I love this, Nicci. Not what you've been through, but in what you share. I love the detail. It's valuable. You make such a necessary point when you ask why we think we need to be in serious medical pain before taking action about things like this. I had a hysterectomy in 2020 and it's one of the best decisions I've ever made. I do not miss my uterus at all, and more importantly, I do not miss the clotting and cramps and vaginal soreness. Much like how you write your experience here, I do the same regarding my hysterectomy in my memoir. It's just another striking similarity I find between you and me.
I shall do that! Right now I'm in New Jersey. My husband and I are slated to speak at a marriage conference tomorrow and then we'll be home late Sunday. So it'll take me into next week to dive back into sharing on Substack!
I'm so sorry you had to go through this, Nicci, and am so glad you're okay. From period #2, I had Day One cramps so bad that only Vicodin took them out. Pain so bad I couldn't stand up straight and felt like I'd pass out (or wished I did). Then my opiate allergy caught up with Vic and Darvocet (the only other thing that worked, and the only opiate that didn't make me barf) was taken off the market. The pain got better in my mid-late 30s (and Midol actually came in for the save...who knew? Allergic to aspirin, which is also ibuprofen, so...limited in my options!). Then, in my mid-late 40s Peri stopped by, with the missing period, the every-other-week period, the period-that-lasted-for-two-weeks, periods that mimicked the elevator scene in The Shining, then no periods, then they're back and the mystery cycle repeated (never ever missing The Shining episode, though). And this is "normal"! Why? BECAUSE WHO GIVES A FLYING FUCK ABOUT WOMEN????!!!!! We're just supposed to receive penises, have babies, shut up and die. (Sorry, did I write that out loud?) If a man had ONE CRAMP, science would be all over that shit. If a man had ONE HOT FLASH, the government would pay for spa retreats, and science would be all over that shit. I'm so sorry you suffered and had to endure, mostly in silence, and couldn't get the help you needed when you needed it, instead of an ER visit (because those are inexpensive and not at all stressful). I deeply appreciate you shouting it from the rooftops now. Thanks, Nicci. And Canada doesn't make any sense. 😘 xo
Thanks so much for sharing your story. 💖💖💖 so sorry. I’ve heard from at least 3 people today that said “hysterectomy FTW”. My doctor already said he’d be happy to rid me of mine if I so desired. Hopefully it doesn’t become necessary but it’s good to know it’s an option.
It certainly is an option I know a few have taken. But I like to keep all my junk, y'know? Because they (doctors, men, men who are doctors) see is as an expendable part, but is it? We know they don't really know anything other than we *can* live without it. What I'm considering (and will have the chat with my doctor in January), is what's the point of keeping ovaries after they're done and all they can do is maybe grow cancer? I don't have the BRCA gene, but it still crosses my mind. Should we get them amputated? I also know that they will leave the ovaries in and just take the uterus in some hysters. I would panic, because they aren't anchored down and just wander about and...what if cancer? WTF then? Again, it's men coming up with this crap. And women don't talk about it because we're too stoic and polite! So our info is limited to anecdotal evidence (which I deem valid but also limited). It's so much fun being a gal! I'll be thinking pain-free, spotless-white-sheet thoughts for you, Nicci. I hope the worst of it is done and you can just go forth being you! xo
I don’t know the comment word limit, but I may test it. My story is exactly the same only completely different.
I was in pain. But the pain was self-inflicted, which is to say that it likely came about from me being on testosterone. It’s possible that it would have happened anyway, that my suffering was a product of perimenopause (which I am here to declare loudly and openly that men suffer from). Regardless, my options were slim, and a hysterectomy was the best light at the end of that tunnel (take that joke however you need to).
Within the transmasculine community there is some (limited) discussion about hystos. It’s mostly about gender affirmation and sometimes about pain and problems, but the conversations are always quiet and reserved, hidden from sight, intensely private. Because as hard as it is for women to talk about these issues, it is so much harder for transmen to face them in a world that is always looking to invalidate us. My pain, no matter how intense and debilitating, was better faced by my silence than it ever could have been by voicing it aloud. I wrote about it, in fact, by NOT writing about it. I told no one. I did not even tell my parents. When you are transgender and you say you need surgery, you get the same response every single time. “Oh, so are you getting THE surgery?” And I could not face that.
