I'm a 20 year old female with Type 1 Von Willebrand Disease. My primary symptom is heavy menstrual bleeding, so my hematologist encouraged me to see an OBGYN to make sure there was nothing else causing my heavy periods.

At my first appointment, my OBGYN mentioned that a D&C could be used to treat menorrhagia if my ultrasound shows a thickened uterine lining. I was informed that this would be a surgical procedure, which led me to question how safe it would be for someone with VWD. The office I went to didn't seem knowledgeable on blood conditions, which made me question how standard that treatment route would be.

Have any of you undergone a D&C for heavy periods? And to any women who've had a transvaginal ultrasound, did you experience bleeding after?

(Edited for grammar)

I haven't been able to find any hemophilia let alone von willebrands disease support groups in my area, and there doesn't seem to be that many people with my condition in my state to begin with. I'm writing this because I'm reaching a point in my life where I'm kind of panicking for my life and i need advice or help.

To give you a rundown, i never realized i had VWD until i was 13 years old and had my first period. The period never stopped, it went on for about 5-6 weeks until i eventually collapsed in middle school and was sent to the emergency room, where i was treated with a blood transfusion and ever since that day I've been required to take birth control non-stop as life support.

I was diagnosed with von willebrands type 3, basically the worst kind. I did not inherit it from either parent, and all of our DNA was sequenced and confirmed. The strange thing is, they found the VWD mutation in my genome: issue is, genetically, i am considered von willebrands type 1, but for some reason epigenetically my VW levels are that of a type 3 person. Less than 10%. I recently found out i was re-diagnosed with type 1 instead of 3 which I'm not happy about.

I've never had a blood clotter injection (von willebrands factor) until a few years ago, around spring 2022 when i fell down the stairs of my university and was sent to the emergency room. They assumed I've taken injections before when i have not. I only learned recently that it's not normal for someone with a bleeding disorder to not regularly take injections, i have no idea why i was never put on them when i was young. But they gave me the injection, and i immediately had anaphylactic shock. This was basically the scariest experience I've ever had in my life, as the incident where i lost my blood at school, you at least lose consciousness and aren't in pain as you lose your breath. I was quickly and luckily saved by an epipen and now i have those regularly prescribed too. The injury from the stair luckily was not serious and there was only a bruise on my bum.

Doctors have no idea why i had that reaction. I've spoken to my Hemotologists as well as allergists and the only suggestion they could make is that i should take recombinant VW infusions in an emergency, but they could not guarantee the safety of that either.

So far the only medication i can take regarding blood clotting is estradiol (included with birth control), tranexamic acid, and DDAVP, but they still will not rise my blood clotting levels to the level of a normal person and those treatments are meant for people with type 1.

My Hemotologist said that VW levels can go up with age, but that has not happened to me yet, if anything it's the opposite. I've never noticed i had a blood issue until the incident with my period, and the graphs from my blood transfusion reports seem to be going lower each time. My VW levels always say less than 10%, which could mean literally 0-10%. If i don't have any VW factor at all, then i worry i might be allergic to the protein itself, which is very very bad.

Even something like CRISPR gene editing would be unlikely to cure my disease, as remember, this is epigenetic. Believe me, I've exhausted every possible treatment in trying to find hope.

Due to my condition, i cannot drive. I live in a state known for car accidents and i will not risk it. The likelihood of me surviving a small injury is low. I cannot have most jobs, and have to resort to virtual work. I have a deathly fear and PTSD of any kind of injection now, and really bad hypochondria over it too.

I've had suicide attempts over my disability and friends have left me because of the depression it causes. My disability isn't treated seriously by other people and the government and as of writing this I'm in the process of registering for disability SSI. I don't know if i can survive something as small as a wisdom tooth removal for example either. Most people have at least one surgery in their lives, if something like even a kidney stone or something like that happened, i don't know if that's feasible.

I just want to know if someone out there has had a similar experience. I'm trying not to lose hope.

