Heavy periods

Does anyone’s family just not get heavy periods? My hubby and his parents are upset that I put our oldest(she’s 12) on depo. Her hemotologist suggested the pill. I brought up depo as option because in my experience if you miss any days,it’s not like you took anything at all. One shot every 3 months is easier (and cheaper due to our insurance). Plus she already takes enough pills a day already. They don’t seem to understand how embarrassing it is to have to come home everyday in your PE clothes when your on your period because you’ve bled all over the other ones. Her damn periods are averaging 10 to 12 days plus she bleeds after PE and dance almost everyday. Also being “the selfish bitch” that I am, I’M TIRED OF TRYING TO WASH THE BLOOD OUT OF EVERYTHING. Excuse me but I was already buying peroxide by the gallon and oxyclean is my best friend. She’ll tired almost all the time on her period,pale as a ghost and anemic. I’m tired of buying her underwear ( 34 pairs in lasts 2 months) and they’re all ruined. She’s so embarrassed about it that she changes in the bathroom stall. She only has 3-4 nice ones left. My mother-in-law that she should just deal with having a heavy period. Let’s see her deal with cleaning the bed,sheets,carpet,floors,shower and clothes for a few times to see how see likes it. And yes my daughter bleeds that bad. And that’s without adding in the nosebleeds and other spontaneous bleeds that she gets and they’re more often now. Tired of house smelling like blood for2 weeks every month. My poor daughter can’t even take a bath to help with cramps on her period because the water ends up looking like she slit her wrists. And then hubby complains that the bathroom is disgusting. Anybody have any advice on how to deal with a family that just doesn’t get it?

Hello,

Im just 16 going on 17 and I'm the same as your daughter, I got diagnosed with vWD just under a year ago. I also am Anemic and suffer with Hemophelia. I feel so sorry for your daughter because I know what its like to live with such a problem. Ever since I started my periods at aged 11 they have been very very heavy and for the whole time I am on my period I cant do anything from the day befor I am in such horrible pain, with Vaginal cramps and Stomach cramps. I can hardly keep food down and I have to change my pad more than once every hour. I know how horrible it is for your daughter and I cant explain how bad it must be for you as such a caring Mum. I have no idea why your husband or Mother In Law dont understand, it is a horrible thing to go through especially at the age of 12, just hitting puberty is bad enough but when you have such a bad problem you get it 10x worse than your friends. I now take Tranexamic Acid and they help me so much they make your blood clot so you dont bleed for so long and they help with the cramps. I hope I am helped if your daughter would like to talk to me then here is my email. ■■■■■■■■■■■■■■■■■■■■■■■■■■■

Scarlett x

I’ll give it to her. It totally sux. When I was her age I cramped so bad for 3 days before I started that I had prescriptions for muscle relaxants and pain pills. Then it was like turning on the faucet, I would bleed so bad for 3-4 days. I stopped going to school when I was on my period in the sixth grade because it was so embarassing. I was always bleeding thru my regular clothes by 10 or 11 then thru my PE clothes by 1 or so. Stupid teachers were always telling me that I should’ve changed between classes even when I was late to class because I did. Then having to either walk home or to my mom’s work was always fun. Always. Getting stopped by police and asked why I wasn’t at school. The only good thing was leaving blood all over the back seats when they put me in to take back to school and then to my mom’s work when school said I was allowed to be out. The cop cars back then had that off white fake leather that you could never get clean. I made sure to slide across the back seat to get in and out. At least Mom always had a spare pair of scrubs and a shower at her work. She worked in surgery at the hospital back then.

Ehhhhhhhhhh! I feel her pain! I have VWD Type I and I feel like my period is my worst problem. I got my period for a couple of cycles when I was about 11 or 12 and then it stopped and started again when I started high school with a vengeance. My period is mentally and physically draining. I always had and still do have such bad pain that it radiates down my legs to the point where it hurts to walk. I am always weak and tired during my period and I have to be careful since anemia runs in my family. I remember bleeding through clothes and coming home to my mom crying because I was not only in pain, but extremely embarrassed. It helps to pack some extra clothes, but it also helped me to wear a tampon and an overnight pad to buy me a little extra time (since teachers sometimes refuse to let you go to the restroom and with a bleeding disorder you need to change a billion times!). So embarrassing, but some other tricks I used were to put an extra pad on the butt of my underwear when I laid down, use multiple layers of sheets so I would not ruin my mattress, and lay on one of those hospital pads (kind of like a puppy housebreaking pad) to try to prevent ruining my sheets when I slept (and keep my mom from washing all the time). Out of all the days I missed in school, it was always due to my period. Once I entered college, I could no longer let my bleeding affect my life (things came to a grinding halt when I got my period), so I started taking birth control pills. My period went from about 2 weeks of heavy bleeding to one week of moderate-heavy bleeding. It has worked for the past couple of years, but I have found that I am now spotting for about 1-2 weeks and then getting my painful period after that. It's not fun to have a period for 3 out of 4 weeks and then getting it all over again! Now that I have actually been diagnosed (at 21 years of age) I am hoping my doctor can recommend something that will work better for me.

