Sunday, July 27, 2008

Loopy on Lupron (Part 4)

Lupron was always a drug I'd hoped and prayed to avoid on my Endo journey. I had heard/read enough bad things about it to scare me half to death and balk when my doctor mentioned it right after my Lap, seeing as my case was so much more severe than we had anticipated. I declined it and insisted on giving Femara(as a fertility drug) a shot. After 4 cycles and still not pregnant, the pain was starting to come back and then I got another humongous cyst that made my right leg go numb for a while. I realized that sadly enough my Lap had not bought me the 6-9 months we had been hoping for, and after much thought and prayer decided to turn to the "evil" that is Lupron. I appologized to my husband in advance and warned him that it might be a while before he got his loving wife back. I cried myself silly, took a deep breath and called my doctor to tell him what we had decided. He himself has gone through having his wife on Lupron and knew how hard this would be for us. He had me start taking the add-back (Aygestin) right away and on January 15th, 2008 I began my monthly Lupron Depot 3.75 mg shots.

The first month was a breeze. I was expecting the heavy bleeding that comes a few weeks into the treatment. You typically get an initial "estrogen flare-up" that makes your symptoms worse and can bring on heavy bleeding. I did not. I remember calling up my doctor after 3 weeks worried because I had not been bleeding... I thought my crazy body was malfunctioning even then. I was told to relax, I was just one of the "lucky ones" and indeed with time I slowly began to realize that I was. The hot-flashes and night sweats set in pretty quickly, within the first few weeks. Honestly it wasn't any worse than what I had experienced on Clomid, so I wasn't too troubled. My moods were a bit more volatile, but again... Clomid had done MUCH worse to me, and so I happily proceeded to shot #2. That's when things started getting a little bit harder and the insomnia set in.

Never in my life have I realized just how much sleep matters to a person. At first it started with a lot of tossing and turning throughout the night. I could fall asleep just fine but my problem was staying asleep. When I mentioned this, I was told to try Benadryl. It worked... somewhat. Again, I would fall asleep just fine and maybe it would buy me another hour of straight sleep but no more than that. By now I was onto shot #3. I was sleeping about 4-5 hours a night which was still doable, but it was starting to take its toll on me. Day after day, the exhaustion kept building and again I mentioned it to my doctor who told me to try Unisom instead. Again, this worked somewhat, but after a few weeks it made little difference. This is when the true hell began for me. I was working full time and getting up at 5am to teach an early morning scripture class for the youth at our church Monday - Friday. I would get home at about 6:30-7PM each day, eat dinner, plan my next day's class and then crash and fall asleep on the couch by about 8:30 each night. Ben would pretty much drag me up to bed where I would sleep until about 11 and then I'd be awake the rest of the night. Sometimes I would manage to half doze off, but I would never quite get to that "all the way asleep" state. Day after day I would drag myself out of bed at 5am and cry because I didn't think I could actually make it through my day. I started losing my memory... I would forget how I got to certain places, or what someone had just told me not more than 5 minutes before. I started making big mistakes at work and 1/2 the time I felt like I was going insane. One day I just had a complete meltdown. It was Sunday and I was trying to get up and get ready for church but I just couldn't. I lost it and just sobbed for hours. I was completely irrational and was convinced I was going to die if I didn't get more than 1-2 hours of sleep. My husband made me call my doctor right then and there and tell him what was going on. I must've sounded like a blubbering fool on the phone, but my doctor called me in some sleeping pills right away. I took a week break from my early morning teaching to help me catch up on my sleep and things quickly turned around. I could finally sleep again! Those little pills became my lifeline. I could NOT have made it through the rest of my shots without them.

Shots # 4 & 5 were pretty uneventful except for the fact that I started having constant spotting for those 2 months. It just came on with no explanation and just as unexpectedly stopped the very day I received my last shot! My mood was very much improved now that I was sleeping again. Those pills were a life-saver. The second 1/2 of my treatment pretty much flew by with no significant problems. I did, however, get a lot of migraines for the first 2 weeks after each shot. Each month they got a little bit worse but compared to the insomnia they were much more managable.

