Extreme period pain/endometriosis?

[dorisn]

Hello, looking for someone possibly in a similar situation. I have experienced horrendous painful and heavy periods for over 13 years. About 5 years ago I realised this was not normal and when I felt confident enough to seek help as I couldn’t stand the pain any more I visited the GP. They suggested I try oral contraceptives. Over a couple years I tried 4 different types which did ease the pain and also made my periods lighter but I experienced terrible side effects on each contraceptive so could not take them any more. The doctor has referred me in the past for an ultrasound of my stomach area as endometriosis was a possible diagnosis which all looked ok- I did not have the vaginal ultrasound at the same time and I’m wandering now whether it is worth ringing the doctor again to request this? In the past few years I also had a cervical scan which was for a different reason and apparently everything was ‘fine’ would this also mean that there is no possible endometriosis from the scan I had?

I have been given mefenamic acid which I take at the start of my period but at 1am this morning I woke up with the most unbearable stomach pains, I have been up and down going to the toilet due to the pain, I feel sick, the pain is spreading down my legs and I feel like I am going to be sick - because of this I have had to miss work as I cannot possibly function or leave the house. I also take co-codamol on top of the mefenamic acid and can honestly say I get no pain relief whatsoever. Anyone in a similar situation? Or is it normal to be bed bound in absolute agony for a few days each month 😞

[Puttingonaface]

I literally feel your pain. Im also curled up in agony. Im waiting for a laparoscopy to see what is going on in there.

U are not alone but its not normal so I would ask gp for a gynee referl.

[Hidden]

It is not normal. You need a referral to gynae. A clear ultrasound does not mean endo is not present - it can generally only be seen by a specialist who knows what they are looking for and if the lesions are large. My initial ultrasound was clear but I had severe disease with multiple large lesions on my bowel and the sonographer just didn't know how to spot it.

NICE guidelines here talk about the use of ultrasound - might be worth taking to your GP when you ask for your referral (section 1.5.2)

nice.org.uk/guidance/ng73/c...

[Hidden]

An ultrasound is not an official way to diagnose endometriosis. A diagnosis can only be made by seeing it via laparoscopic surgery. Just because they saw nothing on the ultrasound means absolutely nothing.

That level of pain is not normal, you’re right. Push harder, get a referral to a BSGE clinic near you if possible, and don’t give up.

[WeeMrsH]

You need a laparoscopy to diagnose Endometriosis- push your GP for this. You’ve tried other methods such as the OCP and mefenamic acid so very reasonable now to request a referral to a specialist gynaecologist for a laparoscopy.

[L1nz86]

Have you tried mefanamic acid before?! I say this just because when I took it I ended up that evening in sheer agony, on all fours retching and holding my stomach in pain! I was on the verge of a&e but finally after a few hours it stopped. It was the mefenamic acid - I may as well have taken poison! I'll never forget it. X

[dorisn in reply to L1nz86]

Yeah I take it every month but wander if it actually works at all! That sounds like a nasty side effect 😣

[L1nz86 in reply to dorisn]

I'm allergic to all NSAIDs, so can't take ibuprofen, aspirin, diclofenac, etc. The doctor gave me mefenamic acid without looking at my notes obviously. I googled that night when I was in so much pain and realised it was a NSAID and should not be taken if allergic to aspirin! I now check everything prescribed to me lol! I have heard it can cause tummy pain a lot though so thought I'd mention in case it was a new thing x

[dorisn]

Thanks for advice everyone will talk to GP again next week and ask for a laparoscopy x

[Fabbird]

Hi, if the pain is actually in your stomach then, as other people have said, it could be a side effect of the mefenamic acid. I believe about 1 in 100 people get this side effect severely (including me).

But if you can tolerate it and the pain is like period pain, my GP told me to start taking it regularly two days before I expected the pain. Apparently it takes a couple of days to reach full effect. Might be worth trying to see if you get more relief that way.