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Hi – I wasn’t trying to be evasive, but rather trying to not give TMI. I am happy to share my story. Good questions and you obviously are familiar with c-sections. If you don’t have time to read my LONG story, skip down to the last paragraph to read about why my baby died. I hope that you learn about incarcerated uterus’ and pa__s along the information so that women are better informed.
In addition to my angel in heaven, I have a 5 year old angel here on earth. About 2 ½ years before I was pregnant with my first, about 23 years old, I had severe pain in my right groin area and it usually came around the time of my period, sometimes with a fever. The pain progressively intensified and I began to seek help. The first diagnosis was at my University because I did not have insurance and they said it was kidney stones because I also had lower back pain. I remember it hurting so bad I had to request to take one of my last finals standing up. I ended up in the emergency room about 2 weeks before the company I interned for formally hired me w/ benefits. I had an ER bill, doctor bill, radiologist bill, CT scan bill, etc., etc. In that visit, well over $8,000 later, I was told that I had cysts in my ovaries and to go see my gynecologist. I went to the gynecologist and was put on birth control to attempt to eliminate my periods. I did that for 2 – 3 months and the pain persisted so I got off of the pill. Then I went to my primary doctor who felt my groin area and found some swollen lymph nodes, which scared me, but she said “ah you’re too young, you probably have an infection or something”. I kept calling my primary doctor every time it hurt, which was about once a month when it got really intense. She ran some x-rays - a few different ones. She thought it was something menstrual w/ my ovaries, but I kept saying it’s in my groin clearly my ovaries are not in my groin. She then told me that it was menstrual and to “suck it up”. So I did. I was embarra__sed to call the doctor or to tell anyone because people thought I was a hypochondriac. It finally got so bad that I started faxing the doctor and saying that I could feel the pain coming again and I was scared PLEASE help me. The next month I sent another fax and told her that it hurt so bad I thought it could be cancer and that if she could not help me to PLEASE refer me to someone else. So she ran another set of x-rays. Then about a month later I was reunited w/ the love of my life after about 4 years and we instantly fell in love again and I was pregnant within a month. Wow what a shock that was. Boy was I scared to tell my mom and brother (my dad pa__sed away in ’94 and my family is old school Catholic). But nonetheless, something inside just felt right, like this baby was meant to be and I was happy. I was also thinking, well since my pain is menstrual it won’t hurt for at least 40 weeks. Into my 5th month I started having pain again. My OBGYN and nurse pract_tioner said “oh every pregnancy is different and you will feel some weird stuff down there”. So I sucked it up again. The next diagnosis was ligaments in my groin area which seemed normal since I was pregnant and everything was moving around. I was referred to physical therapy, which was torture because I could not even lift my leg to do the exercises, which further frustrated me and made me cry. Eventually I stopped crying over the pain. My pain tolerance was high. I got to a point where I could not sit up so my husband (we got married) would drive me to work and I would stand a lot when I was typing at my desk. In my 32nd week of pregnancy after a week of Tylenol w/ codeine and still sleepless nights, I went in for a shower and to try to suck it up another day. My husband finally said this is enough. He called the OBGYN, but he was on vacation. The Nurse Pract_tioner had me come in to eliminate the risk of premature labor. This was on a Monday and the first time they did a hand examination in my pregnancy, which discovered a ma__s about the size of an orange. By Thursday at 5pm, after two biopsies, many CT scans, and ultra sounds, I was in the OR giving birth via c-section. I always new my baby was fine. I never thought the cancer spread to him, but I thought it may have spread all over my body since it had been so long. The doctor’s did not find the tumor in my groin and wrapped around my pelvic bone because the tests they were running were for soft tissue/organs not bones and they were looking in the wrong area. Sure enough my little angel was born as healthy as can be. A little guy, but healthy. What an angel. 10 days later I was admitted to the hospital next door to the women’s hospital where my son was in the NICU and I immediately started chemo therapy. No surgery, my tumor was inoperable because of the location. I had Chemo therapy for 1 year. Every 3 weeks I went to the hospital for 3 – 4 days to get my chemo. I took a 2 – 3 month break to get 31 intense Radiation treatments. I had Ewing’s Sarcoma (normally found in adolescent boys) in my pelvic area, which is the worst place you can get it. Imagine all the areas the radiation hit and I had a new born. Anyway, I thank God everyday for keeping me here to enjoy my son. I cried every time my son did anything for the first time and definitely when my hair finally grew back and he pulled on it. I didn’t know if I would be there to see those special moments. My 5 year old is my life marker. When I was going through Chemo I was put on the pill w/out blank pills to protect my ovaries. When I had radiation I was told about all the awful potential side effects one of them being that both my ovaries may not function when radiation was complete. I was given about 2 days to decide whether I wanted to harvest eggs. I didn’t realize that the eggs actually had to be fertilized and I just wasn’t ready to make that decision “where does life begin”. So my husband and I decided that we would leave it in God’s hands and if it was meant to be he would bless us with another baby. I started regretting that decision when my son was about 3 years old. I kept thinking that if all that drama had not occurred I would have loved to have my kids only be 2 years apart. 1 year ago I had a surgery to correct some radiation damage. 