Endometriosis: Symptoms, diagnosis and histamine intolerance

Endometriosis is a difficult condition. It is difficult to understand, difficult to diagnose, and difficult to treat. Endometriosis symptoms are diverse and are often not taken seriously. Even though endometriosis is far from being completely understood, there is some useful information that can already help those affected.

Among other things, this includes important information for those suffering from histamine intolerance. In this blog article, you will get an overview of endometriosis and its connection to histamine intolerance.

What is endometriosis?

Endometriosis is a chronic inflammatory disease of the pelvic region. It is one of the most common conditions for women – between 7 and 15% of all girls and women of childbearing age are affected. Tissue similar to the lining of the uterus implants itself in the wrong places. It often settles in the pelvis, on the ovaries, on the bladder, or on the bowel. This can lead to the development of so-called endometriosis lesions.

These can enlarge and spread within the 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 urinary bladder).

Even though there are several theories, it is not clear why endometriosis develops. This is why it is also difficult to find a suitable therapy or to cure endometriosis in the best possible way. Unfortunately, this is not yet possible today.

Endometriosis is often the reason for infertility.

Symptoms of endometriosis

The symptoms are diverse. This is exactly what makes diagnosis so difficult – or causes endometriosis to remain unnoticed entirely.
Possible symptoms of endometriosis include, for example:

• severe, cramping pain during the period
• heavy menstrual bleeding
• shortened menstrual cycle
• spotting
• abdominal and back pain, often radiating into the legs
• pain during/after sexual intercourse
• pain during gynecological examinations
• problems/pain during bowel movements or urination
• bloating
• flatulence
• diarrhea
• constipation
• headaches
• dizziness
• loss of libido

HistaTip: Important to know – there is no correlation between the intensity of the symptoms and the size of the lesions. Your symptoms can therefore be severe and diverse while any existing endometriosis lesions are small and difficult to detect. Conversely, you may feel few to no symptoms but have large endometriosis lesions in your body.

These symptoms can, of course, also be caused by other conditions, such as bowel diseases, or gynecological or urological disorders. That is why it is important to get to the bottom of the cause of the pain and problems and have them clarified by a doctor.

Diagnosis of endometriosis

To diagnose potential endometriosis, a gynecologist should be consulted. They will perform a gynecological examination. During an ultrasound examination, it is possible that endometriosis lesions may be detected. However, a definitive diagnosis can only be achieved through a laparoscopy.

An endometriosis center or specialists with a focus on endometriosis are good points of contact.

The journey with endometriosis – a personal report

Melina's best friend Joana is affected by endometriosis and shares her story in this report and how she deals with the disease. Joana is affected by endometriosis genitalis interna (adenomyosis):

I have always had extreme lower abdominal pain since the beginning of my period. I always knew there were women who had stronger symptoms than others, but for me, the pain was so severe that I regularly had to visit hospitals, missed school, and could no longer stand up. Once, burst cysts were found on my fallopian tubes, but never anything else.

I then received my first birth control pill – in the hope of relieving the pain.

During this time, it was extremely difficult for me not to isolate myself. I didn't understand my body, felt I couldn't rely on myself, and perceived a very unhealthy separation between my body and my soul in order to protect myself and have something I could be angry at. I had to listen to many comments like: "You're totally exaggerating," "You're just overly sensitive," "It's obvious you're in pain again," and so on.

I was not taken seriously by friends and family, nor by doctors. I tried many different pills and kept having conversations about how pain was normal. The worst part, however, was that at some point I doubted my own sanity and viewed my body as a prison.

When the medication with the pill brought nothing but significant mood swings, I was then advised to use a contraceptive ring continuously for a consistent hormone balance and less pain, so that I would not get lower abdominal pain caused by the period.
For a time, this provided me with relief, mentally through the avoidance of recurring hormone fluctuations and also against the monthly pain – I had a brief moment of being able to breathe again.

Eventually, however, the pain returned, and it was more severe, more regular, and more frequent than before. It reached the point where I had such extreme pain at least once every day and once every night that I had to vomit and my circulation became dysregulated. I had completely lost interest in sex, because after every orgasm or after overly intense penetration, I suffered a "pain spike" either immediately or at the latest within the next few hours.

I no longer felt lovable, attractive, or useful. It is incredibly degrading, after having intercourse with a loved person—just moments ago full of joy, love, confidence, and self-esteem—to lie naked on the cold bathroom floor and have to vomit repeatedly. My quality of life declined significantly during this time, because even in summer at 35 °C, you wouldn't find me without a hot water bottle. My stomach and thighs suffered from constant light burns.