Definitely try out the tricks I mentioned earlier if you haven't tried those already (yes, they are a bit humiliating, but what can you do?!) Also, invest in a heating pad if she does not have one already. My heating pad is my best friend when I have cramps. As for your family, I would find the politest way to tell your mother-in-law to shut it. When you have VWD it's more than just a heavy period, you cannot "just deal with it". Nobody really knows how much pain and disgust you feel. If depo shots help your daughter, then I say definitely go for it because her well-being is the number one priority! I think your husband should try to be more understanding as well! Instead of worrying about the state of the bathroom, tell him to worry about the state of his child! Since my mother and grandmother also experienced heavy periods (they were never diagnosed, but since it's heritable, it's kind of assumed this is where I got it from), I have always had someone in my life who had been in a similar position. I guess all you can really do is explain the disease and tell people that it's not just something you deal with and if they are not going to be understanding and helpful then they should just mind their own business!

Hi my daughter also is twelve and she has had a terrible
Time dealing with this as well. I know all to well about the clothes and
Sheets And under clothes it can be a pain my daughter uses
pads everyday its been costly but What can we do.Just wanted to
Say your not alone and my daughter would love to conversate with
someone that can relate

Only thing depo did for her was to delay her next period for 2 weeks. I wish she was like me. Depo completely stopped mine. Peroxide and oxyclean are my friends. I wish it was that easy dealing with schools.

The pill might be an option, but I did have to try a few different ones to find one that works well for me. It might be a good idea to wait until school breaks, like summer holidays to try out different medications too - for me, some made things worse, others just had no effect.

I wish that my Kaylie would act like she’s like she has VWD 1,like the doc says she has. Unfortunately, all bets are off because she has 2 type 1 parents. She doesn’t have enough, what she has doesn’t work right and she’s doesn’t have enough factor VII or VIII. I can never seem remember which one it is. Stimate/amicar works on paper but doesn’t do crap in real life most of the time.

We’re on break. I’m tired of all the pills. I just took her off all of her meds a couple of months ago. I’m trying to force the schools into giving her an IEP. She has ADD,VWD,dsylexia,digestive problems,eczema and has to take meds for her moods too. I’m pissing off all the teachers, nurses, and office staff. Not to mention the janitors too. And I actually am enjoying their discomfort. They’ve screwed her over and now they’re paying for it. I know it’s petty, but it is pretty fun. I’m tired of doing everthing for the schools to make it easier for them and Kaylie getting screwed over. Not to mention my dwindling checkbook. We have to pay out of pocket for her tutoring. Insurance won’t pay for anything because the school is supposed to do it. That is unless she has a head injury. She won’t need school if she gets a head injury. I’m proud to say that she went from B’s and C’s to F’s. She got 2 B’s in dance& PE, a D in science, and 3 beautiful F’s in math and English. English is 2 grades, writing and lit. They can’t say that all her crap doesn’t affect her grades anymore. Ha ha. That was the school’s reasoning for her not to have an IEP. Her behavior in class got worse and she missed tons of days due to bleeding. Let’s see what they have to say now.

Wow, thats a lot to be dealing with, for both you and Kaylie. Have you thought of going over the school’s head? To the school board, or the education department?

I was fortunate enough to get a scholarship to a private school here in Australia when I was still in primary school, before my periods started. The environment at my school was much more supportive. My teachers, upon finding out about my condition, gave me extra consideration with assignment and test due dates etc.
I never talked to him about it, but I’m pretty sure my principal would’ve taken treatment of a student (like what you’ve described your daughter has been through) very personally and would’ve made sure I was taken care of. But my mum is a bit like you - she would’ve fought tooth and nail to make sure I was being treated fairly by the school if it had’ve gone the other way.

Your daughter is very lucky to have you, and even if she doesn’t say it, I’m sure she knows how lucky she is to have a supportive mum like you.

Thanks, I try. We’re starting a new school in the fall. I’m hoping this one will be better. My other daughter is starting middle school and it looks like she might be getting her period soon too. I hope she’s not as bad as Kaylie but I have a feeling she might just be worse. She doesn’t want to grow up and is still in denial about her VWD. She’s developing rapidly but is perfectly happy being a little girl. Hate to tell her that she can’t stop it from happening. With 2 girls there hopefully they’ll get it, but I’m not holding my breath. Unfortunately if they don’t listen, my only option is taking them to court. And they’re not going to school til I get IEPs for them. The school can threaten me all they want, I’m not giving in this time. Let them explain to a judge why they won’t give them the IEPs. Bleeding disorders are considered disabilities by the federal government. And it’s against the law to discriminate my kids under IDEA and the ADA.

