Jennifer Kastner of ABC 10 News San Diego reached out to Bloomin’ Uterus to see if we had any of our local Endo Warriors that had treated with Lupron Depot. Several of us had and jumped at the chance to share our experiences on the drug.
Five EndoSisters, Jennifer, and her cameraman Adam met for a two-hour interview one afternoon early this year. It was an incredible experience. We each had the opportunity to share our Endometriosis stories and our experiences on Lupron Depot.
One Sister has chosen not to take Lupron and talked about her battle with physicians to respect that decision.
The 2-hour Q&A session was paired down to a 5-minute investigative report. Jennifer did a wonderful job of fitting in a bit of our stories, as well as covering the side effects of Lupron, and the havoc it can cause.
If you’d like to watch the interview and read the more in-depth written report, please check out ABC 10 News’ page.
I’m grateful to Jennifer and Adam for reaching out to us and dedicating their afternoon to our interviews and for their weeks of investigative research. And I’m so proud of, and equally grateful to, our EndoWarriors who were able to join me that day: Melinda, Amanda, Brooklyn, and Linda – I love you. And am so pleased that you’re a part of my life.
Thank you for all that you do. Together we can achieve great things!
You may have seen news articles and press releases flying around the Internet since yesterday regarding a new drug released to manage Endometriosis pain. I wanted to share this with you because, although I’ve no intention of taking the drug myself, I know that it may help women who suffer. And it may help better educate you on your decision.
I’ve been following it for a while and you can read my thoughts about AbbVie’s SpeakEndo commercials and website, as well as their expedited application for FDA approval, and the track records of other drugs that have done the same. And according to Business Insider, Orilissa may cost approximately $850 per month, or roughly $10,000 per year for prescriptions (I’m assuming those figures are calculated without health insurance). Orilissa is estimated to hit markets for prescriptions in August of this year.
So, here you go:
On July 23, 2018, the Food & Drug Administration approved AbbVie’s new drug to treat Endometriosis pain. You may have seen it referred to as Elagolix, but it has been officially named Orilissa. It is an oral GnRH antagonist.
Please do your own thorough research before talking to your physician.
In the Resources section below is a link to the FDA’s drug fact sheet, which includes a .pdf of the pamphlet that should come with the drug. Read it. Review the clinical trials. And decide for yourself. You can read the .pdf which I have downloaded, or by accessing the FDA’s site and downloading it for yourself.
It appears it has limited allowable dosing (6 months to 2 years), may cause liver issues, may cause bone loss, may cause depression and suicidal thoughts, and may interact with hormonal birth control. Some adverse reactions during clinical trials included appendicitis, abdominal pain, back pain, hot flashes, night sweats, nausea, decreased bone mass density, headache, insomnia, mood swings, depression, lack of a period, anxiety, joint pain, decreased libido, diarrhea, weight gain, dizziness, constipation, and irritability.
One participant in the clinical trials committed suicide two days after she stopped treating with the pill. She was 44 years old, had treated for one month, and had no medical history or life stressors that would have been indicative of suicidal thoughts.
Where did I get all this info? The FDA drug pamphlet.
Don’t trust me, read it for yourself.
Weigh the pros and cons.
And talk to your doctor.
A February 2019 study showed that women in Phase 3 Trials of Elagolix had improved period pain and non-period pelvic pain than those who were given the placebo pill. It stated that most adverse events were mild to moderate, but there was a risk of bone loss among patients.
We are our best advocate. Do what you feel is best for you. But, please, do it informed and do it safely.
Knowing how poorly my body handled Lupron Depot (another AbbVie product that is incredibly similar), and how I became so severely depressed and suicidal on it, I will never again subject my body to something similar. It did nothing in the long-term to stem my Endometriosis. And was an incredibly difficult journey while on Lupron, as well as a long while before my body cleared itself of any side effects. That is why I choose not to take Orilissa. The decision is an individual one. Never again. But, again, I will never tell you not to try something; it may very well help you cope with your symptoms. Understand, though, that it is a band-aid. It will mask your symptoms; not clear your body of Endometriosis. I learned that one the hard way…
If you do your research and make a well-informed decision to start (or not start) Orilissa, I wish you all the best of luck and health. There are no judgments here. Only well-wishes.
And, if you wish to see a quick snapshot of the participants and findings of the two clinical trials, please visit this FDA page.
