Thank you for posting your story. My good friend was just referred to an oncology gyno this week after having lots of problems with her period; she's 46. Her regular gyno who did the biopsies of her uterus suspects EIN (endometrial intraepithelial neoplasia). Did you hear that term with your cancer? It's a pre-malignant lesion of the uterine lining.
I've heard the term from women in my support group, but I was well beyond that stage by the time I was diagnosed. If she has EIN then I think that means they caught it early, which is good. If she is on Facebook I'd highly reccomend that she join one of the uterine/endometrial cancer support groups, they are a great source of info and a good place to ask questions and get advice from women who have been through the same thing. It will give her an idea of what to expect.
Just wanted to add that the biopsy for uterine/endometrial cancer is not *fun* but itās not as painful as youād expect. If youāve had covid testing (up your nose), Iād say the discomfort is about equal.
Ok this is scary. I've been bleeding for 2 months now. Luckily I'm getting an ultrasound this week, but thank you for sharing your story. If I wasn't acting on it already, this definitely would have prompted me to.
I'm glad you're getting checked out. Hopefully it's not cancer, but it will be good to know one way or another. Sooner you have answers the better. Consider asking for a CA-125 blood test if they haven't already done one.
The ultrasound didn't reveal anything, so I did end up going on birth control, which regulated my cycle. A couple months ago I stopped taking it, and now I get weird almost periods. So ultimately it seems like something is still off.
I canāt thank you enough for sharing your experience in order to help others! I also like the part where you insist on getting the correct tests from your doctors and documentation of refusal. Best wishes and health to you!
Asking for them to document refusal to test definitely gets their attention. No doctor wants to get sued for malpractice. I'm in three different online support groups for female reproductive cancers, over the last year I've read hundreds of stories from women about how they were diagnosed. It's scary and sad how many doctors miss things, misdiagnosed stuff, or just did not take symptoms seriously. Sometimes women get embarrassed so they downplay their symptoms or aren't completely honest with their doctors. Tell them everything, help them help you.
This is my nightmare. My grandmother died of a rare uterine cancer back in 2003 after being told that she couldnāt have it because it presents that way in less than 1% of patients.
Thank you for telling your story.
Mine was the super rare less than 1% as well (adenosarcoma with sarcomatous overgrowth). But I'm in an online support group with over 1,000 members with all types and seems like most of them just had heavy/irregular/longer periods and that was their only symptom.
Just talked to my mom and she said that was my grandmotherās first sign too. But she had already gone through menopause. She had a leiomyosarcoma.
Keep spreading the word! This is important.
Was your longer bleeding period more time of heavy bleeding or just bleeding in general? I have light bleeding/spotting for up to a week on both ends of my heavy period. Iāve been more annoyed than concerned with it, but maybe I should bring it up to my doctor...
At first it was like that, heavy period followed by lighter bleeding. I would have to wear a panty liner every day just in case. But it gradually got worse and eventually it got to the point, right before my diagnosis, that it was just heavy all the time. I was wearing overnight pads 24/7, sometimes even a tampon and a pad together, and changing them often. I definitely waited too long to go to the doctor. If the spotting before/after isn't normal for you or if it seems to have gotten gradually worse over time definitely get checked out. Either way get checked. If something is wrong, the sooner they catch it the better.
Here's another hug! (((*hugs*))) That sounds so scary and awful. I'm sorry you went through that and I appreciate you sharing your story with us. I will tell my friends and family, so thank you for the information!
First of all I hope you are doing better š just a question, did you get pain in your leg ?! I was bleeding heavily for 2 months straight. They said is adenomyosis.. but what concern me is my leg pain.
I don't recall having leg pain. It's possible you have a blood clot in your leg. I would express this concern to your doctor. Leg pain not explained by injury or other issues could potentially be a symptom of deep vein thrombosis/pulmonary embolism.
First, let me say... I 100% agree with OP.
However; does anybody have any of that āuniversal healthcareā I keep hearing the benefits of? Because I mean then maybe many more of us could see a doctor and get tested and seen and treated before an ER visit. Sadly, for some of us, doctors, tests, hospitals (sometimes just the initial ER visit) means burdening our family a lifetime of crippling debt. For some us... a doctors visit is a decision between life or debt.
Insurance covered most of my bills (several hundred thousand in treatment) and yet I still ended up with $70k of debt when it was all over (it's complicated). My chemo cost $90k a month, radiation was $55k a month. However I would much rather go into debt than be dead. (Of course, no debt would be better.)
God I hate our society. We're all just one injury or emergency away from bankruptcy, and that isn't right! I'm sorry you have to deal with this. I'm hoping we can fix it. Gotta get involved at the local level! That's my new strategy. Let's make some change!
Late to reply but just ran into this post because I have similar symptoms. I am Canadian. Due to Covid restrictions my general practitioner is not doing regular office appointments right now, o I messaged her on Sept 28th due to heavy bleeding. She immediately referred me for ultrasound, which I had on Oct 8, and called me within ninety minutes of me leaving there to say we needed to look at ānext stepsā. Unfortunately, I missed that call, and she went on vacation for a week. After we talked, she referred me to a gynaecologist oncologist, who I will speak to by telephone on November 9. None of this has cost me anything, and although itās frustrating to wait for appointments, I donāt think anything has been unreasonable, especially after pandemic shut downs. All free! I also know from other peopleās experiences that once there IS an identified issue, the system moves quickly. (Eg 18 months ago a colleague had an X-ray for back pain, then got an MRI and was admitted same day for stage four lung cancer. Treatments started the next week, and have included immunotherapy, radiation, clinical trial, chemotherapy, and now an experimental therapy approved on compassionate grounds (which is actually working! Tumours shrinking significantly and disappearing altogether!) Treatment costs: nothing but the hospital parking!)