Good on you for standing up for your daughters. Best of luck with the new school, I hope they are more responsive. All it takes is for one person at the school to understand and it’ll make your lives easier.

Hia,

I have type 3 and had 'the heaviest periods in England' according to my Gynaecologist!

I actually think it's very sensible that she has Depo. Does she have Amicar or Lysteda aswell? What type is she? You know the old fashioned way of getting the blood out of everything(takes longer but pretty effective and no cost) get one of those big old buckets with lids that women used to soak terry toweling nappies in and soak the bloodied clothes in plain old cold water for 24hrs9in the garage or something) then put through a cool wash with normal powder in and it will all come out. Also buy her black knickers! When she fancies a bath get her to insert a super plus tampon immendiately before bath and be in and out of bath in 20 mins and all should be fine and not look like shark attack ;). I also would invest in a plastic / rubber mattress sheet and then put a fabric / washable mattress protector over it(just to make it more comfortable) for that time of the month/all the time if she bleeds heavily randomly.

And I think your family need 'man up', difficult enough for the girl and you without extra judgements from them. She'll feel mortified as it is.

xxx

Oh and at night I used to use 3 maternity towels or 3 super night-time towels joined together or nappies and super plus tampax and sleep on a doubled up red bath sheet!

x

I feel the pain... mine were horrendous, took forever for anyone to actually realise how heavy they were.

Luckily though the worked out that I was ending up very anemic due to the combination of nose bleeds and my periods. So I went on the pill to stop them, we just increased the dosage to stop break through bleeds. That worked for ten twelve years, until suddently it stopped working all together. At that point I had the mirena IUD inserted and it is wonderful, have had a period at all...

By the time they put me on the pill I was bleeding for a fortnight straight with a fortnigtht off... it would range between one pad an hour to three pads or more in an hour... I had towels of nose bleeds, and towels in my bed for periods. The cramping was horrible...

These days I dont have any problems , I have a few days of spotting every five years when we change the mirena over but that is it.

I would be telling the family to harden up, it is hard enough being a teenage girl without having a bleeding disorder.

She deserve nothing but their support and respect, and she is dealing with issue they have probably never considered.

unless they have dealt with it themselves, they do not understand and they have no right to judge and should but out it.

Things like that put the bleeding into perspective don't they? I remember being told by my GYN mine were the worst she'd every treated, and she primarily deals with women with endomitriosis.

Nellie said:

Hia,

I have type 3 and had 'the heaviest periods in England' according to my Gynaecologist!

I actually think it's very sensible that she has Depo. Does she have Amicar or Lysteda aswell? What type is she? You know the old fashioned way of getting the blood out of everything(takes longer but pretty effective and no cost) get one of those big old buckets with lids that women used to soak terry toweling nappies in and soak the bloodied clothes in plain old cold water for 24hrs9in the garage or something) then put through a cool wash with normal powder in and it will all come out. Also buy her black knickers! When she fancies a bath get her to insert a super plus tampon immendiately before bath and be in and out of bath in 20 mins and all should be fine and not look like shark attack ;). I also would invest in a plastic / rubber mattress sheet and then put a fabric / washable mattress protector over it(just to make it more comfortable) for that time of the month/all the time if she bleeds heavily randomly.

And I think your family need 'man up', difficult enough for the girl and you without extra judgements from them. She'll feel mortified as it is.

xxx

Is there any type of support group for girls with this disease?

Kika

You’re in it! Plus, haemophilia foundations internationally support all people with inherited bleeding disorders, not just haemophilia. I joined my national and state organisations about 18 months ago. You should be registered with your local haemophilia treatment centre as well and the two should inter-refer. But still, girls tend to be a bit of a rare breed within haemophilia foundations, but I’m starting to build a network of women and girls I can turn to for support and help out when they need it.



Kika said:

Is there any type of support group for girls with this disease?

Thanks. Just wish my daughter could talk to another kid that is dealing with this too.

Jenna said:

Kika

You're in it! Plus, haemophilia foundations internationally support all people with inherited bleeding disorders, not just haemophilia. I joined my national and state organisations about 18 months ago. You should be registered with your local haemophilia treatment centre as well and the two should inter-refer. But still, girls tend to be a bit of a rare breed within haemophilia foundations, but I'm starting to build a network of women and girls I can turn to for support and help out when they need it.



Kika said:

Is there any type of support group for girls with this disease?

I'd definitely get in contact with your local haemophilia foundation and treatment centre then. They'll know others in your area with a similar profile and can look at putting you in contact. While my state foundation here in Australia is very small, I know of other state/national organisations around who have the funds to do girls only camps/etc, which allows girls to connect in a 'safe place' away from the boys.