**Updated February 5, 2019**
AbbVie – (July 24, 2018; Press Release) AbbVie Receives US FDA Approval of Orilissa (elagolix) for the Management of Moderate to Severe Pain Associated with Endometriosis
Business Insider (July 24, 2018; Article) A New Treatment for a Condition that Can Feel Like Tiny People Skating on Razor Blades in Your Stomach and Affects an Estimated 200 Million Women Just Got Approved
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
As many of you know, I was on Lupron Depot for six months for my Endometriosis. I wrote about my personal experiences hereand also how my life had changed after my last injection (you can read that, and other’s experiences, here).
Recently, a friend of mine learned he will be starting Lupron Depot to treat his prostate cancer. My husband was surprised this morning when I told him. He didn’t realize the drug’s original purpose was to treat cancer…in men! And it’s because of the connection with cancer that many people think Lupron Depot is chemotherapy. It isn’t.
So, today’s blog entry is here to accomplish a few things:
Discuss the origins and history of Lupron Depot;
How it morphed from a cancer treatment to a treatment for hormonal issues (such as Endometriosis, fibroids, and central precocious puberty); and,
Clarify why I think Lupron Depot is not considered chemotherapy.
I am in no way encouraging or discouraging the use of Lupron Depot in your treatment regimen. This will not be a commentary piece about the pros & cons of the drug. The decision is yours. Research the drug, the side effects, and have lengthy discussions with your physician.
Let the research begin!!
What is Lupron Depot? In a nutshell, it’s a drug delivered by injection that shuts off your hormones. In men, testosterone; in women, estrogen. It’s not an easy treatment to endure, that’s for sure…but every person is different in how their body reacts to the drug.
When was Lupron Depot created?
In 1977, two companies, Takeda (Japan) and Abbott Laboratories (USA), came together and formed TAP Pharmaceuticals, Inc.
In 1985, Lupron Depot was approved for the American market to treat prostate cancer. Over the years, label improvements, dosage changes, and better syringes were approved by the FDA.
In 2008, Takeda and Abbott ended their joint venture of TAP Pharmaceuticals. Abbott Laboratories retained “the Lupron franchise.”
In 2013, AbbVie emerged from Abbott Laboratories and took over the manufacture and distribution of Lupron Depot.
When was it approved for prostate cancer treatment?
In 1985, Lupron Depot was approved to treat prostate cancer.
If it’s not chemotherapy, what is it?
I’ve talked to nurses and doctors about this question multiple times. I’ve done research. And I am strongly opinionated on the subject.
It’s a hormone therapy drug. It works with the pituitary gland and shuts down the body’s ability to produce testosterone or estrogen. That suppression, in theory, gives the body a fighting chance at beating the cancer because those cells are no longer being fed the hormone it desires so badly to grow. Lupron Depot does nothing to physically attack cancer. It simply alters the body’s ability to create hormones that may feed cancer cells. This starvation effect can either slow or shrink the cancerous growths.
It is notchemotherapy. I repeat: it is not chemotherapy.
Chemotherapy medications attack the cancer cells directly. Lupron Depot is a supportive medication that may starve the cancer cells. It’s like comparing apples and oranges.
When was it approved for Endometriosis treatment?
The best I can find, Lupron Depot was approved by the FDA in 1990 for treating Endometriosis.
When was it approved for Central Precocious Puberty?
In 1993, Lupron Depot-PED was approved by the FDA to treat a childhood hormonal imbalance called Central Precocious Puberty. What’s CPP? It’s when children who are younger than 8 or 9 years old (depending on their sex) show signs of puberty and sexual maturity. Lupron Depot suppresses the hormones, thus suppressing the pace of puberty.
[I know I said I would keep the commentary to myself, but I have to voice this one: I could not even imagine a child going through the side effects I went through…breaks my heart.]
There! I’ve accomplished what I set out to do today. *whew* If you’re reading this and I got my dates wrong, please feel free to correct me. If you’d like to express how Lupron Depot has affected YOUR life, please do so by clicking here.
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
Today’s story is a bit different. Meet, Terry, a 72-year-old man from California. Terry was diagnosed with prostate cancer and was prescribed Lupron Depot as part of his treatment. He would like to share his experience with us today, as well as pose a question to all of you:
I had prostate cancer and opted for the radiation (43 days) and Lupron Injections for two years – every six months. I was able to withstand the first two injections but the side effects were so bad, I told the doctor to discontinue.
