7 Months of Pain, Sadness, Hope, and Faith
I've been needing to write all this down so I don't forget all that happened and all the miracles and blessings that came with it. I'm sure I've forgotten some of it already, but here goes!
Also a warning - I'm gonna talk about medical stuff, it'll probably be TMI, sorry if it grosses anyone out. But this is my way of journaling. Also I'll try to explain any LDS terms for those who don't belong to my church, but if you don't understand anything, feel free to ask me!! And grammar-wise, I'm sorry!!! I keep switching present-tense, and past-tense. I try to remember to keep it the same, but I'm writing as if I'm in the moment and then I switch and I try to go back and fix it. But sometimes it sounds better....forgive me those of you with English degrees!
April 14th - Normal day. Dean and I woke up early and went out to the church building to help clean with several members of our ward. (A ward is a designated geographical boundary that determines when you attend church and who you go with. It just makes it more organized!) Then later that day we attended the fundraiser dinner at church for the Young Women for them to raise money to go to camp that summer. It was a totally normal day. I had a blast at the dinner. Everything was normal.
April 15th - I woke up between 4-5 am with what I thought were horrible cramps. It was the 2nd day of my period and I usually get cramps so in my tiredness I didn't think anything of them and just took some ibuprofen and tried to go back to sleep. When the alarm to get up for church went off, I was laying there thinking these are not normal cramps. They hurt a lot more and were a little bit higher. I told Dean I didn't think I'd be able to make it to church because of the pain. I spent the day just monitoring the pain and by mid-afternoon I decided to call the nurse-line at the doctors office. I spoke to the nurse and she told me to just keep taking meds and use a heating pad and she made me an appointment at the doctors office for the following morning.
April 16th - Dean had taken the day off because I was in so much pain I didn't think I could drive. I got a message from the doctors office and the nurse practitioner I was scheduled to see had called in sick and they'd rescheduled me for later in the afternoon but they told me that if I couldn't wait to call in and they will see what they can do. So I called in. They arranged an appointment for me to see an OB/GYN. When I got there and she examined me, she was pretty sure that it was appendicitis. So she arranges for me to go to the ER. She says it could also be an ovarian torsion, but she is pretty sure it's appendicitis. So off to the ER we go. At the ER they do a CT and an ultrasound to see if it's either of those. The CT comes back clear, so no appendicitis. The ultrasound comes back clear as well. They tell me that it still could be appendicitis that just hasn't flared up yet, so if the pain gets worse come back in and if not check in with my PC in the next few days.
So we head home. I wake up the next day with one of my horrible migraines and spend the next 2 days in a "migraine coma". I'm taking so many meds for the migraine and trying to sleep through it that I don't know what's going on. On Thursday as the migraine starts to subside I realize the pain is still there and just as strong so I make an appointment with my PC for Friday.
When I see my PC, he looks over the CT and the ultrasound test results and is baffled by my symptoms. I'm in tons of pain. It hurts so bad to walk, to sit, to stand. The pain is lessened by laying down but doesn't go away. He suggests that it might be some sort of constipation or kidney stones. So he has me take X-rays and do blood work. And sends me home with laxatives while we wait on the blood and lab tests to see if the laxatives work. He does tell me that the ultrasound noted that there was massive vasculature on the right ovary which might be Pelvic Congestion Syndrome. He has no idea what that is and tells me it might be a good idea to make a follow up appointment with an OB for that.
The lab tests are clean and so is the x-ray and the laxatives worked, but did nothing to re-leave any of the pain. He doesn't have any appointments this week, so we are emailing back and forth. He thinks it might be some sort of gastroenteritis. So he prescribes me an antacid and tells me to start on a new diet called FODMAP. He tells me to give it a week on the meds and see how I'm doing and then I can come back in if I'm not feeling any relief.
So during all this, nothing is helping the pain. Pain meds don't really do anything to it at all. The only thing that helps is to lay down. So I'm pretty much on bed rest. I get up and take Scarlett and Alexandra to school and come home in horrible pain and lie down. I can force little things like driving for 10-15 minutes, because I have to. But I suffer for it. I really can't walk. Walking out to the car is awful. I had a few occasions that I had to walk into places like the doctors office or the school and it would take me forever and I usually ended up in tears. I like to think that I have a pretty high pain tolerance because of the migraines. So when doctors ask me to rate my pain, it's never at a 10. I've had 10's before. Some of my very first migraines were 10's. As in I begged Dean to shoot me in the head to make the pain stop. Seriously. Very Seriously. Now that I know how to handle migraines and to get massive amounts of meds in at the first sign of a headache or auras they never have a chance to get that far. The pain for this ranged about an 8 for me when I had to be up and moving. Laying down it was about a 4. I could tolerate it laying down. It never went away, but I could tolerate it.
The Sunday after the ER visit (so right before all the emailing starts) I received a priesthood blessing. In my church this is a special prayer that is given to those who are sick or who are needing help. I love priesthood blessings. I truly believe that when they are being spoken the words come straight from our Heavenly Father and that miracles can happen through them. I have had amazing miracles happen. I have had peace spoken to me. I have had specific words spoken to me through them that only my Heavenly Father could have known. I was looking forward to getting a blessing because I was hoping to be healed. I have been healed before. I have 3 girls who were born healthy that shouldn't have been. This was not one of those blessings. In fact after it was done, I honestly wished I hadn't had it. There wasn't the peace I wanted. There wasn't the healing I wanted. It was far from everything I wanted. I came to rely on the blessing throughout this and I am super grateful for it. But in that moment, I just wanted to pain to go away. At this point I don't remember all that I was told. It was over 6 months ago. But I was told that the doctors and specialists would have the help of the Holy Ghost to find out what was wrong with me. And that they would need to look for something that was not something they normally look for. And that I would need to have faith that the Holy Ghost could help them find it. Throughout the entire blessing I just felt that it was going to be a long time. I knew that this was not going to be a short period of time. That I was going to suffer. I was going to have to wait. I was going to have to see lots of doctors. I was going to have to be patient. This was not what I was wanting. I had a life to get back to. I had children to take care of. A household to manage. I talked with Dean later about the blessing and he told me that he had the impression that Heavenly Father knew that I had the faith that He could heal me, but this time He needed me to have the faith that He could heal me through others. I did not like that. But I didn't really have a choice in the matter. So as I love to tell my children - Suck it up buttercup! And so I did. From then on before every doctors appointment or test I would pray and pray. Heavenly Father you know what's wrong with me, please let the Holy Ghost help the doctors/machines see or know what it is. Let their eyes be opened. Let me answer their questions in a way to help them know what to do. And I held on to the promise in that blessing that eventually a doctor or specialist would know one day what it was.
