Thank you for sharing this! My pain started at 13, and I spent my 30s searching for answers, being gaslit and told the bloating was normal, the weight gain was “just perimenopause,” and the back and pelvic pain were simply part of getting older.
I’m so glad you finally got answers. It took me almost 30 years to get a diagnosis. I was diagnosed last year at 42, and I’m now seven months post-op from two robotic excision surgeries. The second was a full hysterectomy due to how severe my endo and adeno was.
More education and more posts like this are so important so no one has to suffer in silence, I gaslit myself at a certain point and I am so grateful to finally have answers!
WOW. What a story. I had a similar situation. I wasn't diagnosed with endo until I was unable to conceive. When I began the IVF process, it was discovered that I had fibroids, which led to surgery, and at that point, the surgeon saw endometriosis also and removed it as well. .... Then IVF worked. I was 39 years old and had pain since I was 15 years old.
Thirty years. I hear you. The self-gaslighting was the hardest part for me too. I'd internalized the dismissal so completely that I stopped advocating for myself. Getting the diagnosis was as much about reclaiming my own trust as it was about the medical answer.
I'm glad you finally have answers, and I'm grateful you took the time to share your story. It matters.
Mine wasn't diagnosed until I was 47, had cysts and fibroids and had to have a hysterectomy, durong which they found a tumor the size of a baby's head.... benign, thankfully.... that was 13 years ago. I am STILL dealing with menopause, which, no matter what ads or youtube channels you see, NO ONE understands.
Exactly!!! She was also the first doctor to notice my.lelvis was tilted, there appeared to be many early stage pregnancies that failed.to progress..... seriously, the medical community doesn't k ow anywhere near enough about these issues!
I was just with a friend who had to advocate for a long time to have her endometriosis identified and receive a hysterectomy. Women's health is grossly underserved and so many of us suffer too long. Thanks for sharing your story and how to advocate.
This is such a great guide, thank you for sharing. I think so many women (especially young women going through this) need to know that this level of pain is not normal. I had endometriosis and such painful periods I would live on ibuprofen. I had no clue endometriosis even existed until after my husband and I were married and a friend had it. We spent 4 years trying to get pregnant, going through insemination rounds (and a ruptured cyst from the fertility meds), and I finally ended up going to a specialist. The ONLY reason I ended up there is because at our company holiday party my sister introduced me to the wife of a manager who had had fertility issues. She was just going to give me moral support, but ended up telling me to see her doctor. He happened to be one of the top endometriosis doctors in the country. There was no indication of if based on ultrasound and exam, so he offered laparoscopy. I said yes because I didn't know what else to do. After surgery he confirmed that's what it was - it had adhered to my bowels and my fallopian tube that we discovered after all those rounds of insemination was my super dominant ovary. 2 cycles later I was pregnant. It is so unfortunate that it takes this long for so many women to suffer undiagnosed.
Your story really resonates. So many of us find answers through luck, through a friend of a friend, through stumbling onto the right person at the right time. It shouldn't work that way.
I'm glad you found your specialist and got your diagnosis (and pregnant two cycles later!).
Thank you for sharing this. Stories like yours are how other women learn to stop accepting "just bad cramps" as an answer.
Thank you for sharing this! My pain started at 13, and I spent my 30s searching for answers, being gaslit and told the bloating was normal, the weight gain was “just perimenopause,” and the back and pelvic pain were simply part of getting older.
I’m so glad you finally got answers. It took me almost 30 years to get a diagnosis. I was diagnosed last year at 42, and I’m now seven months post-op from two robotic excision surgeries. The second was a full hysterectomy due to how severe my endo and adeno was.
More education and more posts like this are so important so no one has to suffer in silence, I gaslit myself at a certain point and I am so grateful to finally have answers!
WOW. What a story. I had a similar situation. I wasn't diagnosed with endo until I was unable to conceive. When I began the IVF process, it was discovered that I had fibroids, which led to surgery, and at that point, the surgeon saw endometriosis also and removed it as well. .... Then IVF worked. I was 39 years old and had pain since I was 15 years old.
— Amy Cuevas Schroeder
Oh goodness, I am SO sorry! I am so glad they found it and removed it! I truly hope you are feeling relief
Aww, thanks!
Thirty years. I hear you. The self-gaslighting was the hardest part for me too. I'd internalized the dismissal so completely that I stopped advocating for myself. Getting the diagnosis was as much about reclaiming my own trust as it was about the medical answer.
I'm glad you finally have answers, and I'm grateful you took the time to share your story. It matters.
Mine wasn't diagnosed until I was 47, had cysts and fibroids and had to have a hysterectomy, durong which they found a tumor the size of a baby's head.... benign, thankfully.... that was 13 years ago. I am STILL dealing with menopause, which, no matter what ads or youtube channels you see, NO ONE understands.
A tumor the size of a baby's head. And no one caught it until the hysterectomy. That's horrifying and infuriating.
Your story is part of why these conversations matter.
Exactly!!! She was also the first doctor to notice my.lelvis was tilted, there appeared to be many early stage pregnancies that failed.to progress..... seriously, the medical community doesn't k ow anywhere near enough about these issues!
I was just with a friend who had to advocate for a long time to have her endometriosis identified and receive a hysterectomy. Women's health is grossly underserved and so many of us suffer too long. Thanks for sharing your story and how to advocate.
This is such a great guide, thank you for sharing. I think so many women (especially young women going through this) need to know that this level of pain is not normal. I had endometriosis and such painful periods I would live on ibuprofen. I had no clue endometriosis even existed until after my husband and I were married and a friend had it. We spent 4 years trying to get pregnant, going through insemination rounds (and a ruptured cyst from the fertility meds), and I finally ended up going to a specialist. The ONLY reason I ended up there is because at our company holiday party my sister introduced me to the wife of a manager who had had fertility issues. She was just going to give me moral support, but ended up telling me to see her doctor. He happened to be one of the top endometriosis doctors in the country. There was no indication of if based on ultrasound and exam, so he offered laparoscopy. I said yes because I didn't know what else to do. After surgery he confirmed that's what it was - it had adhered to my bowels and my fallopian tube that we discovered after all those rounds of insemination was my super dominant ovary. 2 cycles later I was pregnant. It is so unfortunate that it takes this long for so many women to suffer undiagnosed.
Wow, Laura, thanks for sharing your story.
Your story really resonates. So many of us find answers through luck, through a friend of a friend, through stumbling onto the right person at the right time. It shouldn't work that way.
I'm glad you found your specialist and got your diagnosis (and pregnant two cycles later!).
Thank you for sharing this. Stories like yours are how other women learn to stop accepting "just bad cramps" as an answer.
So important! As a member of GenX I know that so many of us never got the treatment we needed. I hope we can all find relief ASAP.