[Code]

For the last 12 weeks I have been bleeding badly, 4 weeks ago I went to the hospital about it as it got serious. For the last month I have been in hospital 3 times and have seen many different doctors who all keep giving me the brush off. Of the 12 weeks I have had a whole two days of no bleeding, it is beyond a joke. I tried calling my doctor on Monday but she was booked up until today, just got home from seeing her, she took my blood pressure and it was low, then dropped even lower while standing up. She is worried/angry that all these other doctors don't seem to know what to do. It is to the point where my sister has to do everything for me, including helping me out of the car :( I now have another appointment with the gyno this afternoon then go back to see her in the morning. I have von willebrands disease and pcos. Has anyone ever had any experiences like this?

This post has been edited by Code: 22 February 2012 - 07:36 PM

[ECUBitzy]

That sounds terrible, Codie. I am so sorry to hear you're going through this. I have no experience, but PLEASE keep us posted.

[eagleswings216]

I haven't had that issue personally, but would birth control pills help?? I do have PCOS and the bc keeps me regular, minimal bleeding, etc.

[EMMom]

I haven't had it but have taken care of women with it in the emergency department. I am hoping your hemoglobin has been checked to make sure you aren't too low and you are on iron supplementation?? If your hemoglobin isn't low the fatigue may be due to something else. Otherwise, in the emergency department with women having heavy, dysfunctional uterine bleeding I usually call the OB/GYN's and they suggest a few things. Have they tried either a standard birth control or a short burst of progesterone? You could also try a mirena IUD which have been indicated to help with dysfunctional bleeding. If they have tried those and they fail there are surgeries such as uterine ablation or hysterectomy however usually it is reserved for women who are done having children . Hang in there and hopefully a few of these things have been tried already.

[Code]

eagleswings216, on 23 February 2012 - 11:18 AM, said:

I haven't had that issue personally, but would birth control pills help?? I do have PCOS and the bc keeps me regular, minimal bleeding, etc.

Birth control hasn't helped. When I first ended up in the ER they put me back on the pill, 4 times a day, even then it didn't help.

EMMom, on 23 February 2012 - 11:37 AM, said:

I haven't had it but have taken care of women with it in the emergency department. I am hoping your hemoglobin has been checked to make sure you aren't too low and you are on iron supplementation?? If your hemoglobin isn't low the fatigue may be due to something else. Otherwise, in the emergency department with women having heavy, dysfunctional uterine bleeding I usually call the OB/GYN's and they suggest a few things. Have they tried either a standard birth control or a short burst of progesterone? You could also try a mirena IUD which have been indicated to help with dysfunctional bleeding. If they have tried those and they fail there are surgeries such as uterine ablation or hysterectomy however usually it is reserved for women who are done having children . Hang in there and hopefully a few of these things have been tried already.

I am on iron supplements as my iron was 4 last time it was checked, we have tried two different types of birth control, provera which was the progesterone as well as mefenamic acid and tranexamic acid. I was meant to go into surgery two weeks ago to get a d&c done but they canceled it as I would have continued bleeding.

[DeniseT]

Code, on 22 February 2012 - 07:34 PM, said:

For the last 12 weeks I have been bleeding badly, 4 weeks ago I went to the hospital about it as it got serious. For the last month I have been in hospital 3 times and have seen many different doctors who all keep giving me the brush off. Of the 12 weeks I have had a whole two days of no bleeding, it is beyond a joke. I tried calling my doctor on Monday but she was booked up until today, just got home from seeing her, she took my blood pressure and it was low, then dropped even lower while standing up. She is worried/angry that all these other doctors don't seem to know what to do. It is to the point where my sister has to do everything for me, including helping me out of the car :( I now have another appointment with the gyno this afternoon then go back to see her in the morning. I have von willebrands disease and pcos. Has anyone ever had any experiences like this?

oh man, this sounds awful. I haven't heard of von willebrands disease, so I'm not familiar with the symptoms. And I've never had heavy bleeding like that, but I'd imagine that could do a lot to wear you out, and deplete your body. I'm responding to your post because I have had symptoms like this and they were at their worst when I was going through an IVF FET and was on estrogen (a lot) and then was taken off of it. The withdrawl period was like you described - very exhausted, I felt dizzy and faint, I'd black out when I'd stand up and start to walk. The fatigue was indescribable. I also had my BP checked and it did what you described - was low, and got even lower when I stood up. It went on for weeks until I finally took provera to bring on a normal period. So for me it was a definite hormone problem. I still have periods with the extreme fatigue and wooziness at times, it just comes out of nowhere. And I still think I have some sort of hormone imbalance that was never really taken seriously. I have PCOS in my infertility specialist's chart, but it was never a true diagnosis since I don't really have the cystic ovaries and the blood tests never really showed conclusive results. But I do have ovulation problems, so I attribute it all to hormones. It sounds like that could be the issue with you too. But if the birth control pill doesn't help, I'm not sure what else they can do for you. I know diet can play a big role, I was told to stay away from sugar (but that's nearly impossible for me!) But there might be something to it because one of the attacks that came over me after I went off the estrogen hit me right after I had a big piece of pie with cool whip. Isn't there another form of medication they sometimes prescribe for patients with PCOS - metformin or something? Maybe there's something other than the pill that can help get you regulated? Have you seen an endocrinologist?

