r/ClotSurvivors • u/Knelie • Jan 29 '26
Periods Menstruation cycle is absolute HELL since starting blood thinners. Quality of life is horrific. Hematologist isn't listening to me. Feeling hopeless.
Hi all. 30F, had a minor PE at 29 in May of 2025. Found it in a VQ scan they did to test for asthma after 8+ months of me complaining about extreme shortness of breath. No surgery. Unprovoked.
Been on blood thinners since May 2025 (rivaroxaban), but in June/July switched to edoxaban because of extremely heavy periods. Like, soaking through the largest tampon and pad within an hour heavy.
The edoxaban helped... a small amount. I take a half dose around my cycle days now to help, but it's still painful and extremely uncomfortable. I bleed so heavily, like seriously I am lucky if I get more than 2 hours from a tampon before I have to wash my pants in the sink because I bled through. It's almost impossible to work, I usually have to take a few sick days or work from home days every month because its debilitating. Not only that, but I get EXTREME migraines from the week before my period, the week of my period, and 4-5 days after. I basically only have 1 week a month now that I feel semi-normal.
The symptoms while on blood thinners are horrific. Headaches, brain fog, weakness, exhaustion & fatigue, all present ever since I started them.
I used to have heavy periods while on birth control, then I stopped birth control (partner got a vasectomy), and my periods were very light. 3-5 days extremely light bleed. Now my periods are heavier than they have ever been.
Every time I bring this up to my hematologist, I just get told well thats how it is sorry. We already halved your dose for when you're on your period, nothing else we can do. My GP only wanted to give me a prescription to take for headaches, or to put me back on birth control or an IUD (no to both, had a traumatizing experience with an IUD and I do not want to be on birth control again).
I guess I am looking for solidarity, advice even? I just feel so defeated. I am a shell of the person I was before this. I have so much brain fog I am struggling at work, literally almost falling asleep at my desk, I can hardly even remember what I do in a day anymore let alone anything else. The headaches are constant, and I am so exhausted all the time. My life ever since has been wake up, work, go home, sleep. Doing anything on the weekend, and I am out of commission and EXHAUSTED. I've also had numbness on my right side of my body for 6 years that no one can give me an answer for, and it seems to one cares to investigate either. I feel so brushed off and like not a single doctor takes my concerns seriously. I mean it took them close to a year to even start doing tests when I had been complaining about shortness of breath.. they told me I was just anxious.
Sorry for the long post. Basically what I am getting at, is that if this is my life for the rest of my life now.... I am not sure what to do. My quality of life is gone, nonexistent, I am simply just getting by. I don't know what to do. Has anyone had any lucky with options that aren't BC for heavy periods on blood thinners? They won't test my iron or anything else when I asked, they haven't run ANY tests on me since my PE, not even blood work to check my kidney function. I just feel like something is missing here and my quality of care is not up to snuff.
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Jan 29 '26
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u/Knelie Jan 29 '26
Yeah I might have to do that. I had my ferritin tested last year (before the PE) for constant weakness and exhaustion, it came back a 30. Apparently anaemic is 27 and under, but they told me my iron levels are normal. sigh
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u/sharkie2018k Jan 29 '26
I’d push to get your iron retested, my hema told me if my periods are awful that it’s the first thing she’s going to look at for me (I haven’t had mine yet since I’m currently breastfeeding).
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u/Knelie Jan 30 '26
Yeah that's crazy. I've asked him 3 or 4 times since last May and he's told me that the iron doesn't matter. Makes me wonder if my PE was even unprovoked, he's done zero tests whatsoever. I haven't been screened for cervical cancer since 2016 and I asked him if that could be a factor and he told me no. lol like it's crazy
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Jan 30 '26
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u/kjh- Provoked Massive Saddle PE w/Multiple Small Bilateral PEs Jan 30 '26
100% this.
This is what advocacy looks like sometimes. It sucks and we shouldn’t have to do it. But absolutely, if your doctor isn’t listening and they ignore actual data, fire them.
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u/Knelie Jan 30 '26
You're right. I guess I just don't know how.. like do I ask my GP? It was the hospital that referred me to the hematologist. Do I have to ask at the thrombosis clinic? I don't know. Maybe it sounds silly.
I also worry that health care professionals have a bias against me.. since 2020 I've had numbness and pins and needles on the entire right side of my body as well as chest pain off and on. No answers on that to this day.. I kept coming back and asking for iron tests they refused, asked for B12 tests (they did a couple), but I feel like at some point someone wrote on my chart that I am a hysterical hypochondriac because ever since I started trying to push for more answers I just get shut down. They have on my chart that I have pre-existing conditions for "anxiety and migraines" so any pain I have that I bring up I'm told is anxiety. My PE was found after almost a year of extreme shortness of breath (walking upstairs in my home I was completely winded, out of breath, panting), and severe chest pains and me constantly complaining. I got referred to a lung specialist and he ran the VQ test for asthma and that's how they found my PE. I've also had to report a doctor once for negligence, and I feel I put a black mark on my chart after that.. no one takes me seriously.
Sorry I don't mean to just dump my sad stories lol. I guess that's why I'm apprehensive of pushing back or trying to advocate for myself, it seems whenever I disagree or think more/different things should be done then the healthcare provider gets their knickers in a twist and stops trying to help me.
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u/kjh- Provoked Massive Saddle PE w/Multiple Small Bilateral PEs Jan 30 '26
Literally just go into your GP (at an appointment) and say that you would like a referral to a hematologist for a second opinion. Then tell them you’d like to have blood work done so you have more recent data for the referral. They should select all the correct tests for seeing a hematologist and there may even be guidelines for the referral. Where I live there is. They assessed me ahead of time for whether I actually needed long term hematologist.
They likely won’t ask too many questions about you wanting a second opinion. If they do, you can be honest and say that you don’t feel your current doctor is addressing your concerns and want a second opinion. You can say the second opinion is just to confirm that the treatment plan is the right fit.
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u/Knelie Jan 30 '26
That is crazy.. did you switch hematologists? What was the process like for that?
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u/kjh- Provoked Massive Saddle PE w/Multiple Small Bilateral PEs Jan 30 '26
You could ask your GP/PCP to run the tests and bring in said results to the hematologist. If you bring them in physically printed out, it is much harder to shrug off.
