My Experience: Connecting Endometriosis and Ehlers-Danlos Syndrome

I have both endometriosis and Ehlers-Danlos syndrome. I always wondered if they were connected and here is what I found.

Before I do dive into my research, I thought it was best to first understand what Ehlers-Danlos syndrome and endometriosis are. Also if you prefer to see a video version of this post then you can right here, if not, then scroll on 🙂

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue disorder, in which there is a defect in the structure or processing of the protein collagen.

The Ehlers-Danlos Society explains further:

“The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.”

So the symptoms can range from chronic joint and muscle pain, loose joints, skin fragility, scarring, slow healing, fatigue, osteoarthritis and dislocations amongst many other symptoms.

There are 13 subtypes of EDS and I have the Hypermobile-EDS subtype.

How is Ehlers-Danlos Syndrome Diagnosed?

Diagnosis is based on the suspected subtype of EDS.

I was suspected to have Hypermobile EDS – in this subtype, symptoms and the Beighton Nine-Point Scoring System are used for diagnosis. I scored 8 out of 9 on the Beighton test.

So matching my symptoms of chronic pain, loose joints, osteoarthritis, fatigue, skin fragility and my Beighton score, I was diagnosed with Hypermobile EDS.

Usually, the other subtypes have different tests along with genetic testing – this isn’t very conclusive for those with hypermobility.

I’ll now explain endometriosis – once I have done so, I will move on to the connection between the two conditions and how understanding this can change the way we think of our symptoms and how we would like them to be treated.

Please remember, these are my observations based on having been diagnosed with both EDS and endometriosis, watching my own body, speaking to all my doctors who help me out, speaking to a few other patients who have EDS and endometriosis and the research I have managed to do.

If you have been diagnosed with either of the conditions and you suspect you have the other, please speak to your doctor about this – don’t be afraid to explain your concerns. If you need further help on how to prepare for a doctor’s appointment, then do read this.

What is Endometriosis?

Endometriosis is a condition in which the tissue similar to that which lines the inside of the uterus is found growing outside the uterus.

The Mayo Clinic explains further:

“the endometrial-like tissue acts as endometrial tissue would — it thickens, breaks down and bleeds with each menstrual cycle. But because this tissue has no way to exit your body, it becomes trapped.”

This is a condition in which you’re battling pain (dysmenorrhea), heavy bleeding (mennorhagia), painful intercourse (dyspareunia / vulvodynia), bloating, nausea, constipation, diarrhoea, fatigue, infertility – did I mention pain? O’ yes… I did 🙂 – it needed an extra mention because it can be beyond bad – debilitating.

How is Endometriosis Diagnosed?

There are various ways to see if there are any obvious signs of endometriosis.

Other than the symptoms, the gynaecologist will look to get an MRI, a trans-vaginal ultrasound and a pelvic exam.

But, the only way to confirm an endometriosis diagnosis is through a diagnostic laparoscopy – a surgical procedure in which tissue samples from the suspected affected areas are removed and tested to see if it’s endometriosis or something else.

Can Endometriosis be Cured?

A simple answer: No, it cannot. But you can attempt to manage the symptoms through medication, diet, exercise and other natural forms of pain management.

Relevant Read:

• Can Endometriosis Kill You?

For many when it gets unbearable, there are two surgical options in front of you.

1. Ablation Endometriosis Surgery

– In which the disease is burned – the chances of scar tissue forming and the disease returning is much higher than option number two.

2. Endometriosis Laparoscopic Excision Surgery (LAPEX)

– Is supposed to provide long-term relief and a lesser chance of recurrence.

This graphic from Instagram – @endometriosisaustralia provides us with more detail:

Read Here For:

• My Guide: How to Prepare for Endometriosis Laparoscopic Excision Surgery
• My Guide: What to Expect After Endometriosis Excision Surgery

Let’s get on on to the main topic…

Are Endometriosis and Ehlers-Danlos Syndrome Connected?

As someone who has both conditions and would feel an increase in EDS symptoms on and around my menstrual cycle I always suspected there was some connection.

I soon started coming across many women who have both conditions.

I soon started receiving a lot of messages on my Instagram from those who had EDS and wondered if they had endometriosis and those who had endometriosis wondering if they also had EDS.

They wanted to understand my symptoms and how I got diagnosed.

All this questioning made me inquisitive.

I went on to Google and Twitter to see if there was a conversation about this happening.

When I saw Annie Segarra’s tweet on endometriosis being a co-morbid condition of Ehlers-Danlos syndrome, I got in touch with her.

