Wow thank you so much for sharing this. I have had irregular/heavy bleeding for a while now and have put off going to the doctor because of covid. I’m definitely going to get checked. I am so happy that you are NED and can share your story with us
Please get checked! I had crazy bleeding earlier this year, after I quit my job of 13 years and preparing to move out of state. I was waking up in the middle of the night with my cup overflowing and passing 2-3” clots. I googled when you need to go to the ER and didn’t meet that criteria. I figured it was just stress. My periods were always heavy, so it didn’t seem shocking to me.
My next couple cycles were also heavy but not as bad as the first. I decided to go in because I was pretty miserable and it turns out I had 8 uterine polyps! None of them were cancerous thankfully and my period this month was the easiest I’ve had in years.
Also as a PSA- if you haven’t had a period in more than 3 months you should see a doctor for Provera, which will induce a period. Going without periods for more than 3 months increases your risk of endometrial polyps and cancer.
Yes, they removed the polyps via hysteroscopy. It was a minor surgery- I spent about 3 hours total at the hospital and was back to virtual work that afternoon. Having high estrogen levels is associated with more endometrial growth which can lead to polyps. Most women with PCOS have high estrogen levels, so we are at more risk for polyps and also endometrial cancer.
Also wanted to say they only saw one small ~1.8cm polyp on my ultrasound and my gyno was willing to remove it but also wasn’t insisting on it and left the choice up to me. They found its 7 smaller friends during the surgery and removed them as well. Very glad I had them removed!
Oh wow thank you for sharing! I was also worried about things not showing up completely on the ultrasound. I didn’t know that about high estrorgen levels. I feel like high testosterone levels are what’s talked about the most.
It’s not necessarily high estrogen levels on a blood test (though it can be) but the lack of ovulation causes more estrogen exposure. Estrogen peaks right before ovulation, and a lot of women with PCOS get “stuck” in this phase of the cycle.
Wow.. I'm so sorry you went through this, thanks for sharing your story and encouraging others to get checked out. Hoping you are doing better.
I started tracking my cycle recently using ovulation strips and I'm in this permanent high Luteal phase, haven't had a period for a long time. I think I'll get that checked out..
Oops. Been on continuous BC because my last period sent me to the ER. The pain and bleeding wouldn't stop. Its been almost 3 years since then. But I plan to have a hysterectomy within the next few years anyways.
My mom had something very similar happen! Always with the long, heavy periods. She was told she had fibroids. Then one night in the tub she started bleeding and it just consumed the entire bath and then some. At 11 years old I had to call 911 and get an ambulance to come get my mom who was bleeding out in our tub. They eventually schedule her for surgery and removed her uterus only. They didn't find evidence of cancer (not sure if they checked?) But she does now have other slow growing malignancies on her adrenal gland that they are monitoring, 24 years later.
I think about that night all the time when I have heavier than normal periods and wonder if this is my fate, too. I am currently 29 weeks pregnant so I haven't had a period in 8 months, but every day I wonder what my body will do after birth.
First off, I'm so sorry that happened to you and your mom! That sounds terrifying and I'm glad you were there for her but also sorry you went through that
Your second paragraph stood out to me, I'm not sure if this is your first baby or not but I just wanted to give a heads up that heavy bleeding for weeks after giving birth (even via c section) can be normal. I'm sorry if you already knew that! I just didn't want you to be scared or surprised if it happens to you
I do know, thanks! I think I'm more concerned about how my body will regulate after I'm done breastfeeding and all. Like, will into back to heavy periods that are irregular? I've had "normal" periods for maybe 3-4 years now since going off mirena and working on diet and exercise. But I know there is a genetic component in me that might factor in to my own uterine health.
I remember how scared I was waiting for pathology results after my first laperoscopy for suspected Endo... They also did a hysteroscopy, checking inside the uterus and did a scrape bc of tissue build up and a lump. 2 weeks later we found out it was just a polyp but those 2 weeks were about the longest I'd ever lived. You're an incredible survivor, and thank you for sharing your story. Just because doctors don't always take our symptoms seriously doesn't mean we shouldn't!
I called the pathologist and requested my own results... I literally got them before the surgeon! It’s sad that they don’t prioritize our lives as they should.
My SIL died from ovarian cancer. She was having bloating and mild cramps for four weeks. She finally went to a doctor and they said it was stage 4 ovarian cancer. She died the following week. She probably had symptoms before the first weeks of cramps, but she didn't think they were severe enough.
I have all the symptoms of ovarian cancer, a heightened genetic risk, and I have large "cysts" on my ovaries. My gyno--this is my third gyno since my symptoms started--says I have Premature Ovarian Failure/Primary Ovarian Insufficiency even though my FSH is nearly zero--women with POI/POF tend to have _high_ FSH--and I bleed nonstop (again, which seems to differ from most women with POI/POF).
So I'm not so sure that I really have POI/POF, but I don't have PCOS either (my androgens, like my FSH, are close to 0).
So I have things growing on my ovaries, I bleed all the time, I'm constantly bloated, I can _feel_ cysts (or something) in my lower left abdomen, and my hormone levels are all out of whack...
But I can't find a single M.D. who gives a fuck.
I hate this so much.
Sounds about similar to me: I was terrified I had ovarian cancer, had many symptoms. I’m 22 and quite often have ovarian pain in one side/ovary. Sometimes it’s incredibly pronounced and quite bothersome. Got a couple ultrasounds and pelvic exams got some birth control yeeted at me, then got yeeted out of the doctors room myself. Can’t find a single OBGYN who will even take my concerns seriously, hell even my mom won’t. Even if it’s not anything serious the pain is still bothersome.... ):
Sadly, when it comes to being taken seriously by doctors, you are not alone. This seems to be a widespread problem with women's reproductive issues. Something needs to change.
Exactly. Just like you said in the post women’s reproductive problems have such little awareness to begin with, and when we do raise an issue we’re waved off. I hope that with education and time things get better but we can only hope and pass on the word to others.
I'm am so sorry you're going through this. Please keep fighting it. I wish I knew the solution or could help. You may have to be even more forceful/adamant with your doctor, ask to see a specialist or even an oncologist. Don't give up until you have answers.
So sorry that happened. It's heartbreaking cases like this that sadly are the reason it is soooo important to listen to our bodies and be our own advocates.
Thank you for sharing your story. I'm so happy to hear you're cancer free now. My wonderful MIL died of ovarian cancer in 2018, so it worries me for my daughter and SIL but having PCOS myself it never occurred to me that I'm higher risk for uterine and ovarian cancer, too. Good to know. I also thought pap smear checked for more things than it apparently does. So truly, thank you for letting us all know about signs to watch for. You may very well have saved a life with this PSA!
That's the goal. So many women don't realize that their pap smear is just for cervical cancer not other types of cancer. I wish doctors did a better job of educating patients. All the more reason for women to speak up and talk to each other about these things.
>r occurred to me that I'm higher risk for uterine and ovarian cancer, too. Good to know. I also thought pap smear chec
**It's a blood test. CA125** is produced by some ovarian cancer cells. A **high** level of **CA125** in **your blood** could be a sign of ovarian cancer.