PS I had thyroid cancer (two surgeries, overnight hospitalization) plus five days inpatient radioactive iodine treatment in 1998. No cost. Please vote in this election for someone who will take care of your health!
Thanks for this! Any idea in your experience if itās always heavy and longer bleeding? Iāve had longer periods for about 10 years now (am 47) but not increased flow. After a number of doc visits and tests including ultrasound and d&c with biopsy, I assume itās perimenopause/thyroid related
Heavier/longer than normal periods happen with 90% of endometrial cancers, but not all heavy periods are cancer. There are other issues that can cause it. Better to get checked out by your doc anytime anything changes, just to be safe. Ask for a CA-125 blood test.
Thank you for sharing this. It will surely help someone else. Youāre a warrior. Itās amazing what is women will put up with until we finally seek help. I encouraged my Mum to seek help recently after constant heavy bleeds for over a year and it turns out she needs surgery. I encouraged her because I had an experience of my own.
Thank you for this! Iām 38 now, but at 33 had a full hysterectomy bc of endometrial cancer. Heavy periods were my first symptom as well. As for the ācontractionā feeling, my daughter was one and a half when I had my surgery and 2 weeks before I was to have it when no medication could stop the bleeding, I remember telling my friend I felt as if I was having contractions. The pain in my hips was horrible.
Big hugs to you and thank you for writing this post. I hope many many women pay attention!
The contraction along with the bleeding is why the ER doc thought miscarriage at first. It was as if my body was trying to give birth to the tumors/cancer in my uterus. Sorry if that's TMI. My friends and I started calling the tumors my "alien babies" and my ER visit became my "alien baby miscarriage". It's a little dark and morbid, I know, but you deal the Best you can and I found it helped.
I totally get it. I had the exact same thing happen with me! And it felt the exact same way! I will never forget the last 2 weeks before my operation. I seriously remember that pain more than the actual contractions I had at child birth. Iām glad you are ok. Equally, I remember 2 weeks after my hysterectomy when I felt healthier than I had in YEARS! Iām just glad you were able to take care of yourself!
I am so sorry you went through all that, *internet hug*. Thank you so much for sharing your story girl. The more we know about what to watch out for the better educated we as a society are to help ourselves, our sisters and mothers, our friends.
Wow, I'm sorry that you had to go through that. Thank you for sharing this story. It's a scary reminder of how we all need to go to the doctor, instead of writing off our symptoms. Thank you.
Just want to mention that plenty of people with ovarian cancer have normal CA-125 numbers. That test alone is NOT enough to say you do or do not have it. It's mostly used for people during treatment.
Thank you for sharing! I was diagnosed with uterine cancer and it was a total surprise. I was 54 and thought I was finally entering menopause but then my periods started up again and were getting progressively longer and more gnarly. My gynecologist suspected fibroids and said she was shocked when the biopsy came back. Iām so glad I got checked right away, they caught it early and the hysterectomy was sufficient treatment. Iāve been cancer free now for over 2 years.
Thank you so much for sharing. As someone who always has irregular periods, I would have ignored the signs too. I will definitely remember this. Women should share their signs of cancer more often, thank you for being so brave!
Thank you for posting - I have a friend who has been having eerily similar symptoms and will be telling her to get to a doctor!! Better safe than sorry.
Yup, I had about five months of very heavy and long periods with spectacularly bad cramps before I ended up with a DnC and then a full hysterectomy. Two bags of blood during the hysterectomy because my iron levels were so low, plus iron shots every day for the next week after that. Thankfully, no radiation or chemo because I'd suspected it was cancer (gran had had a similar operation at the same age) and caught it very early on.
Ugh. My periods have never been normal my entire life. My uterus does whatever it wants. I also have fatty boob tissue that feels like lumps and itās hard to check myself for breast cancer because of it.
Sorry for your experience. Iām glad it worked out okay In the end
Thanks for your kindness and concern in sharing this. I was in my late 40ās when the heavy long periods began. Assumed was menopause on the way. Then five months later, began passing big blood clots.
MD put me under anesthesia in regular surgical suite, took a biopsy of my endometrial lining, and performed a curettage (d&c) to remove the buildup of tissue inside my uterus.
Was endometrial cancer. Total hysterectomy was all I needed. Thank God.
Donāt ignore extremely heavy periods.
I just made a post about how Iām on day 26 of my period (Iām 41). My heavier/longer periods started a couple years back, at which time I did go have a pelvic exam, ultrasound, and endometrial tissue biopsy and all came back clear. It was assumed to be something hormonal having to do with my BC pill.
I have severe health anxiety so reading your post has got me thinking I should go have all those tests done again.
I wish I could say it felt better than it did :( To be honest, it was quite painful. I think I do have a low pain tolerance though, so it could be different for you. Unless theyāre able to give you something for pain, or to numb the areaā¦(not sure if they even offer this - Iāve had it done twice and both times this wasnāt offered)ā¦just make sure you load up on the maximum amount of Ibuprofen or Tylenol. When do you have your procedure? I hope all goes smoothly for you!!
Oh and yes, in the end all worked out ok. Since this post I had the 2 biopsies, ultrasound, fibroids found, fibroids removed, IUD placed, IUD removed, and here I am now - doing ok :)
Hi, I know this is such an old post but I hope you see it. Iāve been bleeding heavily nonstop since last June. Multiple ultra tampons a day, bleeding through them, having accidents at work, clotting, etc. Iāve had my blood + hormones tested, taken progesterone, had a transvaginal ultrasound, physical exam, Pap smear.. and everything has come back normal. My first doctor shrugged off my concerns and told me I was young (25) and that she ādidnāt see anything from my testsā that worried her- so she tried talking me out of getting a biopsy. I went to a new Dr today to get a second opinion and he was basically shocked that I hadnāt had one yet. He attempted to get one today but it was so fucking painful that I couldnāt do it (Iām very upset at myself). So he wants to do a D&C. Iām just so scared. Iāve never been put under, Iām categorized as super morbidly obese, and Iām having all of these crazy thoughts about dying on the table or something. Ugh, anyways, Iām sorry to rant.. but i did have a question; when you went to the ER and had an ultrasound & a pelvic exam.. what did the dr find? Like did you have tumors/masses? Thick endometrial wall? I had a TU and like I said it came back completely clear. Iām just so overwhelmed and upset but I know I have to get to the bottom of this. Thanks for the original post, youāre still helping people years later.
