my TRUTHS....
Here is the inside scoop to my world. This page is dedicated to all the diseases I have been diagnosed with and live with everyday. An insight to what each is, what its like, how to treat it and how to support the cause. I hope you find it easier to understand what its like for someone who is suffering silently on the inside and doesn't show it on the outside. If you have questions..ASK!
I was diagnosed with endo when I was 16. I was told then I would never have children and I believed the doctors at the time. It was a hard pill to swallow as I wanted a family so bad. Thank goodness I was young and could focus on other things and not let that consume me.
I have had endless laparoscopic procedures to try and get rid of the endo but somehow it always came back or the doctor was never able to get it all and I still have it to this day even after a total/radical hysterectomy.
Besides the surgery I was given Lupron and other drugs to try and keep it at bay but I had serious side effects to the Lupron. After only two shots of it I developed severe hip and joint pain and was not able to walk. I had to discontinue treatment.
Endo is like a spider web of tissue that spreads throughout your abdomen and can attach itself to anything. That includes other vital organs and what not. It can get into your bowels and lungs. It is extremely painful because once it attaches and then attaches to something else it pulls. So when you move it resists and the pain can be excruciating. I can not tell you how many times I hit the floor crying in agony because of this or when I went to move and all of a sudden a sharp pain came over me that would make me double over. As I got older and became sexually active the pain was even greater than I knew from the beginning. It was so painful to have intercourse sometimes I would cry myself to sleep afterwards and the pain would last for days afterwards.
My worst experience with the endo to date is when I went into the emergency room (by myself) with my little girl in tow for an ovarian cyst that was protruding from my abdomen. I knew this pain all to well but I knew this one was abnormally large (like the size of a melon). I was in so much pain I was delirious. I waited and waited for the on call ob/gyn to see me but was being told he was in back to back surgeries all day and he was still not out. I went in around 9pm that evening and with no pain meds I waited for the doctor. Finally around 2am a whole team of people rushed in and the doctor said we were going to surgery right away to do a laparoscopic procedure and I said "ok, I have had many no need to explain let's do this". When I woke later that afternoon I noticed I was put on a morphine drip. I had never been put on a drip after a lap before, so I thought this was very unusual, but thought they felt bad for leaving me with no pain meds before. Soon I needed to use the restroom and called for the nurse to help me. When I went to lift up, I knew right away something was terribly wrong. I lifted my blanket only to see that I had staples across my abdomen like I had just had a c-section, I was mortified!! The nurse kept trying to tell me that this was the surgery he told me he was going to perform, I politely told her I don't think so and wanted to see him right away. To say the least the doctor refused to see me and I had to take an AMA to get out.
I was heavily dosed with Demerol and morphine when I was discharged (I guess he was REALLY feeling bad). My husband and I drove to Texas for Christmas with our daughter a week later. The day after Christmas I noticed that I was looking like I was 9 mths pregnant and ready to pop. My Mom was telling me this can't be normal and I should call my doctor. Well I called the doctor I had been waiting to get an appointment with for months. Mind you I had not actually seen this doctor yet but he took my call. He told me to come to the ER immediately and I said nope, I am coming to you, was not letting another doctor touch me if it wasn't him. He was flattered but was worried, so worried he called the hospital before hand and setup an OR and pre-admitted me. Again, let me remind you I had not met this doctor at all, not one appointment. So, my husband drove me 8 hours back to New Orleans. We got there around 10pm and he was there waiting on us. Met me for the first time and got me into a room and examined me. He took one look and rushed me to surgery. I remember telling him the whole time "PLEASE PLEASE PLEASE don't take my ovaries, I want to have more children", I was terrified that I was about to have an emergency hysterectomy.
When I finally woke everything was dark, there was a faint light at the foot of my bed were three surgeons stood. They were still in their scrubs and gowns and I remember the look on their faces...my heart sank. Dr. Champlin came to my bedside and held my hand and prayed. I could not tell you the emotions running through my head at that time, it was so overwhelming. He then told me that he had to take one of my ovaries, that it was shattered, but the other he made sure was working. He told me that the surgery took 12 hours and two other surgeons to help him finish. I was in awe, I did not know what to think about that. He proceeded to tell me that my body was so riddled with endo that he could not even get it all. It had spread everywhere and was wrapped around my kidneys. He said that they left it in fear with my kidney history that they would have done more damage than good. He also told me that I had a large hematoma at the incision site. He said it was the size of a softball. He was in amazement along with the other two doctors how that thing had not ruptured and killed me. All three doctors were in agreement that it was a miracle I was still alive and that the idiot doctor who performed the last surgery on me did NOTHING!! He opened me and and saw the extent of my ailments and closed me back up!! They wanted his name everything so they could turn him in. After this experience I found out that the doctor had been using cocaine and had performed over 15 surgeries that day with no sleep. I was his last of the night. It was a damn shame.
I am still experiencing difficulties from the endo but not near as bad as I did before the hysterectomy. I do know its still in me around my kidneys and it does cause me great pain some days but I am managing through it. I was asked to start taking the Lupron again but have refused it. I did not want to add to my pain. It can only be seen through surgery, no scan will show endo.
I have had endless laparoscopic procedures to try and get rid of the endo but somehow it always came back or the doctor was never able to get it all and I still have it to this day even after a total/radical hysterectomy.
Besides the surgery I was given Lupron and other drugs to try and keep it at bay but I had serious side effects to the Lupron. After only two shots of it I developed severe hip and joint pain and was not able to walk. I had to discontinue treatment.
Endo is like a spider web of tissue that spreads throughout your abdomen and can attach itself to anything. That includes other vital organs and what not. It can get into your bowels and lungs. It is extremely painful because once it attaches and then attaches to something else it pulls. So when you move it resists and the pain can be excruciating. I can not tell you how many times I hit the floor crying in agony because of this or when I went to move and all of a sudden a sharp pain came over me that would make me double over. As I got older and became sexually active the pain was even greater than I knew from the beginning. It was so painful to have intercourse sometimes I would cry myself to sleep afterwards and the pain would last for days afterwards.