No, I chose not to face that.
Yes, it resolved my pain. Yes, it was affirming of my gender. But also? I grieved. My two amazing children started their lives in that part of my body. I was facing significant issues with recovery, with hormonal changes, with emotional impacts I am still working through, and I had no one to tell who could provide me the support I needed. I still need it and cannot find it anywhere.
Except here.
So… Thank you, Nicci. This door was closed to me, and you cracked it open. I’m peeking through.
Robin, I am just nodding my head with everything you say. My heart feels for you and I am so glad you feel comfortable enough to share this with our little community. Hugs and all the love. 💗
I have nothing particular to offer; just want to say I am happy that you have found this place where you can talk about what you want to without attacks on your dignity.
Thank you for sharing! I could share some info on the subject, but will only say (because I didn’t know) that after menopause, after all the BS of pain, headaches, sweating profusely, drying up (you know...if you know). Well, the drying up also pertains to you ovaries, they dry up and poof, depending on when you have the pleasure of a vaginal ultrasound some young tech might tell you your left ovary is gone and the right looks like a shriveled up raisin. And you might cry and feel like you are in mourning. No one ever told me that and given I don’t have MD after my name, failed high school biology how was I to know that’s what happens. Hope you are recovering and getting energy back! Be very grateful you did not have to do blood transfusion.
Thanks for sharing that! The original concept for this story was that I could write a book with all the things no one ever tells us... I didn’t get it thru this time but maybe next time!
I'm so sorry you went through this, and I'm glad they took care of it! I got the arm implant as an attempt at hormonal birth control after the pill caused me so much trouble. I bled for two weeks on and two weeks off. After two months of this and feeling like I was dying, I called my doctor and said they had to take the arm implant out. They told me they like to wait at least three months for things to "settle out." I told them I didn't care; that I felt like I was dying and they were to fix it, immediately. Irritatingly, they said they were booked up for the next month, so I did end up experiencing three full months of bleeding two weeks on, two weeks off, as they wanted me to. >:(
I just had a hysterectomy last year because I had endometrial cancer. I also had to get radiation treatments (but no chemo, fortunately). I had been having a bit of spotty bleeding off and on for a long time, even though I am definitely past the menopause Rubicon. I knew I should go to the doc, but I avoid it as much as possible. Between being fat, enby, autistic and having some chronic illness that some doctors admit is real but can't really diagnose, any trip to a doctor is very likely to leave me worse off than I was before I went, so I avoid at all cost. Eventually, though, the bleeding got worse, and then one night I passed this clot that was about 3/4 the size of a golf ball, and then I immediately felt very faint and nauseous. My wife took me to the emergency room. They took xrays, then the doc came in and told me there was nothing wrong and it was probably just gas, which he said on his wait out the door. So I asked the nurse if the doc was aware that I was bleeding (which I had gone out of the way to tell them when I came in). He said that if the doc thought it was important, he would have mentioned it. So later, I blamed myself for not being more assertive and insisting that the nurse verify that the doctor was aware of the blood. Anyway, the bleeding didn't stop, so after a few months, I finally found a gyn I felt comfortable with, and they did ultrasound, then DNC, then confirmed cancer. I had a full hysterectomy including ovaries, cervix - all of it. The post surgery biopsy showed that the cancer had eaten almost all the way through to the outer wall of my uterus, so the did the radiation as a caution against stray cancer cells metastasizing. That's usually not necessary with this type of cancer, but mine was worse than most because I went so long without a diagnosis/treatment. I also had to get a transfusion because of low blood counts. But now I have no uterus and I do not miss it, either.
My goodness. I am so glad the cancer was caught when it was, and so sorry you have so much stress around doctors. I can totally understand why. Well, now we know - this is a place you can come when you want to chat about any of this insanity. Hugs!!
