A Doula’s Guide to EDS & Pregnancy 2025
by Ziah McKinney, Certified Full Spectrum Birth Doula BADT, Evidence Based Birth® Instructor
ZiahDoula@gmail.com ZiahMcKinney.com Instagram @Ziah_EDS_Doula
This document is to help you assess how your EDS may affect your pregnancy and learn how to apply that knowledge to your choices of healthcare providers, exercise, community support, and self advocacy.
EDS affects each person in a unique way so individualized assessment for risks, benefits and alternatives starts with the lived experience of the person that has EDS. As someone with EDS myself, I believe it's critical that we acknowledge that people with EDS are often denied care because of lack of informed assessments of issues and risks, on average it takes 22 years to get a proper diagnosis so this document is NOT only for people with a clinical diagnosis, but also for anyone with suspected EDS in order to minimize their risks.
Lived experience, your experiences with your body, are not just valid, it is the information that individualized healthcare requires. Individualized healthcare leads to vastly improved healthcare outcomes and what EDS people are often denied. Providing informed risks, benefits and alternatives ensures you receive the appropriate level of care for EACH of your issues.
What is Ehlers-Danlos Syndrome/EDS?
Ehlers-Danlos Syndrome is a group of connective tissue disorders that can affect all body systems. Adipose, cartilage, bone, blood, collagen, and fibrous and loose connective tissues such as organ and blood vessel supports. and skin structure. Each of the 13 types of EDS affects connective tissue differently and each person has unique manifestation, even within families, and can change throughout their life.
Despite the lack of education about EDS it is not rare, but it is rarely diagnosed. It is estimated now that it is as common as 1 in 900 humans have EDS. All genders and races are affected equally. Types of dysautonomia like Postural Orthostatic Tachycardia Syndrome/POTS, and MCAS/Mast Cell Activation Syndrome, are usually comorbid (coexisting) with EDS. There is currently no access to genetic testing for the most common type, hEDS/Hypermobile Ehlers-Danlos Syndrome. You may notice I am referring to EDS only, and not generalized hypermobility, because many of the issues included in this handout are about “the issues in the tissues”, not only joint instability/hypermobility, those with generalized hypermobility can probably confine your use of this document to what applies to joint instability.
The big question- Is someone with EDS/HSD inherently at high risk for worrisome or dangerous complications during pregnancy, birth or postpartum?
With individualized education, support, and care, people with EDS are often not inherently more at risk for complications during their pregnancy, birth, or postpartum than those without EDS.
However, bias against people with disabilities as well as misunderstandings in the medical establishment around EDS can put someone with EDS at risk. In these cases, EDS is not the cause of the complications, but rather a lack of understanding and knowledge in the medical community about how the condition can affect people during pregnancy. In fact, the maternal mortality risk for a disabled person is 4 times higher than someone without a disability, largely due to ignorance and the biases against disabled people.
Note that there is no evidence that someone with EDS is too high risk for a home birth and can be a safer place if there is no practice that is open to safer delivery positioning, or if the EDSer has medical trauma that can make a hospital feel unsafe. Some midwives may feel EDS is too high risk for their practice, but not all will make the same assessment, keep interviewing midwives and sharing your assessment of your risk if a home birth is your desire.
Being referred to a Maternal-Fetal Medicine Specialist to manage pregnancy and possible risks for labor and birth does not automatically translate to evidence-based management of pregnancy and birth by obstetrics practices. If they still give blanket advice that is not individualized to your EDS issues this is not evidence based medical practice.
Five ways to prepare for your pregnancy, birth and postpartum to help avoid high risk complications and prepare in case they happen:
Insist that your medical and support team allows the body and brain that you have to give birth. You are not forced/coerced into non-EDS physical positions, medications, interventions, timings, emotional situations, etc…
Take an Evidence Based Birth® Childbirth Education/CBE class or similar type of CBE that teaches the science of how birth unfolds and how interventions interfere with that process. The purpose for hospital based CBE classes are to prepare a compliant patient. It is common for people with EDS to experience both physical and mental medical trauma, and the pressure to be compliant can prompt a trauma response. A heightened fear response chemically dampens the hormones that create labor.
Use this document and your CBE to take note of your potential issues based on you and your family’s history (quick births, hip dislocations, poor wound healing, etc…). What ways do you personally need to adjust what choices you make? Share them with your clinicians and pay attention to whether they actually listen, take notes and create a care plan based on your information. Red Flag: If they do not suggest an individualized action plan, not just “you are required to have a surgical birth” with no prevention protocol, you may need to seek a more supportive practice.
Investigate if your medical team is following evidence based medical practices, and not enforcing dangerous hospital policies that are not supported by ACOG/American College of Obstetricians and Gynecologists. Asking a medical team open ended questions, “Tell me about your role during the pushing stage and delivery.” is a way to identify RED FLAGS.*** Believe them and don’t assume you can talk them out of their standard practice.
Know how to identify RED FLAGS that put you at risk- There are a multitude of standard hospital policies and interventions that put all birthing people at high risk for interventions and complications, especially in the United States. The US has one of the highest maternal mortality rates in the industrialized world, and a surgical/Cesarean birth rate that is much higher than WHO/World Health Organization standards. Partly this is because of restrictions on providing individualized care from insurance companies and the legal team of the hospital.
