Shoulder pain during period : Hi all, I... - Endometriosis UK

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Shoulder pain during period

IB15 profile image
IB15
35 Replies

Hi all,

I was wondering if anyone else experiences pain in their right shoulder when they are on or due their period?

I have been diagnosed with stage 4 Endo In my bowel and I’m waiting for a bowel resection with specialists this year (terrified!)I had my diagnostic lap with a specialist also and there was no mention of diaphragmatic Endo, I’m wondering if this could be linked or maybe it is just muscular and flares with the inflammation in my cycle. I’m currently on the pill which helps a lot but still get the occasional bad flare up.

Any advice or experiences would be so welcome!

Thanks x

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IB15
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35 Replies
Endolemon profile image
Endolemon

I believe Endo can be in any part of your body. I can’t breath at night for a long time, so it might be in my nose .Have no idea how to check it. 🤷‍♀️

IB15 profile image
IB15 in reply to Endolemon

bless you I’m so sorry to hear that! Have you asked a specialist at all? Xx

Endolemon profile image
Endolemon in reply to IB15

Thank you 🥰 I will try to ask my surgeon at next app. But I am so fed up of everything goes wrong with me 🤪

IB15 profile image
IB15 in reply to Endolemon

I know the feeling, there is always something! I hope they can sort something for you x

Yes I do and during ovulation too.

My Dr explained it, but I don't fully understand, that it (endo) might be anywhere along the nerve but the brain interpretation is that it's shoulder injury.

I find heat helps mine.

IB15 profile image
IB15 in reply to

thank you so much for your reply, sorry to hear your suffering too. Yes I have been told it could be referred pain also! X

Hi

I had excruciating shoulder pain after having a lap and other abdominal surgery.

My surgeon said there are nerves high in your abdomen somewhere that when under pressure send pain messages to your shoulder(s). My friend had the same after her c section and hysterectomy.

It could be the inflammation in your abdomen pressing on these nerves.

Good luck with your bowel surgery.

I had the same but was very lucky that they didn't have to section it in the end. When they went in they were able to remove it more easlily than they thought.

IB15 profile image
IB15 in reply to rhubarbcrumble100

Thank you so much for your reply, this makes a lot of sense! Thats great they didnt have to do a full resection for you - are your symptoms better after the op? X

rhubarbcrumble100 profile image
rhubarbcrumble100 in reply to IB15

Yes the op made an incredible difference to me.I went from pain 24/7 that nothing helped to just a couple of days a month that painkillers controlled. x

IB15 profile image
IB15 in reply to rhubarbcrumble100

I'm so pleased to hear you got relief!! Thank you so much for sharing xx

Sammyjam profile image
Sammyjam

hi yes I do and no painkillers help it , the gp never knew what to say when I went to them about it and just kept throwing painkillers at me I thought I was going mad but after researching I have found there is a link to endo ! Also I have also always said with ectopic pregncies they always ask about shoulder pain so there has to b a link to the ladies system and the shoulder don’t u think & where do they put the contraceptive implant!!

IB15 profile image
IB15 in reply to Sammyjam

It is so painful! I had never thought of that before actually! X

Annabelannabel profile image
Annabelannabel

Hi

Weirdly enough I'm waiting to have the exact same I have endo on my bowel and uteral sacral ligaments and on the back of my uterus. I work physically and have always put it down to my work with heavy lifting etc. However I have learnt that my right shoulder pain is linked to my endo. I have an implant in my left arm with no issues. But the agony in my right arm is just nasty. I haven't had a lap yet but will this year and interested to see how that impacts this.

All the best and good luck

Annabel

IB15 profile image
IB15 in reply to Annabelannabel

Sorry to hear your suffering, I also thought it was muscular and went to an osteopath for years not understanding why it wasnt helping! mine is also adhered to the back of my womb and POD - I sometimes think the bowel involvement is causing trapped air in my shoulders? Im glad your implant is working for you and hope your Op goes well - if you ever want to chat let me know x

Annabelannabel profile image
Annabelannabel in reply to IB15

I had really bad back pain for years and went to physio I also got referred to a neurologist for it too now I know it was endo from when I was at school it was always worse around my period and I did a lot of sailing and always put it down to that but it's nice to know what's causing all of this and have a diagnosis. I'll pop you a message it's nice to have someone in a similar situation to talk to.

