I’m trying to understand my symptoms and be able to control them better somehow. My doctor I see tells me that they are not related to the VWD however I think they are. My period will last for weeks and weeks and I mean the first week is awful and like right now it has been 3weeks. Also, I’m always extremely tired I can and do sleep 15+ hours a day if I don’t have to work. I’m just trying to understand if others have this same type of problems and what ideas have worked for others to help these symptoms! Thank you everyone!!
I have the same problem. See a different doctor and maybe an obgyn. My obgyn put me transezamic acid and also I had a mirena put in which makes the bleeding a lot less. I would also get iron studies done to check if you have anaemia.
Definitely see a gynecologist for these issues. I have not been diagnosed with VWD all though it was recently recommended I get tested because both my girls have it and I have some signs of it. I had periods like what you describe all my life and mine were caused by endometriosis. Other things besides VWD can cause issues like you describe.
Thank you everyone! I do see an obgyn every year and every year they run test after test and nothing becomes of the tests the run. Everything comes back normal.
Have they ever done an exploratory laperoscopy? That is the only way to diagnose Endometriosis. I would go and get a second opinion at another obgyn.
I have had testing done for Endometriosis more then once and I have had a lot of testing done over the past 10-12years and been on different birth controls trying to make the symptoms better but nothing has worked, the lining is good everything always comes back normal when I go to the obgyn. I am seeing a new obgyn tomorrow to see if anything changes! Hoping for the best!!
Dear Tbarbea2007,
I am sorry I didn't see your post earlier. Your doc obviously doesn't have much empathy for a person suffering from a three week period or fatigue. Perhaps you should see a different practitioner if possible.
Have you had a CBC (compete blood count) after your bleeding episodes? If your Hgb numbers are down in the eight range you are looking anemic and possibly in need of blood transfusions. What is your PTT or APTT numbers? Are they much above the high end of the reference range? Mine run up to 80 seconds where the top of the reference range is about 30 seconds. The anemia would explain some of the fatigue symptoms. A high APTT suggests further vWD testing to pin down the type and severity. I am type III.
. Have you considered anti-depressant therapy as you are suffering from an "orphan disease" and not getting much help. If you take that route, remind the doc that SSRI and SNRI meds, sometimes increase bleeding as a side-effect. Wellbutryn doesn't have that effect. Also, are you taking Aspirin or other NSAIDS for pain? Ask the doc if Acetominophen which doen't have anti-coagulant properties would be better.. If you are taking Heparin or other blood thinners prescribed for avoiding thrombosis remind your Doc that you have vWD.and are not likely to be in danger of blood clots forming!
If you need transfusions and are currently bleeding, ask your doc for apherized blood products as packed red blood cells come with anti-coagulants in them as a preservative. Apherized blood products have less .
Has your Ob/gyn suggested hormone treatment to lessen the menstrual bleeding? Many vWD type III patients take that route.
Have you had an "iron panel" blood check for Ferritin, total iron etc. available to make new blood? Many of us need regular iron IV infusions as the body tends to consider iron a poison (rightly so in large quantities) and not absorb it readily from slow iron capsules or dark green vegetables. Iron infusions come in several flavors and if you react to one there are others out there in the marketplace you might not react to.
And follow up on some of the other suggestions from other members as I am no expert in gynecological issues!!.
John the elder
John
Thank you! I did start seeing a new obgyn and she started a hormone treatment. This so far has stoped the bleeding and it might sound crazy but even tho the medication has made me very sick to my stomach I am grateful that the bleeding has stoped!
About the test they have run I know I have type1 and I’m not sure about the PTT and the APPT I have never asked the questions. I have had a lot of blood work! I did know about the pain medications and haven’t had anything other then Tylenol, also I do not drink anything caffeinated as they told me that can thin out my blood.
I am hoping this treatment and new obgyn is able to help me! I also am hoping the side effects of the medications will get better!
Over the years I have had iron transfusions and one platelet transfusion. The iron was before they even knew I had a blood problem, they couldn’t stop my bleeding when I was about 15years old and it landed me in the hospital! I’m glad my iron hasn’t dropped to such extrem low levels that I have needed a transfusion they are no fun’
Thank you so much! The information you gave me helps me a lot and helps me better understand what to ask when I see the doctors!
Trish
There is another treatment for excessive menstruation -- endometrial ablation. It zaps the endometrium with microwaves, destroying the cells so that menstruation is no longer possible. I had this procedure done five years ago after a heavy period that lasted four months, leaving me severely anemic. I was fortunate to avoid a hysterectomy, which is often performed for these cases and may cause its own problems. I do not have VWD, however, so do not know whether endometrial ablation is appropriate for VWD patients, but it is something to discuss with your Ob/Gyn if hormonal treatment is contraindicated or causes problems.
Is there a chance you have fibroids? These were the symptoms that led me to get tested for VWD. I have type 1 and was diagnosed at age 37. An Uterine Artery Embolization did not help. I eventually had a hysterectomy. DDAVP, Stimate helped the symptoms.
dancermom said:
There is another treatment for excessive menstruation -- endometrial ablation. It zaps the endometrium with microwaves, destroying the cells so that menstruation is no longer possible. I had this procedure done five years ago after a heavy period that lasted four months, leaving me severely anemic. I was fortunate to avoid a hysterectomy, which is often performed for these cases and may cause its own problems. I do not have VWD, however, so do not know whether endometrial ablation is appropriate for VWD patients, but it is something to discuss with your Ob/Gyn if hormonal treatment is contraindicated or causes problems.