What is a Doula and Childbirth Educator and how can they help people with EDS?
A Birth Doula provides physical, informational, and educational support and advocacy. A doula is not medical personnel so they fall outside the scope of the hospital controlling what information they are allowed to share. Doulas are guides that can help you navigate and meld your desires and needs for your birth, without agenda and without rules on what we are allowed to tell you or what we are not allowed to tell you, in the way all state licensure and hospital policies do. Doulas have familiarity, through extensive training and experience, with the world of birth, and have access to resources for information on decisions you may be asked to make. Often, but not always, doulas have a skill set in advocacy to help you and your partner communicate your desires and boundaries to your medical team.
According to ACOG/The American College of Obstetrics and Gynecologists, in an article about surgical birth/c sections, “Published data indicate that one of the most effective tools to improve labor and delivery outcomes is… a doula.”
FRIES Freely Given, Reversible, Informed, Enthusiastic, and Specific
Taking a Childbirth Education Class that is comprehensive, like Evidence Based Birth®, can help you learn more about the physiological processes of birth and most up to date educational resources. By learning about the pregnancy and birth process you can apply your EDS experiences to possible complications you may encounter.
I have also included an extensive list of resources at the end of this handout, not only to reassure that the information I have included in this document has some basis in fact, but also so that anyone can also have access to the information for themselves and to share with anyone on your team…so they can’t say their isn’t proof.
What is a Birth Plan/Path and why should you make one?
A birth plan is a tool for action on the birthing person’s part, coalescing their physical and mental wants and needs, their education about pregnancy/birth/postpartum, and what support and medical services they have access to so you aren’t taken unawares by a decision you are asked to make during your birth or forced into a situation you did not want. The practice of creating a birth plan is educating yourself on the many decisions you may, or may not, have access to and/or encounter when giving birth. Do not expect to just magically get your way just because you have it on a birth plan or you have a doula, the selection of your medical team and support team must align with the choices you are making with your birth. Think of it as a travel plan, if you had a requirement to get diesel fuel then you would plan your route has those stations on it; if you know you are staying over night you usually make a reservation or at least know which cities you may or may not stay in depending on how far you get that day.
The Process of Creating a Birth Plan
Take evidence based and trauma informed Childbirth Education/CBE classes so that you have a fact based idea of what the process of birth is vs what the media depicts it as.
Listen to birth story podcasts, it is hard to make a plan before knowing the wide variety of ways birth can unfold.
Have frank discussions with your obstetrician or midwife about what they do or do not provide, it may surprise you what things are commonplace, in a good or bad way, with that practice, hospital or birth center.
Walk through a birth plan template with a doula to create a structure.
Review your birth plan with your OB practice or midwife.
You can have three plans- Plans A. Physiologic, B. Medical Interventions, and C. Surgical birth/C-section, each path has many different decisions to make along the way. If you are going to post a birth plan in your hospital room, include a short name/label for each decision (not long text or paragraph form, it needs to be able to be looked at quickly) that is separated into stages of labor and delivery. Ask about where to post it for easy access to all staff. Have an advocate in a doula, patient advocate and/or partner that you have discussed these decisions with in detail, this will help ensure minimal disruption during labor (which can disturb the unfolding of hormones that create each stage of labor).
Under no circumstances make up a birth plan without conferring with your medical team, because either the things your put in your plan are standard practice, so there was no need to use space on the page (there are hundreds of decisions you could make so you do need to pick and choose what goes into your plan), AND if the response from the medical team is “We’ll see how it goes” OR “That is against hospital policy” OR you see multiple complaints about that obstetrician or hospital doing that exact thing you don’t want, those are RED FLAGS.
General EDS Issues
During pregnancy regular EDS issues might manifest or worsen (as it might during any time of hormonal changes), if you don’t already take magnesium or other kinds of recommended supplements for EDS, this is the time to research which ones are safe to start during pregnancy and might alleviate the issues you are having. If you are not part of an EDS support group, whether local or through a larger organization like the Ehlers-Danlos Society, this is a good time to join for support. Practice careful consideration about what might be thoughtful support and dismissing unhelpful scaremongering.
Joint Hypermobility/Instability and Pain
Often pregnancy worsens joint pain and hypermobility due to change in weight distribution and changes in hormones like relaxin that is designed to loosen your pelvis for birth. This can intensify or even unmask joint instability during pregnancy. Increasing joint stability with EDS informed exercise programs, like from Jeanne Di Bon, can decrease your pain and reduce your risk of further long lasting injury.
To protect your hip joints during a cervical check, if you have pain or increased joint instability when legs are parted, you can position yourself so that your vaginal examinations are done lying on your side with leg-parting reduced. If laying on your back you may need to avoid the use of stirrups if they don’t swing in to reduce the width your legs are apart. Placing your feet on the table or bringing thighs near your torso, whichever feels less painful, with your hands and/or a trusted staff person preventing your knees going too wide.
