Right shoulder pain?!

[Pyromanicat]

Hiya, new to the group, bit random but looking for anyone with similar problems...

I have severe right shoulder pain from about 3 days before my period each month. It peaks when my period starts and lasts for approx a week. It seems to hurt the most when I breathe out. I have now had 2 x shoulder exams, an x-ray, an internal gynae ultrasound, various gynae exams and am awaiting an MRI of my shoulder. My doctors are confused as am I!

I first noticed the link between the pain and my cycle when trying to get pregnant but probably had the shoulder pain for a year or so before that. It is getting progressively worse over time. My bubba is now almost 9 months and the pain stopped completely during my pregnancy and only started again when I got my periods back.

2 different GPs have suggested it could be endometriosis but the gynaecologist I saw said it can't be as I don't have any pelvic symptoms. I have always had heavy periods and cramping but assumed this was normal as have never known any different! I have never been able to use tampons as found them too painful and generally use overnight pads during the day which I have to change hourly (sorry if tmi) so I guess this actually is fairly unusual?!

I'm getting really frustrated with the pain which is very intense and stops me from sleeping. Have been prescribed cocodamol but it's only dulling it slightly. Getting annoyed with doctors telling me I am an interesting case and really want some answers now and preferably some kind of treatment.

Does this sound familiar to anyone? Do you reckon it could be endometriosis? Help!

Thanks x

[waterbabydani]

endopaedia.info/subtype1.html this article explains the shoulder pain

[jayneeb3]

Hi l have this too, l do have pelvic pain but have just come off prostap so none at the moment, l was putting my down to maybe a congestion issue and body not being able to process waste properly, my cousin had probs with her gallbladder and had similar pain, as the body can't cope with oestrogen levels if that makes sense to you? xx

[KatieTattie]

Would be great if someone who had been diagnosed with endo in this area to give us their experience. I'm in the same boat and it's driving me nuts not knowing. To be honest I hope it is related to endo as I don't want another ailment! Guess I'll find out in oct as I'm having the op n consultant promised me he would look! X

[janaenaebonita in reply to KatieTattie]

Hi... I was recently diagnosed with diaphragmatic endometriosis in March. They found it during an emergency surgery to remove my appendix which was glued to my intestines by endo. I headed to the ER becuase i was on my cycle and had bleeding from my belly button. (also endo which i just t had removed 4wks ago) in the first surgery the surgeon took picutures of my diaphragm to show me, and confirmed it is endo. The pain is horrendous at times! I have not had it removed because it is an open surgery. What has helped my in the meantime, believe it or not, is coconut oil. I use it every single day in my cooking or on toast or in place of butter or vegetable oils. My naturopath told me to do this and it has helped tremendously! I still know it's there but the pain is dull and only lasts a few hrs as opposedd to a few days. In the past, I'd be in tears and have to sleep sitting up. No pain medication would help. This started in 2007. Ultimately I'd love to be without the pain but for now it's at bay. I plan to completely change my diet to a more endo friendly one and i hope i see even more results. My gyno never believed that it had anything to do with endo or my cycle. (belly button or diaphragm) One day i finally realized it happened a day or few days before my period, i decided to search online and found out about diaphragmatic endometriosis. My symptoms fit to a tee! I asked my gyno about and she said it made no sense and to see another dr about it because it's not related to my period. I never believed that. I know my body. I was so excited to jave my surgeon, who was not a gynecologist, confirm what i knew all along!... I would suggest trying the coconut oil in your regular routine. And finding a Dr who will listen. Ultimately, i may need to have yet another surgery. I hope this has helped!

[hypnoali in reply to janaenaebonita]

Hi

Sorry about this but what kind of surgeon believed in what you were saying - my orthopedic surgeon suggested it 8 years ago but the consultant gynecologist laughed me out of the room.

Alison

[janaenaebonita in reply to hypnoali]

My surgeon was a gastrointestinal surgeon. He had another case with a woman with a hernia and found endo as well in the belly button. That's why he suggested that i have had endo in my bellybutton at the time. He was correct. He did my appendectomy and thats when he also found the endo wrapped around my appendix and intestines. He took photos of my diaphragm showing endo..... Unfortunately this past October i was admitted in the hospital again for a collapsed lung on the right side. Turns out the endo spread to my right lung and caused it to collapse. Its called a catimmenial collapsed when associated with endo. So ladies, please don't give up becuase it can continue to spread. I am taking natural supplements, B12, D with K and chasteberry plus. I also cut out dairy, gluten, soy, and i am working on eating more veggies and all organic. And of course my faithful coconut oil which has helped tremendously with the diaphragm /shoulder pain.

[hypnoali in reply to janaenaebonita]

Thank you so much. Do they think there is a way to eradicate the disease? Have you had or are you going to have surgery to get rid of it? I have MS and fibromyalgia so they have put the pain down to this but I cannot tell you how much pain I am in this evening and I am crying with tears of joy that someone has actually backed up what I have been saying.

