Hello Friends! — August 25, 2017

Hello Friends!

It’s been SUCH a long time! So much has happened, yet time seems to stand still some days. I’m at a point in my journey where the pain is now chronic. If I don’t have a heating pad, ice pack or a comfortable place to sit I am very much in pain. Pain so much that it starts in my lower back and radiates up to my shoulders. I cramp randomly and I never know when they’ll happen. I don’t sleep because of the Lupron and am now seeking the help of a physical therapist.

For those that don’t know Depo-Lupron is a shot that stops a woman from having a period. I had it last year but don’t remember much of it because it was only one month doses. This time I got the 3 month dose. Lupron will force your reproductive system into menopause. You know all those times when your mom says “Is anybody else hot in here?” and you think okay you’re a little nuts… that has turned into me multiple times a day. I have hot flashes so bad it gets hard to breathe and I start sweating. There is nothing anyone can do I am supposed to be hitting a window where they will plateau. I’m hoping those moments are coming soon because I don’t want to relive this again 20-25 years. After this we’ll go through the IVF process. I am ready right now to start the process. I would start tomorrow if it were possible, however, we all know that unless you’re famous or just have a very well paying job, it takes time to save up the money for IVF. As I’ve stated before we have agreed to do whatever it takes to do this. I don’t think either of us have wanted something more in our lives.

I’m going through physical therapy because I can’t keep taking medications to help with the back pain. I am seeing a woman named Ellen and she is amazing! She knows about scar tissue and the damage it can cause to your organs. She explained to me that my lower abdominal muscles were extremely weak. She said my intestines were stuck in places it shouldn’t be and my pelvis is tilted all the way to my tailbone (ouch!). I have 30 sessions with her and she is hopeful we’ll be able to get my body in a better place. This will not only allow me to start working out again but it will be a better vessel to carry a baby(ies). Ellen knows about endometriosis and it’s effects on the female body. She has also an adoptive daughter. For me I really need to be able to connect to the staff at my doctor’s offices. At the IVF office I know one of the nurses and all the other women are so incredibly invested in us getting pregnant that I feel like I’ve connected with them. The staff Kettering Hospital is always great when I go there if I’m having a real bad flair up. And now Ellen. She was telling me about her journey through adoption and that it wasn’t easy but she now has this beautiful daughter whom she is very thankful for. I can already tell we’ll be laughing and healing at the same time!

Well, I think that’s all I have for now. I’m going to try to get some sleep but it looks nearly impossible at this point 😉 I hope everyone has a great weekend ahead of them and a GREAT National Fantasy Football Day on Saturday!

 

Until Next Time,

xoxo

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Faith, Hope, Love — July 10, 2017

Faith, Hope, Love

1 John 5:14 He heard her.  And not only that, but in due time, He will answer.

Recently I’ve been thinking a lot about our journey through infertility. I have all the faith in the world that what is supposed to happen will happen. But I would be lying if I said I wouldn’t want to have a super power to see the future. Having faith in the universe is what keeps me going. The faith my husband puts, not only on me but our marriage and hoping one day things will be okay. This brings me to my next word: Hope. I remember talking with dad about what the progress is and what it means for us. For those not in the inner circle there are a lot things I have to explain because it’s all quite confusing. I had called my dad just needing to talk to him, get his advice. He said something that stayed with me. He said ” The worst thing to have is hope”. Now for most people you’re probably thinking “what in the world?” or “why would he say that?”. I understood immediately what he meant. Russell and I had just had our first IUI at this point and I was in that dreaded two week wait period. That’s when my dad said hope is the worst thing to have because you can get let down so easily. Take for example, about 3 months ago I gave myself the trigger shot to release an egg and we were to try on our own. Once we were waiting for what could happen I was already rearranging the bedrooms and daydreaming of what a nursery would look like. I went and got paint samples to see what would look best in a gender neutral room. I cleared out the office to make room for a baby crib, glider, functional yet usable pieces of furniture, a dresser with changing table and dreamed of the decor for the room, and I didn’t know if a baby had been created or not. Two weeks later we all know what happened… Aunt Flo decided to show up shattering my dreams. The next month was our IUI and the same shattering dreams, pit in the bottom of my stomach feeling came over me. The constant throughout all of this has been love. Love from my husband. Love from my family. Love from my friends. Love from people trying to understand what endometriosis is and askin questions so they understand. Love from some of the best co-workers a girl could ask for. Love has shown me that it can be hard, real hard. It can be stressful, it can be heart breaking. But in those heartbreaking moments I try to find the light. Without the love from everyone I would be lost. For example, I saw a woman who had to be about 8 months pregnant today. I waited on her and her family and I kept catching myself starring at her belly, wondering if I’ll ever get to experience that feeling. The feeling of life growing inside you but also that undeniable connection between a mother and her baby. Will I get to kiss a little newborn baby’s face and watch them grow from little babies all the way up to becoming an adult? I don’t know the answers to those questions. But I continue to have hope. Hope that one day someone will call me ‘mommy’. In the meantime I have to realize things happen when they’re supposed to and that each person’s journey will vary greatly.