✬If the medical practitioner states they are unable to access the cervix in position that is comfortable for you this is a good chance to practice advocating for EDS informed medical care. If they state they personally cannot get access that way you can request to defer the check to another appointment, ask for another practitioner or discuss alternatives they might work with you on. If they say something about that position not being comfortable for them, all you have to say is “Same.” Red Flag if they refuse to modify the position to protect your joints, this informs you that they, or the members of their practice, will not make accommodations to protect you during birth.
Pain Management During Pregnancy
The increased laxity in the EDS joints and tissues can lead to the initiation of or increase in pain and can often lead to immobility. Whilst back pain and pelvic girdle pain (SI/Sacroilliac and Pubus Symphysis joints) probably the most obvious musculoskeletal problems, necks, knees, ankles and feet, as well as other joints can suffer too. Speak to your medical team about your current medications in case they need to be changed to be both safe in pregnancy as well as adequate to keep you comfortable. Consider ways to increase your endorphins (exercise, dance, music, etc…) and oxytocin (cuddling your pet or partner, watching animal videos, etc…), both can reduce your pain. Most people with EDS have preferred coping strategies for their daily aches and pains and here are a few other suggestions:
Breathing techniques
Hydrotherapy/Warm Bath or Shower
Distraction (music, reading, audio books, crafts, cooking, chatting, fidget tool, animal videos, etc)
Meditation
Affirmations
Acupressure
Massage
TENS Unit
Visualizations
Deep/guided relaxation (recording, class, or lead by birth partner)
Walking/movement
Gentle stretching
Yoga
Dance
Massage
Heat packs/Warm Blankets (do not put these on the abdomen)
Cool washcloths
Aromatherapy
Tylenol or analgesics/pain medicine from your physician, not all are prohibited during pregnancy, have this discussion with your providers BEFORE it becomes a severe problem
Potential Issues for for Specific Tissues
Breast Tissue Changes
Breast tissue change is normal with pregnancy, even if the breast does not change size the development of milk can change tissue firmness. A change in the type of bra may be able to reduce tenderness and irritation. Look for bras with wide straps, racer back shapes, and a reduced amount of irritants, like wires and seams, and having a front latch. Getting sized and properly fitted multiple times during and after pregnancy can reduce tissue irritation and pain.
If you intend to breastfeed there is no need to ‘prepare’ nipples, a good latch can help avoid tenderness. After birth, when the milk ‘comes in’ regular over the counter pain relief can reduce the pain of engorgement and wearing a very soft but supportive bra can provide comfort if you have tenderness from movement or touch. On demand feeding and cold compresses can prevent or reduce the engorgement.
Dysautonomia and/or Postural Orthostatic Tachycardia Syndrome (POTS)
Between blood pressure changes, increased relaxin and progesterone, and vasodilation during pregnancy, you may experience an increase in dysautonomia and POTS issues and you may need to educate your care and medical teams about how they affect your life.
Normal pregnancy issues like increased fluid and reduced diastolic blood pressure may exacerbate POTS symptoms, like fainting, fatigue, dizziness and/or nausea, or you may experience them for the first time. This may or may not persist after birth.
The hormone relaxin increases during pregnancy to help soften joints and muscles. It also plays a role in regulating blood pressure and heart rate so it can play a role in increasing POTS issues during pregnancy. During pregnancy all people experience widespread vasodilation, the widening of blood vessels, because of increased levels of estrogen, progesterone and relaxin.
To help alleviate these issues increase your fluids and salt intake to help you catch up with your body’s different blood pressure during pregnancy, and remember to pay attention to your needs postpartum and during lactation.
Dystonia
EDS specific Dystonia—an issue that is characterized by involuntary muscle contractions or spasms that can manifest in things like drop foot, restless leg syndrome and muscle contractions—can change during any hormonal shift.Specifically there can be issues around muscle spasms with inflammation, this can affect pregnancy by an increased vaginal spasms (which are not fun) and someone with EDS can have Braxton Hicks spasms earlier and more often. Keep your inflammatory issues in check to reduce these instances. For the pelvic floor issues and dystonia the muscles are too tight, if you are unable to take your dystonia medication during pregnancy seek the support of a pelvic floor therapist. Since sometimes the pelvic floor spasms are a response to the pelvic bone instability (due to the increase of the hormone relaxin) you can support your loosening pelvic bones with a combo of stability exercises for hips (see Jeanne di Bon videos online) and an SI belt.
EDS Safe Exercise
Benefits of exercise in pregnancy include reduction in Cesarean section rates, a reduction in amount of time in labor, and managing gestational diabetes. Best outcomes come from continuing your previous exercise routine prior to pregnancy if you are able to. There are many types of pregnancy exercise, EDSers know it is not always easy to find types that do not injure and help strengthen joints. Bellydance, Birth Dance classes, walking and pilates often won’t be focused on stretching or impact movement so can be safer for people with EDS.
Be cautious because often pregnancy exercise regimens focus on stretches that do not include support of ligaments and joints that are extra EDS stretchy. Using a chair, block, or ball to support you can help focus on the muscle stretch. Be extra careful about “internal rotation” stretches because firm outer hip muscles like the gluteus minimus and medius help stabilize EDS hips, extra stretching can contribute to instability from the relaxin hormone. An alternate way to increase your pelvic outlet is to bring your knees together to widen your sitz bones. You can practice this by sitting on the toilet and move your legs around to feel how your sitz bones move around, sitz bones pressing against the inside edge of the seat is an open pelvic outlet (for the last part of labor), sitz bones moving away from the seat edge is an open pelvic inlet with knees wide (for the beginning of labor to help the infant to drop down into the pelvis).
