Halfway done..

Last time I updated in January I was thinking what I was going through was a side effect to lupron but I also thought maybe because I was so late on my shot it was making me sick. Usually they put you on medication to come out of the medically induced menopause but since I wasn't suppose to come out of it I wasn't on anything. So the week after I was suppose to get it I got so sick. My heart was racing, I was throwing up, I was so dizzy and just felt horrible. It lasted for 2 weeks. I finally was able to get my shot at the hospital the end of January instead of early middle of January. My hot flashes had left (side effect of the lupron) before the shot and after I started a horrible period that week which meant the endometriosis was growing back like wildfire. The shot finally started working again a couple weeks later. I have bad hot flashes again. The body pain continued to get worse over the past couple months and it is horrible. I'm really really struggling with it. My doctor wants me to just wait it out and said it should get better the more shots I get but so far it's only gotten worse. So frusterating. It is worst than the endo pain was! Well the good news is I got my 3rd shot this week which means only 3 shots left (hopefully)! That's all I have for now... I will try to update more often. 

Take the bad with the good

I'm slacking on this already! I got my first shot over a month ago. It took longer than it should to show signs it was working. After bleeding very heavy for a couple weeks after the shot and the pain getting worst than it had ever been, the doctor called in Toradol with needles and as well as an antibiotic because of a infected belly button incision he had to drain with a needle. Cody was giving me a shot every 8 hours to hopefully stop the bleeding. It actually worked! Christmas Eve I stopped! The cramps and back pain took awhile but eventually did too! I got hot flashes and they weren't that bad. I had switched to a quick release and long lasting pain med that didn't make me all sick and drugged feelig. I was feeling pretty good. The doctor told me he would prescribe me something for hot flashes but I wasn't interested on taking a prescription just because I get hot. Then my hot flashes got worse and worse. Now if I'm not sweating from a hot flash I have chills. I don't know what normal temp is anymore and can't wait to have that back after I'm done with these shots. I also noticed that my body was hurting really bad. Not just my joints but my muscles too! My headaches are really bad again too. The worse the hot flashes got the worse the pain got. So frusterating. I also have been getting very dizzy and weak. These past few days I feel like I'm going to pass out every time I stand up. My stomach hurts and I was throwing up. I went to my family doctor who thought i might have fibromyalgia, and that my chiari malformation could be causing the dizziness, throwing up, heart racing, etc. But then I talked to my Ob-gyn nurse and she said the pain is a side effect and of course the hot flashes are. She is going to talk to the doctor and see if the other symptoms could be side effects as well and said I should be hearing back from her tomorrow afternoon. I hope they can do something for the pain mostly. It's really making it hard for me to do much. 

Also my husbands work changed insurance the beginning of this year. It took weeks for our old insurance to process paperwork to pay for my shots which are 1,000 each. Of course we had notice they were changing but couldn't get our hands on any information for awhile. I was suppose to get my shot last week but we got them the info the week before. So today when I talked to my nurse I made sure to ask about the progress on the paperwork for the shot. 

Bad news... The company I got my first shot from and our new insurance don't work together.

Good news... The insurance is going to try and find a company that they do work with that has the lupron shot. 

Cross your fingers that it's soon so we don't have to delay it any longer! Sometimes I wish I would've refused this shot and gone natural as I did the last time I had a major health issue but after praying and praying I felt I needed to do the lupron shot and as long as I continue to be prayerful and live the commandments I know I will be okay. 

I hope everyone had amazing holidays with their family and friends filled with love and laughter! Mine was everything I wanted and more with my husband, and both sides of our family. No matter what trials come my way I will always know one thing for sure... I am SO very blessed and life is good. There is a reason for trials and I know that I will continue to learn and grow from this one and as hard as it is and has been I'm grateful for it. 

