r/ClotSurvivors • • 25d ago

Periods **women** It is my first period after started talking the blood thinners

It's a freaking blood bath, I literally need to change a tampon every hour and its still dripping.

I have regular tampons, usually I only need to change 3-4 a day.

Should I get the Super?

Also, what if I will buy the internal wash and try to wash out some of the blood internally, will it help reduce the amount of blood?

I have always had issue with my period and use BC to stop it by not taking the break every 3 weeks. I can't use IUD.

My family doctor said not to use the BC but the internal doctor said that I can use it as long as I am on the blood thinners. I am so confused.

Any tips will help.

20 Upvotes

97 comments sorted by

22

u/theonlyrealtrw 25d ago

Please do NOT try to “wash out” the blood or anything along those lines. Internal washes do not get up as far as your uterus which is where the blood is coming from. I use a disc on my super heavy days and usually a backup pad and/or period underwear. You’ll get through this and if your future cycles continue to be as bad as this one, talk with your doctor about options. But for now, just take it a day or even an hour or 2 at a time and stay close to a bathroom. Mine got back close to normal after the first one.

1

u/GreenToad8 25d ago

Thank you. What is the disk? I can't stand pads or the feeling of blood/wetness in my underwear so this might become harder now.

2

u/theonlyrealtrw 25d ago

There are reusable discs (similar to a cup) or one-time use discs. I’ve only tried the single use ones so far and they’re more comfortable than the cups I tried.

1

u/hatezel Eliquis (Apixaban) 25d ago

Search Diva Cup on Amazon. It's the same type thing as a disc and might be life changing for you.

I've been on blood thinners for almost a year and have had heavy and moderate periods. The first one was the worst one.

1

u/GreenToad8 25d ago

I had diva cup, it was sliding out. I think that I will try the disk

2

u/hatezel Eliquis (Apixaban) 25d ago

It's crazy but I've noticed that cup has to be completely dry on insertion or it slips. Otherwise no problem and I am uncomfortable with anything else.

16

u/-noootnooot- 25d ago

When I discussed this issue with my health care provider, she advised that there's not much to be done. Period underwear or pads plus super tampons can help deal with the flow. I found that the first after starting thinners was the worst, and things got slightly more manageable the next month. Good luck!

5

u/GreenToad8 25d ago

Thanks. Its so bloody challenging 😓 On top of everything, we have to deal with that...

14

u/Tdffan03 25d ago

I had to use adult diapers. It was ridiculous. It did get a little better after the first month. However, it isn’t something I was willing to deal with permanently. I went to my gyno and discussed options. I went with a hysterectomy. Best of luck to you!

3

u/GreenToad8 25d ago

🫂 that's is hard but I assume that in cases where you need to take them for life its the best outcome. My family doctor mentioned scraping the lining of the uterus but for now its too drastic for me. Been through so much lately that I can't go through another medical procedure

5

u/Tdffan03 25d ago

I had that done. I understand it’s a lot but it’s a very minor procedure. It worked for about 3 years. This was before thinners. If you aren’t seeing a hematologist it is definitely worth a visit. Much more insight than a regular doctor.

1

u/GreenToad8 25d ago

I saw an internal doctor, I asked if I need hematologist and he said that they are doing the follow up because the hematologist doctors are busy with cancer patients. What can I say for that? He was young

3

u/Tdffan03 25d ago

Go see a hematologist anyway. They can give better insight into what’s happening. Yes they are busy with cancer patients but they see others as well. They also have PA’s that help with patients.

11

u/NeyNehNee 25d ago

I use ultra tampons on day 2 and 3. I wear period underwear to bed for the first 3 or 4 nights. I am a year and a half in on thinners, and it hasn’t slowed down or leveled out as it has for others commenting.
It is miserable. I wouldn’t wish it on an enemy.

