Relationship between Symptoms in Women with Endometriosis and Lifestyles: a Qualitative Interview Study

735 women affected by endometriosis we included in the study realized between February 4th to March 4th 2020. The exclusion criteria were obesity and cancer. The patients were recruited online on the Facebook page of National Association Endo-metriosis Project (APE-ODV) and participated to the study on a voluntary basis by giving their informed consent.

A specific questionnaire was prepared and administered online. The questionnaire was structured in two parts. The first part was mainly anamnestic, focused on gathering information about the age, the stage of disease, comorbidities, involved organs, symptomatology, chirurgical treatment, induced menopause. The second part focused on the individual characteristics and lifestyle of the patients such as the body mass index, physical activity, quality of sleep, and the diet.

The analysis of the interview indicated that the average age of the 735 women who agreed to participate in the study was 36.5+17.5 years. In particular, 5% aged 18-25, 37% aged 26-35, 48% aged 36-45, and 10% over the age of 46. From the results was evident that 85% aged 26-45. Interestingly, the mean age at the time of diagnosis was 28+4 years. It is important to highlight that 84% of patients had received the diagnosis more than 1 year after the onset of symptoms and only 2% within 1 year, by indicating that often the endometriosis diagnosis is tardive. The remaining 14% refers to women that have been diagnosed in few months. This result justifies the stage of the disease at the time of diagnosis, reported by the patients. In fact, 47% of women examined were already at IV stage of the disease, 12% at III stage, 6% at II stage, 6% at I stage, and 29% of patients didn’t remember the stage they belonged to. Only 18% of patients did not present comorbidities. Figure 1 shows the percentage of different pathologies of 72% of women with comorbidity. A data that caught particularly the attention is the high percentage of women with autoimmune pathologies which covers 6% of the examined women of whom 62% were affected by celiac disease (Fig.1).

Figure 1

The presence of comorbidities is another factor that sometimes makes early diagnosis difficult.

From the interview it was clearly evident that several organs were involved in the endometriosis, many of these were simultaneously present in the same patient. In figure 2, the percentage of involved organs.

Figure 2

As a consequence, the symptomatology linked to endometriosis is wide and complex. The main reported symptom at the moment of the diagnosis was the dysmenorrhea (Fig.3).

Figure 3

Unfortunately, the symptom that leads to the diagnosis of endometriosis is not strictly related to this symptom. In fact, almost half of women had a chronic pelvic pain (47%), dyspaurenia (44%) and heavy menstrual flow (40%). These are symptoms until today underestimated, that caracterises the majoruty of women affected by endometriosis. A discrete percentage of women affected by this disease showed reptile discomfort (36%), interpreted as false sensation of needing to defecate, rectal pain, discomfort to stay normally seated, sense of posterior heaviness. In addition, chronic tiredness is often neglected, even though it is a frequent symptom; 36% of women examined showed this symptom. Moreover, 26% of patients presented constipation, 21% diarrhea, 21% meteorism and flatulence phenomenon. Only 6% of patients were asymptomatic.

Very relevant were the symptomatology in relation with menstrual cycle and in the fertility. 56% of women indicated symptoms away from the menstrual cycle, 31% symptoms during the menstrual cycle and right before it and, 13% symptoms only during the menstrual cycle. Often women find out to be affected by endometriosis only after a few failed attempts to conceive, followed by further investigations and studies that confirmed the incapability to conceive. According to this, from the 735 women, only 30% managed to conceive of whom 62% had a disease at the III o IV stage. As consequence, 44% of women were in menopause. Of these, 84% were on a pharmacological menopause, 10% are on a surgical menopause and, 6% are on a spontaneous menopause. Considering that 78% of patients had undergone surgery, either laparoscopic or with laparotomy, it is evident that when patients arrived for surgery, many were already in pharmacological or spontaneous menopause. Among all women that had a surgical treatment, 36% faced a bowel resection or rectal shaving. Among the women examined, 62% followed a pharmacological therapy and of these 78% suffered from collateral effects. Many effects were simultaneously present in multiple patients. Therefore, 43% presented abnormal vaginal discharge, 30% increase in appetite, 28% vaginal candidiasis or other fungal infections, 55% headache, 44% hot flashes, 76% decreased libido, 13% hypertrichosis, 72% body weight changes, 25% nausea, 8% diarrhea, 33% hair loss, 63% nervousness, 60% depression.