I was due for my third injection on June 15th, 2016 – its now August 6th and I still have side effects. At the height of my pain, there were hot flashes, joint pain in hips, knees, feet, chills, fatigue, burning urine, loose bowels, and would get up 10 times at night. Some of the side effects have decreased, however, the fatigue is extreme. Still having to go to the bathroom all through the night and loose bowels.
The doctors never mentioned any of the less common side effects. Hopefully, it gets better?
If YOU would like to give Terry some encouragement and discuss your side effects and how long they took to dissipate (assuming they have), please email him here. He would love some hope and encouragement. And I know so many of you who offer hope and encouragement.
And if you would like to share your story, click here.
For those of you who have Endometriosis or know someone who does, Bloomin’ Uterus and The Pharmacists Clinic will be hosting a workshop about hormonal therapy and Endometriosis on August 31st. Even if you cannot attend the event : If you have questions about any hormonal therapy, whether it be birth control pills, IUDs, implants, Lupron Depot, Letrozole, Depo Provera, or others, please feel free to email Dr. Raffie at firstname.lastname@example.org. She will do her best to address the question in the presentation. We’ll be taking detailed notes and will write a post-event summary, too. And if you’re in the San Diego area and are interested in attending the event, let me know. I can send you more info.
August 31, 2016, from 6:00pm-7:00pm (you can arrive as early as 5:45pm)
Mission Valley Library; Seminar Room A; 2123 Fenton Pkwy, San Diego, CA 92108
Join us to discuss Endometriosis treatment options with clinical pharmacist, Dr. Sally Rafie. Our focus will be on hormonal therapy, such as hormonal birth control and other hormone regulators. We will review effectiveness, side effects, and common concerns.
The talk will be interactive and casual, so please send in your questions in advance (to email@example.com) or bring them with you!
IMPORTANT: seating is severely limited. As of this moment, there are only 9 seats available. If you RSVP and need to cancel, please let me know so I may review the waiting list. You will receive a confirming message from me that you are on the seating list, as well as my telephone number. You can either RSVP on our Facebook event page https://www.facebook.com/events/1022030877903809/ or by emailing me directly at firstname.lastname@example.org.
We would like to thank Dr. Rafie and Sama for all of their help in coordinating this event.
I was contacted by one of our readers who shall remain anonymous. She suffers from Polycystic Ovary Syndrome (PCOS) and Bipolar Disorder. Her OBGYN suspects she has Endometriosis; however, she had to return to college out-of-state and wasn’t able to have her diagnostic surgery. In the meantime, her physician is encouraging her to remain on birth control pills to suppress the possible Endo symptoms. Her symptoms are worsening…
She had heard that there may be a link between Endometriosis and Bipolar Disorder, and that it may be difficult to treat both at the same time due to complications with the medications interacting with each other, or even cancelling the medicinal effects of the pills.
She piqued my interest. And the research begins! Is there a link? What about negative interactions with medication? What can she do now?
If you’re reading this, you’re probably already familiar with Endometriosis. But what is bipolar disorder? I’ve heard of it, but haven’t actually asked what it is.
It’s considered a chronic illness which affects the brain and moods, often switching between extreme emotions : happy moods (manic) and incredibly depressed moods (depressive). They don’t know what causes bipolar disorder, but it can run in families. There are ongoing studies to greater understand and hopefully one day cure bipolar disorder. Treatments can include medications which help soothe and control moods, therapy, and/or electroconvulsive therapy.
There is; however, one very interesting theory by Dr. Jory Goodman that many people who have been diagnosed with Bipolar Disorder have been misdiagnosed and instead suffer from hormone imbalances, including PMS and PCOS. I’m not saying this to lessen your bipolar diagnosis, if you are reading this and suffer from it. I’m simply pointing out another person’s perspective. As they say, “knowledge is power.”
There are several studies that find women with Endometriosis seem to be more prone to mood disorders. In 2006, 16 women with Endometriosis (diagnosed via laparoscopy) were evaluated. Seven of them were bipolar disorder mixed, 3 for bipolar disorder manic, and 2 suffered from major depression. Of those women, 9 had a parent, sibling, or relative who also suffered from a severe mood disorder.
In 2011, the study was revisited, but this time compared 27 women with Endometriosis to 12 women who suffered from pelvic pain, but did not have Endometriosis. It found that there was a “significantly greater proportion” of women with Endo and Bipolar Disorder than women without Endometriosis. They suggest as part of managing Endometriosis, a psychiatric evaluation may be conducted to diagnose or rule out the comorbidity (existence of 2 chronic conditions at the same time) of Bipolar Disorder.
