Neck pain with Endo? : Hi everyone, I was... - Endometriosis UK

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Neck pain with Endo?


Hi everyone,

I was diagnosed with Endo March this year which was removed with ablation.

I mentioned during appointments before and since my lap about neck pain that flares up at the same points each month during my cycle, but nothing much has been said other than that.

It feels like a pinching/pressure at the base of my skull which radiates up my head to behind my left eye. This is paired with a pain deep in my neck on the left side a few cms below my ear.

I went to the dr this week after a really bad flare up who completely wrote off the link saying he had NEVER heard of a link between Endo and neck pain.....

Has anyone else experienced this with their Endo?

Feeling at a bit of a loss with it.

Thank you :)

11 Replies

OMG, I have this too. I’m so pleased to finally read about someone else who experiences this as well as so far my doctors are at a loss to explain it, so I was starting to think it was unrelated to the Endo. Although, of course am sorry to hear you also get this!

I have Endo and adenomyosis, awaiting a surgery date for a hysterectomy with removal of the left ovary only. Every month about 5-7 days before the start of my period I have a flare up of chest, neck and jaw pain leading to terrible pain up through the back of my neck which leads to an awful headache (not like a normal period head ache at all).

The docs did a CT scan which they ‘think’ shows a slightly enlarged lymph node in the right side of my chest but aren’t concerned and don’t think it’s causing the chest pain. They can’t see any Endo in my chest/lungs so have said they don’t think it’s related to the Endo.

But I can set my watch to when the neck and chest pain starts and ends-always in line with my period!

I don’t really know what else to do now, the pain is terrible, sometimes worse than the pelvic or hip pain but the docs don’t seem to have any answers and won’t give me anything stronger than cocodamol.

I’d love to hear if anyone else apart from us two experience neck pain and if you got any answers!

From my own experience, O have strong headaches and neckache and I think it's related to hormones fluctuations. x

in reply to LMIpswich

I'm so sorry you experience this too :( it can be so debilitating! I have been to the walk in physio and he was so helpful and sympathetic. He also referred me for a proper appointment and to see a neck specialist. So maybe see if you can see a physio, I'm hoping they'll be able to help and reduce the pain. Good luck xx

Hey, I had neck pain along with back pain and shoulder pain during my flare up days. It's actually really common and is related to endo but also because we're woman; it's all to do with our core muscles (abs) and our back muscles.

I replied to a lovely lady a while back querying back pain too; my physio says it's all related, explanation in the post!

You can do things for it to help ease it, and improve it slowly so eventually you'll not need any prescribed painkillers; strengthening the core and back with a sports / injury specialist.

Hope that helps xx

in reply to farahziya

Thank you so much for this! I have visited the walk in physio and they have referred me for further investigation and to see a specialist! xx

Hi there!

It happens to most of us Endo suffers 😞!

I hope you can find the best option o ease you pain.

All the best xx

So glad I came here, didn’t even think about my neck head chest pains being related and the pelvic pain I’m getting lately is horrendous, it’s all clicking together now it must be related 😳

Does anyone else feel really tight chested every time they get a cold and have random rib pains at any time not related to being sick in particular? I also get shoulder issues well it’s actually the upper trapezius muscle and posterior muscles overlying the shoulder blade anyone else get this?

yes I get all of this too! When I go back for my physio appointment I'm going to mention it in more detail and hopefully they'll be able to help. Hope you're managing ok x

I'm sorry to hear that you're dealing with this, since neck pain can sometimes be debilitating. Something that's always helped me with neck/shoulder pain is yoga. I discovered it a few years ago after a friend brought me to a class, and I fell in love. A lot of people use yoga for weight loss, meditation, or mental health, but yoga is also amazing for pain relief, and can save you money from going to the doctor. While you should consult your doctor before trying anything, these poses might help relieve some of your pain:

in reply to AmyKart

Thank you, I am definitely going to try this out. Hopefully the yoga along with the physio will really be able to help x

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