My worst experience with the endo to date is when I went into the emergency room (by myself) with my little girl in tow for an ovarian cyst that was protruding from my abdomen. I knew this pain all to well but I knew this one was abnormally large (like the size of a melon). I was in so much pain I was delirious. I waited and waited for the on call ob/gyn to see me but was being told he was in back to back surgeries all day and he was still not out. I went in around 9pm that evening and with no pain meds I waited for the doctor. Finally around 2am a whole team of people rushed in and the doctor said we were going to surgery right away to do a laparoscopic procedure and I said "ok, I have had many no need to explain let's do this". When I woke later that afternoon I noticed I was put on a morphine drip. I had never been put on a drip after a lap before, so I thought this was very unusual, but thought they felt bad for leaving me with no pain meds before. Soon I needed to use the restroom and called for the nurse to help me. When I went to lift up, I knew right away something was terribly wrong. I lifted my blanket only to see that I had staples across my abdomen like I had just had a c-section, I was mortified!! The nurse kept trying to tell me that this was the surgery he told me he was going to perform, I politely told her I don't think so and wanted to see him right away. To say the least the doctor refused to see me and I had to take an AMA to get out.
I was heavily dosed with Demerol and morphine when I was discharged (I guess he was REALLY feeling bad). My husband and I drove to Texas for Christmas with our daughter a week later. The day after Christmas I noticed that I was looking like I was 9 mths pregnant and ready to pop. My Mom was telling me this can't be normal and I should call my doctor. Well I called the doctor I had been waiting to get an appointment with for months. Mind you I had not actually seen this doctor yet but he took my call. He told me to come to the ER immediately and I said nope, I am coming to you, was not letting another doctor touch me if it wasn't him. He was flattered but was worried, so worried he called the hospital before hand and setup an OR and pre-admitted me. Again, let me remind you I had not met this doctor at all, not one appointment. So, my husband drove me 8 hours back to New Orleans. We got there around 10pm and he was there waiting on us. Met me for the first time and got me into a room and examined me. He took one look and rushed me to surgery. I remember telling him the whole time "PLEASE PLEASE PLEASE don't take my ovaries, I want to have more children", I was terrified that I was about to have an emergency hysterectomy.
When I finally woke everything was dark, there was a faint light at the foot of my bed were three surgeons stood. They were still in their scrubs and gowns and I remember the look on their faces...my heart sank. Dr. Champlin came to my bedside and held my hand and prayed. I could not tell you the emotions running through my head at that time, it was so overwhelming. He then told me that he had to take one of my ovaries, that it was shattered, but the other he made sure was working. He told me that the surgery took 12 hours and two other surgeons to help him finish. I was in awe, I did not know what to think about that. He proceeded to tell me that my body was so riddled with endo that he could not even get it all. It had spread everywhere and was wrapped around my kidneys. He said that they left it in fear with my kidney history that they would have done more damage than good. He also told me that I had a large hematoma at the incision site. He said it was the size of a softball. He was in amazement along with the other two doctors how that thing had not ruptured and killed me. All three doctors were in agreement that it was a miracle I was still alive and that the idiot doctor who performed the last surgery on me did NOTHING!! He opened me and and saw the extent of my ailments and closed me back up!! They wanted his name everything so they could turn him in. After this experience I found out that the doctor had been using cocaine and had performed over 15 surgeries that day with no sleep. I was his last of the night. It was a damn shame.
I am still experiencing difficulties from the endo but not near as bad as I did before the hysterectomy. I do know its still in me around my kidneys and it does cause me great pain some days but I am managing through it. I was asked to start taking the Lupron again but have refused it. I did not want to add to my pain. It can only be seen through surgery, no scan will show endo.
Great article on new discoveries about endo...Check it out!
http://www.hormonesmatter.com/endometriosis-just-reproductive-disease/
http://www.hormonesmatter.com/endometriosis-just-reproductive-disease/
So this story is a hard one to write and an experience I wish on no woman. I was told at 16 I would not have children at all and that devastated me. I had always wanted a big family and that seemed to shoot all my plans down. I did however get pregnant and go onto have a baby girl, she was my miracle. I soon thought that because I had her I should not have issues having another baby, I was sorely mistaken.
After having my first daughter I had 14 miscarriages that my doctor and I were aware of. Many of them requiring a D&C. It was a horrible experience and it crushed me. I lost two babies at 6.5 months and that was just about the death of me. As if loosing that many babies wasn't hard enough emotionally and physically, what I was about to experience was even more traumatic.
I got pregnant again in late 2004 and was bound and determined to find the cause of my miscarriages and to save the baby I was pregnant with. I did alot of research and found a maternal fetal specialist in Fort Worth, TX to take over my care and thank God I found him. He quickly ran some genetic tests and found I had a genetic blood clotting disorder that was causing my miscarriages. Basically I was forming a blood clot and passing it to the baby. He treated me with Heparin injections for the first six months of pregnancy then switched me to blood thinners. During the pregnancy I developed fibroid tumors but everything worked out in the end and I had a perfectly healthy baby girl. After her birth I thought that I was done having children with all the issues I had throughout, but God blessed me again shortly after when I got pregnant again in 2006.
I found out I was pregnant by accident. I was feeling horrible at work for over a week and getting weaker by the day. Finally one day at work I passed out and off to the hospital I went. There is were I found out I was pregnant again but I was not well at all. I had lost 12 lbs in less than two weeks. I was constantly throwing up, I couldn't eat or drink anything without getting sick numerous times a day. Blood tests and ultrasound revealed I was only 3 weeks along. My doctor informed me I was gravely ill and that I had Hyperemesis Gravidarum. He told me in most cases it would be over in a few weeks and I would go on like normal but in the meantime I needed to be put on TPN (total prenatal nutrition) and a anti-nausea pump to help me along. So a PICC line went into my heart to feed me 24/7 and a small pump put into my leg to deliver me non-stop anti-nausea medication. I was sent home after a week and I was to be set up with a nurse at home.
