Will Endometriosis Ever Go Away?
Does Endometriosis Go Away?
In a single word, no.
Endometriosis doesn't go away—and if it is ignored it will typically continue to grow.
Unfortunately, too many doctors and parents claim that period pain is "normal." Heavy or irregular bleeding is often ignored.
But endometriosis can cause serious problems, including:
- chronic pain
- irreversible damage to the organs inside the pelvis
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 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.
The symptoms of endometriosis may be chronic, throughout the month, or occur at specific times during the menstrual cycle.
Most women who suffer 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 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.
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.
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.
Although improvements have been made in ultrasound and MRIs, they are unreliable.
Unfortunately, my extreme endometriosis has never appeared on any non-surgical test.
Endometriosis hell - when doctors ignored my pain
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 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 was so severe.
The surgeons could not remove the growths because the endometrial cells were fed by a huge array of blood vessels.
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 not improved.
I could not believe it when these top endometriosis surgeons told me the pain was "in my head"—imaginary pain.
Severe consequences for ignoring endometriosis
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.
I had to cope with chronic, severe pain and undergo two more endometriosis-removal operations before I was allowed to have a hysterectomy at age 38. They still wouldn't take my ovaries out, because I am too young.
I am now unable to have children, because my period pain was ignored by doctors.
Does endometriosis ever go away?
During pregnancy, the lining of the uterus is not shed, therefore the endometriosis growths do not bleed. They gradually shrink throughout the pregnancy, and may cause fewer problems after delivery. Unfortunately, many women with endometriosis have trouble getting pregnant until the endometriosis is removed via surgery.
Endometriosis is fed by estrogen, therefore the problem will reduce during and after menopause (when estrogen production slows). If hormone replacement therapy (estrogen) is used, it may feed the endometriosis, even after a hysterectomy.
Taking a progestin pill (Visanne) continuously, or a 3 month contraceptive injection (Depo-Provera), or a 3 year implant (Implanon), may slow the growth of endometriosis.
More recently, the Mirena IUD, which releases progestorone into the uterus, has also been shown to control endometriosis growths. All of these methods may have side effects.
Personally, the Mirena has been a life saver for me - reducing my constant heavy periods to only 10 days of medium flow, every month.
Endometriosis: true or falseview quiz statistics
March is Endometriosis Awareness month, where many events and conferences are held worldwide.
Update: October 2012
My abdominal and period pain is increasing, and the adenomyoma cysts are getting bigger. Doctors are adding Visanne to my medications, to try to slow or halt the adenomyosis growth. It's still too early to tell how well, or even if, this will work.
Update: November 2012
Two surgeons are now concerned that the endometriosis has returned, this time it's interfering with my digestive tract - the sigmoid colon and rectum. I'm currently undergoing a barrage of tests to get a diagnosis for my worsening digestion symptoms.
Update: February 2013
After all colon imaging and lab tests were negative for known diseases, , the endo surgeon is keeping me on Visanne for another 3 months. If I break through regularly, then she will most likely schedule a laparoscopy, with a bowel surgeon in attendance to do a resection of the part that has regrown endo through it.
Update: April 2013
With cyclical breakthrough bleeding from the bowel, the head surgeon, bowel specialist and head gynocologist at the university hospital all agree - the endometriosis has regrown, and this time through the bowel wall. They've given me two options - hysterectomy and bowel resection now, or risk losing a significant portion of my bowel as the endo continues to grow.
Update: February 2015
Operation number 6, this time more endometriosis removal and a total laparoscopic hysterectomy - finally the adenomyosis is gone. Ovaries stay in, as I'm too young, and both removal and/or HRT would equally encourage endometriosis regrowth. Unfortunately, there was no endometriosis to be seen in or on my bowel, so no (visible) explanation for the cyclical bowel bleeding. But at least I didn't get a bowel resection!
Unfortunately, endometriosis cells were found in biopsies taken from "clear" sections of my pelvic walls. I have to stay on Visanne until I go into menopause.
Endometriosis never goes away, even if you don't ignore it!
- Recognising, understanding and managing endometriosis, I.S. Fraser, et.al., Journal of Human Reproductive Science, July-December 2008, 1(2):56–64.
- Endometriosis and infertility, C. Bulletti, et.al., Journal of Assisted Reproduction and Genetics, August 2010, 27(8):441–447.
- Appearance of abdominal wall endometriosis on MR imaging, M.P.H. Busard, et.al., European Radiology, May 2010, 20(5): 1267–1276.
- The Diagnosis and Treatment of Deep Infiltrating Endometriosis, H. Gülden, et.al., Deutsches Ärzteblatt International, June 2010, 107(25): 446–456.
- Endometriosis, a modern syndrome, I. Brosens and G. Benagiano, The Indian Journal of Medical Research, June 2011, 133(6):581–593.
- Bisphenol A: An endocrine disruptor with widespread exposure and multiple effects, B. Rubin, Journal of steroid biochemistry and molecular biology, Oct 2011;127(1-2):27-34.
If you have endometriosis
What's your experience with endometriosis?
Did your doctor's ignore your pain too?
Share your stories below!