Medically induced menopause for endometriosis treatment
My endometriosis symptoms returned over a year ago. After I was sure it was Endo and not just a stomach bug, I made an appointment with my ob/gyn to discuss new options. In 2016, the ob/gyn who did my endometriosis removal surgery had suggested a medication called lupron if the endometriosis returned. I mentioned this to my current ob/gyn, who said he felt I was too young for the medically induced menopause and suggested a high dose of continuous progesterone instead (a high dose mini pill). Being recently diagnosed with RA I didn’t have the energy to advocate for myself, and agreed to his treatment plan.
Months passed and my symptoms continued to worsen. Max and I started to discuss more aggressive treatment options and their implications.
I found a new OB/gyn who recommended a new medication called Orilissa, basically an oral version of Lupron. In the leaflet on the new med was a bold warning: “may cause suicidal ideation or attempted suicide.” In clinical trials 4 women attempted suicide on Orilissa, and one succeeded. When I expressed my concern about this to the doctor because of my mental history, she shrugged me off and said any treatment at this point would do the same thing. She may have been right, but I didn’t like how she responded to my concerns, so I found a new doctor for a second opinion.
The new OB/gyn was honest with me that she felt my history was beyond her scope, and suggested a referral to an endocrinologist from the University of Iowa who specializes in endometriosis and infertility. She expressed that the specialist would have a better idea of which surgical options would best fit me as a “complex patient.” She also told me that she would have me try Lupron over Orilissa since it’s an older and more studied medication, and that it was necessary to try that before a surgical treatment to determine how my body responded to menopause and if menopause helped my symptoms.
So the decision was made to begin Lupron while I waited for my appointment with the specialist.
I had no idea I was only just starting to wade through the obstacles of getting treatment.
But first, let me explain what Lupron does. Lupron is a chemotherapy drug, a leutinizing hormone releasing hormone agonist. It signals the pituitary gland to stop producing the leutinizing hormone, which is the hormone that signals estrogen production. Originally Lupron was created to treat cancers involving sex hormones such as prostate cancer, but was later found useful in treating endometriosis. It is also used in low doses for fertility treatment.
Endometriosis growth and shedding is caused by estrogen, so without estrogen any pain associated with the Endo will cease. It is the most effective non permanent treatment for endometriosis, but at a cost.
Having no estrogen in the body means inducing an abrupt reverseable menopause, complete with all symptoms associated with natural menopause. Many find these side effects to be unbearable. And some of the side effects are dangerous –such as increased risk of osteoporosis and Alzheimer’s. Because of this Lupron is meant only to be a temporary treatment. Many women, like me, take it only in preparation for surgical treatment.
Now, back to my doctors appointment. The ob/gyn (whom I felt much more comfortable with than the last one) warned me that it might taken a couple weeks for the insurance to approve the Lupron. She said she knew all the right things to put in the pre-authorization but it could still take time.
Well my insurance only took a week… To say no. That was an extremely difficult day. I felt utterly defeated. This was my only option left –necessary if I wanted to explore surgery. My doctor was flabbergasted as to why it was declined. So she called, and they told her it was because she asked for the 3 month injection, and of she put in an authorization for the one month it would definitely be approved.
Nope. Declined again.
I received many phone calls from the nurse over the next month and a half letting me know the status of my prescription. Lots of back and forth between doctor and insurance, asking the doctor to jump hoops. Essentially, my insurance really didn’t want to pay for this. It’s impossible to put in words the frustration and powerlessness of paying a steep premium for “good” health insurance only to find when it really matters just how low priority your best interest is to them.
Finally, I got the call that the Lupron had been approved. I cried with relief that day.
A few days later the insurance pharmacy called to schedule the shipment of the Lupron injection to my doctor’s office. And they told me my copay… once again I felt a twinge of betrayal from the system. Normally my insurance covers 80% of my medications, but I guess Lupron is an exception. Instead I was covering 80%. Even with an assistance card, my total copay for a one month was more than we ever expected. My pride took a hit when I knew I had to accept my parent’s offer to loan us money so we could pay for the injection. I am so grateful for their support.
When I finally went in to get my injection, I just kept thinking “that’s a lot of money being shot into my arm right now… This better be the miracle I’ve been waiting for.”
Here’s what I can expect on being on Lupron. For the first 1-2 weeks my estrogen levels will increase, then they will suddenly drop, starting full menopause basically overnight. I am continuing my progesterone which will help with some of the symptoms. My appointment with the specialist is a week and a half from when I got my injection, so my hope is that the menopause will have started by then and I will have something to report.
I have already written a post about my first day on Lupron and will publish it soon, so stay tuned.
If you haven’t yet, read my previous post on the emotional side of this decision.