Has anybody else been diagnosed with Endo on the Diaphragm, causing extreme shoulder pain? Or had treatment for this?

[Scoones]

I am having a laparoscomy this month to try to diagnose it, but the consultant was extremely dismissive because Its rare in someone of my age. But I am 100% sure it is what I have. Just looking for other people's experiences of this.

[Scoones]

Hello! Sorry to hear you have the same, although it is nice to hear from someone else who has it!! I am 22. My shoulder pain starts a day or so before my period and continues through out. Recently, when I exercise and my breathing increases, I have begun to have irritation on the right side of my diaphragm followed by shoulder pain, which continues until my breathing decreases. I can also feel a slight twinge throught out the month now and again. Unfotunately for me, I'm prone to migraines due to hormones, and taking the pill is not an option for me . The pain is so excrutiating, I have only found relief by sitting up with many ice packs strapped around the shoulder so I just completely numb the feeling out!!

It took for me to go online and google shoulder pain during periood, and print off an info sheet on endometriosis, and take it in to my GP to finally be referred!! I Had been sent to chiropractors, physio, etc for about 5 years! But even now, they have said they will have a look with a laparoscomy, but they expect to find "nothing" and I probably just have more period symptoms than most women........Not feeling too positive about it!! I have asked if he is going to definitely look behind my Liver as that is where the bulk of the disease can often be found and he said they will. So fingers crossed, they will find it and give me some options for getting rid!!

That does sound like a cocktail of drugs!! Its a pain we have to go to such lengths to avoid the dreaded shoulder pain!! I take pain killers as well as Ibuprofen, but it just doesn't seem to touch it, no matter how strong they are. The worst is when I get hit by the shoulder pain, period cramps and a migraine all at once. I remain face down in a dark room, with lots of water to drink, and melting ice strapped to me!! Not pretty!!

[hemelite]

Most women find they have shoulder tip pain around the time of their period, i certainly do and after 4 laps ive never had it diagnosed on my diaphragm. The diaphragm itself is irritated from swelling below in the pelvis pushing upwards, which pushed on the diaphragm which pushes on the lung on the affected side and so on to the shoulder tip.

Another symptom to look for when your diaphragm is compromised is hiccups. This has happened to me but only in the weeks following surgery when everything is swollen.

[KarenlovesKermit]

This is strange because I suffer from horrific shoulder and neck pain and my endometriosis is around my ovaries and my ovaries had callopsed and stuck to my bowel??? I had never linked the 2 together, but I been having physio for my shoulder and it's no better and my pain is there all the time. It would be lovely to get proper answers wouldn't it? x

[katrinakilshaw in reply to KarenlovesKermit]

Hi I know this is an old thread but was this ever linked to your endometriosis? I have recently started getting shoulder and neck pain and was told I need to have physio which starts next week. The shoulder and neck pain for me is a new symptom which only started after my prostap injections was finished and my usual lower back pain, leg pain, and left side of my abdomen started to hurt again. I have had the pain since the end of Feb 2013.

Thanks in advance K x

[Scoones]

It would be lovely! The pain is just so so horrific! Physio solved nothing for me, but I had to go down that route before they would look at any other possibilities for the pain. Thank you all for sharing your experiences with me. I felt like I was the only one dealing with this shoulder pain before! And its so horrible speaking to professionals who don't seem to know anything about Endometriosis. Really helps to speak to other people dealing with it, and people my age like Mina88! x

[LadyA]

yes i get really bad shoulder pain, i havnt had my lap yet so im waiting to find out, i also get really bad hiccups that i find really painful! hope you get it all sorted soon xxx

[grannyk]

yes i have.... i started with endo the year after my second baby, an elective c-section.....i understand now that during that op some of my uterine tissue went astray and set up home in my pelvic area and under my diaphragm. each month this tissue responds to various hormones and grows, and then sheds like it is supposed to do every month. but when it is not in the correct place to shed ie the womb it just bleeds into the tissues and then i had what i called 7 days of the pain associated with internal bleeding after a car crash. the pain in my shoulder was horrendous! my consultant 12 years later said i knew more about it than he did because i read everything i could on the subject and he couldn't possibly do that. i was on the continuous pill for a long time that did give me some pain free times, eventually having a hysterectomy at the age of 47. i was put on hrt which sort of caused the diaphragm pain again because the hrt was mimicking my natural hormones that controlled the endometriosis. i am now 60 and if i concentrate on my body that pain is still slightly there even now. i was admitted to hospital one day at the age of 46 because the doctor tried to examine me and i couldnt breathe when laid down so he thought i had a pulmonary embolism and i was in too much pain to realise this and was just so glad he was doing something about the pain that was on occations bringing me to my knees. while on the ward a registrar actually asked me if i had thought that if i had another child the endo may clear up....i am glad to be able to type up my story because after all these years i still break down on remembering all that pain i had for at least 3 weeks out of every 4

[Hidden in reply to grannyk]

Hi, I know this old post. But not much info out there on Diaphragmatic endometriosis.

My question is. Did full hysterectomy cure it?

I have various other gynae dieseases. So actually eligible for full hysterectomy and oophorectomy. Although at this point it's not practical (having two children under five to look after )

I've had endometriosis lasered in pelvic area. But not diaphragmatic sorted.

Just not sure, ,how much more shpulder tip pain I can take.

Had it for years and is really bad now.

Thank you

[Jesshod]

Iv been diagnosed with endo on my diaphragm. I'm 22 and get such severe pain in my shoulder, it's soo soo painful. I have about 5 days out of a month where I'm okish but that's generally it. Awaiting for operation at the moment but signed off for work for 3 months aswell. Endo has taken over my whole life at the moment so I can sympathise x

[Judit999 in reply to Jesshod]

Hi Jesshod,

Im sorry for your pain, i hope you are doing much better now!

I also have endometriosis on my diaphragm, and waiting for surgery, and a bit nervous about it. Could you pls tell sg about your surgery experiences? did it resolve your pain?

Wishing you a lot of pain free days!!

HUgs

Judit

(ps. sorry for my English )

[Katede]

Hi there,

I had a laparoscopy 4 days ago and was told I have endometriosis on my diaphragm. I think it’s called stage 4 endometriosis due to the areas it has spread to. This made so much sense when the doc told me. I will often get a headache after I eat and one of my worst symptoms is the feeling of trapped air pushing on diaphragm. I can’t tell you what the solution is at this point but the nerve endings for your diaphragm are in your shoulders so it all makes sense to me now. My consultant is recommending a temporary menopause but I think I’m gping to try and tackle it holistically first for the next we months.

For anyone who struggles with the diaphragm pain after eating I find a gentle abdomen massage can really help relieve the pressure.