Reproductive Issues

There are some reproductive issues that are more common in the bleeding disorders community. For those assigned female at birth, that may include heavy menstrual bleeding, endometriosis, and hemorrhagic ovarian cysts. Difficulties becoming pregnant and repeated pregnancy loss are also frequently experienced. For those assigned male at birth, additional infections, like human immunodeficiency virus (HIV) and hepatitis C virus (HCV), sexual dysfunction such as erectile dysfunction (ED)may be more common. In addition, people with a bleeding disorder and HIV may have questions about how to safely start a family.

This section of Reproductive Issues covers: 

Heavy Menstrual Bleeding

Endometriosis

Hemorrhagic Ovarian Cysts

Sexual Dysfunction

Conception with HIV

Recurrent Pregnancy Loss

Infertility

Heavy Menstrual Bleeding

Many women, girls and those with the potential to menstruate (WGPPM) with a bleeding disorder experience heavy and sometimes painful periods. These periods may last for more than a week and disrupt general and sexual health. Many people use hormonal therapy to manage their heavy menstrual bleeding. If you are thinking about starting a family, you will need to stop hormonal therapy. However, you may worry about how this may impact your bleeding symptoms and what other treatment options are available to you. Talk with your Hemophilia Treatment Center (HTC) team or other health care provider about what plan of care is best for you. Having open discussions with health care providers knowledgeable about your bleeding disorder can help you address questions and concerns. 

If you want more information about heavy menstrual bleeding  and how to manage them, please go to: Normal and Abnormal Periods.

If you want more information about different medications, please go to Treatment Options.   

Endometriosis

Endometriosis is a disorder where tissue that normally lines the inside of your uterus (endometrium), grows on the outside. It can grow in many areas, such as on your ovaries, fallopian tubes, and tissues lining the pelvis. The tissue can also grow on other organs outside of the pelvic area, though this is very rare. The tissue acts very similarly to the tissue inside your uterus. It responds to the hormones of the menstrual cycle, which cause it to grow and then breakdown. Since it is not inside the uterus, it cannot leave the body like the endometrium does. This can cause ovarian cysts, scarring, bands of scar tissue (adhesions), and negatively affect fertility^6,10. 

Endometriosis can cause severe pain. The pain is often located in the pelvis, belly, and lower back. It is the most intense during your period. People with endometriosis can have the following: 

• Extreme bloating 
• Pain during sex 
• Painful bowel movements and urination  
• Heavy Menstrual Bleeding  
• Nausea  
• Infertility 

Endometriosis can take years to diagnose. On average it takes 6.7 years for people 18-45 years old to get a diagnosis.¹⁰ Many often suffer with pain for years and frequently get diagnosed with other issues instead of endometriosis. A preliminary diagnosis may be made based on symptoms and health history. However, exploratory surgery with a camera (laparoscopy) is currently the only way to confirm endometriosis.⁹  

Although most people have pain, some have silent endometriosis. If you have silent endometriosis, you may not have symptoms and may only find out after suffering from infertility.    

Women, girls, and those with the potential to menstruate with bleeding disorders seem to be at an increased risk for endometriosis.³ If you have any of the above symptoms talk with your HTC team or primary health care provider.  

Hemorrhagic Ovarian Cysts

Women, girls, and those with the potential to menstruate with bleeding disorders are at greater risk of blood-filled cysts (hemorrhagic cysts) on the ovaries. These are unlike other types of cysts that are empty or filled with other fluids.  

Hemorrhagic ovarian cysts form from bleeding into the empty part of the ovary called a follicle (corpus luteum follicle). This can happen when an egg leaves the follicle during ovulation. It can also happen when a follicle does not release the egg during ovulation. Instead, it continues to grow and forms a cyst (follicular cyst).^5,7,8   

Often people may not know they have a hemorrhagic cyst because they do not have symptoms. Other times there will be clear symptoms. 