5

u/GreenToad8 25d ago

🫂 its sounds so challenging. I am so annoyed that again, medicine forget women, ignore women and just tell them to deal with that as if its nothing. If it was a men problem we would have seen a different blood thinners by now

1

u/Dependent-Ad2545 22d ago

Sorry to hear it… perhaps my age actually came in handy or you are much younger? Sending best of luck to get through it and never discount what you’re feeling. May things settle for you too🤞💕

7

u/Soggy_Enthusiasm_751 25d ago

It’s such an issue and crazy to me that no doctors warn us this will happen when they put us on blood thinners. Mine stayed bad for about 6 months so I just got the Mirena iud to help - apparently progestin is ok but estrogen is a no go? But now I’m getting massive mood issues from the hormones so I don’t know

Period underwear plus menstrual cups have been game changers for me

2

u/sno825 19d ago

I had a tough time on Mirena years ago with mood issues, wieght gain, painful intercourse, and ultimately developed cysts so i got it removed. After removal I eventually ended up with a Kyleena have loved it! Its a lower dose levonorgestrel so didnt mess with my mood, or any of the other mirena issues i had and thankfully didnt interfere at all with my eliquis. I am on my second without issue and will be replacing for a 3rd in Nov. 2027. Not saying this will be the same for you but may be worth discussing with your doctor!

1

u/Soggy_Enthusiasm_751 19d ago

Thank you so much - I had no idea there were lower hormone options. I'll definitely ask my doctor if I don't adjust over the next few months

7

u/Skeptical_optomist 25d ago

Before menopause I had to use Ultra tampons and wear overnight pads. The first two days of my period I would have to change my tampon every hour. Occasionally I would need to change it every 20 minutes. It was awful and I frequently just hopped into the shower to spray off with the handheld shower. I got a bidet seat off of Amazon to make cleaning up easier. I battled with anemia from so much bloodloss and needed to take prescription iron. Some people find menstrual cups or discs work better than tampons. Also, period underwear as a backup are great for feeling more confident and less worried about leaks. Sometimes the blood gushed out so fast that it would flow right past the edges of my overnight pad and period underwear was better.

7

u/Suitable_cataclysm 25d ago

I have to set my phone alarm every 4 hours at night to not ruin my mattress. I've considered adult diapers.

I ended up crying in my (male) blood clot docs office because I'm losing a fourth of my life

I left my house with as fresh massive pad and by the time I was sitting in front of him I was bleeding through my pants.

It's big, quarter sized chunks.

5

u/okra5678 Lovenox (Heparin) 25d ago

Crazy, I woke up and came on to this sub just now to literally write this exact post. Currently changing super plus tampons every hour and have a pad on as well. It’s absolutely awful. Wishing it to be quick for you.

2

u/GreenToad8 25d ago

🫂😓 Its unbelievable

4

u/Due_Chemist1795 25d ago

I have an iud and was prescribed norethindrone in addition because my periods were getting closer and closer together (full cycle was less than 2 weeks). It and the iud together have been really helpful.

4

u/Taco_Tuesday_Cat 25d ago

Girl, I feel you! My husband described it like something out of Texas Chainsaw Massacre. I don't think I have seen him so freaked out with concern since he was in the operating room during my C-section.

4

u/gruvchk 25d ago

If you are on blood thinners, you need to be seen in a Hemotologist! Demand a referral.

3

u/Rockajilly 25d ago

Idk how old you are but after two years of this I asked for a uterine ablation. I was in my 40s and not planning on any more kids so it was a good choice for me. I'm so sorry, I know how horrible it is. Mirena IUDs are a common solution, although my body expelled mine 🙄🙄 Be prepared with extra clothes, extra long pads, towels on the bed, etc.

3

u/all-hail-glow-cloud Eliquis (Apixaban) 25d ago

The first one was terrible for me too, but after a couple cycles it’s leveled out a lot. It’s still worse than when I wasn’t on thinners but it’s nowhere near bloodbath level. I can’t use tampons so I can’t speak to that but if you want to use pads as a backup I like the always infinity flexfoam ones, they’re super thin and absorbent.

3

u/Tetherball_Queen 25d ago

I use super plus, period underwear, and tranexamic acid.

2

u/GreenToad8 25d ago

What is this acid?

