Today was my 2 week post op appointment and I must say that I'm really glad that I made the decision that I did. I was all set to just hear about the damage to the ovaries that was caused by the scar tissue and the new endo growth but didn't expect to hear what I did hear. The doctor is excited as to how well I actually do feel. For the most part the pain is gone, my incisions aren't healing the way she would live and I'm still having some minor cramping in my back and she says that that will go away in a few months. My system is still adjusting and healing from the surgery so the mild cramping is to be expected, I really thought I was done with all that crap, however, if I only have to deal with it a few more months I think I'll live! Thats way better than living the next 10-15 years with this shit!
In 2012 when she sent me to see a fertility doctor she made a statement that she thought the endo grown inside my uterus muscle and it was confirmed with the pathology of everything. Adenomyosis is the medical term and this causes a whole other set of problems for fertility. This makes having babies that much more difficult because the uterus just isn't strong enough to handle carrying a baby for 9 months. She fully believes that this is where the majority of my pain has always come from. Where I've had mild to moderate pain at different times of the month, I would always have severe pain during my cycles and regardless of the different birth control options, stopping the cycles never happened and estrogen just increased the problems with the Adenomyosis causing more pain and more damage over time. Patients that have the Adenomyosis are encouraged to have a family early if they plan on it because there is no stopping the damage once it starts and the longer you wait, the worse your chance is that you will actually have a succesful pregnancy.
She was really surprised and told me that she felt bad about the ovaries being as damaged as they were. Its not her fault but she said that the multiple surgeries had caused the scar tissue. My thinking, one way or another they were going to get damaged. If not from the scar tissue than by the massive amounts of cysts that developed all the time and the endo growth that just wouldn't go away, scar tissue was the least of my worries! One thing I wasn't expecting, my ovaries were twice the size that they should have been and were just a tad bigger than my uterus, although she did say this was somewhat common in women that have PCOS.
The one thing that I've always been aware of is that there was a good chance that at some point in my journey with the endo and PCOS there was a chance for cancer to develop and throughout this journey I've had my blood tested just as often as I've had ultrasounds done. And although she started her statement off with there is no need to worry it wasn't cancerous, hearing that there was a tumor on my ovary was the scariest thing I've ever heard. I can't imagine what its like to be told you have cancer and I pray to God that I never have to go through that but my heart really sank when she told me that there was a tumor present. Dealing with the endo and PCOS and everything that comes with those 2 horrible diseases still didn't make it easy to hear. I fully believe that the Good Lord lead me down the right path because I could have faced cancer in the future. I may be a little over dramatic right now but its never easy to hear that you had a tumor, regardless of the test results, its not a feeling I ever want to have again.
My hormones are going to be adjusted in a few weeks. I'm going to finish the pills that I have, simply because they were so expensive and I'm not going to waste the money, then I'm going to switch to a patch with a lower dose and see if I can finally get some sleep! She wasn't so worried about the hot flashes because I haven't had so many, but my not being able to sleep was a huge concern. Hopefully the switch in a few weeks will be successful and I'll be able to get a good nights sleep without having to take sleeping pills!!
The next few months are going to be my real test. Just trying to get everything adjusted and starting to actually feel normal (if there is such a thing) will be a huge task. There are still going to be days that I have my little meltdowns, but hopefully they will be few and far between. I WANT A NORMAL LIFE!!!
Wednesday, April 17, 2013
Friday, April 12, 2013
Welcome to Hell
This post is taking me longer to post than I thought it would. I seriously thought I would have the post op update the very next day! Ha, how wrong was I!!
I'll start by saying, I'm very glad that I didn't back out of the surgery and a lot of questions were answered after the surgery. The last two weeks before the surgery were very hard on me. I had meltdown after meltdown. Most of the time I kept those to myself, no one wants to hear me whine and complain about the same things over and over again. Over the last few years I have mastered the art of plastering on a smile and carrying on when all I want to do is cry and fall apart. A few weeks prior to my surgery I told my grandmother that mother nature wouldn't let me get through this without torturing me one more time and sadly I got my last period on the Monday before my surgery. The bright light in this was knowing it was my last period ever but boy was it ever painful. Seems like my body knew what I was getting ready to do and it decided that it was going to wreck havoc on me for the next 2 days. Oh well! The night before my surgery I was on the way to the pharmacy to get my bowel prep when the doctors office called and said that they might have to reschedule my surgery. Oh shit is the first thing that went through my mind. The doctors son was really sick and they were afraid that they were going to have to admit him to the hospital because he was only getting worse. In my mind, if the surgery was going to have to be rescheduled, then I wasn't going to have it done, it was a sign that it wasn't meant to be. I patiently waited by the phone the next morning to get the call to go to the hospital. I told the nurse the night before I needed to know before 9 am because that was when I would need to leave for the hospital being as the hospital is over an hour away and checkin was 10:30. I got the call that everything was good to go at 8:45 and sadly I was late for surgery! I was in an absolute panic trying to get to the hospital in time. Checkin time was 10:30 and I checked in at 10:38. I was so afraid that they were going to tell me that I was past the time and they cancelled my surgery, luckily they didn't pay no attention to me being 8 minutes late.
I get in the pre op room and things moved rather quickly once I got in there. I got my iv, which was extremely painful, obviously I need to drink more throughout the day, and then I saw the guy that was going to knock me out and within 10 minutes of seeing him I was being wheeled down the hall to the elevators to the 3rd floor where my life would change forever. I talked to the doctor before they sedated me and she told me not to worry and once again went over everything that would happen and then she said she would see me the next day and that I was going to take a nice long nap. During my pre op appointment with her the week before she said the surgery would take no longer than 2 hours, however, knowing my body, it took almost 3 hours to get everything done. I remember laying in the recovery area and hearing someone say that they had to cut her open and freaking out because all I could think was great, now I'll be out of work for 6-8 weeks instead of 3-4 weeks. When I became more alert I asked the lady sitting with me and she said no that wasn't me they cut open and that I had four incisions to add to my already large collection of scars on my tummy. During this time I remember telling her 3 different times that I needed to pee extremely bad and being told 3 times that I could go because I had a catheter in, each time she sounded like she was getting more frustrated with me! Come on lady, I just come out of the or and things don't seem to register as quickly as you might think!! Calm down already! The other thing I remember during this time is being woken up every few minutes because I wasn't breathing like I should have been. I would dose off and the nurse would yell at me to wake up and take big deep breathes. This lead to a night of no sleep for me. Now its time to get to the room I'll spend the next 24 hours in.
