Fibromyalgia and endometriosis.
Fibromyalgia and endometriosis: my wife’s chronic illnesses.
Last updated: 16/11/2020
My wife, M, suffers from fibromyalgia and endometriosis.
Primarily she was diagnosed with endometriosis and fibromyalgia was just another physiological process that affected her afterward.
How common is it to be struggling with multiple medical conditions? When it comes to chronic illness, many women experience just that.
In the endometriosis community, I’ve met many women who suffer from fibromyalgia and endometriosis simultaneously. I spoke to them whilst attending my wife’s endometriosis support group meetings.
I was gobsmacked, how common fibromyalgia and endometriosis together were affecting so many women.
Quite often women with endometriosis did not know why their pain was spreading beyond the endometriosis areas.
While my wife experienced pain on and off for many years in the past, the pain used to be located in her pelvic area. Over time, the pain has progressed to her legs, spine, eventually becoming widespread.
Her pain became more consistent, eventually becoming a daily struggle.
Table of Contents:
"When the body says no"
According to Dr. Gabor Maté, who I admire immensely, chronic illness, and chronic pain originates from childhood trauma. That also applies to fibromyalgia and endometriosis.
Gabor wrote the book “When the Body Says No”, which my wife has read and loved. It helped her understand that who gets sick and who doesn’t isn’t accidental!
Chronic illness isn’t a random event, so weren’t my wife’s fibromyalgia and endometriosis.
Occasionally we can explain the cause. For instance, lung cancer occurs because of a lifestyle that a person chooses – smoking.
But when it comes to chronic illnesses like fibromyalgia and endometriosis, they are always rooted in childhood.
Both diseases are physiological processes, and we know from science that the mind and body can’t be separated.
I always say that physical and mental health, both impact one another, and both should never be seen as separate.
Doctors should look at the patient as a whole, not accuse of being anxious or depressed when in reality people suffer from invisible to others but real, chronic pain.
People who suffer from fibromyalgia and endometriosis experienced a lot of stress in the past.
This stress usually begins in childhood. That wasn’t only what my wife experienced, but every single woman suffering from fibromyalgia and endometriosis that I have spoken to.
If you suffer from either diseases or even both – fibromyalgia and endometriosis, I urge you to read the book “When the Body Says No – The Cost of Hidden Stress” written by Dr. Gabor Maté.
His book explores the role of the mind-body link in various chronic conditions. It is about the body saying no to stresses in life that people haven’t dealt with when needed to.
This book asks questions such as:
- How much your loved ones stress you take on?
- How much of a people pleaser are you?
- How nice are you to people no matter how you feel?
- How much do you take on the problems of other people and ignore your own?
- How well do you know yourself?
- Do you treat yourself well?
All these questions perfectly apply 100% to my wife! I wonder if you can relate to them too?
It all started when M wanted to say no but she was afraid of what people were going to say, or she was afraid of rejection, of not being loved, or even of not being a good person.
If you engage with these questions as my wife did, your body will respond very positively.
I cannot recommend this book enough!
Dr. Gabor Maté explores in the book the role of the mind-body link in conditions and diseases such as arthritis, cancer, diabetes, heart disease, irritable bowel syndrome, multiple sclerosis, even fibromyalgia and endometriosis.
He is a retired physician who, after 20 years of family practice and palliative care experience, worked for over a decade with patients challenged by drug addiction and mental illness.
My wife's story...
Fibromyalgia and endometriosis that my wife suffers from, both originated in her childhood.
She went through hell since she was little. Her father brought a lot of trauma in her life. I won’t go into the details because it is not my place to say.
However, as a child, it made her frightened and extremely anxious about what he was going to do. M worried about her mum being mistreated by her father and couldn’t focus at school.
She felt very isolated and other kids noticed that. They began to bully her for years to come.
There was a point where she couldn’t stand it anymore and left school to have private tuition at home.
Doctors put her on Prozac at the age of 15 and left her on the antidepressants for the next 18 years. In my opinion, wrongly.
Instead of focusing on the causes of her stressful childhood, it was easier for them to put her on Prozac. That is extremely common these days, which I strongly disagree with.
As a teenager, she found a passion for dancing to become a professional dancer in the future.
However, being a talented and better dancer than other girls, once again, she was bullied for being “different”.
More trauma, more stress, more problems… She got ill with anorexia, and additionally feel into depression. Aside from that M developed Obsessive Compulsive Disorder due to her being a perfectionist.
In her early adolescence, she had a few relationships with men, who weren’t so nice to her. One of them was a drug addict and a bully.
Eventually, she met a nice guy who also was a dancer, and who treated her really well, but after 7 years of relationship, he told her that he did not see the future with her.
During 35 years of her life, M experienced a lot of trauma and was betrayed by people, whom she trusted the most.