As usual, please feel free to prayer, send positive vibes, and hope that one day Baby Young will make an appearance!

Until Next Time

xoxo

Endo Update — June 28, 2017

Endo Update

So I went to see Dr. Karnitis at Kettering Hospital today. It was a routine ultrasound because I’ve been having a lot of pain in my lower back and pelvic area. Like so much so that I cried on Sunday and had to leave an event early. So thankful to say everything looks great. My ovary (or what remains) has several follicles on it, which in and of itself is amazing! My uterus looks great and has a nice thick lining. Basically, Dr. Karnitis says my body is at it’s peak for holding a baby. However, the road to getting there is going to be more difficult than we thought this entire time. So let me give you a little insight as to what has happened. For a while I wanted to stay private and go through this with my husband and family but then that became a lot and I just started not talking about our journey. BUT, I need an outlet and I feel like this is a really good outlet for me.

When Russell and I first met Dr. Karnitis, we were going over my previous surgery notes. Again, he was so shocked that I’d had that much surgery in such a short amount of time. Then he started talking about my AMH levels. I’d never heard of that and I’m assuming you haven’t either. AMH is a hormone that your body, more specifically for a woman it’s in her ovaries. Your AMH level is going to tell a doctor at what percentage you are able to conceive. What I didn’t realize is my AMH level is at a 0.1. This means my reproductive system functions at the level of a woman who is 42 or older. For a woman my age my AMH should be 1.1-3.2. So this means I have less than a 5% chance of conceiving on my own.  This part of the blog is important for what I’m leading into.

Today, I wanted to talk about surgery #5. When it would happen, if it would happen. Dr. Karnitis and I are on different pages with what is best but I am going to go his route first. (He is very insistent that we are doing no more surgery but we may have to resort to that) We have decided to go with pain medication to help me be more comfortable. I can’t tell you all how hard the last few weeks have been. I can’t function. I can barely function at work but have to pretend I can do things because my bosses have been more than understanding throughout this entire process. We have also decided that I am going to do 3 months of Lupron to quiet my system so the inflammation won’t cause as much pain. The down side is the amount of hot flashes but if the medication works then I’ll take hot flashes over unbearable pain any day.  Also, it is his belief that my tube is officially non-functioning. He says with the IUI we attempted last month and the fertility meds we’ve tried I should have been able to conceive but if my tube isn’t working that explains alot. Which means there’s only one way to have a baby…. IVF. If/When we go down this road we have already decided to freeze some embryos that way we know we’ll be able to have more than one child. It won’t be easy and it will be expensive but I won’t give up.

