Endo pain getting worse towards end of period!

Can someone please tell me why it does that?!😐

I get pain first day of period that lasts throughout period ( which is the usual intense kaleidoscope of endo pains) but when my period stops the pain just rockets sky-high to more unbearable levels that are far worse than period! So i am in that pain for about 4/5 days totalling 10 days (my period is 6/7 days) I don't understand why it does that. I haven't found anything to explain, not even doctors can.

It makes more sense for the pain to stop when period stops! 😣

Does anyone get this? Does anyone know why? Or even help me figure out why?

Thanks!

M 💕

[Chloelouise92]

Hi so I haven’t got a diagnosis of anything yet but possible Endo. Strangely enough I found for a while that my pain intensified during my period but more recently it gets worse just after I’ve come off my period which I’m finding very strange!

I’m in daily pain anyway so wether I just tend to notice it more then I don’t know, I can barely walk most days. A day at work totally takes it out of me and I spend the rest of my evening laid up on my bed but it tends to become worse around that time of the month however the last few months it seems to be just after I’ve come off! Wish I had some help as to why this is but I have no idea! I could understand when you’re on but it does seem to be as I come off the last few months I seem to be worse very strange!

Do you have a diagnosis?

All the best xx

[Hidden in reply to Chloelouise92]

Hello there.

Thanks for replying. I totally understand your pain. Sorry you're going through this too

I was misdiagnosed for 5 years. Went round in circles. I was told adhesions/scar tissue/IBS/ Diverticulitis / Nerve damage/ scar neuroma/Fat necrosis/ Muscle tear/ psychological ( my personal favourite!) Although i accepted that there could be some elements of all the above having had 4 c -sections, I wasn't convinced that its all it was. Until i noticed this lump grow and describing intensity of pain to GP he finally put 2 and 2 together and diagnosed me with Endometriosis. I didn't even know what that was at first. But after research i realised he was right. He said only way to be 100% is to do laparoscopy which he didnt recommend with all my previous surgeries. He referred me for further scans and both he and Private consultant diagnosed Endo based on symptoms and scans.

Anyway, I have no idea what this phenomena is and wait to see if someone can shed any light. I like you think it VERY strange. Even now i am sat with a hot water bottle, just finished my period 2 days ago and i am in excruciating pain and its getting annoying now. Just don't understand why that is.

Thanks anyway

M 💕

[Chloelouise92 in reply to Hidden]

Bless you it’s just so horrible isn’t it! Oh the things you get told over time is laughable isn’t it. Ibs is always a favourite. I had one gp actually say to me well you know some women just have pain and we never get to the bottom of it. Like thanks your really making me feel better right now!!! You know your own body don’t you, even though I’ve doubted myself so many times and I still do sometimes now I just have to keep reminding myself, not it is not normal to be in pain all the time!

Hope you start to feel better soon xx

[Hidden in reply to Chloelouise92]

Oh dear :D... "some women just have pain" is up there with "its psychological!" No.....pain is a reaction to something. You don't just get pain for no reason. What on earth kind of explanation is that?! ><

Yes, you do know your body, you know what's normal for YOU and what's not. They try to make you doubt it, and yes they have the qualifications and the expertise, which i respect, but I understand what i am FEELING and that gives me the heads up. It's not normal to be in pain full stop, let alone all the time.

Hope you sort this out your way. I know now that i am alone in this and so i'll go it alone until i see what happens next.

Hope you feel better, i really do.

M 💕

[Chloelouise92 in reply to Hidden]

Crazy isn’t it. I felt like in the end I had to do my own research and go in and say look this is what I think I have!

Ended up agreeing for me to have a laparoscopy after a tut and an eye roll (honestly me and my mum were so shocked when we left the room we burst out laughing!) I was told 3 month wait. After 4 months I phoned up as I’d heard nothing and was told at least another 8 months!

Went private in the end decided I couldn’t wait that long! Shame as I had my consultation within couple of weeks and then was booked in for 28th April but obviously with the pandemic it was cancelled.

This forum has been really great to speak to other women going through similar experiences! Just need to vent sometimes or just ask for some advice!

All the best to you xx

[Afrohair]

I get the most pain after the period I figured it’s the lesions forming as I can usually feel a kind of growth in different areas of my pelvis vaginal area. to start with it’s only blood as time progresses it turns into a nodule or lump which can be painful

[Hidden in reply to Afrohair]

oh dear.... I am not alone in this then. I feel for you. Hope i can figure out why soon. Because this isn't normal. Well none of it is, but this especially isn't. Hope you feel better

M 💕

[priyainindore]

Definitely not alone. I get it bad a day before and then first 2 days of period but when period finishes help pain comes on strong. I thought it was the start of ovulation but then that only lasts 48 hrs and my pain seems to go on for eternity.

I definitely think diet (caffeine, gluten, sugar, dairy, alcohol, the list is endless) exacerbates the pain and also causes constipation but theres only so much will power you can tolerate before giving into chocolate cravings and then the cycle starts again.

Currently awaiting a lap and a colonoscopy. I called my GP, Gynae and Gastro as currently under both and pain has been unbearable this week ( not due until end of next week). Gastro registrar in a round about way said they dont think I'll find any answers through a colonoscopy. I received my pelvic MRI results and it states no sign of deep endo but I'm not giving up. I was 7 days away from a lap before lockdown so just have to grin and bear for a bit longer. My c section scar area on the right hand side feels sensitive.

Has anyone seen a private endo specialist for a second opinion whilst currently under NHS gynae?