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.

Sunday, July 20, 2008

Going Under (Part 3)

August 31st, 2007 was hands down one of the best, yet worst days of my life. It started very early since I had to be at the hospital at 6:15 to get prepped for my surgery at 8am. Really the preperation started the day before with the horrid bowel prep and Cytotec (meant to dialate my cervix overnight). Honestly, the Cytotec was worse than the bowel prep! My doctor had me take 2 Lortabs with it, but I still woke up at 3am thinking I was dying. "Cramps" is not even the right word to describe it... seeing as this is what they give women to help them dialate and go into active labor (prior to Pitocin) I guess you could call them "contractions", only there would be no baby at the end. Oh no... no baby, but still worlds of pain that the Lortab did absolutely NOTHING for.

Overnight bag in hand, clutching my favorite Harry Potter book, and my husband and mom (who had flown down for a week and 1/2 to help, bless her heart!) we arrived early and sat for a while until I was called. Ben was allowed to go back with me, thank goodness because I was a nervous wreck. I had been told that once my IV was started they would be able to give me something to help me relax, but when I asked the nurse about it, she informed me that this would not be possible. I FREAKED. My doctor came to see me, went over the surgery plan, and tried to cheer me up some. I don't know if he sensed that I was on the verge of hysterics and maybe went to talk to the anaesthesiologist, but within 5 minutes my "new best friend" was there, drugs in hand. I did end up breaking down and crying, but that didn't last long because the anaesthesiologist kindly sent me into la-la land quickly after placing the most wonderful anti-nausea patch behind my ear that I was allowed to keep on for 2 days! I remember watching them inject something into my IV and within seconds I felt like I was floating off my gurney! Ben kissed me goodbye and off I went. I am SO grateful for whatever it was they gave me because as they were wheeling me down the hall and all those lights were passing me by overhead, I remember thinking "I should be terrified right now... hmm, thats odd... oh well." :) In the operating room I was immediately surrounded by a gazillion smiling faces! Such friendly nurses, I thought. One asked me if I was cold (maybe I was shivering?) and before I could even answer, I could feel a bunch of warm blankets being put on me, even wrapped around my head! Oh it felt so good! That same nurse stroked my arm and told me she was going to give me some oxygen (yeah right) and that I should breathe in deeply. The mask was put over my face and I prepared for the sickly sweet smell of the anaesthesia I remember from my tonsilectomy as a child, only it never came. Maybe it really was just oxygen? Or maybe they've improved the scent of anaesthesia! Who knows... in any case, I don't think I took more than 2 breaths before I was g-o-n-e.

When I woke up I was cold... and in pain. Lots and lots of pain. Immediately a nurse rushed over and asked me if I was cold... yes! Was I in pain? YES! She quickly brought me more warm blankets and shot something into my IV. I went back to sleep. This happened quite a few times, until I started feeling a bit more lucid between catnaps. It was now close to 1PM and I wanted to see my husband. I was informed that I was in Phase 1 recovery and would be able to see him shortly when they transfered me to Phase 2. A good friend of the family (who worked at the hospital) came to see me and bring news. I had asked Ben to make sure he found out what stage Endo I had when my doctor finished up with me. It was the first question I needed answered. I knew he would have told her, so I asked. I knew it before she even spoke because of the look on her face. "Stage 4, honey. I'm sorry..." I cried... and cried... and cried. It made sense, really, but I had always held onto the hope that just maybe I would be one of those women that had a mild stage of the disease and just had a lot of pain. After all, the amount of pain and the gravity of the disease are not directley proportional. But no... that was not the case, and I would soon find out just how bad my Endo was.

My stay in the hospital was pretty nice. Odd, I know, but really I wish I could have stayed longer! Every 4 hours a nice nurse would come in and shoot me up with some more painkillers, which was great because at about 3 1/2 hours later I would be in considerable amounts of pain and by the 4th hour I was on the verge of tears. Getting in and out of bed to go to the bathroom was... well, terrible. I remember everyone telling me to "use my legs" but they felt like jello, how do you get around that? My belly was HUGE and bruised and I my 4 inscisions looked nasty. They were closed with surgical glue and not even bandaged, so there they were in all their bloody, nasty, scary glory! Peeing was near impossible for that first afternoon, I almost had to be cathetered again. Once I finally was able to *tinkle* I had to do it in a measuring cup sort of thing and it was BLUE from the dye used during the Lap. (I had an HSG done as well) I freaked out and Ben had to explain why that was happening. My doped up/paranoid mind was conjuring up thoughts of kidney failure or something along the lines of that! I had my appendix removed during the Lap and so I was on a liquid diet that day, which was fine by me because I was so not hungry. But the apple juice and jello were appreciated.

