Where to begin... pregnancy is supposed to be the most exciting time in a woman's life. I was 30 years old by the time I was healthy enough and my body decided that I would be able to carry a child. Born with PCOS, and struggling from day to as it was, pregnancy for many years only seemed like something that would be a dream. Before even attempting to get pregnant, I did a full year's worth of research on the medications and injection that it takes to keep me alive, seeing what the affects would be on a potential fetus, and if the benefits would outweigh the risks if I were to become pregnant. I knew everything there was to know about my condition, medications and living with PCOS while being pregnant, all it took was getting pregnant.
In May of 2008, we were blessed to find out we were having a baby! It was so much easier than we ever imagined to get pregnant. Women with PCOS many times struggle with infertility, and many never go on to have children. In only two months of trying, we were blessed with a baby on the way. In the 38 1/2 weeks I was pregnant, I did everything right. I gave up caffeine, ate healthy, took my vitamins, and went to every prenatal appointment. I did continue taking my medications for PCOS, even against the doctor recommendations, because I believed that the benefits outweighed the risks. My baby continued to grow and thrive, and met every milestone. I even lost weight.
On February 3rd of 2009, I was 38 1/2 weeks pregnant. Around 10pm, I'd been having a horrible headache for hours. I took my blood pressure at home, and it was 183/102. I called the on-call line immediately. I was advised by the doctor on call to be admitted for a fetal NST due to my blood pressure being so high. Off to the hospital we went on the coldest night of the year. I changed into my hospital gown, and was promptly given a cup to give a urine sample. I went to the bathroom, and tried with all I had to give one, and had absolutely nothing. I had gone to the bathroom right before I came to the hospital. The nurse, frustrated, took my cup, and strapped me down with the monitors to the bed. Within 30 minutes of laying in the bed, I felt a "pop", and then a trickle of fluid. My water had broken.
I told the nurse, "My water just broke," as I felt the fluid gushing from me, and she looked at me and said, "I think you probably peed on yourself." If I didn't have urine a few minutes ago, how in the world did I have that much 30 minutes later? I ignored the ignorant remark, but I shouldn't have. It should've been my warning sign of things to come. She took a sample of the fluid, and surely enough it was amniotic fluid. I was now in active labor at 11:30pm on February 3rd, 2009.
I was promptly admitted, and taken to a room. They asked me if I wanted my epidural then, and was given an IV. I told them I wasn't in any pain at the current time, and didn't see any need for an epidural at that time. Things were going pretty well. The only thing that was irking me, was I was having to lay on wet pads, as every time I'd have a contraction, I'd leak more amniotic fluid, and no one would help change the bed padding.
Around roughly 4am, the pain of the contractions started to become a little more intense, and I thought it might be a good idea to get my epidural. They called for the anasthesiaologist. It took over an hour for one to show up. By this time, I was hurting badly. It took 7 different tries of them fully threading it in and out of my spinal column and over an hour to get it in. It was extremely painful, not to mention, I wasn't allowed to move at all during this time. I was terrified it wasn't going to work. Little did I know, it wasn't.
It was finally in, and I was feeling some relief. It was around 6am, and my middle sister, Jennifer had arrived. Everyone was exhausted, and trying to get a little sleep, Jen stayed with me until around 8am when she had to go to work. I began to start feeling discomfort in my stomach. The bands they had around my belly for the fetal monitors were cutting into my belly and hurting me. I called for a nurse to help me, but my calls went unanswered. Thirty minutes later, and two calls later, a nurse finally comes in, and shoves a washcloth under the area that is blood red and irritated, and walks out of the room. It's so tight and so painful, I couldn't take it. I called once again, for a nurse, needing someone to help me. No one came. I ripped the monitors off, looking at the huge groove in my belly. On the monitor beside of my bed, because the monitors were not on my belly my baby had "flatlined". It took well over 5 minutes before a nurse came to my room, and then they were just as casual as could be, telling me. "You have to keep those on your belly."
I informed them, I was not putting them back on, that they'd better find me a doctor, and find me one now. I had been laying there for hours, and I'd yet to see my doctor, although I'd been asking for him since my admittance. They went back and looked at my chart. He'd ordered from the beginning for an internal monitor for me. I was NEVER supposed to have had those bands on my belly.
