My Experience: Connecting Endometriosis and Ehlers-Danlos Syndrome


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:

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:

ablation v excision endometriosis

Read Here For:

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.

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:

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.

If you’re a social media person, then you can follow me on Instagram, Twitter, Facebook, Pinterest or YouTube.

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. 

3 thoughts on “My Experience: Connecting Endometriosis and Ehlers-Danlos Syndrome

  1. Hello – Thank you for sharing your experience and thoughts. My 15 year old daughter was told in December she likely has endometriosis and they are trying b.c.p. to help. She had a shoulder dislocation a year ago and PT for it but it happens continuously…and has had many sprains over the years. Now she has had increasing pain in her joints for the past 6 months – it has limited her to be most of the past several weeks. Last week she was told all her Rheumo tests were negative and that it is Type 3 EDS based on that physical Breighton test score and her records. Do you think she really need to get genetic testing? The Rheumatologist is going to refer her to the Peds Pain Mgmt clinic for PT, OT, meditation, acupunture, meds…whatever options will help her specifically. She is trying to wrap her 15 year old head around this, is scared about possibly not being able to have kids in the future and manage her daily pain and online schooling. I’ve had to learn she’s not making excuses about not doing her chores, and change my expectations completely. I just want her to feel better and be able to do some normal 15 year old things 🙁

    1. Hi Heather, 

      I’m really sorry to hear about your daughter – it reminds of when I started dealing with endometriosis pain when I was 11. 

      I’m surprised genetic testing has been suggested for type-3 which is the hypermobility type. With what I know, this is the one type that doesn’t show up in genetic testing so I’m not sure the point behind it unless they’re looking for another sub-type of EDS or looking to rule something out. It would be a good idea to ask why.

      Everything your daughter is going through and she will definitely need a team of people to help her out so if she does have an understanding rheumatologist treating her then that’s great – especially if she is putting together all these referrals. 

      Physiotherapy, meditation,… everything mentioned are important and I would even suggest that every specialist helping your doctor needs to communicate with each other and your daughter needs to get into the habit (if she isn’t already) to ask questions so that she can learn what they’re doing to help her and how it will help.

      Her understanding her body is a great lifelong asset especially when we now know that she will be dealing with her medical issues for a while. 

      She should take notes to ask doctors the questions that come to her mind – and you should do the same.

      Also, for me, many pain meds cause drowsiness and because I have POTs, which makes me dizzy, it’s tough for me to have pain meds and so I do what I can with natural options.

      I have a nutritionist that helps me – what we eat makes a large impact on how well our body can handle our medical issues.

      I have put together a list of links from my website which should be a good place to start:

      1. Treatments I use to manage my EDS: http://allthingsendometriosis.com/treatments-manage-ehlers-danlos/

      2. Joint taping: http://allthingsendometriosis.com/using-kinesiology-taping-ehlers-danlos-syndrome/

      3. Natural pain management: http://allthingsendometriosis.com/endometriosis-and-adenomyosis-natural-pain-relief-my-journey/

      4. Diet: http://allthingsendometriosis.com/my-diet-for-endometriosis-ehlers-danlos-syndrome/

      5. Eco-friendly menstrual hygiene products (in case you’re looking for more natural options. I have a lot of heavy bleeding with my endo so regular sanitary options would cause rashes and with EDS skin tends to be more sensitive): http://allthingsendometriosis.com/eco-friendly-menstrual-products/

      Please please remember, no two patients are the same even if they have the same medical conditions on paper but all our bodies respond to everything we go through differently – which is why maintaining a balance between both the physical and mental side is important.

      And one last thing – please keep the communication alive, make her know and understand that she can share everything with you and you won’t judge. Mental and emotional support is so important.

      If you ever need to, you can always email me on [email protected] 

      Please remember to consult your daughter’s medical professionals before you follow any advice suggested. I am not a doctor. I am a patient so I can only share what I’ve gone through.

      I wish you and your daughter all the very best and I really hope she has some  normal teenage years ahead. Good luck! 🙂

      -Shruti

  2. Thank you for all of the information that has been shared. I too, have hEDS and from the descriptions of Endometriosis, I feel that I have had that my whole life as well. My family history has tested positive for the hEDS in an after effect of medical issues and some of them have Endo. One of my children has been clinically diagnosed and confirmed with hEDS as well as myself. I have 10 grandchildren and about 7 out of 10 (6 out of 7 all girls) have already shown signs/symptoms of the hEDS or just EDS.

    In my personal experience all of the signs of Endo. I have and yet I have all of the signs of hEDS, so I too believe that they are related and any person that has Endo. should also consider being positively tested for the hEDS or EDS as well, catching it early can actually be helpful. My sister who had Endo. had a complete and total Hysterectomy at age 27, and with that she has watched her health and managed to not have a lot of the other additional symptoms of hEDS although she does pass the Beighton Nine-Point Scoring System. If my mother who passed away 10 years ago last month would have shared all of her medical history with her children, we would have possibly been able to care for and or treat other associated symptoms of the syndrome early on and I may not be going through what I am going through right now. At least I took the necessary steps to get a confirmed diagnosis with the Mayo Clinic Genetics division and now it is on record so that my children and grandchildren can show that history and maybe help prevent so many possible problems that will start occurring as they start getting older. I am hoping one day someone will find the defective gene link through research, although because there are so many problems associated with hEDS and EDS, etc. it is going to take a lot of persons coming forward to show that this is a prevalent problem especially in women.

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