Hi all,
My daughter (15 years) has had very heavy and painful periods due to her VWD.
Does anybody out there have any recommendations or ideas for pain relief she can actually take to get any sort of relief from these symptoms?
There are so many medications we know she can't have... but can anybody recommend some she can have or any other pain relief methods?
Thanks,
Di
X
Tylenol 3 helped w the pain ,but not the severe bleeding. Doctors do not like to prescribe it because of the addictive nature. My experiance was that they could not beleive that the pain was as severe as it was… My greatest relief came w my hysterectomy at 28 yrs. Of course this not an option for her. As many of us know, it take strong advocating to have our condition understood. On a visit to the ER, I had a Dr google VWD and read to me about it on the internet. One of our struggles seem to be is that we all react differently and don’t fit clear criteria. I wish you and yor daughter the best. Kat
We have the same struggle. My daughter 13 has been dealing this for 4 years now. We’ve tried Tylenol 3, Valium and most recently Celebrex. The narcotics are a nightmare for someone so young but the pain is just too much sometimes. We also use a heating pad but shes burned her tummy numerous times. Our latest attemp is to use essential oils: melaleuca, cypress and peppermint applied directly to her skin. It completely numbs the area and she can attend school while using it! We’ve also had success with Salon-pas pain reliving patches. There are two types :menthol and capsaicin (hot pepper).
Hopefully you find something that gives her relief!
Thanks to all who post on this subject. It is refreshing to see so much compassion expressed to others facing this seemingly intractable problem that Mothers and daughters have to deal with, especially when some Hematologists seem to not to have an insight into the difficulties the family faces dealing with this complex issue.
I encourage all members who might want to express a good wish or a personal experience to take the time to share.
This issue of period pain and suffering is a constant topic on the Forum and anybody who finds a good, professional article that covers the issue on Dr. Google, please share it. Maybe we all could get a copy to our Hematologist and do some consciousness raising. As a retired lifelong High School science teacher, I am always concerned about issues that affect a student’s mental and physical health. I would appreciate any good references to how parents deal with schools on this issue, also.
I hope we get answers to these problems and thank you all, again, for sharing so openly.
John the elder
Johntheelder said:
Thanks to all who post on this subject. It is refreshing to see so much compassion expressed to others facing this seemingly intractable problem that Mothers and daughters have to deal with, especially when some Hematologists seem to not to have an insight into the difficulties the family faces dealing with this complex issue.
I encourage all members who might want to express a good wish or a personal experience to take the time to share.
This issue of period pain and suffering is a constant topic on the Forum and anybody who finds a good, professional article that covers the issue on Dr. Google, please share it. Maybe we all could get a copy to our Hematologist and do some consciousness raising. As a retired lifelong High School science teacher, I am always concerned about issues that affect a student's mental and physical health. I would appreciate any good references to how parents deal with schools on this issue, also.
I hope we get answers to these problems and thank you all, again, for sharing so openly.
John the elder
My daughter has suffered debilitating cramps that she describes as lightning pain for almost four years. Last Spring her Hematologist recommended Celebrex. The typical dosage is 2x per day but that did not work. Luckily he was able to find a study in England that showed that taking it 3x per day had helped some young women in her situation. It has helped her tremendously and she is able to attend school when before she would have been home. She can not take any narcotics due to allergic reactions and of course no NSAIDS and Tylenol was no help. So this really helped us and I hope that this info helps someone else. Take care of yourselves all of you caregivers out there!
My daughter started running cross country at the same time that her periods started. She said the intense exercise (stretching and running) really helps when she has cramping. She also uses ice packs instead of heat (20 minutes on/ 1 hr off) and that seems to help a great deal too as well as slows that blood flow down slightly.
I don't know if you have considered a birth control pill, or if your daughter is already taking it, but for myself and my 13 year old niece, it works amazingly well. I know it seems strange to prescribe this to a young person, but you need to think of it as a bleeding/pain control issue (which it can be) instead of a pregnancy control issue. I suffered for YEARS, through high school and college, not knowing I had VWD, and it changed my life in my mid twenties went I got a prescription. I stopped missing work/school, etc., which is how it is now working for my niece. A good hematologist should already have suggested this to you. If they didn't, you may need a doctor more well versed in treatments. I know how frustrating it is to find a doctor experienced enough in VWD. Keep looking if you don't have the right one yet.