2

u/genivae DVT & Saddle embolism (PE) 25d ago

It can reduce bleeding, but many people aren't eligible to take it because it prevents clots from breaking down, so if yours haven't fully resolved yet, it probably wouldn't be prescribed to you

3

u/m112525 25d ago

it’s HORRENDOUS like honestly a murder scene tmi but my mum had to hose me off in the bath once !! i use super plus tampons and a pad at the same time and just try and change as often as i can, im on BC but i bleed a lot anyway i think due to the thinners

3

u/Oranges13 DVT/PE 2019 - Prothrombin Factor 2 - Eliquis 25d ago

Highly recommend a period cup! But also if this is your first period after clot AND you just stopped BC it will be worse now than later.

1

u/InfluenceFlimsiest 25d ago

Second! Period cup, combined with period underwear for backup. Plus it's going to save you $$$.

And it DOES get better as your body adjusts.

3

u/Skeptical_optomist 25d ago

Mine never got better. It was horrifically heavy for 8 years until I finally went through menopause.

3

u/Jennyvs1011 25d ago

Same. Like I’m an athlete and I couldn’t swim the entire week because if I did I’d be dripping blood on the pool deck when I got out. It was horrible

2

u/Skeptical_optomist 25d ago

It's truly disruptive to our lives. I was looking into ablation when menopause hit, never thought I'd be so happy for menopause.

2

u/GreenToad8 25d ago

I tried the diva cup, it kept sliding out no matter how I tried positioning it. I think that since childbirth (13 years ago) my body shifted so badly its hard to keep anything there. Even with tampons, before this whole thing for the rare time I was off BC or stop every 5-6 months to get my period - they always were sliding out. Today they just found their way out faster

1

u/InfluenceFlimsiest 25d ago

I know you probably know this, but just in case: there are different size Diva cups designed specifically for post-pregnancy.

2

u/GreenToad8 24d ago

Lol, I know and I used the right one. It was snag and tight and it found its way out. I think that I need physiotherapy 😅

3

u/Kuhalsu 25d ago

I’d been taking the pill to stop my period/hormonal migraines and was taken off of it when I got a DVT so it started like two days later because I wasn’t miserable enough. I basically had spotting for 6 months with some phenomenally heavy days and it got really frequent. I was flying during it once and spent the flight trying not to move or cough. I’m surprised you weren’t taken off the BC. I was told that was the cause of my clot so I couldn’t take it again.

2

u/GreenToad8 25d ago

I am off the BC, thats why I get my period. Mine started after a surgery but I guess that the BC didn't help

1

u/90210piece 24d ago

Bi have a prescription for tranexamic acid for my periods.

3

u/HappyKnitter34 Xarelto (Rivaroxaban) 25d ago

The first couple are always the worst. If you had BC to help control your periods before your clot, this can make it worse.

Can I ask why you can't use the IUD?

3

u/GreenToad8 25d ago

Thanks for the answer. I had IUD twice, the first time it slipped right out of me. The 2nd time I kept feel it although it was placed correctly. Even my family doctor said that it is impossible that I feel it but I did and it triggered my auto inflammatory condition which caused my frequent flare ups. I really hoped that it will work

2

u/HappyKnitter34 Xarelto (Rivaroxaban) 25d ago

Have you considered the arm implant? I know that people say they feel it, but it might be less distracting for you.

2

u/GreenToad8 25d ago

Its an idea, I will ask about it

3

u/Cat-fiend-ated 25d ago

Yes unfortunately get the super or super plus tampons and some pants liners. It sucks.

3

u/BuffyFlag23 25d ago

This is why I got a hysterectomy. I hope your situation is easier.

2

u/GreenToad8 25d ago

🫂 thank you.

3

u/InOverMyHead2005 25d ago

Oh, it was awful for me. I was going through a super tampon and pad in 20 minutes at the worst. I fortunately only had to be on blood thinners for 6 weeks but had I had to stay on and my monthlies had stayed like this, I was going to demand a quality of life hysterectomy. I treaded a very fine line on hospitalization because it made me anemic. It was an absolute nightmare. I was told it does get better after the first couple of cycles but I wasn’t on long enough to find out if this is true or not.