3 months after my surgery and 1 month after trying to conceive, we were pregnant! This is after a fertility expert told me that I had a 1% chance to conceive. My husband and I were so excited about that 1% chance because 1% is 1%. The doctor was a little confused about our excitement, but whatever. So on August 1st of last year I found out that I was 4 weeks pregnant. OMG! We were in complete disbelief and totally happy. We didn’t tell many people. My OBGYN even cried and said it was a miracle. We took it one day at a time had at least 6 ultra sounds. The baby was progressing beautifully. Then in October I started feeling like I could not completely empty my bladder. I would go to the bathroom ridiculous amounts of times throughout the day, it was just not normal. I told the doctor and he said “what a small price to pay for being pregnant”. After all we had ultra sounds and heart monitors that said the baby was fine, so I trusted them. In one of my previous appt’s w/ the Nurse Pract_tioner, the same one that found my tumor, she commented that my UTERUS WAS REALLY TILTED and that we may not be able to hear the heartbeat, but of course we did and it was strong. My cancer doctor and my OBGYN were concerned about the cancer monitoring not my tilted uterus. On November 2nd I was told that state regulated AFP tests for pregnant women came back high. On November 3rd, while my husband was on travel I went to see a genetic counselor, had an extensive ultrasound and let them do an amnio. From what they could see, the baby was fine, but the amnio would provide more precise information. Through the weekend I kept telling my husband that I did not feel the baby moving anymore. We bought one of the over the counter heart monitors to check on the baby. My husband swore he heard the heart beat, but I heard nothing. I called nurse connection on Sunday night and they said it was too early to feel the baby. I insisted that I had been feeling him moving for weeks. You could tell they were annoyed w/ me and said I could go into the Women’s hospital for an evaluation that evening “if I wanted to”. I told them that if they were not concerned then I would just wait for my doctor in the morning. My doctor was on vacation so I saw the nurse pract_tioner again. She was annoyed w/ me too and said “I guess the only thing I can do is have you come in to the office to let you hear the heart beat”. So my boss drove me in because I was too upset to drive. Instead of hearing the heart beat we did an ultra sound. I was over 18 weeks pregnant and she was putting the ultrasound wand on my pubic bone to see the baby. She said, “wow, he’s really low I’m on your bone”. I asked her if that was dangerous and why was he so low. She said that it was fine, he would move up and to make sure I drank a lot of water when I went to my next scheduled ultra sound that following Monday, November 13th so that the baby would be pushed up. This is the same nurse pract_tioner that said “wow your uterus is really tilted”. So for my birthday on Monday, November 6th I saw my baby moving around and saw a healthy heart beat, what a relief. For my b-day I only asked God for my baby to PLEASE be healthy. Mind you I was still waiting to hear back on the amnio results. I have not celebrated my b-day since my cancer because I now celebrate w/ my 5 year old son on his b-day November 1st since he is my marker. By Thursday I received “the call” from the genetic counselors and it was great news, the test results were in and the baby was 100% ok! Oh my goodness what a relief. My miracle baby was just fine. I could actually breathe again. So, now that I knew everything was fine, my husband went back on travel and I took my 5 year old to the scheduled ultra sound 4 days later so he could see his baby brother. My son use to pray for a baby before I was pregnant. I always told him it was up to God, especially since my chances were so slim. Then when I was pregnant he thanked God for his brother. During the ultra sound after a while of poking around and making me walk around the block w/ my 5 year old and completely clueless, I was put in an office and was called on the phone by nurse pract_tioner to be told that my baby had no heart beat. All this while my 5 year old stared me in the eye. I just quietly said “ok”. I had a scheduled appt. w/ my OBGYN that same day and was asked to keep that appt. I cannot explain the devastation that overwhelmed my body. I don’t know how, but I did not cry a tear while my son was w/ me. I took him to my mom’s and drove off to the second appt. My son also suffered the loss of his longed for brother. But he still prays to God to thank him, except now he thanks him for his angel brother in heaven.
Now the reason for the Cla__sical C-Section: Because of all the radiation damage and reconstruction surgery I had earlier that year, labor and/or a D&C was not an option. A c-section was required. My c-section was scheduled 3 days after finding out my baby died. While I was being prepped for surgery my OBGYN introduced me to a women’s cancer specialist (my cancer was not a women’s cancer) that would be joining him in surgery along with 3 other doctors. They had decided that since I never had surgery for my cancer and they did not know why the baby died they wanted me to authorize a cla__sical c-section to view as much of my organs as possible. Basically they wanted to see if I had cancer, cancer damage, or radiation damage. The cancer doctor was there in case any one of these was present and to operate since I was already open. I of course said yes, which only added grief to the whole situation since I was already devastated about losing my baby and now they want to see if I have cancer. Then I was told that I could see and hold the baby if I wanted, which I did not know was an option. I of course accepted. My baby was small, but he was complete. 10 fingers, 10 toes, eyes, nose, mouth, everything. He was perfect. When they opened me up and cut into the sac it exploded, literally. Fluid went everywhere. My baby was straight up and down – vertical. He had gotten stuck between my pubic and tale bone. This is where the whole TILTED UTERUS comes in. Normally in pregnancies, tilted uterus’ correct themselves, flip over, and rise up such as mine did w/ my first angel. 1 in 3,000 will NOT correct themselves and an “incarcerated uterus” is created. This instance is VERY RARE. So rare that my OBGYN had never witnessed an incarcerated uterus and therefore did not recognize the symptoms to help me. Women w/ TILTED UTERUS’ OR RETROVERTED UTERUS’ must be monitored early to confirm that the uterus corrects itself and rises. The saddest thing to me is that had we known in time, they might have been able to pop the baby up out of the cavity with the doctor’s hand. My symptoms were: feeling like I could not empty my bladder, frequent urination (more than just the pregnancy frequency), pain, and pressure. Once I knew what happened I easily found information on the subject and educated my doctor on it. 3 days after I brought my doctor information about incarcerated uterus’ he was able to help another woman w/ a similar problem. Maybe that was the purpose of my angel’s journey?
My apologies for the long story and thank you for reading. Please make your friends aware of this danger for women w/ tilted/retroverted uterus’. I was that 1 in 3,000.
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