Aa
please help
So my girlfriend has endometriosis, and also had been prescribed to pills for a long time so she is used to pills being the only relief from pain. she has good days and bad days. the good days are amazing but the bad days are really bad, and i dont know what to do to help. I know that she wants understanding and not pity, but its hard to understand. if you cant feel the pain someone feels then you cant understand. i just want her to feel better and to help. i dont know what to do and if anyone can help that would be awesome.
endometriosis specialists are trained to see all the different types of endometriosis and they cut it out...this disease needs to be treated by a dr. who specializes in it just like you would not see a regular dr. for cancer you would see an oncologist who is trained in the disease of cancer...you need to see an endometriosis specialist in order to have the disease cut out and your organs left in place!
To answer your question...after being mismanaged by dr.'s for 20+ years...the endometriosis specialist removed my disease and gave be back some normalcy to my life...unfortunately the non-trained dr.'s left behind a lot of mess and destruction to my pelvis...which is why I am now here saying...see the specialists...don't waste your time on untrained dr.'s allowing them to cut out organs, burn the surface of the disease but not remove the root of the disease therefore leaving you in a harder state to find complete healing...Was your surgery done by a specialist? there are only a few hundred in existence...so most have to travel to see a true specialist...just because a dr. says they are doesn't mean it's true...they have to have special training to truly be a specialist...ways to know...if they won't deal with disease on the bladder, colon, ureters they are NOT specialists, if they put you on drugs to suppress such as lupron...they most likely do not have the skills to get all the disease so they use these awful drugs in hopes of drying up disease that was missed...which will not work because the only way to cure this disease is to cut it out past the roots to healthy tissue.
To answer your question...after being mismanaged by dr.'s for 20+ years...the endometriosis specialist removed my disease and gave be back some normalcy to my life...unfortunately the non-trained dr.'s left behind a lot of mess and destruction to my pelvis...which is why I am now here saying...see the specialists...don't waste your time on untrained dr.'s allowing them to cut out organs, burn the surface of the disease but not remove the root of the disease therefore leaving you in a harder state to find complete healing...Was your surgery done by a specialist? there are only a few hundred in existence...so most have to travel to see a true specialist...just because a dr. says they are doesn't mean it's true...they have to have special training to truly be a specialist...ways to know...if they won't deal with disease on the bladder, colon, ureters they are NOT specialists, if they put you on drugs to suppress such as lupron...they most likely do not have the skills to get all the disease so they use these awful drugs in hopes of drying up disease that was missed...which will not work because the only way to cure this disease is to cut it out past the roots to healthy tissue.
unfortunately the pill only potentially slows the disease down if you are lucky...but it has it's own issues...I too took the pill for many many years and by the time I was officially diagnosed with endo (13 years after I actively tried to figure it out and did in fact self diagnose and have it confirmed with laproscopic surgery and nothing showed on the MRI's or ultra sounds) the disease had literally glued my organs together and things were a mess...it causes so many more issues then even most dr.'s understand much less us or those who love us...so first thank you for at least trying to help and understand her disease! Next I would strongly recommend she get into the care of an endometriosis excision specialist not a regular gyn or oby/gyn as they are baby dr.'s and do not have the skills it takes to deal with this disease. if you share your city/state I will do my best to find and share endo specialists in your area...we unfortunately do most often have to travel out of our area (I went several states away~best choice I ever made) to see the best of the best...only wish I had done it long before I had dr.'s cut on me who did not understand the disease...
You sound like a very caring boyfriend which is a great start! I have endo but also my boyfriend is chronically ill and often feels terrible, and has had two surgeries since I've been with him. I just had my endo surgery a week and a half ago, and this is really my first large medical issue and he was great at caring for me.
One thing that he explained to me is that sometimes he prefers to just heal or be in pain on his own because when he has a guest he feels he has to be "taking care of them" in a way by making them not feel bad for him, or calming their anxieties, or making them feel useful. I would ask your girlfriend if she would likes to spend some time alone sometimes when she's not feeling well.
What I think would be so meaningful and helpful is if you became an advocate for her. That means that you learn as much as you can about the disease (you may have already) and help her find doctors and alternative doctors that will listen to her and help her. It would mean so much if you went to the appointments with her and asked questions and spoke as a second voice on her behalf. It can be hard to remember everything when you're sitting in front of a doctor, especially if you feel helpless and in pain.
She should be on some form of treatment or she's headed for eventual surgery. Also, what she eats and how much she exercises will make a difference. So you might be able to help by looking into that for her and helping her prepare foods that will help her feel better. For example dairy has a lot of hormones and soy (which is in a lot of things) can mess with hormones, especially estrogen. So limiting those two things will help her.
And then just help her do annoying things like get the mail, do laundry, or whatever if you want to feel like you are helping. Don't even ask her, just anticipate what she might need and do it when she's in pain and don't mention it.
So many people don't understand endo and just believe women experience pain in their periods and should just suck it up and not be babies. I want to thank you for acknowledging that she has a real problem and that it's hard.
One thing that he explained to me is that sometimes he prefers to just heal or be in pain on his own because when he has a guest he feels he has to be "taking care of them" in a way by making them not feel bad for him, or calming their anxieties, or making them feel useful. I would ask your girlfriend if she would likes to spend some time alone sometimes when she's not feeling well.
What I think would be so meaningful and helpful is if you became an advocate for her. That means that you learn as much as you can about the disease (you may have already) and help her find doctors and alternative doctors that will listen to her and help her. It would mean so much if you went to the appointments with her and asked questions and spoke as a second voice on her behalf. It can be hard to remember everything when you're sitting in front of a doctor, especially if you feel helpless and in pain.
She should be on some form of treatment or she's headed for eventual surgery. Also, what she eats and how much she exercises will make a difference. So you might be able to help by looking into that for her and helping her prepare foods that will help her feel better. For example dairy has a lot of hormones and soy (which is in a lot of things) can mess with hormones, especially estrogen. So limiting those two things will help her.
And then just help her do annoying things like get the mail, do laundry, or whatever if you want to feel like you are helping. Don't even ask her, just anticipate what she might need and do it when she's in pain and don't mention it.
So many people don't understand endo and just believe women experience pain in their periods and should just suck it up and not be babies. I want to thank you for acknowledging that she has a real problem and that it's hard.
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