So here’s what I need from my friends and family. I need you to pray, send positive vibes, whatever it is you do to the universe or the deity in which you believe. I need this Lupron shot more than ever and IF insurance does not cover it I will continue to be in pain. By the way EVERYONE needs to write their Senator about this healthcare bill because women like me will loose their insurance because I have several pre-existing conditions. Anyway, if we have to pay out of pocket for Lupron (which would be a 3 month dosage) it would be $4,030.99. Yes, you read that right. Over $4,000…which if I haven’t mentioned I don’t have. So we have some decisions to make. I am hoping my insurance company will pay for this medication, I can be comfortable and we can make a serious plan of action. I know two women who have been in my shoes and I read the blogs and follow other infertile women on social media. They give me hope. They make me cry along with them. I know their struggle. I feel their yearning to become a mother. Just last night I was in so much pain I was crying and telling Russell it isn’t fair that he has a partner who can’t conceive a baby. A partner who is a failure. I feel guilt. I feel lost. He has never waivered when it comes to our journey. He says he wouldn’t choose anyone else to be his wife and that no matter what we have each other.  His reassurance gives me peace of mind and lets me know I just need to take things one day at a time.

Well there’s your endo update! There are  few blogs I didn’t share on social media so if you want to check those out they are down below!!

Until Next Time

xoxoxo

Misconceptions about being Infertile — May 23, 2017

Misconceptions about being Infertile

There are many misconceptions about having infertility that I am not quite sure people are aware of. I’ll be going through some of them because they have affected me in more ways than one. Here goes my list of misconceptions.

  1. All people with infertility will be resentful of those who are able to get pregnant. This isn’t true…not fully anyway. When I was first diagnosed (and everyone knew this) it was very hard for me to process what I couldn’t have. I basically had tunnel vision and was only focusing on myself and a year and half later I realize that wasn’t the right thing to do. However, I learned a lot from last year. One major lesson was that I could be happy for my family and friends that are pregnant because I know that’s where they are at this time in their lives. They are getting married and planning on expanding their families. I am not upset or angry but actually the opposite. I am extremely happy for all my friends and family who have been able to get pregnant and have babies. Shout out to my sister who is pregnant with her first child! I am very excited for her because I know this is something she’s wanted for quite a while! I am very happy to love on this sweet new addition to our family and become an aunt again!!!
  2. I have a HUGE support system when in reality I have a handful of people who truly care. This isn’t a post to shame people but to be honest. There are very few people who’ve reached out to find out what’s going on. This journey has been very tough and unless your my husband, my mom, my dad or someone super close to me, you probably don’t know every single detail. This is because when something like this happens a lot of people don’t know what endometriosis is and can’t understand why plans are cancelled or why I’m just not feeling up to getting out for coffee or lunch. It’s not your fault, I just need lots of rest in order to feel like I can function. Plus, flare up’s from endometriosis are no joke. They last for any length of time and unless you have a serious game plan of how to get rid of them, you just have to wait it out. Shout out to my friends and family who have been my side, come to visit me in the hospital, and called or texted to check up on me. You all are the people I know I will have by my side for a long time to come.
  3. I’m not always sad. There are days that I have that are discouraging or not exactly the result I was hoping for but I pick myself back up and keep going. I know I’ve said something similar in a previous post but I allow myself time to mourn or wallow in pity. I do this because if I don’t my emotions will build up leading to a disaster. Sometimes I feel like when we go two steps forward we go one step back. I knew that going into this that it wouldn’t be easy. I knew this would be all consuming and that’s something I am still trying to manage. Don’t get me wrong there are still some days when I just want to lay in bed and wonder what the future is going to bring but I won’t do that. I pick myself up, get ready for the day and remain hopeful of what the universe has in store for us.
  4. I think this is the biggest misconception and annoyance for anyone going through infertility issues. “How to get pregnant advice”. This could not be more frustrating for me. I have people say “you need to just get drunk one night and do it…that’s how people get pregnant, you’re putting too much pressure on yourselves. But I don’t know much about what you’re situation is so that’s just my advice.” First of all, this is not only offensive but unnecessary. Do you honestly think if it were that easy I’d be going to reproductive endocronologist who has an extensive background in helping couples with fertility issues get pregnant? No, I wouldn’t. I am seeing this doctor because I have a disease that prevents women like myself from getting pregnant. It would be so easy for me to brush it off and act like that’s what I want to hear because that person thinks they’re being helpful but in reality they’re just making things worse. Telling me to relax and not stress is much easier said than done. When you have to seek these opinions of professionals because you don’t have any other options there is going to stress involved. I just think people should keep their how-to-get-pregnant-advice to themselves because they have no idea how much hurt they can cause a woman with infertility; especially if the “advice” was unsolicited.