I still wasn't all that alert when they wheeled me to my hospital room but there were 2 things that stood out from everything else. After they wheeled me off the elevator and down the hall I pass a big huge window, surely they didn't just roll me past the newborn area, I must be dreaming. Then at the end of the hall I see a poster of a pregnant lady holding her belly and it said something about a special delivery, holy shit, they stuck me on the maternity floor. What in the hell were they thinking. Here I am, 30 years old, no kids to my name and I just had a complete hysterectomy and they are putting me in a room on the materinty floor. When I said something to the guy rolling me to my room he said it was either this floor or the pediatric floor and since my doctor had another patient on this floor, thats where they stuck me. This was the first time I cried after my surgery. The nurses kept trying to talk to me and all I would do is look away and kept asking for my grandmother who was still sitting in the OR waiting room waiting to see me. The tears just kept coming. My grandmother finally showed up and I started to settle down after a bit and I finally came to completely. I asked my grandmother if she talked to the doctor and all she would say is that it took longer than expected because my ovaries were stuck. Stuck? What do you mean stuck? She said she didn't really know because the doctor just told her they were stuck. Well, that would be the first question I ask the doctor in the morning. Chris, Mary and Declan came to visit and brought me some soup and I was so excited! All the nurse would give me was jello and crackers, so to get some real food I was stoked! They stayed for a bit and left and then I was left by myself for the next 12 hours, except for the nurses coming in and out. I really like my overnight nurse, she talked to me throughout the night because I couldn't sleep. I find it really surprising that her first concert was just a few years ago and it was a Metallica concert, oh I forgot, she's in her 50's and has grandkids!!! Grandma knows how to have time! My biggest problem in sleeping is that everytime I dosed off to sleep, I felt like I would stop breathing. This literally happened every time I fell asleep. I don't think I slept until around 6 and then the nurse came in at 8 to give me my meds, so I probably got maybe 2 hours of sleep.
The doctor came to visit around 9 and told me that there was a lot of scar tissue and a lot of new lesions from the endo. Not really that surprising. I still was very interested in learning about the ovary situation and this is what she had to say, my left ovary was covered with scar tissue and lesions and was stuck to my bowels and my right ovary was covered with scar tissue and lesions and stuck to my pelvic wall. She said I was in more pain because of the way she had to remove everything with the robot. Luckily she was able to do it all without cutting me open but she did say she came awfully close to pulling the robot out and cutting me open to get the ovaries out, they didn't seem to want to come out. The damage was done by the previous surgeries had basically ruined my ovaries. I learned a few days later when I was with my grandmother that the doctor told her that with the shape my ovaries were in when she went in there, it was highly unlikely that I would ever have had a successful conception. I'll know more when I go to my post op appointment this Wednesday but she said that I made the best decision that I could have and that she wasn't surprised that I finally asked for pain pills back in January. She's more surprised that I lasted as long as I did without the pain pills. Can't wait to see those pictures next week!
This past week being home has been a journey to say the least. Christina came to stay for 2 days and I'm so very glad that she did. I was so scared about being alone for a bit and to have her here for me means more than she'll ever know. Not only could I not do anything, but she was just there if I needed some to talk to. She left Saturday morning to get back to her family and Kristin came down to spend the day with me cause I just wasn't ready to be alone just yet. I didn't sleep much the first few days I was home. I would stay up till 10 or later and then wake up early in the morning and then take a nap, I was probably getting around 8 hours with the nap included. I don't think I really slept well till Monday or Tuesday. Monday was my first venture out of the house. I spent a few hours at my grandparents, I needed to see my dogs. I think I got over there around 2 and was ready to come home by 6 and I was completely exhausted. I went out today and didn't stay long but thats a whole other story!
When I woke up after surgery they put a hormone patch on me and told me it would last a week and then I would start the pills the doctor gave me. Well I started the pills yesterday and today I had a complete meltdown. My grandmother was lecturing me on learning my body and figuring out how to tell when this happens, hello, my body just went through a dramatic change and I don't know whats going on! Its going to take me longer than a week to figure out when these meltdowns are coming and how to handle them. I cried and cried for hours and felt so empty on the inside. I know the surgery was the best decision for me but learning how to cope with the emotional outbursts is going to take me a bit. Everyone deals with their surgery and after effects differently and hopefully I'll get mine under control and hopefully its somewhat under control when I go back to work, because I don't know if my mastering art of plastering a smile on my face and carrying on will be enough, I'm afraid I'll have a meltdown at work.
I want to thank Christina, Kristin, Hollie (she's coming down tomorrow), my grandmother and all their families for being there for me in the days leading up to and following my surgery. I don't think I could have made the progress that I have if you guys weren't in my corner cheering me on every step of the way. I also want to thank my friends and family for standing by me and my decision and all the prayers that you guys prayed. I may not say enough but I love each and every one of you guys and appreciate the time you took out of your schedules to say a prayer for me. These next few months are going to be rather hard I imagine as I adjust to life on fake hormones. I hope I don't piss anyone off in the process but please bare with me as I deal with all the changes I'm going through. Here's hoping that I come out on the other side a happier person!
I'll start by saying, I'm very glad that I didn't back out of the surgery and a lot of questions were answered after the surgery. The last two weeks before the surgery were very hard on me. I had meltdown after meltdown. Most of the time I kept those to myself, no one wants to hear me whine and complain about the same things over and over again. Over the last few years I have mastered the art of plastering on a smile and carrying on when all I want to do is cry and fall apart. A few weeks prior to my surgery I told my grandmother that mother nature wouldn't let me get through this without torturing me one more time and sadly I got my last period on the Monday before my surgery. The bright light in this was knowing it was my last period ever but boy was it ever painful. Seems like my body knew what I was getting ready to do and it decided that it was going to wreck havoc on me for the next 2 days. Oh well! The night before my surgery I was on the way to the pharmacy to get my bowel prep when the doctors office called and said that they might have to reschedule my surgery. Oh shit is the first thing that went through my mind. The doctors son was really sick and they were afraid that they were going to have to admit him to the hospital because he was only getting worse. In my mind, if the surgery was going to have to be rescheduled, then I wasn't going to have it done, it was a sign that it wasn't meant to be. I patiently waited by the phone the next morning to get the call to go to the hospital. I told the nurse the night before I needed to know before 9 am because that was when I would need to leave for the hospital being as the hospital is over an hour away and checkin was 10:30. I got the call that everything was good to go at 8:45 and sadly I was late for surgery! I was in an absolute panic trying to get to the hospital in time. Checkin time was 10:30 and I checked in at 10:38. I was so afraid that they were going to tell me that I was past the time and they cancelled my surgery, luckily they didn't pay no attention to me being 8 minutes late.
I get in the pre op room and things moved rather quickly once I got in there. I got my iv, which was extremely painful, obviously I need to drink more throughout the day, and then I saw the guy that was going to knock me out and within 10 minutes of seeing him I was being wheeled down the hall to the elevators to the 3rd floor where my life would change forever. I talked to the doctor before they sedated me and she told me not to worry and once again went over everything that would happen and then she said she would see me the next day and that I was going to take a nice long nap. During my pre op appointment with her the week before she said the surgery would take no longer than 2 hours, however, knowing my body, it took almost 3 hours to get everything done. I remember laying in the recovery area and hearing someone say that they had to cut her open and freaking out because all I could think was great, now I'll be out of work for 6-8 weeks instead of 3-4 weeks. When I became more alert I asked the lady sitting with me and she said no that wasn't me they cut open and that I had four incisions to add to my already large collection of scars on my tummy. During this time I remember telling her 3 different times that I needed to pee extremely bad and being told 3 times that I could go because I had a catheter in, each time she sounded like she was getting more frustrated with me! Come on lady, I just come out of the or and things don't seem to register as quickly as you might think!! Calm down already! The other thing I remember during this time is being woken up every few minutes because I wasn't breathing like I should have been. I would dose off and the nurse would yell at me to wake up and take big deep breathes. This lead to a night of no sleep for me. Now its time to get to the room I'll spend the next 24 hours in.
