What you should keep in mind as someone living with endometriosis

Almost 30,000 endometriosis patients* required hospitalzation as inpatients in 2020. The average length of stay was 3 days [4]. 

These figures alone show: Endometriosis is the second most common gynaecological disease [3], beyond the most common menstrual complaints. Although they are often dismissed as such - due to a lack of knowledge - until a confirmed diagnosis is made, which usually takes several years.

A US-American research group has drawn attention to a risk for endometriosis patients, illustrating how important a confirmed diagnosis is for holistic health management. Among this, the study also revealed that endometriosis increases the risk of having a stroke.

In this article you will learn

• which signs can indicate endometriosis, 
• what the link is between endometriosis and stroke, and 
• what this result means for your self-care as someone affected

Endometriosis: it often takes years until a diagnosis is made

According to WHO estimates, about 190 million women worldwide are affected by endometriosis [5]. 

However, the clinical picture has gained more and more attention in recent years. Nevertheless, it still takes between 3 and 10 years until a confirmed diagnosis is made in Germany [3]. 

Often unjustly misunderstood as "severe period pains", the diffuse clinical cause is primarily due to inflammatory lesions and cysts. These primarily affect the female reproductive system as well as the pelvic cavity, including the ovaries, fallopian tubes, muscle layer of the uterine wall and cervix, or even the intestine. 

These inflammations in particular are triggered by tissue that resembles the lining of the uterus, but is found growing outside the uterus. These tissue foci not only cause extremely strong pain, incomparable to “regular” menstrual pain, but this tissue can also grow and bleed - even independently from the menstrual cycle [3]. In rare cases, this may also happen in organs outside the lower abdomen.

In addition, the tissue "scattered" in the body promotes the development of chronic inflammations, scarring and adhesions of organs in the lower abdomen. 

Endometriosis can cause severe cramps, pain throughout the body, severe circulatory problems and nausea. 

At the same time, endometriosis is considered one of the most common causes of infertility. Since many patients first receive the diagnosis at childbearing age, the fact of involuntary childlessness alone can be accompanied by strong emotional stress by some. 

The final diagnosis is usually made via palpation, ultrasound or laparoscopy, among other methods.

US researchers provide one more reason, apart from the already known symptoms, on why you should work with doctors on a diagnosis as soon as possible, if you suspect endometriosis.

Endometriosis and stroke: what the data shows

In the summer of 2022, a research group led by Dr. Leslie Farland of the University of Arizona analysed data from more than 112,000 women over a period of about 30 years. The data all came from the "Nurses' Health Study II", a government study series to determine risk factors for serious chronic diseases in women. The series was launched in 1976 and was initially aimed exclusively at nurses. With their expertise on disease patterns, they were able to answer the questionnaires specifically.

At the start of the "Nurses' Health Study II", participating women were between 25 and 42 years old. Over 5,000 of them had endometriosis diagnosed by laparoscopy at the beginning of the study.

While it was already known that endometriosis increases cardiovascular risks, i.e. the probability of heart disease, the researchers added another important aspect to the better understanding of the disease with their evaluation.

In women with a confirmed diagnosis of endometriosis, the risk of suffering a stroke increased by 34 percent. Of which, 39 percent were associated with the removal of the uterus or ovaries. 

In another 16 percent, the researchers hypothesised that hormone therapy accompanying endometriosis could have contributed to the stroke. 

A connection to other factors of the patients, such as age, body mass index or menopausal status, was not found during the data analysis. [1; 2]

Self-care as someone affected by endometriosis

The self-care routine of individuals with endometriosis varies depending on the severity of the individual symptoms. Nevertheless, the following advice can help you to check your personal self-care steps and see if you are taking the right path to an improved well-being. 

• Get an honest overview of your painkiller intake!

Up to now, the therapeutic support of endometriosis patients - with the exception of surgical interventions - has been primarily focused on alleviating the symptoms. For this reason, it is not uncommon for those affected to take prescription painkillers. 

If you are taking painkillers, please discuss this openly with the doctor treating you and do not forget over-the-counter medicines such as paracetamol, ibuprofen or naproxen. When you go to the doctor's office or pharmacy, ask if you can take these medicines if you have an increased risk of stroke.

If necessary, your family doctor will give you a personal medication plan. This will not only help you to keep track of your medications, but will also help you to recognise harmful or otherwise undesirable interactions (for example, weakening of the effect of medications). 

• Get support in your treatment from different specialties!

Although endometriosis is considered a gynaecological disease, you should also seek advice and support from other specialist areas during the course of treatment. In particular, the disciplines of surgery, radiology, pain therapy, urology or, if necessary, physiotherapy can provide you with targeted support. 

If you wish to have a child, ask your gynaecologist about fertility clinics that specialise in endo patients. 

With regard to the increased risk of stroke, neurology doctors and internists or experts in cardiovascular diseases can be your contact points.  

• Keep a pain and stress diary!

A confirmed diagnosis of endometriosis still takes up to 10 years. It can be helpful for you and your doctors if you keep a pain diary in which you enter the duration and type (sharp, pressing, pulling) of the pain as well as the affected body region, if necessary the time and, if known, the trigger (stress, diet, day of the cycle).

At the same time, being mindful of your body's pain signals helps you to deal with them better. If you discover something that relieves your symptoms, you should also make a note of it so that you can more quickly find a routine that strengthens your well-being. 

Tracking moments of stress can also help you to better recognise and avoid triggers, thereby reducing the stress on your body.

If you want, you can present both documents to your doctor to actively support diagnosis and treatment.

• Take your body's signals seriously!

No matter how much you are not understood in your private, therapeutic or professional environment: pay attention to your body's signals and note them down if necessary. This way you will notice irregularities and serious reactions of your body more quickly and you can ask for professional help more quickly. 

Conclusion

Endometriosis is receiving more and more attention. Nevertheless, it can take up to 10 years for a definite diagnosis to be made after the first symptoms.

The clinical picture is very diverse. This circumstance also makes a concrete diagnosis difficult. If you suspect that you have endometriosis, a pain diary can help you to record the symptoms precisely. This supports the anamnesis in medical consultations. The final diagnosis is usually made by palpation, ultrasound or laparoscopy.

Since endometriosis increases the risk of heart disease and strokes according to the latest study analyses, it makes sense to consult experts in other disciplines, such as neurology and cardiology, for your comprehensive therapy as soon as possible in addition to gynaecological care.

The pain caused by endometriosis often requires the repeated use of pain medication. These, in turn, can damage your body. Please discuss the use of pain medication with a trusted medical professional.

Since self-care as a ritual ultimately also means getting support from others, dare to ask for support if it increases your well-being.

 

*At This Place, the inclusion of all genders is a given. However, considering the current state of studies, we have decided not to gender this article. As soon as the studies show signs of an inclusive approach, this article will be adapted to fit the corresponding literature.