Talk to me about endometriosis and the pain

[CatsForgotPassword]

I’ve talked on here about my miscarriages before, and they are once again considering I have endo but it’s being given more serious consideration than before. I first went to the GP with painful periods when I was 14 and by 16 I was being given tramadol and codeine to deal with it.

What is the pain like for anyone who has it? Before I had my son, it was agonising. I’ve never felt pain like it (my cesarean has nothing on that) and it used to make me miss five days of school and then college.

However after I’ve had my son, the pain went. My periods are light and painless.

Instead I’ve got constant dull pelvic pain, mainly on my left, that turns excruciating mid cycle. I was rushed to a&e a few months ago with what they thought was appendicitis but no, was mid cycle pain. I couldn’t talk and was doubled over unable to stand. That’s not normal surely.

Scans have shown what looks like a hydrosalpinx on the left and I’ve never had PID, chlamydia or anything like that. So I’ve been told that also indicates endo.

Has anyone with endo had this? Anyone had this and it been something else? Advise appreciated, I’m really worried. Thank you.

Holy how did you manage the menopause? Did you go on HRT?

Hi Catsforgotpassword,

I know this is an old thread but i just came across it whilst googling and it hit a chord. Did you ever work out what was going on to give you the pain? Was it the endometriosis or could it have been the hydrosalpinx? How are you doing now?

I have a similar situation in that I have a hydrosalpinx on my right side and get really bad mid-cycle pain ( and period and post period pain) and total fatigue. I haven't had heavy periods for many years and like you, mine are light and short. I'm not aware that I have endometriosis, but Ii likely have loads of scaring from peritonitis that i had post pregnancy some years ago.

Anyway on the off chance you still check mumsnet i thought i would ask if you ever managed to work anything out...

Thanks

I just wanted to comment having last month had a day in a&e with suspected appendicitis but turns out to be an endo flare up.

My endo has changed after children, bleeding not as heavy but lots of pain and exhaustion

Hi dishwashersaurous,
Thanks for your reply. Sorry to hear you had such a rough time of it. I may well have endometriosis too, its all just one chaosy achy tummy at times of the month. Useful to know endo is not always associated with heavy bleeding. Will you get any treatment?

My endo was finally removed last year; it's been life changing!

The pain was absolutely horrific and what was worse was the Drs telling me nothing was wrong. I was only treated when it was affecting my fertility.

Last 2 nights I've been woken up with lower pelvic pain, like period pain but mid cycle! Could this be an endo symptom? Last period was unusually painful but have had 18 years of issue free periods up until this point!

Like you OP I have fairly light periods but they are excruciatingly painful. I don't get mid-cycle pain but I get a long painful run up to my periods, like a week to ten days before my period starts (so maybe that is mid-cycle pain, I'm not sure). I've always had painful periods since I was teenager and used to collapse at school quite often with the pain - a lot of months the pain is so severe I'm completely bedridden, can't speak, face goes ashen, sweating, panting for breath, vomiting, sometimes my whole body shakes uncontrollably like I'm having a seizure. I've often been on the cusp of calling myself an ambulance. So after a hell of a lot of pushing I finally had a lap in my late 20s fully expecting them to find endo, GP was convinced that's what they would find and they found...nothing. All normal apparently. It sounds strange to be gutted about not getting a diagnosis of a chronic incurable condition but I actually was because it's since meant that I well and truly do get fobbed off by everyone because well it's not endo in their eyes. Ive wondered if I do have endo (to be honest I'm convinced I must do because there's no way this is normal pain) and it has been small or in a particularly difficult to find place and they've missed it but who knows. This level of pain certainly doesn't feel normal to me.

No real advice to give I'm afraid, just wanted you to know you're definitely not alone.

Oh and I get the delightful javelin arse too.

And just noticed this is a zombie thread that's been revived! Oh well.