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 🖤💚
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Kelpiestryder
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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.
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!
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.
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'
Yup I had all those so does seem like mine might of been a flare up of some sort, everything’s really died down again, I’m due on my period in a couple days and so far my pre mensie symptoms have been fairly mild so I have no idea what’s going to happen when it comes!
Annoyingly my mum (nor sister) never had bad periods and both thought I was being over dramatic when I was younger, it’s only know they realise it’s not normal! So it’s really nice to hear your mums been supporting you!
Yep doctors have also taken a little more interest when I say my partners wanted to take me to a&e a couple times! So if I don’t get listened to next time then I’ll considering actually bringing him to the appointment as proof I’m not making this up, which is crazy that we’re made to feel that way!!
Thank you, I hope you get some relief from this dreadful disease! One thing that I think has massively helped me is an anti inflammatory diet after reading the ‘heal endo’ book! I ruddy miss carbs so much but I can definitely feel a reduction in pain frequency and intensity since cutting them out..maybe something you could look into if it’s not seomthing you’ve tried!
Ooh thanks for the tip. I will look into it 😁Yeah no one else in my family has endo symptoms but of course they might have it without the pain so not know.
Yeah I'm lucky mum's been understanding. Glad your family has come around.
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
Oh gosh yours sound a lot worse than mine, I do get all of them except the passing out, though sometime I feel like I might! But in general it’s more of an underlying ache of pain..except the past two months I describe which were aweful!
I lost my job a couple years back from ‘mental illness’…now I look back this was the same time I had my coil out after being on birth control since 13, and it was also the start of all my other symptoms so I’m pretty sure ‘mental illness’ was linked to that! I get so frustrated I can’t work, or do much else really, a lot of my journey I’ve been beating myself up for not being a functioning part of society and can’t for the life of me figure out why but if I do have Endo so much would make sense and I’m now in the viewpoint that if I’d known about it sooner I could of done things very differently to help myself and so actually the doctors negligence the last few years is what’s gotten in this mess of pain and misery! I now won’t go back to work until I understand why my body is the way it is and I’ve had some help in figuring out how to best manage it! It’s shit and I feel like on an endless waitlist, relying on others but I was so so much worse when I was working (I was a postie..utterly exhausting) or at least trying to get back into work so just focusing on the positives in the meantime!
Yes I have a doctors app next week which I’m going to request a gynae/endo referral as besides an ‘autoimmune’ possibility it is literally the last thing left that they can refer me for, everything else has come back normal!
I find it fascinating on ultrasound and ct don’t show anything but mri do..like how sneaky is this disease!!
Thanks again for the reply, seeing other people with the disease and my symptoms is reassuring..up until thought everything was ‘normal’ and that most woman experience all this!!
Yes it's such a misunderstood disease. I had alot of medical gaslighting at the begining amd was discharged from my local gynae because I wouldn't try the coil 🙈 i went bak to GP crying my eyes and got an endo referral, but the wait was massive so I went private and paid for a MRI and laparoscopy, im under a endo nurse now who's scheduled the new mri. It's hard iv got medical anxiety now 😕 because I just expect my symptoms to be told its normal or it's my bowels (which we know our own bodies) people expect we can function as normal and it's not the case. My job was physical too I was a Special Needs Teaching Assistant. Good luck at your appointment i hope you get the referral x
I can totally relate, especially to the changes in bleeding more lightly sometimes, but still feeling shit. I'm sorry you're going through this. I had scans every 2 years for the last six years and they all said there was nothing 'wrong' until the last one where the sonographer (in the hospital rather than the clinic, possibly more experienced) spotted adeno. I've been suffering for 10 years. Having a hysterectomy soon. p.s. random question but how is it looking after a horse with this condition? I could loan a horse, a lifelong dream, but I haven't because I'm in pain most of the time...
Ah ok good to know, the reduction in bleeding had me highly confused because ‘normally’ its an increase in bleed that indicates endo, I was thinking I might me pre-peri-menopausal at 34! Especially seeing as all mine have been bad my entire life! But then the other symptoms have been a lot worse! It’s so frustrating not understanding my body and the changes month to month! I wish I’d learnt all this before so I could of paid more attention to it all but of course were told ‘all looks fine’ and ‘that is normal’ and we believe them because theyre doctors! Someone else mention I sounded like adeno symptoms more than endo on another post I wrote so I will suggest that to my gp too as it’s apparently even harder to detect than endo!
As for the horse..well he’s a blessing and a curse! Me and my partner want to do horse logging together and we talked long and hard about the logistics of it and my ‘condition’ and we decided that instead of getting a horse that’s ready to go and needs constant work we’d get a young one that’s not ready at all and will give me a good couple years to get myself into a better place to work him! This also means he hasn’t come with any predisposed behaviours or habits I have to fight against, he is literally mine to make and we can build an excellent bond! We also decided on a cob…hardy, fairly self maintaining and pretty low energy unlike other more thoroughbred type breeds!
Finally he on grazing livery, so he’s just plonked in a field, the farmer puts hay out daily for all his liveries so if I can’t get down there he won’t starve and no poo pickinf/mucking out involved! So I kind of set myself up to succeed… He’s simultaneously exhausted me but he’s also got me out the house and moving around (gently) on my worst days which is excellent for endo even if we don’t feel like we can!
Sometimes I feel incredibly guilty when I can’t go and see him everyday, I’m dec during the flare I only went down one day a week and only to stare at him for a far to ease my anxiety! Some days I go and see him and just sit with him in the field and enjoy his company and cuddles which is healing in itself! Sure it sucks I can’t ride (yet) but I get the joy of having a horse without putting too much pressure or strain on myself and most importantly we’ve both got plenty of time to get there! In the meantime short walks together are all we can both manage at the moment!
If you can, find a half loan or sharer and be open an honest about your condition! There are great horse owners out there that want their horses to be fussed over! Alternatively find someone with a companion/non ridden horse who needs some fuss/attention! And get your horse fix that way for a bit! Once you’ve managed that you could end up adding one of your own to the herd! Or if you can find a self managing herd get yourself a low maintenance horse like I’ve done! (Best option, far more motivating than a loan horse because it’s your own) Theyre wild creatures and as long as it’s not some poncy thing it can survive outdoors better than you think!
Mine was the best decision I made last year…don’t let the fear of pain or this disease take more from you than it already has! Some of my best days are when I go sit with my boy, even if I’m in pain! It was a childhood dream of mine to have my own horse and I can’t believe I’ve actually got one!
Photo of my little monster toddler for motivation!!
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