Hope this helps,
Frances
As Mom of 2 ^^ stated, if she is not already on birth control pills you should consider it. My doctor said that the period pain from someone with VWD is NOT only the normal uterine muscle cramp pain of menstration. As explained to me, women with VWD produce more and larger blood clots than compared to a women without VWD. Much of the intense pain is the pain caused by the blood clots passing through the cervix which, unlike in a pregnant women giving birth, is not dilated. Large clots passing through the small cervical opening can cause debilitating pain requiring some pretty heavy duty pain medicine. Getting the bleeding under control with birth control pills may be the answer. If she already is on it, maybe she needs a different kind of pill. Unfortunately, finding the right BCP is trial and error for every individual. For me, even with BCPs I control the pain by getting ahead of it. The first day of my period I start taking Acetaminophen regularly throughout the day whether I have pain or not. If I wait to the point where I am feeling a lot of pain and need to take something, it’s too late and nothing I do helps. Also, for really bad pain at night I found it helped to take a sleeping pill prescribed by my doctor because being tired the next day only felt like it amplified the pain. It took me a long time to ask my doctor for a script for sleeping pills because I was so afraid of getting addicted to them but honestly it was the best thing I could have done and left me at least be somewhat functional the next day at school and work. I wish you and your daughter the best! If you find a “magic pill” please share with the rest of us who are still searching!
To VWDgirl -
Re: your comment about sleeping pills - you might ask your doctor about Trazodone - I believe it's actually an anti-depressant which I started taking many years ago because I was depressed and just couldn't seem to fall asleep and/or stay asleep. I don't believe it's used much now as an anti-depressant but my psychiatrist said if that helps my sleep (I still have great difficulty falling asleep), he will continue writing prescriptions for me. It is, thankfully, not addictive. He gives me 150 mg. pills but I find that 75 mg. is enough to help me fall and stay asleep for the night. I met someone who was taking 200 mg. at night and she said it didn't affect her at all so I think there's a lot of variation in individual responses to this. It is a rather old drug so I don't think it costs as much as the newer sleeping pills either. I think it just depends on whether it works for you. Hope that helps.
I know this is going to sound terribly negative and I don't mean to be rude but I took Trazodone for sleeping problems eight years ago and it was the worst three months of my life. I felt like "Alice down the rabbit hole" about an hour after taking it and had the weirdest most disturbing dreams. This is not something I would ever take again. I have had trouble sleeping and staying asleep all of my life period or no period. Much later on I was prescribed Clonazepam which works very well when I need it. Both of these drugs are pretty heavy hitters and I would hesitate greatly before allowing my daughter to try anything like it. There are lot's of other choices out there. My daughter also has trouble sleeping especially before and during her periods. Luckily for her Tylenol PM works well most of the time.
I understand your concern. When I was working with a psychiatrist to find medication(s) that would help with the depression and sleeping problems, I went through trials of numerous medications and the psychiatrist would see me once a week or once every two weeks to find out whether I found the current medication helpful. If it was giving me side-effects, I would call him, he would tell me to stop it and see me sooner to discuss another medication. He told me it wasn't a good idea to keep on with a medication, no matter how successful it had been in clinical trials, because it's the individual's reaction that is most important and if it doesn't work for me, not to stay on it. He also said that's the idea of a "trial of medication". It did take a long time before I found the combination of drugs which worked for me and it is important to work with a physician who operates like that - i.e., sees you regularly to find out whether the medication is effective and if not, willing to try more until the right medication or combination of medications is found. Unfortunately, I've found the idea of "one-size-fits-all" in medication is the way a lot of doctors operate and it doesn't do their patients any good.
onemom said:
I know this is going to sound terribly negative and I don't mean to be rude but I took Trazodone for sleeping problems eight years ago and it was the worst three months of my life. I felt like "Alice down the rabbit hole" about an hour after taking it and had the weirdest most disturbing dreams. This is not something I would ever take again. I have had trouble sleeping and staying asleep all of my life period or no period. Much later on I was prescribed Clonazepam which works very well when I need it. Both of these drugs are pretty heavy hitters and I would hesitate greatly before allowing my daughter to try anything like it. There are lot's of other choices out there. My daughter also has trouble sleeping especially before and during her periods. Luckily for her Tylenol PM works well most of the time.
Thank you all for your support! She has always felt like the only person on the planet going through this. Heartbreaking stuff...
She has already tried several pills and they are not helping much at all to reduce the bleeding time. I think the clots are the main concern regarding her pain. Her period doesn't seem to truly stop and one of her doctors thinks that she may even be bleeding not just as she menstruates but also as she releases each egg during the ovulation part of her cycle, which might explain the never ending period.
It is interesting to not how many others have disrupted sleep cycles due to the heavy periods caused by the VWD. My daughter never gets a good night sleep. So with a combination of a lack of iron and no quality sleep she is really suffering. She wants to go into medical research when she leaves school and study VWD further to find relief for herself and others. Nobody seems to know much about it and the awful effects it has on young girls.
