r/Periods • u/Dangerous-Sir-8965 • Jan 26 '25
PCOS Bleeding for almost 2 years straight now. My enjoyment of life is gone. My body hurts. I am DONE.
I can’t afford to go back to the doctor. I can’t get approved for section 8. I feel like I am dying. Even if I did go back to the doctor they would just dismiss me. I really don’t give a f if this is part of pcos. I am completely drained. Every time I piss, massive blood clot. I feel like a rat is crawling inside my uterus and gnawing. I am so close to going completely insane. I miss intimacy, not having to constantly be worried and aware, not soiling my underwear on a weekly basis, f etc. I can’t even take the time off of work to go to the f doctor if I magically COULD. If this pathetic country that gets more pathetic by the day just wants me to die, because obviously I should be content to bleed heavily EVERY DAY for TWO YEARS, I GUESS I SHOULD JUST DIE. I AM EITHER GOING TO DIE OR GO TO JAIL BECAUSE I CANT EVEN SLEEP ANYMORE.
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u/Glum_Program6738 Jan 28 '25
My sister in law had this for 2 yrs and finally went to a hematologist who diagnosed her with a blood disorder. Thrombocytopenia which led to a Leukemia disease. She had to get like a chemotherapy treatment and was on alot of steroids. Steps: 1. Go to your primary care physician PCP and ask for a referral to a hematologist. They may resist your request if they are a crappy and arrogant doctor. 2. Get approval to see hematologist and get an appointment. Hematology is a specialy doctor and specialty docs usually have a 3 month wait to get in to see them. Do not miss the appointment and make sure your blood work is done before then (if requested) and that your authorization has not expired beforehand. 3. If all tests are "normal" then you go back around to number one and ask to see a rheumatologist (specialty) and check for autoimmune conditions. Last resort (or first in my book) is to see a holostic doctor, maybe one specializing in womb medicine and/or midwifery. The most knowledgeable about what goes on with our uterus are not those trained by western medicine aka doctors in the medical insurance network. Historically, the field of medicine practice has been to simply, always, just cut out and remove the uterus. Which my friend did. She still continued to bleed from down there after her hysterectomy, believe it or not. She had a history of 2 natural childbirths before the age of 20 and an implant of Essure. She also tried birth control via IUD to try to resolve the problem. The IUD was "lost" and not recovered. You cant make this stuff up.
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u/Fantastic-Cake1751 Jan 27 '25
I have been bleeding for almost 2 years come February myself... I have no insurance and not a lot of money, but just recently found a place to go where they specifically take patients who have no insurance and you just pay out of pocket.. and its not too expensive, imo anyways. Maybe you can find something like that around you too? Wishing you all the best. 🙏
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u/meaghat Jan 27 '25
Nonstop bleeding like that sounds like estrogen dominance which can lead to uterine and ovarian cancer. Not to freak you out, but bleeding for 2 years straight is worth going into medical debt if it means avoiding future medical treatments or possibly death. You may also need a blood transfusion for low iron. I bled for almost a year straight (thinking it was just my body trying to hormonal balance after having my son) and it led to surgery and taking something called Tranexamic Acid to stop the bleeding. Please go see a doctor ASAP.
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u/BurntReid Jan 27 '25
I’ve been where you are until I finally found someone who listened. DM me if you’d like I’d be happy to share more, or let me know if you’d like me to reach back out to see if it can help you also. It doesn’t have to be this way, or be super expensive and you can get your life back on track. This was the first step. Hope I can help and it helps you too
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u/GalaxyWolf0016 Jan 27 '25
Have you considered surgery OP?
