I have endometriosis on both my lungs since I was 24 years old, I’m know 48 years old. My doctor put me on menopause medication to control the pain I get from the endometriosis. I have a great Pulmanary doctor that keeps my endometriosis in check. So far I have 4 surgery’s , so far my pain level is control!
Yes I had fluid on my lungs endometriosis flared up I had 2 blood patches 2 chest tubes 1 pleurodesis surgery then another procedure similar to pleurodesis it's been crazy crazy the Dr didn't believe me when I told them it's the endometriosis I am on pain management medication currently have a catheter in for drainage
Thank you for posting this video about your experience. I have confirmed pelvic & colorectal endo, and lately have begun to strongly suspect I also have it around my lungs. It is soo helpful to hear what other people are going through, too- if for no other reason than to just remember we are not alone. I am seeing a new specialist in February so hopefully I can get some relief soon. I hope you are well.
My mom has endometriosis, and I’m like 99% sure I have it….. I’m so scared, tonight I randomly had heart RACING and really really bad shortness of breath. I have had a cough for a few months now and I still experience shortness of breath especially when I’m just talking. I’m so glad you made this video!! Thank you so much for sharing your journey and I’m so sorry you had to go through this, so you think I have endometriosis in my lungs?
Hi Noelle, thank you. Sorry I didn't reply sooner, I was going through my messages and only just saw this. I am also truly sorry you are going through this and hope you can get a resolution. There are soooo many things that can cause those symptoms, endo included. So it's really best to see a Dr and get some tests done, and keep at it until you get an answer. If you remember shoot me a message and let me know how it's going. I wish you and your mum all the best 😃💐
I have endo and had a hysterectomy because of it. Im experiencing those weird foot swellings and purple lumps in my toes and heel. It gets worse each month and only lasts about a week and a half. I think its endo cells that migrated down, but I'm reluctant to go to a doctor because I dont have money to go and have them tell me its something its not and keep playing that game. Its so frustrating.
Before the cough, what other symptoms did you have related to diaphragmatic endometriosis? Were you already taking pills to stop your periods before knowing about your lungs being affected?
Hi Ophelie. No I wasn't taking meds to stop my period because of the lung endo. I had absolutely no idea i had it before this incident. I was hospitalised for a pain flare and all the symptoms I mentioned happened within days of each other. I've never had any symptoms before that. Not one single one. No shortness of breath, nothing. It all just came on suddenly with that flare in hospital. Also just to clarify my endo is on the lungs specifically and not the diaphragm, at least not at that time. At that time I wasn't on any hormone meds, just pain management. The ones I had tried had counterproductive side effects (like breakthrough bleeding for a month), seemed to make my pain worse, or just didn't help the pain at all. Since then it has left me with shortness of breath, and I will randomly catch for breath sometimes. I'm always watchful when it becomes frequent like almost every hour, but thankfully I have had no other episodes and I think my 2 lupron trials helped with that. I'm sorry I can't give anymore insight.
@@sashaaimey Thank you so much for your reply. :-) How old were you when this happened and how old were you when you got your periods for the first time? Did they discover endometriosis on your lungs by doing an MRI? I've got appendicular endometriosis but my lungs were not checked. Sometimes, I need to take deep breaths and not because of stress and I'm more sensible to the smell of some products (and will cough as a result). Don't know if that could be related. I'm taking a hormonal treatment to stop altogether my periods.
Hi again. Sorry I took so long to reply I just don't expect comments because the video is so old. I was about 28 I think. My first period started at about 12 and I was diagnosed bt CAT SCAN. I've always been sensitive to smells myself but I don't think that's a symptom. I hope you are doing well.
Thanks for this. I am worried that I have this because I have sudden shortness of breath that I am using a puffer for. However However i don’t have other asthma or lung symptoms but had/have deep endo that I did a hysterectomy to manage at age 38. I’ll talk to my doc about this. May God help us. Question: can they catch lung endo on a CT or do you know if it can be missed sometimes.
I have endometriosis on both my lungs since I was 24 years old, I’m know 48 years old. My doctor put me on menopause medication to control the pain I get from the endometriosis. I have a great Pulmanary doctor that keeps my endometriosis in check. So far I have 4 surgery’s , so far my pain level is control!
Four surgeries!!! For what!?
How did you find out about endometriosis on your lungs?
@@mysteryamidst2812 If you don't manage your diet, select the right type of surgery... it does come back!
