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I have read that having endo on the lungs is possible, but has anyone had this? What does it feel like?
I have a lot of shortness of breath, 2 spots that have stabbing pain (one spot straight up from my right ovary), and a feeling of lots of pressure on my lungs. It's almost like the lining around the lungs is too small for my lungs to fully expand. And it's always worse at the same times as the other areas of endo. Is it the endo?
I have endo everywhere else in my abdomen, both ovaries, uterus, bowels, all confirmed in prior lap. I also think I have it on my sciatic nerve and bladder. Neither of these have been confirmed with lap. I have a doctor appt scheduled.
Can they look for that with the da Vinci robots? I'm hoping to have a hyster in May, and want to know all the spots where they should look. I want it all removed, if at all possible!!
I've opened a few new posts. Hope that's ok, I have lots of questions! I just found this site a week ago, and I love it! I like to have as much information as I can get. I'm getting a little addicted. Thanks!! :dance2:
Hello- I'm new here also, and I have endo on my left lung. I thought at first that it might be allergies or bronchitis until I realized that my lung pain felt and acted like my other endo pain.
My pain is only in one area, and although sometimes I find it hard to take a deep breath it has only caused me to have shortness of breath twice. I find that rubbing "vapo rub" on my chest seems to help the pain, just like it does when I have chest congestion.
I have not sought treatment for it yet since it bothers me less than the endo pain I have elsewhere. I also have endo in my nose and sinuses, and believe me, that pain is much worse.
I also think that you should discuss this with your doctor; I would recommend that your doctor be very familiar with endometriosis. I initially went to an ENT who was able to remove most of the endo but did not know at the time what it was.
I haven't had endo on my lungs...but I did have a large ovarian cyst that landed me in the ER because it felt like my entire abdomen was on fire and that I couldn't breathe! I would definately discuss this with your dr...Good Luck!
I would strongly suggest a consult with an endometriosis specialist if you feel you have endometriosis of the lungs. If you have surgery, you are going to need an extra specially skilled team to be able to remove endo from the places you have mentioned--bladder, bowel, lungs, etc.
You posted a list of endometriosis specialists about a year ago. Do you know of any others in Iowa? Or is there a website that lists them? My GYN is one of only 5 drs in Iowa who perform the da Vinci, and I know he is considered one of the best GYNs in Iowa, but he does not specialize only in endo.
I have an appt scheduled for Apr 9, but I am thinking I need to move it up. I almost went to the ER tonight, it hurts so bad.
my surgeon says he can remove the endometriosis on my bowel and bladder, and he is just a woman surgeon. do i really need a specialty team for my hysterectomy?
Some surgeons are more skilled than others depending on their training, concentrated areas of practice, etc. For my first laparoscopy and my hysterectomy, my surgeon would not touch the endo on my bowel walls as he felt it was too risky. For that, I had to see an endometriosis specialist. But my surgeon was also an obstetrician and did not focus primarily on woman's surgery, unlike my endo specialist who does not practice obstetrics at all. If your surgeon feels he can safely remove all of the endometriosis, you may be fine. Have you had a second opinion about what is best for you?
Originally Posted by EndEndo77
You posted a list of endometriosis specialists about a year ago. Do you know of any others in Iowa? Or is there a website that lists them?
Off the top of my head I do not know of an endometriosis specialist in Iowa. The list I have posted is in no way an all inclusive list. Unfortunately, there are not many endo specialists in the entire world! Some suggestions would be to check with any teaching hospitals located anywhere near you. There may be doctors there who are studying and treating endometriosis. Some women have found that a gynecological oncologist can be very helpful for surgery as they posses skills to remove unwanted tissue from the body. You could also check the various endometriosis websites, such as the ERC site, to see if there are suggestions for doctors in your area.
In your shoes, I would specifically ask the surgeon you have chosen if he has the ability to remove endometriosis from the bladder, bowels, lungs, sciatic nerve, and where ever else you have confirmed or suspected endometriosis. I would also want to know how he would remove the endometriosis and how many patients he has treated with endometriosis.
For those of us with endometriosis, we do need very skilled surgeons. However, if those skilled surgeons do not have extensive knowledge regarding endometriosis we may not end up with the anticipated outcome, unless you are aware your sur. A hysterectomy is not a cure for endometriosis and thus we need a surgeon who is able to recognize the various appearances of endo, one who knows all the little nooks and crannies where it can hide, and one who has the ability to actually excise the endometriosis from where ever it is found. Any endo that is missed during any surgery can allow for endometriosis recurrence down the road, possibly necessitating future surgeries.
I had a TAH for Endo last year and now have ORS and the endo has returned. However it is now suspected in my chest as well as everywhere else. The pain is excrutiating and caused me to collapse last month, because of the ORS I actually have spotting each month and at these times the chest pain is at its worst. It can cause the lung to collpase each month and I am frightened this will happen.
If anyone has any info on treatment for this I would love to know. My cons said he hopes it will die off when he takes out the Ovarian remnant. He said he will need a team of surgeons this time for the bowel, bladder and possibly the chest.
I'm so glad to hear from you!! I've read about this possibility. Have you actually had your lung collapse? When you had your TAH last year, did they try to remove all the endo then?
At this point, I've had shortness of breath and the same stabbing pain I get everywhere else with endo. My dr is not sure if it's actually endo on the lungs, or if it's radiating pain from the endo that's on my ovary directly below the pain. The pains usually happen at the same time. I don't think he's planning to try to get to the lungs during my hyster. Also hoping it will "die off" after hyster.
What is ORS? I'm assuming something with the ovary?
I'm waiting to find out when I can have my hyster, because my gyn is sending my records to another gyn surgeon and a GI surgeon to consult. The other gyn surgeon is the one who does the da Vinci, and they are trying to decide if I am a candidate for that or not. I don't think the GI surgeon can do bowel surgery with the robot so I think I'll need TAH.
Thank you for posting! I hope you also have success in getting rid of this!!!