I was beyond miserable, words can not describe the torture that I endured during this time. I could not put even water in my mouth without getting sick. It was constant relentless agony. I spent my days on the floor by the toilet, in the bed or on the couch even though I had two other children to look after. There seemed to be no end in sight. My days filled with dark thoughts and endless crying for relief. When the "expected" time frame had passed and I was still very ill my treatment had to continue, 24/7 delivery of TPN and Zofran. I again was told even though I had passed the mark my symptoms should go away soon but they didn't. They stayed with me to the end.
During the following months I was plagued with kidney infections and getting sick with just regular colds that would not go away. It was hard to be optimistic and to be happy about this pregnancy. I felt so disconnected from reality and from everyone around me. I found out I was having a boy and what should have been the happiest time just wasn't. I had always wanted a boy and so did my husband. I thought the news would lift my spirits and help me fight through this but I was so depressed it just didn't matter. I would have excruciating constipation and migraines that would leave me exhausted and weak for days on end. I had numerous trips to the hospital for various things but the there was one that was almost my demise.
During Christmas time I had begun to get weaker even with the treatment and kidney infection was not letting up and I was sick with an upper respiratory infection. One night my nurse could not ignore that I was becoming more incapacitated. She called the doctor when my fever had rose to 104. They called for an ambulance and I was rushed to the hospital. After arriving my temp was taken again and it had reached an alarming 107. The quickly buried me in ice. I was delusional and hallucinating. Things were coming to me in waves. I know now I had a severe kidney infection and my kidneys were shutting down. Talk of dialysis was becoming a reality. I also had full blown pneumonia. To say the least I was in bad shape and beaten down. I feared for my baby and myself, I did not think either of us were going to make it through. Three days of being packed in ice and my fever started to waiver but the damage was done and I was not getting better. They had tried all the antibiotics that they could while I was pregnant to no avail. My fever loomed around 103 and stayed. My outlook was grim and the doctor was running out of options and time.
It was the night before Christmas Eve and the diagnosis was not good. He told me he did not expect me to make it through the night as my entire body was shutting down that even if they terminated the pregnancy I would most likely not survive either, but I told him that was not an option I had come to far and if I was going to die I wanted to do it at home around my family not in that hospital. He put up a huge fight and kept saying no, but I was not having it. I signed an AMA and they released me. As I was getting ready to be wheeled out he came back and said he could not let me go with nothing, not to just go home without one last ditch effort. So, he asked if I would be willing to take an antibiotic that could possibly have devastating results but may save "my life" not the baby, I was confused and upset. He had to explain to me that this was it, he did not expect the baby to make it but he wanted to try and save me. After a long winded debate I agreed to take deadly doses of vancomycin to try and save my life.
At home everyone gathered and my nurse prepared my treatment, it was going to be a long night indeed. I had 8 of the these balls to be infused with, which were to be given every two hours back to back. The thoughts running through my head were paralyzing. I now know what it is like to be on my death bed and the feelings that overwhelm you and consume you. It was a very dark night and I did not see the light at the end of the tunnel. I laid on the couch and took each of my treatments, I could feel my body being overrun with poison. That is what it felt like, pure poison that was going to kill my baby boy and me. I remember I did not want to sleep I was so afraid I was not going to wake up and that it would all be over. I have never prayed as hard as I did that night, I begged for mercy. I was not ready to go.
I could see the tears of everyone, I could feel my own, it was coming. I remember the rush of warmth that washed over me and the need to close my heavy eyes and I did. The fear washed away from me and I thought this is it, its over. I was dying inside, I did not want to go but accepted my defeat and fell asleep.
Much to my shock I woke up hours later and all the treatment was done. I was shouting in my head " I made it! I am alive! The baby is alive!". I prayed so hard in those first few minutes of being awake, thanking God profusely for saving me and my boy. It was a miracle, plain and simple and I will never forget it. Everyone was shocked but happy.
I stayed sick and constantly sick but I made it through all of it. I went on to deliver him with minimal complications. Our baby boy had arrived and the thought was that everything was instantly supposed to be over as soon as I delivered....WRONG! They had taken my PICC line out right before I delivered so I was not being fed anymore but I still could not eat afterwards. I was still sick for days afterwards and still having to take zofran. It finally all subsided and I was sent home with our new bundle of joy.
It was short lived because a new battle awaited me yet again. I was taken to the hospital three times by ambulance during the first three weeks at home. Only for them to send me home telling me I was having panic attacks. I knew something else was going on but I just didn't know what it was. My chest felt like an elephant was sitting on it and my neck and right arm were cramped and aching. My heart felt like it was going to explode. Finally, on the fourth run by ambulance to the er I got a doctor that asked me if my right arm was hurting me and I said yes, why? He immediately called for the nurse and said we were going to surgery right away. He knew it was my gallbladder, it was rupturing. It was rupturing as he was taking it out of me, he said I was so lucky I got him that day. I also had an upper and lower gi done at the time and they had to repair six holes in my esophagus and stomach from not eating or drinking during the pregnancy. After all that I was sent home again and everything was good for a few months minus the HUGE adjustment to not having a gallbladder and the after effects of not eating or drinking for 9 months.
I got another large cyst on my only remaining ovary and it was big, I knew what that meant...another surgery to drain it. So again back to the hospital to have it drained by laprascopy. It wasn't even two months later I got another one and it was even bigger and it was ready to rupture. So this time going in I was under the advisement that I needed an emergency total hysterectomy. I did not want this as I had not even had time to digest the thought, but I felt pressured into this decision and went with it. So I was given a total hysterectomy and left with nothing. My body went through major shock and it took me a long time to adjust.
I also had to have a bladder sling put in because the tendon to my urethra had been severed during childbirth. TRUST ME when I say this was no bueno!! When this failed it had to be redone...again no fun! Wearing a catheter and not being able to "go" was extremely scary.