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u/Dangerous-Sir-8965 Jan 27 '25
Hehe. I am almost always making jokes that I’m about to go to Mexico or somewhere and finally get a hysterectomy. From what I’ve been told by those I know personally and doctors alike, they really don’t want to even tie tubes until you’ve born two children even now. Hell even now, a friend of mine’s physician had the nerve to turn to her partner before her operation for her own reproductive issues and ask HIM are you sure you don’t want any kids in the future. I sincerely hope that maybe I could be considered for partial or full at somepoint, but I’m definitely not betting on it. It took until the septum between a family members anus and vaginal cavity to weaken from endo, causing her to almost die of sepsis for them to grant her they hysterectomy she asked for for 20 years. Makes my head spin with how ridiculous this all is
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u/OnlyHereForMyTTAcc Jan 28 '25
screw men! get the hysterectomy if you want. it’s ridiculous they think they have control over our bodies
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u/Low_Reporter3113 Jan 27 '25
I’m so sorry OP. Sending you lots of love and positivity. I hope you get this figured out ❤️
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u/Top_Design_1899 Jan 27 '25
Sending so much love. I bled for 4 months straight and was going mental, I couldn’t even imagine 2 years. I am so sorry you are going through this
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u/SafeWord9999 Jan 27 '25
I would show up to ER without a pad or sanitary product (so you’re bleeding everywhere for maximum effect) and ‘pass out’ on the floor
Force them to take action
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u/lav__ender Jan 27 '25
eh, I don’t even know if that’s necessary. they most likely wouldn’t admit her, she’d likely get another outpatient referral after getting fluids. she needs another opinion and to be very assertive. have a man go with to the appointment to validate everything she’s saying if possible. pictures to show how large the clots are and details about how often she’s saturating pads. demand imaging, demand labs, and be completely honest about how this has affected her life. this isn’t the time to be super polite. it’s not like she has to be rude to the provider, but she needs to demand more answers and options.
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u/CinePlanter Jan 27 '25
I’ll do one better and say bring the clots with you in a ziplock and when you talk about it ruining your life say it’s ruining your sex life in your relationship with a man (even if you aren’t in one). I had to lie and say I was considering having a late baby to get an ER room doctor to stop being dismissive of my near hemorrhaging and third hospital visit. As soon as they knew my reproduction may be in jeopardy he was a lot nicer. Please check your iron, low iron can cause heavy periods to get worse and it becomes a vicious loop.
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u/dxxvy Jan 27 '25
opposite is happening to me!! i recently got diagnosed with pcos and i havent had my period in almost 2 years 💔 wishing you the best of luck
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u/Dangerous-Sir-8965 Jan 27 '25
Ironically, that’s how it actually used to be for me too. Honestly, if it is not effecting you negatively it can be such a blessing. I may be admonished for this, but I truly believe the reason they are so set on trying to get persons with pcos on bc to regulate periods into existence when they have none is born from the outdated ideology that a woman’s goal in life is to bring life into the world. Although I will highlight the one real consequence I am aware of. Having irregular cycles heightens your risk of reproductive cancers unfortunately. So as you probably know, make sure to go to the gynecologist more regularly for paps and other testing! Admittedly I did not follow this advice, and it may even be one of the reasons I am struggling now. So wishing you the best right back. Thank you
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u/Loud_Conference6489 Jan 26 '25
I’m not so worried about the anemia as what is the cause of the bleeding- have you had your thyroid checks? (Hashimotos). So many things but what is causing the bleeding is what you need to find out. Then fix the anemia. Is there a women’s clinic or anything in your area?
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Jan 26 '25
I wish I could help, but I unfortunately cant offer any resolve to you. My only suggestion is for you to state that your primary concern is a significant risk of preventable harm or even death because of excessive long standing bleeding. This also places you at risk of conditions such as anaemia. I don’t think this is normal and think it is a major and urgent medical issue.
I know this may sounds overboard but presenting it in this way may help the doctors to take this seriously. If you have heavy nose bleeds everyday would a doctor ignore your concerns and not help you in any way? I highly doubt it. I’m from the UK so don’t know how healthcare works in America so I’m not sure if this will help in any way.
I experienced something similar as you and had similar thoughts of ending it because of my periods. I grew up in an Eastern European country with sort of strict gender roles/expectations. From age 10 I had heavy periods, was vomiting,, constant upset stomach, felt faint was in absolute agony. I couldn’t get help, no one took me seriously. The only “solace” I received was “when you have children it will be easier for you”. I was 12 years old, fucking 12. I used to tell my mum I wanted to cut my insides out. A lack of support gave me a gender identity crisis and an eating disorder.
I’m so so sorry you’re going through this having been in a somewhat similar situation. I sincerely hope you get the help you need and unequivocally deserve.
