thoracic endometriosis symptoms.

[Joonaspryte]

Since January I have been having symptoms of thoracic endometriosis, these are actually the worse symptoms I have of my endo.

Before being diagnosed with extra pelvic endometriosis, I’ve had three episodes of extreme pain in my chest and went to A and E , they just checked my heart and I ended up having an angiogram. Now I know better and realise that they are actually the exact symptoms of thoracic endometriosis, which the gynaecologist agrees with .

I have the heavy feeling in my chest all the time.

But whenever I am having a flare up , I have the feeling of someone standing on my chest, pain in my shoulder tip and shooting pains up my neck , even up to my ears when I yawn or breath deep and trouble breathing.

these symptoms are much worse when I bend down, and I know it sounds silly, but these symptoms are worse then all other pains, the pains actually give me the feeling of depression and anxiety, they actually make me feel tearful and sad. Does that make sense?

I cannot explain myself really, but I’m feeling very lonely in my symptoms.

Does anyone else have these thoracic endometriosis symptoms?

[RosieFalkor]

I have Endometriosis found in multiple places on my diaphragm. I have a tight chest feeling, a bit like a bra strap that’s too tight but also constant heaviness. My pains are in my scapula and trapezius muscles, also sometimes my jaw. I haven’t noticed any difference with bending down. I cough up a lot of mucus.

[Joonaspryte in reply to RosieFalkor]

Do you also find the thoracic endometriosis harder to deal with then the rest of your endometriosis?

I haven’t got any any pain in my scapula, but definitely get it down the back of my neck and right though my chest into my back.

I do have a cough, but no muscus.

I don’t mean to be horrible, but it’s actually comforting to know I’m not alone with this awful feeling.

I’m on the waiting list to see respiratory consultant.

Have they said what they can do for yours?

[RosieFalkor in reply to Joonaspryte]

It definitely gives me more symptoms than the other places where I have Endo. Sometimes it causes migraines too as the pain migrates through my neck and jaw to my head.

I haven't seen a respiratory consultant. I was only diagnosed with Endo a year ago. Its all over my insides so I'm waiting for excision (including the diaphragm) and hysterectomy and then I'll see how I feel after that I guess.

It is good to know you're not alone. There's an excellent F B group for Thoracic Endo. Ken Sinervo who is a top specialist in it is part by of the group too.

[Joonaspryte in reply to RosieFalkor]

I get pins and needles in my face sometimes in my tongue and jaw, and right side of face and get slightly off balance, i wonder if this could be part of it? Sometimes it’s lasts two weeks, the consultant I went to see about it thought it was a type of migraine.

Unfortunately I don’t do FB 🙁

but I’ve seen YouTube videos Ken sinervo has done 🙂

I had a complete hysterectomy 16 years ago, and was on oestrogen only hrt ever since, which I was told fed the endo and helped it spread , I’m 58 , had an appendectomy last October which is how they found it. I was in complete shock.

[RosieFalkor in reply to Joonaspryte]

I also get facial pins and needles and numbness, jaw pain and even difficulty speaking and I've been told its probably migraine!

Why did they put you on only Oestrogen? That would make the Endo grow back. Have you had to stop HRT now?

[Joonaspryte in reply to RosieFalkor]

OMG, sorry but I’m so relieved I’m not the only one, the pins and needles made me think I must be going mad, it seemed so random to me, and that with shooting pains up my neck and shoulder when I yawn or breathe deep. I felt people thought I may be making it up.

I don’t have any problems speaking though, that must be awful for you 😧 I did have head bobbing for a short while though .

I actually was told my complete hysterectomy was due to PID and adenomyosis, endometriosis was not identified then, even though I feel my symptoms then were very like now. So they put me straight onto hrt.

What are they doing about your oestrogen?

I of course trusted their judgment and carried on, for 16 years.

Yes, I had been told by my gynaecologist to completely stop hrt immediately, but I went into a very depressed state, and having silly thoughts, so gp put me on patches, so I will do it more gradually now.