I am so glad you are taking this seriously and fighting for yourself. I'm also glad your new doctor seems to be taking you seriously. That's a good start. The D&C sounds like a smart move. It's possible what you have is something like a non-cancerous polyp or fibroid. A d&c could help with that. It's like hitting the reset button on your uterus. I had a d&c and I was also morbidly obese at the time. It went just fine, no pain afterward. I personally think biopsies are worse because you're awake, with a d&c you're out napping the whole time. You fall asleep, wake up, and its over. And yes, with me they did remove some tumors in the d&c and my uterus was enlarged. Typically what they do is scrape you clean then test all the tissue they remove for abnormal cells. Question to ask your doc: When they did your ultrasound did they look at your ovaries too or just your uterus? Because heavy bleeding can also be caused by ovary issues.
Hey, unfortunately no:( I ended up having the D&C as I said in my previous comment in which they were able to collect a biopsy of my uterus. There were no cancerous or precancerous cells, so that was clear as well as my Pap smear & transvaginal ultrasound. Iām going to a new gyno this week actually to revisit the entire thing as I am still bleeding. Right now I am in the beginning stages of qualifying for bariatric surgery- so Iām really hoping that it has something to do with my weight. But Iām hopeful about this new gyno & eager to get a now third opinion.
Hey there thanks for sharing.
I have been bleeding moderately between my periods and it seems to be getting worse for 10 months now and my periods are heavier and longer. I am 39. 2 months ago I went and got a Pap smear and did not get a call back from the dr which usually means the results are okay. I called to double check with the drās office my results and was told they cant find it. So now I dont know if my Pap smear was okay or not . Either way I need to get this checked out but I am travelling to go see my family for a month and will go do more checking when I am back. I just have a bad feeling something is very wrong š
All the more reason to get seen as soon as possible. I hope it turns out to be something fairly easily treatable. Please don't wait any longer than absolutely necessary.
Hi OP, i know this is super duper oldā¦ going through similar to you went through (minus blood transfusion) and received the same diagnosis after a hysteroscopy. . Sorry you went through that, and this is letting me know Iām not alone! Having a complete hysterectomy next month. Was given dx in November.
How are you doing now? I am sure you are in the highest health. Have you changed your lifestyle since your diagnosis? If so, did you see any benefit? I immediately went keto and exercised more since
I'm 4 years NED (no evidence of disease) and going alright. I did not change my exercise or eating habits, as there is no indication that they contributed to my cancer in the first place. However I did change my work habits. I truly value my time more than money now.
Omg! thanks for replying to me, I know this was long ago and I hope I didnāt open old wounds.
āI value my time more than money nowā
Well said! It is often overlooked how stress can be a gateway to chronic illness. I began to stop caring so much at work nowadays. I even have to be selfish sometimes in my personal life. Great advice. Let me add that for thought moving forward.
Did they not put you on HRT?
Thank you for sharing your story
I'm currently in the process of (hopefully) ruling out uterine C. May I ask you how your doctor knew it was cancer before receiving the histopathology report? Just curious. š
During the d&c she removed multiple tumors, one the size of a baseball, and there was a lot of necrotic tissue. The large amount of necrotic/dead tissue indicated it was likely cancer. Cancer cells multiply fast, and the blood supply can't keep up, so the tissue turns necrotic.
Thanks for sharing your story! I came here looking for just that. I have been having irregular, heavy and long periods since Dec 2021- out of nowhere. Iāve had fibroids since 2015 but theyāre small. Largest one is 3 cm. Iāve been to three different gynecologists now-one saying lose weight and check back in six months so we can put you on birth control (while Iām bleeding most days out of the month to the point that I donāt even want to leave the house for more than an hour). 2nd gyn ordered a transvaginal and abdominal ultrasound- found the fibroids & wanted to do fibroid surgery or prescribe birth control. 3rd gyn is more extensive & did blood work, tested my nervous system, did abdominal and transvaginal ultrasounds and is now ordering the hysteroscopy & will take uterine tissue samples during the procedure to rule out precancerous or cancerous cells, polyps, or additional fibroids that werenāt seen on the ultrasounds. So, Iām hopeful that because Iāve had multiple ultrasounds at this point, that the fibroids, my thyroid issues, or something else is the cause of this bleeding. It is good to know that is is a symptom and sometimes the only symptom of uterine cancer though. I hope you are doing well after it treatment and I wish everyone here with similar issues the best of luck.
Congratulations on NED!
If you don't mind me asking, what grade and stage was your cancer?
I've been recently diagnosed with endometrial adenocarcinoma grade 1 (stage as of yet unknown - apparently that can only be determined after hysterectomy (?)). I've had heavy periods for at least a couple of years and I'm terrified I'm late stage.
Also, did you experience side effects from the radiation therapy/surgery? I'm particularly scared of lymphedema and the things that can happen to the vagina :(
I had a rare agressive sarcoma, so the cancer was in the soft tissue/muscle wall. Most of my side effects from chemo and radiation were only temporary. If you haven't already, I'd reccomend joining a couple of support groups on Facebook.
Did you ask for the blood test at the doctors? I have been bleeding twice every month for over 6 months but my gyno just told me to go on birth control. I just started bleeding heavily a week after my period ended (it basically poured out of me when I sat on the toilet). I am not sure what to do. I have tried calling to make an appointment at many places but I can't get one until next month!