Wow Nicci. I’m assuming you were going through this on our Zoom last week! You’re a very strong woman. I’m glad it’s been sorted for you but awful you had to get to that point. I’ve had problems with my periods most of my life. But nothing to this degree. Acupuncture has helped me loads but the pain on the first day of each one is still excruciating. As I’m now 51 I’m hoping they might bugger off for good soon. Sadly no sign of it yet though as still coming on time every month.
Thanks, Amanda. I think I was 6 days out and feeling pretty good when we talked. But it’s creeping back and I am just so tired. Thanks for reading and for sharing your story. Bugger off, indeed.
Thank you for sharing such a difficult time. I can relate regarding the "needing to be on death's door" in order to get attention. Always expected to just keep swimming ... no matter what because everyone else depends on me. I appreciate you putting your uterus on. display. Most people would not. I'm 58 and have not had my period in 7 years but have had a whole crap-load of other things related to menopause piled on top of the usual female stuff. The more it is talked about, the more easier the conversations should be. One thing I have learned is that if you do not feel heard or taken care of by a healthcare professional, go with that feeling and see someone else. I always enjoy your storytelling and this one did not disappoint in the least.
Thanks so much, Faydeen. I haven’t updated things but I finally decided on a hysterectomy, which will be happening this week. I’m sorry you are dealing with this crap as well but I agree the more we talk about it the more we can normalize talking about it and not feeling so damn alone all the time!
I love this, Nicci. Not what you've been through, but in what you share. I love the detail. It's valuable. You make such a necessary point when you ask why we think we need to be in serious medical pain before taking action about things like this. I had a hysterectomy in 2020 and it's one of the best decisions I've ever made. I do not miss my uterus at all, and more importantly, I do not miss the clotting and cramps and vaginal soreness. Much like how you write your experience here, I do the same regarding my hysterectomy in my memoir. It's just another striking similarity I find between you and me.
Knew you’d love this one. Thank you for replying and for reading! Share with other uterus-havers you know!
I shall do that! Right now I'm in New Jersey. My husband and I are slated to speak at a marriage conference tomorrow and then we'll be home late Sunday. So it'll take me into next week to dive back into sharing on Substack!
Love love. Have fun!!
I'm so sorry you had to go through this, Nicci, and am so glad you're okay. From period #2, I had Day One cramps so bad that only Vicodin took them out. Pain so bad I couldn't stand up straight and felt like I'd pass out (or wished I did). Then my opiate allergy caught up with Vic and Darvocet (the only other thing that worked, and the only opiate that didn't make me barf) was taken off the market. The pain got better in my mid-late 30s (and Midol actually came in for the save...who knew? Allergic to aspirin, which is also ibuprofen, so...limited in my options!). Then, in my mid-late 40s Peri stopped by, with the missing period, the every-other-week period, the period-that-lasted-for-two-weeks, periods that mimicked the elevator scene in The Shining, then no periods, then they're back and the mystery cycle repeated (never ever missing The Shining episode, though). And this is "normal"! Why? BECAUSE WHO GIVES A FLYING FUCK ABOUT WOMEN????!!!!! We're just supposed to receive penises, have babies, shut up and die. (Sorry, did I write that out loud?) If a man had ONE CRAMP, science would be all over that shit. If a man had ONE HOT FLASH, the government would pay for spa retreats, and science would be all over that shit. I'm so sorry you suffered and had to endure, mostly in silence, and couldn't get the help you needed when you needed it, instead of an ER visit (because those are inexpensive and not at all stressful). I deeply appreciate you shouting it from the rooftops now. Thanks, Nicci. And Canada doesn't make any sense. 😘 xo
Thanks so much for sharing your story. 💖💖💖 so sorry. I’ve heard from at least 3 people today that said “hysterectomy FTW”. My doctor already said he’d be happy to rid me of mine if I so desired. Hopefully it doesn’t become necessary but it’s good to know it’s an option.