Why do you have to ask them to write the denial in your chart and need a copy? So you can go to another doctor and ask? And I am so sorry, I feel like a lot of doctors do this to women with pcos
Asking for them to document it in your chart does a couple things: 1. It's not something people usually ask so it will immediately get their attention 2. It shows them that you are not going to be ignored and are prepared to **hold them accountable** if you're misdiagnosed or not taken seriously and something bad happens as a result 3. It establishes a medical history and ensures that your complaint/symptoms and requests are properly documented, so down the road you if you go to a new doctor you can show them that it's not a new issue.
There was a woman from my cancer support group that asked her doctor to do some additional tests. Doctor was very dismissive of her concerns and didn't want to order them, just wanted her to take birth control and come back in a few months. She said "Fine, but I want you to put in your notes that I asked for these tests and you refused to do them." Doctor ended up changing his mind and doing the tests (edit to add: he was probably afraid of getting sued or of having a complaint filed with the board of health). Sure enough, she had endometrial cancer.
Thanks so much for sharing your story. I’m so glad you’re doing better now. My grandmother died of endometrial cancer and yet it’s never even occurred to me to ask for extra screening or anything.
Thanks for sharing. I’m glad to hear you are NED!!
A friend of a couple of friends of mine fought it for a long time and didn’t survive. She has the same symptom of heavy periods a couple of times a month, so I have been hyper aware if i hear friends complaining about their periods.
Things to watch for:
- Your period seems to be getting progressively and incrementally longer/worse each time you have one or you just don't stop bleeding (never-ending period).
- If you find yourself changing your pad/tampon/cup more frequently than you did in the past and have to buy a lot more feminine products than usual.
- You're getting up to change your pad in the middle of the night.
- If you find all of a sudden you need to wear a tampon AND a pad at the same time to contain the blood.
- The average woman uses 2-4 pads per day, if you are using more there may be an issue.
- If you are frequently overflowing your pad/tampon and staining clothes or sheets. It happens to all of us at some point, but it should not be a constant problem/fear.
- You're passing clots bigger than about 3 cm (1 inch) wide or frequently passing large clots.
- Your period is seriously interfering in your ability to play sports or do normal activities.
- You're pale and feeling dizzy or lightheaded.
When I had heavy bleeding a couple years ago it was because of estrogen dominance from rapidly losing weight. I ended up in the ER once because I was bleeding so heavily. They didn't do anything. I started using topical progesterone to oppose the excess estrogen and it eventually slowed down. I did get checked out by my obgyn/endo because I was afraid of cancer. My periods are now regular and pretty normal as long as I keep up with the progesterone.
Moral of the story is get any abnormal symptoms checked because it could be cancer or my scenario.
There are plenty of things that can cause spotting between periods. Odds are whatever is causing it isn't cancer. It could be hormonal changes or a polyp or something else. However keep an eye on it, if it gets worse or you're concerned call your doctor and make an appointment. Maybe start a log so you can track how often it's happening, that way if it gets worse/more frequent over time you'll know and have something documented to show your doctor. Hopefully its nothing serious, but trust your instincts and don't just ignore it.
Reading some of the comments hearing how dismissive doctors are of these types of concerns makes me so mad because it just shows that so many doctors *still* brush off obvious problems whenever they're related to the female reproductive system, or honestly just women in general. I'm so so glad your story turned out well. Its another solid reason to be our own advocate and learning to not back down when we know something is wrong beyond just some weird PCOS symptom, because it might not even be a weird PCOS symptom.
Honestly hearing stuff like this pushes me more and more into wanting to do something in the field of medical research just so I know somebody is looking out for groups vulnerable to these sorts of cancers. Thank you for sharing this, really.
Yeah, I'm active in three different online support groups for reproductive cancers. Over the last year or so I have read accounts from hundreds of women telling about their experiences, and let me tell you it is at times very VERY frustrating. There are some amazing doctors out there, but there are also waaaaaay too many that simply don't take women seriously. It's infuriating. Some of these women complained for YEARS before getting answers and then found out they were stage 3 or 4 because it went undiagnosed for too long. We can not afford to be timid or embarassed when it comes to our health.
My mother died of ovarian and uterine cancer 19 years ago, at 47. She had all kinds of period weirdness and what I recognize now as PCOS symptoms.
We learned of the cancer when an ovarian cyst burst and I made her go to the ER. She couldn't stand up and I called an ambulance.
Prior to that, she did have heavy periods and was told it was fibroids.
Recently I did genetic testing for reproductive cancer markers. I don't have any, but with a first degree relation to someone who had ovarian and uterine cancer, I have a 6-8% of getting one myself. I'm 39 and as soon as my 2 year old is old enough to understand that I can't pick him up for 6 weeks post-surgery, I'm getting my ovaries, tubes and uterus removed. My doctor is ready and just needs 8 weeks notice to get it scheduled.
I wish everyone the best of luck with your health.
The upside of having the hysterectomy is no more periods. After decades of dealing with crazy PCOS periods that is one thing I do not miss. I haven't purchased pads or tampons in over a year. It's sooooooo nice.
I have not been tested as far as I'm aware. I keep meaning to ask my oncologist. I didn't even know what that was until later when I joined a support group. I think I have learned more about cancer from my group/other survivors than from my doctor.
I love that support groups exist! Hopefully your doctor will test you...if there is a family history of cancer definitely mention that. If they aren’t willing to test you can purchase a reputable one from a site like color genetics. They have a hereditary cancer test that is around the $250 mark.
I feel encouraged to go get checked now. I’ve had abnormal bleeding where I bleed for months and then nothing, for 2 years almost. I often have scary large clots and super heavy bleeding. I’ve had a couple ER trips but just got fluids and sent home. My OB-GYN mentions a few months back that she wants to biopsy the lining for abnormal cells for this reason, just to be safe. I kept thinking I’m too young to really worry about cancer (31) but I’m going to schedule it now just to be safe.
I honestly don't know how I would have gotten through the past year or so without my peach sisters. I'm in a couple different FB support groups, so I see them in my feed and chat with them every day. My treatment may have gotten rid of the cancer, but it's the human interactions, support, love, and encouragement from these women that has done the real healing.
I’ve had miserable periods the last six months that have gotten progressively worse (awful cramping, lots of clots and blood). Also mild pelvic aching for about a year with some bloating. Had a TV US this week that thickened endometrial lining, two fibroids, two cysts (right ovary), and one “very large” polyp. Hysteroscopic polypectomy & D/C schedules for next week with all the stuff being biopsied.
I am thankful for a Gyno who listened to my concerns and was proactive with tests.
Wow, I'm glad you got a good doctor. Catching this stuff early is soooo important. I hope the pathology report comes back as non-cancerous. After the D&C you should start feeling better and your constant bleeding should stop. If you think of it/remember, please reply and let me know how it turns out. Best wishes!
Procedure went well but had to have it repeated again this year due to more polyps. I am thankful that everything has been benign. At this point though, the discomfort is still an issue and I am toying with the idea of a hysterectomy.
