Don’t suffer in silence, learn about endometriosis

March is a very important month on the fertility calendar – Endometriosis Awareness Month. Endometriosis or endo, can be a crippling disease, causing painful periods and often painful sex. Many people are unaware that it can also affect fertility.

“Endometriosis is a disease that only affects women. It’s an inflammatory condition and we think it may be linked to the immune function,” medical director of the TT IVF and Fertility Centre Dr Catherine Minto-Bain told Newsday.

“When you have endo, cells just like those from the lining of the womb, grow in another part of the body, where they’re not supposed to be. When those cells survive in the wrong places, they behave just as they would do if they were in the womb. They match your menstrual cycle, and grow and bleed each month,” causing irritation, damage and often pain. In the body’s attempt to heal the area damaged by the endometriosis, scar tissue is formed, causing more problems and pain. Endo can also cause abdominal bloating, diarrhoea, constipation and bladder symptoms. But, she said, sometimes some women with endo have no symptoms.

Symptoms include:

* Pain in the lower tummy or back that’s usually worse during your period

* Severe period pain that prevents normal activities

* Pain during or after sex

* Feeling sick or suffering constipation or diarrhoea during your period

* Very heavy periods

“Problems getting pregnant or recurrent pregnancy loss or miscarriages can also be a sign of endo. It can affect the lining of the womb and make it hard for the embryo to implant and grow in the uterus.”

Endo typically affects the pelvic area and reproductive organs, but it can be found anywhere. “There are even rare occasions where it causes bleeding in the lungs and brain,” Minto-Bain said.

Endo usually grows in and around the surface of the pelvic organs; its often found in the ovaries, where it may form cysts; it can be found embedded in the muscle tissue of the womb and can cover the ligaments supporting the womb; it can also be found growing on the neck of the womb, the cervix and the vagina. In rare cases it starts to grow in a surgical scar – like in a C-section scar or hysterectomy scar on the abdomen.

Things people should know about endometriosis

* At least ten per cent of women have endometriosis.

* It takes an average of seven years to get diagnosed with endometriosis.

* The majority of women diagnosed with endometriosis are between ages 20 and 50, but it also happens to teens.

* There are medical and surgical treatments for endometriosis.

“It’s difficult to pin down endo statistics because many women with endo don’t show any symptoms. Plus, awareness of endo is low, so some women with symptoms think they just have period pain and don’t visit their doctor.”

She said because it’s a woman’s condition that involves sex, periods and infertility, endo still remains a taboo topic.

“So we need to remove the stigma. The first thing we need to get out there is that bad period pain is not ‘part of being a woman.’ Endo is a medical condition should be treated with sympathy, understanding, investigation and treatment. “

Scientists don’t know exactly what causes it, but they think it’s a combination of genetics and problems in the immune system.

“We do know that endometriosis runs in families. If your mum or sister has endo, you have a higher chance of having it too.”

How is endo diagnosed?

Very often endometriosis is diagnosed by symptoms along with a gynaecological examination and a pelvic ultrasound scan. Sometimes other imaging is needed like MRI scans. But the most reliable diagnosis involves a biopsy.

“If it’s endo, you might find white, red, black or blue spots, or scar tissue. You might see damaged looking areas or areas of increased blood supply. And you might see an endometriotic cyst in the ovary,” Minto-Bain said. Not every woman with endo will suffer infertility, but about 50 per cent of women with endo will have difficulty getting pregnant. Scar tissue from endo can block your tubes, which stops the egg and sperm from coming together to achieve fertilisation. Sometimes the bleeding and toxic chemicals released into the pelvis by endo can affect the sperm and interfere with fertilisation. Endo can damage the lining of the womb, stopping a pregnancy from growing, and it can damage your eggs.

“My advice is that if you’ve been diagnosed with endometriosis, and you hope for children in the future, you should quickly see a fertility specialist for a blood test to check your egg numbers.”

While egg freezing can be expensive, there are some small risks, and there’s no guarantee that you’ll get a pregnancy, Minto-Bain said fertility experts generally agree that women with endo should seriously consider egg freezing while they’re young.

“That’s because the science tells us that women with endo are much more likely to need frozen eggs, because they have a higher chance of running out of good-quality eggs earlier than other women. So if you have endo, and you can do it, you should try to freeze your eggs in your 20s – ideally before 25. This is when women with endo should still have some good quality eggs, although I have seen women, even at 25 years old, have problems with low egg quality and trouble getting pregnant but it is rare.”

She said if you’re older than 25 with endo, egg freezing can still be an option up until your mid-30s, but your eggs might already be showing signs of damage and may be less able to make you a baby in the future.

She said while there are other treatments in terms of preserving your fertility for the future, egg freezing is the best.

“The options for each person will depend on their particular case.”

But not everyone wants to have children. Some women just want the pain to go away.

“Sadly there’s no permanent cure for endometriosis but there are treatments. It’s really important to have a doctor who is skilled and knows a lot about endometriosis.

“The goal of endo treatment can be to relieve pain, to allow you to enjoy lovemaking, to control abnormal bleeding or to get pregnant. Or all of the above. So the specific treatment depends in part on what the objective is.”

This can range from medicine to surgery.

“Sometimes it’s just a matter of pain medication. Then there are hormonal treatments ranging from contraceptive pills, other hormonal pills to injections. Surgery options include surgery to remove the endo, usually done via laparoscopy. And then the most invasive option is a hysterectomy with removal of the ovaries.”