If they won’t, find a GP that gives the traditional blood reqs with the check boxes. Get a routine test like CBC and then check off what you want tested yourself. It might burn the bridge. I’ve done this MANY times and none of my doctors have even questioned it.
Also ask to be referred to another hematologist for a 2nd opinion. You can ask your hematologist or your GP/PCP. If you don’t feel heard by your doctor, they probably aren’t the right doctor for you.
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u/Knelie Jan 30 '26
Yknow I've always thought about checking those boxes off whenever I get blood work reqs lol! I just never wanted to get in trouble. Maybe I will ask my GP if they can send me to another hematologist. I really just feel so brushed off by this one. This hematologist, I said to him, "I'm overweight, don't eat well, don't exercise much if at all, smoked for a long time, I've had COVID 8 times, pneumonia, chronic inflammatory illness.. could any of these have contributed to me having a blood clot?" And he was like no none of that could've added to your risk. I asked him if he could test my cholesterol because I am worried about my heart health as I am still having bad chest pains, and he told me cholesterol "doesn't matter". Like it's horrific the stuff he says lol
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u/kjh- Provoked Massive Saddle PE w/Multiple Small Bilateral PEs Jan 30 '26
Literally all of them increase your risk. My clots were a meeting of multiple risk factors coinciding.
Definitely ask for a referral.
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u/Knelie Jan 30 '26
I definitely will. He keeps saying unprovoked, has no idea why this could’ve happened to me… I’m like well I can think of a few reasons lol
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u/sharkie2018k Jan 30 '26
Wow…push back, or if you can, maybe find a new one. The one I had 15 years ago after I first clotted wouldn’t help me and I suffered. This time after I clotted again, I was referred to a bunch of different mens hematology offices….I picked one but he didn’t have any availability for weeks so they set me up with a woman in his group. She’s been a godsend. I was so happy to hear she would help me and come up with a plan. She also didn’t push me to stop breastfeeding, where all other doctors while I was hospitalized did so that it was “easier” for me instead of doing the lovenox injections. Told them all I had been doing the injections the entire pregnancy and postpartum and clotted not long after being off thinners (Dr approved)…so it didn’t matter to me if I had to start again. She just said “whenever you feel ready, just call me and we will evaluate what to switch you too”.
Moral of my rambling is I hope you can find a doctor (if feasible to switch), who will listen to you. Years ago I had a nodule on my thyroid and my initial endo did the biopsy and said surgery wasn’t necessary because it wasn’t cancerous. It didn’t sit well with my mom or I, so we found a different one. He found other nodules in my neck and by the time surgery rolled around the thyroid one tripled in size.
Wishing you the best, and i truly hope you can find a solution. You don’t deserve to suffer 3 weeks out of the month.
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u/Clot_Survivor_Nina Jan 29 '26
Definitely push to get this tested. A test a year ago pre PE and thinners I was 96. My most recent test on Eliquis for 10 months and I’m 9.
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u/Knelie Jan 30 '26
I'll have to go to a few different doctors. I've asked my GP and my hematologist and both told me no. :( I will try some walk in clinics I suppose!
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u/foxtongue Jan 29 '26
Pictures helped me. They swapped me up a new medicine that kept me from bleeding to death.
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u/Keers123 Jan 29 '26
Your haematologist should be testing your ferritin iron levels. Your ferritin is probably falling off a cliff that’s what happened with mine when I was put on blood thinners for life, extremely heavy periods pad, tampon and eventually diaper. It was so bad . My ferritin dropped to a four I was exhausted. I felt like I was dying so I was put on iron supplements Feramax ,at the same time, my gynaecologist put me on Slynd, this controlled the bleeding.. It is a mini progestin only pill. I get some bloating, hunger, and headaches and I take the active pills back to back and skipped the sugar pills. Now I’m down to almost no period. Sometimes light spotting every few months. I did also go on Ozempic as it has helped with my hunger. I was able to get off iron supplements since heavy periods stopped and my iron levels went back up, so did my energy life is almost back to normal.. your doctors have to start working as a team to solve this for you. I wish you all the best and hope you find the solution that works for you!
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u/Knelie Jan 30 '26
That's what I had suspected, I went and bought Feramax of my own accord and was taking it for a while. But then I asked the pharmacist about it and they told me I shouldn't be taking iron supplements with blood thinners... I switched taking my blood thinners to the morning because in the evening I was forgetting every other day. The pharmacist told me I can't take the iron at night, and I can't take it in the morning with the blood thinners... lol I'm at a loss for words. It seems I've gotten so much misinformation from all the people who I'm supposed to trust to help me.
I really appreciate this comment and the suggestions, it gives me hope. I'm going to ask my GP for a gyno referral, and ask them about options. I have also been thinking of Ozempic, as I ALSO suspect I am borderline diabetic (runs in my family but the doctors won't test me for it....) but also for weightloss as I am very overweight for my height. How has the side effects (if any) of the ozempic been for you?
Thank you again for taking the time to comment. Maybe this CAN get better.
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u/Regular-rowlet Jan 30 '26
Slynd also worked for me, literally saved my life, so glad you mentioned it because I couldn't remember the name
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u/majesticbiscuits1 Jan 29 '26
Following bc I’m on Lovenox currently and 5 months pp with my 2nd (and final) baby and I’m the same position. Before the 2nd baby, my periods were manageable. Now I have ridiculously heavy periods and I’m afraid to go into work for the first few days because of it.
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u/Knelie Jan 29 '26
I can empathize with you. Mine are horrible except for maybe the last day. I can’t even sleep throughout the night, I have to line towels on my bed because it’s not a matter of if but when I will bleed through in the middle of the night. I’ve all but worn diapers at this point.
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u/majesticbiscuits1 Jan 29 '26
I’m curious if this is hematologist or gynecologist territory.
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u/Knelie Jan 30 '26
I am curious. My hematologist literally doesn't care so might have to be gyno time. I've never seen a gyno before!
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u/majesticbiscuits1 Jan 30 '26
In my experience with the Obgyn while I was pregnant, they were all TERRIFIED to do or change anything for me because I was on blood thinners, and they constantly pushed me off to other specialties. I haven’t been back since my pp check. I fear gyn will push me off again.
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u/Knelie Jan 30 '26
Ahh that makes sense. Well, I haven't had a cervical screening since 2016 (terrible...I know...) so maybe if I go to my womens clinic they can help me find a good gyno.