By this time, I was beginning to hurt all over, badly. My back was killing me, and I was feeling contractions strong. My epidural wasn't working. Once again, calls to the nurses were going unanswered, and tears were streaming down my cheeks. My husband had to go out into the hall and flag down a random nurse, because mine was nowhere to be found.
They called an for an anestheseologist, who asked me if I was feeling pain or pressure. Looking at the man as if I could kill him, I sobbed and told him "I think I know the difference, I'm in agony," and he didn't question me any more. He rebolused my epidural, and for a very short period of time, my epidural worked again.
Around roughly 11am, I finally saw my doctor, I had been in labor almost 12 hours before a doctor had finally darkened my doors. He told me I was nowhere near delivering, and to hang in there. I was sick, I felt like I was going to pass out, and going to die. My "oh so compassionate nurse" Connie, didn't give a fuck. She did little to reassure and or comfort me. I was in transition, and my doctor was the one who had to explain this to me, although she knew, and could've been explaining this and helping me, but instead, she chose to be a bitch.
Time passed, and the epidural continued to just die. The pain got worse and worse. I was laying in absolute agony, with no one to help me. No one to check on me, and no one who cared. My nurse was the most uncompassionate human being to walk the face of the earth. At 5:30pm, I was in so much pain, I genuinely believed I was going to die. I was on my right side, looking over at the monitors, gripping the railing on my bed so tightly. My blood pressure was 190/128. I believed I was going to die. I knew Savannah and I weren't going to make it. I looked out the door at my nurse, Connie, and the CRNA, and said, "Someone, please.... please help me," and to this day, the look on her (Connie's) face, haunts me. It was the most uncaring, horrible look I've ever seen. I don't know how someone in health care can look at someone in pain that way. The fear I felt in that moment will haunt me for the rest of my life. I will never forget the way she looked at me. Ever. It's one of those scars that will never heal.
The came in and informed me this was the last time my epidural could be rebolused. It would only last for a short period of time. I was in so much pain, I didn't care. I just needed relief. And a short bit of relief I got. It was enough to get me through, but not through the birth. I felt every agonizing contraction, and giving birth is probably the most painful thing I've ever done. I screamed out and begged God to give me strength, because there was none left in my pain-ridden, weak body. I did NOT want to give birth naturally, much less unmedicated, and I did both.
At 6:10pm on February 4th, 2010, I gave birth to a baby girl that wasn't breathing. She had aspirated meconium into her lungs. I watched my mother collapse into her seat, while my husband moved over to block me from the bassinet. I kept screaming, "why isn't my baby crying? Why isn't she crying? What's wrong with my baby?" After what seemed like an eternity, but was a matter of less than few minutes if that, she was breathing. She was placed in my arms for a brief moment, then whisked away to the NICU for examination while I was stitched up from the rough birth.
I was exhausted and in so much pain. After they took the baby to the NICU, I was left laying there with no relief. I'd asked for pain meds, but of course, the shining star nurse Connie, didn't honor that request, either. My mother was rubbing my back, trying to ease the horrible pain. For close to three hours AFTER I'd given birth, the table with my placenta, all the implements, covered in blood, and all that, was sitting right beside my bed, despite call after call to the nurse's desk to get it removed. To this day, my friend Nikki still talks about how it terrified her when she walked into my room. She said there was so much blood, everywhere. At the bottom of my bed (where they take the beds apart for the women to give birth), there was a huge puddle of blood that hadn't been mopped up, either, along with the table. It wasn't until shift change, that my guardian angel, nurse Michelle came on shift, and things finally took a turn. By that time, my husband had become fed up, and pushed the table out into the hall, and loudly said, "someone can fucking do something with this shit, we've had to look at it for 4 damn hours, it's their problem, now." When nurse Michelle found out that my table had been left that long, she was outraged. She promptly got me my pain medication, and I finally felt well, and within about 30 minutes, was able to enjoy visiting with my family and friends, and ate for the first time in about 24 hours. I even walked up to see my baby for the first time in the NICU. She was breathing on her own, sleeping, and beautiful.