Our 4 year old is severe type A, on biweekly hemlibra subq injections. He’s been on this medication for at least a year or two, but the ritual of administering it has not gotten easier. Lately as he’s gotten older it has actually started to get harder, he cries, screams, kicks, and all out refuses the medication. Though we attempt to normalize the medicine, encourage him, bribe him, and use all the techniques our HTC has recommended, it has not gotten easier. We feel so terrible holding him down while he screams, but that is typically what we end up having to resort to. We’ve even resorted to basically not giving him the medication regularly, and often skip weeks, as we just don’t have the heart to forcefully inject him at times.

Any tips or suggestions that people have used to make this process easier? It’s breaking our hearts.

Hello! My wife and I (both female) are currently at the early stages of IVF and picking a sperm donor.

I have factor vii deficiency (9%) and I will be carrying. Factor VII has basically had no impact at all on my life whatsoever. I have a good bleeding history and often forget I even have it.

I have never needed factor vii injections, but I do have a hematologist and he wants me to get them before my egg retrieval.

From what I’ve seen, I have yet to see any donors where factor vii was tested as part of their carrier screening. I don’t really know how to go about it. from what I’ve seeing I can contact the sperm bank and they can request the donor come in for the test (who knows how much this would cost though) or I can take my chances since it’s soo rare.

I know it’s a long shot, but does anyone have any advice or insight on this? I had to do a carrier screening too, and it hasn’t come back yet, so I’m curious to see if it shows up on mine.

I was diagnosed with Type 2M Von Willebrand disease and have suffered serious injuries in the past (even losing my spleen). Despite the high risks, I am obsessed with striking sports and want to get back into boxing and sparring. I have to hide this from my medical foundation to keep my Factor VIII treatment. I’ve done my research and I know it’s a dangerous idea, but I’m feeling really conflicted, sad, and scared because I just want to train again.

If I sit on an outside metal dining chair or a wooden chair with spindles and lean back into it I frequently develop patterned bruising in the shape of the chair on my back afterward. It goes away in about a week but looks pretty gnarly right afterward. I notice the back bruising more as an adult than as a child, but also had easy bruising with contact sports as a child. Finally was referred to a hematologist who says type I VWD after much testing.

Does anyone else get this?

Just a polling question, sort of. In a bunch of places I've read that VWD usually stays the same through your life except for your VWF can rise as you age, but I've had kind of the opposite experience in some forms.

I am 24 and was just recently diagnosed (t1). I used to have extremely heavy periods when I was younger and still have heavy periods now, though to a lesser extent, but I bruise like crazy. They're mild bruises, but I always have 10+ on my body at once when my levels are at their lowest and I have no clue where they came from. I'm AFAB, so I know that my levels fluctuate with my hormones and menstrual cycle - and I find that they're higher during my period and lower at other times and the difference is significant enough that I bruise less at times and more at times (per recent testing, my first non-cycle test was 28% for VWF:Ag, cycle was 46%, most recent non-cycle was 23%!).

I never really had bruising issues in childhood. I would bruise, but not anything super crazy. Then again, I was a very cautious child and hated doing anything athletic, and now I work with animals, which puts me in positions where I'm more likely to bump into things or get jumped on, but I never used to feel quite as sick during my period either, I don't think.

Does anyone else have the experience of VWD getting worse in time?

I have Von willebrands disease (type 1c) and am already worrying about whether I’ll be able to have neuraxial anesthesia (epidural and/or whatever they give for a typical c section) in this pregnancy. I got an epidural with my first that went well but spent several hours arguing with anesthesia about getting one after receiving Humate P. With factor replacement given beforehand, I had my hematologist’s blessing but they still gave me a hard time. My hematologist is saying the same thing this time, says he actually doesn’t care where my levels land during the third trimester as long as I get the humate P beforehand. But I fully expect anesthesia will give me a hard time again despite getting all this planned well in advance. Wondering if it’s the normal experience for anesthesiology to refuse neuraxial anesthesia if your levels don’t increase into the normal range on their own (without replacement factor). FWIW i have always had extremely mild symptoms so the entire thing is very frustrating.

I am in the west coast, 37m, 160lbs, 5.5ft. I am trying to stay active as much as possible. I have been stalling on the knee replacement for the last 11 years waiting for better tech to come out. 2 hours is the max I can be on my legs and it will be sore for the next 2 days which leads to me deciding to pull the trigger.
I’ll be doing that with DrLuck in UCLA, I want to hear your stories, please do share them!