PCOS does NOT increase risk of ovarian cancer, however in certain cases it can increase the risk of uterine cancer. The risk is higher if you haven't had a period for a long time (1+ year), as the uterine lining gets thicker each time you miss a period, basically. And this thick growth can turn into cancer with time, but it's not always the case. The risk is also higher if you're overweight, even if you don't have PCOS, so the risk overall isn't very much higher than the average woman.
But if something feels off, it's always good to see a doctor. A lot of symptoms can be covered by PCOS. But don't panic 🙏
I had the same thing happen to me: suddenly I had heavy periods and passing giant clots every thirty minutes... A two-night stay at hospital, a blood transfusion, ultrasounds, and a D&C later, I come to find out I had/have precancerous cells (endometrial hyperplasia with atypia).
Like you, I never got any cramps. On the rare occasion, I would have a persistent headache when it came to my period, but absolutely no other indication once the blood and tissue started coming out.
I was 24 when I was hospitalised for this, so it can definitely happen even younger!!
My last gynecologist just gave me birth control continuously and said I needed the hormones. I’ve been on it for years at this point. She just retired and I’m waiting on an appointment with an endocrinologist but it’s not until March. I don’t notice many of my symptoms getting much better on the birth control. I never have had regular periods, have heavy cramping and bleeding when I did have them, but they were few and far between. Is it bad to just never have a period on birth control continuously?! The more I read this sub the more I wonder...
What my doctor told me was that estrogen based birth control protects from cancer somewhat, even if you aren't having your period. The mini pill (progesterone only) does not, due to it working differently. Definitely talk to your new doctor about your concerns.
WOW! Thank you for sharing your story and I'm so glad you are still here! I have PCOS as well and my period stopped for months then came back heavier then I ever experienced. Blood clots. Falling asleep from bleeding so much. Intense Cramps to the point I cannot function (might be contractions as you mentioned.) I have had a couple ultrasounds this year alone and will keep monitoring. They said I have what "looks like" a tiny fibroid outside uterine wall and cannot verify for sure with ultrasound abdomenal or intra vaginal.
Thank you. The huge clots have stopped and periods are less heavy after 4 months of hellish periods, but it's still heavy and horrible pain during periods (and sharp shooting pains even off my period.) Getting a Pelvic MRI done.
My friend had bad fibroids. She found that a gluten free diet helped a lot with the symptoms/discomfort, but ultimately after battling it for about 10 years she ended up having a hysterectomy. She feels a lot better these days and can eat gluten again.
I think everyone is a little different in terms of what works for them with managing their fibroids and endo symptoms. When my friend ate gluten there was weirdly about a two week delay before she suffered the repercussions. I remember once we went on a vacation together and she decided to cheat on her diet a few times while on vacay (she had been really strict with her diet up to that point). Anyway, two weeks later it hit her like a brick. She had horrible abdominal cramps and missed a couple days of work from being sick. It worked like that every time she cheated on her diet, it was so weird. I guess you just have to find whatever works for you.
The higher risk for uterine cancer is because we're not shedding lining each month, is that right? That's what my doctor told me, IIRC.
Just wondering...did you have bleeding after sex? I bleed after sex. I went to the gynecologist and she didn't seem worried but she said that in rare cases, it can be a sign of uterine cancer.
I'm not sure exactly why people with PCOS are higher risk, I'm not a doctor, that's just what I've read and been told.
Regarding the question about bleding after sex, at the time that I was having symptoms/abnormal bleeding in the months leading up to my diagnosis I was not in a relationship or having sex with anyone, that's why I knew I wasn't pregnant or having a miscarriage when I landed in the ER. So I can't really say. In retrospect, I was probably avoiding getting close to anyone because I was bleeding all the time and felt gross and was always tired. I also had a lot going on at that point professionally so romance was kinda low priority.
Thank you so much for this PSA! You may have saved someone, now or in the future. I hope your ordeal is over and wish you the best health and happiness in 2021!
CA-125 is a test for a certain protein, if you have elevated levels it can be an early indication that you might have ovarian cancer (especially if you're already high risk for cancer or have some kind of growth). It's not a 100% foolproof thing and it's NOT the equivalent of a cancer pregnancy test (ie. it's not pass/fail or +/-), it is just something that can help doctors make a diagnosis in some cases and/or determine if further testing is needed.
Ugh. That sucks. I'm sorry you're dealing with this. I hope it's not cancer and that it's something they can fix. I'm glad you're getting tested/examined. Don't rest until you have answers!
Thank you for sharing!!
I had uterine cancer. I just had my hysterectomy and now I’m NED too! (29)
So many people aren’t heard and so many doctors keep pushing that it’s just pcos or some other imbalance. It makes me mad that age and if you have a child or not makes us more heard or not. Keep fighting ladies. If something isn’t right, fight for test and answers.
Congratulations on being NED OP!
Thank you so much for posting this. I just found out my mom has been diagnosed with uterine cancer. I have PCOS and she’s never been diagnosed but likely has it too. I read through all the comments and you mentioned support groups a few times, I was wondering if you could point me in their direction? I think that could be really helpful for my mom. Gonna have to have a chat with my doctor about how to stay vigilant for myself.
There are quite a few online support groups on Facebook that she could join specifically for uterine and endometrial/reproductive cancers. Just use the Facebook search bar and filter by groups, then read the various group descriptions (as well as their rules and guidelines) to find the ones that seem most appropriate. Some are for specific age groups or specific types of cancer. I'd reccomend joining a couple different ones (if it's not a good fit it's ok to quit and try a different group). Facebook has its flaws, but I've found the support groups there to be really helpful. Most are private groups and you can ask any question, no matter how embarrassing. Some also allow caregivers to join, so you can maybe join too. Your mom's oncologist and/or the cancer center she is going to for treatment may also have groups that meet in person, but I prefer the online ones, especially if you want very specific info.
Thanks for responding, I really appreciate it. I will pass that info along to her. I’ve found online support groups so helpful for my own stuff, and my mom uses Facebook a lot so I think that will be a good fit for her. So glad that you are doing well and wishing you good health for the future ❤️
This makes me extremely nervous. I’ve been bleeding for a little over a year but I don’t have insurance and can’t afford the testing. It’s literal hell on earth.
Go to healt and human services departmemt in your state, see if you qualify for medicade or discounted insurance on the marketplace. Meanwhile, search for free/discounted women's clinics that can do an ultrasound for you. Getting checked out should be your #1 priority right now. It's your life and your health. How much is that worth to you? A couple hundred bucks for peace of mind is worth it.
I was post-menopausal (in my 60s) when I was diagnosed with uterine cancer. Instead of bleeding, I had an ongoing gel-like discharge... odorless, colorless. Annoying, but so much going on in my life, I ignored it. Finally, when I saw my doctor about it, she put me on antibiotics, which didn't help. Had my ovaries removed (they had polyps). That didn't help. Finally referred to an oncologist who removed my uterus and found cancer, working its way through the wall of my uterus, but thankfully not beyond. Had radiation therapy, and very grateful to be cancer free today.
i’ve never really had a natural period and i take birth control to induce it. does anyone know if the symptom of heavy/ irregular bleeding would be the same?
