800 mg of ibuprofen every 4 hours does NOTHING for me. I've been to two doctors and tried Yaz, Cataflam, and Ponstel for the pain. None of it has worked at all! Last month I was on Ponstel and still in tears. (and I don't cry easily) My doctor has never even mentioned endometriosis but I have almost every symptom! (horrible bowell symptoms!) What do i do? The pain gets worse every month!
@mallori735 - I'm so sorry you are in so much pain. :(
Is your doctor a family practitioner or a gynecologist? If you have insurance, seek out a reproductive endocrinologist to help you. Where are you geographically in the world?
Hi hun I have it just like you !! so much pain that some times I want to kill my self, but I have a wonderful husband and so lucky to have a son after 4 losted babies, benn back and to , to the docs and feel they and I can do no more and I am just getting so bad and its wearing on my heath thank you hun for posting it has helped me x
Thank you for your vids. Recently diagnosed with endometriosis. I have never been so terrified in my life, and I am very happy that there is other people that I can hear from that are in a similar boat. Hopefully one day there will be more options for all the women who suffer from this.
Banding together in forums, on blogs, and through videos, we endo sisters can help lessen the terror and isolation we experience. You can also find me on twitter as 'stephlwe' (short for 'steph living with endo').
I have used a wheelchair before. I borrowed my grandmother's. While my primary reason for doing so was another illness (neuropathy), there are most certainly times when endo alone has had me in such condition where a wheelchair would be helpful and logical! Good for you for doing what you needed to do to get out and about!!
This video is exactly why I made this channel. This is 100% my thoughts. ~hugs~ We have to remember, we are not worthless we are not insane or weak. We are stronger then most for not giving up.
how do you explain to the people about the wheelchair?
i used one my mom has, after surgery.
but other days from pain/ exaustion i used it while out at ikea. but where i have gone i did not run into anyone i knew... so no one to make any comments due to knowing "she can walk"
When people who know I can walk see me in the wheelchair, I have told them "I have Endometriosis; I suffer from chronic, disabling pain which strikes monthly. Most can usually guess what the "monthly" means. ;)
Few venture further with the convo. Some have asked what endo is. I always tell them. For the brave who stick around, I end my convo by saying that with my condition I am lucky, cuz I won't die directly from it and I get to enjoy being out of the wheelchair for 3 weeks out of every month.
It's not an easy thing to discuss with people. Some people judge me and don't bother to ask my story. Some people still have the brainwashing that I should "stop being a baby, every woman gets her period". The most important thing we can do is to remain confident in pursuing the care we need. If that means a cane, walker or wheelchair, we should show no humility or guilt, cuz we have our best interest at heart. Ain't no one else gonna have that but ourselves. We are our own fairy godmothers.
My prayers go out to you! It sounds like you have more severe pain than I have ever experienced. I never realized exactly how SEVERE the pain can get from the endo. Are there no other surgeries to help you right now? I know the lap surgeries are a temp fix, but it is a fix that can help..You are in my thoughts, and I hope you have more good days in this year, and the years to come thereafter!
Endo affects us all differently, and the staging (I-IV) doesn't match with the pain level, to confuse people further. I have Stage III. It's on the bladder and ovaries. So even if I got a total hysto, they can't get the endo off the bladder without puncturing it, so I'll still be in pain.
My friend is Stage I but it is on her bowels too. She was bedridden and on disability for an entire year before surgery, then had two good years. Now she's ill again. :(
800 mg of ibuprofen every 4 hours does NOTHING for me. I've been to two doctors and tried Yaz, Cataflam, and Ponstel for the pain. None of it has worked at all! Last month I was on Ponstel and still in tears. (and I don't cry easily) My doctor has never even mentioned endometriosis but I have almost every symptom! (horrible bowell symptoms!) What do i do? The pain gets worse every month!
mallori735 1 year ago
@mallori735 - I'm so sorry you are in so much pain. :(
Is your doctor a family practitioner or a gynecologist? If you have insurance, seek out a reproductive endocrinologist to help you. Where are you geographically in the world?
stephlwe 1 year ago
Hi hun I have it just like you !! so much pain that some times I want to kill my self, but I have a wonderful husband and so lucky to have a son after 4 losted babies, benn back and to , to the docs and feel they and I can do no more and I am just getting so bad and its wearing on my heath thank you hun for posting it has helped me x
jessiejones3 2 years ago
Thank you for your vids. Recently diagnosed with endometriosis. I have never been so terrified in my life, and I am very happy that there is other people that I can hear from that are in a similar boat. Hopefully one day there will be more options for all the women who suffer from this.
Spunmearound 2 years ago
Banding together in forums, on blogs, and through videos, we endo sisters can help lessen the terror and isolation we experience. You can also find me on twitter as 'stephlwe' (short for 'steph living with endo').
*hugs*
stephlwe 2 years ago
I have used a wheelchair before. I borrowed my grandmother's. While my primary reason for doing so was another illness (neuropathy), there are most certainly times when endo alone has had me in such condition where a wheelchair would be helpful and logical! Good for you for doing what you needed to do to get out and about!!
jeanneendo 3 years ago
This video is exactly why I made this channel. This is 100% my thoughts. ~hugs~ We have to remember, we are not worthless we are not insane or weak. We are stronger then most for not giving up.
EndoSteph 3 years ago
how do you explain to the people about the wheelchair?
i used one my mom has, after surgery.
but other days from pain/ exaustion i used it while out at ikea. but where i have gone i did not run into anyone i knew... so no one to make any comments due to knowing "she can walk"
im just wondering.
brokendoll8777777 3 years ago
When people who know I can walk see me in the wheelchair, I have told them "I have Endometriosis; I suffer from chronic, disabling pain which strikes monthly. Most can usually guess what the "monthly" means. ;)
Few venture further with the convo. Some have asked what endo is. I always tell them. For the brave who stick around, I end my convo by saying that with my condition I am lucky, cuz I won't die directly from it and I get to enjoy being out of the wheelchair for 3 weeks out of every month.
stephlwe 3 years ago
It's not an easy thing to discuss with people. Some people judge me and don't bother to ask my story. Some people still have the brainwashing that I should "stop being a baby, every woman gets her period". The most important thing we can do is to remain confident in pursuing the care we need. If that means a cane, walker or wheelchair, we should show no humility or guilt, cuz we have our best interest at heart. Ain't no one else gonna have that but ourselves. We are our own fairy godmothers.
stephlwe 3 years ago
My prayers go out to you! It sounds like you have more severe pain than I have ever experienced. I never realized exactly how SEVERE the pain can get from the endo. Are there no other surgeries to help you right now? I know the lap surgeries are a temp fix, but it is a fix that can help..You are in my thoughts, and I hope you have more good days in this year, and the years to come thereafter!
mystikallady18 3 years ago
You are such a sweetie, thank you!
Endo affects us all differently, and the staging (I-IV) doesn't match with the pain level, to confuse people further. I have Stage III. It's on the bladder and ovaries. So even if I got a total hysto, they can't get the endo off the bladder without puncturing it, so I'll still be in pain.
My friend is Stage I but it is on her bowels too. She was bedridden and on disability for an entire year before surgery, then had two good years. Now she's ill again. :(
stephlwe 3 years ago