That’s just my late night brain dump. I am always writing about random topics… mostly that tie into what’s going on in our world with fighting this disease. Please continue to send positive vibes and thoughts our way as we are getting closer and closer to one day bringing baby Young into the world.

xoxo

Plans That Do Not Go According to Plan — May 19, 2017

Plans That Do Not Go According to Plan

Do you ever just map out how your life or something really important in your life is going to go and then get really disappointed when things just don’t work out? Well that’s me; sting here at 1am with some very intense pain in my lower back and lower abdomen. I can never sleep so why not write a bit and try to calm down a bit to see if I can sleep? At least its thunderstorming so I can listen to that and be in peace.

Over the last year and half I’ve had plans of how everything was going to go. After surgery one in February 2016 I had a goal that I was going to get healthy and the endometriosis wouldn’t grow back (had I known then what I know now I would have just discarded all my plans). But as we all know March comes and so does surgery number 2. After March I decided I wasn’t going to focus on the negative and see how this “experience” would help me grow emotionally, mentally and physically. Well that didn’t work because I became very bitter and angry. Angry at the universe for giving me a disease that has no cure, no medication to control it and no way of knowing how bad it really its or how much of it has grown back without surgery. I cut myself off from my friends and even my family because all I wanted to do was be alone. I wanted to sit and think and really open my soul up to the universe and just try to figure out how to get out of the rut I was in. So I focused on our wedding, which was the best distraction I could have asked for. Planning our wedding was the most fun I’ve ever had! When August rolled around I had so much going on, I was finishing my year at Miss Captivating, in the final 8 weeks until we got married and then surgery 3 was scheduled unexpectedly. By this point I’d gained 25 pounds and just didn’t feel like myself. I had given up on looking good for the pageant because at that point there was no hiding the weight gain but I wanted to be present for that event and kind of shut my brain off that weekend. After surgery 3 we were in the clear (or so I thought). The final stages of putting our wedding together were going perfectly. Everything had been done and there were just a few last minute things to get for our reception. And the rest of the year went so well. We had consulted with my OB/GYN but for 3 months nothing. As newlyweds I knew that trying wasn’t going to be easy. Then out of nowhere surgery 4. The big one. The one that for me was the hardest. I think my body was in so much shock from the previous surgeries that it really had no recovery time; in 12 months I’d had 4 surgeries. In January I got really discouraged and we kept trying until this spring when we went to see Dr. K. at KHN. Ever since we’ve been going through this regimen and I’m hoping it works.

Last month was a true example of how things didn’t go according to plan. Last month I had my first round of Clomid, followed by a trigger shot and timed intercourse. And let me tell you that’s really awkward to hand your husband a schedule and say these are the days we need to try for a baby. We did exactly what the doctor and the morning I took a test I couldn’t look at it. I peed on the stick like you always do and then put it in the box. When Russell and I looked at the results, which was a negative, I broke. I never knew I wanted something so badly until that moment. At that moment I went back to bed and just cried. I realized then that this entire process is about not having anything go according to plan. I have to give up all my expectations because if I don’t I will continually be let down. This entire time I’ve had a plan but at some point I have to give everything I have to the universe and say ” Okay. I give my everything to you. You will bless us with a baby when you feel the time is right.” I ask the Goddess of Fertility for her help because I know she is looking over us.