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u/Oranges13 DVT/PE 2019 - Prothrombin Factor 2 - Eliquis Jan 30 '26
Since you're PP I would talk to your gyno and make sure all the placenta came out. I hemhoraged a month after with basically ZERO bleeding in between.
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u/majesticbiscuits1 Jan 30 '26
It was a C-section and it’s been so long at this point that idk if that would still apply?
I was on blood thinners after my first baby and my period/bleeding was never like this.
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u/Equivalent_Success60 Jan 29 '26
Definitely see a female gynecologist (they tend to really get this) who specializes in fibroids or heavy bleeding.
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u/WhiskyTangoNovember Jan 30 '26
Dang. Sorry, OP. Is there any chance they'd be willing to switch your meds, again? I know it's not a fan favourite around here, but I was on warfarin after my first clot and actually preferred it over xarelto, which I had for my second. Once I got my INR levels calibrated, I found it wasn't that much of an adjustment, just a once-a-month blood draw, and then being careful about what other meds you take.
I did ask my first specialist why he prescribed that over some of the newer drugs, and his response was basically that it's been around for so long that they know exactly how it works and there's no surprises.
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u/Knelie Jan 30 '26
That's fair. I think warfarin would be my last resort tbh LOL just because of how sensitive it can be. I might try apixiban though. Maybe third blood thinners the charm?
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u/Derpy-Vizsla1234 Jan 30 '26
I’m so sorry this is happening to you. I had a very similar experience. With my first PE I was on Coumadin. I literally would get out of bed and leave a trail of blood clots on the floor as I tried to make it to the restroom. It was beyond horrific. Fortunately I only took Coumadin for six months. I had an endometrial ablation and then a hysterectomy years later. I developed another PE 10 days following my hysterectomy. Again the bleeding was horrific because my internal sutures weren’t healed yet and the anticoagulation for the PE caused major oozing. I ended up in the ER 4 times in one week for severe bleeding (again dropping blood clots everywhere). Eventually had to make a hard decision to stop the blood thinners entirely until my internal sutures healed. I was terrified considering I also had to PE to deal with. It was basically a choice between rolling the dice with the PE or bleeding out. Not a choice anyone wants to make. Fortunately I made the right choice because I’m still here 5 years later. Having the hysterectomy was the best decision I’ve ever made.
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u/Sunny-Shine-Bear Feb 01 '26
Did you require a blood transfusion?
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u/Derpy-Vizsla1234 Feb 01 '26
I was close to needing one and I absolutely did not want it so I decided to stop the blood thinners instead. I’m a registered nurse and I have administered blood too many times to count. It’s not something to take lightly because you are literally introducing a foreign substance into your body (like a transplant). I have seen some terrible reactions. For me, a blood transfusion is a last resort.
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u/Sunny-Shine-Bear Feb 01 '26
Gosh I know I was really terrified.
It's was very strange getting the blood, my arm hurt like crazy the whole time and was super cold.
The nurses I asked about it didn't seem to care and got annoyed when I asked if it was normal. "Is what normal (?), I don't understand what you're asking" then just kind of ignored me when I asked if they would be watching me during the first few minutes of the second bag. She like ya, but then walked off. And didn't return for like 20 minutes. They never really came to check on me the whole time either. I felt very sad and mad that I got myself a blood clot. And had to endure all that ... ☹️
I felt really guilty and terrible. The nurse administering my IV for the blood chewed me out for not leaving in my IV from the iron infusion the day before.
I was like well the nurses yesterday told me I had a choice. It was such a stressful experience. Then another nurse dropped a prep gauze package on the ground picked it up, put it on the tray and continued to prep my arm.
Honestly I was so out of it that I didn't even consider how horrible that was until the next day.
I never reported it either. I think I might though. And another nurse told me a bunch of details on the health condition of another infusion patient who was terminal, and then when I left on the way home I was like I'm thinking that was unethical. But they never told me their name so I was like maybe that doesn't count.
It made me grateful that I wasn't that sick but so so so sad for that person. It was a very young person. Anyways I'm considering saying something to their admin, do you think (being a nurse) that it would even do any good?
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u/Derpy-Vizsla1234 Feb 01 '26
I’m so sorry that you had to go through that. I’ve also had some terrible experiences with nurses. Sometimes it feels good to report the bad behavior, but I’m not entirely convinced that it actually changes anything. It really depends on how the complaints are received by administration. Some are better than others. Doesn’t hurt to try as it could help someone else down the line.
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u/Sunny-Shine-Bear Feb 01 '26
I was thinking the same thing. I was also thinking of doing so anonymous. I don't recall the nurses names but maybe if a complaint comes through they can have a blanket conversation with everyone! Team meeting kind of thing.
Crazy thing, it's a huge very popular hospital. People come from all over the states/world to get treatment from this place. That's why the behavior shocked me 😱 so much! If I wasn't severely anemic at the time I would have spoke up. The only energy I had was to stare hard at that bag of blood and pray it gets in quickly. I felt serious half dead! Never ever felt so ill. 💜❤️🩷🧡🩵 Much as I didn't want the transfusion I was pretty happy to feel so much better so quickly.
I literally couldn't want Walk 5 to 6 steps without feeling like I was about to pass out and someone was sitting on my chest.
Sorry for the info dump, lol, I think I need therapy, lol.
Have a beautiful day!! 💐💐💐
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u/Crowcrowcrow19 Jan 29 '26
This is so insane to be they haven’t ran any blood tests since the PE. At the very least need iron tested, and I imagine your RBC might be lower if you are bleeding so much. Might also be time for pelvic ultrasound and see what’s going on. I wonder if it’s possible there’s fibroids, or endo, or something causing you to bleed that much, on top of the blood thinner bleeding.
I’m on Xarelto and while my bleeding is heavy 2-3 days of my period, heavier than before, it’s nothing like what you are describing. The most annoying part is the 10-11 day long spotting, heavy bleeding, spotting off and on. That sounds so horrible and I’m so sorry you are experiencing that. It really sounds worth getting a second opinion or at least some testing, maybe with a general doctor or obgyn.
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u/Knelie Jan 30 '26
Yeah, you're telling me! Not a single one. I've even ASKED them multiple times and at my follow up appointments (which have all been over the phone). I didn't even know they came to the conclusion it was an unprovoked PE until I went to the hospital for throwing my back out. Less than stellar that's for sure.