I still wasn't all that alert when they wheeled me to my hospital room but there were 2 things that stood out from everything else. After they wheeled me off the elevator and down the hall I pass a big huge window, surely they didn't just roll me past the newborn area, I must be dreaming. Then at the end of the hall I see a poster of a pregnant lady holding her belly and it said something about a special delivery, holy shit, they stuck me on the maternity floor. What in the hell were they thinking. Here I am, 30 years old, no kids to my name and I just had a complete hysterectomy and they are putting me in a room on the materinty floor. When I said something to the guy rolling me to my room he said it was either this floor or the pediatric floor and since my doctor had another patient on this floor, thats where they stuck me. This was the first time I cried after my surgery. The nurses kept trying to talk to me and all I would do is look away and kept asking for my grandmother who was still sitting in the OR waiting room waiting to see me. The tears just kept coming. My grandmother finally showed up and I started to settle down after a bit and I finally came to completely. I asked my grandmother if she talked to the doctor and all she would say is that it took longer than expected because my ovaries were stuck. Stuck? What do you mean stuck? She said she didn't really know because the doctor just told her they were stuck. Well, that would be the first question I ask the doctor in the morning. Chris, Mary and Declan came to visit and brought me some soup and I was so excited! All the nurse would give me was jello and crackers, so to get some real food I was stoked! They stayed for a bit and left and then I was left by myself for the next 12 hours, except for the nurses coming in and out. I really like my overnight nurse, she talked to me throughout the night because I couldn't sleep. I find it really surprising that her first concert was just a few years ago and it was a Metallica concert, oh I forgot, she's in her 50's and has grandkids!!! Grandma knows how to have time! My biggest problem in sleeping is that everytime I dosed off to sleep, I felt like I would stop breathing. This literally happened every time I fell asleep. I don't think I slept until around 6 and then the nurse came in at 8 to give me my meds, so I probably got maybe 2 hours of sleep.
The doctor came to visit around 9 and told me that there was a lot of scar tissue and a lot of new lesions from the endo. Not really that surprising. I still was very interested in learning about the ovary situation and this is what she had to say, my left ovary was covered with scar tissue and lesions and was stuck to my bowels and my right ovary was covered with scar tissue and lesions and stuck to my pelvic wall. She said I was in more pain because of the way she had to remove everything with the robot. Luckily she was able to do it all without cutting me open but she did say she came awfully close to pulling the robot out and cutting me open to get the ovaries out, they didn't seem to want to come out. The damage was done by the previous surgeries had basically ruined my ovaries. I learned a few days later when I was with my grandmother that the doctor told her that with the shape my ovaries were in when she went in there, it was highly unlikely that I would ever have had a successful conception. I'll know more when I go to my post op appointment this Wednesday but she said that I made the best decision that I could have and that she wasn't surprised that I finally asked for pain pills back in January. She's more surprised that I lasted as long as I did without the pain pills. Can't wait to see those pictures next week!
This past week being home has been a journey to say the least. Christina came to stay for 2 days and I'm so very glad that she did. I was so scared about being alone for a bit and to have her here for me means more than she'll ever know. Not only could I not do anything, but she was just there if I needed some to talk to. She left Saturday morning to get back to her family and Kristin came down to spend the day with me cause I just wasn't ready to be alone just yet. I didn't sleep much the first few days I was home. I would stay up till 10 or later and then wake up early in the morning and then take a nap, I was probably getting around 8 hours with the nap included. I don't think I really slept well till Monday or Tuesday. Monday was my first venture out of the house. I spent a few hours at my grandparents, I needed to see my dogs. I think I got over there around 2 and was ready to come home by 6 and I was completely exhausted. I went out today and didn't stay long but thats a whole other story!
When I woke up after surgery they put a hormone patch on me and told me it would last a week and then I would start the pills the doctor gave me. Well I started the pills yesterday and today I had a complete meltdown. My grandmother was lecturing me on learning my body and figuring out how to tell when this happens, hello, my body just went through a dramatic change and I don't know whats going on! Its going to take me longer than a week to figure out when these meltdowns are coming and how to handle them. I cried and cried for hours and felt so empty on the inside. I know the surgery was the best decision for me but learning how to cope with the emotional outbursts is going to take me a bit. Everyone deals with their surgery and after effects differently and hopefully I'll get mine under control and hopefully its somewhat under control when I go back to work, because I don't know if my mastering art of plastering a smile on my face and carrying on will be enough, I'm afraid I'll have a meltdown at work.
I want to thank Christina, Kristin, Hollie (she's coming down tomorrow), my grandmother and all their families for being there for me in the days leading up to and following my surgery. I don't think I could have made the progress that I have if you guys weren't in my corner cheering me on every step of the way. I also want to thank my friends and family for standing by me and my decision and all the prayers that you guys prayed. I may not say enough but I love each and every one of you guys and appreciate the time you took out of your schedules to say a prayer for me. These next few months are going to be rather hard I imagine as I adjust to life on fake hormones. I hope I don't piss anyone off in the process but please bare with me as I deal with all the changes I'm going through. Here's hoping that I come out on the other side a happier person!
Sunday, March 3, 2013
Scared to Death
When I was a kid I had my whole life planned out. Somewhere along the way my life didn't turn out the way the I thought it would. In my mind, I would meet the guy I was gonna marry when I was 23, be married by 27 and if kids were to be, then I would have them before I was 30. In reality, I'm 30, forever single and trying to face the fact that I will never have kids. There have been so many things running through my head this last month or so that has caused many sleepless nights and has me questioning everything.
Infertility isn't talked about. Its kinda like the elephant in the room and no one wants to discuss it. No one stops to think how someone feels when they receive a baby shower announcement in the mail, hears a friend say they are expecting or what its like to sit in a waiting room in the doctors office with pregnant women all around. I always put a smile on my face when I hear a friend say they are expecting but deep inside its absolutely killing me. Knowing that so many people can get pregnant and not think twice about it is devestating. I always dread going to the doctor because 9 times out of 10, they put me in the exam room that is right next to the ultrasound room and all I can hear is a babys heart beating. I want to be happy and excited when I hear all these things but it just breaks my heart. Even when my sister told me she was pregnant there was a bit of jealousy in me, sad I know. One emotion I didn't count on when I was preparing for this surgery was the sense of lose. I have a bit of mourning that I am dealing with and I don't know if anyone can understand it. Its the lose of knowing that I'll never have the excitment of looking at a pregnancy test and seeing a positive sign, the lose of knowing that I'll never feel what a baby's kick is like, the lose of knowing that I'll never have the excitment of seeing my baby on an ultrasound screen and the lose of never knowing what its like to be able to tell someone that I'm having a baby. I have failed at so many things in my lifetime and now I'm failing at the ultimate thing every woman is put here to do, have a child.
I can sit here and say that I've accepted the hand that I've been dealt and on most days I'm fine, however, there are some days that it just kills me. My emotions are completely out of whack right now and will not be stable anytime in the near future. I feel sorry for everyone that is going to have to deal with me after my surgery.