Throughout this process I’ve had to learn how to love and let go. Let go of the baggage I’ve been carrying around. Let go of the negativity. Let go of this idea that having a baby later in life is a bad thing. Let go of the judgments I’ve placed upon myself. Let go of the what if’s. There are so many things that don’t go accordingly to plan but if having a baby means not sticking to any agenda, I’ll take it. We’re patiently waiting for our sweet bun to come to us. Until then, I’ll just keep writing and hoping we are making progress.

xoxo

Mothers Day 2017 — May 11, 2017

Mothers Day 2017

Please stop asking if I’ll be okay this Mother’s Day. Yes I understand the significance of the day and how I’m struggling to conceive myself. However, I am still able to spend mother’s day with my three awesome doggies and husband… after all I did become a fur-mama almost 9 years ago when I surprised Russell with Lena!!! Not to mention I get to celebrate my WONDERFUL, AMAZING, puts-up with all my shenanigans mother!

For me mother’s day isn’t about dwelling on what I don’t have but rather being thankful for what I do have. I have an awesome mom (and step-mom) that I am blessed to walk through life with. I think of the numerous times a day I call her to tell her the most random things. LOL. But for me Mother’s Day is about celebrating all mothers, including those who may not have children on earth but have children watching over them. You, sweet sister are still a mother, no matter what anyone else says. I believe this holiday will afford you the blessings and light you may have been looking for.

While our journey hasn’t been easy or as long as some other people I know, I do know that we are on the right track. Yes, I do have down days where I can’t seem to think my way out of what is going on; so I sit and let my emotions surround me and with every breath I take I feel how deeply my emotions are effecting me. Once some time has passed, I am usually able to get through anything. Which is why I don’t want anyone else asking if I’m going to be okay on Sunday. I want people to celebrate the amounts of achievements we’ve had this year. I want to celebrate being a strong woman, one in which is putting her body through the ringer in order to conceive a baby. I want people to understand that I have stage four endometriosis but that I won’t let it define me.

Now, please understand that I feel for any woman who has lost a child. I can’t imagine what that feels like. My hope for you this Mother’s Day is to remember them how they were, what they would look like and what their voice would sound like if they were to call you ‘Mom’. I know it sounds painful but in sad moments we can find joy. So find joy on Mother’s Day. Smile. Laugh. Cry happy tears. Be with your loved ones and know that they understand what you are going through. Life is forever changed when we lose someone we love. Milestone holidays become big days and days we often run from. Let’s not run from our fears but instead face them with every fiber of our being. Because at the end of the day in order to get passed a challenge we must go through it. We can not go through a challenge if we are not ready. Each woman is going to be different. Each woman may not agree with what I’ve said.

I don’t want to be asked if I’ll be okay for major holidays just because others have children and I don’t (right now). Mother’s Day is about celebration for me; fun memories; loving times. I hope when the day arises and you may not be feeling like getting out of bed, you remember the purpose of your being; to stay strong even when you feel like giving up.

Until Next Time,

xoxox

Endometriosis Awareness Month — March 21, 2017

Endometriosis Awareness Month

All month long I’ve tried to think of what to write. For some reason the words are there but I can’t seem to formulate the right sentences to create a coherent blog post. Here’s my best attempt to put everything into words 🙂

