Introduction to endometriosis and adenomyosis
What are endomeriosis and adenomyosis and what treatments are available?
This post will contain photos of the blood-filled endometriosis lesions taken from within my pelvis during several laparoscopies. Do not read this if you are squeamish!
What Is Endometriosis?
Normally, endometrial cells grow in the endometrium—the lining inside the uterus which, when healthy, thickens and sheds in a monthly cycle. Endometriosis occurs when endometrial cells grow where they shouldn’t—in places other than the uterus lining.[1,2,4] Endometriosis most commonly forms in the abdomen, the pelvic cavity, on the outside surface of the uterus, the walls of the abdomen, on the walls of the bladder and bowel, on the fallopian tubes and outer surface of the ovaries, and on any muscles and tendons that hold the organs in place.
It forms lesions and “chocolate” cysts (because the dark blood is a chocolate color). As the lesions grow over time, the endometriosis penetrates deeper into the abdominal cavity and tissue.
Each month, these endometriosis growths bleed—the blood goes into the abdominal cavity causing serious cramping, scars and adhesions, sticking organs together.
In long-term serious cases, the endometriosis can penetrate the walls of the organs (bowel, bladder, etc.), requiring major surgery to remove the damaged sections and repair the organs.
Stages of endometriosis
| Stage | Description |
|---|---|
| Stage 1 (minimal) | A few surface lesions and weak adhesions. |
| Stage 2 (mild) | Stage 1 lesions and adhesions, plus some deeper lesions. |
| Stage 3 (moderate) | Stage 2 plus more strong adhesions and endometriosis on the ovaries. |
| Stage 4 (severe) | Large areas covered with deep endometriosis, many strong adhesions. |
| (Stage 5 extreme) | Suggested by my surgeon—other organs involved, adenomyosis, surfaces covered in diffuse and deep endometriosis. |
Endometriosis symptoms
The symptoms of endometriosis may be chronic, throughout the month, or occur at specific times during the menstrual cycle. Most women who suffer from endometriosis have one or more of the following symptoms:
- debilitating menstrual cramps every month
- chronic pain throughout the monthly cycle (pelvis, abdomen and back)
- bowel and intestinal pain and symptoms, similar to IBS
- painful or urgent urination, similar to a urinary tract or bladder infection
- heavy, long or irregular periods
- pain or spotting during ovulation
- large blood clots during periods
- irregular spotting throughout the menstrual cycle
- pain during sex
Who Gets Endometriosis?
It is estimated that up to 10% of women, or more, suffer from endometriosis.[2,4] Doctors don’t know why some women get endometriosis and others don’t—the cause of endometriosis is currently unknown.
However, there is some evidence that endometriosis may be hereditary—the risk of a person developing endometriosis is higher if their mother had endometriosis.[1]
Some studies have recently indicated that molecules from plastic that break down in heat can mimic estrogen and may contribute to hormone problems, such as endometriosis.[6]
Luckily, I have a fantastic plastic-free kettle now, but I wonder how much my all-plastic kettle has contributed to the severe endo.
How Is Endometriosis Diagnosed?
Endometriosis can only be diagnosed with 100% certainty via laparoscopy using a camera inserted into the abdomen via small cuts and a biopsy of tissue samples.[1]
Although improvements have been made in ultrasound and MRIs, they are unreliable.[2] Unfortunately, my extreme endometriosis has never appeared on any non-surgical test.
What does endometriosis look like?
You can only see endometriosis when you cut into the pelvis.
An endometriosis laparoscopy
The patient is given a general anaesthetic before the surgeon makes a few small incisions - at least one in the belly buton and one lower. Then the pelvic cavity is pumped up with gas. A camera with a flashlight can be used by surgeons as they investigate (through the belly button), and tools through the other ‘keyholes’ are manipulated to cut out or burn out endometriosis lesions.
At the end of the operation, an anti-adhesion powder may be blown into the cavity, then the gas is extracted and the patient is sewn up.
Stage 4 (5) endometriosis - bloody lesions, cysts and adhesions are smeared all over the inside of the pelvic walls and organs
What does adenomyosis look like?
Adenomyosis is where uterine cells that normally grow on the surface of the uterus grow inside the uterine muscle wall. Think of severe bruise - you’ve broken blood vessels under the skin, but the blood can’t exit the skin. In adenomyosis, these cells bleed inside the muscle, but the blood can’t get past the muscle wall.
The outside wall then appears all lumpy and uneven - in the surgeon’s own words, “boggy”.
Surgeons can then take biopsies for the lab, samples from the uterine muscle where it is uneven, to see if adenomyosis/endometriosis cells are in the muscle.
Endometriosis hell - Doctors ignored my pain
Unfortunately, my story is far from unique.
It takes on average, 8-10 years for doctors to take patients with period pain seriously before endometriosis is diagnosed. With 1 in 10 (or likely more) women having endometriosis, that’s abuse on a massive scale.
I had painful, heavy periods from the moment they started. I was told over and over again by doctors and family that the pain was either ‘normal’, or ‘all in my head’, and refused to investigate.
I was told to ignore it.
At age 15, the monthly pain was so debilitating that doctors decided to ‘treat’ me with the contraceptive pill. At age 19–21, I bled and spotted constantly, every day for two years, breaking through all the medications that various gynecologists wanted me to try.
No doctor or specialist suggested endometriosis until I was 24, and a diagnostic laparoscopy was ordered.
The next two operations showed I had endometriosis, the worst that the surgeons had seen. A new stage of endometriosis was suggested because the lesions, cysts, adhesions and organ involvement were so severe.
The surgeons could not remove the growths because the endometrial cells were fed by a huge array of blood vessels.
Chemical Menopause
To shrink the blood supply, making it safe to remove the endometrial growths that covered all the surfaces of my abdomen, I was put into a chemically induced menopause with a drug normally used to treat prostate cancer. The side effects were almost unbearable.
A third operation removed most of the endometriosis. After a few months of recovery, my pain pattern had changed (the pain was mostly at the end of menstruation) but had not improved.
I could not believe it when that top endometriosis surgeon told me the pain was “in my head”—imaginary pain.
Better surgeons
A new surgeon and another operation discovered extensive diffuse adenomyosis—the rogue endometrial cells had buried themselves deep into the uterus muscle wall. Such adenomyosis is only treatable with a hysterectomy, but I was only 26, far too young.
In addition to severe pain, adenomyosis causes infertility, high rates of miscarriage and birth defects due to the damaged muscle and an impaired blood supply.
Had doctors discovered and removed the endometriosis before it got so extreme, the adenomyosis would not have developed.
Permanent side effects
I have had to cope with constant, chronic, severe pain and heavy bleeding and undergo far too many endometriosis-removal operations before I was allowed to have a partial hysterectomy at age 39 and oopherectomy at at 47. They still wouldn’t take my ovaries out, because I am too young.
I was and am unable to have children due to the severe endometriosis and adenomyosis, because my period pain was ignored by doctors in my teenage years.
In treating the endometriosis conservatively with hormones (Zoladex, Lupron, Visanne and Mirena), I developed many lasting side effects. The worst of which were lasting lipedema, and two different types of breast cancer tumors in my left breast - requiring more operations, complications and even more chronic life-long pain.