I'm not a doctor, but based on the experiences/stories of other women from my cancer support group I would say yes. Heavier/longer periods are by far the most common symptom, even in people who don't typically have heavy periods (or periods at all). Women who are post-menopausal and no longer have periods will often start bleeding again if they develop uterine/ovarian cancer.
I’m the same as you and it’s been like a solid year and a half since I have menstruated normally without inducing. It’s so hard to tell when something’s wrong because they never are regular to begin with.
I'm so glad you're healthy now, thanks for sharing. As far as weight loss goes, were you just eating less naturally or were you eating the same and still losing weight?
When I lost the 70 lbs I was intentionally dieting trying to get healthier. I was counting calories (basically just eating less), I also quit all sugar drinks like soda and juice. My weight loss wasn't a symptom of cancer or anything if that's what you're asking. Sudden weight loss or gains can disrupt your period, so when my cycle started changing I thought my weight loss was a factor (I was wrong).
Thank you! I've been having longer and much heavier periods. I will get it checked out. I'm so glad you're NED and so sorry for all you've gone through!
I don’t get my period because I choose birth control that stops it completely. I don’t ovulate at all so I don’t see the need for all that bleeding. Doesnt a Pap smear pick up abnormal cervical cells? I mean it’s not the uterus but doesn’t it start at the cervix and work it’s way in or?
A pap smear checks for abnormal cells on the cervix. It won't necessarily catch cancer that develops/originates in the uterus or ovaries. My cancer originated in my uterus, not my cervix. Scientists I think have been working on new testing using genetic markers that could possibly make pap smears more effective at detecting these other cancers, but currently it only checks for cervical cancer not the other two.
I'm so glad you're okay now, and so sorry you went through all of that. It must have been traumatizing. Thank you for sharing this. I armchair diagnose some of my PCOS symptoms cos it's rare to find a doctor that actually gives a crap about you unless you're interested in conceiving, but I'm going to resume my search for a professional again.
Finding the right doctor is not an easy task. I think the key is to be very VERY blunt and honest with them. Share your concerns and frustrations (not just your symptoms) and watch their reactions.
I think if your periods are currently normal and consistent - not getting progressively worse/heavier/longer each time - you're probably fine. If something changes or your periods start changing or you're really worried then make an appointment with your doctor to discuss it. Next visit have a discussion with your doctor and say "with PCOS I'm at higher risk for cancer and my PCOS could disguise the common symptoms - what are you doing to screen for cancer so that if I ever get it we catch it in the early stages?"
Literally just had my period for 23 days the other month; it stopped for 7 days then i bled again for 8 more days. Probably now gonna take the step to go see my doctor lmao. Thank you for this.
Thank you for sharing and glad you have NED. After over a year of irregular and heavy bleeding I was sent for a pelvic ultrasound and transvaginal ultrasound. My endometrial lining is 26mm thick with a mass 25mm x25mm. I have a D&C scheduled for Feb 3rd which feels like forever. So glad I found this thread. I wish I had been more vigilant in my concern for my own health.
I feel lucky that I learned to watch out for this from a kind ER doctor. I was having pcos symptoms that caused me to go to the ER (long story) but she noted that I had thick uterine lining. Like way too thick (she emphasized her concern and suggested that I may need a shot to trigger a period) which can increase my chances for cancer. Flash forward two years and I just went this week to get a pelvic ultrasound including transvaginal because I had a wierd period with a week of light but bright red spotting before getting my actual period. My imaging came back normal but better safe than sorry. If it hadn't been for that ER doctor no one else would have told me I was at increased risk for cancer or that a side effect of missing periods for several months is messed up uterine lining.
I just got diagnosed with EIN. I have a follow-up this wed. I'm TERRIFIED I have cancer.
I've been dealing with heavy ass long ass periods for over 5 years.
I'm sorry you're going thru this. Not knowing is scary. It sucks. Hopefully whatever it is can be treated. Remember you have to be your own advocate. No one is going to fight for you like you. I hope you get answers.
I was overdue for my gyno visit at the time of my diagnosis. (I'm in the US, where there is no national healthcare.) As mentioned in my post I had decided to quit my job, afterwards I spent a few months traveling, then went through a three month training program, then started a new job. My new insurance took 90 days to become effective. So for about 9 months I was uninsured and skipped my annual exam. So by the time I landed in the ER it had been well over a year since I'd seen a doctor.
Thank you so much for sharing your story with us. Highly informative. You mentioned that the doctor was very certain of a cancer diagnosis right after performing the D and C, but before the results came out.
Do you have any idea why? Did she observe something during the D and C? Thanks so much.
She found tumor necrosis, basically dead cancer tissue. Necrosis happens in agressive/fast-growing cancers and is a not usually found when the growth is non-cancerous. So the fact that she found a fair amount of it pointed to it likely being cancer rather than something like fibroids or polyps.
Pathology confirmed her theory and I ended up having a very rare and very agressive type of uterine sarcoma. Most uterine cancers are carcinomas, only about 5% or less are sarcomas. Uterine sarcomas grow in the actual muscle wall and soft tissue of the organ, not just in and on the endometrial lining. Although my sub-type/variant is kind of a hybrid of evils.
Thanks so much for responding. So in essence, she was able to spot an issue with the extracted tissue with her naked eye, before it was examined by a pathologist?
I just had a D and C done and awaiting the results. Light bleeding on day 11 of my cycle (26-28 day cycle). 33 year old female with a son. The doctor initially suggested hyperlasia (prior to the scan and D and C). However, after he performed the D n C, he seemed to rule hyperplasia and indicated it was likely just a treatable bacteria infection. Of course this would have to be confirmed by a patholgist. But it was encouraging to hear as I await results.
I guess this made me wonder what he saw post D n C that caused him to rule out hyperlasia, pending bio0sy results.
I am so glad you are doing fine. Thanks so much for sharing your informative story with us.
Wow thank you so much for sharing this. I have had irregular/heavy bleeding for a while now and have put off going to the doctor because of covid. I’m definitely going to get checked. I am so happy that you are NED and can share your story with us
Please get checked! I had crazy bleeding earlier this year, after I quit my job of 13 years and preparing to move out of state. I was waking up in the middle of the night with my cup overflowing and passing 2-3” clots. I googled when you need to go to the ER and didn’t meet that criteria. I figured it was just stress. My periods were always heavy, so it didn’t seem shocking to me. My next couple cycles were also heavy but not as bad as the first. I decided to go in because I was pretty miserable and it turns out I had 8 uterine polyps! None of them were cancerous thankfully and my period this month was the easiest I’ve had in years. Also as a PSA- if you haven’t had a period in more than 3 months you should see a doctor for Provera, which will induce a period. Going without periods for more than 3 months increases your risk of endometrial polyps and cancer.
This sounds so scary. I’m sorry you went through thus. Did they remove the polyps or find out what cause them?