All seemed well for the moment. Little did I know my world would come crashing down upon me.
I was discharged from the hospital on February 6th, having to leave my baby behind. She was on IV anitbiotics for what was only supposed to be three days. It was agony leaving her there, but I was in no shape to be caring for her. I could barely walk from such a rough birth. When I got home that day, my world stopped when the doctor called me from the children's hospital. My child had tested positive for Group B Strep. How could this happen? I had tested negative, how could she have it? They needed permission to put her to sleep to do a spinal tap. I was beside myself with grief. My precious baby could have something even more fatal. Thanks be to God, everything turned out to be fine, but I didn't.
During this time, I made the most horrific discovery that any woman could ever make. I had my first bowel movement post-partum. I know you're wondering why I'm telling you such a thing, because it wasn't normal by any means. It didn't come from my rectum. No. It came from my vagina. The Entire. Thing. I was absolutely horrified and confused. I didn't understand what was happening to me, much less *how* such a thing could happen. I screamed for my husband, and started crying. He helped me fill the bathtub up, because all I wanted was to get clean. As soon as I sat down, fecal matter started floating out of my body. I raised my hands sobbing and screaming with fecal matter on them. Not understanding, only wanting to get clean, and absolutely traumatized that I couldn't. Helped me up, and turned on the shower. For years, I had flashbacks to that moment. I couldn't get that image out of my mind. It's hard for me to even type to this day.
I called the oncall doctor, the one who SHOULD'VE gotten her ass out of bed and given me a c-section, but chose to leave me to labor for 18 1/2. She tells me it sounds like an obstetric fistula, and that I needed to see my doctor on Monday morning. I'm thinking, "ok, I only have to live with this for the weekend, I can do this." I had no idea.
I go in for my exam on Monday, and my doctor sticks two fingers through from my vagina all the way into my rectum. I have a hole in my vaginal wall the size of a golf ball. I was left to labor so long, that the skin between my rectum and vagina died, leaving a hole. My doctor feels confident he can fix it, but I have to wait two weeks. TWO WEEKS! I've gotta live like this for two weeks!
I went out and bought some Depends and I have and irrigator bottle to rinse myself, but I still feel very insecure. I can't control anything, and have accidents constantly. Other than going to the hospital to see Savannah or to church, I didn't leave the house.
The only bright spot I have during this time is on Valentine's Day is Savannah is given a clean bill of health and discharged. Shortly after this, I go in for surgery. Dr. H does his best, and I end up in so much pain in recovery. I'm there for roughly 3 or 4 hours post-op. The pain is intense, and I don't feel very natural "down there". I'm really scared things aren't going to turn out well.
And within less than a week, they don't. The surgery has failed. I'm starting to have leakage through my vagina again. I call, once again, on a Sunday night, the on-call line. On a Monday morning, it's confirmed, my fistula has reopened. I'm devastated. It's *not* as big this time. Only about the size of a quarter, but enough to cause me pain.
During this time, I'm severely depressed and having flashbacks to the trauma of the neglect and the birth, coupled with the fact that I'm exhausted. I'm attributing that to the fact that I'm a new mother. Wrong.
I went to see my FNP, asking to get some help with antidepressants. She of course is glad to get me some meds, and does some bloodwork. My iron is low. DANGEROUSLY low. It's only a 4. I'm having to start IV infusions while trying to find a surgeon to help me.
I'm having constant thoughts of death. I just don't want to live anymore, and I don't want to go on. I'm so angry at God for letting this happen to me, and angry that I have to live with way. I know I need help. I pull my insurance card out, and call the mental health line on the back of the card. The young man I spoke with was so helpful. We had about a 30 minute conversation, and he gave me *literally* 20 phone numbers of different therapists in my area. I was finally feeling a little hopeful. My hope was quickly taken away with each call. Each of the 20 numbers were either disconnected, wrong, or didn't know who I was talking about. I was once again, back in the hole with no help to be found.
I was left on my own. I looked the phone book, calling random shrinks, leaving message after message, asking if they accepted United Healthcare, just desperate for someone to help me. The one person I was finally able to speak with, only took children. I broke down sobbing on the receptionist, telling her I was desperate, I knew I had PTSD, and I just needed someone to help me. She told me, she didn't know what to tell me, and just hung up. I had no one.