I then decided that things couldn't go on like this and tried to remobilize my trust in doctors. I also went on a search myself and informed myself a lot. One doctor then mentioned the suspicion of endometriosis for the first time and signed me up for an endoscopic laparoscopy.

He explained to me that at first, they would only insert a camera to see if any lesions could be detected, and if so, remove them with two additional incisions through which the appropriate tools would be inserted.

I still remember exactly the moment I woke up from the anesthesia, seeing 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 then explained that they had searched everything but found nothing, my world collapsed again. I know, one shouldn't be happy about something like such a chronic disease. But at the time, I was at a point where I was just desperate, and a diagnosis I could work with, where I knew what it was, could explain it, and knew how to behave, would have simply brought relief.

I broke off my marathon of doctors back then for exactly that reason, as I could no longer bear the constant hope for a diagnosis, a solution.

After the repeated failure, the ordeal continued. Nothing had changed.
Until about 2 1/2 years ago, during a routine sonographic examination with my new gynecologist, it was discovered by chance that my front uterine muscle was 5 times the size it should have been. That was the first time I heard of 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/the uterine muscle itself, or even a so-called fibroid (a benign tumor) forms.

The diagnosis relieved and shocked me in equal measure.
On one hand: it is a chronic disease, you cannot perform a biopsy of the whole thing as you could irrevocably damage the uterus, the same reason that would speak against removing the fibroid.

Fertility can be restricted, or the rate of miscarriage increased, because the wall of the uterus is scarred by the lesions/the fibroid and fertilized eggs might 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.

With the diagnosis came further questions, problems, and thoughts that I shouldn't really have at my age, but also certainty, relief, and new possibilities, new ways.

My path at the moment is medication to shrink and inactivate the fibroid. Embolization (cutting off the blood supply to the fibroid) was initially considered unfeasible because there hadn't been enough diagnostic clarification regarding the size, exact positions, and nature of the whole thing (one large growth or several lesions).

The tablets definitely provide me with relief, and further sonographic examinations have also shown a reduction in the size of the whole thing. However, I am not yet pain-free, although the frequency of the pain spikes has decreased significantly. In addition to the medication therapy, I try to do active relaxation exercises myself, especially for the lower back and abdomen, to supply my organs with enough love and oxygen through, for example, breathing exercises and meditation, and generally to "de-stress" my life to avoid permanent physical tension.

On top of that, there is my change in diet – I make sure not to consume any pro-inflammatory foods or dairy products.

Endometriosis and histamine intolerance

Many people affected by endometriosis also have an intolerance or allergy to food. Histamine intolerance is one of the most common among these.

Histamine can exacerbate the symptoms of endometriosis. There are several reasons for this:

• Histamine promotes inflammatory processes, e.g., 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 pain perception.
• Endometriosis itself is said to lead to the activation of mast cells and thus to histamine release.

Irritable bowel syndrome is also linked to endometriosis.
Therefore, an anti-inflammatory, low-histamine, and low-gluten diet as well as few dairy products are strongly recommended for endometriosis. Furthermore, several small meals a day are suitable to give the body enough time to digest.

You can, for example, do a four-week elimination diet and keep a food-symptom diary. Then you might be able to notice changes in the next cycle.

Therapy and treatment of endometriosis

Possibilities for therapy and treatment include, for example, surgery, hormones, painkillers, or nutrition. However, endometriosis is a permanent disease that generally cannot be cured.

Due to severe pain, it is often not possible to do otherwise than to treat endometriosis with medication. Nevertheless, we would like to encourage you to test 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 for this. Furthermore, heat packs, connective tissue massages, acupuncture, or relaxation techniques, such as yoga or Pilates, can help you.

For the combination of endometriosis and histamine intolerance, it is indispensable to build and maintain gut health, correct deficiencies, and maintain a low-histamine diet.

Do you want to integrate a low-histamine diet into your everyday life and aren't quite sure where to start? That is exactly why we have put together our HistaStarter Set: It contains six selected organic foods that are suitable for a low-histamine diet and make your start a little easier.

From savory basics to snacks for in-between meals – this is how you can easily bring more variety and enjoyment into your low-histamine everyday diet.

Sources

• Endometriosis and co-occurring conditions
• Nutrition for endometriosis
• Endometriosis symptoms
• Brief information on endometriosis
• Basic knowledge of endometriosis