The one thing that scares me the most is the not knowing. I have no idea how anything is going to turn out, and for me, that isn't good. I'm a planner and a thinker (although that does get me in trouble sometimes) and now I feel like I'm staring down the barrel of a gun and have no idea what the future is going to hold. My biggest fear is that I'm not going to feel like a woman anymore. Growing up I was the tomboy in my family and now that I am a woman and finally feel like one, I'm going to lose that. Everything that I love I'm going to lose. How do you come to terms with that? I'm scared of what the long term effects will be from being put on hormones at such a young age and I'm scared because I know this surgery is not a cure all for me. I know that there is a chance that the endo can remain and that there could be more surgeries in my future. WebMD is not a friendly website. I know they probably meant well when they set that website up, but all it does is cause stress and worry for people. I've read some horrible stories about women that elected to have a hyster and then things just went downhill for them. One lady has had 9 surgeries in the 6 years since her hyster, 9 SURGERIES, holy canolie, who can do that? I'm down right terrified that that will be my case. I mean seriously, if something could go wrong, it will with me. My body has never responded to things the way that it should so why would it this time?
I sit here and wonder about all of these things but I know deep down that I'm making the right decision. I can't live my life in pain anymore because at some point I have to start living the life I was meant to have, not the life that I have on pain pills and heating pads. Quality of life has to come into play at some point. This next month is going to be the hardest month I've ever had to face and is going to be very emotional for me. The closer my surgery date gets, the more I start freaking out. I knew going into this that there were going to be days that I would second guess my decision but I didn't realize that I would have this many days. I fully believe that this is my path in life, but there is still a part of me that thinks WHAT IF, but one thing I've always said, you can't live your life thinking about the what ifs, you won't get anywhere thinking that way. So I'll sit here and cry and feel sorry for myself on the days I need to and I'll suck it up like I have so many times before and just carry on. I just hope and pray that when the time comes when being around a baby or baby related things, that my friends and family will understand. Its not that I'm not happy for you and yours, but just remember that I'm still in mourning and don't know how long it will take for me to be ok to be around that.
Infertility isn't talked about. Its kinda like the elephant in the room and no one wants to discuss it. No one stops to think how someone feels when they receive a baby shower announcement in the mail, hears a friend say they are expecting or what its like to sit in a waiting room in the doctors office with pregnant women all around. I always put a smile on my face when I hear a friend say they are expecting but deep inside its absolutely killing me. Knowing that so many people can get pregnant and not think twice about it is devestating. I always dread going to the doctor because 9 times out of 10, they put me in the exam room that is right next to the ultrasound room and all I can hear is a babys heart beating. I want to be happy and excited when I hear all these things but it just breaks my heart. Even when my sister told me she was pregnant there was a bit of jealousy in me, sad I know. One emotion I didn't count on when I was preparing for this surgery was the sense of lose. I have a bit of mourning that I am dealing with and I don't know if anyone can understand it. Its the lose of knowing that I'll never have the excitment of looking at a pregnancy test and seeing a positive sign, the lose of knowing that I'll never feel what a baby's kick is like, the lose of knowing that I'll never have the excitment of seeing my baby on an ultrasound screen and the lose of never knowing what its like to be able to tell someone that I'm having a baby. I have failed at so many things in my lifetime and now I'm failing at the ultimate thing every woman is put here to do, have a child.
I can sit here and say that I've accepted the hand that I've been dealt and on most days I'm fine, however, there are some days that it just kills me. My emotions are completely out of whack right now and will not be stable anytime in the near future. I feel sorry for everyone that is going to have to deal with me after my surgery.
The one thing that scares me the most is the not knowing. I have no idea how anything is going to turn out, and for me, that isn't good. I'm a planner and a thinker (although that does get me in trouble sometimes) and now I feel like I'm staring down the barrel of a gun and have no idea what the future is going to hold. My biggest fear is that I'm not going to feel like a woman anymore. Growing up I was the tomboy in my family and now that I am a woman and finally feel like one, I'm going to lose that. Everything that I love I'm going to lose. How do you come to terms with that? I'm scared of what the long term effects will be from being put on hormones at such a young age and I'm scared because I know this surgery is not a cure all for me. I know that there is a chance that the endo can remain and that there could be more surgeries in my future. WebMD is not a friendly website. I know they probably meant well when they set that website up, but all it does is cause stress and worry for people. I've read some horrible stories about women that elected to have a hyster and then things just went downhill for them. One lady has had 9 surgeries in the 6 years since her hyster, 9 SURGERIES, holy canolie, who can do that? I'm down right terrified that that will be my case. I mean seriously, if something could go wrong, it will with me. My body has never responded to things the way that it should so why would it this time?
I sit here and wonder about all of these things but I know deep down that I'm making the right decision. I can't live my life in pain anymore because at some point I have to start living the life I was meant to have, not the life that I have on pain pills and heating pads. Quality of life has to come into play at some point. This next month is going to be the hardest month I've ever had to face and is going to be very emotional for me. The closer my surgery date gets, the more I start freaking out. I knew going into this that there were going to be days that I would second guess my decision but I didn't realize that I would have this many days. I fully believe that this is my path in life, but there is still a part of me that thinks WHAT IF, but one thing I've always said, you can't live your life thinking about the what ifs, you won't get anywhere thinking that way. So I'll sit here and cry and feel sorry for myself on the days I need to and I'll suck it up like I have so many times before and just carry on. I just hope and pray that when the time comes when being around a baby or baby related things, that my friends and family will understand. Its not that I'm not happy for you and yours, but just remember that I'm still in mourning and don't know how long it will take for me to be ok to be around that.
Thursday, February 7, 2013
Back in 2012
My last surgery was in December of 2011 and like the others before, I went in with an open mind. The only difference this time, I came out worse than I went in. My last surgery didn't do anything for me. I recovered from the surgery fine but the pain was still there and there seemed to be nothing that could be done. The posts below are posts from my personal blog from last year. I hope that they show that my decision to have the hyster wasn't done without much consideration, its a decision that I have struggled with since my initial diagnosis.
After my last surgery didn't go so well, my gyno threw her hands up in the air and said she didn't know what else to do for me. At first she just told me to get married and get pregnant, my reaction "Why didn't I think of that!" Seriously? I know that she's probably not nearly as frustrated as I am, but sarcasm is not necessarily the best option to have at a time like this. She told me that she thought that the endo had spread to my uterus muscle, and if this was the case, there was nothing more she would be able to do. The only thing she could do, try to help keep the periods at bay, which at this point, she's not doing a very good job at! That new birth control she swore on isn't working like I was hoping, I swear I have had more cycles on that than I did before I got on it! Right now I'm really thinking about having it taken out, the only thing stopping me, the $600 price tag that came with the medicine. She gave me the option of seeing a fertility doctor who specializes in endo or sending me to a pain management doctor, the latter which is not an option because I simply refuse to live my life on pain pills (to many addicts in my family).
Well it took a few weeks to get the call that the appointment was scheduled but it finally came. I have to say something before I continue, before the appointment was set and I was told that I was going to see a specialist I had a very long conversation with my grandmother. At this point she is very much against me ever having kids, she constantly repeats that kids are so much to deal with, your life isn't yours anymore and that if she had it to do over again, she wouldn't have any. She is not someone that is very easy to talk to at times, although at this point in my life, I don't have many options. Anyways, during this conversation I told her that I knew I was going to be having another surgery this year and that I didn't know if I was ready for it. I also told her that I wasn't sure if I felt comfortable going to see a fertility doctor just yet, there is just a feeling of despair when I think about having to go to a fertility doctor. I have been preparing for this for roughly 5 years now, or so I thought. You can think about what the impact of walking into a fertility clinic will be like all you want, but until you walk through those doors, you have no idea. Knowing a little bit about what my sister just went through in regards to IVF, I was scared shitless to go into this place, to make it worse, I was going in alone (which also seems to be the way my life works). Knowing that it is so easy for some people to have children and knowing that half of those people either don't take care of them like they should or just don't give a damn is absolutely heartbreaking for someone like me. I know that when my cousin told me she was having an abortion, I was pissed beyond belief. I didn't understand how someone could do that to a baby! I still don't get it and I still don't believe in it. Anyways, I'm getting sidetracked.....