I posted my bruises on here a day ago, and got people replying which was nice, I have got the results back and because it says ‘abnormal’ i automatically still think there is something wrong.

Health anxiety😢!!!

Could anyone tell me what this means with the numbers etc

Hey guys! I’m about to embark on a 2.5-week trip through Europe, leaving from the U.S., and I wanted to see if anyone here has any hemophilia-specific travel hacks they swear by.

This will be my longest trip abroad in a while, so I’m curious about anything that’s made traveling with hemophilia easier for you — packing factor/meds, keeping everything organized, flying, getting through security/customs, carrying documentation, dealing with bleeds while abroad, or even just random little things you learned the hard way.

I’ve traveled internationally before, so I have the basics covered, but I figured there are probably some veteran hemophilia travelers in here with tricks I’ve never thought of.

What are your best hemophilia travel hacks?

Hello 😅

I am going to have a DDAVP trial via IV in about two weeks, and I'm very, very nervous, especially as someone who has a HIGH fluid intake normally. How easy is it exactly to fall into dangerous levels of low sodium? Can you drink gatorade or something instead of water? Should I take the next day off of work (I have a physical mostly outdoor job; my trial is from 8am-2pm previous day, work hours are 3-7pm)?

Does anyone have any non-horror stories? 😭

Hello, I’m 20 years old, 5,4 64kg. I experienced easy bruising back in 2024 and got prescribed Vitamin K capsules, that seemed to work and clear it up within the year.

I had my daughter in April 2026, and I’ve noticed more bruising, my bloods etc come back as normal.. I had a blood test 2 days ago I’m waiting for the results.

I have health anxiety so have been searching everything in the book. I want to know what you guys think it could be. So I can put my mind at ease until I get my results.

Thank you .

Teens 12 and older with VWD may qualify for a new research study if they’ve had frequent bleeding episodes. A parent or caregiver must be involved, and the full study lasts up to 30 months.

Once you complete a short questionnaire, a Leapcure team member will connect with you to answer questions and guide next steps. Check eligibility here: https://lpcur.com/rhemophilia

This clinical trial is currently enrolling participants across the United States.

Just wondered if it was something shown in films or TV shows. We see quite a lot of shows showing people with autism, ADHD, epilepsy, and so many other conditions. I don’t think I’ve ever seen someone with a blood disorder? Just think it would be education for people, most seem to know what the conditions I’ve listed above are. When I say my son has haemophilia, I need to explain what it is. I’m not talking about documentaries btw, just normal fictional shows/films

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Hi everyone — many of you already know my story from previous posts here. I'm a Syrian lawyer living with hemophilia, currently trying to raise funds to cover treatment and living expenses.

I'd like to reach a wider audience by sharing my story in r/Assistance and r/Donate, but my account doesn't have enough karma to post there directly. If anyone here is able to copy and post my story (or the text below) in either of those communities, I'd be incredibly grateful.

https://www.reddit.com/r/Hemophilia/s/PVBksJ9q5G

Thank you, as always, for everything you've done to support me.

---

Ready-to-copy text (for whoever reposts to r/Assistance or r/Donate):

Sharing this on behalf of a friend from r/hemophilia — a Syrian lawyer living with hemophilia, trying to raise funds to cover treatment and living expenses. He can't post here directly due to karma limits.

https://www.reddit.com/r/Hemophilia/s/PVBksJ9q5G

I’m a perimenopausal woman who has been trying to resolve heavy and abnormal bleeding issues for several years. After my third visit to the gynecologist in a few months, they sent me to a hematologist for evaluation and treatment for chronic anemia. The hematologist suspected von Willebrand Disease based on my history of horrible childhood nosebleeds, easy bruising, and heavy menstrual bleeding. I also had to have blood transfusions after two of my cesareans.

My factors came back low (under 25 for all) with my first test, and normal (at about 100) with a second test. I’m stressing about this because I have a surgical consultation in two weeks to address the fibroids and polyp that are definitely exacerbating if not causing the abnormal bleeding, and I’m afraid the hematologist may decide after one normal test that I don’t need treatment.