A review of 18 English studies in 2015 found that 56.4% of women with Endometriosis met the criteria of suffering from a psychiatric disorder. It does not identify a cause/effect relationship, nor what the relation between the two conditions may be. But it is a staggering figure.
Many women who suffer from Endo and Bipolar Disorder have issues balancing out their medications. They cancel the effects of one another, or heighten the symptoms of the other disease. Doses, or types, of medication may need to be adjusted to lessen any potential interactions. It is a balance game; one which needs to be carefully monitored by your physician until a proper dosage (of either medication) can be found for you.
Are you worried about possible interactions between your Bipolar meds and Endo meds? Please, talk to your doctor. HelpGuide.com offers this amazing list of questions to ask your:
Are there any medical conditions that could be causing or exacerbating my mood swings?
What are the side effects and risks of the medication you are recommending?
When and how should I take this medication?
Are there any foods or other substances I will need to avoid?
How will this drug interact with my other prescriptions?
How long will I have to take this medication?
Will withdrawing from the drug be difficult if I decide to stop?
Will my symptoms return when I stop taking the medication?
A wonderful resource to check if your medications have interactions may be found at Drugs.com. I ran a few common Bipolar meds with Endo meds to see if they had any interactions and/or lessen their effectiveness. I’ve listed a few of them below:
Amethyst (birth control pill) & Depakote – may cause loss of seizure control, tremors, poor muscle coordination, increased seizures, and changes in behavior.
Amethyst (birth control pill) & Klonopin – may prolong the half-life of benzodiazepines in your system
Amethyst (birth control pill) & Lamotrigine – may reduce blood levels that effect lamotrigine.
Amethyst (birth control pill) & Topamax – can make birth control pills less effective.
Amethyst (birth control pill) & Xanax – may prolong the half-life of benzodiazepines in your system
Depo-Provera & Depakote – may cause loss of seizure control, tremors, poor muscle coordination, increased seizures, and changes in behavior.
Depo-Provera & Lamotrigine – may reduce blood levels that effect lamotrigine.
Lupron Depot & Celexa – may increase the risk of irregular heart rhythm, which may be life threatening.
Lupron Depot & Lithium – may increase the risk of irregular heart rhythm, which may be life threatening.
Lupron Depot & Prozac – may increase the risk of irregular heart rhythm, which may be life threatening.
Lupron Depot & Seroquel – may increase the risk of irregular heart rhythm, which may be life threatening.
Lupron Depot & Trazodone – may increase the risk of irregular heart rhythm, which may be life threatening.
Lupron Depot & Venflaxine – may increase the risk of irregular heart rhythm, which may be life threatening.
Mirena (IUD) & Depakote – may cause loss of seizure control, tremors, poor muscle coordination, increased seizures, and changes in behavior.
Mirena (IUD) & Lamotrigine – may reduce blood levels that effect lamotrigine.
Naproxen Sodium (NSAIDs) & Celexa – may increase the risk of bleeding.
Naproxen Sodium (NSAIDs) & Lithium – may increase blood levels, which effects the lithium.
Naproxen Sodium (NSAIDs) & Prozac – may increase the risk of bleeding.
Naproxen Sodium (NSAIDs) & Venflaxine – may increase the risk of bleeding.
Naproxen Sodium (NSAIDs) & Yasmin (birth control pill) – may increase potassium levels in the blood, which may lead to the development of hyperkalemia (elevated levels of potassium in the blood).
Yasmin (birth control pill) & Depakote – may cause loss of seizure control, tremors, poor muscle coordination, increased seizures, and changes in behavior.
Yasmin (birth control pill) & Klonopin – may prolong the half-life of benzodiazepines in your system
Yasmin (birth control pill) & Lamotrigine – may reduce blood levels that effect lamotrigine.
Yasmin (birth control pill) & Naproxen Sodium (NSAIDs) – may increase potassium levels in the blood, which may lead to the development of hyperkalemia (elevated levels of potassium in the blood).
Yasmin (birth control pill) & Topamax – can make birth control pills less effective.
Yasmin (birth control pill) & Xanax – may prolong the half-life of benzodiazepines in your system
If you suffer from Endometriosis and Bipolar Disorder, know a few things :
You are NOT alone. Many women have been diagnosed with both conditions;
Talk to your doctor about any potential interactions with treatments for both conditions;
Hold onto hope. There are ongoing studies and trials to help with Endometriosis and with Bipolar Disorder.
