ENDO... LEARNING TO LIVE WITH PAIN
Emma H. 07/06/2016
How the Autoimmune Protocol gave me courage
Tricky endometriosis
Endometriosis. Those of you who know this disease won’t need any more explanations. Disabling period pain, irregular cycle, tender breasts, ovulation pain, stabbing in the lower abdomen, blood or spotting throughout the cycle, pain and bleeding during or after sex, food intolerances and omnipresent digestive issues, struggle with infertility, immense emotional pressure… And tons of other individual symptoms any woman struggling with the disease could add. Every female body is unique and endometriosis has unique impact on each.
Endometriosis is an extremely painful condition (in most cases) that affects about 1 in 10 women. It is also the most frequent cause of infertility. There are several theories on how the disease originates, none of which are certain. It is a systemic, inflammatory disease (possibly of an autoimmune nature) where the lining of the uterus (endometrium) appears elsewhere in the abdominal cavity (e.g. on the ovaries, bladder or intestines, abdominal wall, etc.). During the cycle, endometrium behaves in the same way wherever it is placed: it grows, getting ready for pregnancy, and if no fertile egg nests in it, it breaks down, bleeds and tries to leave the body. However, because it is in the abdominal cavity and not in the uterus, no pathway allows it to get out of the body, which causes an extremely painful internal bleeding, accompanied by general inflammation in the abdominal area.
Recently, a new documentary on endometriosis has been created. Check out the main messages in my post.
More complications
As if the pain was not enough, further complications are brought about as the bleeding tissue starts to heal. The tissue thickens, scars and loses its flexibility. It often also forms adhesions that can glue organs together, causing further pain (during physical activity, sexual intercourse, or even when resting). This also impairs fertility, or it heightens the probability of extra-uterine pregnancy.
Endo means a lot of pain
To sum it all up, women struggling with endometriosis primarily have to deal with disabling chronic pain and fertility issues. There’s hardly any hope of “resolving” the condition and there is a huge negative impact on their life.
Endo and conventional medicine
The following is a fairly regular scenario when trying to deal with endometriosis with the help of your gynaecologist: When you say you have issues with your cycle, first they tell you that pain can be managed via painkillers, and irregular cycle is normalised with hormonal contraceptives. You cannot be sure that you have endometriosis unless a laparoscopy is performed (other methods, like imaging techniques, are not able to confirm the condition). If laparoscopy confirms the disease, endometrium and adhesions are immediately removed. Laparoscopy is commonly accompanied by a six-month hormonal treatment.
Oh, and you should get pregnant as soon as possible. (Say the doctors.)
It’s not that simple
It sounds all very clear and logical. No hesitations, no emotions. However, my personal experience (together with millions of other women worldwide) is different. Endometriosis means a lifelong struggle (where you’re lost, not understanding your body and desperately trying to look for answers that usually evade you). It can start as soon as your first period. You assume that what you are going through is “normal”. You don’t have any other reference point and the whole society (your family, your friends, your doctor) seems to be telling you that menstrual cramps are normal, so nothing to worry about. (They are not, at least not in such a degree.) Other related issues like digestive disorders or painful sex are hardly mentioned at all. And your doctor will hardly take the time and effort to ask you about how much rest you have, if you deal with a lot of stress or if you spend enough time outside, getting some sunshine and physical activity.
I’ve decided to find my own path – slowly at first, but surely
After I had to face various issues for years, I got to a point when I thought it must be a tumor or something. And I’ve started to gather information online (fortunately, thanks to my language training I didn’t have to rely on Czech sources only). I’ve found out that if there is a suspicion of endometriosis, it helps to write a detailed symptom diary. (The human body is an extremely complex system of action and reaction that is fueled or hindered by hormones, enzymes and nutrients that ensure a healthy balance – so no wonder it takes time and effort to chart what is happening during the female cycle.)
So the next time I went to see my gynaecologist for a regular check-up, I had my six-page Excel table with a thousand (almost) unpleasant and painful symptoms at hand. I also plucked up the courage to be able to mention “endometriosis”.
Time is precious – and doctors usually do not have enough of it to deal with your troubles
I handed over the Excel table to my doctor. He glanced at the first page. I was eager to hear what he thinks and was praying for an answer to what on earth could be so powerful as to regularly knock me out. The doctor’s verdict was:
“This looks like hormonal imbalance. I can prescribe oral contraceptives.” No matter that I had been taking the pill for thirteen years and stopped because of breast pain. No matter that the pill brought about tons of other negative side effects (I still don’t know what role the pill actually played in creating or aggravating my health problems). No matter that it has been proven that it increases the risk of cancer (which I didn’t even know at that time).