The doctor sat me down in his office and really talked to me. This is a first that I have ever experienced and I'm highly impressed, note that we are 5 minutes into the appointment! He asks the general questions, why I'm here, what I hope to achieve, where is the pain, how bad are your cycles, etc. etc. Wait, did he just ask me where my pain is? I do believe he did. Not one doctor has ever asked me where my pain is at, they all just assume that I have the same pain that most other people do and don't investigate any further. I think I have just found the best doctor in the world!! Note that we are 10 minutes into the appointment! So I tell him where my pain is and the reaction he has is absolutely amazing. He nods his head and says "That explains a lot", well for me it didn't but he did finally explain it all later in the visit. The round of general questions goes on and he decides that all he is going to do during the first visit is an exam, to which I'm mentally begging not to have, they are extremely painful and I go through this every few months or so, happens way more often than I would like. Exam time, oh boy! Yes the exam was once again extremely painful and there was a point that I thought I would just kick him in the head for making the pain that much worse, I mean my foot was right there in the vicinity of his head after all. Back to the office for more talking and he immediately tells me that I need to have another surgery, oh the joys of being right. He explains that there are nerve endings that are in my cervix and that since my cervix is so severely jacked up that the nerve endings need to be burned off. He is about 99% positive that if those nerve endings are burned, than my pain will cease to exist. Could I be hearing him right? Could I finally get through a month without having to take pain pills? Could I have a cycle without wishing that I would just die and get it over with (not being dramatic, thats how bad the pain is sometimes)? Holy crap, this is music to my ears!! Now I'm fully aware that this requires surgery, of which I am in no way ready for, either financially or mentally, but I have to try something. Living this way since I got my period at 13 has been hell. My entire reproductive system tortures me on a monthly basis and I am just sick and tired of it. He also talked about my acne, my weight problem and some other things that I have issues with, all of which he is hoping that he might be able to correct with the right medication. See the PCOS causes a lot of problems for women, and I seem to have most of them right now! I have to have a bunch of blood tests run and I go back to him in a little over a week to get my results and to have an ultrasound.
So after some consideration, I have decided that the best option for me at this point is to have another surgery and pray to God that this helps with something. At this point there is nothing else for me to do but hope and pray that the pain is minimal before my surgery time comes around. If I was ready for it, I would have my surgery the next available date, but I'm just not ready for it. I still have a long road to go that hopefully ends with a child being born, hopefully my child, but who knows, God may have another direction for my life and I may just not have been informed yet. Until that day comes, I'll stay on the path I was given, try my hardest to not let the bad days get to me and just keep on going, and hopefully I can do it with a smile, even on the days that I'm wanting to rip my ovaries out!
Friday, January 13, 2012
and again and again! This seems to be the way that my life has turned out, or so it seems when it comes to my life with endometriosis and PCOS.
After my last surgery didn't go so well, my gyno threw her hands up in the air and said she didn't know what else to do for me. At first she just told me to get married and get pregnant, my reaction "Why didn't I think of that!" Seriously? I know that she's probably not nearly as frustrated as I am, but sarcasm is not necessarily the best option to have at a time like this. She told me that she thought that the endo had spread to my uterus muscle, and if this was the case, there was nothing more she would be able to do. The only thing she could do, try to help keep the periods at bay, which at this point, she's not doing a very good job at! That new birth control she swore on isn't working like I was hoping, I swear I have had more cycles on that than I did before I got on it! Right now I'm really thinking about having it taken out, the only thing stopping me, the $600 price tag that came with the medicine. She gave me the option of seeing a fertility doctor who specializes in endo or sending me to a pain management doctor, the latter which is not an option because I simply refuse to live my life on pain pills (to many addicts in my family).
Well it took a few weeks to get the call that the appointment was scheduled but it finally came. I have to say something before I continue, before the appointment was set and I was told that I was going to see a specialist I had a very long conversation with my grandmother. At this point she is very much against me ever having kids, she constantly repeats that kids are so much to deal with, your life isn't yours anymore and that if she had it to do over again, she wouldn't have any. She is not someone that is very easy to talk to at times, although at this point in my life, I don't have many options. Anyways, during this conversation I told her that I knew I was going to be having another surgery this year and that I didn't know if I was ready for it. I also told her that I wasn't sure if I felt comfortable going to see a fertility doctor just yet, there is just a feeling of despair when I think about having to go to a fertility doctor. I have been preparing for this for roughly 5 years now, or so I thought. You can think about what the impact of walking into a fertility clinic will be like all you want, but until you walk through those doors, you have no idea. Knowing a little bit about what my sister just went through in regards to IVF, I was scared shitless to go into this place, to make it worse, I was going in alone (which also seems to be the way my life works). Knowing that it is so easy for some people to have children and knowing that half of those people either don't take care of them like they should or just don't give a damn is absolutely heartbreaking for someone like me. I know that when my cousin told me she was having an abortion, I was pissed beyond belief. I didn't understand how someone could do that to a baby! I still don't get it and I still don't believe in it. Anyways, I'm getting sidetracked.....
The doctor sat me down in his office and really talked to me. This is a first that I have ever experienced and I'm highly impressed, note that we are 5 minutes into the appointment! He asks the general questions, why I'm here, what I hope to achieve, where is the pain, how bad are your cycles, etc. etc. Wait, did he just ask me where my pain is? I do believe he did. Not one doctor has ever asked me where my pain is at, they all just assume that I have the same pain that most other people do and don't investigate any further. I think I have just found the best doctor in the world!! Note that we are 10 minutes into the appointment! So I tell him where my pain is and the reaction he has is absolutely amazing. He nods his head and says "That explains a lot", well for me it didn't but he did finally explain it all later in the visit. The round of general questions goes on and he decides that all he is going to do during the first visit is an exam, to which I'm mentally begging not to have, they are extremely painful and I go through this every few months or so, happens way more often than I would like. Exam time, oh boy! Yes the exam was once again extremely painful and there was a point that I thought I would just kick him in the head for making the pain that much worse, I mean my foot was right there in the vicinity of his head after all. Back to the office for more talking and he immediately tells me that I need to have another surgery, oh the joys of being right. He explains that there are nerve endings that are in my cervix and that since my cervix is so severely jacked up that the nerve endings need to be burned off. He is about 99% positive that if those nerve endings are burned, than my pain will cease to exist. Could I be hearing him right? Could I finally get through a month without having to take pain pills? Could I have a cycle without wishing that I would just die and get it over with (not being dramatic, thats how bad the pain is sometimes)? Holy crap, this is music to my ears!! Now I'm fully aware that this requires surgery, of which I am in no way ready for, either financially or mentally, but I have to try something. Living this way since I got my period at 13 has been hell. My entire reproductive system tortures me on a monthly basis and I am just sick and tired of it. He also talked about my acne, my weight problem and some other things that I have issues with, all of which he is hoping that he might be able to correct with the right medication. See the PCOS causes a lot of problems for women, and I seem to have most of them right now! I have to have a bunch of blood tests run and I go back to him in a little over a week to get my results and to have an ultrasound.