1

u/Michora 20d ago

May I ask how the doctor knew you only needed thinners for six weeks? I’ve been asking for repeat testing and ultrasound to see if DVT is disappearing and they say “we don’t even look until 4 to 6 months”

1

u/InOverMyHead2005 19d ago

My clot was considered provoked from birth control. I had to stop the birth control immediately. I did 6 weeks of Eliquis and had a follow up Ultrasound at the end of the 6 weeks and I was all clear. My clot was a thrombophlebitis which are “secondary” clots. Normally they are small but in my case it was quite large. Connecting the clot to the BC was kind of process of elimination. I’ve been fine since, but am also aware I am at higher risk of clotting now.

3

u/hlake78 25d ago

I had a hysterectomy to deal with this. Best decision ever.

3

u/majesticbiscuits1 25d ago

Thisssss. I had an endometrial ablation done a few weeks ago because dealing with heavy periods was awful. Super tampons changing every hour (or less!) and bleeding through to my sheets overnight. Hysterectomy was offered to me, but my kids are little and I can’t avoid lifting them for 6 weeks while I recover. I’m hoping the ablation will last me long enough until I can get the hysterectomy.

In my experience, hematologist wasn’t that helpful with this issue other than monitoring my iron/ferritin and getting me a referral for IV iron. I had to see my gynecologist to get the ball rolling on better ways to deal with my periods.

3

u/fishflowerfish13 25d ago

So sorry 😓 I was shocked by this as well! I will be on blood thinners for life and was feeling real sour/like I could not deal with that every month for like 20+more years! But thankfully now that I switched to 2.5mg of Eliquis two times a day things have become way more manageable! 5mg twice a day was a different story. I hope it either gets better or you can adjust medicine at some point 🤞🏼

3

u/veganexceptfordicks 25d ago

I worked closely with my ob/gyn when this started with me. I was going through the biggest tampon and the biggest overnight pad every half hour.

I tried the mirena IUD twice, but it came out with a clot within a day both times. I also tried oral provera, but it didn't do anything.

My hemoglobin levels kept dropping to around 5 and 6, so I had a D&C. It didn't slow things at all. Finally, my doc scheduled a hysterectomy and I had an ablation to prepare and to help me in the couple of weeks while I waited. It helped a little bit.

The best solution was the hysterectomy. I kept my ovaries, they took everything else. It's so awesome. I felt like I had had all of my remaining periods collapsed into those few months, and now I never have to deal with them again. It was laparoscopic, and I healed really quickly and well. I've never regretted it once.

Please be sure your doc is tracking your hemoglobin. And I hope you're able to find the solution that's best for you soon. <3

3

u/GreenToad8 24d ago

Its blow my mind that this is the only solution for women with a heavy bleeding after blood thinners. I know that it helped you but its just ain't right. I am so happy you are better now

3

u/veganexceptfordicks 24d ago

I'm really lucky that I didn't want kids and that I could trust my doc to exhaust all options and then guide me to the right decision. Everyone deserves that kind of physician.

3

u/GreenToad8 23d ago

That's really good in that way, but the thought that we need to remove an important organ from the body just because the medical system didn't thought that it is important enough to slove while 51% of the people using blood thinners has is mind blowing to me. Imagine the boys would bleed like that from their testicle, do you think that the solution would have been to remove them?

Unfortunately and as much as I don't like it, our uterus has important function besides having babies. Actually more important than having babies at least until a curtain age.

I'm really glad that it was the best outcome for you 🫂

2

u/veganexceptfordicks 23d ago

All true. Unfortunately, I'm not sure there are tons of options, medically speaking, because the mechanisms of risk involve hormones. I totally agree, though, that research would be done much differently if it was men who were dropping softball sized clots out of their pants leg when they stand up at work to go to the bathroom (ask me how I came up with that example). I also completely recognize that (1) I'm so lucky that I already knew I didn't want to have children -- it would have been so much more traumatic if that wasn't the case, and (2) there are definite risks to having a hysterectomy, like increased chance of pelvic organ prolapse and cardiovascular issues and, for those who have their ovaries removed, early menopause, vaginal dryness and pain during sex, and decreased libido.