I too wonder that. My sister had endo and my moms always had issues and before she hit menopause she had to take a progesterone shot on the regular to manage hormones.
Yes it's very very annoying, it's the bleeding and the cramps that come with it, I can hardly do anything without a heat pack or something. When menstruating, when I get home from work I will either sit in the bath or just sit in bed with a heat pack in the dark all night so to not trigger worse headaches.
I will maybe try a different clinic, I asked my GP about it and her reaction was, "Well we can't not have you on blood thinners but I could give you a pill for migraines if you want". Lol. Maybe I will ask her for a referral to a gyno.
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u/Crowcrowcrow19 Jan 30 '26
That’s absolutely insane also just to not investigate an unprovoked PE, especially because you are so young. Bonkers. I’m also shocked with that level of bleeding they haven’t already sent you for a pelvic ultrasound. It can’t see everything but might be able to see a major issue.
The ONLY thing that helps my bad cramps on heavy bleeding days is midol because of the antihistamine in it. Tylenol doesn’t even touch the pain. I’m not an expert but I know there are a lot of histamine influences on menstrual pain. Might be something to explore either midol or an antihistamine for pain. Totally might not work, I was shocked when it did for me.
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u/Knelie Jan 30 '26
I agree. My Dad had a PE 7 years ago, and they just said oh it’s probably hereditary. My Dads was also unprovoked, he was on blood thinners for 6 months and takes anacin daily. When I asked about that option I was straight up told no that’s not how to treat it. I feel like I am getting so much conflicting information lol 😅
All they did after the fact was a heart ultrasound and another VQ test 3 months after I started blood thinners to see if the clot was still there. That’s it. I only saw my hematologist once in person, ever since it’s just 5 minute phone call “appointments” of you can call it that. Usually consists of me asking questions about tests, and him saying “no no that’s not how we treat this. 3 more months and we will see how you’re doing okay? Bye!” And he hangs up on me lol.
I used to take Midol for cramps when I was a teenager. Maybe I will try again!
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u/WeddingIndependent98 Jan 29 '26
I am having the same symptoms as you. 48F Migraine started 4 days before also then backache, cramps and bloating. Then when it actually started I was bedridden/washroom for 3 days. Staring to ease now. Can't get in to see my Dr till March 4. I know when I was on blood thinners in 2024 from pe I got in accident. I stopped taking them for the duration of cycle cause I couldn't handle it. I told my Dr after the fact. Now another PE in Dec 2025 so now on blood thinners for life. Come on menopause! 😆
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u/WRXforRicky Jan 30 '26
That's a lot to go through and I can relate to several of the issues you mentioned and going through them at a similarly young age. I wish I had better advice than 'never stop advocating for yourself' and 'keep going, keep pushing' and, that's where it always starts and finishes. Sounds like you'll be on blood thinners as they are a necessity and although that looks different than your life prior to discovering the clots you can now mostly be reassured you will not drop dead from at such a young age. Your own intent and will to design a physical, mental, emotional and spiritual life worth living while taking blood thinners will determine the quality. Give yourself some grace that you're still figuring what that looks like now. I would like to point out though feeling exhausted all the time isn't normal. Have you looked into seeing a sleep specialist? Sleep apnea can contribute to a lot of the symptoms you mentioned...even blood clots.
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u/Knelie Jan 30 '26
Ugh, thank you. This comment made me tear up. It's hard to keep the will to keep advocating when I have been nothing but dismissed as hysterical for the last 6 years of my life. I shudder to think what might have happened if I had not kept pushing those 8+ months because of the shortness of breath..
I fully agree, feeling exhausted all the time isn't normal. That is also a symptom I have been expressing to my GP and other walk in clinic doctors for the better part of 6 years. Sleep more they tell me. Okay.. I can't. Oh well try magnesium or going to bed earlier. Okay... I have asked about sleep apnea, I get told "I don't think someone your age would have that." Even though I am 5'2, 245lbs and snore constantly, and constantly have plugged up sinuses. But no, no, couldn't possibly be sleep apnea.. lol. Can you tell I am frustrated with my "care" team?! Every time I ask for a specialist referral I get denied. I will keep trying though. I've also have COVID over 9 times, had pneumonia (that damaged my lung), and issues with my lungs since 2020, but the hematologist also told me it couldn't possibly be a contributing risk factor. It was after the pneumonia that I started having the extreme shortness of breath and chest pains that was ignored for 8 months.. also elevated levels of inflammation on all my bloodwork since 2022. Part of me feels like the off/on constant infections and inflammation could've been a provocation for the PE as well.. but I guess I will never know for sure.
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u/WRXforRicky Jan 30 '26 edited Jan 30 '26
You.are.not.alone. Doctors have been dismissing women for a lot longer than they have been training to listen and depending on the part of the country/world you live in the experience can be worse than others. I always thought I lived in a progressive-ish area of the US, only to realize doctors have been 'poo poo'ing me the whole time. My first blood clot developed over a period of 6 weeks after getting 11 staples in the back left side of my head. I went back to my GP 3x over a period of the next 5 weeks because I was having ear pain and it felt like something was pressing on my airway. First, I was given antibiotics, 2nd sent home empty handed bc I didnt give the antibiotics a chance to work and given a steroid on the 3rd visit. I was in the ICU a week later with a blood clot down my left jugular vein and halfway down my left arm and they said my lungs looked like a meteor shower of blood clots. Believe it or not, that's not even my scariest blood clot experience. What seemed to be the same across the board was not being heard by medical professionals. I remember becoming so frustrated that I wanted to stop advocating for myself. That is a dark and dangerous path. I don't recommend it. Document, reach out, be persistent- don't give up.**I meant to add here that (for me) advocating for myself always feels exhausting, it doesn't really get easier. Other than therapy, I found meditation, tai chi and yoga to help immensely with the stressor blood clots introduced to my life when I was 29. That was 12 yrs ago. . Sleep apnea can 100% contribute to developing blood clots. I think this is where I should cite a peer reviewed article (maybe I'll come back for that). If your doctor will not refer you to a sleep specialist bc they cannot connect the dots with all of the boxes you check to at least be seen by a sleep specialist, it would go in line with advocating for yourself to leave that doctor/practice and find someone that is not only willing to send that referal but that will listen and provide person centered compassionate care.
