Lupron tried to kill me.....literally!

In December of 2016 I began having serious pains in my side.  I called my PCP who told me to go to the ER.  A family friend brought their kids to our house to watch Savannah and Kennedy while he took me to the ER.  Jonathon was out of town, but was heading to Evansville.  At the ER it was discovered that I had a cyst on my right ovary.  The ER Doctor told me to follow up with my OB-GYN within the next two weeks.  Unfortunately, the next two weeks consisted of Christmas and New Year’s Eve celebrations.  January 11^th, I was able to follow-up with my OB-GYN.  Another ultrasound confirmed the cyst was still there.  Something I already knew because I was still having pain from time to time.  The OB said since the cyst hadn’t resolved itself she would like to remove it surgically.  January 18^th I had surgery to remove the cyst.  Before the surgery I had asked the OB to also remove my mirena IUD and tie my tubes.  After the surgery we learned that the source of my pain had not been the cyst, but scar tissue adhesions had become attached from my uterus to my upper abdominal wall.  The cyst which was said to be around the size of a golf ball based on imaging was really only the size of a pea.  My OB also noticed I had a very mild case of endometriosis.  She thought the hormones from the mirena had kept it from spreading. 

The first week after surgery was brutal.  I could barely move, but I tried to do some things because I have a hard time letting people help me out.  My Mother-In-Law graciously came to stay for two weeks to help get the girls to school and help around the house.  Our church was also very gracious and provided meals for us during the two-week span as well.  At my post-op follow up I told the Nurse Practitioner that I was still experiencing pain.  She said it was to be expected because “there was a lot going on in there” when I had surgery.  I waited it out, taking a heating pad to work.  I took 800MG Ibuprofen around the clock to relieve the pain, substituting the oxycodone at night.  

Eventually I got to where I could function, but I was still having pain.  It wasn’t nearly as bad as it had been before the surgery, but it was definitely noticeable.  Towards the end of February I called my OB to express my concerns with the pain I was still having.  A week or so after phoning her I began to get calls from our prescription insurance asking for authorization to send an injection to my OB’s office.  The insurance company wanted to check with me before sending it because of the high copay.  I called the OB’s office and was informed by a nurse that the OB thought it was probably the endometriosis causing my pain and she had prescribed Lupron injections.  The nurse explained that these injections would basically send my body into menopause in an attempt to stop the endometriosis from spreading.  In addition to the injection, I’d also be taking an oral medication (add-back therapy) to offset the side effects associated with the hormones.  The Lupron injections come in 2 forms.  A woman can either have an injection every month or every 3 months.  My OB prescribed the quarterly injection.  I asked the nurse if there were any other options.  Having had a horrible experience with a normal dose birth control in college, I knew my body was very sensitive to hormones.  She explained that I had two options, the Lupron injections or a hysterectomy.  I could hardly believe that my insurance would pay for a hysterectomy after having only been diagnosed with endometriosis a little over a month prior, however the nurse assured me my medical records were enough to prove that I needed the surgery, should I elect to have it.  I told the nurse I’d talk to my husband and let her know how we’d proceed.  She also informed me that if we went with the injections she had a medical savings card which would bring down the copay for the shot considerably.

After talking with Jonathon, he was nervous about me going back in for surgery so soon after the previous surgery.  I also reached out to a couple friends whom I know who have endometriosis and asked if they'd had any experience with the injections.  Both had, but one couldn't remember anything about them since it'd been so long since she was on them; and the other friend had a decent experience with them, but she was on the monthly injections, not the quarterly ones.  I explained my concerns with the hormones, but Jonathon thought it would be best to at least try the injections.  I agreed to try them, hoping to at least bide some time before I needed to face the ultimate fate of a hysterectomy.

In the middle of March, I had my first injection.  Within a few days, my mood changed considerably.   I began to lose motivation to do anything.  I functioned to the limit that was expected of me.  Co-workers would ask me what was wrong and I couldn’t tell them.  I’d be on the verge of tears and not have a clue why I was about to cry.  I began thinking that everyone I was around secretly hated me and was only nice to me because they had to be around me for one reason or another.  I started to think that I had no real purpose to my life.  At times I would even contemplate ending my life.  The week of spring break things really took a turn for the worst.  I noticed I’d began developing some of same symptoms I’d had when I was diagnosed with post-partum depression after I had Kennedy.  Concerned I called my OB and asked if they’d be able to put me back on Zoloft.  My OB was out of town, but her associate was concerned so she had me come in for an evaluation.  At the end of our visit she agreed to send in a prescription for Zoloft.  She also was concerned about my mental state and wanted me to follow up with a Nurse Practitioner on the same floor who could evaluate me and recommend a therapist.  Before I left she told me that these problems were because the add-back therapy hadn’t built up in my system.  Once it had, a lot of these issues would subside.  She gave me to referrals before I left.

After the first referral deemed impossible to follow, I called the second referral and was able to be seen. The Nurse Practitioner said that I needed to see a therapist and thought she had someone in mind.  The specific person in mind also saw children, so it would leave a door open if Savannah or Kennedy ever needed to seek counseling.  Concerned with my anxiety and lack of motivation to function from day to day, she called in a prescription for Wellbutrin. I’d also began to dig more into the Bible and even began to listen to K-Love.  There were a lot of songs that came on that either gave me hope or described exactly how I was feeling.  Between the medications and my faith through music and scripture really helped bring me out of the darkness.