I hope I was able to answer some questions and offer some guidance today. I would like to thank our reader for bringing this to my attention. I never would have known otherwise…
(Updated March 27, 2019)
Bipolar Reddit – Bipolar & Endometriosis: Meds that Do Not Cancel One Another Out?
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
Thanks ObamaCare. Due to changes in insurance coverage and expenses, my employer has changed my insurance plan. It’s the same carrier, but the plan has altered slightly. What does that mean for my coverage?
Thankfully, I still can see my same physicians, although my physician co-pays have all increased by about $10. I’ve no clue how any medical procedures will be affected financially. BUT what I do know : my insurance will no longer cover my Amethyst birth control. Sure, it’s free. Sure there’s all this legislation and praise about free birth control…but my insurance refuses to provide Amethyst anymore.
Instead, I’m going on a generic of my generic (Amethyst is the generic version of Lybrel). What’s the name of my new birth control? It doesn’t really have a name. Emblazoned on the prescription box is “Levonorgestrel and Ethinyl Estradiol 90 mcg/20 mcg tablets.” That’s the name of my new BC. It’s a tongue twister, and it’s the same dosage of my Amethyst pills…but…
Not all generics are the same. Fortune magazine states, “The [FDA’s] definition of bioequivalence is surprisingly broad: A generic’s maximum concentration of active ingredient in the blood must not fall more than 20% below or 25% above that of the brand name. This means a potential range of 45%, by that measure, among generics labeled as being the same.”
I haven’t had my period since September, 2014. I have been taking Amethyst since January, 2015. I haven’t spotted. I haven’t had any break-through bleeding. And best of all I haven’t had any terrible Endo symptoms. I’ve had a few flare-ups, but nothing unbearable.
So today I start my new pill. Last night I said goodbye to my last Amethyst pill. Tonight at 6:00 pm, I’ll swallow this new tiny pill…hoping that my body won’t have to adjust. Hoping for no raging hormones, no spotting, no periods, but most importantly : no Endometriosis symptoms. It’s been wonderful having 99.9% of my life back. Will see how my body adjusts to this new medication. Hoping for the best.
What about you? Have you switched pills and suffered?
Thanks for reading. Today I am just venting because I’m worried. Worrying accomplishes nothing and I was hoping by writing it all out I’d feel better. I think it’s helped already 😉
One of my local EndoSisters has started a new medication to help with her Endometriosis pain and symptoms, based upon the recommendation of her new physician. It’s Letrozole, which I had never heard of. And she asked me if I had any info on it…so…now I’m inspired to do some research!
What is Letrozole?
Letrozole is the generic name for Femara, a drug classified as an aromatase inhibitor. What is aromatase? It’s an enzyme that is crucial in the creation of estrogen. Aromatase inhibitors have been FDA approved for treating breast cancer in post-menopausal women. However, it has piqued the interest of the medical community in controlling Endometriosis symptoms. It is not yet FDA approved for this treatment, but is used as an off-label, accepted treatment among the medical community. As of today’s research, there are no indications that drug manufacturers are going to seek FDA approval for aromatase inhibitors to treat Endometriosis.
Endometriosis has been theorized to be a largely estrogen-driven disease. Aromatase has been found in increased amounts in the endometrial tissue of women with Endometriosis, as opposed to women without. Some physicians are now prescribing aromatase inhibitors when no other traditional treatments have helped with a woman’s Endometriosis symptoms. The hope is that by inhibiting (blocking) aromatase production, it will ease Endometriosis symptoms and progression. Aromatase inhibition may give rise to ovarian stimulation (widely used to increase fertility) and ovarian cysts; and therefore are often used in combination with other drugs, such as Norethindrone (progestin), Zoladex (GnRH agonist), or birth control pills to help women with Endo to avoid further production of painful ovarian cysts, etc.
Specifically, Letrozole has been known to cause fatigue,drowsiness, and dizziness, especially when combined with alcohol or when the person is exposed to heat. A woman who is newly taking Letrozole must be cautious when driving until she truly knows how her body responds to the medication.
