Does endo cause chronic headaches?

Hi I wondered if anyone else suffers with terrible headaches? The main thing I'm wondering is, does endo cause terrible headaches? Every week right now I get a day where I literally can't do anything because I have a terrible headache and nausea. I'm concerned about why it keeps happening so often and wether anyone knows if it's linked to endo? Thanks in advance for any replies!

8 Replies

  • Yes I get migraines because of the endo too. It's quite a common symptom unfortunately 😞 I don't know if it's because of hormones, I did read one article which suggested that endo can travel anywhere in the body and that could be the reason. Have you seen your doctor? If you are getting headaches on a regular basis it is always a good idea to get it checked out x

  • Thanks for your reply, I haven't really spoken to them about the headaches but I will have to as I need some medication to get rid of them. The over the counter meds don't work unfortunately so I will have to try and get something prescribed.

  • I spent a lot of frantic appointments with GP's and a consultants trying to convince them having a headache every time I had a period for 10 years couldn't be a co-incidence. They tried to tell me it was just stress and suggest that because I worried about my bad periods (which were just normal women's problems in their view) i was getting a headache.

    I was also getting a feeling of being confused, unable to concentrate, like my brain wasn't working, rather like I'd had a couple of pints of beer.

    Now I've had surgery and my head is relatively normal I've been doing some reading. The endometrial cells outside the abdomen can generate their own oestrogen meaning that you might have far more than a normal woman. But they also generate a substance called Interleukin 6. You can look that up on wikipedia for more details, but it does affect the conductivity in the brain hence can cause confusion difficulty concentrating etc. It causes inflammation and is associated with inflammation of the brain in children, although whether it causes it or not is not clear from what I've read. When I got my headaches badly it certainly felt like my brain was swelling and my head was about to explode.

    The Interleukin 6 is suppressed/countered by oestrogen. Complicated!! I know my headaches were reduced by drinking soya milk which contains phytooestrogen. So interleukin 6 is currently my prime candiate for causing my headaches.

    However, oestrogen feeds the endo, so drinking soya milk might help the headache but make other things worse. I also found that coffee, chocolate, vanilla and chilli all help. On some occasions when it is milder it seems to be about sugar and electrolyte levels.

    I'm now post hysterectomy and on HRT and still having a few issues, but then the endo is in my lymphatic system so there's still some hanging about. I'm trying different things each time I get a headache to try and narrow it down to what is working and researching the different things that do help to see if they have similar chemicals in them but chemical biology isn't my strong point.

  • Thanks for your reply and for the info and advise! I'll have a read! I do also find sometimes that eating and having a drink helps get rid of the headache if it's a more mild one. I hate how doctors don't take endo seriously! I really hope there will be a cure one day!

  • Hello there, sorry to hear you are experiencing these headaches. Unfortunately I get a lot of migraines due to endometriosis - I've been taking triptan meds for a few years which help although I'm not sure deep down if they have any effect or connection with the endo itself.

    Recently I went through a cycle of ivf and was unable to have my triptan meds if a migraine arrived: i was allowed paracetamol and codeine which did help a lot; I was also asked to drink 2 litres of water a day, and found if I mixed half a pint of water and half a pint of coconut water, it seemed to prevent migraines coming on. The coconut water contains electrolytes, I wonder if this helps.

    But definitely ask your GP about the headaches and don't let them fob you off with any 'it's all part of being a woman' stuff -I went to docs almost every few months asking if any connection between severe period pains, very heavy periods, joint pain and now migraines and just got a pat on the head and sent on my way.

    I hope you feel much better really soon! Take care XXXX

  • Hey thanks so much for your reply! It seems maybe electrolytes can help! I sometimes find it hard to drink enough when the headaches make me feel so sick! I also feel nauseous a lot even when I don't have a headache. The doctors barely seem to know anything about endo which is rediculous when so many women are suffering so terribly with it! It's literally ruining my life right now. I'm definitely going through the roughest time I've had with it so far. I can't handle the nausea, I can't get on with anything when I feel like that!

  • I have had a lot of headaches off and on. Before I went on the pill I used to get terrible headaches and nausea during ovulation. I also have a lot of what I term space-y days when my head just feels light and floaty (sometimes painful too).

  • I get headaches on progesterone only pills

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