It certainly is an option I know a few have taken. But I like to keep all my junk, y'know? Because they (doctors, men, men who are doctors) see is as an expendable part, but is it? We know they don't really know anything other than we *can* live without it. What I'm considering (and will have the chat with my doctor in January), is what's the point of keeping ovaries after they're done and all they can do is maybe grow cancer? I don't have the BRCA gene, but it still crosses my mind. Should we get them amputated? I also know that they will leave the ovaries in and just take the uterus in some hysters. I would panic, because they aren't anchored down and just wander about and...what if cancer? WTF then? Again, it's men coming up with this crap. And women don't talk about it because we're too stoic and polite! So our info is limited to anecdotal evidence (which I deem valid but also limited). It's so much fun being a gal! I'll be thinking pain-free, spotless-white-sheet thoughts for you, Nicci. I hope the worst of it is done and you can just go forth being you! xo
Thanks so much
AMEN to this! I just had a Hysteroscopy Thursday for a broken IUD. Thank you for your loud uterus :)
OW OW OW. I hope you’re doing ok!
I don’t know the comment word limit, but I may test it. My story is exactly the same only completely different.
I was in pain. But the pain was self-inflicted, which is to say that it likely came about from me being on testosterone. It’s possible that it would have happened anyway, that my suffering was a product of perimenopause (which I am here to declare loudly and openly that men suffer from). Regardless, my options were slim, and a hysterectomy was the best light at the end of that tunnel (take that joke however you need to).
Within the transmasculine community there is some (limited) discussion about hystos. It’s mostly about gender affirmation and sometimes about pain and problems, but the conversations are always quiet and reserved, hidden from sight, intensely private. Because as hard as it is for women to talk about these issues, it is so much harder for transmen to face them in a world that is always looking to invalidate us. My pain, no matter how intense and debilitating, was better faced by my silence than it ever could have been by voicing it aloud. I wrote about it, in fact, by NOT writing about it. I told no one. I did not even tell my parents. When you are transgender and you say you need surgery, you get the same response every single time. “Oh, so are you getting THE surgery?” And I could not face that.
No, I chose not to face that.
Yes, it resolved my pain. Yes, it was affirming of my gender. But also? I grieved. My two amazing children started their lives in that part of my body. I was facing significant issues with recovery, with hormonal changes, with emotional impacts I am still working through, and I had no one to tell who could provide me the support I needed. I still need it and cannot find it anywhere.
Except here.
So… Thank you, Nicci. This door was closed to me, and you cracked it open. I’m peeking through.
Robin, I am just nodding my head with everything you say. My heart feels for you and I am so glad you feel comfortable enough to share this with our little community. Hugs and all the love. 💗
I have nothing particular to offer; just want to say I am happy that you have found this place where you can talk about what you want to without attacks on your dignity.
Thanks, I think those well wishes are plenty to offer. 💗
Thank you for sharing! I could share some info on the subject, but will only say (because I didn’t know) that after menopause, after all the BS of pain, headaches, sweating profusely, drying up (you know...if you know). Well, the drying up also pertains to you ovaries, they dry up and poof, depending on when you have the pleasure of a vaginal ultrasound some young tech might tell you your left ovary is gone and the right looks like a shriveled up raisin. And you might cry and feel like you are in mourning. No one ever told me that and given I don’t have MD after my name, failed high school biology how was I to know that’s what happens. Hope you are recovering and getting energy back! Be very grateful you did not have to do blood transfusion.
Thanks for sharing that! The original concept for this story was that I could write a book with all the things no one ever tells us... I didn’t get it thru this time but maybe next time!
I'm so sorry you went through this, and I'm glad they took care of it! I got the arm implant as an attempt at hormonal birth control after the pill caused me so much trouble. I bled for two weeks on and two weeks off. After two months of this and feeling like I was dying, I called my doctor and said they had to take the arm implant out. They told me they like to wait at least three months for things to "settle out." I told them I didn't care; that I felt like I was dying and they were to fix it, immediately. Irritatingly, they said they were booked up for the next month, so I did end up experiencing three full months of bleeding two weeks on, two weeks off, as they wanted me to. >:(
My goodness. The things we are expected to simply endure.
