After a sobering appointment with my gynecologist I made the final decision to get the shot later that day. Lupron to many is viewed as a very scary drug, and it should NEVER be started without a thorough look at all the treatment options. It should also be started with realistic expectations. Lupron is not a cure, in the best cases it shrinks and causes some Endometriosis to die, but the only way to thoroughly remove disease is with laproscopy. If you stumbled across the article after a recommendation to start Lupron for Endometriosis, and you HAVE NOT had a laproscopy to confirm the diagnosis and excise diseased tissue please read and think carefully before consenting to Lupron. Instead you may want to find a doctor who is willing and able to perform laproscopy and excision surgery for Endometriosis.
Why Was Lupron My Best Option
I had a laproscopy and excision surgery on October 2nd for Stage 3 Endometriosis and removal of a 3cm fibroid tumor. I had dense adhesions on and around my colon though through passive inspection no Endo was found on my bowel. I had deep lesions removed from the left and right sides in the rectovaginal space, endometriosis on the back of my uterus, and on the uterine ligaments. Due to the deep lesions and suspected bowel involvement my best option post surgery was to start on birth control, as it was nearly a guarantee my Endometriosis would return without medical treatment.
The first pill I tried, Microgestin, caused breakthrough bleeding after a little over a week and my painful bloating, constipation, and pervasive pelvic pain returned. The next treatment option was trying a higher dose pill, which is also risky, while Estrogen is what is often needed to stop bleeding, it is also the fuel for Endometriosis. At the higher dose I had no bleeding, but I continued to have bowel problems, intestinal pain, and my right groin pain (which also triggers pain in my leg) began to return. My PCP who has multiple family members with Endo, and thus treats my case like a personal mission, did some serious soul searching and recommended I consider Lupron.
I agreed it was my best option because I was between a rock and a very hard place. Progestin only treatment options were likely to cause a lot of breakthrough bleeding and spotting, which I cannot have as it causes my Endometriosis to go into overdrive at this point. I also could not get any benefit from combined pills since the Estrogen dose I need to prevent bleeding is enough to feed the Endometriosis.
The final reasoning of myself, my PCP, and my gynecologist to start Lupron were as follows:
- To give my body a chance to heal, and to shrink and potentially kill as much Endometriosis as possible.
- To give my body the best chance it has to properly respond to birth control in the future.
- To test my how well my Endometriosis responds to menopause like conditions.
- To test how my body responds to menopause like conditions.
- And to allow me to mentally and physically experience what menopause will be like since I will eventually need a hysterectomy.
I’m going to go on to write about the pro’s and con’s of Lupron, and what needs to be considered as adjunct therapy when starting the drug. Though if your treatment team and you don’t have a list like the one above it may not be worth the trouble.
Lupron is Serious Medicine
Did you know Lupron is actually classed as a cancer drug? The very action Lupron has in the body is guaranteed to cause side effects as it’s very action is meant to shut down pituitary function. Lupron is classed as an Antineoplastic drug, a drug that is meant to shrink tumors. The drug is a GnRH Agonist, they first put your pituitary gland into overdrive causing a clinic flare (aka increased estrogen and increased symptoms) for the first two weeks or so of treatment. Then the body is desensitized to hormones needed in the production of sex hormones, including estrogen, leading to a hypoestrogen state similar to menopause.
My personal opinion on Lupron is that it should be used as a last resort in Endometriosis. Lupron can be downright dangerous in the hands of an inexperienced doctor, and yes Lupron can cause permanent side effects and have side effects that extend upwards a year from the cessation of therapy.
TAP pharmaceuticals, which produces Lupron, has a bad reputation and in 2001 was involved in lawsuit and received a fine of over $900,000,000. They’ve cleaned up their act quite a bit, but they can still be a bit iffy. They actually registered the domain endofacts.com, along with facts.com domains for several other conditions the medication treats. The drug is still on patent, and drug reps still actively visit OB/Gyn offices. So it is a near guarantee that there are doctors out there who are still under a drug rep spell, and still believe snake oil claims about the drug. It is important when it is being discussed as an option that the doctor is realistic about what Lupron can do, and why it is the best option.
Lupron vs Laproscopy
Laproscopy with excision of lesions is the gold standard in the diagnosis and treatment of Endometriosis. Lupron can shrink implants but cannot make them disappear. Also, Endometriosis can develop it’s own system and produce it’s own Estrogen especially in deep and well established pockets of disease. Removing Endometriosis tissue, and confirming the diagnosis is really essential. In some cases of severe lesions, or in fragile locations like the bowel or bladder Lupron may be indicated after surgery to shrink the lesions as much as possible before attempting removal. However, for many women with Endometriosis no sort of medical intervention will have max efficacy without excision surgery. Also, the idea of treating potential Endometriosis with a cancer drug for 6 months without confirmation of the diagnosis is a bit mind boggling.
Typical recovery from Laproscopy is two weeks, just adjusting to Lupron takes at least a month with menopause symptoms persisting for the duration of treatment, at times breakthrough for the next year. Most women respond well to birth control pills, and other hormonal contraceptive methods after Laproscopy. Some need no sort of intervention at all for years.
1 month vs 3 month injection
Lupron comes in a 3 month and 1 month injection. Many women prefer to at least start with the one month, in case of disaster it’s less time with it in the system! Also, I’ve read multiple accounts of women who have reported fewer and milder side effects. The estrogen spike and the course of the drug therapy in some reports appears to be milder than the 3 month injection. The one downside to the 1 month injection is in some cases there is an clinical flare in the first two months due to the lower dose the drug takes several doses to produce a consistent hypoestrogen state.
