Thank you. I am a queer woman diagnosed with fibroids at 37 when my spouse and I went to a fertility clinic to try to get me pregnant. I'll leave out the rest of demographic info for an attempt at semi-privacy given the details here.
1. I went to five gynecologists in a two-year period (2 fertility specialists, 2 regular gynecologists, 1 gynecological surgeon). The only one whose treatments and choices didn't actively worsen the situation was the surgeon.
2. I'd been sick for much longer than I knew. The level of bleeding I'd experienced since I first began menstruating was never normal or safe. My anemia was becoming disabling by this point and it's probably a good thing I bothered going to the fertility specialist. Even though her prescriptions and choices made the whole thing worse.
3. The surgeon was willing to support my fertility choices, and therefore did a myomectomy to remove the fibroids. Turned out, however, there were a lot of them. She removed thirty, the largest being cantaloupe-sized. Recovery was very difficult.
4. Unfortunately by the time I went for another fertility check-in (with a different doctor since the first was so damaging), there was a new large and rapidly growing fibroid. Childbirth was out of the question and the new fibroid was placed in a way that caused new, exciting, and different disabling symptoms. I went back to the surgeon, who prescribed Lupron to shrink it so she could do minimally invasive hysterectomy.
5. Lupron medical menopause is the worst. The mood swings and the body changes and the hot flashes!
6. I felt so much healthier after the hysterectomy. Not being anemic, priceless.
7. Years later, I am now undergoing what I believe to be early menopause (hard to tell, since I don't menstruate, but I have a number of other symptoms), likely triggered by ovarian damage from the two surgeries. The surgeon had to cut around scar tissue from surgery #1 to save the ovaries in surgery #2.
8. I might have found out about all of this earlier except that I hadn't been to gynecologists for several years... because I had severe pain with every pap smear... because there was a fibroid sitting on my cervix, and my previous gyns did not notice this. I thought I was a wimp who couldn't handle normal tests. None of my gyns acknowledged the pain or gave me ways to deal with it.
9. I do not, and will not, have children. A lot of the journey involved accepting infertility.
Thanks for creating and sharing this piece. I am a woman who struggled with a variety of symptoms that impacted my life on a daily basis for years and years, and was told by every single doctor I saw that it was absolutely simply “anxiety”. It wasn’t until my gastrointestinal symptoms because so extreme that I saw a new GI doctor who finally recommended a colonoscopy at age 29 that it was discovered that no, I didn’t simply have anxiety — what I actually had was a tumor so deadly it is referred to in the literature as the “ticking time bomb tumor” because it will, if undiscovered, eventually just give you a stroke one day and kill you. Two days after I turned 30, I had the tumor removed. It was a harrowing surgery and recovery (full abdominal incision from belly button to sternum), but all my symptoms dissipated pretty much immediately.
The best thing I ever did for my body was to finally after years of excessive bleeding, like on my car seat, in the grocery store, on a cruise, get a hysterectomy at age 50. My uterus was so big I looked five months pregnant. I had six fibroids. I tried every prescription and over the counter med. I tried acupuncture, I tried it all. I was terrified of the surgery. But it changed my life 100%. I was done having kids (obviously), but I wish I'd done it five years earlier.
Thank you for this important work! Before menopause, my secret health issue was endometriosis, which can play out in similar ways. Sending love to my sisters in suffering. This line stopped me in my tracks: “They said basically it's too small to worry about but we'll keep checking on it yearly and there's nothing I can do about the pain.” That sounds like BS; I hope everyone still dealing with pain gets the relief they need.
I want to boost awareness of another condition that is in a similar category: endometriosis. Last I saw the estimate was 30% of people with uteruses have it. My spouse is one. I will spare you the ten page story and cut to the point: very similar potential impact (debilitating for her), similar mistreatment from medical establishment, etc. Literally ten years of specialists and no one diagnosed it (it’s hardly mentioned in med school). Just the usual condescension and red herrings. STILL makes me furious…
Thanks so much for sharing my story! I hope that the silence about these issues that was a given for my mother’s generation will be a thing of the past.
Thank you, thank you for this! I'm all in favor of more discussions about this and wish this information had been readily available 30 years ago when I first got my period. I had horrific periods in high school and college that were attributed to "how things are". Things thankfully leveled out after that. I was finally diagnosed with fibroids/endometriosis when I was 35 after I had an ultrasound for kidney stones. I don't have severe pain but I do have other symptoms and none of my other doctors ever questioned it.