My family didn't understand the pain I was feeling. In the words of my mother, I needed to just "let it go" and move on. The best- I mean VERY best thing she told me, brace yourselves for this one: and put yourselves in my position here, I had to go to the bathroom. That was about a good 20 minute ordeal at LEAST. So, I'm sitting on the toilet, trying my best to keep it together while, refilling my refillable douche bag with water for God only knows how many times to try to flush the fecal matter out of the fistula, so it won't keep leaking into my vagina. My mother calls me while I'm sitting on the toilet, doing this. She proceeds to tell me that she and my oldest sister think that "I'm not dealing well with this because nothing "really bad" has ever happened to me before". No mom. I wasn't sexually abused from age 13 to 18. And this isn't really fucking bad, either. It's not bad having to sit on a toilet until your ass goes numb, and your vagina literally hurts from having to douche over and over and over again in a futile effort just to keep clean. Then, the minute you feel that fecal matter leaking, and you see it- you're triggered. It ALL. COMES. BACK.
No one could understand that every time I closed my eyes, the horrible images just kept replaying like a horror movie in my head. To make matters worse, I had to begin taking my IV iron infusions. In order to do this, I had to go to the blood and cancer clinic. My doctor was absolutely awesome, don't get me wrong. Dr. F took wonderful care of me, and he was one of the few people that happened to be a bright spot during this time of deep darkness, but walking into the infusion room was overwhelming. There were rows of reclining seats with people of varied ages taking treatment ranging from iron, like myself to chemotherapy. I felt beyond guilty as I sat there getting the IV put in my arm. I was only there for a simple iron infusion, while many of these people were fighting for their lives. I kept thinking to myself, "I'd trade places with you any day, anything to get me a day closer to death." There they were fighting for their lives, and I was praying to die. What cruel irony, and it overwhelmed me with guilt.
Physically, I did feel better after getting the iron infusions, because that was part of the severe fatigue that I was having, but mentally, it just fucked me up all the more. I was tired of living with the fistula, and began to search online for colorectal surgeons to help "fix" me. I knew I wasn't going local. I'd already had bad enough experiences locally, I was going out of the area. I found a doctor in Knoxville that I thought looked like a great option. Dr. James Baker. I was able to get an appointment pretty quickly, and had great hope that maybe this was the beginning of healing for me.
My aunt drove me down with my baby to Knoxville for my appointment. The appointment that I'd had my hopes built up for went less than stellar. There's NOTHING like being asked after your examination "Do you have family here with you today?" in a very serious voice. He went to get my aunt, and met with us in his personal office. He spent a good 30 minutes telling me I had severe damage to my sphincter, and I would need 4 surgeries over a period of roughly 2 years to be healed. He got angry when I asked him if he could or couldn't heal my fistula, and then informed me that he couldn't do a colostomy on a "person of my size". What. The. Fuck. I'd lost over 170lbs, it's not like I was the size of a damn house. I'd had enough. He wasn't going to heal my fistula, and he wasn't going to help me. He wanted to sign me up for my first surgery right away, and it wasn't even going to help the fistula. When I stopped for a brief moment outside to let the nurse see my daughter, he angrily pointed me in the direction to sign up for surgery. I looked him in the eyes, and told him, "Just because you look at assholes all day long doesn't mean you have to be one," and walked out the door.
I sat in the car angry, and in tears. I didn't know what to do, or where to go from there. One of the "supposed" best, wasn't going to help me, nor did he seem to have my best interests at heart. I was left having to search again. More depressed than ever and feeling hopeless, I went back to Dr. H, taking his suggestion to see the local doctor. Dr. P.
She examined me, and actually gave me some hope. She told me with the size of my fistula, that it was so small, to give it some time, and it should heal on it's own! Well, to me, that was terrific news! I thought, maybe I'll be able to deal with the humiliation of having to buy out the douche aisle every week at Wal-mart, and wearing Depends 24/7 if this thing is going to heal!
During this time, a woman from my church who knew about my story, told me about a therapist she'd been seeing, she said she was wonderful, and would most likely help me. I called her, and within 30 minutes, had a call back! What luck, she took my insurance, and I had an appointment! Things were finally looking up for me through all the hell I'd been through.