Besides all the surgeries for various things my teeth had also started to fall apart literally. I would bite into something and they would crumble. I was in so much pain it was pure hell on earth. I eventually had to have all my teeth pulled on the top and almost all on the bottom except four. It was excruciating pain.
All of the things that I had to endure during and after that pregnancy was almost more than I could handle. Not just for me but for my family as well. The constant carrying for me had taken its toll on them as well. Depression was high during this time and my outlook was not great. The only thing that brought me any joy was my children. Knowing how much I loved them pushed me through those dark days. I know I did not go into alot more detail about my feelings and experience with this but it is really a place I do not wish to go back to ever, the emotions associated with that time are to much to bare. I hope that everyone who reads this gets a better understanding of what this was like and if anyone woman they know that has this needs all the love and support she can get from you!
After having my first daughter I had 14 miscarriages that my doctor and I were aware of. Many of them requiring a D&C. It was a horrible experience and it crushed me. I lost two babies at 6.5 months and that was just about the death of me. As if loosing that many babies wasn't hard enough emotionally and physically, what I was about to experience was even more traumatic.
I got pregnant again in late 2004 and was bound and determined to find the cause of my miscarriages and to save the baby I was pregnant with. I did alot of research and found a maternal fetal specialist in Fort Worth, TX to take over my care and thank God I found him. He quickly ran some genetic tests and found I had a genetic blood clotting disorder that was causing my miscarriages. Basically I was forming a blood clot and passing it to the baby. He treated me with Heparin injections for the first six months of pregnancy then switched me to blood thinners. During the pregnancy I developed fibroid tumors but everything worked out in the end and I had a perfectly healthy baby girl. After her birth I thought that I was done having children with all the issues I had throughout, but God blessed me again shortly after when I got pregnant again in 2006.
I found out I was pregnant by accident. I was feeling horrible at work for over a week and getting weaker by the day. Finally one day at work I passed out and off to the hospital I went. There is were I found out I was pregnant again but I was not well at all. I had lost 12 lbs in less than two weeks. I was constantly throwing up, I couldn't eat or drink anything without getting sick numerous times a day. Blood tests and ultrasound revealed I was only 3 weeks along. My doctor informed me I was gravely ill and that I had Hyperemesis Gravidarum. He told me in most cases it would be over in a few weeks and I would go on like normal but in the meantime I needed to be put on TPN (total prenatal nutrition) and a anti-nausea pump to help me along. So a PICC line went into my heart to feed me 24/7 and a small pump put into my leg to deliver me non-stop anti-nausea medication. I was sent home after a week and I was to be set up with a nurse at home.
I was beyond miserable, words can not describe the torture that I endured during this time. I could not put even water in my mouth without getting sick. It was constant relentless agony. I spent my days on the floor by the toilet, in the bed or on the couch even though I had two other children to look after. There seemed to be no end in sight. My days filled with dark thoughts and endless crying for relief. When the "expected" time frame had passed and I was still very ill my treatment had to continue, 24/7 delivery of TPN and Zofran. I again was told even though I had passed the mark my symptoms should go away soon but they didn't. They stayed with me to the end.
During the following months I was plagued with kidney infections and getting sick with just regular colds that would not go away. It was hard to be optimistic and to be happy about this pregnancy. I felt so disconnected from reality and from everyone around me. I found out I was having a boy and what should have been the happiest time just wasn't. I had always wanted a boy and so did my husband. I thought the news would lift my spirits and help me fight through this but I was so depressed it just didn't matter. I would have excruciating constipation and migraines that would leave me exhausted and weak for days on end. I had numerous trips to the hospital for various things but the there was one that was almost my demise.
During Christmas time I had begun to get weaker even with the treatment and kidney infection was not letting up and I was sick with an upper respiratory infection. One night my nurse could not ignore that I was becoming more incapacitated. She called the doctor when my fever had rose to 104. They called for an ambulance and I was rushed to the hospital. After arriving my temp was taken again and it had reached an alarming 107. The quickly buried me in ice. I was delusional and hallucinating. Things were coming to me in waves. I know now I had a severe kidney infection and my kidneys were shutting down. Talk of dialysis was becoming a reality. I also had full blown pneumonia. To say the least I was in bad shape and beaten down. I feared for my baby and myself, I did not think either of us were going to make it through. Three days of being packed in ice and my fever started to waiver but the damage was done and I was not getting better. They had tried all the antibiotics that they could while I was pregnant to no avail. My fever loomed around 103 and stayed. My outlook was grim and the doctor was running out of options and time.
It was the night before Christmas Eve and the diagnosis was not good. He told me he did not expect me to make it through the night as my entire body was shutting down that even if they terminated the pregnancy I would most likely not survive either, but I told him that was not an option I had come to far and if I was going to die I wanted to do it at home around my family not in that hospital. He put up a huge fight and kept saying no, but I was not having it. I signed an AMA and they released me. As I was getting ready to be wheeled out he came back and said he could not let me go with nothing, not to just go home without one last ditch effort. So, he asked if I would be willing to take an antibiotic that could possibly have devastating results but may save "my life" not the baby, I was confused and upset. He had to explain to me that this was it, he did not expect the baby to make it but he wanted to try and save me. After a long winded debate I agreed to take deadly doses of vancomycin to try and save my life.
At home everyone gathered and my nurse prepared my treatment, it was going to be a long night indeed. I had 8 of the these balls to be infused with, which were to be given every two hours back to back. The thoughts running through my head were paralyzing. I now know what it is like to be on my death bed and the feelings that overwhelm you and consume you. It was a very dark night and I did not see the light at the end of the tunnel. I laid on the couch and took each of my treatments, I could feel my body being overrun with poison. That is what it felt like, pure poison that was going to kill my baby boy and me. I remember I did not want to sleep I was so afraid I was not going to wake up and that it would all be over. I have never prayed as hard as I did that night, I begged for mercy. I was not ready to go.