So, the antacid did nothing. The diet was doing nothing. Not that I was really eating much at this point. The pain was so bad, I really didn't have an appetite for the first little while. So I made another appointment. My regular PC was on vacation, so I got to see a new doctor. We went through everything. She didn't think it was gastroenteritis. She thought it might be some type of IBS. She told me I could stop the antacid and not do the FODMAP diet if I wanted to. She wanted me to start taking peppermint oil, fiber, and probiotics and see if those helped. I asked a few questions about the CT. So she also through the CT and ultrasound results and actually read them to me. When she got to the ultrasound, the results said they couldn't see the right ovary at all. This sounded so weird to me. How had they ruled out an ovarian torsion if they couldn't see it? I went home thinking about this. I was still determined to keep doing the things my PC told me and add in the new supplements from this doctor hoping that something would help. But I decided to email the original OB/GYN who had sent me to the ER and ask her about the ultrasound and the Pelvic Congestion Syndrome that had been mentioned in my first visit with my PC.
She emailed me back and told me not to worry about them not seeing the ovary. If it had been an ovarian torsion the ovary would have been so swollen there would have been no way that it could not have been seen and she explained a little about Pelvic Congestion Syndrome and told me if I wanted to I could come in to see her about that. I did a little googling about PCS and thought hey this kinda matches some of my symptoms - especially the more pain when I'm standing up and walking. So I decided that when my period started again, if the pain got worse I would make an appointment to see her. In the meantime I posted about what was happening on Facebook. I got lots of hey check into this suggestions. The one that scared me most was ovarian cancer. So my period started and guess what? The pain intensified again. So I made an appointment with her. We talked about the possibility of it being PCS. She wasn't sure that it was that because of the sudden onset of the pain. But the ultrasound did show massive vasculature, so she scheduled me another ultrasound and made me a referral to a interventional radiologist. They are the doctors who diagnose and treat PCS. We also talked about cervical cancer and did a blood test for that. And she suggested I start physical therapy to see if that would help with my pain. She also put me on birth control. Since the pain got worse with my period and started when my period started, she thought that stopping me from ovulating might also help stop some of the pain.
My blood test for ovarian cancer came back fine. The new ultrasound came back completely fine. It didn't even show the massive vasculature that the ER one had shown. The radiologist had a death in the family, so the appointment that took forever to get got pushed even farther out. I had gone to several physical therapy appointments and they weren't doing anything. She could tell that I had a muscle in the very back that was spasming, but she thought it was probably caused by whatever was causing the pain instead of being what was causing the pain. And she couldn't push past to work on the muscle because I was in too much pain. So she decided to put my visits on hold until the doctors could figure out what was wrong since I had only been approved a limited amount of visits. Then I finally got into see the radiologist. He pulled up my CT and showed me the imaging and then showed me imaging of another patient that had PCS to show me what it looked like. He told me that I didn't have PCS.
I broke down in tears. I had still been taking all of the meds and supplements from the other doctors and nothing had been helping. I had felt so strongly that it was something GYN related. This matched so many of my symptoms. And I was scared for what the next step might possibly be.
My PC and the other family medicine doctor were sure it was something GI. I did not want it to be anything GI. I had never mentioned any family history of GI problems. I wasn't going there. I didn't want to go there. Up until this point I was hanging onto the fact that I wanted it to be GYN. I was sure it was GYN. It couldn't be GI, could it??? But what was left? They were ruling everything out GYN-wise. So I went back to my PC and told him about my mom.
My mom has ulcerative colitis. She was diagnosed when she was 32-33. It was horrific to watch her go through. I watched her go from being a person who could conquer the world to someone who had her whole world taken from her. She is in constant pain and her life is awful. As a teenager I thought that was the worst thing anyone could ever go through. I knew then and now that it is a genetic disease and I have a huge possibility that I could get it and it is a huge fear of mine. When I was 19, I received a Patriarchal Blessing. In my church this is a prayer you get once in your life. There is a person who is called and has the power to give these blessings. They are written down for you to read and ponder through out your life. In them are listed blessings and advice for you for your life. Sometimes you are told about certain events, or spiritual gifts you are given. They are all different and special and sacred. In mine, I am told that my life will not be marred by disease. At the time and throughout my life I have always taken that to mean that I would not get my moms illness. So even with my migraines, I have not minded because they are not ulcerative colitis.
So when the thought came that maybe this is ulcerative colitis. I was upset. Not just a little upset. A lot upset. I cried and cried. And I was mad. I was promised, I told Dean. My life would not be marred! This is marring!!! And he held me while I cried and cried and let out all my anger and frustration. And deep down I knew. I had not been promised I would not have ulcerative colitis. I had interpreted it that way. But I was so frustrated. I had been holding on to hope that whatever was wrong would be found and nothing had been found. And this was not what I wanted it to be at all. And I hadn't even been tested yet! But I had sworn that I would never ever ever have a colonoscopy after watching all the ones my mom had had to have and here I was having to have the worst test ever known to man. Okay - ever known to me.
Then I happened to mention what was going on to a friend. This friend who is an amazing women. Who has it all together. She is a mom of 7. She is active. She is someone who anyone would be inspired to be like. She told me that she has ulcerative colitis. I had no idea. You mean you can have this horrific disease and not have it ruin your life? Maybe there is hope. She gave me that hope. She helped talk me through every cup of the most nasty disgusting beverage anyone is ever forced to drink before a procedure. And I swear it was her prayers that made that 15th cup go down the next morning. Because it was not going down. And she let me know it was okay that I not try to get #16 in because most can't. Especially if all the others would come back up. This friend had actually been here for me through this whole thing. But I honestly believe that Heavenly Father put her in my life for this exact moment. I would not have made it through this without her. She gave me strength and hope.
