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These are medications such as:
- GnRh drugs (Agonists: Lupron, Zoladex, Synarel, Prostap. Antagonists: Orlissa, Myfembree, Ryeqo, etc) that lower estrogen, often to menopausal or near menopausal levels.
- combined hormonal contraceptives (this can be a pill, transdermal patches, or vaginal ring)
- progestins (Visanne/Dienogest, Depo Provera, the Mirena IUD, etc)
Hormonal suppression only manages the symptoms of endometriosis.
And only in some people – not everyone sees symptom relief on these medications. Additionally, any symptom relief is usually temporary and typically returns when the person stops the medication. Hormonal suppression may be a lifesaver for some people to help them with their symptoms.
But it’s important to understand the limitations of hormones and what they can’t do, because many doctors assume that hormonal suppression dries up endo or slows its growth, but in reality the goal of hormonal suppression is symptom management. So you may be taking hormones under the false impression that you are helping your disease, and sticking out intolerable side effects like changes to your libido or mental health, and putting yourself through negative side effects for no potential disease benefit. This is why informed consent is so important, so you can weigh potential risks vs benefits based on the facts.
If a doctor tells you that hormones treat endometriosis, the question should be: Where is the proof of this? What studies show this?
“Although the scientific community is trying to find an algorithm of treatment for endometriosis that can be universally applied, to date, there is no ideal drug that can prevent, inhibit, or stop the development of endometriosis. Almost all of the currently available treatment options for endometriosis suppress ovarian function and are not curative.” (1)
It’s super important to know that endometriosis can make its own estrogen via the aromatase enzyme, so even when a person goes into a low estrogen state due to hormonal medications, endometriosis can make its own estrogen via aromatase, which is independent of the hormone production of estrogen in the ovaries.
Hormonal suppression doesn’t remove endometriosis lesions.
However, due to misinformation, many gynecologists who are not experts in endometriosis use these various methods as ‘treatment’ for the disease itself. They often wrongly believe that endometriosis will be ‘cleaned up’, ‘dried up,’ or ‘removed’ using one of these treatments, but this is simply not true.
The “studies” on how Lupron or Zoladex shrink endometriosis are completely flawed. It does not shrink the lesions. I break down a Lupron study here, and Kate from EndoGirlsBlog breaks down Zoladex here.
Endometriosis can continue to progress while on these medications, as well as recur post-surgery.
Hormonal suppression and disease progression.
There is not a lot of information on this topic because to study disease progression, a patient would need to do repeat laparoscopies. In theory, hormonal suppression could slow progression of the disease, but this hasn’t been proven. Even if it did slow disease progression in some people, we wouldn’t know in who.
However, there are studies which show that endometriosis can still progress while on hormonal suppression. Additionally, excision surgeons see people every day who have advanced, deep disease but have taken hormones for years: patients who have been on birth control and an IUD at same time, or 9 years of Lupron, or 2 IUDs at the same time, or 13 years on birth control having been placed on it within 1 month of their first period, etc.
The American College of Gynecologists and Obstetricians (ACOG) Practice Bulletin 114 Management of Endometriosis states: “There is no data to support use of medical treatment to prevent progression of the disease.” Additionally, in the 2022 ESHRE Endometriosis Guidelines, there is no mention in the section on hormone treatments for endometriosis- associated pain that hormones slow or stop the progression of endometriosis.
Even with hormonal suppression specific to endometriosis – like Orilissa or Visanne – these only indicate in the package insert that they are for the management of endo-associated pain, with no mention of slowing or stopping disease progression.
For endometriomas specifically, see Endometriomas.
Hormonal suppression and recurrence.
For superficial and deeply infiltrating endometriosis, there is no solid proof based on good research that hormonal suppression reduces disease recurrence rates.
Endometriomas, however, can be responsive to ovarian hormones. Some studies done on endometriomas suggest that taking hormones post operatively can sometimes help to slow potential endometrioma recurrence for some people. More information on this on my Endometrioma page.
In terms of symptoms recurrence post surgery, there are various studies which show that hormonal suppression may help with additional pain relief post excision, or may extend the time a patient is pain free post excision.
Choosing what hormonal suppression to use
If you choose to use hormonal suppression to try and help your symptoms, remember that it’s truly individual, and there is no one best option for everyone. Since there are multiple kinds, people often need to do trial and error to find one that works for them. There are many options out there, much more than the doctor often presents to us. Often we don’t even get options – the doctor just tells us to take X medication (such as a Dienogest or Orilissa). These might be good options for some people, but there are many more options available as well.
Many people start with oral contraceptive pills. They are relatively cheap and typically accessible for many people. They can often be taken for years and have a lower side effect profile. Some people also find that using birth control continuously so that they don’t have a monthly bleed is more helpful for their symptoms.
Hormonal suppression can have side effects.
For example, birth controls can deplete essential vitamins and minerals from the body. It can affect your gut, liver, immune system, mood, and more. There can also be a risk of blood clots.
When it comes to progestins (either in birth controls or in progestin only options), there are different types of progestins. Each is associated with different blood clot risks, advantages, and disadvantages. Long term use of progestin-only option may cause bone mineral density loss. Talk to your doctor about side effects and read the medication’s package insert, and talk to your doctor about having a bone density scan periodically to check your bone density if on progestins for a prolonged period.