The FDA has released an entire list of side effects women complained of while treating with Letrozole for their breast cancer: angina (chest pain), arthritis, bone fractures, cerebrovascular/TIA (similar to a stroke), constipation, diarrhea, endometrial cancer, endometrial proliferation disorders, fractures, dizziness, edema (swelling), fatigue, headaches, hot flashes/flushes, light-headedness, myalgia (muscle pain), myocardial infarction (heart attack), nausea, night sweats, osteoporosis, other cardiovascular issues, other endometrial disorders, thromboembolic event (strokes), vaginal bleeding, vaginal irritation, vomiting, and weight increase. Some women have also complained of a decrease in their libido.
When used in combination with a progestin or birth control pill, aromatase inhibitors do not cause osteoporosis; however, if used with a GnRH agonist, osteoporosis may develop. Your physician may recommend frequent bone scans to ensure bone loss is not occurring while treating. They may also recommend you take Calcium and Vitamin D during your treatments.
RXList.com has an ongoing list of testimonials and reviews of women who take Femara (Letrozole) and what their experiences and side effects have been. I know that my EndoSister’s going through a lot of joint pain at the moment. Almost everyone complained of bone and joint pain; stating:
“Then–suddenly I was having bone pain in legs (felt like someone took a 2×4 and whacked me across the leg bones)–joint pain in shoulders, knees, ankles, feet, and fingers.”
“I started having joint pain in the knees, feet, and fingers. Also fatigue and muscle weakness. Feel like I have aged 10 years.”
“I have experienced severe bone and muscle pain to the point that I find it difficult to walk up and down stairs.”
“I hurt so badly I could barely get out of bed or walk down the halls at work”
Many women stopped taking the drug because of the intensity of the side effects and posted their reviews on RxList.
In 2004, a pilot study was published in the Fertility and Sterility journal on the effectiveness of managing Endometriosis symptoms using Letrozole. The study involved 10 women who did not respond to surgical or medical treatment of their Endometriosis. They were given 2.5mg of Letrozole, 2.5mg of Norethindrone, as well as Calicum Citrate and Vitamin D supplements for six months. The study concluded that there was a “marked reduction of laparoscopically visible and histologically confirmed endometriosis in all 10 patients and significant pain relief in nine out of 10 patients who had not responded previously to currently available treatments,” and they strongly urge the use of this regimen in treating Endometriosis symptoms.
Another study in 2004, again published in the Fertility and Sterility journal, followed the treatment of two women. They were given Anastrozole (a different aromatase inhibitor), as well as a progesterone pill, calcitriol, and rofecoxib for three months. Both of the women had a rapid reduction in their pain and symptoms, and remained so even 24 months after receiving the treatment. One underwent a diagnostic laparoscopy 15 months after treatment and was confirmed free and clear of any Endometriosis implants. Both women were able to conceive within 24 months of treatment.
The Middle East Fertility Society Journal published an article in 2014 which reviewed several different types of drugs emerging in Endometriosis treatment, including aromatase inhibitors. It also summarizes several past studies regarding Endometriosis and aromatase inhibitors.
In 2015, a study was published in BioMed Research International of a clinical trial of Letrozole and its effectiveness in decreasing the size of endometrioma (blood-filled cysts). The lead author of this study is also the doctor whom prescribed Letrozole to my EndoSister who inspired today’s blog. It was a three-month study of eight women, each of whom agreed to the “off-label and unproven therapy,” in the hopes it would reduce their Endometriomas and Endometriosis pain. They were given daily 5mg doses of Letrozole, as well as daily 5mg doses of Norethindrone (the FDA-approved “add back” therapy used with Lupron Depot). A typical daily dose of Letrozole is 2.5mg, but since this study was only three months long, they upped the dosage. And Norethindrone was used “…to minimize the negative effects of induced hypoestrogenemia and thus make the letrozole therapy more tolerable.” Hypoestrogenemia is a deficiency of estrogen in the blood. Over the three-month period, they found the Endometriomas decreased by 50%, and the women had significant reductions of pelvic pain and painful sex. More studies are needed, including double-blind tests with placebo, as well as longer studies, and smaller doses. It is their hope that these studies will lead to a lesser need for surgical intervention in suppressing the pain and manifestations of Endometriosis.
I encourage you to look online for a plethora of additional studies regarding aromatase inhibitors and Endometriosis.
Although the treatment of Endometriosis with aromatase inhibitors is not approved by the FDA, and there’s no indication that such approval will be sought, the studies and trials do appear to support the notion that they help reduce and control the pain and progression of this disease. If you are able to swallow the idea of an experimental drug, you may want to talk to your physician about this treatment regimen.
~Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician (or in this case, attorneys). Always. Yours ~ Lisa