Folic Acid and Other Supplements
Folic acid intake is important early on in pregnancy. MTHFR variations are suspected to sometimes coincide with EDS and it can require a more considered way to take your folic acid supplement. Often during pregnancy your regular EDS issues can worsen, if you don’t already take magnesium or other kinds of recommended supplements for EDS, this is the time to research which ones are safe to start during pregnancy.
GastroIntestinal (GI) Issues
People with EDS often have physical GI issues like hernias, out of place organs, plus functional ones like gut motility (how food moves through the stomach and intestines). The crowding in the abdomen during pregnancy, plus a change in hormones, can exacerbate many aspects of these issues.
Since nutrition is especially important during pregnancy, and the prevalence of MCAS with EDSers, you may need to do work arounds in order to maintain a caloric, nutrient and protein intake to support yourself and the growth of the fetus. Think outside the box from what you normally consider meals, changing the size and frequency. If you can only stomach crackers, find ones with nut or bean flours, and try including nut butters and yogurt or cottage cheese in smoothies.
Headaches
Many people with EDS suffer from regular headaches. Hormonal changes and a raised metabolism can lead to an increase in the occurrence of headaches for all pregnant people and those with EDS may need additional support. Speak to your medical team about your current medications in case they need to be changed to be both safe during pregnancy, as well as adequate to keep you comfortable. For some simply increasing fluids and taking simple pain medications, such as Tylenol/acetaminophen, can help. Sometimes headaches are caused by nasal congestion which is increased in pregnancy, try things like steam inhalations (be careful about overheating in a hot bath), saline nasal spray, and sniffing oils such as eucalyptus in common remedies (Vicks). Seek medical attention if your headache is accompanied by nausea, flashing lights and/or is not relieved within an hour of taking Tylenol/acetaminophen, severe headaches can be a sign of either pre-eclampsia or HELLP (Hemolysis, Elevated Liver enzymes and Low Platelets), high blood pressure issues that are dangerous during pregnancy.
Heartburn and Reflux
Having a burning, acidic feeling can be from stomach acid pushing up the esophagus. Many people with EDS have ongoing reflux and symptoms may worsen during pregnancy. Consider what foods increase your discomfort, you may need to keep a food diary. Chewing food completely, sitting up vertically while digesting, and avoiding lying down soon after eating can prevent discomfort because of the potential tissue laxity of the sphincter between the stomach and the esophagus that can’t always prevent food from trickling back up. Lying on your left side at rest can also help improve symptoms (that’s the side most stomachs empty on). If symptoms persist then sips of baking soda dissolved in water or antacids can be considered. Check with your medical team or pharmacy to see what is safe during pregnancy.
Heart Issues
Many people with EDS are used to heart palpitations, these may increase, or become apparent for the first time, in pregnancy. If you feel something new ask your medical team about seeing a cardiologist to eliminate anything of concern. The palpitations often settle back to what was your previous normal after the birth as hormone levels settle. If you have a known aortic root dilation talk to your medical team about having an echocardiogram in each trimester.
Instability of the Cervix
According to the NIH article “Cervical Incompetence” by Monika Thakur; Kunal Mahajan EDS is a known cause of cervical insufficiency/incompetence/instability. Cerclage, a stitch to keep the cervix closed, can be used if softening/dilation occurs early in pregnancy. Bedrest is often used if it occurs later in pregnancy, but does not seem to help in early pregnancy. Two other treatments to ask about are a vaginal pessary and progesterone injections.
It is unfortunate that there is not clear early diagnostic criteria so most diagnoses are made because of multiple pregnancy losses. Hopefully now that EDS is listed as a top cause these diagnoses can be made earlier and more often to prevent these losses.
Of note two studies, “Risk factors for cervical insufficiency after term delivery” Nisha A Vyas et al. and “Impact of a Rapid Second Stage of Labor on Subsequent Pregnancy Outcomes” Madonna, Lauren DO et al., found that people that had a precipitous birth (a quick 2nd stage of labor) were more likely to experience/have experienced cervical insufficiency. In Madonna’s paper “7.3% of women with a precipitous birth in the index pregnancy had a preterm birth in the subsequent pregnancy. This was significantly increased compared to the 2.6% rate of preterm birth in unexposed group.”
Lipedema/Edema
Lipedema is a disease of adipose/fat, a loose connective tissue, and is common in women with EDS. It is woefully under-diagnosed, often written off as cellulite or being fat, and it can restrict the choices people can make about the place they give birth because of BMI bias. It is important to get a proper diagnosis not only so that it does not prevent access to birth centers and home birth, but also so that the proper therapeutic support can be sought.
Swollen feet and ankles/edema are a common aspect of pregnancy but can be exacerbated with the laxity of tissues. Reducing the fluid can be harder for people with connective tissue disorders and access to Lymphedema/lipedema massage therapy may be necessary.
