Jasmine sat in the doctor’s office, thinking about what a journey this had been. She had been seen by so many specialists over the years. Three months after her first period, she soaked through her clothes at school despite wearing a pad and a tampon. She went to the school nurse and complained of a stomachache so her mom could pick her up and take her home. As she recounted her day to her mom, she told her all the women in her family had heavy periods. She had told her, “It’s just part of the curse. You deal with it till you have babies, then find a doctor to take everything out. That’s what I did, what Aunt Carol did and what Grandma did. You just have to live with it.” Eventually, Jasmine went to a gynecologist, who did some testing and told her nothing was wrong with her uterus or ovaries and suggested trying birth control pills to reduce the amount of bleeding. She tried them, but she had terrible acne and mood swings so she stopped taking them. In college, Jasmine had her wisdom teeth taken out and bled so much that she swallowed enough blood to make her throw up. After delivering her son last year, she had to go back to the emergency room because her bleeding was so severe. Jasmine’s mom told her she had the same problem, too. Again, it was all part of the curse. When she was in the emergency room, the resident looked at the bruises on her arms and legs and asked her if she was in an abusive relationship. Jasmine was flabbergasted. She had always bruised easily. She was always afraid someone would think she was abused, but this was the first time someone asked. She was so embarrassed, especially since her husband was so kind and gentle. Through the postpartum tears, she told the resident about her heavy periods, her bruising, and everything else. She had more testing, but everything was “normal.” Jasmine had to get a primary care provider. And more tests. The new primary care doctor was nice enough, but had insisted she see another doctor. So, here she was again—this time in a hematologist office.
That was 2 years ago. Since that time, she underwent more tests but this time the results were different. The team diagnosed her with a bleeding disorder, with a robust explanation that her symptoms were not part of “the curse,” but due to a relatively common disorder called von Willebrand disease. She met with the hematologist who explained her diagnosis, and all of her symptoms throughout the years started to fall into place. After mentioning her son’s nosebleeds, he was tested too, and also diagnosed with von Willebrand disease. The nurse suggested Jasmine’s mom have the same testing as well. Jasmine and her son visit the clinic yearly to see the Comprehensive Care team. It’s a longer visit, but as long as she brings plenty of snacks for her son, it’s worth it. They see the doctor, a nurse practitioner, a dentist, a social worker, and physical therapist. The team has helped Jasmine educate her son’s preschool on activities he can safely participate in, and in ones to avoid. They both wear medical jewelry so first responders will know about their bleeding issues in case of emergency. Now, Jasmine is 8 months pregnant and here to discuss a plan for delivery, so she and the baby will be safe, and the medical team will be as prepared as possible.
The Bleeding and Clotting Disorders Institute has been providing care to women and girls like Jasmine with bleeding disorders since its inception and realizes the importance of a team approach to care. Women and girls have always been able to participate in comprehensive clinics, and BCDI will be reviving their Women’s Clinic to enhance the experience even more. BCDI Women’s Clinic collaborates with your current primary care provider and/or OB/GYNE. At your visit, you’ll be seen by a hematologist, a nurse practitioner with special interest in the needs of women and girls, a nurse coordinator, a social worker, a dietitian and a physical therapist, as well as a women’s health provider. After each member of the team visits you and discusses their specialty area, the entire team will meet to gain a comprehensive picture of your situation. All of this information will be shared with your primary care provider and/or OB/GYN, so everyone can be on the same page when it comes to your care. BCDI physicians, nurses and staff members are available to help you and your providers learn more about your diagnosis and how it affects your life, medically and day to day.
Bleeding disorders affect over 3 million people in the US and occur when the blood cannot clot properly. This dysfunction can result from a lack of clotting factors, or poor function of the clotting factors present in the blood. Some bleeding disorders are severe and require consistent monitoring/treatment, while other bleeding disorders may cause only minor symptoms. There may be an obvious family pattern to bleeding disorders, but often, there is not. Bleeding disorders can be complicated and complex for any patient. For women and girls with bleeding disorders, heavy periods, reproductive issues, and changes with menopause can cause additional concerns.
Symptoms of a bleeding disorders include
- Easy and/or excessive bruising
– Bruises may “appear from nowhere” or bruises may be very large despite a small injury. Bruises may be large and flat, or may have a hard bump beneath the bruise.
– Nosebleeds may occur spontaneously and/or frequently. Additionally, bleeding from the nose may be very heavy or difficult to stop with ordinary measures.