The day of the colonoscopy came and I was terrified. I don't think I was even that scared to give birth. Thankfully I remember nothing. But when I woke up, the doctor was there and he told Dean and I that my colon looked great. I had prepared myself for the worst. But this was just as bad. Nothing?!? Nothing... Why am I in so much pain?? I cried for the next 3 hours. It had been 3 months and no one could tell me anything. Every test was coming up negative. The doctors were all nice and they believed me. They would all say they could tell I was in a lot of pain, but they just couldn't tell what was causing it and maybe it was just chronic pain and something I was going to have to live with. I couldn't stand. I couldn't walk. I had a 9 year old at home. How was this something I was going to live with???
Before the colonoscopy, the GI doctor had asked if my OB/GYN had tested me for endometriosis. They had not. So I sent off another email. The OB/GYN that I had been seeing emailed me back and told me that she did not think it was endometriosis, but that the only way to know for sure was surgery. She was not a surgeon, so I would have to see one of the surgeons. She recommended some of them and I recognized a name so I set up an appointment.
The doctor I set up the appointment with was the one who had actually delivered Scarlett. She was not my doctor for Scarlett, she was just the doctor at the hospital when Scarlett made her appearance. I was a little excited to see her. I remembered really liking her when Scarlett was born. When she came in she was very abrupt. She told me that she didn't think it was endometriosis and wasn't willing to do the surgery to find out if it was. I was just kinda in shock. I didn't know what to say. So I stuttered around with some questions and then she said she'd go confer with my original OB/GYN to see what she wanted me to do. At some point during this I think someone told her she had delivered my last baby because she came back in and was very different and friendly all of the sudden and was asking questions about Scarlett and how she was a preemie and how she did and was doing and then started really asking me questions about everything. Then my other OB got out of her appointment and they talked. They decided together to put me on a med for nerve pain and to refer me to an abdominal pain specialist. They both told me they didn't think it was anything gynecological, but that this specialist was amazing and that I should definitely see her. So I left feeling defeated. But I had another new med to try! Yay! And another new doctor. So I made the appointment. This appointment with the surgeon was on July 17th, I couldn't get into see the specialist until September 6th. I was learning to be patient.
The nerve pain med that they put me on was actually an anti-depressant that they have found has a side effect of suppressing nerve pain. So it took about a month before it started working. But once it did, it was amazing!!!!! I could walk! Not very far or for very long. I could stand! Again, not for very far or very long! I went grocery shopping for the first time in 4 months. I could buy what we needed!! I could see what was on sale!! I paid for it afterwards by being in a lot of pain, but my 30 minute trip to the store was worth it!!! That little taste of freedom meant the world to me.
I received the intake packet in the mail from the specialist that I needed to fill out and on the top it said that she was an OB/GYN....what??? I had been told over and over and over that this was not OB/GYN related. I was upset. Should I just cancel the appointment? I was feeling better. I could walk! I could semi-function. Why should I just go see another doctor who is going to tell me that it's not gynecological. But in the back of my head is that blessing telling me that a specialist will know what is wrong. So I keep the appointment and fill out the 10 page packet with all my medical history.
The day of the appointment, I have to drive 45 minutes to the office building and by the time I get to her office I'm in tons of pain. I go through all the nurse stuff and sit in her office for a while. I know she is reading through my packet before she comes in to see me. She walks in through the door and immediately says "I know what is wrong! Well, let me talk to you for a little bit first, but I'm pretty sure I know what is wrong!" WHAT??? We talk about my pregnancies and the placental abruptions, she asks about my IUD that ruptured, she asks about my periods the last few years. She asks about the pain and all the tests. We go through everything. Then she tells me that she is sure it is Adenomyosis. It explains everything. It explains my pregnancies. It explains my IUD. It explains the pain I'm feeling. It explains why the birth control has kept the pain from becoming worse again during my periods the past 5 months. It explains why the anti-depressant is working to control some of the pain. It explains EVERYTHING!!! She tells me that 80% of the time it can be detected on an MRI. So she refers me for that and we talk a little about if it is what we can do for it. Surgery, IUDs, hormones. And she sends me home with information to read about adenomyosis.
I am so excited!!! Finally someone with answers that make sense! No one had ever been able to explain why my pregnancies were horrific. And this not only answers my pain but also answers that as well. So I make the appointment for the MRI and luckily I don't have to wait long. The results for the MRI come back and are not as great as she or I would like. It only lists one spot on my uterus as likely for having adenomyosis. She tells me that it is okay. That 20% of adenomyosis cases don't even show up on MRI's and asks me what I want to do. I ask her if she is willing to do surgery, even if there isn't a 100% diagnosis. She tells me that she is so sure that this is what it is that if I'm willing to have surgery she is willing to do it. She sends me some info on hysterectomy that she wants me and Dean to read over first and discuss but if that's what I want then she will do it. I read it over and talk to Dean and decide this is what I want. So I email her back and she has her scheduler call me!
Because she is a specialist my surgery is not scheduled until November 19th, but I am okay with that. She is amazing!! She figured it out and knows what she is doing. Plus I have been in pain this long, what is another 2 months. I did receive a call from the other OB/GYN surgeon offering to do the surgery sooner, but I didn't feel good about the way she had treated me and I just didn't have a good feeling about her doing the surgery. So I talked it over with Dean and we decided to stay with the doctor that I trusted even if it means pain for another 2 months.
I spend the next two months anxiously waiting!!!! The end is in sight!! But about 3 weeks before my surgery the medicine that helps to surpress the nerve pain starts to have some side effects. So I email my new favorite doctor in the whole world and we take me off of that med. She starts me on a new med, that unfortunately does not work as well, so after a few days of the old med leaving my system I'm back to being in as much pain as before. I only have a few more weeks to go though, so I know I can tough it out!
The night before surgery I have another priesthood blessing. This one is amazing!!! I'm told that everything will go well with the surgery. That the doctors will be amazed by my recovery. That I will heal even better than I was before. I'm told that the Lord has a plan for me and that this trial was a preparation for that plan. I feel loved!! I feel at peace!! I feel comforted!! There are many other things that I was told. But the big feeling I received was that everything was going to be fine.