MCAS/Mast Cell Activation Syndrome
MCAS is common/comorbid in people with EDS. It can cause reactions to foods or ingredients in products and medicines. If you have had reactions before, ask your medical care team what medicines you may be prescribed and/or administered during pregnancy and birth. If you can’t tolerate your pregnancy supplements a compounding pharmacy or MCAS support group may be able to help find one that does not contain the additive(s) you can’t have. Examples of additives/excipients: gelatin, cellulose, polyvinylpyrrolidone, starch, sucrose, and polyethylene glycol.
Mental Health
People with EDS appear to be more prone to anxiety and depression. The reasons are probably multifactorial. It is essential that mental health is monitored and, where appropriate, treated in pregnancy to reduce the likelihood of postpartum depression. The likelihood of both prenatal and postpartum depression are increased where there is a previous history of mental health illness and prenatal depression is a predicting factor in postpartum depression.
The EDS propensity to mental health struggles can vary widely between anxiety caused by POTS, medical trauma around getting diagnosis and treatment, to depression around restrictions of being disabled, being neurodivergent, and many other issues. It is important to not stop taking your medications until you check with your doctor. If you are currently being treated for anxiety, depression or any other mental illness, see your GP early in pregnancy to discuss safe treatment/management options. The creation of a support community, and planning ahead of time, can get you support quickly when you need it.
Ways to support yourself during this challenging time:
Maintain a regular nutritious diet
Make a plan with your medical care team ahead of time if you need to change medicines because of pregnancy or lactation
Check vitamin levels, they can vary widely during pregnancy
Make a community care list for who can support your family before, during and after birth
Get out in the fresh air and/or sit in a sunny spot or in bright daylight for a bit every day
Join a pregnancy group, in person and/or online, possibly one that combines exercise or centers around EDS or disability
Regular exercise such as dancing, walking, or swimming gives you access to mood elevating endorphins
Avoid alcohol
Learn mindfulness meditation, practice HypnoBirthing techniques, and/or an app like Curable
Your sleep needs may change during pregnancy with needing support pillows/wedges, accepting intermittent sleep patterns, and/or apnea support
Keep your regularly scheduled therapy appointments or find a Virtual therapist if attending In Person appointments is not realistic
Create and keep in touch with your care team
Create a safe word to use with your support team to let them know when you need support, this can be an easier way to communicate your need quickly, like during birth or at night during postpartum
Nausea, Vomiting and Tinnitus
An EDSer may be more than usually sensitive to raised progesterone levels which can cause nausea, vomiting, tinnitus and vertigo. Nausea is a common feature in pregnancy and not easy to relieve. It can be helpful to eat smaller meals more often to stabilize your blood sugar. Generally, nausea and vomiting pass at about the 16 week mark. If symptoms cause severe and frequent vomiting, called hyperemesis gravidarum, then medication and rehydration in hospital may become necessary.
For those with progesterone-triggered middle ear symptoms, ongoing strategies may be needed throughout pregnancy. It may seem odd to think about tinnitus/ringing in the ears as being influenced by your reproductive cycle but progesterone induced tinnitus has long been acknowledged as an issue during reproductive cycles, partly because it causes fluid and electrolytes to fluctuate. Your POTS may also be harder to manage because of these issues. Rehydration salts, an increase in magnesium, and small frequent meals can go a long way to alleviating the issues these fluid fluctuations cause.
Pelvic Girdle Pain (PGP) or Symphysis Pubis Dysfunction (SPD) or Sacroiliac (SI) Pain
SI and pelvic pain can be an everyday part of having EDS but can increase during pregnancy because of an increase in the hormone relaxin that allows the pelvis to become more flexible to help the fetus pass through during birth. While pelvic pain and instability can be a complaint in pregnancy, some studies show that it is almost four-times greater with EDS, even up to some showing that 88% of pregnant people with EDS indicated they had significant PGP. Some people report pain so bad they are immobile without hip belts or compression garments.
Usually you will need a combo of a few of the things on this list for significant relief-
SI Hip belts
Woven fabric wraps/Bengkung
Compression garments
Physical therapist and pelvic therapy
“Closing the bones” postpartum massage
Changing leg positions and width standing, sitting and laying down can be helpful
Foam support pieces/wedges or peanut balls between the legs
Warm water bottle or heat pad on low on the lower back
Massage, manual and machine
TENS machine
Tylenol or analgesics/pain medicine from your physician
Avoid lifting heavy objects that you are not use to
Maintaining usual exercise or seeking out EDS informed/friendly pregnancy exercise classes
Hydro/warm water therapy (avoid overheating)
Naturally occurring endorphins and oxytocin from friends. family, music, dance, exercise
Back posture and proprioception require even more attention during pregnancy. Compression garments, stabilizing types of exercise, and choosing furniture that supports posture can all significantly improve your quality of life.
Orthotic shoes and/or sizing up your shoes may be helpful as your pregnancy progresses.
Seek exercise classes, and/or therapy, that targets back stability for pregnant people early instead waiting for problems to arise.
Proprioception
Proprioception is perception or awareness of the position and movement of the body. EDS can cause poor proprioception, possibly due to the fact that nerve receptors are located inside tendons/ligaments. This can lead to stumbles, trips and falls. Take extra care on stairs and uneven ground as you joints become more lax during pregnancy. Stabilizing shoes, sometimes prescription orthotics, and a cane are often used as external stabilizers.
