It’s so inexcusable that you were left to figure out a treatment plan on your own. Honestly, doctors should hire people like us as treatment and diagnosis specialists at this point! I’m glad you finally got a diagnosis, but I hate that you got the “just have a baby” response. I’ve left many a gynecologist’s office crying after being told that kind of crap. I do feel really lucky to have found a good doctor (I also really like my gynecologist) and to be living in a country (Germany) where medical care is relatively accessible. Honestly, any time my husband and I talk about if we’d ever move out of Berlin, we come back to the medical stuff. I just don’t know if I have it in me to wade through a sea of doctors that mostly don’t care to find one that maybe does again
I'm glad you found someone who listens. It took me 3 years to get a fibroids diagnosis and when I did they said there was nothing that they could do and maybe if I had a baby, it'd get better 🙃. Through my own time, energy, and research I've been able to get my period down to under 10 days but I really hate how they just leave us to fend for ourselves.
Your story is so moving. Reading about how you found support in a doctor who truly listened and saw you as a person made me happy. It’s heartbreaking to hear about your struggles with the medical community, but it’s inspiring to see how finding the right ally can make such a difference. Your candidness about masking and the challenges of being neurodivergent in a world that often misunderstands is very relatable. Thank you for sharing your experience. It’s a great reminder of the importance of empathy and genuine care in healthcare.
Thank you for your thoughtful comments !!! I’m very grateful to the doctor I write about in the piece and really passionate about trying to help the medical community understand how to treat autistic people better !
This really resonates! I have adenomyosis so periods have been as painful as childbirth. I've never been believed how much pain there is as I just go very quiet. I did this when I had pancreatitis too which is known to be one of the most painful things, no doctor believed it could be that as I just couldn't speak.
I've only recently been diagnosed with adenomyosis and was offered a hysterectomy, but I'm now menopausal and the pain is reducing now I'm not having to go periods so it seems a bit late to bother!
So pleased you have found a decent doctor who actually understands and doesn't need you to perform to be believed! Doctors really need training in how differently neurodivergent people may present their pain.
So glad it resonated with you (but sad you also have to go through this)! I feel so lucky that I finally found a doctor that believes me. Similarly to you, when I'm in really severe pain I go totally quiet because talking (or screaming even) when take effort for me that I just don't have in those moments. When I had my diagnostic surgery last year, they told me I had adenomyosis as well- it really is so brutal. I've never been through childbirth, so I don't know really how severe my pain is compared to that experience, but it is really hard to imagine that pain gets much worse than my severe flare-ups. I think most doctors really just have no idea (and don't make much of an effort to understand) what it is like to live with that kind of pain on a very regular basis. Luckily, after I was officially diagnosed through surgery, I got on a hormonal treatment plan (which definitely has its downsides) but I don't experience the severe pain as often now! Glad to hear your pain is at least improving through menopause.
I've had 2 children without pain relief (water births) and for most of the labour the pain is comparable. The last bit of giving birth did surpass it but in a different way. Adenomyosis made labour easier to cope with, and with labour pains it completely stops between contractions and is a pain with an amazing purpose which also makes a massive difference. Most doctors have absolutely no idea. One doctor told me I needed an anatomy lesson if I thought that was similar to labour pains (in my back) but it absolutely was the same.
This is such a good point! With my pain flare-ups, it’s hard for me to just feel like I’m losing time out of my life because there’s no “point” to them.
It’s so inexcusable that you were left to figure out a treatment plan on your own. Honestly, doctors should hire people like us as treatment and diagnosis specialists at this point! I’m glad you finally got a diagnosis, but I hate that you got the “just have a baby” response. I’ve left many a gynecologist’s office crying after being told that kind of crap. I do feel really lucky to have found a good doctor (I also really like my gynecologist) and to be living in a country (Germany) where medical care is relatively accessible. Honestly, any time my husband and I talk about if we’d ever move out of Berlin, we come back to the medical stuff. I just don’t know if I have it in me to wade through a sea of doctors that mostly don’t care to find one that maybe does again
I'm glad you found someone who listens. It took me 3 years to get a fibroids diagnosis and when I did they said there was nothing that they could do and maybe if I had a baby, it'd get better 🙃. Through my own time, energy, and research I've been able to get my period down to under 10 days but I really hate how they just leave us to fend for ourselves.
Your story is so moving. Reading about how you found support in a doctor who truly listened and saw you as a person made me happy. It’s heartbreaking to hear about your struggles with the medical community, but it’s inspiring to see how finding the right ally can make such a difference. Your candidness about masking and the challenges of being neurodivergent in a world that often misunderstands is very relatable. Thank you for sharing your experience. It’s a great reminder of the importance of empathy and genuine care in healthcare.
Thank you for your thoughtful comments !!! I’m very grateful to the doctor I write about in the piece and really passionate about trying to help the medical community understand how to treat autistic people better !
This really resonates! I have adenomyosis so periods have been as painful as childbirth. I've never been believed how much pain there is as I just go very quiet. I did this when I had pancreatitis too which is known to be one of the most painful things, no doctor believed it could be that as I just couldn't speak.
I've only recently been diagnosed with adenomyosis and was offered a hysterectomy, but I'm now menopausal and the pain is reducing now I'm not having to go periods so it seems a bit late to bother!
So pleased you have found a decent doctor who actually understands and doesn't need you to perform to be believed! Doctors really need training in how differently neurodivergent people may present their pain.
So glad it resonated with you (but sad you also have to go through this)! I feel so lucky that I finally found a doctor that believes me. Similarly to you, when I'm in really severe pain I go totally quiet because talking (or screaming even) when take effort for me that I just don't have in those moments. When I had my diagnostic surgery last year, they told me I had adenomyosis as well- it really is so brutal. I've never been through childbirth, so I don't know really how severe my pain is compared to that experience, but it is really hard to imagine that pain gets much worse than my severe flare-ups. I think most doctors really just have no idea (and don't make much of an effort to understand) what it is like to live with that kind of pain on a very regular basis. Luckily, after I was officially diagnosed through surgery, I got on a hormonal treatment plan (which definitely has its downsides) but I don't experience the severe pain as often now! Glad to hear your pain is at least improving through menopause.
I've had 2 children without pain relief (water births) and for most of the labour the pain is comparable. The last bit of giving birth did surpass it but in a different way. Adenomyosis made labour easier to cope with, and with labour pains it completely stops between contractions and is a pain with an amazing purpose which also makes a massive difference. Most doctors have absolutely no idea. One doctor told me I needed an anatomy lesson if I thought that was similar to labour pains (in my back) but it absolutely was the same.
So pleased you have seen an improvement
This is such a good point! With my pain flare-ups, it’s hard for me to just feel like I’m losing time out of my life because there’s no “point” to them.