Can I ask those who have been diagnosed with endo on the diaphragm what are your symptoms? Or those who have shoulder/chest pain what are your symptoms and cycle of pain? Is it something you get just before/during or towards the end of your period or throughout the whole month?
Thank you
I started having the shoulder, rib and shortness of breath about a year ago. Told my consultant about and suspects that endo could now be attached to my diaphragm, I’m pretty sure he said that it normally effects the left side but I mostly suffer right side. What side do you get the shoulder pain in? I get it both sides but the right side is always worse for me. At times I can’t even lift my right arm because of the pain and feeling that my arm is weak. Thought the rib pain was due to under wiring bras so stopped wearing those and it’s still there, it’s mid way up on my right side of ribs. I normally get the rib pain first about 1-2 weeks and shoulder pain about 4-7 days before my period and it gets progressively worse and lasts for about another 4 days after my period. Shortness of breath comes about 3-5 days before. I keep a diary of pains and keep track of it. Maybe do this as well?x
Hi Laura,
Thank you for your reply. I've been getting shoulder pain/chest pain for about 3 years. It took me a while to make the link to my period. But I did as i made a diary and realised the link. Most of my pain is right sided and the shoulder pain like you've said can come on a week before my period starts. Also this is when I get the chest pain (sometimes breathlessness, it hurts to take a deep breath), at the side of my chest around where my bra sits and under my rib and also near my breast bone. It usually settles down while a few days into my period but then towards the end of my period it will return with mainly left sided neck/shoulder pain which does hurt to move. It's like it's compressing on a nerve. Also I've noticed more recently that on occasions just after my period that I feel a bubbling sensation in the side of my right chest. It doesn't hurt but feels strange. I don't know what this is though.
I've mentioned some of these symptoms to my consultant and he's said it could be endo on the diaphragm but also said in the same breath as my pain symptoms last a while throughout the month it might not be endo. I'm awaiting a diagnostic lap. I've always suffered with pain with my periods. Just as I've got older there is more pain in more places and its also more severe. I don't know what the consultant is thinking if not endo?! I guess I just have to wait and see. X x
Sounds very similar to my symptoms but as I mentioned I haven’t had the confirmation that I am suffering with endo on diaphragm but I honestly think I am. Consultant mentioned it to me but he said that symptoms only appear when you are actually having a period. He’s not an endo specialist though. Apparently it’s quite rare to have it there but endo can spread. When I’ve done research it says that a mri could pick it up but my GP and consultant have never requested I have one. Maybe try with your GP and see if they could refer you for one as you are suffering with chest pain that doesn’t go away fully. Hopefully the GP is better with you. You are doing the right thing with keeping a diary. Hope you get answers soon x
I have mentioned it to the GP as it's awful pain and I've suffered for a while with it now. It was the GP who mentioned endo on the diaphragm although they never willingly referred me to gynae and I had to ask after going numerous times. They don't take me seriously. I thought diaphragmatic endo symptoms match the shoulder/chest pain symptoms I have, this is why I was wondering the cycle of pain symptoms people have to see how mine relates to try and establish if this is how the pain usually presents or not. Let me know how you get on. Hope you get some answers soon. X x
I will let you know. I’m due to have my third lap next week. Fingers crossed it’s not cancelled again x
Aww good luck with that. I'm having my first in October. I'm so scared about It! I hate having a general anaesthetic and I'm not looking forward to recovery either! Hope you're ok x x
Had my lap Thursday. There was no endo on my diaphragm. My pelvis, ovaries and bowel were all stuck together. It had caused my uterus to tilt so they’ve sorted that. I had cysts on both ovaries. He thinks the symptoms with rib and shoulder was just the pressure pushing on my diaphragm and it should stop now. I’m hoping it will. I’m lucky that my tubes weren’t blocked so he’s happy that I should be able to get pregnant naturally after this. Hope you get answers soon x
Hello! I’m sorry that your going through so much pain. I got diagnosed with extensive endometriosis on my diaphragm and stage four endometriosis. I had large endometriomas on both ovaries so I was put on medication to stop my periods for about a year now so I don’t exactly remember if my symptoms were worse on my period or not. I still do not get a period; however, I do still experience symptoms from the endometriosis on my diaphragm. In general according to my doctor and several articles that I have read the symptoms appear in the right side and very rarely on the left. As it is exceedingly rare to have endometriosis outside of the pelvic area little is actually known on the subject. My symptoms though happen almost every day to varying degrees. I have symptoms on both sides and often for two to four hours after waking it feels like someone is pressing on my lungs from all sides and makes it hard to breath. This happens sometimes randomly throughout the day. I also get sharp and dull aching pain along the sides of my rib cage and along where the diaphragm is. Occasionally it will feel as if someone is taking a long needle and inserting it into my lungs making it impossible to breath. My shoulders will hurt and often goes down towards my shoulder blade. I do know that around my period I would cough up small amounts of blood. The unfortunate thing is that while having surgery is an option it can be dangerous since they have to deflate the lung and then remove the endometriosis from the diaphragm and check the lung for nodules etc. which brings the potential of not having the lung refill correctly and leaving you with shortness of breath for the rest of your life. As I am in my early 20s the doctor would prefer I not have the surgery just yet. The good news is your lung hasn’t collapsed so it is likely that it has not infiltrated your lungs yet 😊 I hope that you feel better and if you would like to talk at all let me know. I’m sorry for the long reply. I hope you have a great pain free day!