Christmas 2013

New Year's Day 2014

Phone call

I have such an awesome doctor. He called to check on me today before I could call him and tell him I wasn't doing better like he asked me too. I have really struggled this week with pain and very heavy bleeding as well as feeling extremely fatigued, light headed, and sick. I have been sleeping a TON! So weird for me. Wednesday when I called the doctor he made sure I was taking 600mg IBprofeun (sp?) to slow the bleeding, along with my 15mg oxycodone which I have. He also told me to drink a ton of electrolytes so I started doing that. When he called to check on me today he said he was positive if he stuck a laparoscope in my belly again he would find internal bleeding all over my abdomen again. I forgot to ask what we were going to do about that but that'll have to wait until I talk to him next. He also told me to continue what I am doing. He said we have got to slow this bleeding down while waiting for the shot. They are also going as fast as they can to get the shot because I really need it as things are backtracking inside of me. I was really hoping to get it this week but hopefully next week for sure. Lately I have been leaning on my husband more then usual as I struggle with pain and being sick. He always knows what to say or do. One of the many things he has been telling me is, "you can do hard things!" It always brings me back to one of my favorite talks that was by Sister Dalton. She says in her talk, "....I had a small plate inscribed with a motto that read, I can do hard things. That little plate bearing that simple motto gave me courage. But now if I could change that motto, it would read: In the strength of The Lord, I can do all things." How true is that. I am so thankful for the Gospel and the opportunity I have as I go through this test to learn and grow. "I can do all things through Christ which strengtheneth me." -Philippians 4:13

The little things...

I forgot to add this but it's something I want to keep forever. After surgery they brought me back to my room. I saw my dad, my husband, and when I got into the room and they had the bed into place my sweet 7 year old niece came to the side of the bed and said, "Hi Aunt Sara!!!" It filled my heart with joy to hear that sweet little voice. She held my hand and just stood up by the bed watching the cartoons while standing and holding my hand. I don't remember her leaving but I was grateful to have her to cheer me up. Then the day after surgery my sister and mom came along with my youngest niece. I wanted to hold her right next to me so my sister brought her by me. She smiled and snuggled with me. I love being an aunt. My nieces and nephews brighten my day when I see them. Here are some pictures of me with my niece. (Remember I just had surgery and wasn't feeling my greatest so I don't look my best although my husband still called me cute and beautiful and I was horribly bloated.) 

Oh, the little things that make life wonderful. 

From nothing to more then I thought.