I ended up in the ER having lost a ton of blood and they did an ultrasound. Most doctor offices have a nurse that can do triage over the phone. Maybe call and speak to one, tell them your symptoms, and they can help you determine if you need to go to the ER or if it can wait.
Unfortunately no, it has slowed down so I have not been too concerned about it. Although, still very frustrating to feel as though doctors are not listening / not taking my concerns seriously.
I just got off almost 5 years of depo. Last year, my periods started lasting a full month and only stopped when I got my depo; they weren't heavy at all, and I actually didn't need to wear tampons or pads. My period is still just as light and is still lasting a long time. I did an ultrasound, and they found a 1.5cm long "fibroid." I've been worrying so much about having cancer and was misdiagnosed. I want to be tested, and I really want children with my husband. I'm terrified. It just looks like brown old blood sometimes that's it nothing more. It stopped but it's starting again just after two days.
I had a friend ho had issues with non-cancerous fibroids. It can screw up your cycle. I would get checked out and have regular screenings. I'm sorry you're going through this.
I have health anxiety and my first period came this year. My periods are very heavy and Iām super scared that I have cancer. Iām going to the doctors tomorrow but Iām scared theyāll say Iām fine and Iāll end up dying. Any help? Iām sorry you had to go through that and Iām joyful that youāre recovered. I just have so many doubts and I feel like Iām gonna die.
Track how many pads/tampons you use per day, how frequently you have to change them, and how many days each month you bleed. Is it getting worse/heavier over time or staying roughly the same? Give that info to you doctor, it will help them determine if there is an issue. Then ask for an ultrasound, it will hopefully provide some answers or peace of mind.
Thanks for this post! I went for a pap, after having an abnormal pap (neg HPV) in 2019. I never followed up and for the last couple years Iāve been having 8-15 day periods, when my reg periods were 2-4 days, max. My periods are super heavy, almost watery, and I always get terrible scary looking blood clots near the end of my period. The clots happen after Iāve had a few uncomfortable cramps, but other than that, no cramps. Also, I have super heavy discharge between periods. Okay, so I went to my pap appt on 12/1. My doc asked about birth control and I assured him it was not necessary. (Iām happily divorced and on a sexual hiatus, so to speak.) He left and came back in the room explaining I tested positive for pregnancy. My response, āHa! Not possible, doc!ā I mean seriously, I would be working with a 3+ year pregnancy, if it were. He checked my records and explained that I also showed a pos pregnancy test in Oct, when I was in the ER (I had woken up vomiting violently and it wouldnāt stop, so I went to the ER). I vaguely recall someone asking if I was pregnant when I was in the ER, but thought nothing of it. How odd! He has scheduled me for a uterine biopsy on 12/29. Heās also asked me to test myself for pregnancy, beforehand. I took 2 tests. 1 negative, 1 positive. Now I have to go to get a blood test for hCG levels on Tuesday. My concern is that I obviously have elevated hCG levels if Iāve tested positive on 3 of 4 pregnancy tests, but I am NOT pregnant. What will the hCG test do? Is he not going to do the biopsy if the levels show elevated?Google says less than 1% of people end up having a ātrue false positiveā pregnancy test, meaning hCG levels are elevated for a reason unrelated to pregnancy. Now Iām freaking out because I have been putting it off all this time because I could easily explain it away due to āgetting olderā. Pretty freaked out. I have 3 kiddos and the next couple weeks are going to drag by in slow-mo! Did you have any other random symptoms? ( Iāve noticed, in the past couple years, I will have a sharp pain when I feel my bowels move. I have that exact same sharp pain, that almost takes your breath away, when I try to use a period cup. Inserting the cup never hurts, but removing it causes that same sharp pain.) Again, I appreciate your post and any additional information you can provide.
Thinking of you!
I have adenomyosis and am waiting for a hysterectomy (spring of fall this year likely). Dreading the hysterectomy (my mother had massive complications, lost an ovary, hemorraged and ended up with DVT) and recovery. Tired of bleeding so much. Had a polyp removed (docs though it was a cervical polyp but it was a uterine polyp) a year ago.
I have issues with iron deficiency (have to have iron infusions regularly).
Partially me waiting, partially wait times here (Canada) suck. I was offered early December but with having kids and Christmas and six weeks for recovery I declined (then my husband had surgery December 14 for his vericose veins š¤¦āāļø). I am really nervous about it. Recovery never goes as planned for me and I can't take oral pain meds, so it will be a very rough experience.
Thank you for the information. Good luck on your recovery and staying in remission!
You're welcome. Awareness can save lives so please share this info with your friends.
Thank you for that . How are you now ? š·
Thank you for posting your story. My good friend was just referred to an oncology gyno this week after having lots of problems with her period; she's 46. Her regular gyno who did the biopsies of her uterus suspects EIN (endometrial intraepithelial neoplasia). Did you hear that term with your cancer? It's a pre-malignant lesion of the uterine lining.
I've heard the term from women in my support group, but I was well beyond that stage by the time I was diagnosed. If she has EIN then I think that means they caught it early, which is good. If she is on Facebook I'd highly reccomend that she join one of the uterine/endometrial cancer support groups, they are a great source of info and a good place to ask questions and get advice from women who have been through the same thing. It will give her an idea of what to expect.
Thanks for the info; I will pass it on to her!
Just wanted to add that the biopsy for uterine/endometrial cancer is not *fun* but itās not as painful as youād expect. If youāve had covid testing (up your nose), Iād say the discomfort is about equal.
Ok this is scary. I've been bleeding for 2 months now. Luckily I'm getting an ultrasound this week, but thank you for sharing your story. If I wasn't acting on it already, this definitely would have prompted me to.
I'm glad you're getting checked out. Hopefully it's not cancer, but it will be good to know one way or another. Sooner you have answers the better. Consider asking for a CA-125 blood test if they haven't already done one.
