Ehlers Danlos Syndrome Treatments for Pelvic Floor Dysfunction

If you’re living with Ehlers-Danlos Syndrome (EDS), you might already know how unpredictable your body can feel. One day you’re dealing with joint pain, the next you’re dealing with pelvic pressure, bladder urgency, or low back pain that seems to come out of nowhere.

While these issues might not feel connected, EDS affects connective tissues throughout your entire body, including in your pelvic floor.

In fact, pelvic floor dysfunction is common in patients with EDS, but it’s often overlooked. Fortunately, there are effective treatment options like pelvic physical therapy, which can help you feel more supported, stable, and in control. Read on for Ehlers Danlos Syndrome treatments for pelvic floor dysfunction.

What is Ehlers-Danlos syndrome (EDS)?

Ehlers-Danlos Syndromes (EDS) are a group of genetic connective tissue disorders that affect how collagen, the protein that gives structure and strength to skin, joints, and organs, is made and organized in your body.¹ When collagen is faulty, tissues become overly stretchy, fragile, or slow to heal.

Ultimately, this can lead to common EDS symptoms, including:

• Joint instability and generalized joint hypermobility
• Fragile skin and poor wound healing
• Fatigue and chronic pain
• Digestive and bladder problems

EDS is usually inherited (meaning it’s passed down from a parent), but in up to half of cases, it can happen as a brand-new genetic mutation (called a de novo mutation) that wasn’t passed down from either parent.¹

Forms of Ehlers-Danlos syndrome

There are 13 different types of Ehlers-Danlos syndrome, and each one can affect your body a little differently.¹ The most common type of EDS is hypermobile EDS (hEDS), which is diagnosed clinically. (Scientists haven’t been able to find a gene change responsible for this type yet). 

Other forms include classical EDS (cEDS), rare subtypes like arthrochalasia EDS, and vascular EDS (vEDS), which can be life-threatening.

If you have joint hypermobility and symptoms that don’t meet criteria for a specific type, you may be diagnosed with Hypermobility Spectrum Disorder (HSD). HSD and hEDS both increase your risk for pelvic floor dysfunction.

Ehlers-Danlos syndrome and pelvic floor dysfunction

In EDS and HSD, the connective tissues that support your body are more stretchy and less stable than they should be. That includes your pelvic floor, the group of muscles, ligaments, and fascia that support your bladder, uterus or prostate, rectum, and help control bowel and bladder function.

When that support system is weakened by faulty collagen (like in EDS), your muscles may have to overcompensate just to keep everything in place. Over time, this can lead to muscle tension, poor coordination, and even pain. 

Pelvic floor dysfunction can show up in a variety of ways::

• Feeling like you have to pee all the time or not being able to tell when you need to go²
• Bladder leakage with coughing, sneezing, or exercise³
• Frequent urinary tract infections (UTIs) or trouble fully emptying your bladder²
• Constipation, diarrhea, or difficulty having a bowel movement^3,4
• A feeling of pelvic heaviness or pressure, or like a tampon is falling out⁵
• Pain with sex (dyspareunia) or pelvic exams⁶
• Chronic pain around your  hips, low back, or tailbone⁷

Many people don’t realize these symptoms are connected to their EDS until they speak to a healthcare provider familiar with pelvic floor dysfunction and connective tissue disorders.

Common pelvic issues with EDS

​​Because EDS affects the connective tissues that support your pelvis, it can lead to a range of symptoms that impact bladder, bowel, and joint function.

Pelvic organ prolapse

One common issue is pelvic organ prolapse. When ligaments and fascia are too lax, pelvic organs can shift downward or push into the vaginal walls, causing heaviness or a feeling like something is falling out — especially after standing or lifting.

Bowel and bladder issues

EDS can affect the reflexes and sensations in your bladder and bowels. This can affect how well you can feel when your bladder or bowels is full — or empty. This can lead to things like constipation, incomplete bladder emptying, fecal incontinence, or even anxiety around finding a bathroom in time.

Pelvic joint pain

Loose ligaments around the sacroiliac joints (SIJ) and pubic symphysis can lead to instability, sharp or aching pain, and the feeling that your pelvis is “out of place.” These issues often worsen during pregnancy due to hormonal changes. And for women with EDS during pregnancy, these issues can start early and worsen because of hormonal changes.

