Endometriosis: Symptoms, diagnosis and histamine intolerance
Endometriosis is a difficult disease. It is difficult to understand, difficult to diagnose, and difficult to treat. Endometriosis symptoms are varied and are often not taken seriously. Even though endometriosis is far from being fully understood, there is some useful information that can already help those affected.
This blog post provides important information for people with histamine intolerance. It also gives you an overview of endometriosis and its connection to histamine intolerance.
What is endometriosis?
Endometriosis is a chronic inflammatory disease of the pelvic floor. It is one of the most common diseases in women – between 7 and 15% of all girls and women of reproductive age are affected. Tissue similar to the uterine lining grows outside the uterus. It often attaches to the pelvis, ovaries, bladder, or bowel. This can lead to the formation of so-called endometriotic lesions.
These can grow and spread within a woman's body. There are three different forms of endometriosis: endometriosis lesions in the muscular layer of the uterine wall (adenomyosis), endometriosis lesions in the pelvic cavity (e.g., in the ovaries), and endometriosis lesions outside the pelvic cavity (e.g., on the bowel or bladder).
Although several theories exist, the exact cause of endometriosis remains unclear. Therefore, finding a suitable therapy or achieving the best possible cure is difficult. Unfortunately, this is not yet possible today.
Endometriosis is a common cause of infertility.
Symptoms of endometriosis
The symptoms are varied. This is precisely what makes diagnosis so difficult – or the endometriosis may go unnoticed altogether.
Possible symptoms of endometriosis include:
- severe, cramping pain during menstruation
- heavier menstrual bleeding
- shortened control cycle
- Spotting
- Abdominal and back pain, often radiating down the legs
- Pain during/after sexual intercourse
- Pain during gynecological examinations
- Problems/pain during bowel movements or urination
- Bloating
- Flatulence
- Diarrhea
- constipation
- Headache
- dizziness
- Loss of libido
HistaTip: Important to know – there is no correlation between the intensity of symptoms and the size of the lesions. Your symptoms can therefore be severe and varied, while any endometriosis lesions you may have are small and difficult to detect. Conversely, you may experience few to no symptoms but have large endometriosis lesions in your body.
These symptoms can, of course, also be caused by other illnesses, such as bowel diseases, gynecological or urological conditions. Therefore, it is important to get to the bottom of the cause of the pain and problems and have it checked by a doctor.
Diagnosis of endometriosis
To diagnose possible endometriosis, a gynecologist should be consulted. They will perform a gynecological examination. Endometriosis lesions may be detected during an ultrasound examination. However, a definitive diagnosis can only be achieved through laparoscopy.
An endometriosis center or specialists in endometriosis are good points of contact.
The journey with endometriosis – a personal account
Melina's best friend Joana suffers from endometriosis and shares her story and how she copes with the disease in this report. Joana is affected by endometriosis genitalis interna (adenomyosis):
I've always had extreme abdominal pain, ever since I started menstruating. I always knew that some women have more severe symptoms than others, but my pain was so intense that I regularly had to go to the hospital, missed school, and couldn't even get out of bed. Once, they found ruptured cysts on my fallopian tubes, but nothing else.
I then received my first pill – hoping to alleviate the pain.
During this time, it was extremely difficult for me not to isolate myself. I didn't understand my body, I felt like I couldn't rely on myself, and I developed a very unhealthy perception and separation between my body and my soul, as a way to protect myself and to have something to be angry about. I had to listen to many comments like: "You're totally overreacting," "You're just being oversensitive," "Of course you're in pain again," and so on.
I wasn't taken seriously by friends, family, or even doctors. I tried many different pills and constantly had conversations about how pain was normal. But the worst part was that at some point I started to doubt my own sanity and see my body as a prison.
When the medication with the pill had no effect except for significant mood swings, I was advised to use a contraceptive ring continuously to maintain a stable hormone balance and reduce pain, so that I would not experience menstrual cramps.
For a while, this gave me relief, both psychologically by avoiding recurring hormone injections and also against the monthly pain – I had a brief moment to breathe.
Eventually, the pain returned, and it was more intense, regular, and frequent than before. It got to the point where I experienced such extreme pain at least once a day and once a night that I vomited and my circulation became dysregulated. I completely lost all enjoyment of sex, as I experienced a "shock of pain" either immediately after every orgasm or after overly intense penetration, or at the latest within the next few hours.
I no longer felt lovable, unattractive, and useless. It's incredibly humiliating to lie naked on the cold bathroom floor after sex with a loved one, just moments before filled with joy, love, confidence, and self-assurance, and to be vomiting repeatedly. My quality of life deteriorated significantly during this time; even in summer, when it was 35°C (95°F), I was never seen without a hot water bottle. My stomach and thighs suffered constant, mild burns.