So after some consideration, I have decided that the best option for me at this point is to have another surgery and pray to God that this helps with something. At this point there is nothing else for me to do but hope and pray that the pain is minimal before my surgery time comes around. If I was ready for it, I would have my surgery the next available date, but I'm just not ready for it. I still have a long road to go that hopefully ends with a child being born, hopefully my child, but who knows, God may have another direction for my life and I may just not have been informed yet. Until that day comes, I'll stay on the path I was given, try my hardest to not let the bad days get to me and just keep on going, and hopefully I can do it with a smile, even on the days that I'm wanting to rip my ovaries out!
January 29, 2012
The endo doctor sent me for some blood work and let me tell you, I got very sick that day, taking that medicine was icky and it didn't settle well with my stomach! I went back to the doctor this past Monday and got the results of my tests. The one that I was mainly worried about was the one that he waited till the end of my visit to actually tell me! Needless to say, I was a nervous wreck the entire visit. My AMH level is at a 1.3, the response from my doctor was its normal, the response from my sister, yucky! So at this point, I still am not sure what the hell the 1.3 means! The other thing I was worried about was my insulin test which came back showing that I was insulin resistant. So from what my doctor says, my body produces to much insulin and my ovaries are not allowing my body to function properly, its something that is very common in people with PCOS. Now I'm on some medicine to help regulate my insulin and he is also hoping that it will help with my weight problem. I've read many articles stating that PCOS causes obesity. I'm not saying its all from the PCOS, I mean lets face it, it runs in the family and I haven't been as active since I got out of school, even though in school I was always on the bigger side. For the most part I was always happy with the way I looked, really didn't bother me so much that I was bigger, but lately, its really started bothering me. I think it could be the fact that I'm getting older, my clock is ticking very loudly and the fact that I'm permanently single! Regardless of the fact, I have started working out more and I'm eating a lot better than I was. Only time will tell if the medicine and everything else levels my body out, but I can say that since my first doctor appointment and yesterday morning, my scale is down 10 pounds, although I can't really tell a difference in my clothes yet, but I have had a few people say that I look like I'm losing some weight.
March 5, 2012
So the endo specialist told me that I could have this surgery and it would take the pain away and that my life would be so much better, I was so excited about this and really thought that this was the way to go, however, I realized that the doctor was an ass. I was denied coverage from the insurance company because they still consider the surgery to be an experimental procedure, so it was going to cost me over $3000 to have this surgery done. The insurance company did say that I could appeal the decision and have the doctor write a letter stating why the surgery was medically needed. So I brought this up to the nurse when she called and she said that she would ask the doctor and get back to me. Well when she called me she told me that the doctor informed her it was a waste of his time to write a letter because he didn't think that it was going to make a difference. Big problem there. A doctor shouldn't ever tell his patient that their issue is a waste of their time, that doesn't fly. So I told the nurse that it was a waste of my time to continue seeing him as a doctor if that was going to be his attitude. I made an appointment for my original doctor to see what she said. She's going to get all the info from the specialist and then let me know what she thinks. Her decision regarding the surgery will help make my decision about the surgery that much easier.
March 19, 2012
So I have decided that I'm not having the surgery to burn the nerve endings in my cervix. I went and saw my original doctor again and she called me about a week after we talked and she told me that the surgery was still experimental and that there are way too many things that could go wrong for it to be considered successful. She has said that I probably need to see a urologist and that if I wanted to see another fertility doctor then I would need to go to OKC since I have seen the 2 top doctors in Tulsa and don't like them. At this point, I'm giving up fighting. I'm tired of trying everything under the sun and tired of going to the doctor all the time. I've decided that I'm just going to let everything go for now and I'm going to see how long I can go with the pain and then I'll make my decision regarding the hysterectomy. I don't see myself getting married or settling down anytime soon and I'm in no way shape or form ready to have a child right now. I don't want to make a decision right now that will affect the rest of my life without thinking everything through. I've prayed for some insight and a direction to go so at this point its just me sitting here waiting on a sign. Nanny told me years ago that she thought I would have kids in my life but that she didn't believe that they would be mine. She sees me as a stepmother or such. I know that there are other options out there for me so its just a waiting game at this point. However, I'm not going to live with this much pain for very much longer. At some point you have to stop and think about the quality of your life.
Friday, January 25, 2013
Why Me?
I've asked this question a million times. I never get an answer but its always in the back of my mind. I know some people that have never had any problems with their periods and whatnot and can't help but feel a little jealous. I've never know what a "NORMAL" period feels like. For as long as I can remember I've always had problems. I can remember laying in bed as a teenager crying because the pain was so bad that sitting, laying, walking, anything was painful. My mother thought I was just be dramatic and I believe that a lot of people thought the same thing. I missed school all the time because of this, I mean I almost didn't get credit for my first semester of high school because I had missed so many days, the majority of them from being in pain. Why couldn't I have been one of the ones that knew when it was coming, would only last for a few days and not have any problems? Why did I have to be the one that never knew when it would happen, last forever and feel like I was dying every day that it was around? Guess it just wasn't in my cards. The other why me question is why am I infertile? Aside from my sister, no one else in my family has had problems. Every other person in my family is fertile and they pop out kids like they are going out of style. And I know for sure that most of them shouldn't have had kids but thats a whole other story!! These same people have kids that they don't have contact with or see and talk to them rarely, I really don't believe thats how a parent should act. Now I was never the girl that dreamed of having kids and raising a huge family until I was told that it might not happen. Even when Tracy and I were planning our future together when I was 18, I felt a sense that it just wasn't going to be for me when the topic of kids came up, of everything we discussed, that was the one topic we couldn't agree on. Might have been a blessing that things didn't work between us, he's now happily married with 2 boys, something he may never have had if he had stayed with me.
I firmly believe that any desire to have my own kids had everything to do with society pressures and the old saying "You always want what you can't have!"
Society pressures: There is a song out right now and the opening line is "If you don't have 2 kids by the time your 21 your probably gonna die alone, at least thats what tradition told you" and honestly thats exactly what the pressure feels like. I'm not wanting to take anything away from people that have found their happily ever after but seriously, its not for everyone. I opted not to go to my high school reunion because I honestly felt like a failure as a woman. Seeing as how most of my class has settled down and is having kids, I felt like the odd man out. I think society still expects the woman to get married ASAP and start building a family and if you don't, then you have failed. Not everyone is made for this path and society tends to frown upon that in general. The perfect example of this, anytime I see someone I haven't seen in awhile, the first questions are "Are you married? Have any kids?" Why can't they ask "So hows life treating you?" Seeming as how I'm forever single, these questions really feel like salt being poured into an open wound and it really gets old since I always have the same answer, "No I'm not married and I don't have kids." This answer isn't likely to change in the near future.