Sleep
Sleep is important for mental and physical health and unfortunately sleep issues are common with EDS. Whether that is from joint discomfort, temperature regulation, bladder function, sensory issues, etc…many of the issues can be exacerbated during pregnancy.
Firmer full body support pillows may be needed, weighted blankets added, programmable light bulbs that shut off at a set time so you can just doze off while reading or meditating.
Keeping up with pain medicine management as your weight or needs change is important.
Report poor sleep to your care team, they can order sleep studies in order to assess pregnancy induced sleep apnea that can be managed so that you are more comfortable and get better sleep.
Needing to pee more often, especially early in pregnancy is more a function of hormones than losing space for your bladder, so reducing your fluid intake before bed unfortunately will not help reduce the need to pee during the middle of the night. It is important to keep your fluid intake up, between pregnancy and POTS needs.
Stretch Marks
Our Zebra stripes can develop significantly during pregnancy, and not just on the abdomen and breasts, weight gain, fetal growth, and fluid retention can cause stretch marks to increase even in people without skin fragility. Drinking plenty of water and massaging the prone areas, with high quality oils/salves, can help moderate the severity and help with any itchiness, but nothing can prevent stretch marks if your skin is prone to them. Light skin massage/brushing, during pregnancy and after, can help them be less visible by helping with circulation of fluids, but be wary of products that claim to make them disappear.
Varicosities
Impaired collagen can cause blood vessels to stretch and bulge, leading to a greater incidence of varicosities. Pregnancy brings an increase in progesterone, further softening the smooth muscle of the blood vessels. Varicose veins, hemorrhoids and the vulvar varicosities may all appear or worsen in someone with EDS and some simple self-help strategies can help with prevention or as comfort measures.
Varicose veins- Maintain a usual exercise routine to keep your circulation healthy. Walking, water exercise (swimming, hydrotherapy) and/or dance can be particularly helpful. Elevation of the legs, avoiding crossing at the ankles or knees, and leg exercises can all help to improve circulation. Compression garments can help with prevention and can ease discomfort of existing varicosities.
Hemorrhoids- Both internal and external hemorrhoids can be eased by avoiding constipation. Pushing and (valsalva) straining is one of the least effective ways to poop. Rocking and swaying movement, potty stools, and positioning reduces strain, compaction, tissue damage and the chance for hemorrhoids. Maintaining a healthy diet with plenty of fiber (fruit, vegetables, grains) and fluids can aid regularity of bowels, as does regular exercise. Pelvic floor exercises could help improve circulation. Iron tablets can increase the risk of constipation so consider alternatives if you are anaemic. Cooling gel products and hand held bidet sprayers can help sooth the perineum after birth. In some cases a prescription for creams or suppositories is necessary.
Vulvar varicosities- These can be very painful. Pelvic floor exercises can improve circulation and gel pads can relieve pain and swelling. Stationary standing for long periods can worsen issues and you may need to rest off your perineum to ease the fullness and aching. Make sure the presence of vulvar varicosities is recorded in your medical notes to alert for future obstetric exams and birth attendants because they can be very tender.
Vertebral Instability- Lordosis, Kyphosis, Cervical Issues
These three spinal issues that are common with EDS can be exacerbated by both the relaxin hormone and the increased weight shift to the front of the body. To head off further instability and pain seek out or continue exercise that strengthens the torso and pay attention to changes in posture. Jeannie di Bon’s EDS stability and exercise videos can be a great resource to know how to stabilize through exercise safely. Chiropractors that specialize in EDS/HSD can help pain levels. Compression garments and braces can help with full skeletal instability but be careful about straps like the Body Braid on swollen tissues during pregnancy.
A related issue EDSers can face is ribs being moved around, subluxing and dislocating. Regular exercises that flex the torso to strengthen the intercostal/between the ribs muscles is recommended. Speak to your medical professional if you are ever having any sort of severe pain in your chest or abdomen, not only may they be able to help your rib, it may be something more severe.
In Conclusion
There is no doubt that having EDS can present with, and develop, many and varied challenges during pregnancy, birth, postpartum, and parenting. Some of these are exacerbations of issues that non-EDS pregnant people face, and some are particular to those with EDS. Very few of them are considered high risk medical issues, especially with attention being paid to alleviate serious issues developing.
Thoughtful discussions and careful care-planning, as well as timely referral to appropriate allied health and medical care professionals, can help to minimize the complications and distress that a pregnant person with EDS can face and, hopefully, to reduce the possibility of mental or physical difficulty or long-term injury.
The priority are the needs and desires of the person giving birth, not hospital policy. Remembering that the all of the “teams” that the pregnant person has sought care from are service providers, as in- providing a service that they have requested, is desired, is consensual and evidence based.
How was this document created?