BMI is an important factor for the health of subject and its value is calculated considering height and weight. Generally, in adult, BMI between 18.50 and 24.99 is considered as normal-weight, BMI between 16.00-18.49 as under-weight, BMI between 25.00 and 29.99 as over-weight and, BMI above 30 as obesity. As above reported, the patients with obesity were not included in the study. Of the 735 women, 68% were normal weight, 22% under-weight, and 10% over-weight. On a closer look the youngest women had more adequate BMI than older women. More specifically 69% of women over 36 were overweight. These data are relevant considering that the high BMI is strictly related with inflammation of the adipose tissue and an inflammatory picture is not a positive factor for endometriosis.

From this study it has been observed how the physical activity is beneficial on those who work out on a regular basis. However, only 17% of women examined worked out and reported positive results on their health conditions. In details, 33% of women did not work out and another important percentage (30%) worked out only when had time (Fig. 4).

Figure 4

It has been observed how women over 46 years showed more interest in working out. It resulted evident that women with the age between 18 and 25 years and women over 45 did not like physical activity. In fact only 7% of women over 45 and 2% of women with the age between 18 and 25 years practiced physical activity. The majority of women confirmed that used walk for long distances. Among the sport most performed it has been mentioned: yoga, pilates, jogging, swimming e water gym. It is obvious the importance of a healthy and correct lifestyle in order to prevent some pathologies.

21% had a bad quality of sleep, 46% of women reported a discreet quality of sleep, 28% had a good quality of sleep, and only 5% had an excellent quality of sleep. Interestingly, by comparing the chronic tiredness, as one of the symptoms in women affected by endometriosis, with the quality of sleep it appeared evident that among 36% of women that suffered from chronic fatigue syndrome, 76% suffered from poor- quality of sleep; in particular 27% of patients suffered from a very bad quality of sleep, while 49% suffered from discreet quality of sleep; only 23% had a good quality of sleep and a smaller percentage had an excellent quality of sleep.

75% of the examined women thought that nutrition plays a key role on the reduction of the pain linked to the inflammation induced by endometriosis. 46% followed a healthy diet and in particular women aged from 36 to 45 years old. There are several nutritional regimes that can be associated to different ethical, environmental, religious choices and often influenced by current trends. (Fig. 5). According to this aspect, it has been observed that 77% of examined women followed an omnivorous diet, 9% follows a vegetarian diet, 2% follows a vegan diet, about 12% followed alternative diets (ketogenic, macrobiotic, dukan ect.).

Figure 5

In the study we showed how milk and milk derivatives exacerbated the most painful condition (on 59% of patients) followed by sugar, refined flour and baked goods form it derived (on 50% of patients), by indicating that these nutrients might facilitate inflammation process (Fig. 6). Notably, 35% of patients ingested these nutrients 2-4 times a week. In the figure 6 it has been reported the consumption of each type of food during the week

It is known that additional foods that contribute to pain conditions in endometriosis patients are soy and red meat. From the analysis of the responses it was highlighted that women had been alerted about this. In fact, most women did not consume soy and consumed red meat once a week (Fig. 7).

Figure 6

Figure 7

Additionally, cured and processed meats (40% of cases), alcohol (35% of cases), coffee, tea and drinks with caffeine (29% of cases), pre-cooked and readymade goods (28% of cases), chocolate (26% of cases), legumes (17% of cases) increased the pain. Only in some cases fruits (7%) and vegetables (10%) increased the pain condition. It is important to know how cooked vegetables, on 58% of cases, provoked more discomfort compared to raw vegetables. It is really difficult to establish exactly which food is responsible for a pain because several foods often cause pain in the same patient. Patients were well educated about the importance of water consumption. Despite this, 40% of women consumed 1 liter or less of water per day. The most relevant symptoms consequent to the consumption of the above nutrients included abdominal bloating (88%), pelvic pain (40%) and chronic tiredness (34%) (Fig. 8).

Figure 8

Some symptoms are less frequent, but still relevant such as diarrhea, constipation, migraine, dysuria, nausea, meteorism and dyspepsia.