For further reading, I highly recommend Bleed: Destroying Myths and Misogyny in Endometriosis Care by Tracey Lindeman. It's incredibly illuminating about treatment options and how to best navigate the reproductive healthcare system.
I had both an ovarian cyst (due to Mirena IUD) and very large fibroid when I had my hysterectomy. I had no symptom for the cyst other than lower back pain, and no symptoms for the fibroid other than lower abdominal bloating. Both were discovered during a CAT scan for something else. I was referred in gynaecology for treatment. I was first seen by the resident who it turns out, had not read my chart. During his physical exam, I yelped and complained he was hurting me, responded: “You’re fine, it doesn’t hurt.” He then proceeded to say there was nothing wrong with me. I asked: “What about the CAT scan results?”Oops. So I asked to see his boss, a female gynaecologist, who is lovely and kind. Ince removed, my cyst was orange-sized, and my uterus about 3-months gestational size. And this dude had felt nothing on exam, and denied my pain... He operated with the nice lady - to this day I hope I complained about him out loud while being under LOL.
This really hit home for me as I’m lying on the couch this morning recovering from a DaVinci myomectomy (that’s the robot kind!). My fibroids were discovered during an ultrasound preparatory to starting fertility treatment. I had no severe pain, heavy periods, or anything else, though I think I’m going to find that some random cramps or aches that I always dismissed are gone once I’m recovered. My biggest advice to anyone who is diagnosed with fibroids is to remember that you’re your own best advocate. Tests are not always accurate! I had two transvaginal ultrasounds, one with fluid to make everything more visible, and an MRI, and all of them indicated something different to what the surgeon actually found in my uterus.
I’m really grateful for everyone here who’s talked about fibroid recurrence. My head has been in the immediate fertility journey and not in the long term! That’s definitely something I need to ask more questions about.
This is so important, and all my love to these people. I had problems after my daughter was born and ended up several years later having an ovarian cyst the size of a tennis ball (not fruit!) and other endometrial tissue all over. First had that ovary removed and symptoms were better for a couple of years, then had a full hysterectomy and felt better while I was still in the hospital. The doctor told me I must have a very high pain tolerance and i definitely want that on my tombstone.
I didn't have fibroids, but what I later learned were very heavy periods, requiring large amounts of ibuprofen to manage the pain so I could function. I was anemic my whole life till menopause, and not a single doctor, including my gynecologists, ever thought to ask about why, or about periods beyond "are they regular?" So no treatment. It's depressing to read that nothing has really changed.
Thank you so much for this, and thank you to all those who shared their stories in the article and in the comments. I was diagnosed with fibroids at age 45 a little over two years ago, after a year or so of increasingly heavy periods. I have four, and they are thankfully not painful. My doctor discussed all the options and I decided to try birth control, which cut the bleeding to almost none for almost two years.
Meanwhile, a few months after my diagnosis, my mother was diagnosed with a very rare, aggressive, metastatic uterine cancer that killed her in six months. So at my annual visit to my gynecologist last year, a month after my mom died, we discussed a hysterectomy. She said I was certainly a candidate based on the increasing size of my fibroids and my (new) family history, and left the decision to me to think about. I wasn't ready to schedule it yet, and then we had several additional emergency situations in my family that made it not a good time.
But this year I've been bleeding more again, and my doctor said the fibroids have continued to grow, and so I have just this week scheduled the surgery for August. I did have an endometrial biopsy last week, and it was normal. At 47, I've had my kids. Reading all these stories has reinforced my decision -- and has also made me very thankful I found a good gynecologist who listened, thoroughly checked me out, explained all the options, and let me decide. I hope I have as good an outcome as all of you who reported being so glad you had the hysterectomy.
Without changing the subject too much, I also want to say a few things based on my mom's experience, for anyone who might need to hear them:
1. ANY post-menopausal bleeding is abnormal. Get it checked out right away, and if your uterus is enlarged, make sure you find out why. Evidently my mom's uterus was enlarged about 9 months before her diagnosis, but the gyn was moving away or something and didn't follow up or tell her to see someone else. The cancer spread and was only discovered after she got a fast-growing tumor on her collarbone.