But as she was on the verge of giving up, she met me. Mr nice guy!
She fell in love and I became the one for her.
M trusted me, I was the first man who never disappointed her. Furthermore – I cared for her, gave her the love and warmth she needed.
M finally found security and felt wanted, and needed.
We got married in the spring of 2012 becoming the happiest couple on earth, both sharing our passion for dancing, and traveling. We had everything we needed.
On our wedding day, my wife told me that she came to Prozac.
She did very well despite her doctors never keeping an eye on her antidepressants for 18 years. She came off them on her own, gradually over a period of 8 months.
Her life seemed to have changed. But the happiness didn’t last long…
Trauma and disease.
Women with both fibromyalgia and endometriosis have a higher risk of having other autoimmune diseases such as IBS and chronic fatigue syndrome, anxiety, or depression as well as more hospitalizations.
As it happens, my wife so far experienced all of them, as well, as Obsessive-Compulsive Disorder. She has other gastric problems like acid reflux and heartburn, she also suffers from Iron and Magnesium deficiency.
Women who were diagnosed with endometriosis after surgery reported a high prevalence of fibromyalgia. That was the case with my wife. The trauma of endometriosis brought fibromyalgia.
So, are endometriosis and fibromyalgia related?
According to researches from Southwest Spine and Pain Center, “women with endometriosis were twice as likely to have fibromyalgia than those who did not have the condition.
Moreover, 31% of women diagnosed with endometriosis had also been diagnosed with fibromyalgia. Although researchers are unsure as to why both conditions are linked, it is clear fibromyalgia and endometriosis do have some kind of relationship.”
My wife has level 4 deep infiltrating endometriosis and there is a prevalence of fibromyalgia amongst women with deep infiltrating endometriosis.
Ever since she began to experience various pain flare-ups. She’s actually experiencing a stabbing endometriosis pain as we speak!
It’s hard to talk about pain flares when you don’t experience them yourself. I have seen my M in pain enough times to know, that these flare-ups can sometimes overlap.
There are days, especially around her ovulation or period itself, when M experiences stabbing pains which are usually localized in her lower stomach and pelvic area, going down to her legs.
Other times, the pain takes a different form and spreads all over her body. It can be either – sharp, burning in sensation, feel like a dull muscular ache, can be numbing, or her skin is very sensitive to touch.
But there are times when the pain takes a mixed form, coming from both – fibromyalgia and endometriosis.
These are the days when my wife literally climbs the walls in pain.
M used to get frustrated trying to explain her pain, my lack of understanding wasn’t helpful either. After all, I’m a man, and I don’t experience what she’s going through.
One day, I came up with an idea and created a body map on which my wife could draw the pain that she felt.
To illustrate that I will provide you with her own drawings. The first one was blank and ready to be filled:
Second one M marked with endometriosis pain:
The third one resembled fibromyalgia pain:
Lastly, I combined both overlapping each other to reveal how much pain my wife was really going through:
I decided to give away my Chronic Pain Body Map and more. You can access it all with a click of a button below!
FREE Printables for Her:
- Fibromyalgia symptoms checklist
- Endometriosis period pain tracker
- Body pain chart
Chronic pain is the main symptom of most chronic illnesses especially fibromyalgia and endometriosis.
Chronic diseases don’t strike people for no reason. These diseases are not mysterious and they don’t just come from nowhere. There are always some patterns that can be identified.
My wife was puzzled about why she got endometriosis. There was no one in her family who experienced it before.
We learned over time that her fibromyalgia was the reaction to endometriosis.
One in ten women of reproductive age suffers from endometriosis. The problem is that not all of them know it. Many women haven’t even heard of endometriosis.
But when you have a diagnosis of fibromyalgia, this complicates things even further. Any new pain is doubled because of endometriosis if there is a day when they overlap one another.
Endometriosis directly irritates nerves creating an inflammatory response, which has wide-ranging effects on your body. As the endometriosis tissue breaks down and bleeds, your body creates scars called adhesions, which can stick your pelvic organs together.
It can also infiltrate organs like the bowel (my wife’s case) and the bladder, causing even more problems. M goes to the toilet often at night because scars caused by adhesions irritate her bladder.
There is a similarity between fibromyalgia and endometriosis, because women with fibromyalgia, also deal with a lot more pain and fatigue during their periods, and that is always the case for my wife.
People wrongly think that endometriosis symptoms can be managed by hormonal contraceptives. This is not always the case, it may give you some form of relief, but it won’t treat the disease! Unfortunately, it doesn’t work for all women and may even stop working as endometriosis progresses.
Similarly, people wrongly think that fibromyalgia pain can be managed with pain-killers. Again, that is not the case. You cannot treat chronic pain with the mindset of acute pain management.
