Ehlers-Danlos syndrome (EDS) is the name given to a group of rare genetic conditions that affect the connective tissue, which provides strength and structure to the skin, joints, blood vessels, and various organs in the body, including the reproductive organs. In addition to the characteristic symptoms of stretchy skin and overly mobile joints, patients with EDS may also experience problems with fertility and pregnancy.
Fertility and EDS
The impact of EDS on fertility depends on the type and severity of the disease. Some patients may have difficulty conceiving while others may have no issues. According to a survey posted on the Ehlers-Danlos National Foundation website, the incidence of infertility was reported to be 43.3% among the 1,352 responders.
Assisted reproduction through in vitro fertilization with pre-implantation genetic testing may be an option for EDS patients with fertility issues. However, it should only be considered after a detailed discussion with a genetic counselor, gynecologist, and healthcare team about the likelihood of successful implantation, full-term pregnancy, and any potential complications during pregnancy and childbirth.
Pregnancy and EDS
Women with EDS have a higher rate of gynecological problems due to damage to the connective tissue supporting the reproductive organs. The severity of the complications may differ based on the type of EDS. Commonly reported gynecological complications include:
- menorrhagia (heavy menstrual bleeding)
- bleeding between menstruations
- severe dysmenorrhea (menstrual cramps)
- dyspareunia (painful intercourse)
- severe pelvic pain
Pregnancy-associated complications reported in EDS patients include miscarriage, ectopic pregnancies (pregnancy outside the uterus), and premature delivery. There is an increased risk of a preterm birth or late abortion in EDS patients. Breast changes are common due to the hormonal changes related to pregnancy. Therefore, women with EDS may need extra breast support to manage breast changes and prevent injury due to stretchy skin.
Frequently reported post-partum complications in EDS patients include:
- rupture of the intestinal wall or blood vessels
- delayed wound healing
- loss of muscle tone in the uterus (uterine atony)
- pelvic organ prolapse due to weak muscles
- excessive bleeding
- dislocation of the tailbone
- deep vein thrombosis
- musculoskeletal problems
A cesarean section is usually recommended to avoid the added stress of natural birth on the joints and skin, which can exacerbate EDS symptoms.
Obstetric management of EDS
Family counseling is vital to understand the potential implications of EDS on pregnancy. It is important to maintain a healthy lifestyle and undergo regular health checks to monitor the progression of the pregnancy. It is also recommended that patients develop a good birth plan in consultation with their healthcare team. A good plan should include suggestions to protect the skin and joints during delivery. The birth plan should be made available to caregivers and the delivery team, including midwives, if applicable.
Last updated: Nov. 3, 2019
Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.