Endometriosis is a gynaecological condition in which cells from the lining of the uterus (endometrium) start growing outside the uterine cavity, in the ovaries or around the uterus in the abdominal cavity. These endometrial cells are controlled by female hormones.
In endometriosis, every time a woman has her period, there is bleeding inside the ovary or around the uterus in the pelvic cavity where these endometrial cells have abnormally placed themselves. The reason why endometriosis affects the ovaries is that they have the highest levels of hormones compared to any other organ in the body, and hence are the ideal environment for the growth of the endometrial tissue. (Read: Top 15 women’s health concerns)
It affects 10–15 percent of women during their reproductive years. Considering we have 12 periods in a year and if, for instance, the problem of endometriosis starts around the age of, say 28, the woman is going to suffer for many years as with each menstrual period, blood will accumulate in an area outside the uterus such as the ovary.
The causes of endometriosis are still unknown, although there are many theories. One theory suggests that during menstruation some of the tissue backs up through the fallopian tubes into the abdomen, a sort of reverse menstruation, where it attaches and grows. Other than genetics, women who’ll give birth for the first time after 30 and women with an abnormal uterus are at the risk of developing endometriosis.
Several studies have shown that the incidence of endometriosis is much higher in women who have a sister or a mother suffering from the disease. A study carried out in Reykjavik by deCODE Genetics and Iceland’s National University Hospital indicate that a woman is five times more likely to develop endometriosis if her sister has the condition, and even a cousin with the disease can raise the risk by more than 50 percent.
You are at an increased risk of endometriosis, if -
• Your menstrual period started early.
• Your mother or sister has endometriosis.
• Your menstrual cycles are frequent and you bleed for a long time.
• You have never been pregnant.
• You have an abnormality from birth in the uterus that blocks menstrual flow.
Endometriosis is considered a non-cancerous cancer. The disease, of course, won’t kill you, but it is very progressiveand damaging. It’s like an inflammation inside your body. In severe cases, which are becoming more common thesedays, all the organs in the pelvic cavity are stuck to each other. The tubes and the ovaries get stuck; then sometimes,the intestine gets stuck to that. There have been instances when we open up the woman to remove endometrial cystsand come across a jam inside the body. We just don’t know where to begin. We call this situation a frozen pelvis. It means that everything is frozen and jammed inside. It’s like a big ice block. We can’t even put the laparoscope insideor differentiate where the uterus begins and the tubes end. That is, of course, an advanced stage of the disease. But we see a lot of damage even in patients who haven’t reached that stage yet. (Read: Tried and tested tips to reduce pain during menstrual periods)
With every period cycle, there is an increase in the damage. For the woman, the menstrual period becomes very painful and the period pattern also changes. Because of the intense damage it causes, endometriosis can cause infertility.
Endometriosis is one of the most common problems that gynaecologists currently face and it is responsible for a significant portion of gynaecological surgeries each year. It is one of the most complex and least understood diseases in our field and, despite many theories, we still do not have a clear understanding of its relationship to infertility.
The disease progresses at a very fast pace and before you know it, large chocolate cysts are formed. They are called that because blood, after a period of time, starts to look like dark chocolate. Sometimes, we find large 8 cm or 10 cm cysts. And soon they’ll start taking up the entire space of the ovaries. The ovaries are normally between 2 cm to 3 cmin size. And if inside a 2 cm ovary there’s a 10 cm cyst, there’s nothing left of that ovary. (Read: Miscarriage – causes, symptoms and treatment)
For many women suffering from endometriosis, severe pelvic pain is the main symptom. The pelvic pain typically starts to intensify before the period and increases in the next few days. After periods, the pain reduces. The amount of pain a woman experiences is not necessarily related to the severity of the disease—some women with severe endometriosis may experience no pain, while others with a milder form of the disease may have severe pain or other symptoms.
Other symptoms of endometriosis include pain during passing stool or while urinating, premenstrual spotting, frequent or heavy periods, and pain during intercourse. Some women experience constant pelvic soreness or pain in the lower back that radiates down each leg. Apart from these, women also experience:
- Spotting before the period.
- Irregular and heavy periods
- Swelling and bloating in the lower abdomen
- Blood in the stool during period
- Infertility or difficulty in becoming pregnant.