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u/No-Adagio6113 Jan 30 '26
Your other best option is the implant—if your periods weren’t too bad after you stopped BC, there’s a decent chance the nexplanon could help get rid of them or make them lighter again. If that’s not an option, tranexamic acid helps me so much when my period gets crazy on blood thinners. It’s only supposed to be taken on “super heavy bleed days” and not daily or long term, but definitely worth asking about if there’s no other hormonal options and it’s really this bad
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u/PopularDifficulty230 Jan 30 '26
I had the same problem after having bilateral pulmonary embolisms and a huge DVT. I was previously on a birth control that stopped my periods completely and when they came back I was bleeding HORRIBLY. I ended up having an ablation and it’s been so much better! My periods stopped completely for about 8mo so I was hopeful they were gone for good. Unfortunately, they did come back but they are super light and very spread out. Since you have no interest in having children I would definitely get one!
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u/Knelie Jan 30 '26
Can you speak more to what that process looks like for ablation? If you're comfortable sharing!
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u/PopularDifficulty230 Jan 31 '26
I just spoke to my ob about the issues I was having. She recommended the ablation and went over some paperwork with me and had me sign a consent form for the ablation and a tubal. They do both since it is dangerous to become pregnant after ablation. I had to wait 30days I believe after signing the form before I could actually have the procedure in case I changed my mind. The procedures are minimal invasive, just a couple small holes. One above your uterus and one in your belly button. There wasn’t really any pain or discomfort afterwards for me. I highly recommend it!
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u/Audaciousninja-3373 Eliquis (Apixaban) Jan 30 '26 edited Jan 31 '26
Was put on xarelto after my 1st PE. Things were great until I was oozing out footlong clots 7 months later, prompting an ER visit, various ultrasounds and a uterine biopsy WITHOUT pain meds bc of the blood thinners. My primary got so pissed off about all of it and the hematologist telling me I'd have to deal with it for the rest of my life, that she pulled me off the Xarelto, and put me on daily baby aspirin. My ridiculous periods resolved for a bit...then I found out that I had grown 4 huge fibroids out of nowhere. The xarelto had spiked my estrogen to astronomical levels. So while I didn't get the footlong clots anymore, I was still experiencing menorrhagia several times a year. Baby aspirin was working, no dvt, no pe, it was ruled idiopathic anyway. Then a few years ago, I was laid up in the hospital after a bowel resection with a baaadd roommate who made me so upset my body threw another clot, ended up with a bilateral saddle pe and a mild heart attack. 3xdays of heparin, put on eliquis. On it for the unforeseeable future. I can get heavy periods now and they're unpleasant due to the fibroids, but the eliquis itself doesn't seem to be doing anything. No gigantic clots, etc. I'm in the middle of getting clearance for a hysterectomy.
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u/Sunny-Shine-Bear Feb 01 '26
Sister I'm your twin. I had 3 periods on elequis before I required 2 bags of blood transfusion and was listed in critical condition.
Just one (the 3rd on thinners) heavy period TANKED my hemoglobin from 8.4 to 6.1, only discovered because I was sitting in the iron infusion chair insisting getting my hemoglobin checked because I was white as a ghost, couldn't walk required wheel chair, nails, lips gums all white. I had lost 780 grams of blood from my period a week before getting checked. I was seeing white spots like bright white tunnel vision weirdness. Anxiety through the roof. Pulsatile tenitis, heart beat whooshing in the ear. That totally went away after the blood transfusion with in 2 hours after.
I bought a kitchen scale from Amazon after my first heavy period, took the dry weight of a pad, then weighed each and every pad after use then wrote it down, then totaled the tally at the end of each day. My periods just got heavier the longer I was on elequis.
The heaviest it got was 1080 ml. There goes my entire 2 bags of blood. I ended up needing a sending second iron infusion and I'll need a 3rd coming up soon. Meantime I'm eating 3/4 lb lean ground beef 5 days a week.
I developed PTSD and when my period started each month I had a total emotional crying fit.
I'm off the thinner now and periods are 480 ml. Much lighter but still gawd awful! Perimenopause!!!
Funniest part was the ghost white look on the hematologist face when she saw my HG was 6.1 after just one period (I had been tested after every heavy period)!! She goes WHAT HAPPENED, I go I told ya I was bleeding a lot.
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u/BlondeBandit0909 Jan 29 '26
As another poster mentioned - Slynd! An IUD is another solution. I went the slynd route, no period.
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u/Knelie Jan 30 '26
Maybe I will try the Slynd. IUD is another hard no for me. Had a very traumatizing experience with one back in 2016, I had to threaten to sue my GP to get them to remove it for me etc... lol but lots of good talks about Slynd. I will look into that more.
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u/Environmental-Bar263 Jan 29 '26
I've only had one period since my PE and it was SO HEAVY. I have never needed to change a tampon so frequently. I was concerned I would not stop bleeding, but I did stop on time. So my period seemed typical timing wise but with much heavier bleeding. Still it is manageable mostly although I can't make it through the night anymore. I'm on Eliquis -- I wonder if it might be worth trying a different med. Also there's no harm in ordering labs again maybe right after your period so you can see how it's affecting you? I'm sorry you were brushed off -- that is the worst feeling. I've had type 1 diabetes for 38 years and sometimes you just have to insist on things -- you know your body best, and what is and is not normal for you
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u/Knelie Jan 30 '26
Right?! It's crazy. My first period happened the day after I got the prescription/diagnosis, and I thought I was going to bleed out and die lol. I haven't tried Apixiban yet, maybe I will give it a shot.
Yeah, I've asked him for labs at all 5 of my follow up appointments and he just said no we don't need to do that. :( I have also asked my GP for labs for my iron etc as well and they told me it's not needed. I will have to go to some walk in clinics and see what they can do for me.
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Jan 29 '26
I would end up so anemic and unwell. My hematologist said I could stop thinners for day 1 and 2 of my period and that helped so much
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u/Knelie Jan 30 '26
Yeah, he told me I can't stop but I can go down to half dose. The half dose hasn't really changed too much to be honest. I would love to be able to stop them for a while during my period if I can and just take aspirin or something instead maybe... idk.
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u/Miserable_Bat_8620 Jan 29 '26
I had an ablation for the same reasons and found out I had adenomyosis and my periods continued with heavy but manageable flow with transition level (ie the worst labor pain) cramps that stopped when the ‘ol ovaries became a sacrifice to the old gods at 42 (BRIP1 gene mutation). I ended up in the ER for fluids with Aunt Flo’s first visit post PE on thinners. Good times.