June 24th, 2008 I recieved my 6th and final Lupron shot. My doctor, nurse, and I were SO excited! I had survived! I'd been pain-free since my 3rd shot and so we all felt that I was in pretty good shape and decided against a second 6-month round. We planned to start me on the Femara the same day I *would* have had a 7th shot, 4 weeks later, to help my body start waking up so we could start trying to conceive as soon as possible. So here we are, on our way to trying to get pregnant again! I just took my last Femara pill last night and am due for an ultrasound this Friday to see if my ovaries are responding or if they are still slumbering away. I've started feeling some familar twinges (the kind I felt when I was on Femara before) and so my hopes are that something is happening in there.

All in all, despite the 3 months of no sleep and the migraines... I really do consider myself lucky in the sense that I survived Lupron. I am completely off my sleeping pills now and starting to get some decent rest all on my own. The first few days were rough, but its getting better. I am still pain free and am feeling pretty good all around! I do not know if this will help us conceive, and I certainly know not to expect the pain to be gone forever, but it has been a very nice break so far. I suppose only time will tell whether or not it was worth it to do the Lupron, but so far I'm happy with our decision to give it a shot. I know that Lupron is a highly disputed and controversial "treatment" and that it doesn't work for everyone. I recognize that many have been burned by it and regret dearly having tried it. For them I am very sorry and wish it had been different. I am in no way recommending Lupron, just sharing what it has done to and for me. Perhaps I will have luck with it and it will help me conceive like it did for my doctor's wife.... and perhaps not, but for now I'm glad I did it, but more glad that its finally over! It wasn't as awful as I'd heard it would be, but it was still hard enough.


My Endo Journey said...

First four shots were great for me, then the dizzies. I couldn't really function feeling woozy all day everyday. I think my body was just telling me enough was enough. I'm SO glad that it has worked for you so far. I hope it brings you the MUCH needed break from endo.

Good luck on the Femara! I'm quite intrigued this is used as a fertility drug. How often/long do you take it? Is it used in the same manner as Clomid? I'll say some prayers for you ard your hubby for some healthy eggs that will lead to a healthy, happy baby!!!

Alex said...

I'm glad you listened to your body, I think thats so important... doctors can say all they want, but YOU know your body best and when enough is enough.

Yup, Femara can be used just like Clomid. I take it cycle days 1-5, so just 5 days each month. I am already starting to feel the familiar twinges in my ovaries, so I hope it means they're doing something! It doesn't have nearly as many/sever side effects as Clomid and doesn't aggrevate your Endo as bad as Clomid. It also works in lower doses, many women that didn't respond well to Clomid find that Femara works wonders for them. I'm really excited, I hope to hear good news on Friday and I'll keep you guys posted!

Jeanne said...


You've been through so much. The info that you are sharing is so important because there are so many women out there going through similar experiences. When they read your story, it is bound to make them feel less alone.

I'm sorry to hear about your struggle with insomnia. I know from personal experience all about that!! Sleep deprivation is a really bad thing and can lead to the symptoms you described (memory problems, mood issues, etc.) I'm glad you got through it!

In addition to endo, I have fibromyalgia, sleep apnea, etc. I'm no stranger to insomnia. From what I have seen, people take sleep for granted until they experience insomnia themselves.

I have a friend who is thinking about starting Femara next month. I had never heard of it until your blog and then just a couple of days later she mentioned it. So I knew what she was talking about right away since I had just read about it on your blog! You are doing a great job with your blog. Getting info out to people about just how serious endometriosis is and the effects on daily quality of life are so important. You're doing a great job at giving people insight into how endo affects you personally.

Take care,


P.S. How did you get the Foundation for Your Life “daily quote” widget to work properly on your blog? When I installed it, the words were truncated. I've seen the words chopped off on the right side with this widget on other sites too. I'm just wondering how you installed it. Maybe it just depends on how the blog is set up, template-wise? Did you insert the code into html or take the option where they installed it into your blog for you? Just curious. I'd like to have the quote of the day on my blog... but not if it's chopped off.

Alex said...

Jeanne, the way to get the Daily quote (or any widget really) to fit in your sidebars is to change the size. In the HTML codes that you copy to embed you should find a width and height number. Its important to maintain the ratio so if its too big and looks truncated I try to shrink it by 1/4. Lets say the width is 400 then divide that by 4 = 100. Subtract 100 from 400 and you get a new height of 300. Same with the height. If you get a decimal in your # (most likely you will)then I usually just round up or down depending. Then play with the numbers a little bit (like add 5 to each number, or whatever needed) until you get the size you like. Hope that made sense!!! If not, send me the code and I'll play with it a bit to see if I can get it to a size you like!