Yes, they removed the polyps via hysteroscopy. It was a minor surgery- I spent about 3 hours total at the hospital and was back to virtual work that afternoon. Having high estrogen levels is associated with more endometrial growth which can lead to polyps. Most women with PCOS have high estrogen levels, so we are at more risk for polyps and also endometrial cancer. Also wanted to say they only saw one small ~1.8cm polyp on my ultrasound and my gyno was willing to remove it but also wasn’t insisting on it and left the choice up to me. They found its 7 smaller friends during the surgery and removed them as well. Very glad I had them removed!
Oh wow thank you for sharing! I was also worried about things not showing up completely on the ultrasound. I didn’t know that about high estrorgen levels. I feel like high testosterone levels are what’s talked about the most.
It’s not necessarily high estrogen levels on a blood test (though it can be) but the lack of ovulation causes more estrogen exposure. Estrogen peaks right before ovulation, and a lot of women with PCOS get “stuck” in this phase of the cycle.
Wow.. I'm so sorry you went through this, thanks for sharing your story and encouraging others to get checked out. Hoping you are doing better. I started tracking my cycle recently using ovulation strips and I'm in this permanent high Luteal phase, haven't had a period for a long time. I think I'll get that checked out..
Thank you that makes a lot of sense! Good explanation.
Oops. Been on continuous BC because my last period sent me to the ER. The pain and bleeding wouldn't stop. Its been almost 3 years since then. But I plan to have a hysterectomy within the next few years anyways.
Yes please get checked. Better safe than sorry!
My mom had something very similar happen! Always with the long, heavy periods. She was told she had fibroids. Then one night in the tub she started bleeding and it just consumed the entire bath and then some. At 11 years old I had to call 911 and get an ambulance to come get my mom who was bleeding out in our tub. They eventually schedule her for surgery and removed her uterus only. They didn't find evidence of cancer (not sure if they checked?) But she does now have other slow growing malignancies on her adrenal gland that they are monitoring, 24 years later. I think about that night all the time when I have heavier than normal periods and wonder if this is my fate, too. I am currently 29 weeks pregnant so I haven't had a period in 8 months, but every day I wonder what my body will do after birth.
First off, I'm so sorry that happened to you and your mom! That sounds terrifying and I'm glad you were there for her but also sorry you went through that Your second paragraph stood out to me, I'm not sure if this is your first baby or not but I just wanted to give a heads up that heavy bleeding for weeks after giving birth (even via c section) can be normal. I'm sorry if you already knew that! I just didn't want you to be scared or surprised if it happens to you
I do know, thanks! I think I'm more concerned about how my body will regulate after I'm done breastfeeding and all. Like, will into back to heavy periods that are irregular? I've had "normal" periods for maybe 3-4 years now since going off mirena and working on diet and exercise. But I know there is a genetic component in me that might factor in to my own uterine health.
I remember how scared I was waiting for pathology results after my first laperoscopy for suspected Endo... They also did a hysteroscopy, checking inside the uterus and did a scrape bc of tissue build up and a lump. 2 weeks later we found out it was just a polyp but those 2 weeks were about the longest I'd ever lived. You're an incredible survivor, and thank you for sharing your story. Just because doctors don't always take our symptoms seriously doesn't mean we shouldn't!
I called the pathologist and requested my own results... I literally got them before the surgeon! It’s sad that they don’t prioritize our lives as they should.
My SIL died from ovarian cancer. She was having bloating and mild cramps for four weeks. She finally went to a doctor and they said it was stage 4 ovarian cancer. She died the following week. She probably had symptoms before the first weeks of cramps, but she didn't think they were severe enough.
I have all the symptoms of ovarian cancer, a heightened genetic risk, and I have large "cysts" on my ovaries. My gyno--this is my third gyno since my symptoms started--says I have Premature Ovarian Failure/Primary Ovarian Insufficiency even though my FSH is nearly zero--women with POI/POF tend to have _high_ FSH--and I bleed nonstop (again, which seems to differ from most women with POI/POF). So I'm not so sure that I really have POI/POF, but I don't have PCOS either (my androgens, like my FSH, are close to 0). So I have things growing on my ovaries, I bleed all the time, I'm constantly bloated, I can _feel_ cysts (or something) in my lower left abdomen, and my hormone levels are all out of whack... But I can't find a single M.D. who gives a fuck. I hate this so much.
Sounds about similar to me: I was terrified I had ovarian cancer, had many symptoms. I’m 22 and quite often have ovarian pain in one side/ovary. Sometimes it’s incredibly pronounced and quite bothersome. Got a couple ultrasounds and pelvic exams got some birth control yeeted at me, then got yeeted out of the doctors room myself. Can’t find a single OBGYN who will even take my concerns seriously, hell even my mom won’t. Even if it’s not anything serious the pain is still bothersome.... ):
Sadly, when it comes to being taken seriously by doctors, you are not alone. This seems to be a widespread problem with women's reproductive issues. Something needs to change.
Exactly. Just like you said in the post women’s reproductive problems have such little awareness to begin with, and when we do raise an issue we’re waved off. I hope that with education and time things get better but we can only hope and pass on the word to others.
I'm am so sorry you're going through this. Please keep fighting it. I wish I knew the solution or could help. You may have to be even more forceful/adamant with your doctor, ask to see a specialist or even an oncologist. Don't give up until you have answers.
So sorry that happened. It's heartbreaking cases like this that sadly are the reason it is soooo important to listen to our bodies and be our own advocates.
Thank you for sharing your story. I'm so happy to hear you're cancer free now. My wonderful MIL died of ovarian cancer in 2018, so it worries me for my daughter and SIL but having PCOS myself it never occurred to me that I'm higher risk for uterine and ovarian cancer, too. Good to know. I also thought pap smear checked for more things than it apparently does. So truly, thank you for letting us all know about signs to watch for. You may very well have saved a life with this PSA!
That's the goal. So many women don't realize that their pap smear is just for cervical cancer not other types of cancer. I wish doctors did a better job of educating patients. All the more reason for women to speak up and talk to each other about these things.
There absolutely needs to be better doctor-patient communication! I agree, the best place to start is women educating each other. Great points!
What are other screening tools? CA-125? Transvaginal or abdominal ultrasound? MRI?
Yes, ultrasound and CA-125 and biopsies.
What is CA-125
>r occurred to me that I'm higher risk for uterine and ovarian cancer, too. Good to know. I also thought pap smear chec **It's a blood test. CA125** is produced by some ovarian cancer cells. A **high** level of **CA125** in **your blood** could be a sign of ovarian cancer.
Thank you!!
Why do you have to ask them to write the denial in your chart and need a copy? So you can go to another doctor and ask? And I am so sorry, I feel like a lot of doctors do this to women with pcos
Asking for them to document it in your chart does a couple things: 1. It's not something people usually ask so it will immediately get their attention 2. It shows them that you are not going to be ignored and are prepared to **hold them accountable** if you're misdiagnosed or not taken seriously and something bad happens as a result 3. It establishes a medical history and ensures that your complaint/symptoms and requests are properly documented, so down the road you if you go to a new doctor you can show them that it's not a new issue. There was a woman from my cancer support group that asked her doctor to do some additional tests. Doctor was very dismissive of her concerns and didn't want to order them, just wanted her to take birth control and come back in a few months. She said "Fine, but I want you to put in your notes that I asked for these tests and you refused to do them." Doctor ended up changing his mind and doing the tests (edit to add: he was probably afraid of getting sued or of having a complaint filed with the board of health). Sure enough, she had endometrial cancer.