This is the second type of information support document I have created for my clients. My original handout was based on the framework of the article created by British midwife, Rachel Fitz-Desorgher’s “A midwife’s guide to pregnancy, birth, feeding and EDS”, 2017. In 2022 I began to create my own handouts after 3 years of participating in ECHO trainings with the Ehlers-Danlos Society, numerous new studies and articles being published, my support of EDS clients over 5 years, my training to read research papers by Evidence Based Birth®, and the EDS/HSD Reproductive Systems survey conducted with Erica Evans in 2021/2022 to help inform our practice around the support of clients with EDS. These documents (Pregnancy, Birth, Postpartum and Infant Feeding) will be updated often to include updated research, client experiences, and information I learn at conferences or trainings. I will never be finished with updates.
Resources- not just what I used for the document but for YOU to use to learn more!
Standing Up to POTS Website, POTS and Pregnancy: What POTS patients need to know about pregnancy, updated 2023 https://www.standinguptopots.org/POTSiepregnancy
Dystonia and its Treatment in Ehlers-Danlos Syndrome, Hamonet C et al. https://scientonline.org/open-access/dystonia-and-its-treatment-in-ehlers-danlos-syndrome.pdf
Pelvic Girdle Pain, Hypermobility Spectrum Disorder and Hypermobility-Type Ehlers-Danlos Syndrome: A Narrative Literature Review, Ahmed Ali,1 et al. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7764306/
OB/GYN and EDS/HSD by Natalie Blagowidow, MD https://www.ehlers-danlos.com/pdf/2018-annual-conference/N-Blagowidow-2018Baltimore-OB-GYN-and-EDS-HSD-S.pdf
EDS and Pregnancy Ron Jaekle, MD https://www.ehlers-danlos.com/2012-annual-conference-files/Jaekle_EDS_and_pregnancy.pdf
The Evidence for Doulas, Evidence Based Birth, https://evidencebasedbirth.com/the-evidence-for-doulas/
Connection between MTHFR Folate/Folic Acid and Ehlers-Danlos https://www.sciencedirect.com/science/article/pii/S240584402302594X and https://news.tulane.edu/pr/could-vitamin-deficiency-cause-%E2%80%98double-jointedness%E2%80%99-and-troubling-connective-tissue-disorder
Impact of Doulas on Healthy Birth Outcomes
Kenneth J. Gruber, PhD, Susan H. Cupito, MA, and Christina F. Dobson, MEd
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3647727/
Dystonia in the joint hypermobility syndrome (a.k.a. Ehlers- Danlos syndrome, hypermobility type)
Hamonet C1,2*, Ducret L3, Marie-Tanay C4, Brock I2
https://symbiosisonlinepublishing.com/neurology/neurology23.php
Safe Prevention of the Primary Cesarean Delivery, ACOG March 2014 https://www.acog.org/clinical/clinical-guidance/obstetric-care-consensus/articles/2014/03/safe-prevention-of-the-primary-cesarean-delivery
ACOG Articles mentioning doulas https://www.acog.org/search#q=doula&sort=relevancy
Evidence Based Birth extensive collection of articles and podcasts on pregnancy, birth, postpartum and infant feeding https://evidencebasedbirth.com/blog/
Lipedema masquerading as obesity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4010336/
https://www.lipedema.com/lipedema-is-not-just-fat
Exercise During Pregnancy- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4622376/
Jeannie Di Bon, EDS Pilates Movement Specialist
https://www.youtube.com/channel/UCh3dgBm_L5pwaeBQI-Q7yVw
Hypermobile Ehlers-Danlos Syndrome by Howard P Levy, MD, PhD.- https://www.ncbi.nlm.nih.gov/books/NBK1279/
Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond
Dr Sally Pezaro, School of Nursing, Midwifery and Health, Coventry University
Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond
Sally Pezaro, Gemma Pearce, Emma Reinhold 2018
Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond
Dr Sally Pezaro
https://www.magonlinelibrary.com/doi/pdf/10.12968/bjom.2018.26.4.217
“Grey’s Anatomy” Spotlights High-Risk Pregnancy in Woman with an Ehlers-Danlos Syndrome
Gynecologic symptoms and the influence on reproductive life in 386 women with hypermobility type ehlers-danlos syndrome: a cohort study
Justine Hugon-Rodin, Géraldine Lebègue, Stéphanie Becourt, Claude Hamonet, and Anne Gompel
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5020453/
Obstetrics and gynecology in Ehlers-Danlos syndrome: A brief review and update
Natalie Blagowidow MD
Oxytocin Effects of contact with a dog on prefrontal brain activity: A controlled trial
Rahel Marti, et al.
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0274833
Project ECHO “All teach, all learn” teleconference program for healthcare professionals across all disciplines who want to improve their ability to care for people with Ehlers-Danlos Syndromes (EDS)CME/CEU/CE/Nurses credits
https://www.ehlers-danlos.com/echo/
Int J Otolaryngol. 2018; 2018: 7276359.