I have already changed my diet and am gluten and lactose free but am starting on the coconut oil now. I am also a reiki healer so if i know where I am looking and I suppose that is my diaphragm then I can try to heal it that way. Nothing ventured nothing gained as they say!

I have vitamin D and K but the Bs make me chuck up but this morning I thought I was going to chuck up I was in so much pain. I have made an appointment to see my GP tomorrow and will ask if they can refer me to an endo specialist who knows about this diaphragmatic endo. Wish me luck and do keep us posted on how you are getting on.

What does your naturopath think?

I am so sorry I ask far too many questions but if there is an alternative way to do it, I am in.

Take care.

Alison xx

[janaenaebonita in reply to hypnoali]

To be quite honest, no one has any answers for me, other than my current gyno who is the one who recommended the current supplements. She works with natural supplements before traditional medicines. She says if I follow this, I can be symptom free and perhaps reverse the endo. The supplements along with eating a gluten free, soy free, dairy free and all organic diet. I have to focus on vegetables and healthy fats, staying away from too much sugar and carbs. All organic meats as well to avoid the added hormones. I'd like to avoid any more surgeries but I don't know at this point. If I have to have more surgeries, I'd like it to be the very last.....meaning do what needs to be done to put an end to this....I'm 34 but Ive been suffering since 13. I need to get on with my life!....anyway, I hope that helps! I hope you feel better too!

[Endosufferer1 in reply to hypnoali]

Oh yeah and the worst is when a specialist for endo makes fun of you for having thoracic endometriosis!

[hypnoali in reply to janaenaebonita]

Hi

Good to read your comments - gives me hope. When you say you are going to change your diet, has someone recommended a diet you should change to and do you have a good naturopath.

Hope you can help me I am in so much pain.

Many thanks

Alison

[Hidden in reply to janaenaebonita]

How were you bleeding from your belly button?

[janaenaebonita in reply to Hidden]

I had endometriosis in my belly button at the time. It grew outward and began to blister. Then finally bled during my period. Until I had surgery to have it excised, it bled every month.

[janaenaebonita]

Also... The pain is not coming from your shoulder. The nerves that are attached to the diaphragm refer the pain up to your shoulder. It is a throbbing, nerve like pain a little different than muscle pain. For me, it sometimes travels down my arm & up into my neck. Not a tingling pain but one i can't describe. The other thing that helped or helps when the pain is bad, is ice. For most women it is on the right side, which can make you think gall bladder. If it happens around your cycle, it is very likely endometriosis.

[Alana-Jane]

I have endometriosis and I also suffer with right sided shoulder pain. I never even thought the 2 might be connected. I will monitor to see if it worsens closer to my periods. Sometimes the pain is so bad I struggle for breath. It's extremely uncomfortable, but I've never mentioned it to the doctor as I just wanted them to concentrate on making the endometriosis bare able. I will definitely mention it to them now!

[Pyromanicat]

Thanks all, good to know it's not just me. The last consultant I saw (shoulder specialist) said I need to have an MRI of my shoulder to discount any problems there but expects it to be negative. He said he would recommend my GP then refers me to a specialist endo clinic, there is one at UCLH I think. Anyone been there?

Hope everyone gets some answers soon xx

[hypnoali]

Hi i am also new to this - i am Alison and am 51 and my shoulder pain has been going on for about 14 years and always comes on about the same time as my periods. Basically i could tear my hair out and was referred to a consultant gynaecologist who patted me on the head, looked down her nose at me and wrote hugely embarrassing letters to my GP, consultant neurologist and anyone else she could get to listen saying i was delusional because I thought it may be some form of endometriosis.

Where do i go and who do i see to get a diagnosis and who do you see about changing your diet - at the moment the pain is so bad that i could quite honestly shoot myself in the head and I would be in less pain. Is there anyone in England or even London i could see? Does anyone know?

Very desperate and in pain

Alison

[Hidden in reply to hypnoali]

Hi Alison I am 56 and have suffered the same problem for years. My doctors thought that I was mad and wouldn't take me seriously when I linked the pain to my periods. In the end, after trying everything, the only thing that worked was the pill. I continued to take them, other than the sugar one, and eventually the pain went away as the periods stopped.