March is endometriosis awareness month. I’ve been reading stories all month from women sharing their stories, their fears, their goals, and what they hope they can accomplish by sharing what they’ve been through. The stories I’ve read all vary from women who have just been diagnosed to women who have known they’ve had this disease for a few years or more. Then I read one where a husband shared his point of view on what it’s like to take care of someone with endo. The story was awe inspiring. For me it touched a special place in my heart. It made me feel vulnerable in a way that I started crying. His words were so sweet and kind. He was gentle when he described the way he cares for his wife daily. I think that’s something that most people who don’t have this disease realize. When a man decides to marry a woman with this disease, he is marrying someone who is going to be tired, sick, and have flare up’s so bad nothing but an ER visit can take away the pain. Naturally, when I was reading this blog post I thought of Russell. I think of every day when I have to tell him my back hurts, or the cramps are more than cramps. Ironically its been 365 days since my 2nd surgery… ya know the one where they had no choice but to take out my left tube and ovary. It was that hospital stay that I asked him “Are you sure you want to marry me? What if I can’t give you children?” It was in that moment of imperfection, laying in a hospital bed, so drugged and sick that he told me he loves me for everything I am and if we can’t have kids then we have each other. Ladies, the one thing I know about Russell is how much he wants a family. His desire to have a family is strong. When a man marries a woman with endometriosis he marries the idea that children may not come. I thank the universe for Russell every day. My husband is an endo husband. He takes care of me. He tries to make my pain go away and comfort me when I’m at my worst. If you or someone you know has an endo husband, hug them tight. They are hard people to find. They are like finding a needle in a haystack. Endometriosis can put stress on a couple. It can make you both for guilty. Us women feel guilty for our spouses because we are keeping them from a healthier person. At least that’s one of my biggest guilty feelings. I tell Russell all the time that he could have been with anyone else. The guilt of being sick all the time creeps in and makes me feel awful. I think that’s why I needed to read a story about a couple going through endometriosis, and the article being written by the husband was on point. He committed to being the best endo-husband he could be. He told the readers of how many heating pads they have and how it doesn’t take him long to heat them up for his wife when she has a flare up. He also talked about how he knows when to step in and tell his wife to rest and when he knows she can push herself. An endo-husband is a caretaker and without them us wives would be lost.

I want to thank my endo-husband. Thank you for baring with me during the last year. I know four surgeries was tough. Four surgeries were stressful emotionally, physically draining and mentally challenging. Russell has been there for the darkest days of my existence. He has seen my biggest fears with endometriosis. He attends IVF appointments to educate himself further. I also am thankful for my endo-husband because every day he tells me we are going to be parents and he’ll see me grow through motherhood. I’m thankful every second of the day for my awesome husband. I am thankful for the support, advice and love he has given to me in the last year.

Having endometriosis is debilitating, it’s frustrating but in the end endo is apart of me. I have learned and grown so much this last year and I hope that if you are following this journey I have taught you a little something about endometriosis that you didn’t know before.

Happy Endometriosis Awareness month March!!!!

How Endometriosis Changes You — February 14, 2017

How Endometriosis Changes You

Every young girl imagines how her future is going to be. She is going to meet a guy (whether its their high or college sweetheart), fall in love, get married and have a family. I know that was me. I also had a super huge wedding planned in a church but we all know that changed (and definitely for the better!).

One year ago I was diagnosed with endometriosis. I had had some really bad periods but like I’ve said in previous blogs I just thought it was normal and kept going. Then slowly but surely it became harder and harder to do things, simple things, like working out and walking around the block. That’s when I went to see my OB and we scheduled my first laprascopy. The rest is history. This past year has changed everything. I have had to put my life on hold to make sure I am healthy enough to do activities. What you don’t know is that I was hurting on my honeymoon in Hawaii. I didn’t tell Russell because those 16 days were the most magical and I was damn sure not going to let that get in the way. But here’s how endometriosis has really changed me. I don’t see anyone. I don’t go to lunch. I don’t go shopping. I don’t because I can’t. I can barely get myself out of bed in the morning without feeling some kind of pain. If you don’t have this disease it’s very hard to explain what the pain is like to others who don’t have it. It’s hard to explain that sitting on my couch with my hot hugs heating pad and resting is all I can do right now. I can go out occasionally for date night but I want to do those things because it helps strengthen my marriage. Also, Russell has been there through this entire journey and he has seen first hand what I am going through, so he’s really the only one I can count on to be there 100% of the time (besides my parents and siblings).

Endometriosis has taught me that you need to be thankful if you can get pregnant easily because for those of us that can’t, it’s more than challenging. Endometriosis challenges your mental state, your emotional state and your physical strength. I have had moments where I thought I’d never come out of being sad, angry and depressed. I didn’t think I’d ever be able to be around babies without crying. But what endometriosis has given me is the strength to talk about my feelings. I started this blog because I wanted people to know what websites don’t tell you. The amount of weight I gained and lost and gained again because of the hormones was awful. Endometriosis has taught me that I’m a fighter. Marcano’s fight to achieve a goal and I even though my last name is now Young, the Marcano in me keeps me fighting for a baby.