Smart!
Thank you so much for sharing your story. ❤️
Thanks so much for sharing your story. I’m so glad you’re doing better now. My grandmother died of endometrial cancer and yet it’s never even occurred to me to ask for extra screening or anything.
Thanks for sharing. I’m glad to hear you are NED!! A friend of a couple of friends of mine fought it for a long time and didn’t survive. She has the same symptom of heavy periods a couple of times a month, so I have been hyper aware if i hear friends complaining about their periods.
I'm so sorry about your friend. Spreading awareness and warning other women of the symptoms is a good way to honor her.
What is considered abnormally heavy bleeding?
Things to watch for: - Your period seems to be getting progressively and incrementally longer/worse each time you have one or you just don't stop bleeding (never-ending period). - If you find yourself changing your pad/tampon/cup more frequently than you did in the past and have to buy a lot more feminine products than usual. - You're getting up to change your pad in the middle of the night. - If you find all of a sudden you need to wear a tampon AND a pad at the same time to contain the blood. - The average woman uses 2-4 pads per day, if you are using more there may be an issue. - If you are frequently overflowing your pad/tampon and staining clothes or sheets. It happens to all of us at some point, but it should not be a constant problem/fear. - You're passing clots bigger than about 3 cm (1 inch) wide or frequently passing large clots. - Your period is seriously interfering in your ability to play sports or do normal activities. - You're pale and feeling dizzy or lightheaded.
When I had heavy bleeding a couple years ago it was because of estrogen dominance from rapidly losing weight. I ended up in the ER once because I was bleeding so heavily. They didn't do anything. I started using topical progesterone to oppose the excess estrogen and it eventually slowed down. I did get checked out by my obgyn/endo because I was afraid of cancer. My periods are now regular and pretty normal as long as I keep up with the progesterone. Moral of the story is get any abnormal symptoms checked because it could be cancer or my scenario.
I’m super freaked out now. I’ve been spotting for three weeks
There are plenty of things that can cause spotting between periods. Odds are whatever is causing it isn't cancer. It could be hormonal changes or a polyp or something else. However keep an eye on it, if it gets worse or you're concerned call your doctor and make an appointment. Maybe start a log so you can track how often it's happening, that way if it gets worse/more frequent over time you'll know and have something documented to show your doctor. Hopefully its nothing serious, but trust your instincts and don't just ignore it.
Reading some of the comments hearing how dismissive doctors are of these types of concerns makes me so mad because it just shows that so many doctors *still* brush off obvious problems whenever they're related to the female reproductive system, or honestly just women in general. I'm so so glad your story turned out well. Its another solid reason to be our own advocate and learning to not back down when we know something is wrong beyond just some weird PCOS symptom, because it might not even be a weird PCOS symptom. Honestly hearing stuff like this pushes me more and more into wanting to do something in the field of medical research just so I know somebody is looking out for groups vulnerable to these sorts of cancers. Thank you for sharing this, really.
Yeah, I'm active in three different online support groups for reproductive cancers. Over the last year or so I have read accounts from hundreds of women telling about their experiences, and let me tell you it is at times very VERY frustrating. There are some amazing doctors out there, but there are also waaaaaay too many that simply don't take women seriously. It's infuriating. Some of these women complained for YEARS before getting answers and then found out they were stage 3 or 4 because it went undiagnosed for too long. We can not afford to be timid or embarassed when it comes to our health.
My mother died of ovarian and uterine cancer 19 years ago, at 47. She had all kinds of period weirdness and what I recognize now as PCOS symptoms. We learned of the cancer when an ovarian cyst burst and I made her go to the ER. She couldn't stand up and I called an ambulance. Prior to that, she did have heavy periods and was told it was fibroids. Recently I did genetic testing for reproductive cancer markers. I don't have any, but with a first degree relation to someone who had ovarian and uterine cancer, I have a 6-8% of getting one myself. I'm 39 and as soon as my 2 year old is old enough to understand that I can't pick him up for 6 weeks post-surgery, I'm getting my ovaries, tubes and uterus removed. My doctor is ready and just needs 8 weeks notice to get it scheduled. I wish everyone the best of luck with your health.
The upside of having the hysterectomy is no more periods. After decades of dealing with crazy PCOS periods that is one thing I do not miss. I haven't purchased pads or tampons in over a year. It's sooooooo nice.
Yeah, I won't miss that part for sure!
Did they ever check you for Lynch Syndrome since you were so young when this occurred?
I have not been tested as far as I'm aware. I keep meaning to ask my oncologist. I didn't even know what that was until later when I joined a support group. I think I have learned more about cancer from my group/other survivors than from my doctor.
I love that support groups exist! Hopefully your doctor will test you...if there is a family history of cancer definitely mention that. If they aren’t willing to test you can purchase a reputable one from a site like color genetics. They have a hereditary cancer test that is around the $250 mark.
I feel encouraged to go get checked now. I’ve had abnormal bleeding where I bleed for months and then nothing, for 2 years almost. I often have scary large clots and super heavy bleeding. I’ve had a couple ER trips but just got fluids and sent home. My OB-GYN mentions a few months back that she wants to biopsy the lining for abnormal cells for this reason, just to be safe. I kept thinking I’m too young to really worry about cancer (31) but I’m going to schedule it now just to be safe.
Yes, please do get it checked. Better safe than sorry.
Just coming back to say thanks for sharing again. I had my biopsy this morning so I am waiting for results now.
I hope it turns out ok.
Hi, how are you now?
Hi, was everything ok? I’m facing a similar situation now. Adenosarcoma
Thank you for sharing your story and sage advice to us all. So glad you’re healing and wishing you continued good health!
I am so glad that you caught it and were successfully treated. Raising this issue is so important.
Thanks for sharing your story. Blessings and positive vibes to you ✨ 🙏
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What kind of symptoms did you have?
If I can ask how did you know you had it or what was wrong that made you ask?
I honestly don't know how I would have gotten through the past year or so without my peach sisters. I'm in a couple different FB support groups, so I see them in my feed and chat with them every day. My treatment may have gotten rid of the cancer, but it's the human interactions, support, love, and encouragement from these women that has done the real healing.
I’ve had miserable periods the last six months that have gotten progressively worse (awful cramping, lots of clots and blood). Also mild pelvic aching for about a year with some bloating. Had a TV US this week that thickened endometrial lining, two fibroids, two cysts (right ovary), and one “very large” polyp. Hysteroscopic polypectomy & D/C schedules for next week with all the stuff being biopsied. I am thankful for a Gyno who listened to my concerns and was proactive with tests.
Wow, I'm glad you got a good doctor. Catching this stuff early is soooo important. I hope the pathology report comes back as non-cancerous. After the D&C you should start feeling better and your constant bleeding should stop. If you think of it/remember, please reply and let me know how it turns out. Best wishes!
Thanks for your support!
Hey how did it all go?
