Does anybody suffer with headaches? - Endometriosis UK

Endometriosis UK

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Does anybody suffer with headaches?

aimee22 profile image
12 Replies

Hi all,

I'm Aimee, 23 and have been diagnosed with 'severe stage 3' endo.

I was just wondering if anyone else suffers with headache? I'm waking up with one about 4-5 times a week, and most of the time it turns into a migraine and i'm sick.

The medication i'm currently taking are Zomoroh (slow releasing morphine tablets, so it's always in my system), diclofenac suppositories, paracetamol, and oramorph (for breakthrough pain, but i'm having to have it most days). I've been on this lot for about 5-6 weeks but my headaches have inly been in the last 2-3 weeks. Could it be a side effect of the meds?

I'm due to see my GP next week as i've been doing a pain and medication diary so he can see how i'm getting on etc and he plans on referring me to the pain management clinic. Has anyone got any experiences (good or bad) to share with me regarding that?

I'm just so fed up at the minute. I've just got my head around coping with pain all the time and then these headaches come from no where. It's especially annoying when i have a 'good' day pain wise, but end up in bed with a migraine.

Any advice would be appreciated.

Sorry for the long post!

Thanks, Aimee. Xxx

12 Replies
wp22 profile image

I get migraines too, some weeks about 3 a week and with sickness too. Before endo I only got the occasional mild headache, now if I get one it will no doubt turn into a migraine. I have endo on my rectum. They are so annoying and can last up to 2 days X

aimee22 profile image

Thanks for the reply. Have you spoken to your GP/Consultant about the migraines? If so, why do they think you are getting them? I'm not seeing my GP until next week so just thought i'd ask on here to get some ideas first. Xx

wp22 profile image

My present gynea seems to think they arn't endo related, but I happen to think they are... I had never had a migraine before my endo days, endo seems to have a domino effect on your whole life and affects everything. X

aimee22 profile image

Yeah that's definitely true. I think the same as you regarding the migraines. I'll see what my GP thinks next week and i'll also ask my consultant when i see her in a few weeks. I guess it could be a side effect of medication too? What pain relief do you take? Just wondering if we're taking anything the same? X

wp22 profile image

I have Panadol extra (red box), they are around £2 for 12 or something but they defo take the edge off them. I panic if I have run out so try and make sure I always have them in now. Do you take anything? X

aimee22 profile image

No i don't take anything for them, things i have tried in the past just don't seem to work. And there's a few drugs i can't take as i'm on oramorph daily for my endo pain. It's a nightmare! X

hayls profile image

Headaches and migraines can definitely be caused by hormones fluctuations! My neurologist fully recognises that hormones have a huge effect on headaches so don't let anyone tell you otherwise, my gynae also agrees, menstrual headaches are well documented. Although my neuro, who is a top headache doctor, has not been able to establish any link specific to endo as many women suffer with headaches linked to their cycles, particularly in 20s and 30s. I also have a neuro condition that has no known cause but current medical theories that it develops as a rare side effect to the pill!

in reply to hayls

Hey I just read ur post about headaches and being side effects of the pill. Can I ask what the side effects are cause my doctors have taken me off all contraception because it seems to make me worse than better. I've got a high hormone level according to my doctor that's y the pills aren't working. But I've been getting the heads really badly like u said just wondering if it's link with what ur talk about xx

danni8889 profile image

I have been getting severe migraines since being diagnosed with endo. I actually came on here to see if anyone had been going through the same as the last migraine lasted 4 days and was unbearable. I definitely think it is linked to the endo as i never suffered with them before.

arta33 profile image

My head has been getting progressively sore after the last few weeks and I've just been diagnosed. I think it is a hormonal thing but I'm not 100% sure. I never used to get them.

ermintrude38 profile image

yes, I get migraines regularly too - mine are largely time of the month and range from annoying and lasting 3 days to severe enough to make me sick. I used to get them a lot more before I started drinking at least 2 litres of water per day - are you drinking enough water? xx

missy121 profile image

yes, although i buy 400mg ibuprofen, they're pink, they really help definately recommend

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