What is the best birth control option for someone with Ehlers-Danlos syndrome (EDS) who is sensitive to progesterone?

Best Birth Control Options for Ehlers-Danlos Syndrome with Progesterone Sensitivity

For individuals with Ehlers-Danlos syndrome who are sensitive to progesterone, the copper intrauterine device (IUD) is the most appropriate birth control option as it provides highly effective contraception without hormonal components. 1

Understanding the Contraceptive Needs in EDS

Ehlers-Danlos syndrome (EDS) is a group of connective tissue disorders characterized by abnormal collagen synthesis that affects skin, joints, blood vessels, and organs. When selecting contraception for EDS patients, several considerations are paramount:

• Avoidance of hormonal triggers that may worsen symptoms
• Prevention of complications related to vascular fragility
• Management of heavy menstrual bleeding (common in EDS)
• Maximizing effectiveness to prevent pregnancy-related complications

Recommended Contraceptive Options

First-Line Option:

• Copper IUD (Paragard)
  • Provides highly effective contraception (>99%)
  • Contains no hormones, avoiding progesterone sensitivity issues
  • Long-acting (up to 10 years)
  • Recommended by the American College of Rheumatology for patients with rheumatic and musculoskeletal diseases 1

Alternative Options:

1. Barrier methods

   • Condoms, diaphragms
   • Safe for all EDS patients but less effective (12-18% failure rate) 1
   • May need to be combined with other methods for optimal protection

2. Fertility awareness-based methods

   • Safe but significantly less effective (24% failure rate) 1
   • Not recommended as sole method due to high failure rate

Contraceptive Methods to Avoid

1. Combined estrogen-progestin contraceptives

   • Pills, patches, rings
   • Contain progesterone which may trigger sensitivity reactions
   • May increase thrombotic risk in vascular subtypes of EDS 1

2. Progestin-only methods

   • Pills, implants, injections, hormonal IUDs
   • Contraindicated due to progesterone sensitivity
   • Depot medroxyprogesterone acetate (DMPA) additionally poses osteoporosis risk, which may be concerning in EDS 1

Special Considerations for EDS Subtypes

Vascular EDS (Type IV)

• Historically, IUD placement has been approached with caution due to concerns about uterine perforation
• Recent evidence suggests LNG-IUD can be safely placed under ultrasound guidance 2
• For progesterone-sensitive patients, copper IUD placement should be performed with similar precautions

Hypermobile EDS

• Most common subtype
• Higher rates of gynecologic complaints including heavy menstrual bleeding and dysmenorrhea 3
• Copper IUD may temporarily increase bleeding but typically stabilizes after several months

Implementation Guidance

1. IUD Insertion Precautions

   • Consider ultrasound guidance during insertion to minimize risk of perforation
   • Have emergency treatment available during insertion 1
   • No need for prophylactic antibiotics based on EDS diagnosis alone 1

2. Emergency Contraception Options

   • Copper IUD can be used as emergency contraception up to 5 days after unprotected intercourse 1
   • Avoid emergency contraceptive pills containing estrogen and combined hormones 1

3. Follow-up Care

   • Monitor for heavy bleeding in first 3-6 months after copper IUD placement
   • Annual verification of IUD placement is recommended

Pitfalls to Avoid

1. Assuming all EDS patients have the same contraceptive needs

   • Vascular subtype requires special precautions during IUD placement
   • Individual bleeding patterns may affect copper IUD tolerability

2. Overlooking osteoporosis risk

   • EDS patients may have increased baseline risk for bone density issues
   • Avoid DMPA even if progesterone sensitivity is mild 1

3. Delaying effective contraception

   • Pregnancy carries significant risks in EDS, particularly vascular subtypes 4
   • Prioritize highly effective methods over less reliable options

The copper IUD represents the safest and most effective contraceptive option for individuals with EDS who are sensitive to progesterone, providing long-term protection without hormonal side effects while minimizing risks associated with the condition.