As I write this blog now I am staring at the paperwork that will get us started on our IVF Journey next Monday. This new chapter is daunting. The paper work seems like a mountain to climb. I am scared. I am nervous. I am anxious. I am feeling so many emotions that it’s hard to write them down. What endometriosis has taught me most is patience and faith. I have to have faith in order for this to work. I also have to have the patience to get from one appointment to another.

Endometriosis has changed me. Endometriosis has given me a voice I never thought I’d have. Endometriosis is scary and at times it seems impossible to get through, however, with Russell by my side I know I can do all things I set my mind to. I am hopeful that 2017 will bring a pregnancy and healthy baby into the world.

I appreciate all of you how continue to follow my journey and keep up with what is going on. I appreciate you more than you know. Your positive thoughts, words of encouragement and thoughtfulness mean more to me than you’ll ever know!

Until next time,

xoxox

Endometriosis Awareness Month — March 24, 2016

Endometriosis Awareness Month

March just so happens to be endometriosis awareness month. This blog is dedicated to my journey thus far and by the end I hope to give you a better understanding of what endometriosis is.

Endometriosis is difficult to define. A lot of people don’t know what it is and a dear friend of mine sent me picture of what endometriosis is like. Here is what is says: “In the body of a woman with endometriosis, the lining of the uterus that is shed every month during is unable to be shed, so it’s reabsorbed by the body. It then sticks to other organs and grows like weeds in a garden, wrapping around and over organs. Endometriosis creates chronic pain, sometimes infertility, digestive and bowel malfunctions and chronic fatigue. There is no known cure.”

This is a very accurate definition for what endometriosis is and does. I was introduced to what endometriosis is because my sister has the same condition. Since we have the same DNA it makes sense that we would both have the same condition. If I’m not mistaken she has stage 3 endo. She, too, has had several surgeries to help remove scar tissue that was causing her pain. Thankfully she hasn’t needed to have any surgeries in the past 6 months.

I realized something was wrong because my periods were like hell, well worse. My cramps were so bad I would become nauseas and couldn’t eat. My back hurt so badly from all the pressure. Midol wouldn’t touch the pain and the only way to get rid of the pain was to sleep. After an ER visit because I couldn’t handle the pain, I went to my OB/GYN to then discover I have endometriosis. February 2, 2016 I had my first surgery. My tissue was removed but not completely. The surgery was supposed to fix the pain but when I went in for my check up I had two options: have another surgery, more extensive with a hospital stay or have a hysterectomy. Obviously I chose option 1. 30 days after surgery I had surgery number 2. This time a robot was used to see exactly what was going on. My bowels, uterus and ovaries were all enveloped in scar tissue. My left ovary and fallopian tube were so badly damaged that they had to be removed. I woke up from surgery in a lot of pain. I was given a shot to stop my period for 3 months so I could heal and not have to worry about being in more pain. I will scars all across my stomach because of surgery. I have a 25% chance of having a baby on my own and I hope and pray that this will be all I need.

Here’s what the doctors don’t tell you about endometriosis. The shot that I was given stopped all my parts from functioning so now at 26 I am “menopausal” because I’m not ovulating. I get hot flashes all the time, I can’t sleep and my incisions hurt…bad. (Once the shot wears off I wont be menopausal anymore) I also feel guilt and shame over my condition. Endometriosis isn’t just affecting me, it’s affecting Russell. There are days that I am so sad because I want to give him a family. We have always dreamed of having 4-5 kids. I see people and their kids and wonder if I’ll be able to have that. I hope and pray that when we get married we’ll be able to have a baby the natural way. I know that having to see an infertility specialist is something we’ll have to do if I can’t get pregnant. I am beyond thankful for Russell. There have been times when I cry to him, apologizing for my condition. Each time he says we are in this together and no matter what his love for me doesn’t change. He loves me, endometriosis and all. He takes care of me, makes me dinner, helps me get dressed when the pain is so bad I can’t bend over. He is always there for me. He goes above and beyond all expectations I had for my soon to be husband. But he has always taken care of me. He gives me hope. He is my light in this dark tunnel. He loves me unconditionally and I couldn’t ask for better partner in life.

