Chest endo

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Hi really hoping someone can help. I've had stage 4 recto-vaginal endometriosis which was removed in 2012. I've since gone on to have 2 two children and since having the first I've noticed a shortness  breath which has gradually got worse over the 3 years. 

I have an almost constant soreness between my shoulders which feels muscular? Not sure it is though. I have a need to clear my throat/cough a lot. 

I get pain in that area when I cough and sneeze and occasionally when I swallow. I get palpitations a lot, especially when bending and all heart tests have come back clear.  I have many other symptoms but focusing mainly on these at the moment as they're the most persistent.  Can anyone relate? Thank you. 

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  • Posted

    Endo in/around the lungs is considered rare, although a lot of women do suffer from it; a few I know personally here in San Diego. I wrote a blog entry about Endo & the lungs/chest, but I can't share links here.  What have your doctors said about your pain? Other than the heart scans being normal?

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    • Posted

      They haven't said a lot. One doctor told me it's possibly postnatal depression! I went to another who believes my problems she's just unsure what it could be. I also have mild scoliosis so trying to figure out what is what is difficult with conditions like these. Do you know if these sound like symptoms of lung endo and have you had it yourself? Thanks 

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    • Posted

      Postnatal depression???  What a crock.

      If it's classed as mild scoliosis I can't imagine why it would cause problems.  Rather than say IDK, doc's throw out all sorts of crap, don't they?

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    • Posted

      Yeah it really annoyed me as postnatal depression doesn't hurt like this. Hence why I changed doctors. Can I ask do you have endo in the chest area? 

      Would lung tests give any idea do you know? My symptoms are at random times of the month. Thanks. 

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    • Posted

      Sorry, I didn't see this before the other response I just typed.  I never had true postnatal depression because I never carried a child to term.  I did have 4-6 months of hormonal depression after loss of each of the 7-10 week pregnancies, and when I had my total hysterectomy at 27 for endo, even with HRT I went into about 8 months of a terrible despair.  I was not depressed about the surgery as I fought to get it.

      All of that looked a bit like what a close friend went thru with post partum or post natal depression, tho seriously lacking in the whole "It's a precious baby, why aren't you in love with it?" judgment factor.

      Good for you for getting yourself away from that jerk of a doc!

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    • Posted

      I'm so sorry, obviously had no idea about your pregnancies, worry you had to go through what you did. I hope pure much happier now you've had your hysterectomy? Are you pain and symptom free? Did you have all endo removed at the same time? It's such a horrible disease isn't it. Totally understand why you opted for the hysterectomy, just keep hearing different things about them being a cure so good to hear from different people. 

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    • Posted

      It was all a very long time ago.  Yes, my hysterectomy took away my symptoms for a lifetime, 27 years precisely.  But, and this is crucial, they took out everything: tubes, ovaries, cervix, uterus.   Then I went on HRT.  Yes there was post-surgical pain but it went away and TBH when so many organs are removed along with so many splotches of endo off intestine, there's going to be an uncomfortable adjustment period.

      When I was 54 it came back but doc's thought it was diverticulitis right up until the pathologist's report came back on the removed piece of colon.  I've had 9 more years without problems so I can't complain.  Many young women here have it so much worse.

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    • Posted

      Wow it sounds worth it then. Glad you managed so many years symptom free. 

      At the moment it's more the feeling poorly and shortness of breath/dizziness that's bothering me, the pain is bearable. 

      My specialist that did my surgery in 2012 would only remove the uterus and nothing else so not sure where I would go for this, if indeed this is endo. 

      I'm not allowed HRT due to the unknown nodule in my vena cava, just in case it's  a blood clot. Always petrified it's endo. 

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    • Posted

      Yes, I had an excellent result.  From being on this site for a couple of years I've come to the unscientific conclusion that docs are idiots for leaving in ovaries.  The theory is great:  you'll have your own hormones!  But reality is all these women who have major surgery but still have endo and it still cycles along every month with the ovaries.

      Of course they planned on me to leave 1 ovary, and I had agreed even tho doc figured it would have to cone out in a few years.  That ovary became so much worse that it couldn't be salvaged in surgery. 

      There's no guarantee with any surgery for endo, apparently.   I was very very fortunate.   As to HRT, women were having ovaries removed, along with everything else, long before HRT was invented.  Even with it, my skin aged drastically within 6 months.  My skin all over my body looks like I'm 10-20 years older than I am.  I'll take that over rolling on the floor in agony for another 20 years any day.

      Why do you think that endo might be in the vena cava?  How did they discover a nodule there, and what are they doing about it?

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    • Posted

      The vascular specialists don't know what it is but don't seem concerned by. It. I've had it monitored over a couple of years and no change. I think it's just my anxious mind and worrying too much about things, due to palpitations and strong pulsating round my body at times, I worry it's something like that. 

      They think it's possibly something I've had all my life and just been spotted by accident when doing tests for other things. They don't want to touch it because of where it is, I'm constantly worrying about it though. They've told me to forget about it as they don't think it's a problem. 

      I didn't even know it affected your skin, makes sense. Definitely worth it for a pain free life though. I always presumed that when you properly go in the menopause everything calms down. 

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    • Posted

      Kinda hard to forget & not worry about a nodule in the vena cava!  Though i've got nodules in other places, discovered by accident, that i decied to ignore.

      I don't know how much hormones endo needs.  I was on a teensy amount, tapering off -- the smallest dose of premarin every couple of days.  At the time there was some research showing that if endo didn't receive the right hormones, it could manufacture what it needed.  But i haven't kept up with the research so i don't know if that eas replicated.

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    • Posted

      Oh really, what are your nodules, has anyone said? Have they changed at all? I also have a swollen lymph node that has never gone down so not sure what that is. Yeah I constantly worry, thing is there is nothing I can do about it so I somehow have to learn to stop thinking about it or it will take over my mind. 

      I don't think I would worry if I felt well. nobody else seems to. 

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    • Posted

      At the time these were discovered I had so many other big issues bothering me that I sort of overdosed on specialists /consultants.  I barely had the energy to deal with things that were causing real-time problems and zero energy for things that weren't a problem at all so I decided to ignore them.

      That was 5 years ago and not a single one of those nodules has gotten bigger or irritated me.  It would be harder to set aside worry over anything to do with the cena cava.  I trust that you are not in regular consultation with Dr. Quack Quack Google?

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    • Posted

      I think you have to just listen to the specialists and if they do t worry then somehow don't worry either. Just trying to teach myself that and struggling. They've said to forget it all together, however, I will have it rescanned every year or so so I can relax a bit. 

      I have some circulation issues which apparently makes be down to scoliosis so they may be linked. Thanks for your messages. Hope your nodules continue to be bother free. 

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