Hope your op goes well too 😊

Annanel

PDB2022 profile image
PDB2022

Hiya

So sorry you’re having to deal with all of this, I have been in a very similar situation.

I suffered with right shoulder pain around my period for years. I was fobbed off, sent to physio and all sorts. It was only a passing comment from one GP that it could be diaphragmatic endo that made me believe that this is what it was given the timing of the pain around my period.

I had a diagnostic lap to investigate the pelvis but they never checked the diaphragm at that time unfortunately. Years later, a different endo specialist centre suggested an MRI but I never had this, I’m led to believe it’s not the most reliable form of detecting diaphragmatic endo.

I had a laparoscopy for excision of stage 4 endo which included a bowel resection just over a year ago. It was only at that time they used the camera to have a look at the diaphragm and confirmed that there was endo on the underside of the diaphragm. There may well have been more but they didn’t have a thoracic surgeon to fully investigate the whole diaphragm, we’d only planned to address the endo in the pelvis at the time.

The gases used to expand the abdomen in surgery can also cause shoulder pain but now I know for sure that the cause of my right shoulder pain is diaphragmatic endo.

Wishing you the best of luck with your surgery ahead, I know it’s not an easy place to be but it sounds like you will be in good hands, just focus on the positives and how much better you are likely to feel from it all. If you have any questions at all please feel free to message x

IB15 profile image
IB15 in reply to PDB2022

thank you so much for your reply! So sorry to hear you have been suffering . This is was Im suspecting is happening to me - I will ask them to look at the diaphragm again in my next op if yhey can as its really debilitating.

Will you be able to have the diaphragmatic endo removed? It must be so difficult to deal with, especially after youve been through ao much already!

I am really struggling with the build up to the surgery - do you mind if I ask did you feel better after it? Im also told I could have a temporary stoma - ive met with the nurses who are lovely but im still quite nervous about it!

Thanks so much x

sickandsore profile image
sickandsore

interesting as I too suffer with pain in my shoulder, I once had such severe pain that we called an ambulance thinking I was maybe having a heart attack. Apparently the pain women sometimes feel in their shoulders is related to ovaries!

I’ve noticed as I have gotten older, I am now on HRT, I’m 50 and in peri menopause, I get cyclical pain in my arm, shoulder, jaw and worst of all my gums flare up😓 my dentist says it’s quite common.

I have a history of endometriosis and IBS and have had several surgeries due to endometriosis but I must admit I had never really put the pain down to endometriosis, so maybe I should be considering that as a reason. It’s a complex condition but can be absolutely life limiting for some women.

I always think shoulder pain should be checked out just in case it’s cardiac related ( I have heart disease also) so my advice is don’t ignore it and just get yourself checked. X

IB15 profile image
IB15 in reply to sickandsore

Thank you so much for sharing, that interesting you mention jaw and gums as ive noticed that also! My goodness as though the pelvic pain isn't enough for us women - im so moved by everyone replies this is such a wonderful community ❤️ Thank you for the advice and I hope you get some relief, take care x

Shelldob profile image
Shelldob

this will probably be referred pain from what Iv been told over the years xx

Kooolcatt profile image
Kooolcatt

I had exactly the same pain before my first lap and my surgeon had suspected it to be endo on the diaphragm but during the surgery he found out that my diaphragm was clear. It was the endo in my abdomen which was pushing a nerve called phrenic nerve which I believe runs from our back to the right shoulder. Like you said it’s called as “referred pain”. Do you have any upcoming surgery for your endo ? A through excision of endo should give you relief.

IB15 profile image
IB15 in reply to Kooolcatt

thank you so much for your reply sorry to hear you’ve gone through that, I am concerned it diaphragmatic endo but I do think my specialist would have checked this as we discussed it before the op. This sounds like it could be what is causing it, thank you so much for sharing! Yes im waiting to have it all excised and a bowel resection this year so hopefully this will help! Did you have yours removed? X

Purplebex profile image
Purplebex

Hi, I had a bowel resection 12 weeks ago, if you feel worried feel free to message me, I did have an extremely sore shoulder for a period of a few months at the time I thought I'd injured it but now I do wonder 🤔 x

WanderlustLost profile image
WanderlustLost

I do, yeah. Also stage 4 and on my bowel (among other places 🙄). Scientists/doctors haven’t yet identified why it happens, but it’s a fairly common thing. It’s not that there’s endometriosis on your shoulder it’s a weird sort of I dunno pain displacement? A neurological thing anyway.