Wanting what you can't have: I clearly remember when I went in for my checkup after my surgery and the doctor telling me the diagnosis and telling me that biological kids might not be in my future I felt like I was being robbed. What was I being robbed of? I mean I never really wanted kids but that was my decision and now your telling me that its not my decision but its a decision that my body has made for me, are you serious? From that moment on, I wanted kids and was devestated by that (only now do I see how crazy this is). Then it seemed like everyone around me was having babies, babies were every where! Family members, friends, co-workers, babies were all over the place and by golly I wanted one. The ultimate blow was when someone close told me she was having an abortion because she didn't think she could stay off the drugs long enough to have a baby. Seriously, your going to sit there and tell me, the girl who can't have kids, that your having an abortion because you screwed around and got knocked up because your an idiot. I was livid. I couldn't see how someone could be so insensitive to what I was going through and telling me that they were having an abortion. I begged this person to give the baby a chance and place it up for adoption but that wasn't to be. It saddens me to know that someone can't see what a miracle a baby is. I know I joke around a lot about kids but its always been a way to hide the pain from learning that it may not happen for me because at the time I felt like I wanted one!
It took me awhile to come to my senses and realize that biological kids weren't in my future. I say biological because I fully believe that one day I will have kids, one way or another, kids will be in my future. People tell me all the time, oh I had the same problem and look I've had 2 kids, it will happen just give it time. Well, that may have been true for them and it will be true for me, however, you don't have to give birth to a child to be a mom. I'm fully aware that there are other ways to have a biological baby. I could spend thousands of dollars on IVF or even consider a surrogate, but the realistic side of me gets the better of me and knows that there is no guarantee that this will ever work for me. My AMH levels aren't that high and the older I get, the less likely my chances are. I just can't see spending all that money on something that may or may not happen. I know it can work because baby Cooper was a miracle for my sister and when I say miracle, thats exactly what I mean, Coop was a miracle, but I'm not willing to take that chance. There are children all over the world that need a loving home and someone to take care of them and when the time is right and I fully believe that the good Lord will let me know when that time is, I'll open my heart and home to a child in need of love. No that child won't be biologically mine, but he/she will be mine none the less. Biology doesn't make a family and I won't let biology ruin my future!
I firmly believe that any desire to have my own kids had everything to do with society pressures and the old saying "You always want what you can't have!"
Society pressures: There is a song out right now and the opening line is "If you don't have 2 kids by the time your 21 your probably gonna die alone, at least thats what tradition told you" and honestly thats exactly what the pressure feels like. I'm not wanting to take anything away from people that have found their happily ever after but seriously, its not for everyone. I opted not to go to my high school reunion because I honestly felt like a failure as a woman. Seeing as how most of my class has settled down and is having kids, I felt like the odd man out. I think society still expects the woman to get married ASAP and start building a family and if you don't, then you have failed. Not everyone is made for this path and society tends to frown upon that in general. The perfect example of this, anytime I see someone I haven't seen in awhile, the first questions are "Are you married? Have any kids?" Why can't they ask "So hows life treating you?" Seeming as how I'm forever single, these questions really feel like salt being poured into an open wound and it really gets old since I always have the same answer, "No I'm not married and I don't have kids." This answer isn't likely to change in the near future.
Wanting what you can't have: I clearly remember when I went in for my checkup after my surgery and the doctor telling me the diagnosis and telling me that biological kids might not be in my future I felt like I was being robbed. What was I being robbed of? I mean I never really wanted kids but that was my decision and now your telling me that its not my decision but its a decision that my body has made for me, are you serious? From that moment on, I wanted kids and was devestated by that (only now do I see how crazy this is). Then it seemed like everyone around me was having babies, babies were every where! Family members, friends, co-workers, babies were all over the place and by golly I wanted one. The ultimate blow was when someone close told me she was having an abortion because she didn't think she could stay off the drugs long enough to have a baby. Seriously, your going to sit there and tell me, the girl who can't have kids, that your having an abortion because you screwed around and got knocked up because your an idiot. I was livid. I couldn't see how someone could be so insensitive to what I was going through and telling me that they were having an abortion. I begged this person to give the baby a chance and place it up for adoption but that wasn't to be. It saddens me to know that someone can't see what a miracle a baby is. I know I joke around a lot about kids but its always been a way to hide the pain from learning that it may not happen for me because at the time I felt like I wanted one!
It took me awhile to come to my senses and realize that biological kids weren't in my future. I say biological because I fully believe that one day I will have kids, one way or another, kids will be in my future. People tell me all the time, oh I had the same problem and look I've had 2 kids, it will happen just give it time. Well, that may have been true for them and it will be true for me, however, you don't have to give birth to a child to be a mom. I'm fully aware that there are other ways to have a biological baby. I could spend thousands of dollars on IVF or even consider a surrogate, but the realistic side of me gets the better of me and knows that there is no guarantee that this will ever work for me. My AMH levels aren't that high and the older I get, the less likely my chances are. I just can't see spending all that money on something that may or may not happen. I know it can work because baby Cooper was a miracle for my sister and when I say miracle, thats exactly what I mean, Coop was a miracle, but I'm not willing to take that chance. There are children all over the world that need a loving home and someone to take care of them and when the time is right and I fully believe that the good Lord will let me know when that time is, I'll open my heart and home to a child in need of love. No that child won't be biologically mine, but he/she will be mine none the less. Biology doesn't make a family and I won't let biology ruin my future!
Monday, January 21, 2013
In The Beginning
If your reading this, then for the most part you are fully aware of my journey thus far. Everyone knows about the endometriosis and PCOS and the problems that come from these horrible conditions. For those that may not know what either of them are here is a brief explanation:
Endometriosis: abnormal growth of cells (endometrial cells) similar to those that form the inside of the uterus, but in a location outside of the uterus. Endometrial cells are cells that are shed each month during menstruation. The cells of endometriosis attach themselves to tissue outside the uterus and are called endometriosis implants. These implants are most commonly found on the ovaries, the Fallopian tubes, outer surfaces of the uterus or intestines, and on the surface lining of the pelvic cavity. They can also be found in the vagina, cervix, and bladder, although less commonly than other locations in the pelvis. Rarely, endometriosis implants can occur outside the pelvis, on the liver, in old surgery scars, and even in or around the lung or brain. Endometrial implants, while they can cause problems, are benign (not cancerous).
PCOS (poly-cystic ovary syndrome): is a problem in which a woman’s hormones are out of balance. It can cause problems with your periods and make it difficult to get pregnant. PCOS may also cause unwanted changes in the way you look. If it is not treated, over time it can lead to serious health problems, such as diabetes and heart disease.
