March is Endometriosis Awareness month, where many events and conferences are held worldwide.
Endometriosis affects around 1 in 10 women worldwide, and can be a debilitating disease, with pain, heavy menstruation and infertility being the most common symptoms.
Although the cause is not yet known, endometriosis is when the endometrial cells, normally lining the uterus and shed during a period, grow in places they shouldn't:
- inside the abdomen, outside the uterus;
- on the bladder or bowel walls;
- on the outside surface of the ovaries and fallopian tubes;
- and less commonly, on the outside surface of the liver, kidneys and diaphragm.
These endometrial lesions bleed during menstruation, leaking blood into places where it shouldn't be, causing scars and adhesions to form - in turn causing more pain.
It doesn't go away
Endometriosis is a chronic disease - it doesn't disappear if you ignore it.
In fact, it can become very serious when the endometrial cells invade muscle walls (adenomyosis) or other organs in the abdomen.
Please don't ignore period pain or heavy bleeding - get it checked out.
Mine turned into level 4 (extreme) endometriosis and severe adenomyosis, because I was told the pain was 'normal' and to 'just put up with it' for 7 years.
A hysterectomy is also not a cure. The endometriosis cells outside of the uterus will still grow with the remaining estrogen you have, even if you have your ovaries removed. Although, a hysterectomy does cure adenomyosis, a related disease.
Most doctors recommend a combination of laparoscopic surgery to remove the existing growths, and medication treatments to control further growth of the endometrial lesions, although surgery for endometriosis is often kept as a last resort if medications fail.
No one knows what causes endometriosis, why some patients have extreme growths, why others have no pain. Both the medical and natural health communities are still searching for answers. No cure for endometriosis has been discovered, only medications and therapies than may help manage the symptoms.
Disclaimer: I am not a doctor or pharmacist, although I have extensive experience with endometriosis and adenomyosis (see notes in each section below).
Please see your doctor to get a diagnosis and appropriate treatment.
One of my favourite books about endometriosis - easy to read, funny and informative, written by an author searching for treatment for herself. This was the one book that explained endometriosis to my mother, who, many years into my treatment, still believed that my period pain was 'normal' and I was being a hyperchondriac.
What stage endo do you have?
The following medications are often prescribed to endo patients, to both ease the symptoms and control the growth of endometriosis.
Note: None of these medications cure endometriosis, they only treat and control the symptoms. There is no current cure.
I've listed them in order from treating mild cases, to strong medications for extreme cases.
Most common endometriosis medications
Mild endo - Estrogen and progestin
Moderate endo - Progestin only
Severe endo - Menopause inducing
Daily birth control tablets
Daily tablets (Visanne)
3 month injections (Lupron)
Weekly birth control patches or rings
Injections (Depo-provera) or impants (Implanon)
1 month implant injections (Zoladex)
Stronger prescription pain medications
Progestin-containing IUD (Mirena)
- NSAIDs such as ibuprofen, or stronger medications, are often prescribed to help reduce the pain, and the inflammation associated with bleeding into spaces where blood shouldn't exist.
Long term use of anti-inflammatory medications can damage the stomach lining and kidneys, so they are not recommended for continuous use.
- Paracetamol (acetaminophen, Tylenol) or other mild pain medications are also recommended to reduce the pain during menstruation.
These pain medications only mask the symptoms, and do not act on the endometriosis growths.
Treating mild endometriosis
Birth control pills to slow the growth
When initially searching for a diagnosis, to control period pain (dysmenorrhea) and heavy or long bleeding (hypermenorrhea), birth control is often prescribed.
Most standard birth control medications contain both estrogen and progestin (synthetic progestogen) in varying amounts.
High estrogen pills should be avoided by endometriosis patients, as estrogen encourages endometriosis growth. Low estrogen / high progestin pills may control the growth of endometriosis, when it is not severe.
Many patients are asked to take the pill continuously - skipping menstruation altogether.
My BCP rollercoaster
I think I tried at least 15 different birth control pills over a 6 year period, in an attempt to control extreme bleeding and pain, before other medications were considered.
None stopped the pain or the bleeding. And in fact, I bled for 2 years straight, without a break, despite taking these pills!
By spending so much time on 'just trying another one', and not following other diagnostic channels (ultrasound, MRI, laparoscopy), my endometriosis was allowed to grow to extreme levels.
Finding a pill that works best to balance out hormone levels, however, is not easy, with many patients jumping between different brands.
Blood tests that show hormone levels can help with appropriate choice, but most doctors (in my experience) don't prescribe these tests.
Some patients do well. Others, may develop (mild) side effects: acne, weight gain, nausea, migraines and high blood pressure are some of the more common ones.
Common birth control pill alternatives
- A skin patch, applied once a week for three weeks, then a week break for menstruation.
- Vaginal ring, left in place for 3 weeks, then removed for menstruation.
Treating mild-moderate endometriosis
Progestin-only pills, injections and implants to mimic pregnancy
Avoiding estrogen in medications often work better for endometriosis patients. Endo is an estrogen dependent disease - too much estrogen allows the endo lesions to grow.
My current endo medications
After six operations, three courses of the strong medications in the next section, plus 9 years of the Mirena IUD, there are still endometriosis cells in my pelvis, as shown from the most recent biopsies taken during my hysterectomy.