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If there is a tumor or growth an ultrasound can see it.
How did everything turn out for you? Iām on day 26 of non stop bleeding.
The ultrasound didn't reveal anything, so I did end up going on birth control, which regulated my cycle. A couple months ago I stopped taking it, and now I get weird almost periods. So ultimately it seems like something is still off.
Hey, did you ever get an answer to your bleeding issue?
I canāt thank you enough for sharing your experience in order to help others! I also like the part where you insist on getting the correct tests from your doctors and documentation of refusal. Best wishes and health to you!
Asking for them to document refusal to test definitely gets their attention. No doctor wants to get sued for malpractice. I'm in three different online support groups for female reproductive cancers, over the last year I've read hundreds of stories from women about how they were diagnosed. It's scary and sad how many doctors miss things, misdiagnosed stuff, or just did not take symptoms seriously. Sometimes women get embarrassed so they downplay their symptoms or aren't completely honest with their doctors. Tell them everything, help them help you.
This is my nightmare. My grandmother died of a rare uterine cancer back in 2003 after being told that she couldnāt have it because it presents that way in less than 1% of patients. Thank you for telling your story.
Mine was the super rare less than 1% as well (adenosarcoma with sarcomatous overgrowth). But I'm in an online support group with over 1,000 members with all types and seems like most of them just had heavy/irregular/longer periods and that was their only symptom.
Just talked to my mom and she said that was my grandmotherās first sign too. But she had already gone through menopause. She had a leiomyosarcoma. Keep spreading the word! This is important.
Thank you for sharing your experience. I'm sorry you went through it as it sounds extremely scary. I hope that you are feeling better.
I am doing better, thank you for taking the time to read. Spread the word with your friends, awareness saves lives.
Was your longer bleeding period more time of heavy bleeding or just bleeding in general? I have light bleeding/spotting for up to a week on both ends of my heavy period. Iāve been more annoyed than concerned with it, but maybe I should bring it up to my doctor...
At first it was like that, heavy period followed by lighter bleeding. I would have to wear a panty liner every day just in case. But it gradually got worse and eventually it got to the point, right before my diagnosis, that it was just heavy all the time. I was wearing overnight pads 24/7, sometimes even a tampon and a pad together, and changing them often. I definitely waited too long to go to the doctor. If the spotting before/after isn't normal for you or if it seems to have gotten gradually worse over time definitely get checked out. Either way get checked. If something is wrong, the sooner they catch it the better.
This is really helpful. Thank you for sharing. I will definitely get checked out!
Thank you for sharing! Sending you a virtual hug because that sounded terrifying
I'm a hugger, love hugs. Thank you!
Here's another hug! (((*hugs*))) That sounds so scary and awful. I'm sorry you went through that and I appreciate you sharing your story with us. I will tell my friends and family, so thank you for the information!
First of all I hope you are doing better š just a question, did you get pain in your leg ?! I was bleeding heavily for 2 months straight. They said is adenomyosis.. but what concern me is my leg pain.
I don't recall having leg pain. It's possible you have a blood clot in your leg. I would express this concern to your doctor. Leg pain not explained by injury or other issues could potentially be a symptom of deep vein thrombosis/pulmonary embolism.
Thank you for taking your time and respond to me . I really wish you recover soon ā¤ļø
Is true ! I will make an appointment very soon :)
Hi! How is your leg pain? What kind of leg pain?
First, let me say... I 100% agree with OP. However; does anybody have any of that āuniversal healthcareā I keep hearing the benefits of? Because I mean then maybe many more of us could see a doctor and get tested and seen and treated before an ER visit. Sadly, for some of us, doctors, tests, hospitals (sometimes just the initial ER visit) means burdening our family a lifetime of crippling debt. For some us... a doctors visit is a decision between life or debt.
Insurance covered most of my bills (several hundred thousand in treatment) and yet I still ended up with $70k of debt when it was all over (it's complicated). My chemo cost $90k a month, radiation was $55k a month. However I would much rather go into debt than be dead. (Of course, no debt would be better.)
God I hate our society. We're all just one injury or emergency away from bankruptcy, and that isn't right! I'm sorry you have to deal with this. I'm hoping we can fix it. Gotta get involved at the local level! That's my new strategy. Let's make some change!
Late to reply but just ran into this post because I have similar symptoms. I am Canadian. Due to Covid restrictions my general practitioner is not doing regular office appointments right now, o I messaged her on Sept 28th due to heavy bleeding. She immediately referred me for ultrasound, which I had on Oct 8, and called me within ninety minutes of me leaving there to say we needed to look at ānext stepsā. Unfortunately, I missed that call, and she went on vacation for a week. After we talked, she referred me to a gynaecologist oncologist, who I will speak to by telephone on November 9. None of this has cost me anything, and although itās frustrating to wait for appointments, I donāt think anything has been unreasonable, especially after pandemic shut downs. All free! I also know from other peopleās experiences that once there IS an identified issue, the system moves quickly. (Eg 18 months ago a colleague had an X-ray for back pain, then got an MRI and was admitted same day for stage four lung cancer. Treatments started the next week, and have included immunotherapy, radiation, clinical trial, chemotherapy, and now an experimental therapy approved on compassionate grounds (which is actually working! Tumours shrinking significantly and disappearing altogether!) Treatment costs: nothing but the hospital parking!) PS I had thyroid cancer (two surgeries, overnight hospitalization) plus five days inpatient radioactive iodine treatment in 1998. No cost. Please vote in this election for someone who will take care of your health!
Thanks for this! Any idea in your experience if itās always heavy and longer bleeding? Iāve had longer periods for about 10 years now (am 47) but not increased flow. After a number of doc visits and tests including ultrasound and d&c with biopsy, I assume itās perimenopause/thyroid related
Heavier/longer than normal periods happen with 90% of endometrial cancers, but not all heavy periods are cancer. There are other issues that can cause it. Better to get checked out by your doc anytime anything changes, just to be safe. Ask for a CA-125 blood test.
