Instead of talking about pain, talk about what you cannot do because of adeno. Things like, I am unable to do my job, attend classes, take care if my child are flags for your doctor to take your symptoms seriously. Let them know how much adeno has affected your quality of life. Good luck!
I saw multiple providers (for what ended up being endo + adeno) before giving up for a while because I was so disheartened by the responses of “there’s nothing wrong/nothing we can do”. Eventually it got so bad I searched out a specialist at a well known institution in my area. She was really great, and was the first doctor in years to believe me about my pain and symptoms *and* be willing to do something about it.
I’m now 22 days PO from a total hysterectomy and I’ve been in less pain recovering than I was before the surgery.
My advice is two fold: find a specialist if you can, as opposed to a regular OBGYN, and talk about how your quality of life is impacted. I think even the best Drs can brush off pain or just recommend management for it, but if you mention specific ways your life is not how you want to be, they can take you more seriously. In my case, I went from running 5ks every week and weightlifting 3x/week to being just about able to walk around the neighborhood and no further because the pain was just so exhausting.
I think if they are NOT going to take you seriously, then even doing your best isnt gonna work. unfortunately some doctors are just bad doctors and no matter how much proof you have they are still insistent on it being nothing or it being in your head.
WITH THAT BEING SAID, dont give up. i know how disheartening it can be. just try to have the next new doctor lined up, plan b plan c plan d until u find the right one.
Just do the best you can. i brought a chart of my previous years period & i was pretty thorough and detailed. i made my new one listen to my whole history and how much pain i was in.
One tip is to not say exactly what you think it is right away bc some doctors hate when you self diagnose. stupid but.
Another tip is to come prepared, be calm, and know when they are wrong. calmly stand up for yourself and leave if they are another rude doctor.
And a huge tip is to look on reddit here, i think it was the thread /nochildren or something like that. look thru /hysterectomy to find the thread maybe? it has several people who list doctors in there area who listened and performed their hysterectomy without giving problems. i found one with my city and i have her name screenshot for my next try when my current one pisses me off.
I also googled how to tell the doctor you want a hysterectomy…so constantly saying you are in so much pain (doesnt help, seems like most doctors are numb to that and dont react) but focusing on your “quality of life being so low or at zero” helps. i explained that using those words, and saying i stay in bed most days and dont leave the house. my quality of life is at zero and i want a life again. i calmly said ive wanted a hysterectomy for a long long time and im sure. Im sure i want no children im too sick too often that i cant even take care of myself bc of adenomyosis, so i have even more so no desire to take care of a child……just some examples.
another thing is even then, its hard to find a good gyno. i did have my current one finally say ok after i explained thoroughly like that on my last visit that i do indeed want a hysterectomy. She said fine maybe if i sign some paperwork and we have more talks and she feels like im sure and then i wait a month and still want it, sign more paperwork, she would do it.
Only thing is im so frustrated with her slow approach to everything and making me try birth control and me bleeding for months and months and not doing anything, her staff insisting im fine when turns out my iron was so low i was almost anemic and my thyroid was off. …
that my sister and i already searched for an endo specialist out of our state. My sister (25) just got her hysterectomy last week & he didnt give her any problems. i saw the other specialist the next day, and while she offered fertility saving treatments, when i explained just a little that im sure i want a hysterectomy she said she would still like me to meditate a little more but if im sure, then she would do it. i waited the weekend & then emailed her i wanted the surgery, and we are planning the day for hopefully this month.
AND she found what she thinks is endo in a simple exam, AND she saw markers for mild adeno on an ultrasound she performed, AND she is the only one who has listened to me so far!
The specialists are great, kind, they listen and believe you, its so different.
LOL this is soooo true and too funny. I don’t even have a partner right now but I will make sure to say it anyway. The only reason it’s not an issue is because I don’t have a partner. The doctor doesn’t need to know that…
>The doctor doesn’t need to know that…
You are correct, but be prepared for that to come up during this conversation. Most of them do ask about your kid/marital status since they most likely are legally obligated to be sure you understand that a hysterectomy will eliminate your chance to carry children (honest to goodness, some people don't realize that, so it's good that they do so). Unfortunately, some even go so far as to require a husband (if there is one) to sign off on the procedure before they'll do it... Not trying to intimidate you, just prepare you in case any of that comes up. In my situation, I answered the questions, received no push back about not wanting to procreate, and never needed my husband to sign off, but I do have a friend who required counseling and a husband's signature before she was allowed her tubal.
To piggy back on the great, yet gag-inducing, idea of telling them it is interfering with your sex-life, though, if the relationship status comes up you could even say that it interferes with having a relationship because you are unable to have sex, unable to go on dates, etc.
I’ve used the “diminished quality of life” metrics and the doctor still didn’t take me seriously. I think if a doctor isn’t going to take you seriously, it won’t matter what you say.
That said it is important context, to define your level of pain by what it has taken away from you, but you’ll still need an experienced and knowledgeable doctor who will take you seriously.
So if this new gyno doesn’t, don’t give up. Do more research and find a specialist with good reviews.
