Also, do people get symptoms in between periods?

[Kitty-102]

Initially the specialists said it couldn’t be endo because I don’t just get the symptoms twice a month but throughout the month- anyone else have this?

[weekari]

I've only just been diagnosed and trying to make sense of my symptoms but for me, I'm at my worst the week before my period. I have extreme fatigue and very bad back & hip pain. The first couple of days of my period aren't great but usually fairly manageable. My periods are fairly tight. After about day 3 of my period, I start to pick up and have a few days where I'm at my best. I then get pretty bad ovulation pain & can feel run down then. After that, it seems to build up again. I think it all depends on what's going on hormonally.

[Kitty-102 in reply to weekari]

That’s helpful to know. I do have a few days where I’m feeling ok but a lot of the rest of the time I usually have one symptom or another

[Char411]

My symptoms usually start a week before and last until a week after I’ve finished my period but sometimes I have flare ups and it doesn’t seem cycle related at all. For me stress is a trigger so if that sets it off and inflames all my insides it makes sense it doesn’t only have to be related to my cycle if that makes sense. Also I’ve stopped trying to make sense of this vile disease. Don’t let them tell you what or when it should happen or feel like. You know your own body and although there are textbook symptoms everybody reacts differently x

[Amieer]

Hi there I also have severe pain constantly through the whole month it turns out I have many other things wrong also, Adenomyosis, endo, pcos and bladder and bowel problems but they do try to palm you off unfortunately one size does not fit all so everyone reacts differently.however If your having pain all month then there’s definitely a Cause, be persistent as you know your body. I hVe found this a hard road as no one takes you seriously but be persistent and hopefully they fix you. Good luck

[NW248]

i had symptoms of fatigue and flu like symptoms around the time of ovulation as well, but with symptoms lasting anything from a week to 10 days, that meant me having symptoms most of the month.

[Kitty-102 in reply to NW248]

That’s really interesting. I am also being referred for possible ME as I’m so tired all the time, so that’s interesting to know that’s an endo symptom. I think I (and my gp) was expecting a very clear pattern of only getting issues when I’m on my period, but that doesn’t seem to be the case for most people!

[PandoraPenguin]

Permanent pain here. Starts off as flares which last a short time, then flares which last a few days then permanent low level pain with ridiculous flares.

[Kitty-102 in reply to PandoraPenguin]

Similar to mine in that it is often constantly there, flares up, dies down, gets worse, may even disappear for a few days, comes back etc.

When you’re talking constant pain- are you in agony? I have bloating, tummy issues, general back/hip/groin aches, period pain type feelings throughout the month that can be really intense but aren’t always, but I’m in constant severe pain so not sure what that means?

[Flynn_Maverick]

Hello - sorry to hear your symptoms are constant I used to have a week of symptoms when ovulating, a week’s break, a week of symptoms during my period and then a week’s break again. But after my last operation I was put on the pill which stopped my periods completely but the endo symptoms came back but instead of being cyclical they are now constant. I’m currently off work waiting for my surgery as I have constant nausea, exhaustion and low level pain. The nausea seems to be related to eating and/ or moving and can come on at any time and either be so severe I can’t move off the bathroom floor for a couple of hours or just feeling queasy that goes off after lying down. I’ve got endo on the diaphragm too and that pain has never been related to my menstrual cycle - it has always done it’s own thing haha!! So yes symptoms can be constant I’m afraid - especially the fatigue I think as your body is under a lot of duress when coping with endo xx

[Hazeybabes]

I have endo stage 4, and get pain every day. Ramps up around period and ovulation to where I can’t stand up straight. I think it depends on where the endo is stuck to, mine is everywhere! Waiting on my op to get rid of it all, looking at August / September x never been so excited to be operated on x