Ok, this was the right time for me to ask: “Couldn’t it be endometriosis?”
The reply was fairly traditional: Let’s rule out hormonal imbalance first (by putting you on the pill, duh!?). It could possibly be endometriosis but we won’t know for sure unless a surgery is performed. If it is confirmed, you will then be put on a six-month hormonal treatment. And then you should get pregnant as soon as possible. But what if I don’t want to have kids?! No one was interested in how I felt. (Update: In November 2016 endometriosis and adenomyosis was confirmed through MRI and I went through a laparoscopic excision in March 2017.)
At that point, I wasn’t able to present any more arguments and the doctor made it clear that my consultation time was up. So I left, my mind racing and thinking: “How come he never mentioned all the negative side effects and possible complications? Why didn’t he even explain what a laparoscopy and taking hormones entails?” Whereas I was simply another client for him, the resolution of the ever-present conundrum was almost a question of life and death to me. I needed to understand what was wrong with me.
Fortunately, I understand my body much better now and I am happy to share what steps helped me to effectively manage the issues. Now it’s easy(ier) for me to matter-of-factly state the negatives of conventional treatment of endometriosis.
Can conventional treatment do more harm than good?
A laparoscopic surgery as a treatment of endometriosis usually results in the re-appearance of symptoms (mostly within the next two years) and often with other complications, too. If you have a look at internet discussions on the treatment of endo (at least in the Czech Republic), you’ll soon find out that most women were not even told that endometriosis lesions often grow together and adhesions form after the surgery. They’re equally not explained that a “six-month hormonal therapy” actually means an artificial trigger of menopause. They are simply told that their symptoms will subside. But why? Because we (temporarily and synthetically) deactivate the natural hormonal cycle of the body. The endometrium stops growing and disintegrating (and bleeding). A similar thing happens during pregnancy. Then the unpleasant symptoms subside. But what happens once we stop popping the hormones or breastfeeding? The natural cycle resolves and symptoms reappear. We have healed nothing.
An alternative solution
I’ve chosen a different path for myself. (And I’m excited to say that it was the best decision ever! I’ve been able to be painkiller-free for months now, and that’s a big deal for me.) After the unfortunate consultation with my gynaecologist, I started searching for more information. I was especially relieved to see that sometimes endometriosis disappears without any intervention whatsoever.
This calmed me down and I decided to wait and see.
Fast forward a few years, I started dealing with food intolerances (which I didn’t realise at that time were also often a symptom of endometriosis), and this made me discover the Paleo diet and lifestyle. And amazing things started to happen! Gradually, I realised that my health can get much better and I won’t have to worry about my condition anymore. Endometriosis can be managed naturally!
Update: For more information on natural approach to endometriosis, check out the work of Lara Briden, Dr. Jolene Brighten, and Alisa Vitti.
The Paleo/Primal lifestyle
You may have heard of Paleo. It’s a lifestyle that respects our genetic makeup and tries to reconcile our everyday lives with what is natural for our body. There are many myths related to Paleo, e.g. “Paleo means eating only meat” or “Paleo is only about food”. They are not true. Paleo promotes a healthy nutrient-packed diet (including tons of vegetables), as well as emphasis on sleep, physical activity (preferably in the open air) or reduction of stress. There is a lot of information out there (especially in English), so I won’t go into details.
What I’m interested in is a special version of Paleo that helps deal with hormonal imbalance and endometriosis. The Autoimmune Paleo Protocol (AIP) is a tweaked version of Paleo that helps reverse autoimmune conditions.
The Paleo Approach by Sarah Ballantyne, PhD
The Autoimmune Paleo Protocol (AIP)
Recently, there have been more and more studies that consider endometriosis as a disease triggered by hormonal imbalance and impaired immune system, bringing along systemic inflammation. If you manage to deal with these underlying conditions, you manage to deal with endometriosis. The Autoimmune Paleo approach was designed by Sarah Ballantyne, PhD., who has formulated the basic principles (and provides the underlying biochemical evidence) in her book The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body [1]. Before I delve into the basics of the AIP, let’s first have a look at autoimmune diseases and their surge in the Western world.
When your body doesn’t recognise its enemy
Currently, the Western medicine recognises over one hundred autoimmune diseases (and keeps discovering, or re-classifying, new ones constantly).