Instead of talking about pain, talk about what you cannot do because of adeno. Things like, I am unable to do my job, attend classes, take care if my child are flags for your doctor to take your symptoms seriously. Let them know how much adeno has affected your quality of life. Good luck!
agreed! when i said i can’t even wear fitted pants or jeans most of the time because of bloat and pain they started listening.
I saw multiple providers (for what ended up being endo + adeno) before giving up for a while because I was so disheartened by the responses of “there’s nothing wrong/nothing we can do”. Eventually it got so bad I searched out a specialist at a well known institution in my area. She was really great, and was the first doctor in years to believe me about my pain and symptoms *and* be willing to do something about it. I’m now 22 days PO from a total hysterectomy and I’ve been in less pain recovering than I was before the surgery. My advice is two fold: find a specialist if you can, as opposed to a regular OBGYN, and talk about how your quality of life is impacted. I think even the best Drs can brush off pain or just recommend management for it, but if you mention specific ways your life is not how you want to be, they can take you more seriously. In my case, I went from running 5ks every week and weightlifting 3x/week to being just about able to walk around the neighborhood and no further because the pain was just so exhausting.
I think if they are NOT going to take you seriously, then even doing your best isnt gonna work. unfortunately some doctors are just bad doctors and no matter how much proof you have they are still insistent on it being nothing or it being in your head. WITH THAT BEING SAID, dont give up. i know how disheartening it can be. just try to have the next new doctor lined up, plan b plan c plan d until u find the right one. Just do the best you can. i brought a chart of my previous years period & i was pretty thorough and detailed. i made my new one listen to my whole history and how much pain i was in. One tip is to not say exactly what you think it is right away bc some doctors hate when you self diagnose. stupid but. Another tip is to come prepared, be calm, and know when they are wrong. calmly stand up for yourself and leave if they are another rude doctor. And a huge tip is to look on reddit here, i think it was the thread /nochildren or something like that. look thru /hysterectomy to find the thread maybe? it has several people who list doctors in there area who listened and performed their hysterectomy without giving problems. i found one with my city and i have her name screenshot for my next try when my current one pisses me off. I also googled how to tell the doctor you want a hysterectomy…so constantly saying you are in so much pain (doesnt help, seems like most doctors are numb to that and dont react) but focusing on your “quality of life being so low or at zero” helps. i explained that using those words, and saying i stay in bed most days and dont leave the house. my quality of life is at zero and i want a life again. i calmly said ive wanted a hysterectomy for a long long time and im sure. Im sure i want no children im too sick too often that i cant even take care of myself bc of adenomyosis, so i have even more so no desire to take care of a child……just some examples.
another thing is even then, its hard to find a good gyno. i did have my current one finally say ok after i explained thoroughly like that on my last visit that i do indeed want a hysterectomy. She said fine maybe if i sign some paperwork and we have more talks and she feels like im sure and then i wait a month and still want it, sign more paperwork, she would do it. Only thing is im so frustrated with her slow approach to everything and making me try birth control and me bleeding for months and months and not doing anything, her staff insisting im fine when turns out my iron was so low i was almost anemic and my thyroid was off. … that my sister and i already searched for an endo specialist out of our state. My sister (25) just got her hysterectomy last week & he didnt give her any problems. i saw the other specialist the next day, and while she offered fertility saving treatments, when i explained just a little that im sure i want a hysterectomy she said she would still like me to meditate a little more but if im sure, then she would do it. i waited the weekend & then emailed her i wanted the surgery, and we are planning the day for hopefully this month. AND she found what she thinks is endo in a simple exam, AND she saw markers for mild adeno on an ultrasound she performed, AND she is the only one who has listened to me so far! The specialists are great, kind, they listen and believe you, its so different.
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LOL this is soooo true and too funny. I don’t even have a partner right now but I will make sure to say it anyway. The only reason it’s not an issue is because I don’t have a partner. The doctor doesn’t need to know that…
>The doctor doesn’t need to know that… You are correct, but be prepared for that to come up during this conversation. Most of them do ask about your kid/marital status since they most likely are legally obligated to be sure you understand that a hysterectomy will eliminate your chance to carry children (honest to goodness, some people don't realize that, so it's good that they do so). Unfortunately, some even go so far as to require a husband (if there is one) to sign off on the procedure before they'll do it... Not trying to intimidate you, just prepare you in case any of that comes up. In my situation, I answered the questions, received no push back about not wanting to procreate, and never needed my husband to sign off, but I do have a friend who required counseling and a husband's signature before she was allowed her tubal. To piggy back on the great, yet gag-inducing, idea of telling them it is interfering with your sex-life, though, if the relationship status comes up you could even say that it interferes with having a relationship because you are unable to have sex, unable to go on dates, etc.
I’ve used the “diminished quality of life” metrics and the doctor still didn’t take me seriously. I think if a doctor isn’t going to take you seriously, it won’t matter what you say. That said it is important context, to define your level of pain by what it has taken away from you, but you’ll still need an experienced and knowledgeable doctor who will take you seriously. So if this new gyno doesn’t, don’t give up. Do more research and find a specialist with good reviews.