The next morning my doctor came to see me now that I was more lucid and able to retain information. He brought with him tons of pictures (that I was able to keep!) and also drew me a diagram of what he found inside me. First of all, my pelvis was pretty much frozen. Everything was glued together with adhesions. My uterus was glued to my bladder, my intestines, and peritoneal wall. My intestines were also glued to my peritoneal wall. My appendix was covered in Endo and curled up/glued to my right ovary and tube. Finally, an explanation for all those trips to the ER with "appendicitis" that never turned out to be anything real! My doctor took that little sucker right out, and for that I will be eternally grateful to him! My poor ovaries were covered in countless cysts and many endometriomas. He showed me pictures of my pock-marked ovaries after they'd all been drained and shelled out. I had had a fibroid removed off my uterus and had needed a D&C to clean out the inside of my uterus to stop all the bleeding. An HSG was performed to clear out my tubes. He said it was all a huge mess. It was horrifying yet SO vindicating at the same time. All these looooooong years of being told this was just all in my head, that I just had a "low pain tolerance" finally made sense. I wasn't crazy after all, and there WAS a cause for my pain, which was VERY MUCH REAL. Like I said, it was the best and worst day at the same time for that reason. I FINALLY had my diagnosis.

Later that day I was discharged and sent home to heal. I did not want to leave. I loved my bed that made it easier to get up and down. I loved that nurses were there with more pain meds and comforting smiles. As a parting token, I was given an abdominal binder which would become my new best friend for the weeks to follow. Every time I stood up, it felt like my internal organs were falling out. It was painful and pretty scary. I had a lot of mesh put in to hold everything in place once all the adhesions were cut, so I imagine thats where the "falling out" sensation stemmed from, since my organs were now free to move around like they should in a normal pelvis. This however, was not fun and hurt quite a bit, but the abdominal binder helped a great deal in that respect.

Recovery at home was long and hard. I was very frustrated because I had heard that this was the type of surgery that you could have on a Friday (which I did) and return to work on Monday. I did not. I could barely walk around for more than 5 minutes at a time that Monday. On Friday I made my first trip out of the house and it just about killed me. I felt so weak and the pain was still very much present. I was supposed to return to work the following Monday and I had no idea how I'd be able to. Returning to work also meant going off the Percocet which I could not imagine at that point. From the outside, all you could see were (4) inch long inscisions. Why was I having such a hard time? My mom and Ben kept reminding me that the real healing was taking place inside, where the damage couldn't be seen. I had to be patient with myself and be positive. Things would get better.

I did return to work the following week but only part-time the first week. I would come home and be so exhausetd I would crash on the couch and stay there until Ben came home from work. To be completely honest, it took about 6 weeks to get back to normal. I had some post-op complications including oral thrush, infections and a crazy allergic rash to the surgical glue used to close my inscisions. Definitely not a very fun recovery period, but things soon began to improve and I felt the old me resurfacing. By the old me I don't mean pre-op Alex... that pain-riddled, always exhauseted Alex was not me. I mean the Alex that existed before pain ruled my life. An Alex that had been burried for so long. The change was amazing. I had so much more energy! I no longer had to rely on painkillers to keep me going. I believed my surgery had been the miracle I'd been hoping for ... and for a while there it was, until the pain slowly started coming back. We were back to trying to conceive at this point and using Femara as the fertility drug of choice, since it is more Endo friendly than Clomid. However, my ovaries were not a fan... perhaps they were still healing and it was too soon to push them so far. Regardless, I only made it 4 months post-op before we were once again forced to switch modes. This time Lupron was the detour, a drug I'd been hoping to avoid.

An Uphill Battle (Part 2)

Before continuing with my story, I just wanted to say thank you to those that have come and visited my little blog on its very first day!It's amazing how less alone you feel when you realize how many others are out there going through the same crud. I'm am so sad that such a painful thread links us, but I'm glad that we can gain strength and comfort from one another's experiences and thoughts!

Ok, now onto the rest of my journey up until now. I think I'll divide it into seperate posts, just to keep things a bit more organized and not so lengthy. Today's post will be about our infertility struggle, by far the worst that Endo has done to far.

Growing up with these "womanly issues" I always suspected having children might not be the easiest thing ever for me. I had nothing to academically back this up of course, but in my mind that part of me just didn't "function right" for some reason and so natuarally I assumed this would come back to haunt me someday. Boy was I right, and sadly enough I had grossly underestimated just how difficult it would be...

I would later (after my Lap) find out that I also have Polycystic Ovarian Syndrome (PCOS) which unbeknown to me (at the time) is often found with Endo. My cycles were never what you would consider "normal" and after being on birth control pills for 8 years straight, I expected it to take a while for my body to get it all straightened out. Eight months into trying I still had no idea what my body was doing, so as per my doctor's advice, I started Clomid. I wish I had known at the time what horrid effects this drug would have on my Endo... perhaps, I would have decided against it, but I guess thats why the say hindsight is 20/20, huh? In the 8 months that we did Clomid (along with trigger shots and 2 IUI's) my Endo symptoms grew ten-fold. I developed some nasty cysts that we had to try birth control pills on to make them go away. That didn't work so well, but at least they weren't getting any bigger right? Ha! A few ruptured, and that was hands down some of the worst pain I've ever had. Then the non-stop bleeding began, for which I was placed back on birth control pills, only this time continuously. The bleeding continued... Provera was added to the mix... still I kept bleeding. The last thing my doctor could/would try would be Aygestin, and if the bleeding continued I would have to have surgery... both to stop the bleeding and get rid of the cysts that would just not go away on their own.

