Lifestyle changes can provide relief from endometriosis

Grace Nagawa (32) is the founder of Endometriosis Foundation Uganda. A nurse at Rubaga Hospital in Kampala, Nagawa was diagnosed with the disease at 27 years of age although she had had signs of endometriosis from the time she started her period at 14.

“As a young girl, I expected to bleed normally but for my first period, I got black spots instead of blood. I was also in so much pain and the period lasted two weeks. I could not even go to school because I was vomiting and had diarrhoea,” Nagawa recalls.

For the next three months, she did not get her period but when they resumed, the pain was still severe. Because her mother was a nurse, she would always get her strong pain killers although these did little to stop the pain that would usually occur before and after her period. After several visits to different hospitals, she was told she suffered from hormonal imbalance while others said she had pelvic inflammatory disease.

One day, Nagawa suffered severe cramps and rushed to hospital where a CT scan showed a mass of blood that had burst in her uterus.

“I was then diagnosed with stage four endometriosis. My intestines and ovaries had been severely affected and the doctor said I would live with this pain for the rest of my life unless I sought treatment abroad,” she says.

Back home, she tried taking all kinds of herbal concoctions and different painkillers to no avail. An injection given to stop the menstruation also led to severe hot flashes. All her family could do was helplessly watch as she suffered until her brother gave her the contact of a gynaecologist in Kenya.

“The doctor recommended surgery to remove the pockets of blood and this reduced the pain. However, the surgery cost Shs30m and my family had sold most of our properties in order to foot the bills,” she adds.

After the surgery, Nagawa says, her period normalised. “I had never seen red blood before. Now, I get many pain-free days compared to the daily pain I had before the surgery. 

The doctor told her that it was not a complete cure and recommended some medicines and some lifestyle changes such as diet, exercise and avoiding stress.

What is endometriosis?
The endometrium is a layer of cells that lines the uterus. It supports the implantation of the embryo during conception and in response to oestrogen, the cells in this layer multiply and thicken every month. When no conception takes place, the cells are shed off the uterus as menstrual blood.

According to Dr Joseph Kafuuma, a gynaecologist at Women’s Hospital International and Fertility Centre in Bukoto, Kampala, endometriosis is a chronic condition where the endometrial cells, which should only be found in the uterus, grow outside the uterus. 

These cells can be deposited on the outer layer of the uterus, fallopian tubes, ovaries (where they cause ovarian cysts), the inner muscle of the uterus, bladder, vagina, intestines, naval, pelvic wall, lungs or brain.
“During menstruation, blood will also be shed from the places where the endometrial cells are deposited. Since the blood in the new location has no outlet such as the uterus, blood settles in the surrounding tissues causing irritation, inflammation and formation of scars and blood-filled cysts and with time, they can become masses in the different parts of the body,” he says.

Women with endometriosis have difficulty conceiving because of the damage to the ovary and fallopian tubes. Endometriosis takes several stages including stage one where the deposits are minimal and no adhesions appear. 

In stage two, the deposits are slightly deeper and the adhesions are present. At stage three, the endometrial deposits form blood filled cysts in one of the ovaries and filmy adhesions may be present. Stage four is severe endometriosis with large blood-filled cysts and adhesions and may require multiple surgeries. 

Prevalence
Globally, one in every 10 women of reproductive age has this condition and it is one of the leading causes of infertility. In Uganda, statistics are wanting but it is a common occurrence according to Dr Kafuuma, especially among women seeking fertility treatment. About two to three out of 10 women that seek fertility treatment suffer from endometriosis. 

“It mostly affects women in their reproductive age (12 to 45) because it is hormonal dependent and lesser in women who are in their menopause because their oestrogen levels drop,” he says.

However, Dr Kafuuma adds that “About 80 per cent of the endometriosis cases are often misdiagnosed as urinary tract infections or pelvic inflammatory infections in incidences where the endometrial cells are deposited in the bladder or pelvic wall. This is because such people often develop lower back pain or chronic pelvic pain just like with infections.”

Women of reproductive age (between 12 to 51 years) are vulnerable and oftentimes are diagnosed after a long time (between 25 to 35 years).

Causes
The cause for the deposit of the endometrial cells in other areas other than the inner lining of the uterus is not known. Dr Joseph Nsengiyumva, a gynaecologist at Bethany Women’s Hospital in Luzira, says genes from first degree relatives play a big role. If your mother or sister has the condition, it is very likely that you will have it as well.

He says: “In some cases, it is thought that there is an upward flow of menstrual blood (retrograde) into the fallopian tubes and other parts of the body. Some endometrial cells are said to escape through the lymphatic system and are therefore deposited in the kidneys.”

Endometriosis can also occur as a spontaneous change in cells or may accidentally be transferred to the skin or naval of a woman during a uterine surgery by health workers or after giving birth.

Test
Endometriosis can only be confirmed by a simple surgical procedure called a laparoscopy. Here, a small incision is made on the abdomen where a laparascope is inserted through the cut to see through the internal organs. A small amount of tissue is removed and observed.

Signs
The signs and symptoms of endometriosis usually occur a few days, during or some days after the menstruation cycle and depend on the location of the endometrial cells. They vary in different women and while some women may experience mild ones, others experience severe symptoms. These include:
● Extremely painful periods that are worse than the usual cramps. The pain starts two or three days before the actual menstruation and persists for some days after the bleeding.
● Bloating, nausea and vomiting during one’s period.
● Difficulty breathing, coughing of blood, chest pain, headaches associated with the period.
● Pelvic, lower back or abdominal pain, painful sexual intercourse, chronic diarrhoea or constipation when the cells are deposited in the intestines, bleeding from the naval or surgery scar during menstruation, failure to conceive and dizziness and fainting during periods.

Prevention and treatment
Prevention of endometriosis according to Dr Nsengiyumva is not possible because its cause is not known but the treatment is aimed at reducing pain and improving quality of life. It may involve relieving pain, delaying periods using pills or any other hormonal treatment and helping the woman conceive using IVF.

Pregnancy is said to reduce the symptoms of endometriosis but it is not a cure since the pain returns after giving birth. 

Surgery can be performed once the condition is in the late stage and the woman is failing to respond to the painkillers, Dr Kafuuma advises. During the surgery, the endometrial tissues are removed through laparoscopy and once they are removed, there is a said improvement in the chances of fertility and reduced pain. 

“It is important to note that surgery is not a cure and after about two years, the pain may return, especially if you are suffering from a severe stage of the condition,” he says.

Home-based care
Since there is no particular treatment for endometriosis, home-based care can help relieve the pain according to Grace Nagawa. 

“Stress, sitting for a long time, dairy and wheat products aggravate the disease. Any food that is likely to cause inflammation brings pain,” she says.

She recommends walking or jogging for about 30 minutes daily. It is also important to note that strenuous exercise and lifting heavy items can also aggravate the condition.

“When in pain, especially during menstruation, take a warm bath or apply a warm compress on your abdomen using a towel or hot water body with a cloth wrapped around it to avoid burns,” she advises.

Also, reduce your intake of caffeinated drinks, sugar based beverages, dairy products, red meat, trans fats and gluten (wheat based foods). Instead, eat a balanced diet with more fruits and vegetables, get enough rest and have a pelvic massage using castor oil to relieve back and abdominal pain.