Surgery morning! I am not nervous. Really, I'm not! I know that everything is going to be fine. My body on the other hand will not listen to my heart or my head. It wants to puke. All the doctors and nurses are in and out introducing themselves and letting us know what part they are going to play in my surgery. Finally my doctor comes in and I'm excited to see her! Then I'm wheeled away to surgery where I don't remember anything until I wake up in pain in recovery. It takes them a long time to get my pain in control. My left side hurts more than my right side. Which is hilarious to me. The right side is just so used to pain that it was like - chopping organs out, no biggie!! Finally my pain starts to get managed so they take me to another recovery room where they bring Dean in. He gets to tell me all about the surgery and the pictures that he got to see. They ended up taking my right ovary as well as my uterus. He tells me that they did find huge veins (Pelvic Congestion Syndrome - remember that thing that I didn't have) on my right ovary and on my left fallopian tube, adenomyosis, and fibroids. Once I'm finally up and pee and get dressed, they are able to release me.
The next day, I'm supposed to try to walk 4 times for 10 minutes. I only manage to make it twice. But I am amazed!!!! I couldn't even have done this the day before my surgery without being in horrible pain. I'm super slow, but I manage!! The next day I get all 4 walks in and by the end of the week I'm moving so well I'm even considering upping the time or the pace, but decide against it because I don't want to hinder my recovery. I only need hard core pain meds for 4 days and then another week for over the counter. I am so surprised at how little pain I'm in and how amazing I feel. I have to keep telling myself to not do anything because I don't want to ruin the surgery because of doing something dumb. This will be repeated to myself many, many times over the next few weeks. Although I do learn that my stamina is not anywhere near the capacity that I think it should be. Just because I feel amazing doesn't mean that my body can accomplish what I think it should be able to.
My 4 week post-op follow up was this week and I'm healing great! I got to see the pictures of everything before it was removed. It was pretty amazing to see the uterus with the adenomyosis. It looks like bleeding lesions that have perforated the uterus. It looks like pain!! My doctor also told me that when they saw the veins on the right ovary, they tilted the table to see what would happen when I was in a standing position and the blood flowed into them. Apparently they filled up with blood and got ginormous! No wonder I was in so much pain when I was standing or walking. She said she removed them with as much clean margins as possible, but like all varicose veins they can still possibly come back onto the left ovary. Hopefully not, but now that I know and have a history of it, we can take care of it if the pain ever comes back again.
At the very beginning of this there was a lot going on in our household. Alexandra had been hospitalized 2 months before, we'd been dealing with getting her homebound schooling, 2 weeks before this happened Riley confessed to us that she hadn't been eating and thought that she was anorexic (she was and had treatment all through the summer). My best friend and I joked that it was all stress related. And with all of that going on I thought, yeah it really could be. And then when the questioning of why is this happening to me on top of all the rest of this started, I thought it was so that others in my household would learn to step up and help out. I had felt so alone in dealing with a lot of these things and with a lot of the household daily stuff as well. Now everyone else in the household would have to deal with the cooking and cleaning and figuring out how to get everyone everywhere. Because I could only do the minimum of getting kids to school and doctors appointments and that was because it had to happen. And after I did those things I would collapse in my bed in pain. (Shout out to those who helped with picking up Scarlett for me!! And to all those that offered rides for everything else as well! I'm not great at accepting help - even though I should have accepted it a lot more.) After a few months, my attitude changed. I slowly realized that I was the one that was changing. I was spending more time talking to my Heavenly Father. I was spending more time listening to the Holy Ghost. I was spending more time realizing what was truly important as those things were taken from me. I grew so much. Now I know that this time truly was for me. It gave me time to change. To realize that I needed to stop procrastinating.
I always thought I had plenty of time to exercise and lose the weight I wanted to lose. Hey, I can't help it if I have headaches and depression and it keeps me from exercising everyday. But when overnight, not only is exercising taken from you, but just the ability to walk is taken. You realize what is important. I know it sounds vain, but the thought that I had missed any opportunity to lose weight and would most likely just gain more because I couldn't do basic things was a catastrophic thought to me.
Doing things with my kids. Every summer we have things we do as a family. We sign up for the summer library programs. We go to Water World. We use the coupons earned at the library. We go to parks. We go swimming. My girls got to do none of that this summer. It broke my heart. It still makes me cry to think about their horrible summer. But we did start some things that have been amazing. Scarlett and I read every night together. It was a way we had of spending time together just the two of us during all of this. We are currently on book 7 of Harry Potter. One of the best times I had was watching All the Boys I've Loved with Riley and Alexandra on my bed. We sat and giggled and awwwwwed and enjoyed a teenage chic-flick together just the three of us! It was great! I learned not to take any moment for granted. I know that we all know the saying about any moment could be our last, but I really did have a "last moment" for possibly being able to have a normal life and it gave me a whole new outlook and what it important.
I've learned to forgive. Truly forgive. There is a lot that I've held onto for various reasons. I don't need to hold onto that anymore. Life's too short. Let it go. Seriously.
Dean and I have had great conversations. It helps when you are stuck in one spot and can't do anything, that you make people sit with you and listen to everything you have thought about all day. I want us to have the best relationship ever. I'm more committed to that then I have ever been in the last 18 years we've been married.
I became so much more empathetic. I know what it is to suffer. And seeing others suffer now, hurts me too. I wish I could help them. In fact I want to help so many people. I became so much more willing to seek out those that need help. I would watch videos on Facebook of people helping others and I would wish that I could do that too. I'm not sure where I want to start, but I know that I want to do something for others. I know that there are so many different charities that need help and people out there that need help. I haven't decided where my help is needed, but I'm going to find out and do something. I just feel in my heart that it is what I need to do.
I know that my Heavenly Father and my Savior, Jesus Christ were there with me during every step of this. They were there when I was complaining. They were there listening when I prayed. They were there comforting me during the many, many hours that I cried. They knew that I had to go through this to gain the knowledge, the empathy, the growth that I needed to become the person that I am now. As much as I hate to say that I'm thankful for it, I am in a weird way. I'm so much of a better person now! So much better!!! I have so many goals and things that I want to accomplish with my life. I hope that I can hold onto this perspective and keep those goals in my sight and keep striving to become the person that I know I can become.