Of course the bleeding continued, the pain was at an all time high and I was popping Naproxen and Lortab like candy just to be able to function. I had been asked to keep a daily journal of my pain level, and those last 2 months, there was not a day that went by in which I wasn't hurting somewhere, ususally at a moderate to severe on the pain scale. It was awful... I wasn't sure how I was going to keep going like this. The pain drained me of any and all energy. I was worse than useless! After work I would come home and just crash on the couch. On the weekends I would take my strongest painkillers (because it was the only time I could since I didn't have to go to work) and pretty much just sleep the days away. I neglected my house, my husband, and any other resposibilities I had at the time. It had been almost 2 years since we first started trying to get pregnant, and there I was, still no baby, in worlds of pain, and bleeding to death. Could things possibly get any worse?

Oh yes... they always can. I've learned not to ask that question anymore. On August 31st, 2007 I went in for my Laparoscopy. (I will blog more in detail about that next time) When I woke up I heard the news I was dreading. Yes, I indeed have Endometriosis and a rather severe case of it too. I also found out I had PCOS which at that time meant very little to me, but would soon mean more pills to take, including the not-so-fun Metformin. Eventually all this would also mean a 6 month course of Lupron, which I am just barely resurfacing from. More on Lupron later on as well. So, here I am almost 3 years since we started down this road of trying to conceive, and still no baby. Will we ever get our little miracle? Who knows... but for now we keep chugging along, and in 2 days I will start another treatment, Femara.

Saturday, July 19, 2008

How It All Started (Part 1)

My journey with Endometriosis began long before I ever knew what it was. Technically it began before I even got my first period, although I had no idea what was happening at the time. I was a young pre-teen who was just always in a lot of pain and frequently took trips to the ER because of appendicitis scares that never turned out to be anything but just that... a "scare."

My mother would often tell me about how much pain she endured every month, especially when young... as did her mom, and probably her mom's mom too. It "ran in the family" and so was surely nothing to worry about. After all, isn't pain just a "normal" part of every woman's life once they start menstruating? This rationale, along with my pediatrician's assurance that I was perfectly fine, lulled me (as well as my parents) into acceptance. The pain just became a part of my life, of who I was, and we just dealt with it as best we could. As I grew older, the pain grew worse. Eventually it became bad enough that I would miss school on occasion because of it. My legs would go numb from the pain, and my mother would sit with me and rub them for hours.

By the time I was 16 it was bad enough that my mom took me kicking and screaming to my first OB/GYN. After taking my history and asking a few questions (not even as much as an exam was done!) the doctor quickly wrote me an Rx for birth control pills and told me that this would fix everything. These problems were "common" in teens and that eventually my body would adjust, but that probably I just had a "low pain tolerance" and would need to be on the pill forever to keep me content. I took the pills and hoped for the best. After all, she was a doctor... she MUST know what she's doing.. .right?

Fast forward a few years. Now a college student, I was off on my own trying to cope as best I could without the aid of my mom during those rough days each month. The pills didn't seem to be doing much for me anymore, the pain was getting worse. I went to new doctors... they all said the same thing. "Oh you just have a low pain tolerance, maybe we'll try a higher dose... and here, why don't you just take these pain killers!" More pills to pop, great. So the hormones got stronger and my tolerance began to wane. Not only was I still in pain but now I constantly felt sick to my stomach, my moods were all over the place, and each month certainly did not get any easier. Finally, when I was about 22 I found a doctor (while I was living in California for a short while) who mentioned Endometriosis to me. I had never heard of it, but everything she described was dead on to what I had been struggling with for years. I took that information and ran with it, doing as much research as I could.

I moved back home again shortly thereafter and went to a new doctor. I mentioned my previous doctor's tentative diagnosis and this new doctor all but laughed in my face. She said I was "too young" to have something that serious. "This is a disease of the 30-40 somethings, there is no way you could have that" she kept saying. Upon my insitance, she reluctantly agreed to give me a referral to have an ultrasound done to check things out. Nevermind that Endo cannot be diagnosed that way, but what did I know? (And apparently she didn't know very much either!) Of course the ultrasound showed nothing amis, and triumphantly she talked us out of having the Laparoscopic surgery that would be the only way to really know for sure.

Not much later I got married and moved again. Once again, I went to new doctors, all of which told me the same things and stuck me on yet higher dosages of birth control pills. This went on for years until I finally found the one doctor who listened to me. At the age of 26, I was FINALLY diagnosed with Endometriosis, after a Lap. I sadly fall into the all too common group of women that on average go 10 years or more undiagnosed due to the ignorance and unwillingness of doctors to listen and take their patients seriously. Most unfortunate still is the fact that pain was not the only battle-wound left behind from my untreated Endo... we would soon find out that it was the cause of something far worse than any physical pain... infertility.