I had my checkup this past Monday with my OB/GYN and he says everything is healing nicely. He was frank with me and my entire life was put into perspective. He said I am in the top 5% of the worst cases of endo he has seen in his career and I am the only one who has been able to keep my uterus and right tube and ovary. There are plenty of days that I feel alone and wonder why this happening. I often wonder if there was something I could have done to prevent this. I hope one day there is a cure.

Please say a prayer for all the women who have this condition. Below is a link to an article from Huffington Post about what women with endometriosis want you to know.

http://www.huffingtonpost.com/entry/endometriosis-what-to-know_us_56e1f8eae4b065e2e3d567ac

XoXo

How are you feeling? — March 7, 2016

How are you feeling?

Do you ever just have something happen to you and you look back and see what you could have done differently to prevent it?

Well that’s been me for the last few days. To say I’m in some pain would be an understatement. I was finally able to change my bandages and look at my wounds for the first time. It’s definitely not what I thought it was going to look like. I thought since they went in laparoscopically my incisions wouldn’t be so bad, but I was wrong. Two of my incisions are quite large and my belly button has two more incisions with another small incision close to my left hip. The pain is constantly throbbing and my back almost always hurts.

Here is what they did to my body: Going into surgery I knew that my uterus was going to be reconstructed because it was somewhat damaged. However, my OB found that both my ovaries were conjoined, which were attached to my uterus, and my uterus was attached to my bowels. So basically all my parts were frozen together, giving me all these crazy symptoms when I was on my normal period. During surgery my left ovary and fallopian tube were so enveloped in scar tissue that they were damaged beyond repair. Once they took out my left ovary and tube it was time to take care of my right one. My right one wasn’t perfect, it had some damage that they were able to fix but in the end I am left with half of my right ovary and a fully functioning tube. (YAY) Of course after that was done the rest of the endometriosis was removed. From what I understand there was a lot of damage done an it was very hard to fix (surgery was 4 hours)but they got the job done which is all I wanted.

The main question I keep getting asked is this: How are you feeling? Well honestly, I have no idea. I’m out of work for two weeks if not three, I can’t do much of anything because of the amount of pain I’m in, and we only have a 25% chance of conceiving a baby the natural way. So the answer to “how are you doing?” is not so great. I feel like I have to say I’m fine or that things are going well because people don’t want to hear about the awful stress my body and my emotions are going through. There are plenty of times in the hospital that I cried because I don’t have all my lady parts. I cried for Russell because I feel like he is marrying someone he is always going to have care of. I wonder if I would have taken better care of myself if this could have been avoided. I wonder how I got so lucky by having someone love me as unconditionally as Russell. He is always willing to take care of me even on days when he isn’t feeling well or he’s having an off day. Sometimes I feel like he deserves to be with someone who is healthy and can do everything he wants to do. But I’ve come to realize that’s not life. Life is growing old with someone, taking care of them because you love them, being selfless in a time when you probably deserve to be selfish.

Finding out that I have stage 5 (extensive) endometriosis it felt like my world was falling apart. I felt like I was being kicked in the gut. Each day brings a new struggle. Each day a new emotion arises that I have to face head on. Today I am feeling overly emotional because I want a baby. I want to give Russell a family. I want to feel what it’s like to give birth to a baby. I want to be up all night feeding and changing diapers. But what people don’t understand is that this disease can rip those hopes and dreams away from a woman in a heartbeat. I want to be one the women who can beat this. I wan to be able to say I have “x” amount of children. It may take a while to get there but I have to keep faith that everything is going to work out. My plan for life has already been mapped and I just have to keep following it.

xoxo