Disclaimer: I am not a doctor, the information on these pages is gathered from my own experience, books, websites, and other people's experience. I will not be held responsible for any injury resulting from this information. If you have a medical condition, you should seek qualified medical advice and supervision at all times.
What is Endometriosis
Endometriosis is the growth of uterine lining on other surfaces in the pelvic region. It generally grows on the pelvic walls, the outside of the uterus, the bowel, bladder, sometime kidney and stomach. It can be found in various other places around the body, like the lungs or the brain, but those cases are extremely rare.
It generally occurs in women, 1 in 4 women will suffer endometriosis. It typically occurs between the ages of 13 and 50 (beginning menstruation until menopause). It is common that pregnacy will remove the disease, but not in all cases.
- Important! If you ignore endometriosis, it does not go away - it simply gets worse and worse, and will grow into adenomyosis.
Endometrial tissue (the uterine lining) follows a cycle, getting thicker throghout the month then shedding/bleeding during menstruation. Endometrial growths outside the uterus bleed at the same time, in areas where blood isn't meant to go, usually causing varying levels of pain and scarring.
The scar tissue (or adhesions) are 'sticky' and often cause things like the ovaries and fallopian tubes to be joined to the wall of the pelvis, or the uterus, or the bowel/bladder etc. These should be free to move, and once stuck down, mobility is reduced and pain can be caused when the adhesions are stretched or broken.
A good way to describe endometriosis, is that it is like a cancer - it is cells growing where they shouldn't. It causes internal bleeding every period.
It can occur alongside adenomyosis (pockets of malformed cells inside the wall of the uterus - causing pockets of blood to form during a period and restricts the utering muscle from contracting), fibroids, cysts, cancer, and various other pelvic problems.
It can cause infertility (many infertility patients have been found to have endometriosis, and once it is removed, have often been able to conceive), and debilitating pain. Chronic pain can cause all number of other complications - damaged immune system and depression being the most common. The severity of the endometriosis is no indication of the level of pain (and vice versa). Some people get continuos pain, others only get it for 1-2 days at the start of their period, some don't get pain at all, yet all could suffer endometriosis.
Endometrisis can grow back after it is removed within 6 months, and there are a number of treatments and endometriosis medications to slow down this regrowth.
Doctors have no idea what causes endometriosis, but you are more likely to get it if someone in your family has had it, and if you take a longer time to get pregnant. Detection and diagnosis is only certain with laparoscopic surgery and tissue analysis, although extremely bad cases may appear in ultrasound and MRI tests.
How is it detected?
Until recently, if you had painful periods doctors often said "That's normal", or "It's not painful". Many still react like that. If you do have painful periods, the tests you can do are:
This may have to be an internal ultrasound, which can be extremely painful, however the results rely on the quality of the equipment and the experience of the doctor reading the images, so it may not be very reliable.
This is rarely used for endometriosis, more often for adenomyosis. This test is not subsidised by Medicare in Australia in any way, so is often prohibitively expensive. As with ultrasounds, decent results rely on the experience of the doctors evaluating the images, but may detect adenomyosis fairly reliably these days.
Keyhole surgery, the most reliable method. The diagnosis still depends on the skill of the surgeon if the endometiosis is mild and hard to see.
CA125 blood test
This is actually a cancer indicator that can sometimes be used to detect endometriosis, but is extremely unreliable. Cancer Antigen 125 is released from damaged ovaries, for someone who has never had cancer, the average level is under 35.
For someone with cancer, the level would be at least 1500, and for endometriosis may be around 80, but it is a very imprecise test. More often it is used to monitor the endometriosis after diagnosis (to see if it goes up and down on removal, and may indicate when it grows back). More information.
How is it treated?
The preferred method of treatment is to surgically remove the growth during a laparoscopy, using scalpels and/or a laser. A biopsy can also be done on the growths when removed to test for cancer and to make sure it is endometriosis.
After surgery, the birth control pill or Visanne (progestin only pill) is often used to control the growth as higher levels of progesterone seem to inhibit endometriosis growth. Sometime the pill will be given to teens suffering symtpoms as surgery is usually left until later.
If something prevents surgery - like too many blood vessels feeding the growths that would bleed too much if severed, a treatment of Lupron or Zolodex is administered. This artificially induces a menopause which shrinks the blood vessels feeding the growths, and sometimes even shrinking the growths. Both medications have long lasting side effects and should be used with care. Treatment time for Zolodex can be 3-6 months, anything over 6 months would cause osteoporosis.
There are natural alternatives that may help with the symtoms. However, there is no scientific proof that they help with the disease. Altering diet to be healthy, full of whole foods, no dairy, no sugar, no wheat, no fat or combinations of these seem to help a number of people. As does regular exercise, also important for those who have been on Zolodex treatments to help prevent osteoporosis. You can get natural progesterone cream which many claim help with the pain (along the same lines as how the pill helps).
- EndoNatural is a mailing list dedicated to dealing with endo symptoms as naturally as possible.
- The Adenomyosis mailing list is a wealth of information for this disease for which not much information is available.
- Endo-resolved - a useful site and forum for endometriosis and adenomyosis sufferers.
- Center for Endometriosis
- Endometriosis FAQ
- Endometriosis Care Centre of Australia - specialists and surgeons
- EndoFoodClub - Dealing with endometriosis through diet
- Endometriosis: Natural and Medical Solutions - Kaz Cooke and Ruth Trickey - A very well written no-nonsense guide about endometriosis and how to deal with it. Contains excellent advice about diet, lifestyle and managing pain.
- Women's Trouble: Natural & Medical Solutions - Kaz Cooke and Ruth Trickey - Dealing with various problems that women may face, including endometriosis, again very well written.