Towards the end of May I began having pain in my pelvic area again.  I had my annual visit with my OB so I asked her if it was common to experience pain right before another injection was due.  She said that was probably the cause of my pain and it should subside after getting my next injection. To get me through until the next injection, she wrote me a prescription for more 800MG Ibuprofen.

The beginning of June we went to Colorado for a family vacation.  I was still in quite a bit of pain, but I just worked through it to have a good time with my family.  The week after we came home I had my second injection.  I asked the nurses if I’d have the same side effects as I’d had with the first, even though the Zoloft, Wellbutrin, and add-back therapy had now built up in my system.  They told me that I would indeed have the same symptoms come back.  They also said this would be my last injection, as women are not supposed to have them more than 6 months at a time.  Concerned about this, I asked the nurse who had been working with me to get the injections ordered.  She said the other nurses were correct, but she was willing to ask the OB if she’d be open to a third injection.

Bracing myself for the emotional and mental instability to come back, I kept telling myself that I’d been through it before but this time I knew what it was and what was causing it.  However, the physical pain never subsided.  It was actually getting worse.  I thought I rode the wave through the first few weeks of the emotions pretty well.  Although I had upcoming VBS to focus on.  However, even the week before VBS and even during VBS week I was coming home in so much pain that I was going back to the oxycodone left over from my surgery in January and taking it with the ibuprofen (this was a trick told to me by a nurse after my C-Section) because the ibuprofen alone was no longer helping the pain.

The week after VBS our family went on vacation with Jonathon’s family.  It’s a tradition we’ve done almost every summer.  I was still dealing with a lot of physical pain.  It was not helping my mental state at all.  Almost every day I having to take an oxycodone and ibuprofen to manage the pain.  However, I began noticing during that week that this was beginning to do nothing but take the edge off of the pain.  Every day at some point during the day I would find myself curled up in a ball on our bed crying.  At one point we realized Kennedy doesn’t have feeling in parts of her feet.  This may seem trivial to some, but to me it was devastating.  I know it’s not a true set back by any means, but to me it was one more thing to grieve for her.  There were also things that triggered insecurities which became amplified and manifested in my mind.  I began feeling like I was a worthless, horrible parent, who wasn’t doing the best by my kids.  I felt like I wasn’t good enough for my husband.  I began feeling like I needed to remove myself from the situation to give someone else a chance to be better for my kids and husband than I was.

On Wednesday night of that week, we headed to Nashville so Jonathon could join some friends for a trip down to the Gulf Shores.  On the way to Nashville things kept playing over in my head, my emotions got out of control, and I felt hopeless.  I remember at one point when coming into Nashville, I began running my thumbnail on my left hand up and down my right wrist, trying to break the skin.  I couldn’t tell my husband because he deserved this trip.  His job had been so stressful for so long, I knew he needed time away from everything and everyone to just decompress. 

Through the course of that weekend my depression only went into a deeper, darker state. I'd started googling the medications I was on and how much it would take for each of those to end my life.  Fortunately, (I thought unfortunately at the time) none of the medication I was on would produce a fatal reaction if overdosed.   I began physically doing things to myself that I'd never done before.  I tried keeping all of this from my kids, but they eventually started seeing the marks.  I was trying to figure out a way of having someone find them so they wouldn't be in the house by themselves for the weekend, when I finally died.  

Eventually, by the grace of God, I had reached out to someone who was genuinely concerned about my mental state.  She began reaching out to other people and eventually I was able to get some help locally from friends.  These friends single saved my life that weekend, and ultimately prevented the lives of my children and husband from ultimately being shattered.  My Husband, who learned of this situation while he was on his trip, was overwhelmed by what I'd kept from him and his inability to do anything about it.

I went to pick him up from his trip, and we had a long talk on the way home.  He didn't realize exactly what the injections were and had remembered the issue with the birth control from college.  He flat out said there would be no more injections.

The next Monday, I called my OB and the Nurse Practitioner.  My OB's office doubled my dosage of Zoloft.  My Nurse Practitioner was on vacation, but alarmed by the situation from the weekend, her staff relayed what was going on and she called me from vacation.  She was worried that the physical pain was partially to blame for my mental state.  She had her office prescribe me Xanax to see if it would help my body relax, and ultimately put an end to some of the pain.  

In the weeks since this dark time, I have still battled with my depression and the physical pain.  Some days are better than others.  I truly don't think the endometriosis is causing the pain.  I've done a lot of research about my pain and it's not common with endometriosis.  On the endometriosis website it says that endometriosis basically creates the perfect breeding ground for adhesions.  Even though I have no medical proof, I'm fairly certain my adhesions have come back with a vengeance.  Finding this information really gave me relief.  I know many people who have battled endometriosis a lot longer than I have, yet they were able to manage it for a lot longer than 6 months.  I felt like I was crazy because I was in so much pain, but reluctant to think the endometriosis was the cause, due to the short amount of time I'd been diagnosed.

Thankfully, I'll be having my partial hysterectomy in the middle of August.  I'm hopeful that this will not only end the physical pain, but also put an end to some of the mental anguish I've been battling.  Thankfully I have some wonderful doctors who will be helping me through all of this.

I want to finish this post to say, I hope this can help someone somewhere know the true dangers of Lupron.  A friend who helped me out that crazy weekend told me later that she'd researched Lupron and asked one of her friends about it.  She said she found nothing good about it in her research and her friend didn't have a positive experience with it either.  I have to believe something good will come out of my experience, even if it's only to warn other women of the potential risks of Lupron injections.