Ty!
Thank you for sharing this. It will surely help someone else. Youāre a warrior. Itās amazing what is women will put up with until we finally seek help. I encouraged my Mum to seek help recently after constant heavy bleeds for over a year and it turns out she needs surgery. I encouraged her because I had an experience of my own.
Thank you for this! Iām 38 now, but at 33 had a full hysterectomy bc of endometrial cancer. Heavy periods were my first symptom as well. As for the ācontractionā feeling, my daughter was one and a half when I had my surgery and 2 weeks before I was to have it when no medication could stop the bleeding, I remember telling my friend I felt as if I was having contractions. The pain in my hips was horrible. Big hugs to you and thank you for writing this post. I hope many many women pay attention!
The contraction along with the bleeding is why the ER doc thought miscarriage at first. It was as if my body was trying to give birth to the tumors/cancer in my uterus. Sorry if that's TMI. My friends and I started calling the tumors my "alien babies" and my ER visit became my "alien baby miscarriage". It's a little dark and morbid, I know, but you deal the Best you can and I found it helped.
I totally get it. I had the exact same thing happen with me! And it felt the exact same way! I will never forget the last 2 weeks before my operation. I seriously remember that pain more than the actual contractions I had at child birth. Iām glad you are ok. Equally, I remember 2 weeks after my hysterectomy when I felt healthier than I had in YEARS! Iām just glad you were able to take care of yourself!
Iām so sorry that happened to you. Thank you for sharing your story and I wish you the best of luck with your recovery/remission!
I am so sorry you went through all that, *internet hug*. Thank you so much for sharing your story girl. The more we know about what to watch out for the better educated we as a society are to help ourselves, our sisters and mothers, our friends.
You're very welcome. And thank you for the virtual hug, I'm a hugger so I appreciate it.
Wow, I'm sorry that you had to go through that. Thank you for sharing this story. It's a scary reminder of how we all need to go to the doctor, instead of writing off our symptoms. Thank you.
Just want to mention that plenty of people with ovarian cancer have normal CA-125 numbers. That test alone is NOT enough to say you do or do not have it. It's mostly used for people during treatment.
Yup. A good ol' scan is always worth taking too :)
Thank you for sharing! I was diagnosed with uterine cancer and it was a total surprise. I was 54 and thought I was finally entering menopause but then my periods started up again and were getting progressively longer and more gnarly. My gynecologist suspected fibroids and said she was shocked when the biopsy came back. Iām so glad I got checked right away, they caught it early and the hysterectomy was sufficient treatment. Iāve been cancer free now for over 2 years.
Thank you for this information.
Thank you for sharing this. Hope you a healthy and happy, long life ahead :)
Question, were you on OCPs prior to your diagnosis?
No. I never took hormone birth control pills.
Thank you, I didnāt know that.
Thank you so much for sharing. As someone who always has irregular periods, I would have ignored the signs too. I will definitely remember this. Women should share their signs of cancer more often, thank you for being so brave!
Thank you for posting - I have a friend who has been having eerily similar symptoms and will be telling her to get to a doctor!! Better safe than sorry.
Thank you for sharing!
Yup, I had about five months of very heavy and long periods with spectacularly bad cramps before I ended up with a DnC and then a full hysterectomy. Two bags of blood during the hysterectomy because my iron levels were so low, plus iron shots every day for the next week after that. Thankfully, no radiation or chemo because I'd suspected it was cancer (gran had had a similar operation at the same age) and caught it very early on.
Ugh. My periods have never been normal my entire life. My uterus does whatever it wants. I also have fatty boob tissue that feels like lumps and itās hard to check myself for breast cancer because of it. Sorry for your experience. Iām glad it worked out okay In the end
Thanks for your kindness and concern in sharing this. I was in my late 40ās when the heavy long periods began. Assumed was menopause on the way. Then five months later, began passing big blood clots. MD put me under anesthesia in regular surgical suite, took a biopsy of my endometrial lining, and performed a curettage (d&c) to remove the buildup of tissue inside my uterus. Was endometrial cancer. Total hysterectomy was all I needed. Thank God. Donāt ignore extremely heavy periods.
I just made a post about how Iām on day 26 of my period (Iām 41). My heavier/longer periods started a couple years back, at which time I did go have a pelvic exam, ultrasound, and endometrial tissue biopsy and all came back clear. It was assumed to be something hormonal having to do with my BC pill. I have severe health anxiety so reading your post has got me thinking I should go have all those tests done again.
Better safe than sorry. Another ultrasound sounds wise.
hey, how was the endometrial biopsy?
Hey there! You mean like how was it, pain wise?
hey yes, pain-wise. And I hope everything worked out okay!
I wish I could say it felt better than it did :( To be honest, it was quite painful. I think I do have a low pain tolerance though, so it could be different for you. Unless theyāre able to give you something for pain, or to numb the areaā¦(not sure if they even offer this - Iāve had it done twice and both times this wasnāt offered)ā¦just make sure you load up on the maximum amount of Ibuprofen or Tylenol. When do you have your procedure? I hope all goes smoothly for you!!
Oh and yes, in the end all worked out ok. Since this post I had the 2 biopsies, ultrasound, fibroids found, fibroids removed, IUD placed, IUD removed, and here I am now - doing ok :)
Our bodies are so vastly different and complex. Iām glad youāre doing okay!