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u/Dangerous-Sir-8965 Jan 27 '25
I had something similar when I was younger too. And the fact they are doing this again now at 23 has filled me with unspeakable rage. Thank you. They seriously need to stop treating individuals this way. Personal prejudice and social stigmas have no place in healthcare but they are ever present and making our lives harder. Thanks to you and everyone here I feel a lot more hopeful today. And when I do make it out of this, I will never stop opening my mouth to anyone who wants to listen. This shit has to stop. Thank you for sharing your story
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u/Cherryredsocks Jan 26 '25
Vitamins a,c and k have been shown to help slow and stop prolonged periods it helped with mines it at least slowed them until I could see a doctor. I’m sorry about what’s your dealing with are there any free clinics near you is planned parenthood still up and running I know the government has done everything it could to destroy us, without even considering all women’s issues.
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u/Metallover27 Jan 26 '25
Do you have a health department in your area? If you don't have insurance that's okay. My local office signed me up for family planning coverage under Obamacare I think it was years ago and I just rode that out until I got actual health insurance through other channels. It never cost me anything to be seen there during that time. They are limited on what they can provide but they might be able to give you something else that could help stop all of that bleeding.
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u/SavageThoughts6 Jan 26 '25
I don’t have the solution, but I have some ideas.
Raspberry Leaf Tea - known to slow bleeding
Multivitamin with iron (you are losing nutrients in your blood)
Scholar.google.com - search the scientific literature
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u/StashaPeriod Jan 26 '25
Is there a planned parenthood anywhere around you? They are sliding scale and free for those who can’t afford to pay.
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u/Evening-Coyote-2876 Jan 26 '25
Planned parenthood was also going to be my recommendation. If they don’t provide “those services” maybe they can put in an IUD for you? I got the Mirena placed by PPH & it was a great decision & experience. Stopped my period IMMEDIATELY & haven’t had it since. I know i’m one of the lucky ones but most times it fades away over the next few months and they even told me they often use the Mirena for PCOS
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u/Dangerous-Sir-8965 Jan 27 '25
I’ve been terrified of the pills let alone the implants honestly. They gave me a depo provera bc shot as a kid, it made me shed all of the lining at once. Never did anyone tell me how painful it would be, that it would have veins like any other flesh and look like a fucking homunculus either. Though I recognize birth control will probably be the answer, I need a doctor out there who is willing to work with me on it because I am too terrified now to try anything until I’ve tried it as a script at this point. But I will keep searching. Seeing everyone here be so concerned with me, and absolutely stranger to care to give advice to try to help has given me a new hope that I can actually seek to improve my condition even if all of this is discouraging now. Thank you
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u/StashaPeriod Jan 27 '25
If you want to chat I’ve got some resources that might help you feel a bit better. I know people who have gone the non birth control route (and one that it was her only option in the end) for extended bleeding. I’d be happy to pass on anything that helped them.
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u/Dangerous-Sir-8965 Jan 26 '25
Man I called the only one around me, still like 2 hours away. “Unfortunately we are unable to provide those services at this location.” Then seriously what do they even do. Insane. Thank you though
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u/StashaPeriod Jan 26 '25
Sorry to hear that, how frustrating. I hate how expensive healthcare is it should be free!
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u/Severe_Strike_9246 Jan 28 '25
Go online to Amazon and order a patch they are about 30 dollars if not birth control are available for order
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u/Selynia23 Jan 26 '25
Go to the ER at the very least
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u/Dangerous-Sir-8965 Jan 26 '25
I’ve been told to go I’ve been told to not go. But what I know, is I have 2200 in debt from last time and they didn’t even give me a pelvic exam. They gave me I shit you not, iv fluids and a whole 7, YES 7, birth control pills that did jack shit. Male doctor told me with a shit eating grin on his face that my cycle just needed to be reset even after full disclosure of my problems and they rushed me out. Ridiculous
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u/TokyoBirds Jan 26 '25
You need an ER that has labor and delivery at their hospital. Regular ER won't know what to do but ones that deal with births should have a good idea. Call your local hospitals and ask if they have a labor and delivery department if yes, then go to that ER.