GnRh drugs that lower estrogen – often to menopausal levels – tend to have more side effects than other types of hormonal suppression. The prescribing information of these drugas have a long list of potential side effects, including suicidal thoughts or actions, bone mineral density loss, abnormal liver scans, hot flashes and night sweats, headache, nausea, difficulty sleeping, absence of periods, anxiety, joint pain, depression, and mood changes.
How effective is hormonal suppression for symptom management?
Multiple studies have shown that different types of hormones can improve a patient’s quality of life and help reduce pelvic pain.
For example, Buggio et al. did a review on available progestins for endo management. The material used in their review was from studies on PubMed from pubmed’s starting date of 1996 to February 2017. Their review included both oral and injection progestins, including oral norethisterone acetate, dioenogest, desorgestrel, cyproterone acetate, depot medroxyprogesterone acetate (DMPA), as well as levonorgestrel-releasing intrauterine system (LNG-IUS), etonorgestrel subdermal implant. Those researchers concluded that all available progestins are effective in controlling pain symptoms in two-thirds of people with endometriosis. There wasn’t enough robust data to say that one progestin was better than the other, so they concluded that oral norethisterone acetate should be considered the first by the patient because of the favorable cost-effectiveness profile. (2)
GnRh drugs can have serious, long-term side effects that continue even after stopping the medication. Make sure to research in depth to understand the risks/benefits before deciding to use them. Orilissa was only released in 2018 and we don’t have info yet on potential long term side effects like we do for Lupron. See the resources below.
The FDA only approved Lupron for 6 months without add back therapy, and 12 months with add back therapy. Orilissa is only approved for 6 months for the high dose, and 2 years for the low dose. Myfembree and Ryeqo are also only approved for 2 years. This is due to the risk for bone loss on this drugs.
GnRh drugs are supposed to be second-line therapies, meaning that they are prescribed when first-line therapies (oral contraceptive pills and progestins) are ineffective, not tolerated or contraindicated. Yet some doctors put their patients on these right away, as soon as they suspect endometriosis, and for much longer than the FDA approved time frame.
Additionally, various studies comparing GnRh drugs to other hormonal medications such as the Mirena, Dienogest, Depo Provera, combined birth control pills, and others, have shown these other hormones (which a patient can be on for longer and that have a much lower side effect profile) to provide similar symptom relief to patients as GnRh drugs. This is another reason why GnRh drugs are second-line therapies, but unfortunately many gynecologists are giving them out as soon as they suspect endometriosis, without any conversation around the side effects, treatment time limitations, or equally viable options.
No medication can diagnose endometriosis
Some doctors say that if a patient (who is still undiagnosed with endometriosis) has pain relief on Lupron, it confirms that they have endometriosis, but this isn’t true. There are other reasons as well why a person’s pain could go down in a low estrogen state. As stated in the previous section on diagnosis, the only way to have a confirmed diagnosis of endometriosis is through a laparoscopy with a pathology report.
Gheorghisan-Galateanu AA, Gheorghiu ML. HORMONAL THERAPY IN WOMEN OF REPRODUCTIVE AGE WITH ENDOMETRIOSIS: AN UPDATE. Acta Endocrinol (Buchar). 2019 Apr-Jun;15(2):276-281. doi: 10.4183/aeb.2019.276. PMID: 31508191; PMCID: PMC6711644. Accessed Dec 2021.
- Donnez J, Dolmans MM. Endometriosis and Medical Therapy: From Progestogens to Progesterone Resistance to GnRH Antagonists: A Review. J Clin Med. 2021 Mar 5;10(5):1085. doi: 10.3390/jcm10051085. PMID: 33807739; PMCID: PMC7961981. Accessed Dec 2021.
For More Info
- Hormonal Medication – From Nancy’s Nook.
- The Standard of Care is Not Sufficient – Post by Dr. Jeff Arrington from the CEC on how general gynecologists have been taught to treat endometriosis.
- Hormonal Therapy in Women of Reproductive Age with Endometriosis: An Update. – 2019 research article by Gheorghisan-Galateanu AA, Gheorghiu ML. Acta Endocrinol (Buchar). 2019;15(2):276-281. doi:10.4183/aeb.2019.276
- Endometriosis and Medical Therapy: From Progestogens to Progesterone Resistance to GnRH Antagonists: A Review – 2021 research article by Donnez J, Dolmans MM. J Clin Med. 2021;10(5):1085. Published 2021 Mar 5. doi:10.3390/jcm10051085
- Lupron – info and resources
- Orilissa and GnRh antagonists – info and resources
Related Podcast Episodes
- Ep 30 – Orilissa and Lupron. Part 1 – Misconceptions and Marketing
- Ep 31 – Orilissa and Lupron. Part 2A – How Effective is Orilissa?
- Ep 33 – Orilissa and Lupron. Part 2B – How Effective is Lupron?
- Ep 37 – Orilissa and Lupron. Part 3 – Side Effects
- Ep 39 – Lupron. The Potential Long Term Risks
- Ep 91 – What Can Hormonal Suppression Actually Do For Endometriosis?
- Ep 92 – Hormonal Medication Options for Endometriosis
- Ep 95 – What are Endometriosis Guidelines? Interview with Kate Boyce
- Ep 102 – Interview with Dr. Jeff Arrington on the Importance of Informed Consent