Hi, everyone.
I am sorry to hear that we all suffer from diaphgramic endometriosis.
I too have endo on my diaphgram. I uded to suffer from very bad right shoulder pain when I used to have periods.
I had to stop my periods as recommended by my consultant in order to.stop developping my endometriosis.
So the pain on my shoulder is lesd but I have pain upper bidy a lot of time.
My consultant does not want to touch the endo on diapgdram as it is too risky to try temoving them.
She is hoping when I have menopause, the symptom will be more manageable...
I hope all of us will find the best possible care for us.to gey as comfortable as we can be.
xxx
Thank you for your reply. I am sorry to hear of your symptoms.
So it's quite normal for yoy to experience the symptoms most of the time and not just the time of your period? (When you would have them)
I'm awaiting a diagnostic lap but the consultant basically said maybe it's not endo if I have symptoms that last longer than my period. So I was feeling in a place where I didn't know what to think. My pain symptoms gave been getting worse these last few years and I'm often feeling so fatigued with this it's horrible.
Thank you for your response. I hope you're having a good day x x
Hello
Yes it’s quite normal for me to experience the symptoms most of he time and not just around my period. It seems like yours could be endo since they have been getting progressively worse over the years. I hope that your diagnostic lap gives you some answers! I hope that you have a great day!
Hi, so sorry to hear about your pain. I'm in my early 20s and recently been diagnosed with endometriosis on my diaphragm, ovaries and uterus. I also get awful right shoulder pain just before my period, like yourself it hurts when I inhale, exhale, cough, sneeze or laugh! The only thing that I feel helps even slightly is a wheat bag and ibuprofen however I accidentally burnt my shoulder last month as I couldn't bring myself to take the wheat bag off and the ibuprofen made me sick as I didn't feel well enough to eat. The pain was so bad that I booked a last minute acupuncture appointment as my friend recommended it, for the rest of my period I didn't need to take any painkillers and I'm booked in again for another appointment this month - if you haven't tried acupuncture, it could be worth a shot. I've also read an article on here that suggests using coconut oil for cooking which is supposed to help with the pain, I'm going to grab a bottle on the way home from work to give it a try!
Ooh thank you for replying. I have a big jar of coconut oil so I will try using that a bit more when cooking. I usually go for olive oil. I've noticed the cold weather has made the pain worse than usual. Last month was awful! My GP put it down to inflammation of the chest lining (told me to take co-codamol for a week) and said it cannot possibly be linked to my period, however I am not convinced! I've never tried or considered acupuncture but might be something I will have a look at if it helps. Thank you.
I've been getting random pain spasms in my chest/side/back this last week. I find my wrap around hot water bottle helps.
Hope you're feeling ok. X x
Hey, I was just diagnosed on Friday with severe endo on my bowel, spots on my right ovary and endo on my diaphragm.
I used to get shoulder pain really randomly throughout the month but never logged it to see it’s relation to my periods, I just always thought it was a stress thing and that I was carrying too much tension in my shoulders. It tends 90% of the time to be my right shoulder. I’ve also suffered for years with a kind of shortness of breath, not when walking about and stuff as much but the way I used to describe it was that it felt like I was always only taking really shallow breaths and so I would then struggle to really fill my lungs, I felt like my diaphragm was quite weak and it used to panic me sometimes if I couldn’t get a deep breath for half an hour or so, but this started literally about 4 or 5 years ago now so is crazy to think that it now all stems from this.
My doctor said it’s too close to my heart for them to operate on but I’m quite worried about it causing a hole and spreading onto my lungs so I think I’m going to discuss it further with them when I go back to outline my surgery plan for my bowel.
I’m now keeping a diary and will try to link up the shoulder pains with my cycle as I never in a million years thought it was linked.
Hi, thank you for your reply.
I'm sorry to hear of your diagnosis. Hopefully you will be on the right path to feel better.
I know it took me a while to make the link.
There is a Facebook group Nancy's Nook. I don't know of you've heard of it. There might be some articles on there to ease your worries?
I hope you're ok and that your treatment goes well. Good luck x x x
x x
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