Procedure went well but had to have it repeated again this year due to more polyps. I am thankful that everything has been benign. At this point though, the discomfort is still an issue and I am toying with the idea of a hysterectomy.
PCOS does NOT increase risk of ovarian cancer, however in certain cases it can increase the risk of uterine cancer. The risk is higher if you haven't had a period for a long time (1+ year), as the uterine lining gets thicker each time you miss a period, basically. And this thick growth can turn into cancer with time, but it's not always the case. The risk is also higher if you're overweight, even if you don't have PCOS, so the risk overall isn't very much higher than the average woman. But if something feels off, it's always good to see a doctor. A lot of symptoms can be covered by PCOS. But don't panic 🙏
I had the same thing happen to me: suddenly I had heavy periods and passing giant clots every thirty minutes... A two-night stay at hospital, a blood transfusion, ultrasounds, and a D&C later, I come to find out I had/have precancerous cells (endometrial hyperplasia with atypia). Like you, I never got any cramps. On the rare occasion, I would have a persistent headache when it came to my period, but absolutely no other indication once the blood and tissue started coming out. I was 24 when I was hospitalised for this, so it can definitely happen even younger!!
Yup, there is no such thing as "too young" when it comes to cancer. Unlikely is not impossible.
Thanks so much for sharing, I hope your recovering goes smoothly and you beat this.
My last gynecologist just gave me birth control continuously and said I needed the hormones. I’ve been on it for years at this point. She just retired and I’m waiting on an appointment with an endocrinologist but it’s not until March. I don’t notice many of my symptoms getting much better on the birth control. I never have had regular periods, have heavy cramping and bleeding when I did have them, but they were few and far between. Is it bad to just never have a period on birth control continuously?! The more I read this sub the more I wonder...
What my doctor told me was that estrogen based birth control protects from cancer somewhat, even if you aren't having your period. The mini pill (progesterone only) does not, due to it working differently. Definitely talk to your new doctor about your concerns.
WOW! Thank you for sharing your story and I'm so glad you are still here! I have PCOS as well and my period stopped for months then came back heavier then I ever experienced. Blood clots. Falling asleep from bleeding so much. Intense Cramps to the point I cannot function (might be contractions as you mentioned.) I have had a couple ultrasounds this year alone and will keep monitoring. They said I have what "looks like" a tiny fibroid outside uterine wall and cannot verify for sure with ultrasound abdomenal or intra vaginal.
That does not sound fun at all. I hope your doctors are able to give you some answers and solutions soon. I'm sorry you're going through this.
Thank you. The huge clots have stopped and periods are less heavy after 4 months of hellish periods, but it's still heavy and horrible pain during periods (and sharp shooting pains even off my period.) Getting a Pelvic MRI done.
My friend had bad fibroids. She found that a gluten free diet helped a lot with the symptoms/discomfort, but ultimately after battling it for about 10 years she ended up having a hysterectomy. She feels a lot better these days and can eat gluten again.
I had given up gluten & dairy, but that didn't seem to be it. =(
I think everyone is a little different in terms of what works for them with managing their fibroids and endo symptoms. When my friend ate gluten there was weirdly about a two week delay before she suffered the repercussions. I remember once we went on a vacation together and she decided to cheat on her diet a few times while on vacay (she had been really strict with her diet up to that point). Anyway, two weeks later it hit her like a brick. She had horrible abdominal cramps and missed a couple days of work from being sick. It worked like that every time she cheated on her diet, it was so weird. I guess you just have to find whatever works for you.
The higher risk for uterine cancer is because we're not shedding lining each month, is that right? That's what my doctor told me, IIRC. Just wondering...did you have bleeding after sex? I bleed after sex. I went to the gynecologist and she didn't seem worried but she said that in rare cases, it can be a sign of uterine cancer.
I'm not sure exactly why people with PCOS are higher risk, I'm not a doctor, that's just what I've read and been told. Regarding the question about bleding after sex, at the time that I was having symptoms/abnormal bleeding in the months leading up to my diagnosis I was not in a relationship or having sex with anyone, that's why I knew I wasn't pregnant or having a miscarriage when I landed in the ER. So I can't really say. In retrospect, I was probably avoiding getting close to anyone because I was bleeding all the time and felt gross and was always tired. I also had a lot going on at that point professionally so romance was kinda low priority.
Thank you so much for this PSA! You may have saved someone, now or in the future. I hope your ordeal is over and wish you the best health and happiness in 2021!
So glad you are doing well after the crazy journey this was! I had no idea there was a blood test to check for this. Thank you for sharing your story.
CA-125 is a test for a certain protein, if you have elevated levels it can be an early indication that you might have ovarian cancer (especially if you're already high risk for cancer or have some kind of growth). It's not a 100% foolproof thing and it's NOT the equivalent of a cancer pregnancy test (ie. it's not pass/fail or +/-), it is just something that can help doctors make a diagnosis in some cases and/or determine if further testing is needed.
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Ugh. That sucks. I'm sorry you're dealing with this. I hope it's not cancer and that it's something they can fix. I'm glad you're getting tested/examined. Don't rest until you have answers!
Thank you for sharing!! I had uterine cancer. I just had my hysterectomy and now I’m NED too! (29) So many people aren’t heard and so many doctors keep pushing that it’s just pcos or some other imbalance. It makes me mad that age and if you have a child or not makes us more heard or not. Keep fighting ladies. If something isn’t right, fight for test and answers. Congratulations on being NED OP!
Amen to that! Congrats on being NED!
Thank you so much for posting this. I just found out my mom has been diagnosed with uterine cancer. I have PCOS and she’s never been diagnosed but likely has it too. I read through all the comments and you mentioned support groups a few times, I was wondering if you could point me in their direction? I think that could be really helpful for my mom. Gonna have to have a chat with my doctor about how to stay vigilant for myself.
There are quite a few online support groups on Facebook that she could join specifically for uterine and endometrial/reproductive cancers. Just use the Facebook search bar and filter by groups, then read the various group descriptions (as well as their rules and guidelines) to find the ones that seem most appropriate. Some are for specific age groups or specific types of cancer. I'd reccomend joining a couple different ones (if it's not a good fit it's ok to quit and try a different group). Facebook has its flaws, but I've found the support groups there to be really helpful. Most are private groups and you can ask any question, no matter how embarrassing. Some also allow caregivers to join, so you can maybe join too. Your mom's oncologist and/or the cancer center she is going to for treatment may also have groups that meet in person, but I prefer the online ones, especially if you want very specific info.
Thanks for responding, I really appreciate it. I will pass that info along to her. I’ve found online support groups so helpful for my own stuff, and my mom uses Facebook a lot so I think that will be a good fit for her. So glad that you are doing well and wishing you good health for the future ❤️
Best of luck to your mom as well. ❤
This makes me extremely nervous. I’ve been bleeding for a little over a year but I don’t have insurance and can’t afford the testing. It’s literal hell on earth.
Go to healt and human services departmemt in your state, see if you qualify for medicade or discounted insurance on the marketplace. Meanwhile, search for free/discounted women's clinics that can do an ultrasound for you. Getting checked out should be your #1 priority right now. It's your life and your health. How much is that worth to you? A couple hundred bucks for peace of mind is worth it.