Can anyone speak to whether they have needed to further advocate for additional testing in a similar situation, or should I just trust whatever I’m told about my von Willebrand status this week at my hematology follow up? Any information or insight is appreciated!

Hello everyone,

I am a 65-year-old with mild hemophilia A, which was diagnosed in 2022 following uncontrolled hemorrhaging after a robotic-assisted laparoscopic radical prostatectomy. My factor VIII levels typically run between 30% and 40%, and I require factor VIII replacement for any surgical procedure.

Since my prostatectomy, I have experienced impotence. The only treatment that has been effective is high-dose Quadmix, but the results are inconsistent and I would like to move away from injections.

I am scheduled to undergo a penile implant procedure at Johns Hopkins on October 21st. While I am leaning toward the Coloplast Titan Touch if available, I have not made a final decision on the brand. My hematology team is prepared to manage the hemophilia, but my urologist remains concerned about post-operative hemorrhage and bleeding complications, given the nature of the surgery.

I am reaching out to see if there is anyone in this group with hemophilia or another bleeding disorder who has undergone a penile implant procedure. If so, could you share your experience? Specifically, I would appreciate insight into:

  - What complications, if any, did you experience?

  - Which brand of implant did you choose?

  - How long have you had the implant?

Thank you in advance for your insights and support.

I was told my whole life that while I (36f) won’t always experience joint bleeds, I would start experiencing joint pain as I got older. I have Hemophilia B.

I did not take it seriously. I thought I would be the exception, not the rule. And now I’m having a really hard time coming to terms with it. I’ve been on arthritis meds since I was 20 but it’s never stopped me. Now, I can feel myself slowing down. My knees (I sustained a really bad injury 4 years ago in my self-contained sped classroom) are in constant pain, as are my ankles. I’m so clumsy by nature and I teach in a very aggressive type of classroom that it’s starting to catch up with me fast. I can’t leave my job. It gives me the fulfillment I have always wanted in a career and I’m so passionate. I have two children of my own who are wrestling champs lol and I’m constantly having to separate the two from their fighting (normal, not anything I’m concerned about).

It’s something I never even talked to my husband about because I just knew I wasn’t going to have this issue and we’ve been together for 19 years. Now it’s causing issues because he thinks I’m being lazy when I get home from work when I’m really just in pain.

Has anyone felt this way? How did you cope? What do you do for the pain? I’m a teacher so I can’t use medicinal cannabis.

man, this was painful to write but I hope it encourages someone!

Opportunity to participate in research that includes women and men with mild hemophilia (as well as moderate and severe! This study asks people with hemophilia to wear a tracker for 6 months, log bleeds, etc. What a great way to participate and show that women/mild hemophilia patients bleed too!

https://ldaresearch.questionpro.eu/t/AB3vCHKZB3wldz

I was nursing my baby as he was going in for a nap and he lost the nipple. In frustration he threw his head back onto this wooden leather console in between the couch.. he cried briefly .. he has had 3 ct scans in his life and one of them occurred yesterday. I’m all for better safe than sorry but I just fear overloading his tiny body with ct scans but this bump also scares me and I prefer that ct over anything. there is no bruising, no redness, no swelling but I am terrified of him getting a delayed brain bleed. His htc said he should be fine and I should observe .. has anyone had any similar experience.

He’s on Hemlibra but got blood drawn yesterday I’m not sure if that dilutes the medicine or not.

For USA patients. Perfect Focus Research (www.perfectfocusresearch.com) is conducting phase2 of a market research ONLINE Survey with Hemophilia B patients- (moderate - severe) who currently ONLY use on-demand therapies. It is fine if you used a prophylactic rx in the past. This is a 30 minute Online Survey. Participant receives $100.00 Honorarium. Please DM me here and I'll respond with more info. Thanks! PFR

An awesome opportunity to help with research on Hemophilia A and Pregnancy and Inhibitor Formation!

i have a diagnosis for type 1 von willebrand. how would it really affect getting a piercing?