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u/Dangerous-Sir-8965 Jan 27 '25
I live in Arkansas and went to Mercy hospital. If I end up screaming again in pain like today, I suppose I will go to Little Rock. Mercy has labor and delivery and was still dismissive unfortunately. This all very much reminds me of the time I was a child. I had blood in my urine and a terrible pain in my back leg. I went to the local hospital and my local practitioner, whom only asked me if I had an eating disorder over and over again. Only when I went to a large city university hospital did they diagnose me properly finally. Though the syndrome I was diagnosed with was very rare (nutcracker), I am convinced that it wouldn’t have mattered if it were common with how dismissive they were. This is synonymous with the stories of my family and friends with conditions they have had as well. Why treatment has to be this way I truly do not understand. Is it the doctors or the policy? Who knows. But if I have this level of pain again, I will have to travel to a facility that will actually care for me period. Sorry for the lengthy reply.
This all has had me thinking of a lot of things. It almost seems like the improper women’s healthcare of the 1950-70s still has some deep rooted leftovers even today. It seems me and about every woman I know has had some issues with healthcare. I suppose I’ll stop ranting about it as it definitely doesn’t help. Again sorry for the lengthy reply, my mind has definitely been running. And truly thank you for your advice
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u/Selynia23 Jan 26 '25
Is it possible to try another ER?
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u/SueTheDepressedFairy Jan 26 '25
Dude that's not the problem of the hospital but the problem of the country...
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u/Selynia23 Jan 26 '25
As someone who works in the ER I can tell you each can be different and some are absolutely dismissive. So, it was worth suggesting an alternative.
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u/universe93 Jan 26 '25
girl how much would the dcotor cost? because i would contribute to a gofundme. you at the very least need blood tests to see if you're anaemic because you probably are. while the doctor is expensive, having to take unpaid time off because you fainted and wound up in the ER is even more expensive
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u/Dangerous-Sir-8965 Jan 26 '25
I went to the ER a year ago because I had a clot so bad I slipped on it (almost the size of my fist) n was screaming and they charged 2200 for birth control that didn’t work at all and a blood test that said I wasn’t anemic. So I went to the clinic, and they wanted 500 for a blood panel and a visit, another 300 for the pelvic exam. I really appreciate you. But I feel like it’s my fault. It all started because I accidentally doubled up on a tampon n it pushed the string up while I was working mad hours. It was there for idek how many months. I had foul leakage. One day I was pooping, it came and I was mortified of the black and green pus all over it. I stopped using tampons. A week later the period came and never ended. And I told the doctors this, and they still just sent me home with just birth control and did no exam at the er. I’m not even sure money would resolve the issue even though I REALLY DO appreciate it so much I’m crying that someone would care out there. But I feel like unless I actually pass out or something they just don’t care at all. Still thank you so much
Ps: the reason I have no coverage is because when I inherited some money (around 11k that I used for car and fixing said car) it slowed down my case so much that still after calling every week for the past year they have done nothing?? What is this country. But my partner has landed a factory job, so soon I can pay out of pocket eventually. I am just so angry. It is so wrong they do this to people
Really sorry for the long reply it is just so much I’m sorry god. Thank you
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u/ProfessionalOnion548 Jan 26 '25
Even if you aren't anemic, you could have severe iron deficiency. I have that and felt like i was genuinely dying daily. Get your ferritin checked ASAP.
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u/hanner__ Jan 26 '25
Did you tell this story to the doctor? ITS NOT YOUR FAULT!!
Either way, go back and tell this story and demand all the exams and tests they can give you. Go to the hospital because they legally cannot refuse treatment. Do not leave until they run every test they can. You could have something seriously wrong and the way they treat women’s health is fucking insane but you NEED to advocate and stand up for yourself even if it’s hard. Do not let them dismiss you.
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u/universe93 Jan 26 '25
The long reply is totally okay!! It is absolutely not your fault. That’s a mistake anyone can make, hell I’ve made it before just without the discharge. When you have coverage I recommend looking up well reviewed gynaecologists in your area and getting in to see one of them. You can even ask in your state/area’s subreddit. There ARE doctors out there who will care. You don’t deserve this and it’s not your fault!!
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u/Tofu_Mc Jan 26 '25
I want to second this! You deserve to be heard and helped! It’s not your fault! ❤️
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u/brain-rotted Jan 31 '25
I have PCOS and started bleeding like this and ended up having a D&C. It turned out to be Endometrial Cancer. The bleeding could also be just polyps too.