Hallo,
I'm new at this group but I'm not new concerning von Willebrand. I was diagnosed seven years ago after i had heavy nose bleeds that couldn't be stopped by normal means. I have type 1 moderate and I've been coping through different health issues. The reason i joined this group is one of them because i need your advice, I'm 30 years old, married and no children (hoping to have soon
!!!)
My problem is gynecological, I experience the past few months a lot of problems when I'm ovulating, when the follicle breaks for the ovule to fall i bleed in my abdomen and i experience a lot of pain. I end up at the hospital were they transfuse me with factor and i I'm given painkillers.
My problem now is that my period was late and at the time when i should have my period i had a lot of pain in my lower abdomen so i went to the hospital, there i was told after an ultrasound that i had some free liquid in my abdomen so to be safe i was transfused with factor and while the doctor was examining me i got my period. Eight days later my period finished but the day after (in between the two days i was cleared of any blood) i got brown spotting, today four days later I'm still spotting and at one point it was pinkish so i called my doctor, once more i had an ultrasound done and everything seemed fine according to the doctor but he said that if it continues i have to check my thyroid (???) and we might need to scrape the uterus because he thinks i might still have a thick uterus layer that it was not shed with my period so we need to remove it!!! I was socked with that, please let me know what you think. Have in mind that I'm not pregnant (i had a blood test done).
Thank you for your time, i know i wrote a lot and also please excuse my English (I'm from Greece)
Have a nice day
Aspasia
Hello Aspasia,
Welcome to the group. I have Von Willebrand type 1, moderate, also. I wasn't diagnosed until I was fifty years old. Prior to that i had problems with bleeding, also irregular and very long bleeding periods. I never did conceive or end up having children but I was divorced and not trying for many years, so I do not have direct experience with a pregnancy or delivery.
I have had a D&C(removal of thickened uterine lining) and that went well, since I had the ddavp infusion prior and the Amicar after the surgery. I would warn you not to let the anesthesiologist give you any anti-inflamatory during the procedure. The one that did my anesthesia gave me toradol and my hand bled afterward. He was very wrong to do that. But they can be stubborn and misinformed about von willebrand. There is a test called trans-vaginal ultrasound that can measure the thickness of your uterine lining. This should be done to determine what is present in the uterus.
This following website advises you about pregnancy and von willebrand. http://www.hemophilia.ca/en/bleeding-disorders/von-willebrand-disease/living-with-von-willebrand-disease/conception--pregnancy-and-childbirth/
Please read this and also you might want to go to a hospital that has a special Hemophellia Clinic, so that they can recommend doctors who are knowledgeable about von willebrand. If you read the other messages on the discussion board you will see that it is common for doctors to lack knowledge and that can put us Von Willebrand patients at risk.
You mentioned thyroid. Thyroid dysfunction can affect hormones, so good to be checked also. But be sure that the doctor does tests for TSH, T3 reverse, T3 free, T4free. Some doctors only check the TSH. This is not sufficient because you can be deficient in others named above.
Also, synthetic thyroid replacement only addresses T4. Natural replacements such as Armour Thyroid replace T4 and T3. This is just some information you should know in case your thyroid is a problem. You can discuss these issues with your doctor.
I hope this information is helpful. It can be frustrating sometimes but knowledgeable doctors are very important when you have Von Willebrand.
Take care,
Allergic
Hallo,
thank you all for your support I really appreciate it.
Aspasia
Aspasia, You're very welcome. I'm glad to share my information with you.
Take care of yourself.
Best wishes,
Allergic
Hallo everyone,
I wanted to give you an update on my situation.