So...be kind, have faith, believe in miracles, don't procrastinate, have hope, live in the moment, forgive, love, enjoy every second, do things that matter, don't waste time, accept help.
Also a warning - I'm gonna talk about medical stuff, it'll probably be TMI, sorry if it grosses anyone out. But this is my way of journaling. Also I'll try to explain any LDS terms for those who don't belong to my church, but if you don't understand anything, feel free to ask me!! And grammar-wise, I'm sorry!!! I keep switching present-tense, and past-tense. I try to remember to keep it the same, but I'm writing as if I'm in the moment and then I switch and I try to go back and fix it. But sometimes it sounds better....forgive me those of you with English degrees!
April 14th - Normal day. Dean and I woke up early and went out to the church building to help clean with several members of our ward. (A ward is a designated geographical boundary that determines when you attend church and who you go with. It just makes it more organized!) Then later that day we attended the fundraiser dinner at church for the Young Women for them to raise money to go to camp that summer. It was a totally normal day. I had a blast at the dinner. Everything was normal.
April 15th - I woke up between 4-5 am with what I thought were horrible cramps. It was the 2nd day of my period and I usually get cramps so in my tiredness I didn't think anything of them and just took some ibuprofen and tried to go back to sleep. When the alarm to get up for church went off, I was laying there thinking these are not normal cramps. They hurt a lot more and were a little bit higher. I told Dean I didn't think I'd be able to make it to church because of the pain. I spent the day just monitoring the pain and by mid-afternoon I decided to call the nurse-line at the doctors office. I spoke to the nurse and she told me to just keep taking meds and use a heating pad and she made me an appointment at the doctors office for the following morning.
April 16th - Dean had taken the day off because I was in so much pain I didn't think I could drive. I got a message from the doctors office and the nurse practitioner I was scheduled to see had called in sick and they'd rescheduled me for later in the afternoon but they told me that if I couldn't wait to call in and they will see what they can do. So I called in. They arranged an appointment for me to see an OB/GYN. When I got there and she examined me, she was pretty sure that it was appendicitis. So she arranges for me to go to the ER. She says it could also be an ovarian torsion, but she is pretty sure it's appendicitis. So off to the ER we go. At the ER they do a CT and an ultrasound to see if it's either of those. The CT comes back clear, so no appendicitis. The ultrasound comes back clear as well. They tell me that it still could be appendicitis that just hasn't flared up yet, so if the pain gets worse come back in and if not check in with my PC in the next few days.
So we head home. I wake up the next day with one of my horrible migraines and spend the next 2 days in a "migraine coma". I'm taking so many meds for the migraine and trying to sleep through it that I don't know what's going on. On Thursday as the migraine starts to subside I realize the pain is still there and just as strong so I make an appointment with my PC for Friday.
When I see my PC, he looks over the CT and the ultrasound test results and is baffled by my symptoms. I'm in tons of pain. It hurts so bad to walk, to sit, to stand. The pain is lessened by laying down but doesn't go away. He suggests that it might be some sort of constipation or kidney stones. So he has me take X-rays and do blood work. And sends me home with laxatives while we wait on the blood and lab tests to see if the laxatives work. He does tell me that the ultrasound noted that there was massive vasculature on the right ovary which might be Pelvic Congestion Syndrome. He has no idea what that is and tells me it might be a good idea to make a follow up appointment with an OB for that.
The lab tests are clean and so is the x-ray and the laxatives worked, but did nothing to re-leave any of the pain. He doesn't have any appointments this week, so we are emailing back and forth. He thinks it might be some sort of gastroenteritis. So he prescribes me an antacid and tells me to start on a new diet called FODMAP. He tells me to give it a week on the meds and see how I'm doing and then I can come back in if I'm not feeling any relief.
So during all this, nothing is helping the pain. Pain meds don't really do anything to it at all. The only thing that helps is to lay down. So I'm pretty much on bed rest. I get up and take Scarlett and Alexandra to school and come home in horrible pain and lie down. I can force little things like driving for 10-15 minutes, because I have to. But I suffer for it. I really can't walk. Walking out to the car is awful. I had a few occasions that I had to walk into places like the doctors office or the school and it would take me forever and I usually ended up in tears. I like to think that I have a pretty high pain tolerance because of the migraines. So when doctors ask me to rate my pain, it's never at a 10. I've had 10's before. Some of my very first migraines were 10's. As in I begged Dean to shoot me in the head to make the pain stop. Seriously. Very Seriously. Now that I know how to handle migraines and to get massive amounts of meds in at the first sign of a headache or auras they never have a chance to get that far. The pain for this ranged about an 8 for me when I had to be up and moving. Laying down it was about a 4. I could tolerate it laying down. It never went away, but I could tolerate it.
The Sunday after the ER visit (so right before all the emailing starts) I received a priesthood blessing. In my church this is a special prayer that is given to those who are sick or who are needing help. I love priesthood blessings. I truly believe that when they are being spoken the words come straight from our Heavenly Father and that miracles can happen through them. I have had amazing miracles happen. I have had peace spoken to me. I have had specific words spoken to me through them that only my Heavenly Father could have known. I was looking forward to getting a blessing because I was hoping to be healed. I have been healed before. I have 3 girls who were born healthy that shouldn't have been. This was not one of those blessings. In fact after it was done, I honestly wished I hadn't had it. There wasn't the peace I wanted. There wasn't the healing I wanted. It was far from everything I wanted. I came to rely on the blessing throughout this and I am super grateful for it. But in that moment, I just wanted to pain to go away. At this point I don't remember all that I was told. It was over 6 months ago. But I was told that the doctors and specialists would have the help of the Holy Ghost to find out what was wrong with me. And that they would need to look for something that was not something they normally look for. And that I would need to have faith that the Holy Ghost could help them find it. Throughout the entire blessing I just felt that it was going to be a long time. I knew that this was not going to be a short period of time. That I was going to suffer. I was going to have to wait. I was going to have to see lots of doctors. I was going to have to be patient. This was not what I was wanting. I had a life to get back to. I had children to take care of. A household to manage. I talked with Dean later about the blessing and he told me that he had the impression that Heavenly Father knew that I had the faith that He could heal me, but this time He needed me to have the faith that He could heal me through others. I did not like that. But I didn't really have a choice in the matter. So as I love to tell my children - Suck it up buttercup! And so I did. From then on before every doctors appointment or test I would pray and pray. Heavenly Father you know what's wrong with me, please let the Holy Ghost help the doctors/machines see or know what it is. Let their eyes be opened. Let me answer their questions in a way to help them know what to do. And I held on to the promise in that blessing that eventually a doctor or specialist would know one day what it was.