Yes I had fluid on my lungs endometriosis flared up I had 2 blood patches 2 chest tubes 1 pleurodesis surgery then another procedure similar to pleurodesis it's been crazy crazy the Dr didn't believe me when I told them it's the endometriosis I am on pain management medication currently have a catheter in for drainage
Thank you for sharing your story warrior. ❤❤
Thank you for posting this video about your experience. I have confirmed pelvic & colorectal endo, and lately have begun to strongly suspect I also have it around my lungs. It is soo helpful to hear what other people are going through, too- if for no other reason than to just remember we are not alone. I am seeing a new specialist in February so hopefully I can get some relief soon. I hope you are well.
How are you now? Did you have it around your lungs?
What were your symptoms for your endometriosis on your lungs?
My mom has endometriosis, and I’m like 99% sure I have it….. I’m so scared, tonight I randomly had heart RACING and really really bad shortness of breath. I have had a cough for a few months now and I still experience shortness of breath especially when I’m just talking. I’m so glad you made this video!! Thank you so much for sharing your journey and I’m so sorry you had to go through this, so you think I have endometriosis in my lungs?
Hi Noelle, thank you. Sorry I didn't reply sooner, I was going through my messages and only just saw this.
I am also truly sorry you are going through this and hope you can get a resolution. There are soooo many things that can cause those symptoms, endo included. So it's really best to see a Dr and get some tests done, and keep at it until you get an answer.
If you remember shoot me a message and let me know how it's going. I wish you and your mum all the best 😃💐
So sorry this happened to you. Thankyou for making this video! ❤
I have endo and had a hysterectomy because of it. Im experiencing those weird foot swellings and purple lumps in my toes and heel. It gets worse each month and only lasts about a week and a half. I think its endo cells that migrated down, but I'm reluctant to go to a doctor because I dont have money to go and have them tell me its something its not and keep playing that game. Its so frustrating.
I'm so sorry to hear that. It's absolutely infuriating when they don't listen to us. I pray you are coping well.
Your accent is beautiful!
Oh thank you!
Before the cough, what other symptoms did you have related to diaphragmatic endometriosis? Were you already taking pills to stop your periods before knowing about your lungs being affected?
Hi Ophelie. No I wasn't taking meds to stop my period because of the lung endo. I had absolutely no idea i had it before this incident. I was hospitalised for a pain flare and all the symptoms I mentioned happened within days of each other.
I've never had any symptoms before that. Not one single one. No shortness of breath, nothing. It all just came on suddenly with that flare in hospital. Also just to clarify my endo is on the lungs specifically and not the diaphragm, at least not at that time.
At that time I wasn't on any hormone meds, just pain management. The ones I had tried had counterproductive side effects (like breakthrough bleeding for a month), seemed to make my pain worse, or just didn't help the pain at all.
Since then it has left me with shortness of breath, and I will randomly catch for breath sometimes. I'm always watchful when it becomes frequent like almost every hour, but thankfully I have had no other episodes and I think my 2 lupron trials helped with that.
I'm sorry I can't give anymore insight.
@@sashaaimey Thank you so much for your reply. :-) How old were you when this happened and how old were you when you got your periods for the first time? Did they discover endometriosis on your lungs by doing an MRI?
I've got appendicular endometriosis but my lungs were not checked. Sometimes, I need to take deep breaths and not because of stress and I'm more sensible to the smell of some products (and will cough as a result). Don't know if that could be related. I'm taking a hormonal treatment to stop altogether my periods.
Hi again. Sorry I took so long to reply I just don't expect comments because the video is so old.
I was about 28 I think. My first period started at about 12 and I was diagnosed bt CAT SCAN. I've always been sensitive to smells myself but I don't think that's a symptom.
I hope you are doing well.
how are you managing now
Thanks for this. I am worried that I have this because I have sudden shortness of breath that I am using a puffer for. However However i don’t have other asthma or lung symptoms but had/have deep endo that I did a hysterectomy to manage at age 38. I’ll talk to my doc about this. May God help us. Question: can they catch lung endo on a CT or do you know if it can be missed sometimes.
Hi. Mine was diagnosed by CAT scan but yes yes it can commonly be missed.
I hope you've had some resolution by now.
I am 99% sure l have this l would really like to speak you PLEASE
Hi send me a dm on Instagram. Same as here sashaaimey. I'd be happy to speak to you.
How are you now?
What were your symptoms for endometriosis on your lungs, please?
@@sashaaimey hi how are you now