I could see the tears of everyone, I could feel my own, it was coming. I remember the rush of warmth that washed over me and the need to close my heavy eyes and I did. The fear washed away from me and I thought this is it, its over. I was dying inside, I did not want to go but accepted my defeat and fell asleep.
Much to my shock I woke up hours later and all the treatment was done. I was shouting in my head " I made it! I am alive! The baby is alive!". I prayed so hard in those first few minutes of being awake, thanking God profusely for saving me and my boy. It was a miracle, plain and simple and I will never forget it. Everyone was shocked but happy.
I stayed sick and constantly sick but I made it through all of it. I went on to deliver him with minimal complications. Our baby boy had arrived and the thought was that everything was instantly supposed to be over as soon as I delivered....WRONG! They had taken my PICC line out right before I delivered so I was not being fed anymore but I still could not eat afterwards. I was still sick for days afterwards and still having to take zofran. It finally all subsided and I was sent home with our new bundle of joy.
It was short lived because a new battle awaited me yet again. I was taken to the hospital three times by ambulance during the first three weeks at home. Only for them to send me home telling me I was having panic attacks. I knew something else was going on but I just didn't know what it was. My chest felt like an elephant was sitting on it and my neck and right arm were cramped and aching. My heart felt like it was going to explode. Finally, on the fourth run by ambulance to the er I got a doctor that asked me if my right arm was hurting me and I said yes, why? He immediately called for the nurse and said we were going to surgery right away. He knew it was my gallbladder, it was rupturing. It was rupturing as he was taking it out of me, he said I was so lucky I got him that day. I also had an upper and lower gi done at the time and they had to repair six holes in my esophagus and stomach from not eating or drinking during the pregnancy. After all that I was sent home again and everything was good for a few months minus the HUGE adjustment to not having a gallbladder and the after effects of not eating or drinking for 9 months.
I got another large cyst on my only remaining ovary and it was big, I knew what that meant...another surgery to drain it. So again back to the hospital to have it drained by laprascopy. It wasn't even two months later I got another one and it was even bigger and it was ready to rupture. So this time going in I was under the advisement that I needed an emergency total hysterectomy. I did not want this as I had not even had time to digest the thought, but I felt pressured into this decision and went with it. So I was given a total hysterectomy and left with nothing. My body went through major shock and it took me a long time to adjust.
I also had to have a bladder sling put in because the tendon to my urethra had been severed during childbirth. TRUST ME when I say this was no bueno!! When this failed it had to be redone...again no fun! Wearing a catheter and not being able to "go" was extremely scary.
Besides all the surgeries for various things my teeth had also started to fall apart literally. I would bite into something and they would crumble. I was in so much pain it was pure hell on earth. I eventually had to have all my teeth pulled on the top and almost all on the bottom except four. It was excruciating pain.
All of the things that I had to endure during and after that pregnancy was almost more than I could handle. Not just for me but for my family as well. The constant carrying for me had taken its toll on them as well. Depression was high during this time and my outlook was not great. The only thing that brought me any joy was my children. Knowing how much I loved them pushed me through those dark days. I know I did not go into alot more detail about my feelings and experience with this but it is really a place I do not wish to go back to ever, the emotions associated with that time are to much to bare. I hope that everyone who reads this gets a better understanding of what this was like and if anyone woman they know that has this needs all the love and support she can get from you!
For years before my diagnosis I had always wondered if I had Lupus since I fit so many of the symptoms. I knew that Lupus could imitate some of the most horrific of diseases. Year after year, doctor after doctor told me that I was being dramatic or over reacting that there was nothing wrong with me. They dismissed all the symptoms that I was presenting them with.
Then in 2010 we moved back to Louisiana and shortly after I got a rash around my upper arm. It was just a few red bumps that looked more like welts than anything. It did not itch and it did not hurt but it would not go away with anything I took or put on it. At the same time my lymph nodes all over my body became swollen and grossly enlarged. This is also when I discovered a tick on me.
Within two weeks the "rash" had spread to my right arm in the exact same place. It was like a mirror image to my left arm. Again it did not hurt nor did it itch. My health was going downhill. I kept getting sick with colds that would keep me down for months. My life had consisted of biking from 7am till the afternoon to not being able to get out of bed every morning. It seemed like every time I was doing something healthy and active for myself and things I enjoyed something would go seriously wrong.
I went to my PCP several times for all of this, I was told it was nothing every time, especially the rash! He kept giving me antibiotics to try and bring my nodes down but I would only seem to get worse on them or they did nothing at all. So every time I would go back and tell him that I was getting worse or it was nothing he started to get very frustrated with me till he finally told me he could not help me. I sat outside his office that day and I cried and cried. I felt like everyone around me did not believe me, but I did not understand how they couldn't, it was obvious my lymph nodes were very engorged and the rash was there...SO WHY DON'T YOU BELIEVE ME!! How was I "making" this up???
So a friend referred me to her PCP and off I went to see him. He seemed eager at first to help me and started off with some labs that I had not had. He tested me for thyroid issues and that sort of thing. I have to admit I was pretty dead set that my thyroid was part of the problem and if he would only run the advanced testing he would see. Alot of women in my family even immediate family has issues with their thyroid so it seemed a likely scenario, plus I did show symptoms of it. Over six months went by of him telling me the same thing my previous doctor did. I was defiantly getting more and more upset by the day at this point and so was he. Till one appointment I guess he had enough. He yelled at me and pretty much told me I was crazy and there was nothing wrong with me and walked out on me! I was a total mess. I sat there on the table bawling like a baby when his nurse came in to try and smooth things over but with the door cracked and me seeing him pacing up and down the hallway mumbling under his breath I said everything as loud as I could. I let that nurse have everything I wanted to say to his face but he refused to come back in. That day was a wake up call for me.
I was even more determined to find out what was going on with me after that incident with my PCP. Mind you this whole time I still had the rash and and my lymph nodes were still swollen all over my body. I finally decided to take a different route and went to see an allergist thinking maybe something I was being exposed to at home or something I was taking was causing all this. I went to see this wonderful man and he instantly took me under his wing.
