Hi,
I'm in the process of being diagnosed. So still very new to learning about endometriosis. I have recently been feeling pain in my shoulders/neck/arms/chest/pelvis. Now even though I have pain everyday this is a new pain. I've been to hospital had ecg, blood tests and everything is coming back ok! I know you can't give medical advise on here but I just wondered if its normal with endo to have pain in places other than back and abdomen? Thank you x
Hi
There have been plenty of posts here about pains all over, including shoulder, chest and legs, especially sciatica type pain.
I get abdominal pain which is likely Endo related, but still checking it out. I did have shoulder pains a few times but put it down to muscular pain at the time, but who knows.
What pain relief are you taking?
Thank you for replying! Oh I had no idea! Yeah it's my shoulder/chest that was worrying me but doctors have done tests and said my heart is fine but didn't give me answers on why I have the pain!
I've been taking naproxen and paracetamol. Cocodemole when it's a bad day. Doctors are reluctant to give me pain meds as I'm not diagnosed it's so frustrating x
Don’t forget the pain is real, we don’t get pain for nothing. Glad Drs have given you meds and not letting you suffer. Hope they are working ok. They should give you omeprazole with naproxen, stop any potential ulcers in the stomach. I was told by pain clinic to take the paracetamol regularly as a preventative, I try but it’s not easy. Ask for a referral to the pain clinic.
Hope you have a pain free day tomorrow and happy Xmas
I've already asked but my gp won't refer me to a pain clinic cause there's not enough evidence? Even though I've spent most of my year in hospital with chronic pain! Also I do have lanzaprole I think that's similar to omeprozole?
Thank you so much for the advice
you too have a happy Christmas and praying we both have a pain free enjoyable day xx
Maybe New Years resolution is to tell GP to make a referral or see another GP, stupid drs 😂🤦♀️🙄
I think it’s the same style of medicine.
🤞 for pain free 🙂
Haha yes my new years resolution will definitely be that😂 I just wish they would understand🤦♀️😪
Let us know how you get on 🙂
hun this sounds like me I was sent to pain clinic and the lovely doctor put two and two together and I have been diagnosed or suspected to have fibromyalgia. The reason she said this is because of suffering pelvic pain for so so long that the pain then becomes more wide spread. I get things like costacondrutus which is inflammation in my chest and at times feel like it’s a heart attack as my chest pains get awful 😢 and it’s not a heart attack as all ecg s and things come back normal . Fibromyalgia is to do with nerve pain ok . I do have severe endo which was diagnosed this year and it’s wrapped around the siactic nerves and all around the nerves in pelvis . I asked to be referred to pain clinic as I couldn’t and still can’t really cope with the pain especially when at times cannot get out of bed as the pain so bad can hardly walk so I’m like limping . I really hope you get the answers you need. Maybe see another doctor to refer you to pain clinic. I was waiting along time to get an appointment with the pain clinic doctor but it’s worth it as they look at you as a whole person holistically. Don’t take no from one doctor get a second opinion there are doctors that are helpful and others which aren’t but please get a second opinion . Pain is very real. I have days where the pain is so bad I want to end it all. Sometimes I wish doctors take people seriously and take the whole person as pain can effect mental well being not just the physical. Sometimes I wish doctor s you know check in with people with chronic pain and other issues seriously and not just treat the physical symptoms. Why I say this is again pain very real and it can get you down . Here’s hoping 🤞 you get the right help . Xxx
Hi coco,Thank you so much for replying! Yes that's exactly how it feels! Like a mini heart attack! Wow I didn't even think about things like fibromyalgia. Sorry to hear you are going through that amount of pain!
Yes i will definitely ask for a second opinion on the pain clinic because I really just need help on coping, I also struggle to even walk down the stairs on some days! My doctors are so dismissive and constantly tell me it's anxiety or I'm just stressed. I have every symptom of endo and my gynecologist also think it's endometriosis so I have no idea why my GPS are making it so hard for me?
I really hope your pain becomes more manageable, I'm so sorry you experience all of that. Sending love!! And thank you for all your advise xx
It might be worth reading up and exploring thoracic endometriosis and the related symptoms? It can affect the diaphragm and lungs and can cause shoulder pain, chest pain etc. Not saying you have it necessarily but could be worth looking into! Best of luck with everything xx
Okay I will definitely look into thoracic endometriosis! I've never heard of that. Thank you so much xx
I experienced similar, also sent for ecg and blood tests and nothing found. I have since had my Hysterectomy for Endo and Adenomyosis, which will be 2 years in April. However I am still experiencing these symptoms. They say Endo is an autoimmune disease (however I know there is still much they don't know about endo). I wonder if it makes us more susceptible to other autoimmune diseases? Just a thought. I'm planning to go back to my GP as I am also suffering fatigue with all the pains, there must be a reason. Out of interest have you ever had Prostap? There is talk that this has caused autoimmune responses, as it affects you endocrine system
Hi endoviking,
In all honesty the fatigue is the worst for me! I'm absolutely exhausted most days. I will be doing the same Since reading all the comments on here I have seen a few people mention if you have one autoimmune disease its not rare to have another one, something to think about I guess.
No I haven't had prostap! (Not quite sure what that is tbh)
Thank you for replying and your advise xx
Everything will always come back ok whatever the tests you've done until you get the laparoscopy and sometimes thoracoscopy.
Is it normal to bleed two weeks after prostap injection?
Pain 3 weeks post laparoscopy- is this normal?? 
Is it normal to still be in chronic pain 3 months after laparoscopy?
Is this the normal back pain associated with endometriosis? 
Is my pain normal & what to expect from first Endo Appointment. 