Endometriosis can be diagnosed clinically with sonography. You can see the endometriotic cyst on the scan and even the large size of the uterus can be picked up in a sonography. There’s also a blood test tumour marker called CA125. It is usually used for ovarian cancers. But this is also elevated in endometriosis.
Unfortunately, there is no permanent medical treatment for endometriosis. There is no way we can control this condition. Till the time the woman will have her period, she will continue to suffer. The only thing we can do from a medical standpoint is to stop the period.
Contraceptives: When a woman is younger, we can give her continuous contraceptive pills. Usually, a woman takes contraceptive pills for 21 days, then takes a break to have her period, and then continues them again. But in this case, she takes the pills for months and sometimes even years continuously without stopping to get her menstrual period.
Continuous use of progesterone hormone would also have the same effect. So when we stop the period, at least the disease won’t progress. The disease is still there in the body, but won’t cause the woman discomfort. (Read:Pain during sex – 6 causes and solutions that can improve your sex life)
GnRH medications: There is also a drug called GnRH Analog, which is one of the mainstays of the disease treatment. These are once-a-month or once-in-three-months injections which put the woman into menopause. They prevent the pituitary glandfrom secreting the controlling hormones FSH and LH. This stops the ovary from producing oestrogen.
Once the body’s hormones are down to the menopause level, there is no period. This gives the patient relief. But this also gives the woman all the symptoms of menopause like hot flashes and vaginal dryness. The moment we stop the drug and the period starts, everything goes back to the way it was.
Typically, patients treated with GnRH Analogs will experience a relief in symptoms for a few years after which most patients experience a resurgence of symptoms. We bring about temporary menopause because we need to give the patients temporary relief. If I operate on a 28-year-old woman for the first time, by the time she is 32, she will again face the same symptoms and problems. And then I will again have to operate on her by the time she is 35. It’s not wise to operate on a woman again and again. So I just try to delay the symptoms as much as possible with medicines.
Surgical process: All these surgeries are done laparoscopically and we are usually able to remove the disease, helping the patients do well for a couple of years. Fertility is the main reason why this is done in younger patients. Fertility is always impaired in such patients. As soon as the surgery is done, we ask patients to immediately try to get pregnant—naturally or with IVF.
We are talking about this disease in the 40's because it keeps coming back. So even though you may have had your firstsurgery in the 20s or 30s, we will eventually have to deal with them again in the 40s.
If these women have been fortunate enough to see a pregnancy through this, they remain fine during that time because they don’t have their menstrual periods during pregnancy. By the time the woman is done with the family, she’s completely fed up because of multiple surgeries.
Along with endometriosis is a condition called adenomyosis. The only difference between this and endometriosis is that in adenomyosis there is bleeding within the walls of the uterus. So during every period, the bleeding takes place within the uterus. With every period, the uterus swells more and more and small pools of blood form within it. As the uterus becomes larger, it causes more and more pain to the woman because the uterus gets stretched every time she gets her period.
I’ve known of women who are actually rolling on the ground because of the pain. Surgical treatment of adenomyosis is difficult as the disease is usually diffused. If the adenomyoma is localized in a part of the uterus, it can be removed surgically, though the surgery is complicated.
It’s a disease that starts in the reproductive age group. A woman in her 40s has had adenomyosis for some years, fertility issues, and maybe even surgery for it. The uterus is probably large now and she’s had pain for years. If the blood accumulation is localized, we can remove it by adenomyomectomy using a laparoscopic or open surgery.
But in most cases the whole uterus is damaged. And the only treatment left is hysterectomy and to remove the ovaries as well. Usually, in a hysterectomy, we keep the ovaries in the body, but in this case there’s no option but to remove them as ovaries are most often affected. (Read: Gallery: 10 tips to age healthy)
Endometriosis is most often found in the ovaries, but it can also be found in other places like the intestines, rectum, urinary bladder, vagina, cervix, vulva, and abdominal surgery scars. It’s rare, but it happens. Almost 90 percent of endometriosis develops in the uterus.
Since it’s such a debilitating disease, this is the only condition where women look forward to menopause. Because once she has menopause, the disease will not progress and will slowly regress; the uterus will begin to shrink and she’ll be a lot better off when she’s fully into menopause. (Read: What is laparoscopic surgery?)