Ehlers-Danlos syndrome treatments: How physical therapy can help

There’s no cure for EDS, but pelvic physical therapy is one of the most effective Ehlers Danlos Syndrome treatments to improve your quality of life.

Whether working one-on-one with a PT in person or following along with one of our online programs, the goal is to help you feel more stable, supported, and in control of your pelvic health.

Here’s how.

1. Pelvic floor muscle support

Specific exercises help balance muscle strength, muscle tone, and coordination:

• Kegels to increase pelvic floor muscle tone and thickness (hypertrophy)
• Training for everyday activities like lifting, sneezing, or using the bathroom
• Pressure regulation strategies to avoid straining
• Modifying positions or movements for your body’s needs

2. Pain management and joint stability

Pelvic PT helps ease pain and improve stability by:

• Releasing tight areas with manual therapy or soft tissue tools
• Strengthening muscles in your hips and core to stabilize your pelvis
• Teaching posture and movement strategies to reduce joint strain
• Using support aids like sacroiliac joint belts or orthotics when needed

3. Bladder and bowel retraining 

Bladder and bowel symptoms are common with EDS but they can get better with strategies like:

• Timed voiding to manage frequency and urgency
• Coordination exercises to help your muscle release better instead of pushing
• Urge suppression techniques like pelvic floor contractions or heel raises
• Routine-building with things hydration, fiber, and consistent timing

4. Support for pelvic organ prolapse

If you have pelvic organ prolapse, physical therapy can give you a lot of guidance and practical tools. For example:

• Education on pessary use to support pelvic organs
• Modified movement strategies and exercise to reduce pelvic organ pressure during activities
• Combining support devices with muscle training for better long-term results

5. Everyday strategies that make a big difference

Simple changes can support your pelvic health in the long term:

• Don’t push or strain during bowel movements.
• Stay hydrated, but avoid overhydrating.
• Use good posture while on the toilet.
• Exercise regularly. Research shows that aerobics can be a great tool to help you.8 manage constipation.
• Track symptoms to recognize patterns and guide care

Ehlers-Danlos syndrome treatments with The Vagina Whisperer

Living with Ehlers-Danlos Syndrome can feel like chasing symptoms that never quite connect — until they do. Pelvic floor dysfunction is a real and treatable part of EDS, and understanding how your pelvic floor plays a role is a giant step toward feeling better.

With the right support, you can improve stability, reduce pain, and manage bladder and bowel symptoms with more confidence. Inside the V-Hive, you’ll find expert-led pelvic floor programs designed specifically for people with muscle weakness, prolapse, and chronic pelvic pain — all grounded in education, movement, and simple self-care tools.

You deserve care that actually fits your body. So, start with a free 7-day trial and take the next step toward pelvic floor relief!

References

1. Miklovic, T., et al. (2023). Ehlers-Danlos syndrome. StatPearls.
2. Gilliam, E., et al. (2020). Urogenital and pelvic complications in the Ehlers-Danlos syndromes and associated hypermobility spectrum disorders: A scoping review. Clin Genet.
3. Nee, J., et al. (2019). Prevalence of functional GI diseases and pelvic floor symptoms in Marfan syndrome and Ehlers-Danlos syndrome: A national cohort study. J Clin Gastroenterol.
4. Thwaites, P.A., et al. (2022). Hypermobile Ehlers-Danlos syndrome and disorders of the gastrointestinal tract: What the gastroenterologist needs to know. J Gastroenterol Hepatol. 
5. Veit-Rubin, N., et al. (2016). Association between joint hypermobility and pelvic organ prolapse in women: a systematic review and meta-analysis. Int Urogynecol J.
6. Kciuk, O., et al. (2023). Pelvic floor symptoms in cisgender women with Ehlers-Danlos syndrome: An international survey study. Int Urogynecol J.
7. Hastings, J., et al. (2019). Joint Hypermobility among Female Patients Presenting with Chronic Myofascial Pelvic Pain. PM&R.
8. Gao, R., et al. (2019). Exercise therapy in patients with constipation: a systematic review and meta-analysis of randomized controlled trials. Scand J Gastroenterol.