Visanne (in addition to the Mirena) managed to stop my periods, despite a number of side effects. But it hasn't stopped the bowel bleeding.
After a short break to recover from the operation, I'm back on Visanne, and will be until I reach natural menopause.
Progestin (synthetic progestogen) tricks the body into believing it is pregnant, stopping ovulation and menstruation.
Daily progestin-only pills, are helpful in alleviating endometriosis symptoms, often more so than estrogen/progestin combination pills.[2,4]
The most recent progestin-only pill, Visanne, uses a different type of progestin. Visanne is the first medication to specifically target endometriosis, and is slowly being approved around the world. However, this is not a birth control pill, other contraceptive measure should also be taken.
Long term medications
- A 3 month injection (such as Depo-provera), was shown to be just as useful as progestin-only daily pills in reducing endometriosis symptoms, but has increased side effects.[2,5]
- A 3 year implant (such as Implanon), can be injected under the skin in the upper arm, and slowly releases progestin into the body. It also has increased side effects.
Although breakthrough bleeding and spotting is common, many endometriosis patients are happy with how it controls symptoms.[2,3]
- The 5 year slow-release Mirena IUD, deposits progestin directly into the uterus over time. This method is recommended for women who have adenomyosis, as it lessens bleeding significantly.[2,4,5]
I'd recommend that insertion is done under anaesthetic - my first was done 'in the chair' with no anaesthetic, and it was the most painful thing in my entire life!
The longer-term medications are certainly easier than remembering to take a daily pill, and may be effective for light to moderate cases of endometriosis, as the body is tricked into not ovulating and avoids menstruation.
Treating severe endometriosis
Severe endometriosis is usually treated with a combination of the medications below, and the surgicalremoval of endometrial lesions and cysts via laparoscopy.
Menopause inducing medications
There are some extremely strong medications, tricking your body into producing menopause-levels of estrogen. Of course, you get all the menopause symptoms - hot flushes, vaginal dryness, mood swings, memory problems, etc.
1. Gonadatrophin-releasing hormone agonists (GnRH-a) have a lot of additional side effects, some severe. They suppress the pituitary gland, to reduce estrogen production.
Zoladex (goserelin acetate) was originally developed to treat prostate and breast cancer, but has been useful in reducing endometriosis and adenomyosis growths. It is also used when then blood supply to endometrial lesions prevent safe removal in operations.
A hellish medication
Zoladex is an awful medication. It felt like it was beating my body and it's systems up, as if it was a pro-boxer.
A 3 month treatment in between operations 2 and 3 and another 6 month course after operation #5, left me never wanting another course, even if I was allowed!
The full spectrum of menopause symptoms, plus extreme nausea, dizziness, memory problems, non-functioning immune system, and more, were not helped, even with the add-back dose of estrogen.
But, it allowed the endometriosis to be removed in surgery, and did shrink the adenomoyomas in the second course.
Unfortunately, the endometriosis lesions started growing in my bowel around 2 years after my second Zoladex treatment, and the adenomyomas are starting to regrow.
As it can substantially decrease bone density, and increases the risk of osteoporosis, a maximum treatment of two 6-month courses is recommended in a lifetime. Although for difficult cases, this is often extended.
It is injected monthly, as a slow-release implant, into the fatty tissue of the stomach.
In cases where menopause symptoms are too severe, additional estrogen tablets may be recommended. Whether this affects the performance of the goserelin acetate, is unclear.
Other GnRH-a medications
- Lupron - 3 month injection into a muscle (typically stomach)
- Synarel - twice-daily nasal spray.
- Elagolix - tablets or capsules twice a day, currently undergoing clinical trials in the US.
2. Danozol uses testosterone to reduce estrogen production to menopause levels, and is occasionally recommended when treating difficult endometriosis cases.
However, it has a large number of serious side effects and is not well tolerated, therefore Danozol is not often recommended.
What medications have you taken to 'treat' your endometriosis?
- Estrogen metabolism and action in endometriosis, Rizner TL, Mollecular and Cellular Endocrinology, 2009 Aug 13;307(1-2):8-18
- Modern combined oral contraceptives for pain associated with endometriosis. Davis L, et.al., Cochrane Database Syst Rev. 2007 Jul 18;(3):CD001019.
- The effects of implanon in the symptomatic treatment of endometriosis, Ponpuckdee J, Taneepanichskul S, Journal of the Med. Assoc. of Thailand, 2005 Oct;88 Suppl 2:S7-10.
- Progestagens and anti-progestagens for pain associated with endometriosis, Brown J, et.al., Cochrane Database Syst.Rev. 2012 Mar 14;3:CD002122
- Levonorgestrel-releasing intrauterine system (Mirena) and Depot medroxyprogesterone acetate (Depoprovera) as long-term maintenance therapy for patients with moderate and severe endometriosis: a randomised controlled trial, Wong AY, et.al., Aus & NZ Journal of Obstetrics & Gynaecology, 2010 Jun;50(3):273-9
- Endometriosis, Fritz MA, Speroff L, Clinical Gynecologic Endocrinology & Infertility, 2011:8, 1221-1248. (GnRH-a success)
Have you have surgery for endometriosis?
Which medications have you taken to treat endometriosis?
How did they work for you? Side effects?
Did they reduce or get rid of your endometriosis?
Please share your stories in the comments below!