I then decided that things couldn't continue like this and tried to rebuild my trust in doctors. I also started researching on my own and did a lot of research. A doctor then first mentioned the possibility of endometriosis and scheduled me for an endoscopic laparoscopy.
He explained to me that at the beginning they would only insert a camera to see if any herds could be detected, and if so, they would remove them with two further incisions through which the appropriate tools would be inserted.
I remember the exact moment I woke up from the anesthesia, saw my mother at my bedside, and three incisions on my stomach. My first question was: Is it finally over? Did they find anything? Did they remove everything?
When the doctor explained that they had searched everywhere but found nothing, my world collapsed again. I know you shouldn't be happy about something like a chronic illness. But at that point, I was just desperate, and a diagnosis I could actually work with, where I knew what it was, could explain it, knew how to deal with it, would have simply brought relief.
I broke off my marathon of doctor's appointments back then for exactly that reason, as I could no longer bear the constant hope for a diagnosis, a solution.
After the renewed failure, the ordeal continued. Nothing had changed.
Then, about two and a half years ago, during a routine ultrasound examination at my new gynecologist's office, it was discovered by chance that my anterior uterine muscle was five times larger than it should have been. That was the first time I heard about adenomyosis.
A form of endometriosis where the lesions and adhesions do not grow outside the uterus and/or in the abdominal cavity, but in the uterine wall/in the uterine muscle itself, or where a so-called myoma (a benign tumor) even forms.
The diagnosis both relieved and shocked me.
Firstly, it is a chronic condition; a biopsy of the entire tissue cannot be performed because it could irreparably damage the uterus. The same reason would argue against removing the fibroid.
Fertility may be impaired, or the miscarriage rate increased, because the uterine wall is scarred by the lesions/fibroids, and fertilized eggs may not implant as well. On the other hand: I had a diagnosis, an explanation for others and myself, confirmation that I wasn't crazy, and a new path that had opened up.
The diagnosis brought further questions, problems, and thoughts that I shouldn't really be having at my age, but also certainty, relief, and new opportunities and new paths.
My current treatment plan involves medication to shrink and deactivate the fibroid. Embolization (cutting off the blood supply to the fibroid) was initially deemed unfeasible because insufficient diagnostic information has yet been obtained regarding the size, precise location, and nature of the fibroid (whether it's a large tumor or multiple lesions).
The tablets definitely provide me with relief, and further ultrasound examinations have also shown a reduction in the size of the area. I'm not pain-free yet, but the frequency of pain attacks has decreased significantly. In addition to medication, I try to do active relaxation exercises, especially for my lower back and abdomen, to ensure my organs receive enough care and oxygen through breathing exercises and meditation, and generally to reduce stress in my life to avoid constant physical tension.
In addition, I've changed my diet – I make sure to avoid inflammatory foods and dairy products.
Endometriosis and histamine intolerance
Many people with endometriosis also have a food intolerance or allergy. Histamine intolerance is among the most common.
Histamine can worsen the symptoms of endometriosis. There are several reasons for this:
- Histamine promotes inflammatory processes, such as tissue swelling or increased blood flow.
- There is an important connection between histamine and the hormone estrogen . Elevated estrogen levels lead to increased histamine release.
- Histamines can intensify pain or the perception of pain.
- Endometriosis itself is thought to be able to activate mast cells and thus lead to histamine release.
Irritable bowel syndrome is also associated with endometriosis.
Therefore, an anti-inflammatory, low-histamine, and low-gluten diet, as well as a diet low in dairy products, is strongly recommended for endometriosis. Several small meals a day are also advisable to allow the body sufficient time for digestion.
For example, you could do a four-week elimination diet and keep a food and symptom diary. Then you might be able to notice changes in the next cycle.
Therapy and treatment of endometriosis
Treatment options include surgery, hormones, pain medication, and dietary changes. However, endometriosis is a chronic condition that is generally not curable.
Due to severe pain, medication is often the only treatment option for endometriosis. Nevertheless, we encourage you to explore alternatives and work with your body:
What helps with endometriosis?
As an alternative to medication and hormone preparations, various warm teas can be soothing. Fennel or peppermint teas, for example, are suitable. Furthermore, heat packs, connective tissue massages, acupuncture, or relaxation techniques such as yoga or Pilates can also be helpful.
For the connection between endometriosis and histamine intolerance, it is essential to build and maintain gut health, compensate for deficiencies, and adhere to a low-histamine diet.