Symptoms of a hemorrhagic ovarian cyst are: 

• Pelvic pain that can be dull or sharp, usually lower down on one side 
• Lower back pain 
• Bloating 
• Feeling of fullness or pressure in the abdomen 
• Heavy or irregular periods 
• Abnormal vaginal bleeding 
• Pain worsened by bowel movements or sex 

Hemorrhagic ovarian cysts can cause serious complications. One of them happens when the ovary twists over itself causing extreme pain (ovarian torsion). Immediate care is needed to save the ovary and prevent other complications, like bleeding.   

A hemorrhagic ovarian cyst can also rupture, causing bleeding into the spaces between your organs in your belly and pelvis (hemoperitoneum). It is a type of internal bleeding and can be incredibly dangerous, especially for people with bleeding disorders. 

If you have any of the following symptoms, call your health care provider and go to the emergency department (ED) as soon as possible: 

• Sudden severe abdominal pain 
• Dizziness or faintness 
• Rapid heartrate 
• Rapid breathing 
• Feelings of fullness, hardness, or pressure of your belly 
• Nausea or vomiting 
• Sharp pain in your shoulders. This is pain that you feel in one part of your body that is actually from another part of your body (referred pain). 
• Weakness 

Depending on how severe the bleeding is, there are different treatment options. These can range from medication and surgery to blood transfusions.^5,8 

Sexual Dysfunction

People assigned male at birth, who have bleeding disorders and co-infections, such as human immunodeficiency virus (HIV) and hepatitis C (HCV), have slightly higher rates of sexual dysfunctions. One of the most common types is erectile dysfunction (ED). ED can be a side effect of taking multiple medications to treat co-infections. Medications may lower testosterone levels and lessen your sexual desire. Ask your Hemophilia Treatment Center (HTC) team or other health care provider about the side effects of the medications you are taking. 

For more information about sexual dysfunction and strategies to address it, please go to Sexual Health. 

Conception with HIV

Heterosexual partners where one partner has a bleeding disorder and HIV can have children. There are many options including sperm washing, donor sperm and pre-and post-exposure HIV prophylaxis. 

To learn more about these possibilities, go to Pregnancy Options. 

Recurrent Pregnancy Loss

According to the American Society for Reproductive medicine, recurrent pregnancy loss is two or more miscarriages with the same partner.¹¹ Pregnancy loss is devastating no matter how long a person was pregnant. Often it can have a significant impact on your mental health. But you are not alone. The exact risk of miscarriage in people with bleeding disorders isn’t fully known. Some bleeding disorders have a higher tendency to recurrent pregnancy loss, such as Factor XIII (F13) deficiency.^1,2,4,12 

If you have a bleeding disorder it is important to meet with your Hemophilia Treatment Center (HTC) team and other health care providers before getting pregnant. They will be able to guide your women’s health care provider (OB/GYN) to develop a treatment plan during your pregnancy, labor and delivery, and up to 4-6 weeks after your baby has been born. They can also provide additional resources, such as support for your mental health and overall well-being.  

Infertility

While infertility is not more common for people with bleeding disorders, it does affect people in the community. About 1 out of 8 heterosexual couples suffer from infertility. Infertility is the inability to have a successful pregnancy after 12 months of unprotected sexual intercourse^.11  

Both partners can cause infertility, so both partners should be assessed. It is usually recommended to be assessed by a health care provider after 12 months of unsuccessfully trying to become pregnant if you are under 35, and after 6 months if you’re over 35 years old. Even though these are the guidelines, if you have a concern, you should talk to a health care provider about your fertility.¹¹  

If you were assigned female at birth, you can start by talking to your women’s health care provider (OB/GYN). They might refer you to a reproductive endocrinologist, which is a health care provider, who specializes in infertility. If you were assigned male at birth, you can talk to a urologist who specializes in infertility. They will not only be able to identify the issue, but also help manage it. 

If you want more information about different ways to become pregnant when dealing with infertility, please go to Pregnancy Options.