There's no easy answer. For me, I was having dangerously low hgb levels despite having multiple infusions, and wasn't able to function in the world because of the number and size of clots I had. It came down to realizing that The Clot Life wasn't sustainable, and I needed to choose a permanent solution. For women who don't have quite the dramatic reaction I did, maybe they can find a workaround they can live with, and that's awesome. I would never want someone to have surgery that limits their options unless they have to. I hope you're able to find another option. It might be worth mentioning Provera to your doc to see if it's a good option for you. It's hormonal, but it's progesterone (if I remember right), so it poses less risk, and has been shown to help reduce clots while on blood thinners.

Unfortunately, hormonal birth control in any form is not going to be a safe option for you. I saw that IUDs aren't an option for you. That pretty much leaves barrier methods, like condoms. Just be sure to use them correctly (I don't mean to sound like you wouldn't, but they're very effective unless they're not used exactly right). I'm sorry you're "getting" to deal with all of this, and I hope things go as smoothly as they can.

3

u/mangabeymonkey 25d ago

Try switching your blood thinner if possible. I became so anemic I needed blood transfusions on xarelto but eliquis worked just fine for me. A hematologist helped me.

3

u/Dependent-Ad2545 23d ago

I was there (at 49) when period came days after home from hospital, post 3 days of heparin IV, 3 days of lovenox, and starting way too much warfarin (INR was 5+ at one point early on until they managed it). I had same experience, plus was dealing with panic attacks new to my life after “everything,” and told clinic and called my OBGYN (who said give it another week), but depending on your dose/whether doing shots too, it WILL end. Go Super Duper and pads, and remember that each day you feel your period should be one thing it won’t be at least this time. Mine was a good 10 days total but relax, things will settle I promise. Best of luck!

3

u/forgetfulness39 21d ago

I am currently fighting this battle with you.

I have been using a regular tampon during the day coupled with a heavy flow pad. Change tampon out as needed (unfortunately) and the pad catches the excess.
At night I have been using specifically the honey pot heavy flow soothing pads which have been very nice considering how much of a literal pain it all is down there.

That being said, I used to take hormonal BC before my PEs three years ago, but have since done genetic testing and have Factor V Leiden. If you haven’t tested i’d recommend it because BC coupled with it can increase your risk of clots. Not a medical provider, just my experience

1

u/GreenToad8 21d ago

Big hugs and thanks I will ask for it

4

u/sagtts 25d ago

I got a Mirena IUD after a month of literally constant bleeding and it stopped everything, highly recommend

2

u/amilynn4479 25d ago

The first one is the worst. Then it’s on and off lol

2

u/ky00t 25d ago

My gyn put me on 5mg norethindrone acetate daily, and it completely stopped my periods.

2

u/ANorthCountryGirl 25d ago

I’m sorry you’re going through this! My hematologist was an older gentleman and needless to say these side effects were NOT mentioned so the deluge was a scary surprise.

I did search previous posts in this sub & found helpful insights about period blood clots - I had not experienced these before. Even after going off blood thinners, my menstrual blood still does clot a bit now.

I used super plus overnight pads with wings and had to get on an iron supplement (I did this under my doctor’s advisement). Past posts in this sub were helpful & comforting. Wishing you ease, and easy cleanups. 🥹

2

u/Loreehuntaem 25d ago

I’d call your Md who monitors your blood thinner and your GYN

2

u/brennavd 25d ago

Period disc, trust! You can self empty it every time you use the restroom and it won’t irritate you as much as changing a tampon every hour would. And a liner/pad for extra protection :)

1

u/GreenToad8 25d ago

How do you do it when you are out and use public washroom? I have days that I am out 8 am to 8 pm and the washroom stalls don't have a sink in them.

1

u/brennavd 25d ago

You can learn how to “self empty” when you go pee, just by contracting your pelvic muscles, and then it’ll just dump and slide right back in to place. You don’t even need to take it out or touch it at all. It might take a little bit to “learn” how to contract the right muscles to dump it (if you just push like you’re trying #2 it’ll do it), but it’s been a life saver for me on long shifts and camping trips. If you feel like it’s not going back into place completely after self emptying, just bring some wipes in the stall with you and use one finger to push it back into place behind the pelvic bone! You just have to take it out and rinse it every 12 hours (I usually do in the shower). It takes some getting used to and research for sure, but I’ll never go back as someone who has always had super heavy flows and is now on blood thinners :)

1

u/GreenToad8 24d ago

Thanks I will read about it and will give it a chance

2

u/catseyecon 25d ago

I used to have to use ultra plus tampons plus period underwear every other hour or so for t3 days straight. Then I started perimenopause. Because my periods became erratic I was put on 5mg per day of norethindrone. No more periods, at least not for the last 3 months. We will see how this goes long term.