I told him of all the troubles I have had with two PCPs and countless "clinic doctors" along the way. At this point I had also developed two other pretty significant symptoms that were causing me a great deal of misery. I was having difficulty swallowing, choked on everything and my stomach (bowels included) were very erratic and painful. He could see the physical part...FINALLY! He was very keen on helping me try to find answers and started running auto-immune tests and allergy tests.
My allergy test was pretty normal. I was allergic to a few things but nothing extraordinary or noteworthy. My auto immune tests came back to be somewhat unusual and he was unsure how to take the results so he sent me to see a rheumatologist in the next city. After meeting with this doctor one time I knew that I loathed this man. He was arrogant and an ass but I had no choice he was the only one in a 300 mile radius for me to see. He ran more in depth tests and sent me for a nuclear bone scan.
When I went back for the results he told me I had fibromyalgia, a blood clotting auto-immune disease and CFS and he would give me some meds to try and control symptoms. He told me that fibro was all in my head and I could overcome it! I was in udder awe of is ignorance. The results of the nuclear bone scan showed I had a broken rib and signs of osteoporosis and arthritis. Months earlier I had lost my balance and nicked my side on the counter and had a bruise there forever but did not put two and two together that I was short of breath to. Could not believe that I had a broken rib for months and did not know it.
During this time I went back to see my allergist and showed him all the results, he to was unhappy with the diagnosis and was worried I may have lymphoma or cancer somewhere else. So he ordered a PET scan and decided to biopsy the lymph nodes in my neck. I can not tell you how excited I was for someone to finally take me seriously enough to proceed with "real" tests. Well like everything else the PET scan came back negative for cancer and the biopsy showed negative for lymphoma. I was supposed to have additional tests done to the biopsy but my allergist needed my rhemo to sign off to have them done and he refused to do it so the samples were destroyed and the tests never run. To say the least me and the allergist were fuming mad. I went back to the rhemos office and let him have it in front of all his patients, to say the least they escorted me from the building. I was furious that I took a huge risk having my neck cut into and had major surgery for him not to sign off on a few tests that was not going to hurt anything at all!
Well it was back to square one and I was no better off than I was before except knowing I had a few more diseases to add to the ever growing list of ailments. For months I did nothing, I felt defeated and belittled. I could no longer ignore what was going on after seeing my gastrologist a few months later. I had an upper and lower GI done like I do every year because of other issues and he found that I had several infections in my stomach and intestines. Plus my esophagus needed to be dilated so I could swallow better. We could not get my bowels under control it was always from one extreme to another and it was excruciating to endure.
During one of my follow ups he told me that I needed to see an infectious disease specialist because he did not think these infections I had were very common and he did not understand how they got to my intestines and stomach to begin with, so off I went. I have to admit I did not have high hopes entering the ID doctors office. I was already beat before I met him but I went along with the flow.
After spending ten minutes with this man I knew great things were coming. His intelligence had me mesmerized and his ADD was mind bending. His brilliant self turned to me and said "Has any doctor ever thought of just biopsying this rash?" with those simple words I just wanted to smack my forehead and say "DUH"! Why didn't I think of this??? He knew I was in pain from head to toe my symptoms were worsening and I had no relief. The photo-sensitivity the pain that was everywhere, the swollen glands, the rash, the gastro issues, the migraines the speech issues, the memory issues, it was all coming together. He ran more labs and sent me to a dermatologist to do the biopsy and vowed to find answers for me.
Well after waiting a harrowing week for the results of the biopsy she finally called with the results. It was 100% no doubt Lupus. I was so relieved to finally have an answer that I did not comprehend what exactly that meant with all my kidney problems and all the other symptoms I was having, but I was ecstatic to have an answer!
A new rhemo came to a neighboring city so my ID doctor sent me to him to follow up with the Lupus diagnosis. He was a young doctor and seemed knowledgeable but I felt like I was being run through a mill. He saw the diagnosis and changed my dosage for blood thinners because of the two blood clotting diseases I had and said here is your prescriptions and sent me on my way.
Within a couple of weeks of being on the Lupus medication I started to see a difference. My hair, skin and nails started to come back to life again. My lymph nodes went down a little but never went away. My rash cleared up and that was that. I thought I was home free and learned everything I could about my lupus and how it was going to effect my life.
It took three years and numerous doctors to get them to find an answer.
Then in 2010 we moved back to Louisiana and shortly after I got a rash around my upper arm. It was just a few red bumps that looked more like welts than anything. It did not itch and it did not hurt but it would not go away with anything I took or put on it. At the same time my lymph nodes all over my body became swollen and grossly enlarged. This is also when I discovered a tick on me.
Within two weeks the "rash" had spread to my right arm in the exact same place. It was like a mirror image to my left arm. Again it did not hurt nor did it itch. My health was going downhill. I kept getting sick with colds that would keep me down for months. My life had consisted of biking from 7am till the afternoon to not being able to get out of bed every morning. It seemed like every time I was doing something healthy and active for myself and things I enjoyed something would go seriously wrong.
I went to my PCP several times for all of this, I was told it was nothing every time, especially the rash! He kept giving me antibiotics to try and bring my nodes down but I would only seem to get worse on them or they did nothing at all. So every time I would go back and tell him that I was getting worse or it was nothing he started to get very frustrated with me till he finally told me he could not help me. I sat outside his office that day and I cried and cried. I felt like everyone around me did not believe me, but I did not understand how they couldn't, it was obvious my lymph nodes were very engorged and the rash was there...SO WHY DON'T YOU BELIEVE ME!! How was I "making" this up???