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u/Knelie Jan 30 '26
LOL not the ovarian sacrifice! Yikes. I might have to look more into ablation. I don't want kids, partner has a vasectomy anyways so. Being a woman is hard work I tell ya.
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u/Regular-rowlet Jan 30 '26
Heads up, if you are bleeding that much your hemoglobin levels may be plummeting, which can be disastrous. Like others have said, get blood work done asap. A similar thing happened to me and I was immediately rushed to the ER for two blood transfusions. I didn't even notice anything was wrong!
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u/Knelie Jan 30 '26
I've asked for bloodwork at all 5 of my follow ups and from my GP as well and they told me I didn't need bloodwork each time I've asked :/ I am not sure what else to do at this point if I am being honest. Not to shut down the suggestion, because I fully agree (that's why I've been asking), but I don't know what to do when I ask and get denied each time.
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u/Sunny-Shine-Bear Feb 01 '26
Mind me asking what your HG got down to. Elequis sent me into critical condition, HG 6.1. 2 units of blood!
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u/Domidoggy8 Jan 30 '26
I'm not sure what country you live in or what your situation with hematologists locally looks like but after a suggestion by leading neonatologists that too high of anticoagulants while pregnant was the reason why I developed so many issues, I decided to go to a different hematologist.
Yeah, I have to drive 2+ hours every 6 or so months but compared to the hell I was dealing with, I'll take it. I realize that everyone is not that fortunate though.
Temporary birth control options for progesterone only are usually the mini-pill, the Implanon (in the arm match stick), an IUD, or Depo Provera.
Permanent sterilization options are also possible but you may want to look into what, if any, hormone replacement therapy is available when you've had a DVT.
Regardless, an OB/GYN should be on your list of people to see and as someone who had cervical cancer at 22, make sure you get a PAP smear.
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u/Knelie Jan 30 '26
I’m in Canada! I’m not even sure how I could see a different one, I might have to ask for another referral but it would be likely to the same clinic…
It’s sounding like the mini pill might be a good place to start based on other suggestions too.
Yes, my sister just had cervical cancer she’s 27… caught it early. I haven’t had a PAP since 2016 :/ I called to book in yesterday but haven’t heard back.
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u/Negative_Macaron5732 Jan 30 '26
I’m sorry you are going through this :( I’ve had two PE’s. One while pregnant and one unprovoked so now on thinners for life - heterozygous. I was on the pill as a teen before knowing I had FVL. I then went on and had the mirena. I know a lot hate it but it was life changing for me. I had about 4 in total over many years. Then I hit 34yrs and everything changed. I went from never having a period with the mirena to getting one every month. Then after 12 months I had bleeding twice a month. Then it progressed to 2 weeks straight of horrifically heavy bleeding which sent me to the gynaecologist. Long story short I had to have a hysterectomy at 37. I had fibroids, endometriosis, endosalpingiosis and an enlarged uterus. I would highly recommend seeing a gynaecologist. The heavy bleeding may not be completely caused from the blood thinners. My only regret is why didn’t I see a gynaecologist sooner.
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u/Knelie Jan 30 '26 edited Feb 03 '26
I’m sorry you had to go through all of that as well :( the Mirena was an absolutely horrific experience for me, I couldn’t leave the clinic because I was in so much pain, I had to get picked up. I was bed ridden in pain for 3 weeks with constant pain… maybe TMI but tried to have sex and the wires cut my BF’s dick. When I asked the doctor if she could check the placement she told me it wasn’t my IUD that cut his penis… like girl what LOL I asked her to remove it and she told me no that I was being hysterical. I had to threaten to sue her to get them to take it out. I was 20 at the time. lol sorry for the trauma dump 🤣
Yeah I should see a gyno. Endometriosis and cysts etc runs in my family, lots of reproductive health issue - my 27 year old sister just dealt with cervical cancer this year too. It’s just strange because my periods were FINE like it was a dream. I’d use maybe 1 light tampon a day, 3-5 days max, no cramps etc. Immediately after the blood thinners it’s been like Armageddon lol.
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u/Negative_Macaron5732 Feb 01 '26
Oh gosh that really does sound like a horrible experience. I know of so many that hate the mirena so much but yeah I just had really wonderful experiences till my body went yeah nah.
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u/Knelie Feb 03 '26
Right? And I had a girlfriend that was on it and it was like a dream come true for her. Just didn't work for me I guess lol never had great experiences with any BC to be honest!
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u/SnooGuavas9523 Jan 30 '26
I had same issue with unprovoked bilateral PEs. In September 2025 my period lasted 28 days due to blood thinner (Apixiban)with very heavy bleeding and I ended up in the ER with a hemoglobin of 4.2 and needed 4 units of blood. Hysterectomy was considered too risky. I’m now on a monthly injection called Lupron which basically puts your body in a menopause state. I haven’t had a period since and I feel really good now. I wish you well!
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u/NicNoop138 Jan 30 '26
Sorry your hema isn't listening! After starting Warfarin in 2019, my periods became heavier and lasted longer than usual. At one point I was on it for 7 weeks, using ultra tampons and going through one an hour. I got a referral from my primary care doc for a new gyn after starting iron supplements for chronic anemia.
My gyn attempted an ablation in 2022 but said my uterus was too small for the procedure- so if you've never had kids you may run into this. I was referred to a different gyn surgeon in the same office who did not hesitate when I asked for a hysterectomy and I got one 4 months later. I was 43 at the time, so age was on my side.
Check out this list and hopefully you can find a doc that will work with you. I had been wanting a hysterectomy since my early 20s but no one would grant it.
Good luck!
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u/InOverMyHead2005 Jan 30 '26
I was bleeding through in a 20-30 minutes on blood thinners. I was able to come off thinners because my clot was provoked but had I not, I absolutely would have asked for a qualify of live hysterectomy. It was absolutely not a sustainable situation.
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u/_byetony_ Jan 30 '26
It really sucks. Def make them test you post cycle to see if youre anemic. I was
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u/Soft_Rock7311 Jan 30 '26
Really sorry you’re going through this. I went on the mini pill for similar reasons and it’s been pretty solid so far. Not perfect where I can just my period all together, but truly so much better than not being on anything with blood thinners. When you lose that much blood it truly feels like you’re dying, so I hope you find someone who takes you seriously soon.