[Code]

DeniseT, on 23 February 2012 - 12:14 PM, said:

oh man, this sounds awful. I haven't heard of von willebrands disease, so I'm not familiar with the symptoms. And I've never had heavy bleeding like that, but I'd imagine that could do a lot to wear you out, and deplete your body. I'm responding to your post because I have had symptoms like this and they were at their worst when I was going through an IVF FET and was on estrogen (a lot) and then was taken off of it. The withdrawl period was like you described - very exhausted, I felt dizzy and faint, I'd black out when I'd stand up and start to walk. The fatigue was indescribable. I also had my BP checked and it did what you described - was low, and got even lower when I stood up. It went on for weeks until I finally took provera to bring on a normal period. So for me it was a definite hormone problem. I still have periods with the extreme fatigue and wooziness at times, it just comes out of nowhere. And I still think I have some sort of hormone imbalance that was never really taken seriously. I have PCOS in my infertility specialist's chart, but it was never a true diagnosis since I don't really have the cystic ovaries and the blood tests never really showed conclusive results. But I do have ovulation problems, so I attribute it all to hormones. It sounds like that could be the issue with you too. But if the birth control pill doesn't help, I'm not sure what else they can do for you. I know diet can play a big role, I was told to stay away from sugar (but that's nearly impossible for me!) But there might be something to it because one of the attacks that came over me after I went off the estrogen hit me right after I had a big piece of pie with cool whip. Isn't there another form of medication they sometimes prescribe for patients with PCOS - metformin or something? Maybe there's something other than the pill that can help get you regulated? Have you seen an endocrinologist?

Von Willebrand factor helps blood platelets clump together and stick to the blood vessel wall, which is necessary for normal blood clotting. It does wear me out, considering the gyno I just seen told me the average girl only loses a tablespoon of blood the whole cycle where I am losing so much more. He also got back results from a glucose tolerance test, which results "made me a unique case" I have insulin hypo________ something and I don't ovulate. He actually had to "call a friend" to ask advice on my case while I was sitting there - trying not to fall asleep. I see a dietiation my BMI is normal. I was given two new scripts, a blood test, daily emails to him and weekly appointments, which is good because it seems like he wants to get things sorted! Considering last time it was basically come back in 2 months and do the GTT. No, I don't know what an endocrinologist does sorry. Exhausted, it is 4:30pm here and I am already wanting to go to bed. Back to my doctor in the morning.

[becasquared]

Codie - an endocrinologist handles diseases of the endocrine system. So diabetes/true hypoglycemia, PCOS, girl hormonal issues, thyroid issues, obesity/underweight if they are attributed to hormones and not just abusing food, certain benign brain tumors in the pituitary cause major hormonal issues, are all things an endocrinologist would see. The Von Willibrands would be seen (in the USA) by a hematologist (one who specializes in diseases of the blood, like anemia, von willibrands, other clotting disease in boys.)

Did he say if you have hyperinsulinemia? That is too much insulin in your blood causing your blood sugars to run low. I think you should request to see an endocrinologist, like today.

[Code]

Thank you for explaining what they do! That is interesting! I seen a hematologist last week who was very useful - her solution was a blood test in a month and come back in 4 months. ie not helpful at all! Was a waste of time actually and didn't make my doctor happy when I told her today what happened.

Yes I believe that is what he called it, the GGT results were 400 odd at a hour then 1200 odd at two hours. I have an appointment at 11am today so will talk to her about it!

1:30am in pain, exhausted and unable to sleep such a good combination. :(

[EMMom]

Have they talked about von willebrand specific therapy such as DDAVP or desmopressin? I know that is a therapy for helping people with von willebrand's clot, however I have never given it myself. That would be a possibility the hematologist would likely have to be the one to give you. What was the hematologist testing? Has the von willebrand's not been confirmed yet?

[Code]

I was confirmed with von willebrands two years ago, they will be testing to see what type it is as my old doctor never checked, though he checked what type my mum is. Mum is type 2. I was given some form of clotting factor through a drip two weeks ago when i was meant to go into surgery. My doctors not impressed with the hematologist from last week as she didn't do anything or say anything other then come in for a blood test then come back in 4 months. She was also meant to send the doctor a report of the appointment but never.