Educating her teachers in high school is also a big hurdle. I think many of them don't understand that this is not "just a period" and that, yes, she may need to go to the bathroom several times. She has fainted at school on many occasions and fell asleep in one class when her iron was really low. It is really embarrassing for her.
You are all amazing advocates for your children and for VWD. Thank goodness we found this site! Thanks so much for caring! XXX
GM to all,
This has been one of the best discussions on this site. You all know lots of issues that bear on this subject, both medically and emotionally and you share them along with your approaches to this seemingly intractable problem. That is what this site is all about and you are making it work.
From medical approaches, physical exercise, technical explanations about pain, surgical solutions, ovulation and clotting consequences, drug side-effects and proper approaches to drug administration and supervision, each of you has provided experience that needs to be expressed, generally, to the medical profession in a single message underlining the broad spectrum approach the Doctor needs to take. A larger frame of reference for the Doctor’s decision making progress is clearly needed.
I am going to find out how to get this info published as a guest editorial or lengthy letter to the editor in major Hematology professional journals. I think, with suitable anonymity precautions, a description of what the “front line” looks and feels like to the involved families would be a worthy effort to help the medical profession see the whole picture more clearly. I’ll bet LANCET, JAMA , NEJM and other more specialized Hematology journals just might publish a collection of personal anecdotal experiences, including some of the professional practices that need to be changed. We VWD patients are not lone individuals on desert islands suffering in isolation. As a group we can effect change that will benefit our families.
Give me some feedback if you think this is a worthy cause and if you have any suggestions to improve on my sketchy idea presented above!
John the elder
My daughter has VWD II and is currently taking birth control pills 2 times a day to prevent the period from coming in. I do not like her taking the pills but it allows her to have a better quality of life. Her last period was about a year ago and it was too much blood loss for both of us to deal with despite aggressive humate p infusions. You may want to consider discussing birth control pill option with her hematologist. I would also encourage you to talk to the school principal about her medical needs as well. Be persistent and get their attention. I know some treatment centers would send a nurse or social worker to school to help educating others. Over the years, I have learned to “Plan for the worst and hope for the best”. If she is fainting at school and falling asleep from blood loss, it’s a serious concern.
Good luck and I hope things improve for both of you soon.
Johntheelder said:
GM to all,
This has been one of the best discussions on this site. You all know lots of issues that bear on this subject, both medically and emotionally and you share them along with your approaches to this seemingly intractable problem. That is what this site is all about and you are making it work.
From medical approaches, physical exercise, technical explanations about pain, surgical solutions, ovulation and clotting consequences, drug side-effects and proper approaches to drug administration and supervision, each of you has provided experience that needs to be expressed, generally, to the medical profession in a single message underlining the broad spectrum approach the Doctor needs to take. A larger frame of reference for the Doctor's decision making progress is clearly needed.
I am going to find out how to get this info published as a guest editorial or lengthy letter to the editor in major Hematology professional journals. I think, with suitable anonymity precautions, a description of what the "front line" looks and feels like to the involved families would be a worthy effort to help the medical profession see the whole picture more clearly. I'll bet LANCET, JAMA , NEJM and other more specialized Hematology journals just might publish a collection of personal anecdotal experiences, including some of the professional practices that need to be changed. We VWD patients are not lone individuals on desert islands suffering in isolation. As a group we can effect change that will benefit our families.
Give me some feedback if you think this is a worthy cause and if you have any suggestions to improve on my sketchy idea presented above!
John the elder
I that's a great idea and I would gladly give my consent to any reputable medical journal. This discussion has proven what many of us already know. No Doctors or even Hematologists know how to handle this and it needs to stop being ignored!
Johntheelder said:GM to all,
This has been one of the best discussions on this site. You all know lots of issues that bear on this subject, both medically and emotionally and you share them along with your approaches to this seemingly intractable problem. That is what this site is all about and you are making it work.
From medical approaches, physical exercise, technical explanations about pain, surgical solutions, ovulation and clotting consequences, drug side-effects and proper approaches to drug administration and supervision, each of you has provided experience that needs to be expressed, generally, to the medical profession in a single message underlining the broad spectrum approach the Doctor needs to take. A larger frame of reference for the Doctor's decision making progress is clearly needed.
I am going to find out how to get this info published as a guest editorial or lengthy letter to the editor in major Hematology professional journals. I think, with suitable anonymity precautions, a description of what the "front line" looks and feels like to the involved families would be a worthy effort to help the medical profession see the whole picture more clearly. I'll bet LANCET, JAMA , NEJM and other more specialized Hematology journals just might publish a collection of personal anecdotal experiences, including some of the professional practices that need to be changed. We VWD patients are not lone individuals on desert islands suffering in isolation. As a group we can effect change that will benefit our families.