Tuesday, November 12th I had my appointment with my OB-GYN. My bleeding had slowed down a lot but my pain was still pretty bad. He had delievered me and some of my siblings so I knew him a little. I told him all that was going on and he told me he was going to look at his as what what he do if I was his daughter. He said he felt I needed surgery and because I was going on a trip for thanksgiving he scheduled it for a couple days after I got home, December 3rd. He also does an exam that not a lot of OB-GYN's do where he can feel the endometriosis before he does surgery which he did that day as well. I felt pretty good after being there a couple hours and having all my questions answered and went home to talk to my husband about it. He also felt good about the surgery so we decided to go with it. The next day, Wednesday, I was feeling worse. The bleeding had picked up so much worse and the pain was horrible. I went to work and after finishing only half of my work I called my husband just in tears. I was in so much pain and couldn't finish. My friend that works there said she would finish for me so I went and laid down in my tahoe in tears until my husband got there. He took me home and I went to bed. Thursday I called my OB-GYN telling him that it had gotten so much worse and he told me to fast after midnight and call the next day if it hadn't settled down and he would do emergency surgery. He also told me to go to the ER and get some IV pain medication to see if I could get on top of my pain and avoid the surgery and hopefully the bleeding would slow again as well. The IV pain meds only helped for maybe a half hour then I was in horrible pain again. They told me to go home and take my oral pain medicine and hopefully together it would calm down. It took of the edge some and I was finally able to get a little more sleep. Friday came and it still hadn't calmed down. I waiting until the late morning and called the OB-GYN office. The doctor had told me he had a major surgery so I knew he wouldn't be in until later so I talked to the nurse and she called his cell phone or paged him. He wanted me to go get another ultrasound even though I had just had that one a couple weeks ago and then go into his office. They didn't see anything on the ultrasound which he expected it might not show because sometimes it doesn't show endometriosis. He also didn't see polycystic ovaries which was good news but didn't mean I didn't have it. He told me he was going to do the surgery the next day, Saturday, after 2 other emergency surgeries he had. They called the hospital and made the appointment for 10 in the morning. I went home and ate lotsa food since I had been fasting all day and knew I had to the next day too. The next morning we arrived at the hospital at the same time my mom and my sister from out of town got there. I knew my mom was coming but not my sister so it was a good surprise! They definatly kept my mind off of surgery by keeping me laughing. After being poked a few times the nurse finally got an IV in. My veins have always been a pain to poke and it was worse that I was fasting. The pain started to get pretty bad because I wasn't able to take any pain medication because I was fasting so the nurse called the doctor and he ordered IV pain medication. After a few hours the anesthisologist came in, then the doctor, and finally they rolled me in my bed to surgery. They talked to me for a bit while getting all set up then giving me the medicine and finally I was asleep. I had just barely woke up in recovery when the doctor said something about there being internal bleeding and endometriosis and I couldnt really understand what he was saying. I was wheeled back to my room where my husband told me what the doctor had told him. I had moderate endometriosis and it was too bad to laser it all out. He had gotten some out but some was too deep like the roots so it could damage my organs if he would've tried to laser it all out. I also had a lot of internal bleeding all over my abdomen from my heavy periods overloading my tubes and it coming out into my stomach. He said it was irratating my intestines and organs causing extra pain. Then what surprised me was I had severe polycystic ovaries. Normally ovaries are bumpy but mine had stretched out over double its size and had no bumps and looked very irratated and I have nevere ovulated. The doctor said he was going to talk to specialist in Utah to get his opinoin on what we should do. My doctor knew what to do to get rid of the endometriosis but wanted to talked to him about my ovaries. The waiting game once again. I was pretty bummed out because I was hoping for just mild endometrisosis so that after surgery treatment would be a lot easier. At the same time I was so thankful it wasn't severe endometriosis and I didn't have to have a hysterectomy. I couldn't believe the hospital a few hours away that is suppose to be such a good hospital was going to do a hysterectomy on me at age 16. That's just crazy from what I know now. Anyway, I was suppose to go home that night but as my husband was helping me from the bathroom back to bed my side pain hit worse then ever and I started to drop to the floor it was so horrible. I was in tears and my husband helped me sit back down. The tech came in and after a minute I was able to make it back into bed with their help. Of course they did blood work and my liver numbers were up again. My OB-GYN called my family doctor and they both were coming in trying to get my pain under control but still no answer on the liver numbers or why I was having pain in my liver area. I ended up staying until Tuesday when we finally got the pain under control with oral pain medication. The OB-GYN called the next day to check on me and told me he had talked to the specialist. They both felt I needed to start lupron shots to get rid of the endometrisos as well as shrink down my ovaries. He told they they both would do paperwork and write the insurance to make sure they helped with the cost of the shots. What the lupron shots do is put my into menopause. I will get it every month for 6 months and then after I will go outta menopause and start fertility pills. Gotta love the waiting game. :) The next week was thanksgiving and I was determined to go on our trip even though it was driving for a couple days and overnight through a few states and a few days there then driving for a couple days and overnight again. Friday (almost a week after surgery) I had an appointment with my family doctor who cleared me to go medically but told me I would be miserable in that much pain. I decided to play it by ear and decided to for sure go Sunday since we were leaving Monday. I actually felt a lot better Monday and felt better about going as well. I had a blast. Thursday which was Thanksgiving the pain seemed a lot worse again. I couldn't figure it out and was really struggling. Friday was bad too and that night I noticed I started my period already! No wonder the pain was so bad. The doctor had said pain from all the problems inside me is worse when I am on my period. He also said my endometriosis grows when I am on my period. I was glad I had an appointment Monday, the day after getting home. The drive home was hard and I was so fatigued. I slept a lot when we got home and my husband got work off a little early to take me to the OB-GYN appointment. My incision healed good which they haven't hurt much. They had a paper to fax in left now I am just waiting for the call to get the lupron shot. I am bleeding heavier every day and the pain is continuing to get worse. He also told me on Monday I needed to get an insulin resistance test which he told me I needed someone there to drive me home since it will make me sicker then most people. I went and got that done yesterday. You fast and then get your blood drawn as soon as you get there and then you drink nasty stuff when that test comes back and wait a half hour and get it drawn again then you get it drawn every half hour for another couple hours. I thought I was lucky when I left the hospital and wasn't really sick at all. My husband took me to get food and I went to work. Not long after being at work I started shaking SO bad, my skin was on fire and red, and I was SO sick and SO lightheaded. It was horrible but calmed down after a bit and after I finished my husband followed me home. The doctor told me depending on what the test says I may need to go to Utah to the specialist and start on another medication along with the lupron shots. I will also call the doctor when I get any side effects from the lupron like hot flashes, depression, etc. and he will prescribe me something for any of the side effects. Then we will play the waiting game of how the shots doing and if anything doesn't go as planned he will send me to the specialist. I really hope the shot works and I dont need to add any other medications and that I am able to come of the shot easy and start my fertility pills. The endometriosis could be gone forever after this or after my pregnancy it could come back once I have periods again. Then I will have to keep having surgery to laser it out every time it comes back if it does. Hopefully it goes away and stays away! I will blog as I start my shot and go through treatment unless my blood work for the insulin test comes back first and I know if we ahve to do something about that. Oh! I forgot to add this earlier. The reason I brought up the side pain is because my family doctor brought up I could have cysts all over my liver or as rare is it is, it is possible there is endometrisosis up there. I guess some people get it up close to their nose and their nose bleeds a lot. Pretty interesting. It will be interesting to see if this treatment takes away the side pain. Then we will know what the mysterious side pain and liver numbers means.