So a friend referred me to her PCP and off I went to see him. He seemed eager at first to help me and started off with some labs that I had not had. He tested me for thyroid issues and that sort of thing. I have to admit I was pretty dead set that my thyroid was part of the problem and if he would only run the advanced testing he would see. Alot of women in my family even immediate family has issues with their thyroid so it seemed a likely scenario, plus I did show symptoms of it. Over six months went by of him telling me the same thing my previous doctor did. I was defiantly getting more and more upset by the day at this point and so was he. Till one appointment I guess he had enough. He yelled at me and pretty much told me I was crazy and there was nothing wrong with me and walked out on me! I was a total mess. I sat there on the table bawling like a baby when his nurse came in to try and smooth things over but with the door cracked and me seeing him pacing up and down the hallway mumbling under his breath I said everything as loud as I could. I let that nurse have everything I wanted to say to his face but he refused to come back in. That day was a wake up call for me.
I was even more determined to find out what was going on with me after that incident with my PCP. Mind you this whole time I still had the rash and and my lymph nodes were still swollen all over my body. I finally decided to take a different route and went to see an allergist thinking maybe something I was being exposed to at home or something I was taking was causing all this. I went to see this wonderful man and he instantly took me under his wing.
I told him of all the troubles I have had with two PCPs and countless "clinic doctors" along the way. At this point I had also developed two other pretty significant symptoms that were causing me a great deal of misery. I was having difficulty swallowing, choked on everything and my stomach (bowels included) were very erratic and painful. He could see the physical part...FINALLY! He was very keen on helping me try to find answers and started running auto-immune tests and allergy tests.
My allergy test was pretty normal. I was allergic to a few things but nothing extraordinary or noteworthy. My auto immune tests came back to be somewhat unusual and he was unsure how to take the results so he sent me to see a rheumatologist in the next city. After meeting with this doctor one time I knew that I loathed this man. He was arrogant and an ass but I had no choice he was the only one in a 300 mile radius for me to see. He ran more in depth tests and sent me for a nuclear bone scan.
When I went back for the results he told me I had fibromyalgia, a blood clotting auto-immune disease and CFS and he would give me some meds to try and control symptoms. He told me that fibro was all in my head and I could overcome it! I was in udder awe of is ignorance. The results of the nuclear bone scan showed I had a broken rib and signs of osteoporosis and arthritis. Months earlier I had lost my balance and nicked my side on the counter and had a bruise there forever but did not put two and two together that I was short of breath to. Could not believe that I had a broken rib for months and did not know it.
During this time I went back to see my allergist and showed him all the results, he to was unhappy with the diagnosis and was worried I may have lymphoma or cancer somewhere else. So he ordered a PET scan and decided to biopsy the lymph nodes in my neck. I can not tell you how excited I was for someone to finally take me seriously enough to proceed with "real" tests. Well like everything else the PET scan came back negative for cancer and the biopsy showed negative for lymphoma. I was supposed to have additional tests done to the biopsy but my allergist needed my rhemo to sign off to have them done and he refused to do it so the samples were destroyed and the tests never run. To say the least me and the allergist were fuming mad. I went back to the rhemos office and let him have it in front of all his patients, to say the least they escorted me from the building. I was furious that I took a huge risk having my neck cut into and had major surgery for him not to sign off on a few tests that was not going to hurt anything at all!
Well it was back to square one and I was no better off than I was before except knowing I had a few more diseases to add to the ever growing list of ailments. For months I did nothing, I felt defeated and belittled. I could no longer ignore what was going on after seeing my gastrologist a few months later. I had an upper and lower GI done like I do every year because of other issues and he found that I had several infections in my stomach and intestines. Plus my esophagus needed to be dilated so I could swallow better. We could not get my bowels under control it was always from one extreme to another and it was excruciating to endure.
During one of my follow ups he told me that I needed to see an infectious disease specialist because he did not think these infections I had were very common and he did not understand how they got to my intestines and stomach to begin with, so off I went. I have to admit I did not have high hopes entering the ID doctors office. I was already beat before I met him but I went along with the flow.
After spending ten minutes with this man I knew great things were coming. His intelligence had me mesmerized and his ADD was mind bending. His brilliant self turned to me and said "Has any doctor ever thought of just biopsying this rash?" with those simple words I just wanted to smack my forehead and say "DUH"! Why didn't I think of this??? He knew I was in pain from head to toe my symptoms were worsening and I had no relief. The photo-sensitivity the pain that was everywhere, the swollen glands, the rash, the gastro issues, the migraines the speech issues, the memory issues, it was all coming together. He ran more labs and sent me to a dermatologist to do the biopsy and vowed to find answers for me.
Well after waiting a harrowing week for the results of the biopsy she finally called with the results. It was 100% no doubt Lupus. I was so relieved to finally have an answer that I did not comprehend what exactly that meant with all my kidney problems and all the other symptoms I was having, but I was ecstatic to have an answer!
A new rhemo came to a neighboring city so my ID doctor sent me to him to follow up with the Lupus diagnosis. He was a young doctor and seemed knowledgeable but I felt like I was being run through a mill. He saw the diagnosis and changed my dosage for blood thinners because of the two blood clotting diseases I had and said here is your prescriptions and sent me on my way.
Within a couple of weeks of being on the Lupus medication I started to see a difference. My hair, skin and nails started to come back to life again. My lymph nodes went down a little but never went away. My rash cleared up and that was that. I thought I was home free and learned everything I could about my lupus and how it was going to effect my life.
It took three years and numerous doctors to get them to find an answer.
My story with Lyme is a never ending work in progress, but here it goes from the beginning. I had been bit by ticks plenty when I was younger. I was always playing in the woods at my Aunt's farm by Bull Shoals Lake. Throughout my life I have endured alot of pain and alot of different things that I did not compile to be just one disease in itself. As you have read above I have been diagnosed and treated for alot of things. I think that they all had something to do with me having Lyme Disease.
In 2010 after moving back to Louisiana I was hiking in the back woods by our new house and me and two of my kids came home to find ticks on us. I already had a rash on my arm that I was not aware it was Lupus and many other symptoms. Looking back now I know that all my symptoms intensified greatly after this. After a few months my symptoms had become so bad that I was wondering if I was slowly dying and no one was going to figure it out. I started to notice my speech being impaired, not able to concentrate or stay focused, insomnia worsened, tremors, shaking, dead limbs, the list goes on and on.