These diseases are triggered by an impaired functioning of the immune system, which is “confused” and unable to fulfil its basic function, i.e. recognise a threat and eradicate it. In a person with an autoimmune disease the body doesn’t attack the enemy but its own tissues. It can attack, for example, the skin (psoriasis, allergies, eczema, rashes), the thyroid (Hashimoto’s thyroiditis), the articulation (rheumatoid arthritis), or the brain (multiple sclerosis). “Suspected” autoimmune diseases include among others chronic fatigue syndrome, epilepsy, Parkinson’s disease, schizophrenia, autism, diabetes, and yes, you guessed right, endometriosis. Research still hasn’t clearly established how and why autoimmune diseases originate but it has been proven that the following factors are among the causes:
-
genetic predisposition,
-
infection, environmental factors and, simply, bad luck,
-
diet and lifestyle.
This means that if we have some of the above mentioned symptoms, or if we’re predisposed genetically, we have to take special care of our immunity. (There’s no doubt that taking care of our immunity becomes quite handy even if we don’t have such issues – strong immunity protects us from fatigue, colds, stomach bugs, depression, and many other unpleasant things.)
Take good care of your immunity, and it will take good care of you
Immunity is managed first and foremost from our digestive system. The intestine plays an extremely important role in processing food and uptake of macro nutrients (protein, fat and carbohydrates), vitamins and minerals. These are needed for the good functioning of hundreds of complex processes in our body. It also is a vital organ when it comes to protecting our body from unwanted intruders that hamper the system’s proper functioning. The lining of the gut is a crucial component of our immunity.
Source: The Paleo Mom
Leaky gut syndrome
The wall of the gut consists of a cell-thick layer called epithelium. These cells have control over what crosses the gut barrier and continues into the blood stream and towards the organs (amino acids, fatty acids, monosaccharides, vitamins, and minerals), and what is secreted by the body (toxic waste together with everything the body wasn’t able to fully process and pass it through the barrier). In order for these substances to cross over, they have to be as small as possible (i.e. completely broken down in the stomach and the small intestine).
Once the substances cross over, they are greeted by immunity cells that act as a second guardian and destroy the occasional intruder that wasn’t supposed to pass through in the first place.
Toxins and inflammation
What happens if this protective system doesn’t work properly? Nothing is perfect and the gut lining can be damaged for a number of reasons. It can be due to the following causes:
-
indigestible substances like
-
gluten (from cereals),
-
casein (from dairy products),
-
phytates (from nuts and seeds),
-
-
stress,
-
lack of sleep,
-
infection.
An impaired gut cannot fully perform its protective function and lets through toxins and other foreign substances. Our immune system immediately reacts by attacking and destroying them. Inflammation is designed to help with this process. (Let me stress that inflammation in certain circumstances and in a limited scope is a good thing. It is a natural response of the body that makes sure that the affected area heals.)
A healing protocol
The human body has an incredible capacity to heal itself. We’ve been genetically conditioned to survive the worst conditions. Modern day life full of stress, technology, chemicals, drugs and industrially processed food presents an immense burden for our bodies (and they have more and more trouble dealing with it, which can be seen in the growing number of prescribed drugs every year). There’s no wonder that we experience fatigue, obesity or depression. In order to reverse this negative trend and to start enjoying a healthy life, we need to create the best conditions for our body to heal. By making small changes in our everyday life, we can open the doors to restoration and self-healing. These include:
-
quality diet,
-
enough sleep (and respecting the circadian rhythms),
-
reasonable physical activity,
-
detox of our environment.
Autoimmunity (or endometriosis) doesn’t have to hold you down!
Even though all the above mentioned aspects are important for a healthy life in general, they are crucial for people struggling with an autoimmune disease. Respecting them may mean the difference between life full of fatigue, pain, medication and struggles, and an enjoyable and fulfilled life full of happiness. Their body is very fragile and is struggling with a disease and the underlying inflammation. Therefore, it is necessary to create the best conditions for the body to start regenerating. If you love your body, it’ll love you back!
Well done!
You’ve managed to process a lot of information on immunity, inflammation and related conditions. I hope you now see autoimmunity (and endometriosis) in a different light. I will be happy to share my healing journey with you!
For more English articles from my blog, visit the English blog page. You can also check out my favourite books and products.
Take care and…
...never stop hunting for good vibes!
1] Sarah Ballantyne, The Paleo Approach, Victory Belt Publishing Inc., 2013