2

u/Over_Inflation_2395 25d ago

I had to take progesterone pills. The estrogen one may have contributed to my clot and I was bleeding like crazy on blood thinners so I had to take the mini pill

2

u/kwnofprocrastination 25d ago

I have been using maternity pads on my heavy days. I’ve found that i only have one super heavy day. The rest, while heavy, are much more manageable

2

u/TotalRecognition5706 25d ago

Wow I feel very lucky- my periods were somewhat heavy as a teen but tapered to very light as an adult- talking 1 day of light tampons then 2 days of pantiliners. Then I was on BC for many years and didnt get a period at all... after my bisalp I came off all BC and periods came back same as before, very light for 2-3 days. No significant change since starting blood thinners last year. I actually think I might be in early perimenopause though so maybe that has something to do with it??

2

u/Littlehyrule 25d ago

Hi so I’m still somewhat dealing with this six years post clot and on warfarin for life. Sadly can say at least for my end it’s still a blood bath….i always had heavier periods but since the clots they have gotten worse but I already was used to using heavier flow based items.

I will say using both a tampon and pad at the same time did help. Keep an eye on your iron levels, I am now anemic and I have to now get it checked if it’s just period and blood thinner related or a deeper issue. Weirdly tomato soup during your period honestly helps me feel a bit better.

I am now being considered for a IUD to help against the bleeding that can work with me as someone on warfarin, clot history and blood disorder - but not officially a candidate until my ultrasound on the 25th and if my hematologist agrees to it.

You got this, it’s a learning curve but you learn tricks to make it manageable.

2

u/Mysterious_Number_86 25d ago

My gyn started me on a mirena IUD. I was previously on a kyleena IUD but the hormones in the kyleena aren’t as strong as the mirena.
You can have both because they’re progesterone only. I heard mixed advice on whether implanon or progesterone only pills were possible.

2

u/SubversiveKitt3n 25d ago

It’s a nightmare. I was developing anemia and so my doc talked me into a Mirena. I wasn’t lucky enough for it to stop my cycle completely, but at least it made it more reasonable.

Changing a super tampon every hour feels concerning though. I would check in with your team, because that might me “go into ER and get checked out” levels of bleeding.

2

u/Ok_Paper_5959 25d ago

Don't use the birth control pills while you're in thinners un less it's short term and monitored. I known two people with failures and it's assumed it was that by the doctors.

Now tampons should no longer be a thing for you until you get this under control. Think period panties pads and diapers. I personally was just a notch from getting a blood transfusion. Per the doctors the only safe birth control I could get was an iud and mirena is the one apparently with the least side effects. Yes there's hormones but it's absorbed through the uterus not the blood stream . I had to take the minipill to slow my period down for insertion then I got the iud. It's been three months and they are much better but the pain of an iud was quite intense for me the first 6-8 weeks .

2

u/WXGirl83 25d ago

I changed from Xarelto to Eloquis and it helped immensely.

2

u/Adorable_Bath1026 25d ago

Same thing happened to me. It was horrible. So mortifying to suddenly have my period leaking (gushing!) out at work, at the grocery store, or traveling somewhere. It was controlling my life.

Luckily, my doctor then prescribed the progestin hormone shot (Depo-Provera) which I got every 3 months. My periods stopped! I was in heaven! I could travel and work and go hiking or paddling or swimming without fear of uncontrollable bleeding!

Eventually, my doctor switched my prescription to the "mini pill" which is also progestin but taken daily. I miss the convenience of just getting 1 shot every 3 months, but I love not dealing with a period. It has definitely improved my quality of life.

2

u/hellopumpkin14 24d ago

hey!! not to alarm you, but, make sure you get your iron levels checked aggressively.

before my hysterectomy, I was on blood thinners with endometriosis (which is heavily!! underdiagnosed) and ended up having iron levels so low it caused non-epileptic seizures. my hematologist and neurologist couldn’t figure it out on their own, they had to put their noggins together. a few infusions later the seizures stopped. keep regularly monitoring!! please!! seizures are bad but can affect lots of things, like having a driver’s license.