At the age of 24 I was diagnosed with both endo and PCOS. My sister had been diagnosed before me and in all honestly I never thought that I would have the same problem. I mean I have had female problems for as long as I can remember but my symptoms were not the same as hers so I just assumed that it was some freak thing that she got, then to my horror, the doctor told me that I had been given the same horrible curse as her, however, I will say, hers is much worse than mine and how she's dealt with it for so long I'll never understand. My pain tolerance is not that strong and I'm a huge wimp when it comes to dealing with everything that comes with the endo and the pcos. Diagnosis came after my first surgery and within a month I was put on Lupron. Lupron shuts your system down and throws you into menopause. I've always heard the older ladies complaining about hot flashes and night sweats and really thought that they were just crazy. I never imagined that your body could go from normal temps to being so hot that you think you need to go jump in a pool to get relief! Then I got my first hot flash. It was CRAZY! With menopause you get hot flashes, night sweats, attitude problems and for me, insomnia. Six months of HELL. I really don't know how to explain it other than saying it was hell. My sister warned me but you can't really prepare for dealing with it because you never know how your body is going to react to the medicine. I was a bitch, I was uncomfortable and just plain miserable the entire time I was on the meds. Never in a million years did I think I would be 24 and dealing with menopause. Fast forward 2 years and once again I was back in it. The meds worked for some time, but after about 2 years the endo was back with vengence. I missed a week of work and was absolutely miserable. I spent most of the time crying or sleeping. I found a new doctor and set out to have another surgery hoping to get some relief. About six months after my surgery, I went on the Lupron yet again and was facing my second battle with menopause at the young age of 26. This held out till I was 28 and by then it was time to have yet another surgery to remove any new growth. I was 29 when I had this surgery and relief wasn't to be found this time. My recover from the surgery was fast but the pain from the endo never went away. The doctor fully believed that the endo had moved into my uterus muscle and she was finally at a loss for what to do. She sent me to a fertility doctor who wanted to do an expieremental surgery that wouldn't guarantee any relief and could cause more complications in the future. So here I am at age 30 and I'm now getting ready to have a hysterectomy. This is where my true journey is going to start.
I begged my doctor to just remove everything when I was 26 and she refused, said I was to young and since I hadn't had kids yet there was no way in the world she would give me what I wanted. Well now, she's told me that its time to start thinking about having one done. I informed her today of my decision and will now start the process of getting what I hope to consider my final surgery with her underway. Everyone has a path for their life and this is mine. I'm now 30, still don't have kids and will never have any biological kids to call my own. However, if there is one thing I have learned in my life, blood is not always thicker than water and just because you share blood doesn't mean your a family. My sister was adopted as a baby and I have seen what a loving adoptive family can do for a child. That being said, having my own kids isn't a concern for me. My concern is not living my life like I should and being in constant pain puts me in a position to not have the life I want. I know I'm going to hear people say that I'm making the wrong decision and the only thing I can say is this, those who feel that way haven't spent a day in my shoes. When your curled up in a ball crying your eyes out because the pain pills and the heating pads aren't working then you can make your comments, until then, don't tell me I'm making the wrong decision. This isn't a decision that came lightly. I didn't just wake up this morning and think, oh hey, I think I'll have a hysterectomy tomorrow. This decision has come from the 15 plus years of living in pain, the millions of tears that I have shed and the ungawdly amount of money I have spent on ultrasounds, surgeries, birth control pills, Lurpon, pain pills, heating pads and everything else just to survive.
This is a journey that no woman should have to make at such a young age. I'm going to try to go through the changes that are coming with as much dignity as I can and just keep praying. I've always heard God never gives you more than you can handle so I'm going into this with as much faith as I can. God has a path for me and this is just the beginning!!
Endometriosis: abnormal growth of cells (endometrial cells) similar to those that form the inside of the uterus, but in a location outside of the uterus. Endometrial cells are cells that are shed each month during menstruation. The cells of endometriosis attach themselves to tissue outside the uterus and are called endometriosis implants. These implants are most commonly found on the ovaries, the Fallopian tubes, outer surfaces of the uterus or intestines, and on the surface lining of the pelvic cavity. They can also be found in the vagina, cervix, and bladder, although less commonly than other locations in the pelvis. Rarely, endometriosis implants can occur outside the pelvis, on the liver, in old surgery scars, and even in or around the lung or brain. Endometrial implants, while they can cause problems, are benign (not cancerous).
PCOS (poly-cystic ovary syndrome): is a problem in which a woman’s hormones are out of balance. It can cause problems with your periods and make it difficult to get pregnant. PCOS may also cause unwanted changes in the way you look. If it is not treated, over time it can lead to serious health problems, such as diabetes and heart disease.
At the age of 24 I was diagnosed with both endo and PCOS. My sister had been diagnosed before me and in all honestly I never thought that I would have the same problem. I mean I have had female problems for as long as I can remember but my symptoms were not the same as hers so I just assumed that it was some freak thing that she got, then to my horror, the doctor told me that I had been given the same horrible curse as her, however, I will say, hers is much worse than mine and how she's dealt with it for so long I'll never understand. My pain tolerance is not that strong and I'm a huge wimp when it comes to dealing with everything that comes with the endo and the pcos. Diagnosis came after my first surgery and within a month I was put on Lupron. Lupron shuts your system down and throws you into menopause. I've always heard the older ladies complaining about hot flashes and night sweats and really thought that they were just crazy. I never imagined that your body could go from normal temps to being so hot that you think you need to go jump in a pool to get relief! Then I got my first hot flash. It was CRAZY! With menopause you get hot flashes, night sweats, attitude problems and for me, insomnia. Six months of HELL. I really don't know how to explain it other than saying it was hell. My sister warned me but you can't really prepare for dealing with it because you never know how your body is going to react to the medicine. I was a bitch, I was uncomfortable and just plain miserable the entire time I was on the meds. Never in a million years did I think I would be 24 and dealing with menopause. Fast forward 2 years and once again I was back in it. The meds worked for some time, but after about 2 years the endo was back with vengence. I missed a week of work and was absolutely miserable. I spent most of the time crying or sleeping. I found a new doctor and set out to have another surgery hoping to get some relief. About six months after my surgery, I went on the Lupron yet again and was facing my second battle with menopause at the young age of 26. This held out till I was 28 and by then it was time to have yet another surgery to remove any new growth. I was 29 when I had this surgery and relief wasn't to be found this time. My recover from the surgery was fast but the pain from the endo never went away. The doctor fully believed that the endo had moved into my uterus muscle and she was finally at a loss for what to do. She sent me to a fertility doctor who wanted to do an expieremental surgery that wouldn't guarantee any relief and could cause more complications in the future. So here I am at age 30 and I'm now getting ready to have a hysterectomy. This is where my true journey is going to start.
I begged my doctor to just remove everything when I was 26 and she refused, said I was to young and since I hadn't had kids yet there was no way in the world she would give me what I wanted. Well now, she's told me that its time to start thinking about having one done. I informed her today of my decision and will now start the process of getting what I hope to consider my final surgery with her underway. Everyone has a path for their life and this is mine. I'm now 30, still don't have kids and will never have any biological kids to call my own. However, if there is one thing I have learned in my life, blood is not always thicker than water and just because you share blood doesn't mean your a family. My sister was adopted as a baby and I have seen what a loving adoptive family can do for a child. That being said, having my own kids isn't a concern for me. My concern is not living my life like I should and being in constant pain puts me in a position to not have the life I want. I know I'm going to hear people say that I'm making the wrong decision and the only thing I can say is this, those who feel that way haven't spent a day in my shoes. When your curled up in a ball crying your eyes out because the pain pills and the heating pads aren't working then you can make your comments, until then, don't tell me I'm making the wrong decision. This isn't a decision that came lightly. I didn't just wake up this morning and think, oh hey, I think I'll have a hysterectomy tomorrow. This decision has come from the 15 plus years of living in pain, the millions of tears that I have shed and the ungawdly amount of money I have spent on ultrasounds, surgeries, birth control pills, Lurpon, pain pills, heating pads and everything else just to survive.
This is a journey that no woman should have to make at such a young age. I'm going to try to go through the changes that are coming with as much dignity as I can and just keep praying. I've always heard God never gives you more than you can handle so I'm going into this with as much faith as I can. God has a path for me and this is just the beginning!!
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