now I’m not sure, it was 2months of hell. And my partner wasn’t ill atall!

I had a really light period in nov , completely different to my normal I thought aha things might getting better but December came along and no matter what I ate or didn’t eat I was bloated 24/7 for about 3 weeks. My period beginning dec was again fairly light but I felt like utter shit. Was very pale, nauseas, dizzy which I do get but only mildly, this time they were so much worse and oddly my usual drop to the floor and curl up in a ball Cramps were manageable and again bleeding was fairly light. During the following month along with the bloating I had excruciating side/rib pain, my whole body felt like it was on fire, I was waking up in the night pacing about unable to ease the agony. Felt like a lunatic and that organs were bursting! Ibuprofen sometimes worked, other times didn’t. I did not have a temperature so didn’t think I was ‘ill’ but I did have constant ‘hot flushes’ and waves of nausea. Headaches. Exhaustion. Insomnia. In general my whole body ached more than normal and everything was agonising. Breathing was hard, getting out of bed was nigh impossible! My hip, pelvic and back pain was excruciating, I couldn’t sit on the couch and kept having to lie flat on the floor. I was unhealthily attached to my hot water bottles, one on the front AND one on the back all day everyday! Even taped one to me a few times whilst I went and fed my horse! Random intermittent stabbing pains in various parts of my abdomen, ovaries, back…This was then followed by the worse period of my life in January. I’d never felt so sick, it was odd too, I normally get a week of pre Menzies cramping(among other bad symptoms), spot for a day, bleed 3, and then spot one more day! This one came on very quick, had no pre mensie cramping, again thought great things are getting better…but the night before it was pretty bad, my partner even said this is worse than usual should I be concerned! I then lightly spotted for a day, had a day of passing biiig clots, 3 were larger than I’ve ever seen before between grape-golf ball size, Very black amongst bright red blood. Partner wanted to take me to emergency room when I told him and I was so sick and ill for that entire day only moved to go to the loo!

And then that was it.

Very light spotting for one more day and the since then…all and I mean pretty much all such as bloating, painful bowel movements, pelvic/ back pain/aches, random stabbing etc etc have subsided and almost entirely gone away I’m just exhausted and of course stumped with what the fuck just happened the past 2months?! I’m due again in a week and have no idea what to expect…did I just have an ‘endo flare up’?!

I’m undiagnosed…have suspected something was a miss in regards to my periods ever since I started them 20 years ago but been told all my severe symptoms/ pain/heavy bleeding is normal. All tests are ‘normal’. Hormones are ‘normal’. So I’ve left it… But after educating myself recently I realise this is not normal and endo/adeno could be the real reason for my life long, life altering symptoms!!!

Thanks 🖤💚

[Moon_maiden]

Hi

Definitely not normal. I ignored it for years as well, diagnosed at 51. 🙄. My periods were bad most of the time, times when they wouldn’t be as well and hormones normal. Understand what you are going through.

Absolutely show your post to your GP and get a referral, good chance of Endo or at least there is something going on, could be adeno as well, fibroids (had those as well) important to get a scan, preferably with someone who knows what they are looking for as far as Endo goes, either US or MRI, although neither are foolproof. Don’t let any Dr tell you there is nothing wrong.

A flare to me is the pain getting worse at times. To a degree we learn what is ‘normal’ worse or unusual. If you aren’t sure get a check up in case an ovary has burst or something else entirely like UTI, appendix, gallstones/kidney stones etc. I ended up with gallstones as well that got missed for ages.

Not sure if that helps

Hope you are feeling a bit better now 🙂

[Kelpiestryder in reply to Moon_maiden]

Thanks for reply!

I’ve had scans, funnily enough the week after all of this died down I had my pelvic and TV ultrasound and I thought surely something will come up especially after all this I was certain at least a burst cyst or something but nope..absolutely nothing, ‘perfectly healthy’ the sonographer said! She did reiterate that just because nothing has shown up doesn’t mean I don’t have endo elsewhere but as far as she could tell everything was normal!

Luckily my gp now is very understanding and helping me rule out all sorts of odd things for all my symptoms! Next time I will push for gynae/endo specialist referral despite the clear scans!

I know it says 1 in 10 have endo but I think that numbers bullshit given how often we’re told everything is ‘normal’ and ‘fine’ when clearly it’s not! Will wait for (hopefully) some further replies as still not sure whether I had a flare up or not!!

Hope your doing well and managing pain as much as possible!

💚🖤

[Moon_maiden in reply to Kelpiestryder]

Hate those test results, we are always healthy 🤦‍♀️

It depends on if the sonographer knew what to look for, most don’t. I had loads but didn’t show on either US or MRI. I was diagnosed based on symptoms by gynae at first appointment.

I’d agree with figures, more than one in ten.

Ups and downs, I rely on Oramorph and NSAIDS with a couple of others.

[Daveexaggerate]

Hi, I hope your GP helps you find answers. For me any increased pain, discomfort, change in bleeding for the worse, bloating, fatigue, headaches, nausea and lack of appetite can all happen for a flare up.

My mum and I have suspected endo almost from when I first started having periods and it was always 'normal' when speaking with doctors. In fact male doctors gave me more sympathy than female but I digress.

About 3 years ago they finally sent me to be checked out for endo because my dad said you need to go back this is crazy. And because I said my dad sent me, suddenly I was able to get the help I needed for diagnosis.

It's a bit silly but honestly either mention your bfs concern or take him with you. They might respond better knowing that others are seeing you as 'not ok/ possibly seriously ill'

Best of luck to you x

[RedCat24]

My symptoms are a little similar to you. I suffer extreme pelvic pain with shooting/burning/pressure feeling severe back pain whole body aches and nausea and dizziness and passing out but mine is constant, I lost my job a year ago due to sickness absence from this and havnt returned yet as I'm not well enough to as much as I'd like to. My bowel symptoms are on and off but I do get bloating sometimes and sharp pain when needing to go. I bleed for 6-10 days days 2-5being extremely heavy with blood clots. It's definitely not normal. Is it possible you can ask your GP to refer you to an endometriosis specialist? I had a CT and ultrasounds which detected nothing until I had a MRI which then picked up adhesions and endo. Currently waiting for my next MRI in April as all my symptoms are back plus new since my surgery last year x