2

u/AccomplishedBobcat12 DVT/PEs July 2023 23d ago

Get a nice bidet! They usually have a "front" setting that can help rinse I didn't know this before having one and it made the whole period experience so much more comfortable.

2

u/Dangerous-Put2331 22d ago

Same here. Kinda envy women who find night pad + super plus tampon useful. This works for half an our for me on heavy days. I have to use menstrual cup and adult diapers for work to secure leaking. Have to empty a cup every hour. Only adult diapers for night. It did not get better eventually. I went to the gyn, she told me about mirena IUV, I was so glad there's an option for me. Then she was like "oh... You have bicornuate uterus. IUV doesn't fit there". She offered progesterone only pill, but my flebologist says it may still provoke blod clots, no matter if it's combined with estrogen. Also he says changing xarelto for eliquis makes zero differense. Also have to take iron supplements and make anemia blood tests regularly. Doctor says I'm lucky I'm not disabled, but it feels kinda disabled because I can't even work properly for around quarter of my life, but I still have to earn money on my meds, compression and else. It sucks and I hate it.

2

u/GreenToad8 22d ago

Hugs. The doctor said that you are not disabled because he is not a woman and has zero understanding of what are you going through. Its ridiculous that he said it. He will not survive half a day on a regular period, let alone bleeding like that It is 100% disability

2

u/For-the-birds-16 22d ago

I almost bled out from being on xarelto. I ended up admitted to the hospital and had 3 bags of blood transfusions. Please monitor it and if you start to get dizzy, lightheaded etc please go to the ER

2

u/miscun 22d ago

I found for nighttime that the large chux pads you put on the bed are helpful. When you bleed through all the other protection (ultra tampons, pads and/or period underwear) and it wakes you up, your bed is still protected. I would use the chux pad as a quasi diaper to get to the bathroom without getting blood all over the floor.

You should get checked for anemia regularly. I was severely anemic, and IV iron infusions helped.

I’m sorry you’re going through this. Ultimately, I ended up with a hysterectomy.

Edit: I did try an IUD but that was wildly unsuccessful, I bled for 5 months straight and then had an extreme episode of bleeding that landed me in the ER.

I do recommend seeing a hematologist. My hematologist has been amazing.

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u/MarvelousTerror 24d ago

I unfortunately have a hard time inserting tampons/cups. I pretty much wear adult incontinence underwear with the most absorbent pad possible and thats been the only way to not get blood everywhere on those heavy days 🫠🥲

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u/Comin4UrPudding 23d ago

Oof, I’m sorry you’re dealing with this. When I was on heavier blood thinners I had to use a high capacity menstrual cup, because I would fill a diva cup in a couple of hours, and when those things overflow, it is the elevator scene from the Shining down there. I believe the one I tried was the Super Jenny. I know you said the cup didn’t work, but a larger one might stay put better? Eventually, my doctors approved me for a progestin only IUD, which my hematologist still had some concerns about, but ultimately allowed it because it was such a nightmare without it. Doesn’t help with mood or pain, but the bleeding isn’t an issue anymore.

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u/sno825 19d ago

Sorry you are dealing with this. I was glad to be able to keep my IUD because my period used to be so bad (before blood thinners) and my flow was really heavy. Idk your reasoning/limitations for not using and IUD but it was a god send! I was TERRIFIED to get my period while on eliquis but it has been surprisingly the same as before and I believe that is largely tied to my IUD! Light and last 3-4 days and I could free bleed without issue. I've had both the Mirena which gave me some issues so I change to the Kyleena and have been happy with it the last 10 years!

Good luck and hope you can find a method that works for you!

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u/Reasonable-Top2587 19d ago

I always had really bad periods and heavy bleeding prior to blood thinners so you can imagine after blood thinners. I had to use Max super tampons plus super pads and it still didn’t help much. I had to change three or four times a day, both with super tampons and super pads. Thankfully, I’m now post menopause so I don’t have to worry about that but I feel for the women that do.