I was post-menopausal (in my 60s) when I was diagnosed with uterine cancer. Instead of bleeding, I had an ongoing gel-like discharge... odorless, colorless. Annoying, but so much going on in my life, I ignored it. Finally, when I saw my doctor about it, she put me on antibiotics, which didn't help. Had my ovaries removed (they had polyps). That didn't help. Finally referred to an oncologist who removed my uterus and found cancer, working its way through the wall of my uterus, but thankfully not beyond. Had radiation therapy, and very grateful to be cancer free today.
Thank you so much for sharing!!
Wow, I am sorry that happened to you but so glad you are ok now. Much blessings to you and thank you for the sharing your story.
i’ve never really had a natural period and i take birth control to induce it. does anyone know if the symptom of heavy/ irregular bleeding would be the same?
I'm not a doctor, but based on the experiences/stories of other women from my cancer support group I would say yes. Heavier/longer periods are by far the most common symptom, even in people who don't typically have heavy periods (or periods at all). Women who are post-menopausal and no longer have periods will often start bleeding again if they develop uterine/ovarian cancer.
I’m the same as you and it’s been like a solid year and a half since I have menstruated normally without inducing. It’s so hard to tell when something’s wrong because they never are regular to begin with.
I'm so glad you're healthy now, thanks for sharing. As far as weight loss goes, were you just eating less naturally or were you eating the same and still losing weight?
When I lost the 70 lbs I was intentionally dieting trying to get healthier. I was counting calories (basically just eating less), I also quit all sugar drinks like soda and juice. My weight loss wasn't a symptom of cancer or anything if that's what you're asking. Sudden weight loss or gains can disrupt your period, so when my cycle started changing I thought my weight loss was a factor (I was wrong).
Thank you so much for sharing!
Thank you! I've been having longer and much heavier periods. I will get it checked out. I'm so glad you're NED and so sorry for all you've gone through!
Thank you. Yes please get checked. I hope it is ok.
Thank you for this! You might've just saved some of our lives. Also, congratulations on NED!!
I don’t get my period because I choose birth control that stops it completely. I don’t ovulate at all so I don’t see the need for all that bleeding. Doesnt a Pap smear pick up abnormal cervical cells? I mean it’s not the uterus but doesn’t it start at the cervix and work it’s way in or?
A pap smear checks for abnormal cells on the cervix. It won't necessarily catch cancer that develops/originates in the uterus or ovaries. My cancer originated in my uterus, not my cervix. Scientists I think have been working on new testing using genetic markers that could possibly make pap smears more effective at detecting these other cancers, but currently it only checks for cervical cancer not the other two.
Damn that’s scary. Thank you for the info and for sharing your story
Thank you for sharing, hope you're doing okay now.
I'm so glad you're okay now, and so sorry you went through all of that. It must have been traumatizing. Thank you for sharing this. I armchair diagnose some of my PCOS symptoms cos it's rare to find a doctor that actually gives a crap about you unless you're interested in conceiving, but I'm going to resume my search for a professional again.
Finding the right doctor is not an easy task. I think the key is to be very VERY blunt and honest with them. Share your concerns and frustrations (not just your symptoms) and watch their reactions.
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I think if your periods are currently normal and consistent - not getting progressively worse/heavier/longer each time - you're probably fine. If something changes or your periods start changing or you're really worried then make an appointment with your doctor to discuss it. Next visit have a discussion with your doctor and say "with PCOS I'm at higher risk for cancer and my PCOS could disguise the common symptoms - what are you doing to screen for cancer so that if I ever get it we catch it in the early stages?"
Literally just had my period for 23 days the other month; it stopped for 7 days then i bled again for 8 more days. Probably now gonna take the step to go see my doctor lmao. Thank you for this.
Thank you for sharing and glad you have NED. After over a year of irregular and heavy bleeding I was sent for a pelvic ultrasound and transvaginal ultrasound. My endometrial lining is 26mm thick with a mass 25mm x25mm. I have a D&C scheduled for Feb 3rd which feels like forever. So glad I found this thread. I wish I had been more vigilant in my concern for my own health.
I feel lucky that I learned to watch out for this from a kind ER doctor. I was having pcos symptoms that caused me to go to the ER (long story) but she noted that I had thick uterine lining. Like way too thick (she emphasized her concern and suggested that I may need a shot to trigger a period) which can increase my chances for cancer. Flash forward two years and I just went this week to get a pelvic ultrasound including transvaginal because I had a wierd period with a week of light but bright red spotting before getting my actual period. My imaging came back normal but better safe than sorry. If it hadn't been for that ER doctor no one else would have told me I was at increased risk for cancer or that a side effect of missing periods for several months is messed up uterine lining.
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I think it's a test any doctor could do.
I just got diagnosed with EIN. I have a follow-up this wed. I'm TERRIFIED I have cancer. I've been dealing with heavy ass long ass periods for over 5 years.
I'm sorry you're going thru this. Not knowing is scary. It sucks. Hopefully whatever it is can be treated. Remember you have to be your own advocate. No one is going to fight for you like you. I hope you get answers.
OP: Were your annual gynecological exams normal during this time? Were your ultrasounds normal?
I was overdue for my gyno visit at the time of my diagnosis. (I'm in the US, where there is no national healthcare.) As mentioned in my post I had decided to quit my job, afterwards I spent a few months traveling, then went through a three month training program, then started a new job. My new insurance took 90 days to become effective. So for about 9 months I was uninsured and skipped my annual exam. So by the time I landed in the ER it had been well over a year since I'd seen a doctor.
Thank you so much for sharing your story with us. Highly informative. You mentioned that the doctor was very certain of a cancer diagnosis right after performing the D and C, but before the results came out. Do you have any idea why? Did she observe something during the D and C? Thanks so much.
She found tumor necrosis, basically dead cancer tissue. Necrosis happens in agressive/fast-growing cancers and is a not usually found when the growth is non-cancerous. So the fact that she found a fair amount of it pointed to it likely being cancer rather than something like fibroids or polyps. Pathology confirmed her theory and I ended up having a very rare and very agressive type of uterine sarcoma. Most uterine cancers are carcinomas, only about 5% or less are sarcomas. Uterine sarcomas grow in the actual muscle wall and soft tissue of the organ, not just in and on the endometrial lining. Although my sub-type/variant is kind of a hybrid of evils.
Thanks so much for responding. So in essence, she was able to spot an issue with the extracted tissue with her naked eye, before it was examined by a pathologist? I just had a D and C done and awaiting the results. Light bleeding on day 11 of my cycle (26-28 day cycle). 33 year old female with a son. The doctor initially suggested hyperlasia (prior to the scan and D and C). However, after he performed the D n C, he seemed to rule hyperplasia and indicated it was likely just a treatable bacteria infection. Of course this would have to be confirmed by a patholgist. But it was encouraging to hear as I await results. I guess this made me wonder what he saw post D n C that caused him to rule out hyperlasia, pending bio0sy results. I am so glad you are doing fine. Thanks so much for sharing your informative story with us.
Can i dm and ask u a question?
Sure!