I have gotten information on the 1 month versus 3 month injection through reading LOTS of reviews, forums, etc so there is no one link I can point to. Also, my gynecologist agreed and stated he prefers the one month since it is a shorter time frame if there are serious side effects, and agrees the larger dose can cause increased side effects.
Expected Side Effects and Potential Permanent Effects of Lupron
Lupron desentizes your body’s receptors to a key hormone that assists in producing sex hormones, for women these are Estrogen and Progesterone. The hypo-estrogen state essentially produces a rapid pseudo-menopause. Therefore any expected reaction to menopause or hysterectomy is likely to occur.
- Hot flashes
- Mood Swings
- Vaginal Dryness
- Loss of Sex Drive
- Hair Loss
- Bone Loss
Many of these side effects can be tempered through add back therapy, and other medications (more in next section). However, Lupron also can potentially trigger conditions that normally would occur during menopause, or unleash other potential genetic conditions. Such as hypothyroid, fibromyalgia, and other chronic disorders. Before starting Lupron it is extremely important to talk to post menopausal family members and discuss how menopause went for them. In my family there is a strong history of Hashimoto’s Thyroiditis onset during menopause. Certain family histories may contra-indicate going into early menopause. Make sure your doctor understands the risks, and that there is a plan in place.
Add-Back Therapy, Other Medications, and Treatment Planning
Add Back Progestins
While adding back Estrogen is obviously counter-indicative in treatment of Endometriosis with Lurpon, add back Progestin is fine. Studies have found that add back Progestin reduces osteoporosis risk, reduces hot flashes, and can also reduce mood swings. The add back progestin promoted by the makers of Lupron is Norethindrone Acetate. In the United States Norethindrone and Medroxyprogesterone are the only oral forms of Progestin that are prescribed without ethyl estrodiol. Another option is the Mirena IUD which contains Levonorgestrel.
If you have taken birth control before (and honestly if you haven’t tried BCPs why are you taking Lupron!) find out which progestin was in the pills you took, and which one you had the most success with in terms of side effects.
Anti-Depressants and Tranquilizers
Many women have found anti-depressant medications extremely beneficial when taking Lupron. The effects of Lupron can effect Serotonin in the brain. Both SSRIs, and SNRIs have been found to be effective. This can be extremely important in women with a history of depression (myself being one of them). Some popular anti-depressants as adjunct for Lupron are Lexapro (SSRI) and Cymbalta (SNRI).
Anxiety, anxiety attacks, and panic attacks are also sometimes side effects of Lupron. Benzodiazpines such as Ativan and Klonopin can be prescribed for breakthrough anxiety symptoms, though if anxiety is pervasive symptom adjusting the anti-depressant (or starting one) should be considered.
Your treatment plan should include add back and other medications to assist with side effects, a pain management plan for the first few weeks of Lupron therapy when estrogen is going to spike, as well as a plan for ongoing testing and monitoring of any conditions that could be triggered by Lupron. It should be clear when the doctor needs to be called, and which one! You should also know when there should definitely be an improvement of Endometriosis symptoms, in most cases symptom relief should be notable by the end of two months.
My Lupron Treatment Plan
- Start an anti-depressant, in my case we chose Lexapro. I’d taken Lexapro without side effects in the past, and I’m having a lot of nausea right now and have a history of bad nausea with anti-depressants. I started the anti-depressant the same day as my first injection.
- Treat pain with a combination of Hydrocodone and Tramadol for the first two weeks.
- Within the first month of treatment get the Mirena IUD inserted. I choose the Mirena since I have a lot of nasty side effects from Northindrone and several other forms of Progestin for me they often cause very bad acne when Northindrone and the other progestins I have tried are supposed to be the best for acne. I respond fantastic to Levonorgestrel, and it completely clears up my skin (though it’s supposed to be the worst for acne!).
- Monthly Thyroid function tests to see if I am developing Hashimoto’s Thyroiditis, or any other form of Hypothyroidism.
- If I still have significant pelvic pain and/or gastrointestinal issues after two months stop Lupron and get a referral for GI to rule out other sources of digestive issues and pain.
I think my doctor said it best he said towards the end of my appointment that the women who fare best on Lupron are educated on the drug, are realistic about it’s potential effects, and are taking it because it is their best option and really believe it. He agreed that it takes a certain amount of mental strength and preparedness to weather this form of treatment. Lupron should not be prescribed without good reason, and it should not be viewed as a cure for Endometriosis. The best Lupron can do is shrink implants and slow the disease down. The only way to effectively remove implants and adhesions is through laproscopic excision surgery.
Lupron is best for women where hysterectomy is beginning to be discussed as an option (as in my case), are not candidates for further surgery (recent surgery too recent, or too many surgeries causing adhesions), or women who have extensive endometriosis or endometriosis on fragile tissues (e.g, bowel and/or bladder) and shrinking lesions before surgery is ideal.
A lot of the consternation that surrounds Lupron comes from it being used in milder cases, and essentially the drug was overkill. Also, I think a lot of the fear of Lupron comes from the fact that when it is being used effectively it is essentially a woman’s last best hope. I know myself, and other women I’ve spoken to, have gone through a period of grieving when faced with the fact that our disease was in a place where this was the best and only option. It is scary place to be, and it is compounded with fear that surrounds the drugs side effects.
I hope this information may help someone who is in the process of deciding whether or not to start this drug.
References and Additional Information
- Lupron Official Site
- What Your Doctor Doesn’t Tell You About Lupron Depot
- Treatment Options for Endometriosis
- Lupron Facts and Side Effects
- TAP Pharmaceuticals Lawsuit
- Consensus statement for the management of chronic pelvic pain and endometriosis (PDF)
- Lupron Shots and Endometriosis (Video Blog)
- Tips for Dealing with Side Effects Associated with Drug Treatments
- GNrh Agonists Article from Endometriosis.org