- Bleeding from gums
– Gum bleeding is often noted with daily brushing. Despite good brushing techniques and good oral hygiene, gums may bleed while brushing or flossing.
- Bleeding with urination or bowel movements
– Blood in the urine may give urine a darker color or it may be tinged with pink. Blood with bowel movements may be noted on the stool or in the water. In either situation, bright red to light pink blood may be seen on toilet paper.
- Prolonged or delayed bleeding following trauma or surgery
– Some bleeding after most surgeries is expected. With a bleeding disorder, bleeding can be unexpectedly heavy and may require medical intervention. Bleeding may continue longer than expected following surgery as well. Bleeding following dental procedures is notable as well.
- Excessive postpartum bleeding or delayed postpartum bleeding in some
– Postpartum bleeding is also expected, but is notable if it is excessive or prolonged. Again, intervention from a doctor may be required to stop or slow the bleeding.
- Bleeding during or following intercourse
– Bleeding consistently, frequently or heavily with intercourse may be a symptom of a bleeding disorder. Bleeding which lasts longer than expected is notable too.
- Heavy menstrual bleeding
– Heavy bleeding with periods is one of the most common signs of a bleeding disorder in women and girls. It’s important to speak with a trusted medical professional about the amount of bleeding that occurs with your period. Sharing details like the number of pads or tampons you use daily, whether or not you need to change clothing, the length of your period and whether or not you pass clots while bleeding are all crucial pieces of information that will help your provider to know whether the symptoms you have are out of the ordinary.
- It’s very common for women and girls to experience heavy bleeding, but feel like they need to live with their symptoms. Since bleeding disorders often run in families, it’s also common for women to discount heavy bleeding since their mothers, aunts, and sisters may have similar bleeding patterns. Additionally, some medical practitioners don’t ask specific details about periods and many women don’t feel comfortable bringing it up at their appointments. Because of these factors, it can take years for girls and women to be diagnosed with a bleeding disorder. Using a tool such as a period tracker app or a period journal can help make a difficult conversation at your provider’s office easier. Having detailed information will help quantify your symptoms. There are also multiple paper versions of period trackers as well.
If you feel you have symptoms of a bleeding disorder, the best place to begin is to have a conversation with your primary care provider. Hopefully, this provider is familiar with you and your medical history. They may delve deeper into your past history and current symptoms, and run some simple blood tests. Depending on the results of these tests, you may be referred to a hematologist, who is a specialist in diseases of the blood. The hematologist may run more specialized blood tests and can share specific information regarding diagnosis and management. Because blood clotting is a highly complex process, there are a multitude of different diagnoses. Some of the most common diagnoses include:
- Hemophilia results from a decrease in specific factors which help the blood to clot. Hemophilia is classified as mild, moderate or severe depending on how much of the specific factor is missing for each patient. Hemophilia is often passed on in families. If a father has hemophilia, the gene will always be passed on to his daughter, making her an “obligate carrier.” Women and girls with hemophilia may have decreased factor levels, or they may have normal factor levels but still have bleeding symptoms. Depending on which factor levels are low, pregnancy may or may not change the factor levels. Because of the variability of factor levels with pregnancy in women with hemophilia, it is important to work with a hematologist to make a safe plan for delivery.
- von Willebrand disease results from a decrease in or malfunction of a protein in the blood which helps to form clots. There are different classifications of von Willebrand disease and it can vary in severity. Up to 33 percent of women who have heavy periods may have von Willebrand disease, though the number of women who have been diagnosed is much lower. As in hemophilia, pregnancy can influence von Willebrand levels, and it is important to have a plan for delivery and postpartum. Breastfeeding can help maintain von Willebrand factor at a safe level after birth.
- Platelets are cells which help form blood clots. Platelet disorders may result from a decreased number of platelets, poor function of the platelets, or poor interaction of the platelets with other components of the blood. Platelet disorders include, but are not limited to, inherited thrombocytopenias, substance induced thrombocytopenia and immune thrombocytopenia (ITP). Platelet counts can change substantially and close monitoring of blood tests and symptoms by a hematologist is very important.
Due to the effects a bleeding disorder can have on multiple aspects of your life, receiving care from a multidisciplinary team can be helpful. To discuss needs specific to women and girls or for questions regarding your own situation, please call the Bleeding and Clotting Disorders Institute (BCDI) for more information.
For more information call the Bleeding and Clotting Disorders Institute at (309) 692-5337.