I just had a hysterectomy last year because I had endometrial cancer. I also had to get radiation treatments (but no chemo, fortunately). I had been having a bit of spotty bleeding off and on for a long time, even though I am definitely past the menopause Rubicon. I knew I should go to the doc, but I avoid it as much as possible. Between being fat, enby, autistic and having some chronic illness that some doctors admit is real but can't really diagnose, any trip to a doctor is very likely to leave me worse off than I was before I went, so I avoid at all cost. Eventually, though, the bleeding got worse, and then one night I passed this clot that was about 3/4 the size of a golf ball, and then I immediately felt very faint and nauseous. My wife took me to the emergency room. They took xrays, then the doc came in and told me there was nothing wrong and it was probably just gas, which he said on his wait out the door. So I asked the nurse if the doc was aware that I was bleeding (which I had gone out of the way to tell them when I came in). He said that if the doc thought it was important, he would have mentioned it. So later, I blamed myself for not being more assertive and insisting that the nurse verify that the doctor was aware of the blood. Anyway, the bleeding didn't stop, so after a few months, I finally found a gyn I felt comfortable with, and they did ultrasound, then DNC, then confirmed cancer. I had a full hysterectomy including ovaries, cervix - all of it. The post surgery biopsy showed that the cancer had eaten almost all the way through to the outer wall of my uterus, so the did the radiation as a caution against stray cancer cells metastasizing. That's usually not necessary with this type of cancer, but mine was worse than most because I went so long without a diagnosis/treatment. I also had to get a transfusion because of low blood counts. But now I have no uterus and I do not miss it, either.
My goodness. I am so glad the cancer was caught when it was, and so sorry you have so much stress around doctors. I can totally understand why. Well, now we know - this is a place you can come when you want to chat about any of this insanity. Hugs!!
Thank you so much for holding this space!
I am well, thank you :) Back at you!
hi Nicci, thanks for sharing this. Really insightful, and glad you are ok.
Thank you! I hope being ok continues!
I love the idea that we now can talk about what was unthinkable to even say out loud. Sharing with others is what life is all about. Well done
Thank you 💗
That was not fun!!!! Glad you are okay!
Thanks! Me too!!
Wow Nicci. I’m assuming you were going through this on our Zoom last week! You’re a very strong woman. I’m glad it’s been sorted for you but awful you had to get to that point. I’ve had problems with my periods most of my life. But nothing to this degree. Acupuncture has helped me loads but the pain on the first day of each one is still excruciating. As I’m now 51 I’m hoping they might bugger off for good soon. Sadly no sign of it yet though as still coming on time every month.
Thanks, Amanda. I think I was 6 days out and feeling pretty good when we talked. But it’s creeping back and I am just so tired. Thanks for reading and for sharing your story. Bugger off, indeed.
Wow, I had no idea!! Yes, I went through something similar for a long time, before I got my hysterectomy!! Sorry you had to go thru that!!
Thanks so much!! Hoping it’s over!!!
Thank you for sharing such a difficult time. I can relate regarding the "needing to be on death's door" in order to get attention. Always expected to just keep swimming ... no matter what because everyone else depends on me. I appreciate you putting your uterus on. display. Most people would not. I'm 58 and have not had my period in 7 years but have had a whole crap-load of other things related to menopause piled on top of the usual female stuff. The more it is talked about, the more easier the conversations should be. One thing I have learned is that if you do not feel heard or taken care of by a healthcare professional, go with that feeling and see someone else. I always enjoy your storytelling and this one did not disappoint in the least.
Thanks so much, Faydeen. I haven’t updated things but I finally decided on a hysterectomy, which will be happening this week. I’m sorry you are dealing with this crap as well but I agree the more we talk about it the more we can normalize talking about it and not feeling so damn alone all the time!
My wish for you is a very successful removal of that uterus and a very quick and solid recovery!!!
Thank you very much!