When I was finally able to see my therapist, she was in absolute awe. She'd never heard such a story, and diagnosed me immediately with PTSD. She gave me some basic coping skills, and I was really putting forth an effort, although I was still struggling greatly. Other than to go to doctors/therapist appointments and church, I didn't feel confident enough to leave the house. With that extra hole, there was no way to predict if I was going to have an accident, and if was bad, who knew if the Depends would catch it all? I would be mortified if someone smelled me in public. That would've destroyed me.
I still struggled while trying to let things heal, but kept my head up as best I could, until one fateful night, when a stomach bug hit. I knew in my heart my fistula had opened more, but didn't want to face it. I went back to Dr. P, who confirmed this, and told me, there was no way it would heal on it's own now, and that she couldn't do anything to help me. She told me about this WONDERFUL Urogynocologist that had just moved to our area from Texas, and he should definitely be able to help me! I was so hopeful, once again.
I made an appointment immediately with this new doctor, and had such hope. I was absolutely dumbfounded when during my exam, he asked me if I wanted to SEE my fistula. Who in their right mind asks a traumatized fistula patient if they want to see their fistula? I informed him, no, I live with it on a daily basis, I don't wish to see it. Then, he goes on to tell me about treatment. He gives me a long list of what he wants to do, and it's definitely NOT what Dr. P assured me. In other words, this man had no fucking clue what he was talking about. He then informed me he was a minimalist, and that if the first surgery didn't work, we could always try X, Y, Z, and I was speechless. I'm not some damn lab rat. I'm a human being, and a traumatized one at that. It was a one shot deal, not a we're gonna just play around and see what happens.
I left there, even more hopeless than before. I truly believed I'd never be healed. I went home that day, and made a decision. I didn't want to live anymore. I couldn't live like this, and I couldn't live with this pain. No one could help me, no one knew what to do for me, and I wasn't going to live this way. My husband had gone to work, and I was home alone. I was sitting on my bed, crying. I just simply couldn't take it. I grabbed my bottle of Topamax, and poured a good handful. If God wasn't going to me, I was going to meet Him on my own. As I'm sitting there sobbing, I heard a loud voice scream stop. I dropped the hand full of pills. Looking around my bedroom, I thought my husband had come home early. I got up, walking around, I saw no one. I went through the entire house, I was alone, and the front door was still locked. Bitter tears streamed down my cheeks. I couldn't explain the voice, to this day, I still can't, but I knew that suicide wasn't the right answer as of that point. For some reason, I was supposed to keep on. I picked up my pills as I cried, and got in the bed. I cried myself to sleep.
I went back to see Dr. P the next day, begging for a colostomy, just begging for a chance to feel like a human, to be somewhat normal. She out and out refused, and then had the audacity, as she left the room to look down at my daughter, sleeping in her car seat and said, "you did this to mommy!". I thought I would have to live that way for the rest of my life. I had pretty much resigned myself to the fact that I would live with an obstetric fistula for the rest of my life.
I was dealing with flashbacks every time I went to the bathroom, and had withdrawn myself from life. I merely existed. It wasn't until I went to for a check up with my Hematologist, Dr. F, that I got a glimmer of hope. He could see that I was struggling, and asked me how I was doing. I told him I'd given up hope, that I'd realized that I was going to live this way for the rest of my life, and it was then, he told me about his life. He grew up in Nigeria. He'd seen women in his village who'd lived with obstetric fistulas be cast out and ostracized for simply having to live with this horrible condition. He knew how rough it was, and he hadn't had the easiest of lives. He told me, "Christy, we live in the greatest country in the world. We can transplant organs, limbs, treat diseases that many are dying of in third world countries, there is NO reason why they cannot repair a hole in your vagina. You don't stay here. You go to Vanderbilt, Duke, The Mayo Clinic. Get out of here. There is help, there is hope. Don't give up. If I had given up, I would still be in Nigeria. I kept hearing people tell me no, but I never gave up. I kept on going, and here I am today, saving lives." That saved my life. Literally.