Plenty of people with #EDS deal with this ankle roll on a DAILY basis AS WELL AS period pain for those that have periods.

AND endometriosis is a comorbid condition of EDS.

So this is hilariously presumptuous. https://t.co/ZUTeuK9r3P

— Annie Segarra (@annieelainey) November 10, 2019

She sent me the link of a seminar by Natalie Blagowidow (OB-GYN) on the Ehlers-Danlos Society forum.

In the first 13 minutes of this video you will find two things:

1. Those with Ehlers-Danlos have bleeding disorders most common with gynaecological issues.

Which means, an increase of heavy bleeding (menorrhagia) by 33% to 75%, painful periods (dysmenorrhea) by 73% to 93% and chronic pain of the vagina / painful intercourse (vulvodynia/dyspareunia) by 32%-77%.

So if you have Ehlers-Danlos syndrome, expect highly troubled menstrual cycles and sex-life.

2. Dr Blagowidow does go on to point out that endometriosis is prevalent in 6% to 23% of those affected by EDS which isn’t much more than the non-EDS population.

But what I wish to point out here is that if you have heavy bleeding (mennorhagia) and pain (dysmenorrhea, dyspareunia) – what else truly bothers an endometriosis patient, and aren’t those the symptoms of endometriosis??

Plus to be diagnosed with endometriosis, a lot of surgical deep-digging may be required which can prove to be tough on EDS patients for whom healing is slow.

In fact there is an added complication if you have endometriosis and EDS.

With endometriosis you have a higher chance of infertility and with Ehlers-Danlos you may suffer from complicated pregnancies.

Here’s Dr Blagowidow’s seminar:

It all seems quite complex but as someone who suffers from both issues and speaking to my endometriosis excision surgeon, there does seem to be a connection between the two.

Now I don’t say this lightly, because I also came across this article by Jennafer Vangde Vegte in which she refers to Isobel Knight’s book ‘A Guide to Living with Ehlers Danlos Syndrome’ – Vegte notes:

“EDS can also affect the body’s systemic collagen leading to increased risk for endometriosis, POTS, Renauds, bladder problems, fibromyalgia, headaches, restless legs, ashtma, consitpation, bloatedness, prolapse, IBS symptoms, anxiety, depression and learning difficulties.”

We have to realise that Ehlers-Danlos syndrome is a connective tissue disorder and connective tissue is found everywhere. If it can affect so many areas of our body, then why not the uterus?

I also found this medical literature published on the National Center for Biotechnology Information (NCBI) website which concludes:

“CONCLUSIONS: Careful attention should be paid to women with Ehlers-Danlos syndrome because of an association with many gynecologic complaints. Women with Ehlers-Danlos syndrome should be questioned regarding incontinence, genital prolapse, endometriosis, and dyspareunia.”

Therefore in my non-medical but someone-who-is-suffering-yet-logical-opinion, I question, why would endometriosis not be a comorbidity of Ehlers-Danlos?!

Before I end, I wanted to share this…

How Ehlers-Danlos Syndrome Affected My Endometriosis Excision Surgery

During my pre-surgery appointments, discussing Ehlers-Danlos syndrome with my endometriosis excision specialist surgeon was quite eye-opening.

He went on to explain how he has personally seen an increase in the number of patients who come to him with both endometriosis and EDS. He explained how such patients need to be treated with additional care as internally they’re a bit different to his non-EDS patients and the recovery time is longer.

This proved to be true for me too.

Post-surgery, my surgeon explained how the tissue and ligaments were more elongated than usual – very EDS-like and how my recovery time would be double than usual.

Although this experience doesn’t connect Ehlers-Danlos and endometriosis but I found the increase of one patient with both conditions becoming a more frequent prevalence in his office quite interesting considering EDS is rare and rarely diagnosed plus it takes an average of seven years to diagnose an endometriosis patient.

I believe all this delay in connecting the two conditions can also lead to skewed numbers.

If you’re interested to know how my recovery has gone, you can right here:

• One Year on from Endometriosis Excision Surgery – Was it Worth it?

So that’s a mix of my research and my opinion. Again, I am no medical expert that has medically researched this. If you feel you have either conditions, please do seek professional medical help and be a good advocate for yourself.

If you can shed more light on a connection or non-connection of these two conditions then please do comment below.

Thank you for reading and supporting.

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I have a podcast too. You can check them out here along with their transcripts or if you don’t wanna read them then they’re available on Spotify and Apple Podcasts too.

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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.