2. If you are diagnosed with any cancer, but especially a rare one, get yourself as fast as you can to the best cancer center you can for a second opinion. Make sure the pathologists are as sure as they can be about exactly what kind of cancer you have, so the oncologists can identify the best way to treat it. Ask your doctor how many patients they have treated with this kind of cancer, and if it's not many, find a doctor who has seen more of it. Ask them to be honest with you about your chances for survival, or for how long you might be able to live the kind of life you want to live. And if the answers are not optimistic, then be honest with yourself and your family about what kind of treatments you want and, if they don't work, how you want to spend your final days.
I'm 3 days past the 1 year anniversary of my myomectomy and I teared up reading these stories. The gaslighting I had during my journey was unbelievable and my experience has led me to literally have PTSD during my period. That being said, I'm thankful for all I learned about my body, my health, and our f'ed up healthcare system.
For anyone questioning - there are options. It does get better. You are worth it. ❤️
I cried reading this because I have been dealing with large and medium sized fibroids for YEARS and I can't get any doctors to do anything about it or help me. In my area a lot of doctors have left the practice and it's hard to even get a provider... As in in my area you can't even get a primary care provider unless it's a non MD like a nurse practitioner. I respect them but sometimes you need a doctor! I'm so frustrated and gaslit and I'm a privileged person with insurance..I can't get care!!
Wow ok, I am taking notes from this article to talk about fibroids with my gyno at my next appointment. I'm in my mid-20s and have a low dose hormonal IUD, and I don't really bleed at all with this type of birth control. But before it I had the copper IUD, which made my already bad periods even worse. I consider myself relatively educated on sexual health but I've never even considered that I might have fibroids. My grandmother had really bad periods for most of her life, then got a hysterectomy sometime around middle age but never shared why - and now I wonder if she had fibroids. It's crazy that these are so common and yet we rarely ever hear about it, so thank you for sharing these stories.
I never really thought about fibroids because my period problems were not of the long, heavy, and painful kind - though every so often I'd have a bout of heavier periods - they just dragged on forever in this light and gunky way - like two weeks, sometimes, where it just would never quite stop. There are so many weird symptoms! But then I found out I had one small fibroid, which wasn't a big deal until a couple of years later when I started to have pain if my bladder was too full - for a couple months I thought I had a UTI but then realized it always happened at the start of my cycle. One ultrasound later and it turned out that sucker had ballooned to like 10 cm. When I got a hysterectomy in February, my uterus was five times the expected size. No fun.
Thank you. I am a queer woman diagnosed with fibroids at 37 when my spouse and I went to a fertility clinic to try to get me pregnant. I'll leave out the rest of demographic info for an attempt at semi-privacy given the details here.
1. I went to five gynecologists in a two-year period (2 fertility specialists, 2 regular gynecologists, 1 gynecological surgeon). The only one whose treatments and choices didn't actively worsen the situation was the surgeon.
2. I'd been sick for much longer than I knew. The level of bleeding I'd experienced since I first began menstruating was never normal or safe. My anemia was becoming disabling by this point and it's probably a good thing I bothered going to the fertility specialist. Even though her prescriptions and choices made the whole thing worse.
3. The surgeon was willing to support my fertility choices, and therefore did a myomectomy to remove the fibroids. Turned out, however, there were a lot of them. She removed thirty, the largest being cantaloupe-sized. Recovery was very difficult.
4. Unfortunately by the time I went for another fertility check-in (with a different doctor since the first was so damaging), there was a new large and rapidly growing fibroid. Childbirth was out of the question and the new fibroid was placed in a way that caused new, exciting, and different disabling symptoms. I went back to the surgeon, who prescribed Lupron to shrink it so she could do minimally invasive hysterectomy.
5. Lupron medical menopause is the worst. The mood swings and the body changes and the hot flashes!
6. I felt so much healthier after the hysterectomy. Not being anemic, priceless.
7. Years later, I am now undergoing what I believe to be early menopause (hard to tell, since I don't menstruate, but I have a number of other symptoms), likely triggered by ovarian damage from the two surgeries. The surgeon had to cut around scar tissue from surgery #1 to save the ovaries in surgery #2.
8. I might have found out about all of this earlier except that I hadn't been to gynecologists for several years... because I had severe pain with every pap smear... because there was a fibroid sitting on my cervix, and my previous gyns did not notice this. I thought I was a wimp who couldn't handle normal tests. None of my gyns acknowledged the pain or gave me ways to deal with it.
9. I do not, and will not, have children. A lot of the journey involved accepting infertility.
Thank you for collecting these stories, AHP.