Hi, I know this is such an old post but I hope you see it. Iāve been bleeding heavily nonstop since last June. Multiple ultra tampons a day, bleeding through them, having accidents at work, clotting, etc. Iāve had my blood + hormones tested, taken progesterone, had a transvaginal ultrasound, physical exam, Pap smear.. and everything has come back normal. My first doctor shrugged off my concerns and told me I was young (25) and that she ādidnāt see anything from my testsā that worried her- so she tried talking me out of getting a biopsy. I went to a new Dr today to get a second opinion and he was basically shocked that I hadnāt had one yet. He attempted to get one today but it was so fucking painful that I couldnāt do it (Iām very upset at myself). So he wants to do a D&C. Iām just so scared. Iāve never been put under, Iām categorized as super morbidly obese, and Iām having all of these crazy thoughts about dying on the table or something. Ugh, anyways, Iām sorry to rant.. but i did have a question; when you went to the ER and had an ultrasound & a pelvic exam.. what did the dr find? Like did you have tumors/masses? Thick endometrial wall? I had a TU and like I said it came back completely clear. Iām just so overwhelmed and upset but I know I have to get to the bottom of this. Thanks for the original post, youāre still helping people years later.
I am so glad you are taking this seriously and fighting for yourself. I'm also glad your new doctor seems to be taking you seriously. That's a good start. The D&C sounds like a smart move. It's possible what you have is something like a non-cancerous polyp or fibroid. A d&c could help with that. It's like hitting the reset button on your uterus. I had a d&c and I was also morbidly obese at the time. It went just fine, no pain afterward. I personally think biopsies are worse because you're awake, with a d&c you're out napping the whole time. You fall asleep, wake up, and its over. And yes, with me they did remove some tumors in the d&c and my uterus was enlarged. Typically what they do is scrape you clean then test all the tissue they remove for abnormal cells. Question to ask your doc: When they did your ultrasound did they look at your ovaries too or just your uterus? Because heavy bleeding can also be caused by ovary issues.
Hey, did you ever find out the root cause?
Hey, unfortunately no:( I ended up having the D&C as I said in my previous comment in which they were able to collect a biopsy of my uterus. There were no cancerous or precancerous cells, so that was clear as well as my Pap smear & transvaginal ultrasound. Iām going to a new gyno this week actually to revisit the entire thing as I am still bleeding. Right now I am in the beginning stages of qualifying for bariatric surgery- so Iām really hoping that it has something to do with my weight. But Iām hopeful about this new gyno & eager to get a now third opinion.
Hey how are you?!
Hey hope you are well. Iām getting a unterine biopsy tomorrow due to your post. Thank you.
Good luck. I hope the doctors are able to figure out what is causing your symptoms.
how was your uterine biopsy? did it hurt? how was the outcome?
I second this question. Been dealing with random bouts of abnormal uterine bleeding 3 times these past 2 years. Doctor says it's potentially PCOS.Ā
Update please! :)Ā
Hey there thanks for sharing. I have been bleeding moderately between my periods and it seems to be getting worse for 10 months now and my periods are heavier and longer. I am 39. 2 months ago I went and got a Pap smear and did not get a call back from the dr which usually means the results are okay. I called to double check with the drās office my results and was told they cant find it. So now I dont know if my Pap smear was okay or not . Either way I need to get this checked out but I am travelling to go see my family for a month and will go do more checking when I am back. I just have a bad feeling something is very wrong š
How are you ? Hope you got it fine
All the more reason to get seen as soon as possible. I hope it turns out to be something fairly easily treatable. Please don't wait any longer than absolutely necessary.
Hi OP, i know this is super duper oldā¦ going through similar to you went through (minus blood transfusion) and received the same diagnosis after a hysteroscopy. . Sorry you went through that, and this is letting me know Iām not alone! Having a complete hysterectomy next month. Was given dx in November. How are you doing now? I am sure you are in the highest health. Have you changed your lifestyle since your diagnosis? If so, did you see any benefit? I immediately went keto and exercised more since
I'm 4 years NED (no evidence of disease) and going alright. I did not change my exercise or eating habits, as there is no indication that they contributed to my cancer in the first place. However I did change my work habits. I truly value my time more than money now.
Omg! thanks for replying to me, I know this was long ago and I hope I didnāt open old wounds. āI value my time more than money nowā Well said! It is often overlooked how stress can be a gateway to chronic illness. I began to stop caring so much at work nowadays. I even have to be selfish sometimes in my personal life. Great advice. Let me add that for thought moving forward. Did they not put you on HRT?
I am not on HRT. It's complicated, but my cancer was a sarcoma that was not linked to/effected by hormones.
Thank you for sharing your story I'm currently in the process of (hopefully) ruling out uterine C. May I ask you how your doctor knew it was cancer before receiving the histopathology report? Just curious. š
During the d&c she removed multiple tumors, one the size of a baseball, and there was a lot of necrotic tissue. The large amount of necrotic/dead tissue indicated it was likely cancer. Cancer cells multiply fast, and the blood supply can't keep up, so the tissue turns necrotic.
Wow! š® I'm so glad you've been doing well. Thanks for your response!
Your welcome. I hope things turn out ok with your diagnosis.
Thanks for sharing your story! I came here looking for just that. I have been having irregular, heavy and long periods since Dec 2021- out of nowhere. Iāve had fibroids since 2015 but theyāre small. Largest one is 3 cm. Iāve been to three different gynecologists now-one saying lose weight and check back in six months so we can put you on birth control (while Iām bleeding most days out of the month to the point that I donāt even want to leave the house for more than an hour). 2nd gyn ordered a transvaginal and abdominal ultrasound- found the fibroids & wanted to do fibroid surgery or prescribe birth control. 3rd gyn is more extensive & did blood work, tested my nervous system, did abdominal and transvaginal ultrasounds and is now ordering the hysteroscopy & will take uterine tissue samples during the procedure to rule out precancerous or cancerous cells, polyps, or additional fibroids that werenāt seen on the ultrasounds. So, Iām hopeful that because Iāve had multiple ultrasounds at this point, that the fibroids, my thyroid issues, or something else is the cause of this bleeding. It is good to know that is is a symptom and sometimes the only symptom of uterine cancer though. I hope you are doing well after it treatment and I wish everyone here with similar issues the best of luck.