Published online 2018 Aug 19. doi: 10.1155/2018/7276359
PMCID: PMC6120271
PMID: 30210546
Hearing Performance in the Follicular-Luteal Phase of the Menstrual Cycle
Seyede Faranak Emami, 1 Nasrin Gohari, 2 , 3 Hossein Ramezani, 2 and Mariam Borzouei 2
Original resources from 2017 article by British midwife, Rachel Fitz-Desorgher’s A midwife’s guide to pregnancy, birth, feeding and EDS
Allen S. Ever Heard of Ehlers Danlos syndrome? The Pharmaceutical Journal vol. 292 24/31 May 2014 available online:http://www.pjonline.com/files/rps-pjonline/pdf/PJ-240514-Ehlers-Danlos.pdf
Barton LM, Bird HA. (1996) Improving pain by the stabilization of hyper- lax joints. Journal of Orthopaedic Rheumatology 9: 46–51
Castori M. Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations. ISRN Dermatology (Oct 2012). available online: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/#__ffn_sectitle
Duncan LG, Bardacke N. (2009a) Mindfulness-based childbirth and parenting education: Promoting mindfulness to reduce stress during family formation J Child Fam Stud (in press)
Elliot S, Leverton T, Sunjack M et al (2000) Promoting mental health after childbirth: A controlled trial of primary prevention of postnatal depression. Br J Clin Psychol 39: 223–41
Hay-Smith J, Morkved S, Fairbrother KA. Pelvic floor muscle training for prevention and treatment of urinary and faecal incontinence in antenatal and postnatal women. Cochrane Database System Review 2008;8(4):CD007471
Hughes A, Williams M, Bardacke N, Duncan LG, Dimidjian S, Goodman SH. Mindfulness approaches to childbirth and parenting. BRITISH JOURNAL OF MIDWIFERY, OCTOBER 2009, VOL 17, NO 10
Keer R, Grahame R, Pregnancy and Hypermobility. In Hypermobility, Fibromyalgia, and Chronic Pain, Hakim A, Keer R, Grahame R (eds). Churchill-Livingston, London 2010
Knight I. A Guide to Living with Hypermobility Syndrome – Bending without Breaking. Singing Dragon, London 2011
Lind J, Wallenburg HC. Pregnancy and the Ehlers-Danlos syndrome: a retrospective study in a Dutch population. Acta Obstet Gynecol Scand. 2002;81(4):293-300
McParlin C, Graham RH, Robson SC. Caring for women with nausea and vomiting in pregnancy: new approaches.BRITISH JOURNAL OF MIDWIFERY, MAY 2008, VOL 16, NO 5
National Institute of Health and Clinical Excellence. (2004) Depression: Management of Depression in Primary and Secondary Care. National Clinical Practice Guidelines, Number 23 HMSO, London
O’Hara MW, Swain AM. (1996) Rates and risk of postpartum depression: A meta- analysis. Int Rev Psychiatry 8: 37–54
Owens K, Pearson A, Mason G. (2002) Symphysis Pubis Dysfunction – a cause of unrecognized obstetric morbidity. Eur J Obstet Gynecol Reprod Biol 105:143–6
http://www.pelvicpartnership.org.uk/
Sondergaard KA. (2012) Non-Vascular Ehlers-Danlos Syndrome and Pregnancy: What are the Risks?
Ziah McKinney Reproductive System Support and Advocacy Training 2017- 2024
Evidence Based Birth® Childbirth Instructor
Birth Advocacy Doula Training/ BADT- Full Spectrum Doula
Birth Advocacy Doula Training/BADT- Childbirth Education
Ehlers-Danlos Syndrome/EDS Society ECHO Nurses' Program 3x plus Monthly meetings
Ehlers-Danlos Syndrome/EDS Society ECHO Clinicians’ Program 4x
Ehlers-Danlos Syndrome/EDS Society ECHO Allied Health Professionals’ Program 2x
Ehlers-Danlos Syndrome/EDS Society ECHO Pediatricians’ Program 2x
Ehlers-Danlos Syndrome/EDS Society ECHO Genetics and Genomics Program
Ehlers-Danlos Society 2021 Virtual Summer Conference
Dancing for Birth™ Training- Dance for Pre and Post Natal health, Birth Education, and Optimal Fetal Positioning
Massage therapist with over 30 years experience
Birth Advocacy Doula Training/BADT- Birth and Disability Workshop
Birthing From Within- Crossing the Threshold Mentor Training
Seahorses and Unicorns: Trans Birth for Birthworkers- Trystan Angel Reese
Reclaim the PostPartum webinar- Layla B
Birth Arts International In Person Doula Training- Kira Kimble
Minding My Birthing Business, Kuluntu Reproductive Justice Center- training to build inclusive businesses- Khye Tyson
Ableism, Presentism, and Teaching Medieval Disability- The problems of translation, representation- Dr. Heather Coffey, PhD, OCAD Univ., Kara Stone, Pennsylvania State Univ., Catherine Shepard Bloomer, Columbia Univ., Dr. Lucy C. Barnhouse, Arkansas State Univ.
After Abu-Lughod: Comparative Frames for a Global Middle Ages- Reframing the contributions of the global community- Catherine Holmes, Univ. of Oxford, Naomi Standen, Univ. of Birmingham / Univ. of Oxford, Sharon Kinoshita, Univ. of California–Santa Cruz, Finbarr Barry Flood, New York Univ., Sarah M. Guérin, Univ. of Pennsylvania, Ari Sitas, Univ. of Cape Town, Sumangala Damodaran, Institute for Human Development, Delhi, Suzanne Conklin Akbari, Institute for Advanced Study