Thanks for creating and sharing this piece. I am a woman who struggled with a variety of symptoms that impacted my life on a daily basis for years and years, and was told by every single doctor I saw that it was absolutely simply “anxiety”. It wasn’t until my gastrointestinal symptoms because so extreme that I saw a new GI doctor who finally recommended a colonoscopy at age 29 that it was discovered that no, I didn’t simply have anxiety — what I actually had was a tumor so deadly it is referred to in the literature as the “ticking time bomb tumor” because it will, if undiscovered, eventually just give you a stroke one day and kill you. Two days after I turned 30, I had the tumor removed. It was a harrowing surgery and recovery (full abdominal incision from belly button to sternum), but all my symptoms dissipated pretty much immediately.
The best thing I ever did for my body was to finally after years of excessive bleeding, like on my car seat, in the grocery store, on a cruise, get a hysterectomy at age 50. My uterus was so big I looked five months pregnant. I had six fibroids. I tried every prescription and over the counter med. I tried acupuncture, I tried it all. I was terrified of the surgery. But it changed my life 100%. I was done having kids (obviously), but I wish I'd done it five years earlier.
Thank you for this important work! Before menopause, my secret health issue was endometriosis, which can play out in similar ways. Sending love to my sisters in suffering. This line stopped me in my tracks: “They said basically it's too small to worry about but we'll keep checking on it yearly and there's nothing I can do about the pain.” That sounds like BS; I hope everyone still dealing with pain gets the relief they need.
I want to boost awareness of another condition that is in a similar category: endometriosis. Last I saw the estimate was 30% of people with uteruses have it. My spouse is one. I will spare you the ten page story and cut to the point: very similar potential impact (debilitating for her), similar mistreatment from medical establishment, etc. Literally ten years of specialists and no one diagnosed it (it’s hardly mentioned in med school). Just the usual condescension and red herrings. STILL makes me furious…
Thanks so much for sharing my story! I hope that the silence about these issues that was a given for my mother’s generation will be a thing of the past.
Thank you, thank you for this! I'm all in favor of more discussions about this and wish this information had been readily available 30 years ago when I first got my period. I had horrific periods in high school and college that were attributed to "how things are". Things thankfully leveled out after that. I was finally diagnosed with fibroids/endometriosis when I was 35 after I had an ultrasound for kidney stones. I don't have severe pain but I do have other symptoms and none of my other doctors ever questioned it.
For further reading, I highly recommend Bleed: Destroying Myths and Misogyny in Endometriosis Care by Tracey Lindeman. It's incredibly illuminating about treatment options and how to best navigate the reproductive healthcare system.
I had both an ovarian cyst (due to Mirena IUD) and very large fibroid when I had my hysterectomy. I had no symptom for the cyst other than lower back pain, and no symptoms for the fibroid other than lower abdominal bloating. Both were discovered during a CAT scan for something else. I was referred in gynaecology for treatment. I was first seen by the resident who it turns out, had not read my chart. During his physical exam, I yelped and complained he was hurting me, responded: “You’re fine, it doesn’t hurt.” He then proceeded to say there was nothing wrong with me. I asked: “What about the CAT scan results?”Oops. So I asked to see his boss, a female gynaecologist, who is lovely and kind. Ince removed, my cyst was orange-sized, and my uterus about 3-months gestational size. And this dude had felt nothing on exam, and denied my pain... He operated with the nice lady - to this day I hope I complained about him out loud while being under LOL.
This really hit home for me as I’m lying on the couch this morning recovering from a DaVinci myomectomy (that’s the robot kind!). My fibroids were discovered during an ultrasound preparatory to starting fertility treatment. I had no severe pain, heavy periods, or anything else, though I think I’m going to find that some random cramps or aches that I always dismissed are gone once I’m recovered. My biggest advice to anyone who is diagnosed with fibroids is to remember that you’re your own best advocate. Tests are not always accurate! I had two transvaginal ultrasounds, one with fluid to make everything more visible, and an MRI, and all of them indicated something different to what the surgeon actually found in my uterus.
I’m really grateful for everyone here who’s talked about fibroid recurrence. My head has been in the immediate fertility journey and not in the long term! That’s definitely something I need to ask more questions about.
This is so important, and all my love to these people. I had problems after my daughter was born and ended up several years later having an ovarian cyst the size of a tennis ball (not fruit!) and other endometrial tissue all over. First had that ovary removed and symptoms were better for a couple of years, then had a full hysterectomy and felt better while I was still in the hospital. The doctor told me I must have a very high pain tolerance and i definitely want that on my tombstone.