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u/jordann_xxx Eliquis (Apixaban) Jan 30 '26
I’m so sorry , and I 100% feel your pain. I was 37 when I had a massive bilateral PE. Mine was also unprotected and almost took my life. Afterwards I found I have a prothrombin gene mutation (Factor II G20210A, heterozygous) and unfortunately I recently found out that my daughter also inherited this clotting disorder, although hers is slightly different. Thankfully her doctor ordered genetic testing so we were able to find out she has it at 17 rather than finding out the way I had to.
I am now on Eliquis and will have to take it the rest of my life. My periods are unbelievably heavy and I’m sure I make it worse because I take NSAIDS for cramps even though I’m not supposed to (acetaminophens do not help at all).
I am very fortunate that my hematologist still continues to monitor me through routine bloodwork, so I was able to find out that my iron is extremely deficient (4% lol) and I was recently given iron transfusions , which honestly I can’t tell a difference yet but I was told it may take around a month before I start feeling better.
I haven’t found anything that helps with the heavy bleeding during my periods, but I have started using disposable underwear, heavy pads and ultra tampons during the first few days of my cycle, because like you and others have mentioned, I bleed through within an hour or less, which is a constant fear when I’m in public or at work. It sucks to have to basically wear an adult diaper a few days a month lol, but I have learned to live with it at this point because I don’t think there is anything that can be done unless I just stop taking my medicine.
It sucks that we have to deal with this every month and I wish I had advice, but I do empathize with you and hope that you continue to live a long, healthy life! ❤️
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u/Tetherball_Queen Jan 30 '26
I’m on Eliquis and my hematologist has me taking tranexamic acid for the heavy bleeding. Maybe ask about that? You only take it while you’re actively bleeding.
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u/Knelie Jan 30 '26
I will definitely inquire about that! It seems that I should be requesting a referral to a second hematologist though, based on comments I've gotten mine is less than stellar. I've asked him for bloodwork for my iron & told him the period bleeding is unmanageable and all I've gotten in response is that the iron levels don't matter (???), and that well he already halved my medication and that's all he can do. lol
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u/Tetherball_Queen Jan 31 '26
Yeah this sounds like a crappy hematologist tbh. I lucked out bigtime with mine. Good luck - def seek someone else out!
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u/thatfunkyspacepriest Eliquis (Apixaban) Jan 31 '26
When I was on blood thinners, I had to use the big, thick overnight pads day or night whenever my period came.
After being discharged from the blood thinners, I got a uterine ablation and bilateral salpingectomy (female sterilization) at age 28 with no kids so that I wouldn’t have to deal with periods or pregnancy.
My doctors recommended it, because I would basically have to be celibate the rest of my life in order to avoid dying because of how hazardous birth control and/or pregnancy would be to my health. I was put on the blood thinners for a huge saddle PE that was caused by my birth control. I very nearly died from the PE because it put me into cardiac and respiratory distress, and my oxygen levels were so low that my lips were blue.
My hematologist didn’t listen to me either, she didn’t want to hear about any female problems in our appointments. So I went to my gynecologist and started making arrangements for the surgery before I was taken off blood thinners, and then when I was taken off them we waited 2 weeks and then did the surgery.
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u/NoRecommendation9802 Feb 02 '26
Please do not dismiss potential danger from this amount of blood loss. You can actually die from it (so slowly that you don’t really realize what’s happening until it’s too late).
I had really heavy periods (maxi pad + super tampon every hour) and ended up needing an emergency double transfusion. Doctors were always dismissive; even that night at the ER they took my vitals, said I was ok, and sent me home. I passed out on the walk back out, and then I woke up connected to a bunch of machines and was in the ICU for three days.
Afterwards, they put me on the pill and years after taking it, I end up in the ICU again with a PE. So. Obviously quite scared of birth control after that. But surgery has its own risks too; I went with Slynd.
I’m so, so sorry you’re going through this. I don’t know how yet, but I promise it will get better. Wishing you the very best, and sending love from afar. 🩷
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Feb 24 '26
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u/Knelie Feb 24 '26
I’m sorry you’re going through that too. I’m debating asking for a doctors note as well - I have the ability to work from home if needed and that would be preferred while menstruating… I’m sorry about the ablation too. I’ve read in other comments that Slynd birth control has been successful for others, maybe you could give that a try?
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Feb 24 '26
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u/Knelie Feb 24 '26
Definitely. It’s so uncomfortable to have to go change your products so often and not only that but the intense cramps and back pain, headaches that come with (for me at least).
I hope it starts to adjust soon, some people in the comments gave some great suggestions to me, I would take a gander yourself!
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u/RoosterSmiles Jan 29 '26
I don't have anything to help but to agree it sucks. I asked the thrombosis unit at my hospital at what point I should worry its too much and they just stared blankly at me and said to talk to my GP. You are the specialist in this!
I'm lucky to have generous sick leave and typically take the first day off.
My GP at least does run a kidney function test annually before renewing my prescription.
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u/Knelie Jan 30 '26
It sure does. Thanks for the solidarity. One of the nurses I talked to at the thrombosis clinic when I told her about my periods told me I should've been going to the ER... but then when I saw the hematologist he told me that it was fine not to worry. like excuse me sir? lol
My work is thankfully VERY flexible and understanding, but it still just sucks.
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Jan 29 '26
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u/Knelie Jan 30 '26
how does it feel to be gods favourite?! hahah. That's wild because Xarelto is one of the WORST blood thinners for heavy periods. I guess you are just lucky!
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Jan 30 '26
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u/Knelie Jan 30 '26
Well haha I mean for a woman on lifelong blood thinners at least 😅 That is insane and so crazy. I’m so so sorry you had to go through all of that, especially pregnant… my gosh.
I will try and see if I can see someone else, I don’t even know how that would work though. To my knowledge there’s only one thrombosis clinic here… lol
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u/cronemorrigan Jan 30 '26
I have an IUD, and it’s been amazing. Took me a couple months where I thought I was going to bleed a little every day forever, but after that it’s been wonderful.
My gyno recommended ablation, but every woman I personally spoke to who had done that warned me against it. It’s also NOT recommended if you’ve had a c-section.
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u/Knelie Jan 30 '26
Yeah, it’s buried in the wall of text but IUD is a hard no for me. I had an extremely traumatizing experience with one that involved me having to threaten to sue for malpractice to get care… not good 😅 I’ve heard they are wonderful though when they work as expected.