[emilylb]

hey guys, just found this thread and I’m wondering how the thoracic endo was diagnosed? Was it through laparoscopic surgery or mri? Iv had heart issues for years that they don’t seem to be able to get to the bottom of, other than they started after having a pericardial effusion caused by a virus. Since then I have had severe tachycardia whilst at rest, irregular heart beat, third heart sound observed just before Christmas when hospitalised, pinching sensation on my left outside of my ribs, pain on inner left side (sort of centre but on the left side) feeling like someone is squeezing my heart with thier fist etc. have also had endo symptoms related to my periods all my life and recently found endo on/near my uterus on pelvic MRI. Currently waiting for appointment with endo specialist who is pushing for laparoscopic surgery. Cardiologist, hasn’t been particularly helpful with heart stuff just wants to put me on beta blockers, but doesn’t seem that interested in getting to the root cause. And I’m starting to wonder if maybe the heart stuff is being caused by my endo…

Have been hospitalised several times with heart stuff, including rushed to resus so it’s pretty scary that they can’t get to the bottom of it!

[Kelpiestryder]

emilylb

Joonaspryte

RosieFalkor

Just found this thread too and

Oh. My. God…

all of these describe what I’ve been saying to my doctors the past couple years and I’ve just told it’s ‘anxiety’. It’s not fucking anxiety, I don’t have anxiety! Even my partner says yes I over think sometimes but I’m not an anxious person! Ive been given anxiety because of how the doctors have dismissed me, they make me feel like it is all in my head and I’m making it up!!!

I had an obscure right shoulder ‘injury’ when I was 15 went to loads of physio/chiro told nothing was wrong, even had an mri with dye through it.. nothing. So I just lived with this random shoulder pinching/stabbing pain. Went on birth control for heavy periods and yea I always had a tight shoulder but just dealt with it/ignored it and got on with life!

15 years later come off birth control and my left shoulder has the same thing and again I’m told nothing wrong it’s just my anxiety!

I’ve had…

the diaphragm pains, tightness/fullness/stabbing on my left side under my ribs but every now and again on my right

My entire mid back and ribs feel like they’re on fire or doused in acid.

I get chest pain as if someone is squeezing my heart…absolutely no palpitations or abnormal heartbeats (this is why I’m like it’s NOT anxiety/panic attack, i don’t have ‘panic attacks’!). Have had an ecg and ct scan, all perfectly healthy! Also get random stabbing and sharp pains sometimes when I breath in, right in the middle of my rib cage!

My chest feels incredibly heavy despite being very active. I Get breathless going up the stairs, but this comes and goes! I swear I could breathe better when I used to smoke ten a day!

I have an annoying ‘little’ cough, nothing major just hocking up phlegm/it getting stuck in my throat! Again told lungs are function healthy and sound great! When I do breathing they do feel good, it’s like there surrounding in tightness or something

I also had the left side of my face pins and needles, jaw pain, shooting neck pain, numbness etc etc thought I was having a stroke, went to a&e, told to go home after all checks and nothing was wrong. Later had a back/head mri…nothing!

I’ve had chiro/osteo investigations too, and they all say ‘your a little tight’ or ‘yes your holding tension there’ but after weeks of treatment/rehad they’re all stumped as to why the pain doesn’t go away yet the muscles are ‘relaxed’! I am (was) an avid yogi so it’s not like I don’t take care of my body and its mechanics!

And all of this comes and goes in waves. I’m starting to track more symptoms and it does seem like it’s linked to my period. I hadn’t had these pains this year until this past week they all came back aggressively and now I’m due on my period!

I don’t have an endo diagnosis, only really learned about it Nov last year so it’s all new to me but my god does it feel good reading youve all had this too! I have been gas lit and ignored by my doctors for so long, told it’s all in my head, it’s anxiety, there’s nothing wrong with me, I feel completely crazy and was starting to think maybe I was making it up but now…I’m hopeful this is all being caused by endo inflammation and I’m not entirely insane!!

I know it’s wrong to celebrate our pain but I’m so relieved and happy to see my symptoms in other people and not just ‘in my head’!

I hope you’ve all got some treatment and help..my journeys only just begun so I’ve got A LONG way to go before I receive anything of use!!

💚🖤