Give me some feedback if you think this is a worthy cause and if you have any suggestions to improve on my sketchy idea presented above!
John the elder
Tell her she is not alone. I’ve gone down the hall to the bathroom inserted an ultra absorbent tampon and large overnight sized maxi pad, (all after sitting on the toilet for 20-30 minutes of bleeding), left the bathroom and before I got back to the room at the end of the hall I had already bled through my tampon, pad, underwear and jeans. Sorry if TMI but I’m sure there are lots of women here with the same story. To say you have “heavy” bleeding as defined by the medical profession and makers of sanitary products is an understatement.
I’m curious as to why her doctor thinks she is bleeding while ovulating because if she is on the pill it prevents ovulation and no egg is released. Has she been evaluated for uterine/cervical polyps or endometriosis which can also cause continuous bleeding? Also, her iron levels must be pretty low if she is fainting and falling asleep. Have you considered asking about iron infusions? She may be bleeding out more iron than she can ever eat in her daily diet even while taking oral supplements. Some people, like myself, don’t absorb iron well from their digestive system and need to get iron directly injected in the blood stream. My insurance has always covered this. Some people have an allergic reaction to getting getting iron this way so they perform a small test dose first. You get your energy back almost immediately compared with trying to get your iron levels up over a period of months with diet and supplements.
Also, this is purely anecdotal from personal experience but I have changed manufacturers of my birth control pill and the same prescription filled with the same pill from a different manufacturer has given me completely different results. I don’t know if anyone else has experienced this or why it would happen. I guess it’s like people who find Tylenol brand works better than the stores’ generic version even though they have the same active ingredients???
Hang in there and have faith she will find a treatment that will work for her!
di said:
Thank you all for your support! She has always felt like the only person on the planet going through this. Heartbreaking stuff…
She has already tried several pills and they are not helping much at all to reduce the bleeding time. I think the clots are the main concern regarding her pain. Her period doesn’t seem to truly stop and one of her doctors thinks that she may even be bleeding not just as she menstruates but also as she releases each egg during the ovulation part of her cycle, which might explain the never ending period.
It is interesting to not how many others have disrupted sleep cycles due to the heavy periods caused by the VWD. My daughter never gets a good night sleep. So with a combination of a lack of iron and no quality sleep she is really suffering. She wants to go into medical research when she leaves school and study VWD further to find relief for herself and others. Nobody seems to know much about it and the awful effects it has on young girls.
Educating her teachers in high school is also a big hurdle. I think many of them don’t understand that this is not “just a period” and that, yes, she may need to go to the bathroom several times. She has fainted at school on many occasions and fell asleep in one class when her iron was really low. It is really embarrassing for her.
You are all amazing advocates for your children and for VWD. Thank goodness we found this site! Thanks so much for caring! XXX
I used to work for the school system here in Hawaii and we had school nurses assigned to each complex. They regularly meet with the school health aides at each school and can provide pertinent information to school staff re: students with special health needs. For instance, if there is a diabetic child or a child with severe allergies. I would check with the school to find out if there is any such resource available to your child's school and if so, see if you can meet with them to describe what problems have arisen and ask if they can work with the staff at your child's school. They will need permission to speak with your child's doctor but it helps to have a health professional who understands the situation and can advocate for appropriate educational modifications for your child when needed.
May said:
My daughter has VWD II and is currently taking birth control pills 2 times a day to prevent the period from coming in. I do not like her taking the pills but it allows her to have a better quality of life. Her last period was about a year ago and it was too much blood loss for both of us to deal with despite aggressive humate p infusions. You may want to consider discussing birth control pill option with her hematologist. I would also encourage you to talk to the school principal about her medical needs as well. Be persistent and get their attention. I know some treatment centers would send a nurse or social worker to school to help educating others. Over the years, I have learned to "Plan for the worst and hope for the best". If she is fainting at school and falling asleep from blood loss, it's a serious concern.
Good luck and I hope things improve for both of you soon.
This comment regarding trouble absorbing iron caught my eye. Just this past week we were told that my daughter was deficient in vitamin D3. This is after six months of being a a diet high in D3 and 6000 units a day in supplements. We are seeing her primary care Dr who is an Internist tomorrow hoping to find out what to do about this. We were told it could be hormonal, glandular, or a whole host of other things. My daughter feels extreme fatigue, painful joints and bones. She says her bones actually hurt. She catches very frequent viruses especially upper respiratory and often says she feels sick but there's no apparent reason for it. She spends at least 2 day and up to 6 in bed during her period. No school at all during a bad bleed. It's not worth it she would spend the whole day in the bathroom dying of embarrassment. I'm so glad this discussion is going on and that I'm learning a lot!