‘They said it was a woman’s pain’: the delay in the diagnosis of endometriosis that leads to surgical menopause

At the age of 32, artisan Adriana Tigre began to have symptoms typical of women who reach menopause. Episodes of intense heat, irritability, changes in sleep and mood…

Usually related to the period that encompasses the last menstrual cycle of women, between 45 and 55 years old, the signs appeared earlier in the life of the paulistana, now 37, because of the removal of the ovaries — an anticipation known as surgical menopause.

The procedure, which can bring risks to the woman’s life, should be avoided. It is indicated in specific cases, warns gynecologist Ceres Resende, coordinator of the area of ​​Gynecology and Obstetrics at the Faculty of Medicine of the University of Brasília (UnB) (read more below).

Suffering from “disabling and unbearable pain” since her first period, at age 12, Adriana underwent the procedure after being diagnosed late with a serious condition that affects one in ten Brazilians, according to the Ministry of Health: endometriosis.

The problem occurs when tissue similar to the lining of the uterus grows in other parts of the body — usually around the reproductive organs, intestines and bladder. There is no known cause or cure.

Recently, singer Anitta shared living with the diseasewhich led to a surge in searches and postings on the subject on the internet and on Brazilian social networks.

Normal pain?

Since she was a teenager, Adriana reports that she heard from family, friends and doctors that what she felt during menstruation was a “normal pain, for every woman”.

“I wondered if the pain was that bad, I felt like a weak woman because I couldn’t stand that pain, since the others did. But the truth is that it wasn’t normal. I only got better, in some crises, when I took morphine” , describe.

The artisan says that she had to go to the hospital several times with pain in which she “begged to die” and went through dozens of doctors who “minimized” her suffering. It was only after joining a women’s Facebook group that she saw a diagnostic possibility to understand what she felt.

“I had never heard that endometriosis existed.”

A transvaginal ultrasound confirmed the suspicion. “When I found out, I was already at stage 4, which is the severe one. It had reached the bladder, the intestine, invaded layers of muscle”, she says. The average delay for the discovery of endometriosis is eight years, according to doctor Ceres Resende.

Adriana had to undergo a laparoscopy, a surgical procedure to remove foci of endometriosis and, in very serious cases, the ovaries.

‘Doctors normalize colic’

Producer and designer Ana Fontelle, 53, from Rio de Janeiro, experienced a similar situation. She says that, since she was 12 years old, with menstrual pain and severe episodes of bleeding, she heard that she needed to “put up with” her female condition.

“Many doctors normalize colic, give strong medicine and say that’s it. I was led to believe it was normal.”

When she lost movement in her left leg and had a large belly swelling in 2015, a medical investigation led to the discovery of endometriosis. Initially, she underwent treatment for the sciatic nerve, with acupuncture and visits to the orthopedist.

“A doctor, who I say was my savior, discovered that endometriosis had already spread to other organs, such as the intestine, even affecting the nerves”, he says.

In a seven-hour surgery, Ana lost ten centimeters of her large intestine and had to remove her appendix, uterus and also her ovaries.

At age 47, she entered surgical menopause. Despite her age, she did not have climacteric symptoms, which is the period before and after natural menopause.

only in extreme cases

Despite cases related to endometriosis, most patients who need to have their ovaries removed and undergo surgical menopause do so for other reasons, explains Ceres Resende, from UnB.

The main ones are ovarian and endometrial cancers, benign tumors that occupy the entire organ, or even patients who undergo the procedure because it was identified by a professional who are at high risk of developing cancer (identified with genetic tests, as in the case of actress Angelina Jolie).

In cases of endometriosis, the ideal is not to have to go to the point of bilateral oophorectomy (removal of both ovaries), says Resende.

“It is very sad to see that, even today, there is the idea of ​​risk of losing an ovary because of endometriosis. You always have to try to preserve the ovarian tissue as much as possible.”

“The ideal is to have a diagnosis before, institute treatment, especially a menstrual blockage, with clinical follow-up. If you are going to undergo surgical treatment, you can do it in more than one approach, you don’t need to remove all the endometriosis. You can remove a part to try to preserve the ovaries , wait and do a second stage”, he explains.

The doctor points out, however, that, in extreme cases, this can be a path: “For example, if you have to relieve a pain that disables the life of this woman”.

sudden changes

Unlike natural menopause, in which women experience symptoms gradually over the years in the climacteric, the changes are sudden with the removal of the ovaries.

Without organs, women miss the main source of hormones like estrogen and progesterone. The procedure also eliminates the menstrual cycle.

“This sudden withdrawal triggers sudden symptoms. A more intense wave of symptoms comes, because she had normal hormones and, suddenly, you withdraw them suddenly”, says Resende.

Among the most common consequences are sweating, sleep disturbances, risk of mood swings, decreased libido, vaginal dryness and burning, and urinary incontinence.

Adriana Tigre says that, three months after the surgery, she started to feel much older: “I feel like a 70-year-old lady in a 37-year-old body”.

“First, there was a lot of headache, then I swelled up a lot, I was very hot, like my body was on fire, I was nervous about anything, leg pain and very indisposed, tired, with weak arm”, she says.

The removal of the ovaries can lead to a greater risk of osteoporosis and cardiovascular problems, such as heart attack, according to published studies.

“The ideal, as far as possible, if the patient has no contraindication, is that she receive hormone replacement therapy, as soon as the ovaries are removed”, explains Resende.

Surgical menopause can also lead to depression.

Mother of one boy, Adriana had plans to have two more children before the surgery. But she says that her experience was traumatic, because the doctors did not clearly inform her about the stages and consequences of the surgery, which led her to a depressive condition: “It’s hard to have to abandon plans, to see people my age going out, having fun. ..But I have no energy”.

Without strong physical symptoms of the surgical menopause, Ana Fontelle also says that she went through mental health problems after the procedure, more related to her “self-esteem as a woman”.

After the removal of the ovaries, Ana reports “relief” with the pain. Adriana, on the other hand, went through periods with fewer crises, but continues to suffer.

In most women, the symptoms of endometriosis subside after menopause (surgical or not). But, like Adriana, some continue to have pain.

This usually happens because, although the lesions are less active with the lack of hormones, they will still be there. That is, although menopause can help with symptoms, it is not a cure.

Endometriosis warning signs*

• Change in pain characteristics (usually more intense after age 25);

• More localized pain, with one side that hurts more;

• Deep pain during and after sex;

• More prolonged bleeding.

* Source: Ceres Resende (UnB)

Text originally published on the BBC News Brazil website.