Does anyone suffer endo neck pain?! - Endometriosis UK

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Does anyone suffer endo neck pain?!

Merlion09 profile image
8 Replies

Hi Ladies, I know this may be a strange question. I have stage 3 endometriosis but for the last year I have also had chronic neck pain. Does anyone else have a similar experience? Can endo tissue be found at the neck??

I'd be very grateful of any kind of thoughts you may have please.

Thank you

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Merlion09 profile image
Merlion09
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8 Replies
Maxi72 profile image
Maxi72

Hello

I have nerve damage due to endo and have suffered for over 15 yrs before diagnosis. I had one sided pain in my back, shoulder, neck and head as well in the pelvis leg and buttock. I can’t exactly explain why but since treatment for endo (surgery and injections) my shoulder and neck pain has reduced. If you have significant tightness within your pelvis it can effect your posture (as in my case) which can then affect your neck so it could be secondary rather than having endo in the neck specifically. However although my endo on laparoscopy was only stage 1, the fact that it is sitting on a meshwork of nerves ( which is inoperable) affects a lot of areas and it’s therefore definitely possible to be found just about anywhere. I suppose if your neck symptoms improve with endo treatment then you may have confirmed what you suspect.

Take care.

Merlion09 profile image
Merlion09 in reply toMaxi72

Thank you so much for sharing your story with me. I thought i was going mad and felt a bit stupid posting my question but I'm glad now i did - thanks again 😊

Pdoodles profile image
Pdoodles

Hi I have neck pain at times also shoulder and chest. I am trying to get a diagnosis for thoracic endometriosis. Keep a diary and if you find it's related keep pushing . Mine was on and off for 12 years but the last 2 years pain has become daily . X

Merlion09 profile image
Merlion09 in reply toPdoodles

Thank you so much for your reply and your tip of keeping a diary - i never thought that i would receive a reply as i didnt think it may have been linked to endo but the replies have proved it is. Thank you for insight into your experience and i will keep pushing - thanks for the support. I hope you receive your diagnosis and will keep pushing like you.

I wonder if i may ask you a question please if I'm not being too personal please Pdooles ? - have you had a blood test? How is your doctor going about diagnosis of thoractic endo?

:0) x

Wildgoose1 profile image
Wildgoose1

It is possible to have endometriosis on your diaphragm which can give you neck and shoulder pain. I get right sided neck and shoulder pain and a diagnostic lap in November showed endometriosis on my diaphragm as well as pelvis.

Merlion09 profile image
Merlion09 in reply toWildgoose1

Thank you so much for your reply Wildgoose1. I did think i was going mad and never ever thought that i was going to have any feedback as it seemed a long shot but you have definitely put my mind to some rest.

Are you taking anything for your pain Wildgoose1? How are you feeling now? Is the pain worse ar certain times of the month?

Thanks again for helping me with your reply xx

Wildgoose1 profile image
Wildgoose1

Hi merlion09..my endometriosis was confirmed following a laparoscopy in November last year. They told me I had it everywhere including bowel and diaphragm. It was a shock to me but made sense when I considered my symptoms. As well as bowel symptoms I had been having a lot of neck and shoulder pain but kept putting it down to other causes. It was suggested I try decapeptyl injections to put me into menopause and suppress the endometriosis. I had 2 monthly injections. The last one was nearly 12,weeks ago. It did stop my periods and the worst of the pain but I found the side effects too severe even with add back hrt and did not have a 3 rd injection as recommended. I have not had a period since stopping but I am still suffering from menopause symptoms. Have a look at Nancy's Nook endometriosis education Facebook page. You have to request to join as it is a closed group. It is American based but has a lot of relevant information and you can search for diaphragm endometriosis and there is plenty to read : ) x

Merlion09 profile image
Merlion09 in reply toWildgoose1

Thank you so much for replying and I shall certsinly be looking into that very useful and helpful facebook page.

Many thanks again x 😊

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