I didn't have fibroids, but what I later learned were very heavy periods, requiring large amounts of ibuprofen to manage the pain so I could function. I was anemic my whole life till menopause, and not a single doctor, including my gynecologists, ever thought to ask about why, or about periods beyond "are they regular?" So no treatment. It's depressing to read that nothing has really changed.
Thank you so much for this, and thank you to all those who shared their stories in the article and in the comments. I was diagnosed with fibroids at age 45 a little over two years ago, after a year or so of increasingly heavy periods. I have four, and they are thankfully not painful. My doctor discussed all the options and I decided to try birth control, which cut the bleeding to almost none for almost two years.
Meanwhile, a few months after my diagnosis, my mother was diagnosed with a very rare, aggressive, metastatic uterine cancer that killed her in six months. So at my annual visit to my gynecologist last year, a month after my mom died, we discussed a hysterectomy. She said I was certainly a candidate based on the increasing size of my fibroids and my (new) family history, and left the decision to me to think about. I wasn't ready to schedule it yet, and then we had several additional emergency situations in my family that made it not a good time.
But this year I've been bleeding more again, and my doctor said the fibroids have continued to grow, and so I have just this week scheduled the surgery for August. I did have an endometrial biopsy last week, and it was normal. At 47, I've had my kids. Reading all these stories has reinforced my decision -- and has also made me very thankful I found a good gynecologist who listened, thoroughly checked me out, explained all the options, and let me decide. I hope I have as good an outcome as all of you who reported being so glad you had the hysterectomy.
Without changing the subject too much, I also want to say a few things based on my mom's experience, for anyone who might need to hear them:
1. ANY post-menopausal bleeding is abnormal. Get it checked out right away, and if your uterus is enlarged, make sure you find out why. Evidently my mom's uterus was enlarged about 9 months before her diagnosis, but the gyn was moving away or something and didn't follow up or tell her to see someone else. The cancer spread and was only discovered after she got a fast-growing tumor on her collarbone.
2. If you are diagnosed with any cancer, but especially a rare one, get yourself as fast as you can to the best cancer center you can for a second opinion. Make sure the pathologists are as sure as they can be about exactly what kind of cancer you have, so the oncologists can identify the best way to treat it. Ask your doctor how many patients they have treated with this kind of cancer, and if it's not many, find a doctor who has seen more of it. Ask them to be honest with you about your chances for survival, or for how long you might be able to live the kind of life you want to live. And if the answers are not optimistic, then be honest with yourself and your family about what kind of treatments you want and, if they don't work, how you want to spend your final days.
I'm 3 days past the 1 year anniversary of my myomectomy and I teared up reading these stories. The gaslighting I had during my journey was unbelievable and my experience has led me to literally have PTSD during my period. That being said, I'm thankful for all I learned about my body, my health, and our f'ed up healthcare system.
For anyone questioning - there are options. It does get better. You are worth it. ❤️
I cried reading this because I have been dealing with large and medium sized fibroids for YEARS and I can't get any doctors to do anything about it or help me. In my area a lot of doctors have left the practice and it's hard to even get a provider... As in in my area you can't even get a primary care provider unless it's a non MD like a nurse practitioner. I respect them but sometimes you need a doctor! I'm so frustrated and gaslit and I'm a privileged person with insurance..I can't get care!!
Wow ok, I am taking notes from this article to talk about fibroids with my gyno at my next appointment. I'm in my mid-20s and have a low dose hormonal IUD, and I don't really bleed at all with this type of birth control. But before it I had the copper IUD, which made my already bad periods even worse. I consider myself relatively educated on sexual health but I've never even considered that I might have fibroids. My grandmother had really bad periods for most of her life, then got a hysterectomy sometime around middle age but never shared why - and now I wonder if she had fibroids. It's crazy that these are so common and yet we rarely ever hear about it, so thank you for sharing these stories.
I never really thought about fibroids because my period problems were not of the long, heavy, and painful kind - though every so often I'd have a bout of heavier periods - they just dragged on forever in this light and gunky way - like two weeks, sometimes, where it just would never quite stop. There are so many weird symptoms! But then I found out I had one small fibroid, which wasn't a big deal until a couple of years later when I started to have pain if my bladder was too full - for a couple months I thought I had a UTI but then realized it always happened at the start of my cycle. One ultrasound later and it turned out that sucker had ballooned to like 10 cm. When I got a hysterectomy in February, my uterus was five times the expected size. No fun.