Did you say surgery?

The end of September I noticed my low back was hurting really bad. I have never had pain like that in my low back but figured I must have hurt it somehow. Then a few days later I started my period. (I had always been heavy and abnormal on timing but for over a year I have been getting it every 4-6 months and it would be so heavy and last for two weeks to a month.) We were going camping the day after I started. I noticed the first day of camping it was a little heavier then usual but didn't really think much of it. The second day it was even heavier. My cramps were SO painful as well as my low back and stomach pain. The day after going home it had gotten so bad I started to become a little worried. I started hemorrhaging and would have to wake up in the middle of the night to shower and change because it had gotten so bad. I was very light headed and the pain was unbearable. I would wake up and have to stay in bed all day until I would go to work for a couple hours then I would come home and go back to bed. After almost a week and a nurse friend and a family member becoming a nurse telling me to go in, I finally called my doctors office. He wasn't in both days I called so I finally called an OB-GYN office and the soonest one that could get me in was with a nurse practitioner the next week. I had never been to an OB-GYN so I didn't really know what to expect. When I went to the doctors office on Monday it had been 10 days since I started and The nurse practitioner was very nice. She told me I was probably just having a heavy period. She said my periods were confusing my body and that I needed to start on medication to get them back to normal because when a period is that abnormal I am more at risk for cancer. She told me to call if the pill started my period a month after the last and she would refill it. If it wasn't working I would go back in and look at other options to get it more normal. I felt really dumb of going into the doctor for just a heavy period and I couldn't believe that what I had just gone through was just a heavy period. I started the hormone medication before I had stopped bleeding like the nurse practitioner had told me and spotted for a few weeks until it was out. I started bleeding the day after stopping it but it was pretty like for about 4 days. Then early one morning I woke up and had hemorrhaged and the pain was worse then it had ever been. I was doubled over in pain all day. I was on 10mg of hydrocodone for my migraines as well as IB profeun in between which didn't seem to even touch the pain. After hours and the pain getting worse I finally called the nurse practitioner at the OB-GYN office. I told her what was going on and the medication I was on and she didn't seem too concerned and didn't seem to understand that I had been on that pain medication for almost a week no matter how many times I said it and kept telling me to start it that day. I was so frustrated when I hung up I couldn't believe I was being such a wimp about a heavy period again! After my sister threatening to call the nurse practitioner if I didn't I decided to call my family doctor just to see what he had to say about it. If he said it was a heavy period then I would just give up on having a feeling it was more then a heavy period. I was able to talk to the nurse and she was shocked the the nurse practitioner said it was just a heavy period and wouldn't listen to me about the pain medication I was on. She told me to call back and get it through her head that I was on a lot of pain medication and how much pain I was in. I told her I didn't really want to talk to her again but just wanted to know if I needed to come into my doctor. She felt I needed to be seen right then and then handed me off to the doctor who agreed. He told me to go right in. After visiting with me for a minute my doctor sent me to ultrasound. They found excessive fluid that shouldn't have been there and my doctor told me I had a cyst rupture. He prescribed me 15 mg of oxycodone and told me to make an appointment with an actual OB-GYN and not to go back to that nurse practitioner. He brought up endometriosis and told me if the pain wasn't gone in a few days there was more then a ruptured cyst going on. I left and called the OB-GYN office and they told me the next appointment was weeks out. They asked what I needed to be seen for and I told them I had just been to the doctor and was told I had a ruptured cyst and he brought up endometriosis. She then was able to get me in sooner which was over a week away. I went home and stayed in bed all weekend. After a few days my doctor called to see how I was doing and I told him I was in horrible pain still and still bleeding pretty heavy. He said most likely the OB-GYN will do surgery because that was the only way to really diagnose endometriosis. The waiting game began to find out if I had to have surgery or not. I just had to make it to my appointment.