[Dollar1414]

Hi there, I had that happen to me before and was taken to hospital as they thought I could be having an eptopic pregnancy, not the case, but my gyne who is an endo specialist said that it could have been bleeding into my abdomen from the endo patches your explanation may be completely different but just a suggestion , this was before I had my endo removed , and it hasn't happened since x

[Roisin75]

I have suffered with this right shoulder pain for about 4 years now. The pain would start and I'd know my period would start the following day. The pain increased every month and after a year or so i went to my GP who mentioned diaphragmatic endo. I was referred to gynae and started on decapeptyl injections which were fantastic and completely took the pain away but it quickly returned when the injections wore off each time. After 2 years on them the consultant said I couldn't stay on them due to risks of osteoporosis. The pill didn't help and i was running out of options. The consultant talked me into trying the mirena coil before my last option which is a hysterectomy. I'm 39 and have 4 children. I agreed to the mirena coil and although i suffered through its side effects for the first 5 months I had no shoulder pain. The side effects lessened, i have had little to no periods and i was rejoicing in finally finding something that helped....until March this year when the shoulder pain returned, though not as severe i still needed mefenamic acid every day. I was devastated but then April came and the pain left again. Now here we are just into May and i woke this morning with shoulder pain. I'm not sure if it's to do with which ovary I ovulate from and it's alternating each month or whether I'm only ovulating some months and not others. I would still recommend trying the mirena as it has definitely helped with the severity and frequency of the pain and at least i can say i tried everything if i still end up with the hysterectomy!

[pale_eil]

I have had this shoulder pain for about three years now and finally this year had a lap which diagnosed endo on my diaphragm. I knew this was the problem but the gynaecologist said it was very rare and that he wouldn't be looking "that far up" on the lap. Well clearly he felt he needed to as it is all over both sides of my diaphragm. I haven't had my follow up appointment yet so don't know what the plan for treatment is yet. The pain is unbearable. I find mefanamic acid is the best but you need to take it regularly for cumulative effect. Also nerve painkillers like amitriptyline or gabapentin (although they have dodgy side effects so I rarely take them) tramadol made me seriously unwell so I really rely on the mefanamic acid and cocodamol. Also heat pads. Some days I cannot take a breath at all it is so horrendous and no one can understand. I feel like screaming and people just think I'm bonkers or a hypochondriac. So now I just say it's gallstones and people are a lot more sympathetic. Not that I need sympathy but I need to say something when I'm crawling around at work unable to breathe or stand up straight!!! Anyone with endo and shoulder pain is very likely to have it on diaphragm. I had very few pelvic symptoms so that's why it was such a battle to get a diagnosis. Xx

[Cool_cat36 in reply to pale_eil]

HI, I know this is an old post.. But I am pretty sure I have Diaphragmatic endo. My gynae didnt dismiss it, but thought it was more likely, blood going back up of my tubes and ending up in pelvic cavity and hitting diaphragm, hence nerve pain?

I've had laser surgery to help with Pelvic Endo, twice.

But recently had Endometrial eblation (to help stop heavy bleeding)

Period came like clock work and although not so heavy, (unlike some lucky ladies, after an ablation) I am having a period and the severe right shoulder pain, as per usual.

If ablation doesn't work (i'e, doesn't stop me from bleeding each month) the gynae said option hysterectomy. I'm wondering, if I had full hysterectomy, does this also stop the diaphragmatic endo? Or can they laser the endo from the diaphragm.My gynae didnt dismiss doing another laparascopy to confirm/rule it out. But I cant find anything on how its treated, even if diagonosed? Not allot of info on here. Jst that ladies have it and suffer

I noticed on your post, you were going for follow up? Did you have surgery for it?

Thanks

[colski]

Yes it is endometriosis.. I have had same since 25 years old now 38, went to doctors numerous times but got nowhere, at least your doctors want to help, my only relief is hormones which I take on and off due to the weight gain. I have a job interview today and managed 3 hours sleep due to intense pain. Good luck with your doctors.. vegan diet helps a bit but

[december67]

I was diagnosed with abdominal wall endo in 2009. Severe pain in abdomen for years.I kept asking if it could spread.Dr. said highly unlikely.2015 started having sore, internal ,tender to the touch pain in right shoulder just as you described cyclical. I was told arthritist. I found out through discussion that research reveals it can be blood borne and yes when it is in diaphram there is referred pain in right shoulder

[hollymbee2003]

I'm experiencing something remotely similar. I'm PMSing right now, and I keep getting random pains in and around my right shoulder blade. I don't know what I've done, but a muscle in my lower back on the same side feels like its strained.

[caroline12386]

i have the same thing only its a dull ache that happens in my right arm around a week before i start my period, i have always wanted to know what this is and people think i am crazy that i can tell when im about to start bleeding from an ache in my right arm, anyone have any definate answers?

caroline xx

[Endosufferer1 in reply to caroline12386]

Yeah it must be thoracic endo!

[Vinterskugge]

Oh my. I have only recently been diagnosed after going private and am awaiting first lap. I've been having this pain for months and only realised what's causing it thanks to this post! The first time I was really made aware of it I had been hospitalised with a suspected ectopic (there wasn't any pregnancy, just slightly worse than usual period) . It doesn't happen every month, but I have had the exact same pain again for the past week and it's driving me mad as no variations to my posture/sleeping/sitting positions have helped!