I once more had hemoperitoneum a few weeks ago due to ovulation (or so i thought), lots of abdominal pain and throwing up due to the pain. I went to the hospital were i asked for a Wilfactin transfusion and pain killers which were given to me (thank God for the plasma transfusion...i will explain in a min.), then i asked for a gynecologist in order to have an ultrasound. The doctor took me to the ultrasound and said that nothing was wrong with me, "everything is fine it's just that the ovulation is painful, take pain meds and go home" and so i did. I went home fell asleep and woke up an hour later with the same pain and vomiting, i called the docs that treat me for VWD (in Athens) and they instructed me to immediately return to the hospital. I went back were i was given pain meds again and then i waited.....at some point i asked when will the gynecologist come to see me again and i was informed that he will not see me again because there is nothing wrong with me!!!! I was socked, so my family went to find the gynecologist them selves and ask him to check me again, after a while they called me in for an other ultrasound. I was told once more that there was nothing wrong and i "really" can't understand them when they say that everything is fine with me.....OK.....i asked if everything is fine then why such pain? I was once more told that it's normal due to ovulation, so i got really upset got all my blood tests with me (by the way my hematocrit had drop 3 points lower in a few hours) and went to a private clinic, there the gynecologist took an other ultrasound and was socked to discover that i had a hemoperitoneum (with a lot of blood). I was admitted in the clinic and instructed to lay in bed all day, no food in case a surgery was needed and two more plasma transfusions took place. Thank God for the first one because otherwise i was in big trouble, don't you think? We managed to avoid surgery and after a few days i traveled to Finland for more tests (my moms Finnish) were i was told that i have polycystic ovaries and that was the reason for all those problems each month, all i had to do is take oral contraceptives (Yasmin) to stop ovulation in order to stop the cysts from growing and bleeding every month!!!! My God couldn't anyone have told me this before so that i would have avoided so much trouble????
Now I'm taking Yasmin, we have to wait and see how it works. My question to you now is since i take Yasmin is there a chance that i might have issues when i have plasma transfusions, DDAVP or tranexamic acid with blood clots since i have read everywhere that Yasmin has the tendency to create blood clots?
Thank you for listening to me again and sorry for my long post
Have a nice day
Aspasia
Aspasia,
Hello, I'm so glad you are ok now! You were very wise to seek further medical attention when you were having the pain and vomiting. Thank goodness. That could have been a disaster.
Your question about taking Yasmin and whether there would be complications with transfusions, ddavp or tranexamic acid is one that I would not be able to answer. I suggest that you consult with a Hematologist. It's important that you have a Hematologist. You have special issues and would not want to take any risks without the proper advice from an expert.
Thank God that you finally received the proper care. Please keep us informed.
Blessings,
Allergic
aspa0210 said:
Hallo everyone,
I wanted to give you an update on my situation.
I once more had hemoperitoneum a few weeks ago due to ovulation (or so i thought), lots of abdominal pain and throwing up due to the pain. I went to the hospital were i asked for a Wilfactin transfusion and pain killers which were given to me (thank God for the plasma transfusion...i will explain in a min.), then i asked for a gynecologist in order to have an ultrasound. The doctor took me to the ultrasound and said that nothing was wrong with me, "everything is fine it's just that the ovulation is painful, take pain meds and go home" and so i did. I went home fell asleep and woke up an hour later with the same pain and vomiting, i called the docs that treat me for VWD (in Athens) and they instructed me to immediately return to the hospital. I went back were i was given pain meds again and then i waited.....at some point i asked when will the gynecologist come to see me again and i was informed that he will not see me again because there is nothing wrong with me!!!! I was socked, so my family went to find the gynecologist them selves and ask him to check me again, after a while they called me in for an other ultrasound. I was told once more that there was nothing wrong and i "really" can't understand them when they say that everything is fine with me.....OK.....i asked if everything is fine then why such pain? I was once more told that it's normal due to ovulation, so i got really upset got all my blood tests with me (by the way my hematocrit had drop 3 points lower in a few hours) and went to a private clinic, there the gynecologist took an other ultrasound and was socked to discover that i had a hemoperitoneum (with a lot of blood). I was admitted in the clinic and instructed to lay in bed all day, no food in case a surgery was needed and two more plasma transfusions took place. Thank God for the first one because otherwise i was in big trouble, don't you think? We managed to avoid surgery and after a few days i traveled to Finland for more tests (my moms Finnish) were i was told that i have polycystic ovaries and that was the reason for all those problems each month, all i had to do is take oral contraceptives (Yasmin) to stop ovulation in order to stop the cysts from growing and bleeding every month!!!! My God couldn't anyone have told me this before so that i would have avoided so much trouble????
Now I'm taking Yasmin, we have to wait and see how it works. My question to you now is since i take Yasmin is there a chance that i might have issues when i have plasma transfusions, DDAVP or tranexamic acid with blood clots since i have read everywhere that Yasmin has the tendency to create blood clots?
Thank you for listening to me again and sorry for my long post
Have a nice day
Aspasia
Hallo Allergic,
thank you for your reply. I have two hematologists in Greece and one in Finland, i just wanted to hear what all of you think
Regards,
Aspasia