Hysterectomy at 16? No thank you.

I decided to start a blog as awareness and as a journal. I hope in this process I will help someone because I wish I would have known back when I was 16 years old. If you have any suggestions of more I should add or take away please feel free to comment and let me know! Thank you! Starting at age 3 I grew up very sick. I continued to gain more symptoms every year. After a couple surgeries, tons of antibiotics, tons of ER and doctor visits I was admitted into the local hospital at age 16. I started having side pain around the bottom of my ribs that had me curled up in tears. After 4 days I was transferred to a hospital one hour away, and after 10 days of no answers I was transferred to a hospital 3 hours away. They started looking for an answer for all the symptoms although my side pain was the most painful and they concentrated on that the most. They mentioned I could possibly have endometriosis and brought up doing a hysterectomy just to see if it would fix the pain. Of course my mom said no way. I am very thankful she did because who wants a hysterectomy at age 16? After 4 weeks of being there I was discharged with a stack of prescription papers and no answers for random positive tests. The day after I collapsed and was paralyzed for a day and ended up being diagnosed with chronic lyme disease. I thought I had all the answers then. After less then a year my chornic lyme disease went into remission and has been since. The side pain didn't come back for awhile, but eventually it did. It would come and go more often and it would be more painful each time. Every time I would have a flare up my liver numbers would go up very high but the doctors never knew why. Back in April I started really struggling with my migraines which we have been working on fixing since the January 2009. I ended up getting the worst pain I had ever had in my head one day and I was very light headed. Then my side flared up and I was miserable. My husband took me to the ER where they gave me fluids and pain medicine in IV and a prescription to take home. The doctor in the ER was concerned about the chiari malformation I had been diagnosed with the year before and told me to make an appointment with my family doctor Monday. After no relief with my headache, or my side and my liver numbers 4x higher then they should be they admitted me the next day. After 10 days of some testing and no answers for my side pain I was sent home with pain medicine and was told to follow up and possibly go to the liver specialist if the numbers wouldn't go down. They did go down after a month or so and the side pain would come and go in the summer. More often and more painful. In between flares I was able to go camping a few times in the summer and enjoy the warm weather with my husband and my family.