I went home that night, and got on Vanderbilt's website. I knew the minute I saw Dr. W that he would be the man who would heal me. To this day, I can't explain it, but peace washed over me. I read his credentials and testimonials and there was no doubt. This would be the man to heal me. I called my FNP the next morning and said, "I want an appointment with Dr. W at Vanderbilt, NO one BUT him." She called me back, sad. It was going to be March before I could get in with him. I was ok with that. Even though it was December, I was willing to wait. I'd waited this long, I could wait a little bit longer.
The months seemed to fly by now that I knew I was getting help. When March arrived, my appointment was like a dream. He was everything I'd imagined. The man was kind, compassionate and caring. He examined me, and sat down and explained that I needed a complete recto-vaginal reconstruction, and that he did them regularly. It was no big deal for him, and he'd be glad to schedule it whenever I'd like. I was like, TOMORROW! In reality, I had to wait until May, when my husband was able to get time off of work, as a trip to Nashville for us was 4 hours away, but worth it all. In the mean time, he wanted me to start biofeedback physical therapy. So, I was travelling down to Nashville twice monthly until my surgery for PT and a visit to him for check ups.
I had so much hope. I was happier than I'd been in months. A week before my surgery date, my friends had a party for me. I was finally starting to be social again, and it was SO wonderful to get together with all of the people I loved. I was having a wonderful time starting to live again. May 11th got there before I knew it. At 7am, I was checked in, and laying in my bed, waiting to go into surgery. The anesthesiologist came by to see me, and I informed him that I wanted to be doped up GOOD when I woke up, as the first time I had surgery, they gave me nothing, and I was in so much pain, that I was screaming when I woke up. He was in awe, and assured me that I would NOT be feeling that way here. Then, Dr. W came in. I was ready to go! I was wheeled to the ER, where I woke up, REALLY drugged. So drugged, I thought I was in the tanning bed. They informed me I was NOT in the tanning bed. I then asked if I could go to the tanning bed. Once again, they told me no, I was having surgery. I then told them, Dr. W wanted me to go to the tanning bed. Everyone laughed and said, "I don't think Dr. W wants you go to the tanning bed." Then the room was silent, I know he thought I was asleep because he said, "I don't like looking at tanned genitals," to which I screamed out, "You're just gonna have to look at my tanned tufu!" The entire ER busted out in laughter. Dr. W came around to hold my hand, and they knocked me out.
The next thing I remember is waking up in recovery being nice and warm. I looked up at the nurse and asked, "Am I at the spa?", she laughed and told me I was in recovery, and told me I was too hot, she plugged an air conditioner into my gown (which was friggin' AWESOME, BTW), and that I was healed. I was healed. 15 months I'd lived with an obstetric fistula, and I was healed. She then asked me if I was in any pain, and I lied and said yeah a little, even though I was flying high, because I was afraid of the pain coming. I wasn't feeling shit after that shot.
I spent roughly an hour in recovery before being moved to another type of recovery/holding area. I got to see my family and was so happy to see everyone! I felt great and was healed! It didn't take long for them to find me a room, and settle me in. I slept most of the day/night, only waking up to push a button when a twinge of pain would hit.
I awakened early, and was served breakfast. It was the first real food other than jello that I'd seen in about three days. I was absolutely THRILLED. I don't know if it was exceptionally good hospital food, or if it was the fact that I hadn't eaten in days, but that was one of the best meals I'd ever had. I can still remember it. Scrambled eggs, a sausage patty, a biscuit, a cup of pears, and a glass of orange juice. I could hear the nurses outside of my room debating on whether or not I was supposed to have gotten a meal, and was thinking to myself, "I dare you to come in here and take my food, I'll bite your hands off!"
Not long after I'd finished eating, and I assure you, it didn't take me long, Dr. W came in to examine me. He told me everything was looking good, that my catheter could come out, and I could go home! (well, back to my hotel). I was thrilled! I was a little nervous about walking, as the last time I had surgery, I was in so much pain the first time I walked in nearly passed out. After the nurse took out my catheter and had me go to the bathroom, I couldn't believe how natural everything felt! It didn't hurt at all to walk! I was a little sore, which, obviously was to be expected, but it was NOTHING like what I had feared.