I saw many doctors as you read above in the "lupus" section, but nothing was getting better. I did do well on Plaquenil for my Lupus for a few months but my health started to decline rapidly again. I again went back to my ID dr and begged him to find out more. I noticed a change in him after this visit. He to began to shrug me off thinking its only my lupus and I need to accept the fact that there is nothing more. I just gave up at that point, I started thinking maybe this all was my lupus and nothing more, but deep down I knew better...I knew my body.
Months of not doing anything, I was on Facebook one evening and read a post from a friend that I went to high school with. It was a link to the documentary "Under Our Skin". We were chatting back and forth and she insisted I watch it, so I did. Words can not describe the emotions running through my body when I watched this. I was bawling like a baby through the whole thing, saying "This is me, this is me!" After watching I texted her and told her my experience. Soon after this I was on board to get the testing from Igenex labs. This was huge for me since they do not take insurance and it was alot of money out of pocket. I was not even sure I had it and here I was going to spend money that I knew my family needed in order to find out. It was a tough decision for me but I am so glad that I did this for myself.
When the tests came back, it was positive across the board, I even tested CDC positive (and I hear that is VERY hard to do)! I was relieved and saddened all at once. I had read so much on Lyme's Disease while I was waiting on those results that I knew what I would be in store for. If it weren't for a chance reconnection with an old friend I would still be searching for answers that may have killed me waiting.
In 2010 after moving back to Louisiana I was hiking in the back woods by our new house and me and two of my kids came home to find ticks on us. I already had a rash on my arm that I was not aware it was Lupus and many other symptoms. Looking back now I know that all my symptoms intensified greatly after this. After a few months my symptoms had become so bad that I was wondering if I was slowly dying and no one was going to figure it out. I started to notice my speech being impaired, not able to concentrate or stay focused, insomnia worsened, tremors, shaking, dead limbs, the list goes on and on.
I saw many doctors as you read above in the "lupus" section, but nothing was getting better. I did do well on Plaquenil for my Lupus for a few months but my health started to decline rapidly again. I again went back to my ID dr and begged him to find out more. I noticed a change in him after this visit. He to began to shrug me off thinking its only my lupus and I need to accept the fact that there is nothing more. I just gave up at that point, I started thinking maybe this all was my lupus and nothing more, but deep down I knew better...I knew my body.
Months of not doing anything, I was on Facebook one evening and read a post from a friend that I went to high school with. It was a link to the documentary "Under Our Skin". We were chatting back and forth and she insisted I watch it, so I did. Words can not describe the emotions running through my body when I watched this. I was bawling like a baby through the whole thing, saying "This is me, this is me!" After watching I texted her and told her my experience. Soon after this I was on board to get the testing from Igenex labs. This was huge for me since they do not take insurance and it was alot of money out of pocket. I was not even sure I had it and here I was going to spend money that I knew my family needed in order to find out. It was a tough decision for me but I am so glad that I did this for myself.
When the tests came back, it was positive across the board, I even tested CDC positive (and I hear that is VERY hard to do)! I was relieved and saddened all at once. I had read so much on Lyme's Disease while I was waiting on those results that I knew what I would be in store for. If it weren't for a chance reconnection with an old friend I would still be searching for answers that may have killed me waiting.
I was diagnosed with Fibro the first time back in 2006. The chronic episodes I was having turned into everyday adventures. It is hard to know what symptoms go with what since they all connect in some way or another. My doctor back in '06 never did anything about it but give me muscle relaxers, pain killers and Imitrex injections for my migranes.
I suffered for years until last year when my doctor again told me I had fibro and started me on different medications. At this time I did not know I had Lupus. I did know I had two auto-immune diseases and he also diagnosed me with CFS.
I had almost all the symptoms and it was a constant battle everyday to get out of bed. I am so used to pain that a normal person would think they were dying. I do not think I will ever know what "normal" is.
My Symptoms:
IBS, Chronic Fatigue, Migraines, Anxiety, Chemical Sensitivity, Abdominal Cramps, Pelvic Pain, Pain All Over, Bloating, Hair Loss, No Coordination, Vertigo, Nausea, Insomina, Twitching, Brain Fog, Restless Sleep, Body Temp Off, Stiffness, Loss of Feeling and many more.
I suffered for years until last year when my doctor again told me I had fibro and started me on different medications. At this time I did not know I had Lupus. I did know I had two auto-immune diseases and he also diagnosed me with CFS.
I had almost all the symptoms and it was a constant battle everyday to get out of bed. I am so used to pain that a normal person would think they were dying. I do not think I will ever know what "normal" is.
My Symptoms:
IBS, Chronic Fatigue, Migraines, Anxiety, Chemical Sensitivity, Abdominal Cramps, Pelvic Pain, Pain All Over, Bloating, Hair Loss, No Coordination, Vertigo, Nausea, Insomina, Twitching, Brain Fog, Restless Sleep, Body Temp Off, Stiffness, Loss of Feeling and many more.
I am told that once you have one, they seem to keep coming. I have the blood clotting auto-immune and a genetic blood clotting disease. Both of these together with hysterectomy and on HRT puts me at over 200% likely to have a major blood clot.
My second auto immune has yet to be 100% confirmed but it is believed that I have auto-immune arthritis. RA runs in my family so I am assuming that this is what time will tell.
I also have Lupus which is also an auto immune, so technically I have three.
My second auto immune has yet to be 100% confirmed but it is believed that I have auto-immune arthritis. RA runs in my family so I am assuming that this is what time will tell.
I also have Lupus which is also an auto immune, so technically I have three.
This is a link to an auto-immune support group that I am with on Facebook. Alot of great people there and a wonderful enviroment to talk to people in your same experience. GO CHECK IT OUT!
https://www.facebook.com/groups/autodisorderssupport/?hc_location=stream
https://www.facebook.com/groups/autodisorderssupport/?hc_location=stream
See story on Fibro :)