So, the antacid did nothing. The diet was doing nothing. Not that I was really eating much at this point. The pain was so bad, I really didn't have an appetite for the first little while. So I made another appointment. My regular PC was on vacation, so I got to see a new doctor. We went through everything. She didn't think it was gastroenteritis. She thought it might be some type of IBS. She told me I could stop the antacid and not do the FODMAP diet if I wanted to. She wanted me to start taking peppermint oil, fiber, and probiotics and see if those helped. I asked a few questions about the CT. So she also through the CT and ultrasound results and actually read them to me. When she got to the ultrasound, the results said they couldn't see the right ovary at all. This sounded so weird to me. How had they ruled out an ovarian torsion if they couldn't see it? I went home thinking about this. I was still determined to keep doing the things my PC told me and add in the new supplements from this doctor hoping that something would help. But I decided to email the original OB/GYN who had sent me to the ER and ask her about the ultrasound and the Pelvic Congestion Syndrome that had been mentioned in my first visit with my PC.
She emailed me back and told me not to worry about them not seeing the ovary. If it had been an ovarian torsion the ovary would have been so swollen there would have been no way that it could not have been seen and she explained a little about Pelvic Congestion Syndrome and told me if I wanted to I could come in to see her about that. I did a little googling about PCS and thought hey this kinda matches some of my symptoms - especially the more pain when I'm standing up and walking. So I decided that when my period started again, if the pain got worse I would make an appointment to see her. In the meantime I posted about what was happening on Facebook. I got lots of hey check into this suggestions. The one that scared me most was ovarian cancer. So my period started and guess what? The pain intensified again. So I made an appointment with her. We talked about the possibility of it being PCS. She wasn't sure that it was that because of the sudden onset of the pain. But the ultrasound did show massive vasculature, so she scheduled me another ultrasound and made me a referral to a interventional radiologist. They are the doctors who diagnose and treat PCS. We also talked about cervical cancer and did a blood test for that. And she suggested I start physical therapy to see if that would help with my pain. She also put me on birth control. Since the pain got worse with my period and started when my period started, she thought that stopping me from ovulating might also help stop some of the pain.
My blood test for ovarian cancer came back fine. The new ultrasound came back completely fine. It didn't even show the massive vasculature that the ER one had shown. The radiologist had a death in the family, so the appointment that took forever to get got pushed even farther out. I had gone to several physical therapy appointments and they weren't doing anything. She could tell that I had a muscle in the very back that was spasming, but she thought it was probably caused by whatever was causing the pain instead of being what was causing the pain. And she couldn't push past to work on the muscle because I was in too much pain. So she decided to put my visits on hold until the doctors could figure out what was wrong since I had only been approved a limited amount of visits. Then I finally got into see the radiologist. He pulled up my CT and showed me the imaging and then showed me imaging of another patient that had PCS to show me what it looked like. He told me that I didn't have PCS.
I broke down in tears. I had still been taking all of the meds and supplements from the other doctors and nothing had been helping. I had felt so strongly that it was something GYN related. This matched so many of my symptoms. And I was scared for what the next step might possibly be.
My PC and the other family medicine doctor were sure it was something GI. I did not want it to be anything GI. I had never mentioned any family history of GI problems. I wasn't going there. I didn't want to go there. Up until this point I was hanging onto the fact that I wanted it to be GYN. I was sure it was GYN. It couldn't be GI, could it??? But what was left? They were ruling everything out GYN-wise. So I went back to my PC and told him about my mom.
My mom has ulcerative colitis. She was diagnosed when she was 32-33. It was horrific to watch her go through. I watched her go from being a person who could conquer the world to someone who had her whole world taken from her. She is in constant pain and her life is awful. As a teenager I thought that was the worst thing anyone could ever go through. I knew then and now that it is a genetic disease and I have a huge possibility that I could get it and it is a huge fear of mine. When I was 19, I received a Patriarchal Blessing. In my church this is a prayer you get once in your life. There is a person who is called and has the power to give these blessings. They are written down for you to read and ponder through out your life. In them are listed blessings and advice for you for your life. Sometimes you are told about certain events, or spiritual gifts you are given. They are all different and special and sacred. In mine, I am told that my life will not be marred by disease. At the time and throughout my life I have always taken that to mean that I would not get my moms illness. So even with my migraines, I have not minded because they are not ulcerative colitis.
So when the thought came that maybe this is ulcerative colitis. I was upset. Not just a little upset. A lot upset. I cried and cried. And I was mad. I was promised, I told Dean. My life would not be marred! This is marring!!! And he held me while I cried and cried and let out all my anger and frustration. And deep down I knew. I had not been promised I would not have ulcerative colitis. I had interpreted it that way. But I was so frustrated. I had been holding on to hope that whatever was wrong would be found and nothing had been found. And this was not what I wanted it to be at all. And I hadn't even been tested yet! But I had sworn that I would never ever ever have a colonoscopy after watching all the ones my mom had had to have and here I was having to have the worst test ever known to man. Okay - ever known to me.
Then I happened to mention what was going on to a friend. This friend who is an amazing women. Who has it all together. She is a mom of 7. She is active. She is someone who anyone would be inspired to be like. She told me that she has ulcerative colitis. I had no idea. You mean you can have this horrific disease and not have it ruin your life? Maybe there is hope. She gave me that hope. She helped talk me through every cup of the most nasty disgusting beverage anyone is ever forced to drink before a procedure. And I swear it was her prayers that made that 15th cup go down the next morning. Because it was not going down. And she let me know it was okay that I not try to get #16 in because most can't. Especially if all the others would come back up. This friend had actually been here for me through this whole thing. But I honestly believe that Heavenly Father put her in my life for this exact moment. I would not have made it through this without her. She gave me strength and hope.