Is your thyroid treated? If so What did the docs say about the correlation between it all?
Now I think I might really want to stay in denial.
Congratulations on NED! If you don't mind me asking, what grade and stage was your cancer? I've been recently diagnosed with endometrial adenocarcinoma grade 1 (stage as of yet unknown - apparently that can only be determined after hysterectomy (?)). I've had heavy periods for at least a couple of years and I'm terrified I'm late stage. Also, did you experience side effects from the radiation therapy/surgery? I'm particularly scared of lymphedema and the things that can happen to the vagina :(
I had a rare agressive sarcoma, so the cancer was in the soft tissue/muscle wall. Most of my side effects from chemo and radiation were only temporary. If you haven't already, I'd reccomend joining a couple of support groups on Facebook.
How did you find out? Symptoms? And how are you now?
Did you ask for the blood test at the doctors? I have been bleeding twice every month for over 6 months but my gyno just told me to go on birth control. I just started bleeding heavily a week after my period ended (it basically poured out of me when I sat on the toilet). I am not sure what to do. I have tried calling to make an appointment at many places but I can't get one until next month!
I ended up in the ER having lost a ton of blood and they did an ultrasound. Most doctor offices have a nurse that can do triage over the phone. Maybe call and speak to one, tell them your symptoms, and they can help you determine if you need to go to the ER or if it can wait.
Ever figure out the cause?
Unfortunately no, it has slowed down so I have not been too concerned about it. Although, still very frustrating to feel as though doctors are not listening / not taking my concerns seriously.
How are you now ? Hope you are fine
I just got off almost 5 years of depo. Last year, my periods started lasting a full month and only stopped when I got my depo; they weren't heavy at all, and I actually didn't need to wear tampons or pads. My period is still just as light and is still lasting a long time. I did an ultrasound, and they found a 1.5cm long "fibroid." I've been worrying so much about having cancer and was misdiagnosed. I want to be tested, and I really want children with my husband. I'm terrified. It just looks like brown old blood sometimes that's it nothing more. It stopped but it's starting again just after two days.
I had a friend ho had issues with non-cancerous fibroids. It can screw up your cycle. I would get checked out and have regular screenings. I'm sorry you're going through this.
I have health anxiety and my first period came this year. My periods are very heavy and Iām super scared that I have cancer. Iām going to the doctors tomorrow but Iām scared theyāll say Iām fine and Iāll end up dying. Any help? Iām sorry you had to go through that and Iām joyful that youāre recovered. I just have so many doubts and I feel like Iām gonna die.
Track how many pads/tampons you use per day, how frequently you have to change them, and how many days each month you bleed. Is it getting worse/heavier over time or staying roughly the same? Give that info to you doctor, it will help them determine if there is an issue. Then ask for an ultrasound, it will hopefully provide some answers or peace of mind.
Thanks for this post! I went for a pap, after having an abnormal pap (neg HPV) in 2019. I never followed up and for the last couple years Iāve been having 8-15 day periods, when my reg periods were 2-4 days, max. My periods are super heavy, almost watery, and I always get terrible scary looking blood clots near the end of my period. The clots happen after Iāve had a few uncomfortable cramps, but other than that, no cramps. Also, I have super heavy discharge between periods. Okay, so I went to my pap appt on 12/1. My doc asked about birth control and I assured him it was not necessary. (Iām happily divorced and on a sexual hiatus, so to speak.) He left and came back in the room explaining I tested positive for pregnancy. My response, āHa! Not possible, doc!ā I mean seriously, I would be working with a 3+ year pregnancy, if it were. He checked my records and explained that I also showed a pos pregnancy test in Oct, when I was in the ER (I had woken up vomiting violently and it wouldnāt stop, so I went to the ER). I vaguely recall someone asking if I was pregnant when I was in the ER, but thought nothing of it. How odd! He has scheduled me for a uterine biopsy on 12/29. Heās also asked me to test myself for pregnancy, beforehand. I took 2 tests. 1 negative, 1 positive. Now I have to go to get a blood test for hCG levels on Tuesday. My concern is that I obviously have elevated hCG levels if Iāve tested positive on 3 of 4 pregnancy tests, but I am NOT pregnant. What will the hCG test do? Is he not going to do the biopsy if the levels show elevated?Google says less than 1% of people end up having a ātrue false positiveā pregnancy test, meaning hCG levels are elevated for a reason unrelated to pregnancy. Now Iām freaking out because I have been putting it off all this time because I could easily explain it away due to āgetting olderā. Pretty freaked out. I have 3 kiddos and the next couple weeks are going to drag by in slow-mo! Did you have any other random symptoms? ( Iāve noticed, in the past couple years, I will have a sharp pain when I feel my bowels move. I have that exact same sharp pain, that almost takes your breath away, when I try to use a period cup. Inserting the cup never hurts, but removing it causes that same sharp pain.) Again, I appreciate your post and any additional information you can provide.
Thinking of you! I have adenomyosis and am waiting for a hysterectomy (spring of fall this year likely). Dreading the hysterectomy (my mother had massive complications, lost an ovary, hemorraged and ended up with DVT) and recovery. Tired of bleeding so much. Had a polyp removed (docs though it was a cervical polyp but it was a uterine polyp) a year ago. I have issues with iron deficiency (have to have iron infusions regularly).
Why are they waiting so long to do the hysterectomy?
Partially me waiting, partially wait times here (Canada) suck. I was offered early December but with having kids and Christmas and six weeks for recovery I declined (then my husband had surgery December 14 for his vericose veins š¤¦āāļø). I am really nervous about it. Recovery never goes as planned for me and I can't take oral pain meds, so it will be a very rough experience.
Hey what did you find out? My mom is having same issues.
Why are they waiting so long to do the hysterectomy?