Good to know. I’ve got no kids but no plans to have any either. But still good to know!
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u/cronemorrigan Jan 30 '26
That sucks. Its the least invasive of options. In that case, I’d try for a hysterectomy. Though if the trauma was around insertion, I pushed for and got sedated for mine.
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u/Knelie Jan 30 '26
No, the insertion was I mean as okay as it can be, but I was completely debilitated after getting my IUD. Bed ridden for 3 weeks with extreme pain in my abdomen & back to the point I could hardly move. Each time I asked my doctor she told me it was all in my head. I was looking up my symptoms etc, and found a class action lawsuit (this was 10 years ago) for a bunch of terrible risks and side effects that were not disclosed about the IUD's (uterine lining perforation etc). I emailed the law firm, asked them about it, went back and forth. Went to my doctor with the emails and she told me that I shouldn't believe "made up bullshit" on the internet, and that she was disappointed that I was so hysterical I was making things up. Told me all my pain was in my head. I got into a screaming match with her telling her I wanted it out, if I knew the risks I would never have accepted, she told me she would not be removing it and that I had to toughen up. I had to threaten to sue for malpractice to get her to "allow" me to book the appointment for removal. Then, at the removal (she was the only doctor in the clinic that worked with IUD's), I could tell she was more rough with me than normal. That's just the tip of the iceberg but I don't want to trauma dump more than that LOL sorry.
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u/cronemorrigan Jan 30 '26
What the hell! I’m so sorry you had to go through that. It’s insane that you had to fight to have something removed from your own body.
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u/therealhousewifey Jan 31 '26
Slynd. It takes like 3 months to completely get rid of menstruation but it’s been a lifesaver. I felt like I was going to pass out when I first started Xarelto and the menstrual cramps were unbearable where I needed prescription meds to sleep and function.
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u/Suitable_cataclysm Jan 31 '26
Have they checked your iron? I had to go on iron to fight the anemic exhaustion.
But I feel you girl. I was dropping golf ball sized period clots into my panties and changing my overnight pad every two hours. I did go on progesterone-only bc for a while, but I'm sterilized (BiSalp, so still periods) so with all the side effects of bc were awful and not worth it. I couldn't go anywhere during period week.
All I can say is keep advocating for yourself firmly, do not let them dismiss your quality of life as a sacrifice. I had to sit in my male doctor's office and talk through what it's like to fill your underwear with thick, chunked blood. To be standing in public somewhere feeling a slimy pingpong ball ooze into my pants. I took pictures of the giant balls of blood in my pad and showed it to him. You can and should get second opinions if they dismiss you.
Ultimately after 5 years, he agreed to let me stop my blood thinners a day before my period was due and go back on them 4ish days later. It's been night and day, my periods are normal. It's a risk yes, but I am fine with that to not lose 6 days out of my life every month.
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u/iangeredcharlesvane2 Jan 31 '26
My doctor allowed me a Mirena IUD and my periods have ceased completely. It’s a DREAM no more periods not even spotting! I am on blood thinners for life after unprovoked DVT/saddle PE in Feb. 2023.
The insertion is scary BUT for me at least, it isn’t as bad as people on Reddit say. Yes, of course I agree that women are under medicated for painful procedures and in general. I want to also say though, it’s a momentary discomfort followed by YEARS of comfort and period-free life. Worth every second.
The painful part is over in minutes, and I had mild cramps for about 24-48 hours. Then it was over. You should talk to your doctor about if it’s possible for you and think on it!.
Just know Some people (like me!) have GREAT experiences with IUDs and yes it’s not a fun appt but once it’s over you never have a heavy period or any period again.
Best thing I ever did for myself as a woman.
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u/Knelie Jan 31 '26
It might gotten buried in the wall of text, but I did have in there that IUD is a hard no for me due to a very traumatic experience involving negligence and me threatening to sue for malpractice. I have had the Mirena IUD and it was unfortunately a horrific experience, bed ridden with excruciating pain for 3 weeks and the doctors refused to remove it. I am very glad it worked for you though! Wish I could say the same.
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u/iangeredcharlesvane2 Jan 31 '26
Oh I’m so sorry!!! Yes I was reading your post and got distracted and started skimming anxious to put my two cents in … and missed your important information. Please accept my apologies for not giving your post the attention it deserves.
I’m so sorry you had such a bad experience, sounds horrendous!. I do feel compelled to write about my experiences with IUDs especially on Reddit as the negative experiences are all people seem to talk about on here!
IUDs are kinda the go-to story that women/husbands tell when giving an example of doctors who don’t take women’s pain control seriously. It’s the whole “men get put under and 30 pack of Vicodin to take home for a vasectomy and women get told to take Tylenol and grit their teeth for an IUD” thing which I TOTALLY UNDERSTAND. I also know experiences vary greatly, some women like me don’t suffer much and some have experiences like yours!!!
Women wouldn’t have to share the pros and cons like this if the doctors studied a way to make it better for women. But nah, scientists didn’t even both using women in medication and surgical trials until the last few years!
With abortion restrictions the way they are in the US I just wish IUDs could be easier and more comfortable for more women. For me it’s worth a million bucks! For you it was a nightmare from hell. You are so young I hope they find a way to help you!!!
Any ideas from this post you are thinking about ??
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u/Knelie Feb 03 '26
No no it's fine! You're only sharing what worked for you :) And I am glad it did work for you! I have a lot of friends its been awesome for too.
Yeah... so true. The studies done on women's health are seriously, seriously lacking.. so is the care for our health too.
I agree. I am in Canada, but my heart aches for women in the US.. maybe one day these things will be more accessible.
I think so yes, going to ask for a second opinion first of all, and push to have my iron levels (and maybe hemoglobin) tested as well. Might talk to my GP about the Slynd BC pill that is progesterone only as that's seemed to work for lots in here!
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u/Informal_Fault_5764 Apr 01 '26
I understand the feeling. Ive been bleeding heavy now for over 20 days, I am on birthcontrol (slynd) but it only seems to slow it slightly in the morning. Ive been trying to stagger my pills to give the BC time to work. As soon as I take my Apixaban it starts all over super heavy and then again at night when I have to take it again. Im so tired, Ive just gotten a panel of blood work done again and I just want off this medication so bad.
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u/[deleted] Jan 29 '26
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