The day of the colonoscopy came and I was terrified. I don't think I was even that scared to give birth. Thankfully I remember nothing. But when I woke up, the doctor was there and he told Dean and I that my colon looked great. I had prepared myself for the worst. But this was just as bad. Nothing?!? Nothing... Why am I in so much pain?? I cried for the next 3 hours. It had been 3 months and no one could tell me anything. Every test was coming up negative. The doctors were all nice and they believed me. They would all say they could tell I was in a lot of pain, but they just couldn't tell what was causing it and maybe it was just chronic pain and something I was going to have to live with. I couldn't stand. I couldn't walk. I had a 9 year old at home. How was this something I was going to live with???
Before the colonoscopy, the GI doctor had asked if my OB/GYN had tested me for endometriosis. They had not. So I sent off another email. The OB/GYN that I had been seeing emailed me back and told me that she did not think it was endometriosis, but that the only way to know for sure was surgery. She was not a surgeon, so I would have to see one of the surgeons. She recommended some of them and I recognized a name so I set up an appointment.
The doctor I set up the appointment with was the one who had actually delivered Scarlett. She was not my doctor for Scarlett, she was just the doctor at the hospital when Scarlett made her appearance. I was a little excited to see her. I remembered really liking her when Scarlett was born. When she came in she was very abrupt. She told me that she didn't think it was endometriosis and wasn't willing to do the surgery to find out if it was. I was just kinda in shock. I didn't know what to say. So I stuttered around with some questions and then she said she'd go confer with my original OB/GYN to see what she wanted me to do. At some point during this I think someone told her she had delivered my last baby because she came back in and was very different and friendly all of the sudden and was asking questions about Scarlett and how she was a preemie and how she did and was doing and then started really asking me questions about everything. Then my other OB got out of her appointment and they talked. They decided together to put me on a med for nerve pain and to refer me to an abdominal pain specialist. They both told me they didn't think it was anything gynecological, but that this specialist was amazing and that I should definitely see her. So I left feeling defeated. But I had another new med to try! Yay! And another new doctor. So I made the appointment. This appointment with the surgeon was on July 17th, I couldn't get into see the specialist until September 6th. I was learning to be patient.
The nerve pain med that they put me on was actually an anti-depressant that they have found has a side effect of suppressing nerve pain. So it took about a month before it started working. But once it did, it was amazing!!!!! I could walk! Not very far or for very long. I could stand! Again, not for very far or very long! I went grocery shopping for the first time in 4 months. I could buy what we needed!! I could see what was on sale!! I paid for it afterwards by being in a lot of pain, but my 30 minute trip to the store was worth it!!! That little taste of freedom meant the world to me.
I received the intake packet in the mail from the specialist that I needed to fill out and on the top it said that she was an OB/GYN....what??? I had been told over and over and over that this was not OB/GYN related. I was upset. Should I just cancel the appointment? I was feeling better. I could walk! I could semi-function. Why should I just go see another doctor who is going to tell me that it's not gynecological. But in the back of my head is that blessing telling me that a specialist will know what is wrong. So I keep the appointment and fill out the 10 page packet with all my medical history.
The day of the appointment, I have to drive 45 minutes to the office building and by the time I get to her office I'm in tons of pain. I go through all the nurse stuff and sit in her office for a while. I know she is reading through my packet before she comes in to see me. She walks in through the door and immediately says "I know what is wrong! Well, let me talk to you for a little bit first, but I'm pretty sure I know what is wrong!" WHAT??? We talk about my pregnancies and the placental abruptions, she asks about my IUD that ruptured, she asks about my periods the last few years. She asks about the pain and all the tests. We go through everything. Then she tells me that she is sure it is Adenomyosis. It explains everything. It explains my pregnancies. It explains my IUD. It explains the pain I'm feeling. It explains why the birth control has kept the pain from becoming worse again during my periods the past 5 months. It explains why the anti-depressant is working to control some of the pain. It explains EVERYTHING!!! She tells me that 80% of the time it can be detected on an MRI. So she refers me for that and we talk a little about if it is what we can do for it. Surgery, IUDs, hormones. And she sends me home with information to read about adenomyosis.
I am so excited!!! Finally someone with answers that make sense! No one had ever been able to explain why my pregnancies were horrific. And this not only answers my pain but also answers that as well. So I make the appointment for the MRI and luckily I don't have to wait long. The results for the MRI come back and are not as great as she or I would like. It only lists one spot on my uterus as likely for having adenomyosis. She tells me that it is okay. That 20% of adenomyosis cases don't even show up on MRI's and asks me what I want to do. I ask her if she is willing to do surgery, even if there isn't a 100% diagnosis. She tells me that she is so sure that this is what it is that if I'm willing to have surgery she is willing to do it. She sends me some info on hysterectomy that she wants me and Dean to read over first and discuss but if that's what I want then she will do it. I read it over and talk to Dean and decide this is what I want. So I email her back and she has her scheduler call me!
Because she is a specialist my surgery is not scheduled until November 19th, but I am okay with that. She is amazing!! She figured it out and knows what she is doing. Plus I have been in pain this long, what is another 2 months. I did receive a call from the other OB/GYN surgeon offering to do the surgery sooner, but I didn't feel good about the way she had treated me and I just didn't have a good feeling about her doing the surgery. So I talked it over with Dean and we decided to stay with the doctor that I trusted even if it means pain for another 2 months.
I spend the next two months anxiously waiting!!!! The end is in sight!! But about 3 weeks before my surgery the medicine that helps to surpress the nerve pain starts to have some side effects. So I email my new favorite doctor in the whole world and we take me off of that med. She starts me on a new med, that unfortunately does not work as well, so after a few days of the old med leaving my system I'm back to being in as much pain as before. I only have a few more weeks to go though, so I know I can tough it out!
The night before surgery I have another priesthood blessing. This one is amazing!!! I'm told that everything will go well with the surgery. That the doctors will be amazed by my recovery. That I will heal even better than I was before. I'm told that the Lord has a plan for me and that this trial was a preparation for that plan. I feel loved!! I feel at peace!! I feel comforted!! There are many other things that I was told. But the big feeling I received was that everything was going to be fine.