I explain this very well in detail in my acute vs chronic pain article.
Emotions can play a role in making a person susceptible to diseases. Chronic stress sensitizes the immune system, which becomes overly reactive to any number of triggers.
The importance of positive social and personal relationships in modulating stress isn’t recognized. But my relationship of 13 years with a chronically ill wife thought me precisely that!
M’s symptoms of fibromyalgia and endometriosis improve whenever she’s around me. I never cause her stress, furthermore, I support her on every level, physically and emotionally.
Such a healthy and safe environment improves my wife’s pain. But whenever she thinks of going back to work on Monday, which is one of the triggers, her symptoms begin to arise.
My wife is happily married, and she’s lucky because the study shows that those who are unhappily married and suppress their feelings are for times more likely to die. It sounds drastic but I give you these facts to stress the importance of not holding your emotions.
When suppressing your emotions, your body eventually responds. This is also the case of fibromyalgia and endometriosis.
You cannot separate the mind and body. Your body will always react to your emotions. Positive emotions make the immune system stronger, stress switches off your immune system.
Because at any one time, cells, in other words, your entire body, can be either in defensive mode or growth mode but never both.
If you’re stressed, your body switches to either, fight or flight mode. What happens then is that blood rushes to your limbs away from your gut in case you have to escape or fight.
When your gut is switched off, it can’t fight bacteria or viruses. Your body becomes an easy target. This is when you catch flu, not due to “lack of vitamin C” – there’s no evidence of the latter.
So, stress is not good because it makes your body vulnerable.
This is why the importance of having the right support of a loved one is crucial. Fibromyalgia and endometriosis react to how you feel.
Ask yourself this – whenever you go to the doctor in search of a diagnosis, do they ever ask about your childhood, relationships, marriage? Most probably the answer is no. Instead, they tell you that you have an illness and there’s nothing you can do.
They always assume that you are anxious or depressed. They don’t even ask you why do you feel stressed, and most of the time is the opposite – illness, and pain is the cause of stress.
But most doctors don’t see that. They just try and give you pill after pill. That’s all they do.
They don’t ask about your life factors that contribute to your fibromyalgia and endometriosis.
But it is important to treat these chronic illnesses by targeting the areas of life that are affected by illness and pain such as work, family, relationships, sex life, social life…
The management of fibromyalgia and endometriosis has the same approach as for any other chronic conditions which lack a cure.
It’s about improving the quality of life and functioning.
Chronic pain management requires:
- Medical optimization (CBD for example).
- Physical reconditioning (rehabilitation).
- Behavioral, lifestyle modification (pain psychologist).
- Helping people become more aware of what these factors are, and how they influence pain, is a big part of behavioral and lifestyle modification.
People often think that they need to belong to only one of these categories, but in order to effectively treat chronic pain, you need to consider all the factors.
Fibromyalgia and endometriosis affect many aspects of your life:
- Family, friends.
- Work, school.
- Sports, leisure.
- Vacations, hobbies.
- Socializing, entertainment.
- Cooking, cleaning, errands.
Neglect of the management of these factors, or the wrong, acute approach to managing chronic pain, will impact you not only physically, but also mentally and financially, and the vicious cycle will continue…
The suffering of fibromyalgia and endometriosis pain doesn’t build character, it breaks it!
This is why it is vital to have the right support from your loved ones. But what not many websites and blogs dedicated to fibromyalgia and endometriosis tell you is the impact these illnesses have on the caregivers.
Unfortunately, we – supporters of those who suffer, are always forgotten!
No one talks about our struggles, and yet, as it was in my experience, my wife’s fibromyalgia and endometriosis not only affected her but also me – her husband.
I’ve written an article on the subject of how to cope with a chronically ill spouse.
I summarized it at the beginning in one sentence, that in order to a chronically ill loved one, you need to focus on changing yourself rather than “fixing” your partner’s health.
My wife tried to take her own life on a few occasions, she even asked me to divorce her twice.
M did all this because of the guilt she felt that I wasn’t fulfilling my life being with her. She loved me so much, she was ready to make the ultimate sacrifice. Asking me to divorce her wasn’t easy either.
Life can be cruel for those who suffer from fibromyalgia and endometriosis, but my life wasn’t sunshine and puppy cuddles either. I went through a lot, I sacrificed my own time, my passions, sometimes even my job in order to help her go through this.
So, chronic illness affects more than one person and those who support their loved ones should never be forgotten. Our mental health matters!
I hope you found this article informative. I honestly cannot recommend the book “When the Body Says No” enough! It is going to add a lot of value to your life.
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Who am I?
Hi, I’m Lucjan! The reason why I decided to create this blog was my beautiful wife, who experienced a lot of pain in life, but also the lack of information for those who support their partners… [read more]
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