IB15 profile image
IB15 in reply to WanderlustLost

thanks for your reply! How are you coping with the bowel Endo? X

Eclair2 profile image
Eclair2

I have the right shoulder pain, it radiates up my neck and down my arm and effects my elbow and lifting my arm too.

I have had my diagnostic lap and it was confirmed that I do have endo on my diaphragm.

Some nights I can’t lay down to sleep and I get a weird feeling below my rib and pain breathing sometimes too.

Zoladex seemed to help but you can only have it for 6 months at a time and are meant to have two years inbetween the next 6 months I think. I’m on my second lot which was offered just before the two year gap.

Awaiting an operation to get rid of it 🤞

IB15 profile image
IB15 in reply to Eclair2

sending you love, and hope you get this sorted ❤️ I also get uncomfortable sensations under my ribs in my back it’s so frustrating I hope they get you sorted soon! I’m on desogestrel I take x2 a day it comes with its side effects but it helps a lot! Maybe worth discussing it as an option if the zoladex isnt a long term option? Glad it’s helped though! X

Robin2021 profile image
Robin2021

Sorry to hear you’re going through this… I had the same pain and had Stage IV endo-I had a laparoscopy a couple of years ago and the surgeon confirmed that there was “deeply infiltrating” endo on my diaphragm. He removed as much as possible and though the pain didn’t fully go away, it was so much better. I remember the pain as being absolutely unbearable and so much worse at night-painkillers would help but never fully stop the pain… I hope you can get some help with this asap!

IB15 profile image
IB15 in reply to Robin2021

thank you so much for your reply, that’s so good you had some relief from the surgery! Did you have a specialist thoracic surgeon to do it? X

Robin2021 profile image
Robin2021 in reply to IB15

My surgeon was a consultant surgical gynaecologist. However, interestingly I had cardiothoracic surgery previously due to a benign tumour on my heart wall which had spread to my lung. The surgeon who performed that surgery couldn’t see any sign of endo on the diaphragm but she was looking from the “top down” effectively and was definitely more focused on removing the tumour! I thought my shoulder pain was due to that tumour and had discussed it with the surgeon. I couldn’t believe the pain was still there after the tumour was removed.

It was only when the gynaecological surgeon operated from the “bottom up” towards the diaphragm that he could see the endo. He also noted that he was able in my situation to remove most of it but that there was some left that he was unable to remove and may require a thoracic surgeon to be involved if it needed to be removed in the future or if it became worse etc.

Hope this helps!

Tfg1991 profile image
Tfg1991

Yes! Exact same issue. Mad to see how many people on here have the same problem. Mine flares up on first & second day of being on period. Consultant also mentioned likelihood of it being on my diaphragm but laparoscopy confirmed it was all clear! Feel for you, as it’s so painful.

Usually taking ibuprofen consistently throughout the day is the only thing that helps. I’ve also recently learned that pressure is a huge help, so I tend to go to the gym and work a shoulder session and the pain subsides.

Hope your op sorts everything for you!

IB15 profile image
IB15

I wasn’t expecting so many responses I can’t believe how many suffer with this! Everyone is so kind to share. Ibuprofen does help me a bit as well thanks for the tip I’ll try some exercises on it! I hope you find some relief for yours also, Thank you x

AmyK227 profile image
AmyK227

I have this too. For about the past year now, the pain flares during my period and also mid cycle (so around ovulation). Currently doing IVF and it was awful whilst on all the stimulation meds. It’s always my right shoulder and much worse at night, it radiates down my shoulder blade and back. Painkillers don’t even touch it!

I have also assumed it’s down to thoracic endo, my laparoscopy was back in 2019 and my pelvic pain has been fine ever since, my shoulder and also bowel issues are my only real endo symptom now. Feels like there’s a commonality of bowel / POD related endo from the comments here xx

IB15 profile image
IB15 in reply to AmyK227

bless you, I really hope you’re doing well with the IVF, sending lots of positive wishes your way!! ❤️

Thats great your pelvic pain is better, bowel endo is not fun i hope its something they can sort for you soon x

Avourneen profile image
Avourneen

I think this is pretty typical of endo in diaphragm because it is only when you have your period. You probably need to go back to your specialist and you will need a very good specialiast to treat diaphramic endo. Good luck

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