Surgery morning! I am not nervous. Really, I'm not! I know that everything is going to be fine. My body on the other hand will not listen to my heart or my head. It wants to puke. All the doctors and nurses are in and out introducing themselves and letting us know what part they are going to play in my surgery. Finally my doctor comes in and I'm excited to see her! Then I'm wheeled away to surgery where I don't remember anything until I wake up in pain in recovery. It takes them a long time to get my pain in control. My left side hurts more than my right side. Which is hilarious to me. The right side is just so used to pain that it was like - chopping organs out, no biggie!! Finally my pain starts to get managed so they take me to another recovery room where they bring Dean in. He gets to tell me all about the surgery and the pictures that he got to see. They ended up taking my right ovary as well as my uterus. He tells me that they did find huge veins (Pelvic Congestion Syndrome - remember that thing that I didn't have) on my right ovary and on my left fallopian tube, adenomyosis, and fibroids. Once I'm finally up and pee and get dressed, they are able to release me.
The next day, I'm supposed to try to walk 4 times for 10 minutes. I only manage to make it twice. But I am amazed!!!! I couldn't even have done this the day before my surgery without being in horrible pain. I'm super slow, but I manage!! The next day I get all 4 walks in and by the end of the week I'm moving so well I'm even considering upping the time or the pace, but decide against it because I don't want to hinder my recovery. I only need hard core pain meds for 4 days and then another week for over the counter. I am so surprised at how little pain I'm in and how amazing I feel. I have to keep telling myself to not do anything because I don't want to ruin the surgery because of doing something dumb. This will be repeated to myself many, many times over the next few weeks. Although I do learn that my stamina is not anywhere near the capacity that I think it should be. Just because I feel amazing doesn't mean that my body can accomplish what I think it should be able to.
My 4 week post-op follow up was this week and I'm healing great! I got to see the pictures of everything before it was removed. It was pretty amazing to see the uterus with the adenomyosis. It looks like bleeding lesions that have perforated the uterus. It looks like pain!! My doctor also told me that when they saw the veins on the right ovary, they tilted the table to see what would happen when I was in a standing position and the blood flowed into them. Apparently they filled up with blood and got ginormous! No wonder I was in so much pain when I was standing or walking. She said she removed them with as much clean margins as possible, but like all varicose veins they can still possibly come back onto the left ovary. Hopefully not, but now that I know and have a history of it, we can take care of it if the pain ever comes back again.
At the very beginning of this there was a lot going on in our household. Alexandra had been hospitalized 2 months before, we'd been dealing with getting her homebound schooling, 2 weeks before this happened Riley confessed to us that she hadn't been eating and thought that she was anorexic (she was and had treatment all through the summer). My best friend and I joked that it was all stress related. And with all of that going on I thought, yeah it really could be. And then when the questioning of why is this happening to me on top of all the rest of this started, I thought it was so that others in my household would learn to step up and help out. I had felt so alone in dealing with a lot of these things and with a lot of the household daily stuff as well. Now everyone else in the household would have to deal with the cooking and cleaning and figuring out how to get everyone everywhere. Because I could only do the minimum of getting kids to school and doctors appointments and that was because it had to happen. And after I did those things I would collapse in my bed in pain. (Shout out to those who helped with picking up Scarlett for me!! And to all those that offered rides for everything else as well! I'm not great at accepting help - even though I should have accepted it a lot more.) After a few months, my attitude changed. I slowly realized that I was the one that was changing. I was spending more time talking to my Heavenly Father. I was spending more time listening to the Holy Ghost. I was spending more time realizing what was truly important as those things were taken from me. I grew so much. Now I know that this time truly was for me. It gave me time to change. To realize that I needed to stop procrastinating.
I always thought I had plenty of time to exercise and lose the weight I wanted to lose. Hey, I can't help it if I have headaches and depression and it keeps me from exercising everyday. But when overnight, not only is exercising taken from you, but just the ability to walk is taken. You realize what is important. I know it sounds vain, but the thought that I had missed any opportunity to lose weight and would most likely just gain more because I couldn't do basic things was a catastrophic thought to me.
Doing things with my kids. Every summer we have things we do as a family. We sign up for the summer library programs. We go to Water World. We use the coupons earned at the library. We go to parks. We go swimming. My girls got to do none of that this summer. It broke my heart. It still makes me cry to think about their horrible summer. But we did start some things that have been amazing. Scarlett and I read every night together. It was a way we had of spending time together just the two of us during all of this. We are currently on book 7 of Harry Potter. One of the best times I had was watching All the Boys I've Loved with Riley and Alexandra on my bed. We sat and giggled and awwwwwed and enjoyed a teenage chic-flick together just the three of us! It was great! I learned not to take any moment for granted. I know that we all know the saying about any moment could be our last, but I really did have a "last moment" for possibly being able to have a normal life and it gave me a whole new outlook and what it important.
I've learned to forgive. Truly forgive. There is a lot that I've held onto for various reasons. I don't need to hold onto that anymore. Life's too short. Let it go. Seriously.
Dean and I have had great conversations. It helps when you are stuck in one spot and can't do anything, that you make people sit with you and listen to everything you have thought about all day. I want us to have the best relationship ever. I'm more committed to that then I have ever been in the last 18 years we've been married.
I became so much more empathetic. I know what it is to suffer. And seeing others suffer now, hurts me too. I wish I could help them. In fact I want to help so many people. I became so much more willing to seek out those that need help. I would watch videos on Facebook of people helping others and I would wish that I could do that too. I'm not sure where I want to start, but I know that I want to do something for others. I know that there are so many different charities that need help and people out there that need help. I haven't decided where my help is needed, but I'm going to find out and do something. I just feel in my heart that it is what I need to do.
I know that my Heavenly Father and my Savior, Jesus Christ were there with me during every step of this. They were there when I was complaining. They were there listening when I prayed. They were there comforting me during the many, many hours that I cried. They knew that I had to go through this to gain the knowledge, the empathy, the growth that I needed to become the person that I am now. As much as I hate to say that I'm thankful for it, I am in a weird way. I'm so much of a better person now! So much better!!! I have so many goals and things that I want to accomplish with my life. I hope that I can hold onto this perspective and keep those goals in my sight and keep striving to become the person that I know I can become.
So...be kind, have faith, believe in miracles, don't procrastinate, have hope, live in the moment, forgive, love, enjoy every second, do things that matter, don't waste time, accept help.
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