I put on my clothing, and waited for a member of hospital personnel to bring up a wheelchair to take me down to the car. Two of the nicest young men came to get me. One was even wondering why I didn't sue when I was explaining to him the surgery I had, and why I was there. Chris helped me into the truck and took me back to the hotel. We were staying an extra 24 hours after surgery just in case something went wrong. He went to Rite Aid to fill my pain meds, and then came back. I was happy to get a shower, and get in the bed. I slept most of the time. My mom and aunt had been keeping Savannah in another room.
Things went just fine. I woke up the next day with no problems, and we made the 4 hour journey home.
The next week was a little difficult. I didn't experience too much pain, but I was on lift restriction. I was to basically be a sloth. So, all I did, in essence was go from my bed to my couch, and back again. I took my showers and baths like I was instructed to. Healing was a VERY slow process. I went back for my post-op appointment roughly a month later. I got the news I'd waited so very long to hear.
I was healed.
Thank you, Dr. Wise, I was healed. The only hitch, my sphincter was still severely damaged. He did the best he could with what he had to work with. I didn't blame him for this. It had been absolutely torn apart from the birth, then bless Dr. Hinton, he did the best he could trying to put it back together, but multiple surgeries, they aren't a good thing with a muscle like your sphincter, and mine was extremely weak.
I had to have more physical therapy. That was ok! I thought, at least the fistula is gone! I'm healed! Wrong. My high and joy of being healed was short lived. I had to drive two hours down to Knoxville, and two hours back. That was the closest office that was able to do my physical therapy, well, the kind of physical therapy that *I* had to have, which was bio-feedback physical therapy. Let me tell you, there's NOTHING like having someone stick their finger in your vagina, and telling you to squeeze! Take a break, and squeeze! Especially when you don't have any problems with your vagina, now. Then it's even MORE joyful when you're given what's the equivalent of vibrating bullet that you get to shove up your ass, while you do Kegal exercises. Are you with me? Because, I'm not joking here, either. Yes, this little "bullet", called an "e-stim", you shove right on up your ass, and it vibrates. You have to "squeeze" it for 10 seconds doing a proper Kegal exercise rectally (does anyone here know how freakin' hard that is? Yeah. Then, the box counts down from 10, and when it reaches 1, then you get a 5 minute break to rest, and it repeats for 30 minutes. Yes, you heard me correctly. You do this for 30 minutes. I get in a car, and I drive 4 hours for this. Then, I have to go home, and do it twice a day.
I can't explain it, but there's something about having to watch the time on that e-stim box, and sitting doing those Kegal exercises that finally took a toll on me mentally, and emotionally. I broke down one night. I just couldn't do it any more. I was done. I wasn't seeing any results. I'd had this box that I had to "rent", whomever the company was that the PT company used automatically took money out of my checking account each month. I was tired of paying for this box. I was tired of using that horrible vibrating bullet- because that's exactly what it was. They could call it whatever it was, but at the end of the day, it didn't feel like physical therapy to me, it felt like I was being violated, and wasn't a woman any longer. Maybe it had something to do with being a survivor of sexual abuse. Maybe subconsciously, it was a trigger for me, I don't know? All I know, was it made me feel bad, and hopeless. I didn't like it, and after six months, and the day before, having an accident that was so severe I had to come back and clean the living room floor, and trail I'd left all the way to the bathroom as I sobbed from the shame and hopelessness I felt, yes, I knew that the worthless vibrating bullet and stupid box was going bye-bye.
I just decided that I was going to deal with using the wet wipes to clean myself up with after every bowel movement, and gauze pads folded over placed up against my rectum to keep any leakage from getting all over my underwear, this, along with Depends when going out became my new normal. It wasn't *as* bad, because I didn't have the fistula- at least it wasn't coming out of my vagina, but it felt like a part of me was dead. I would never be the person I used to be. I'm always nervous. Always afraid what if I have to go to the bathroom? I thought once the fistula was healed, that part would be over with. My heart is broken that I'm not able to go back to work. I understand why, but it rips my heart to shreds. I can't be left alone the store, and it's not good for business if I were waiting on a customer or doing a a make-over and would have to just leave suddenly to go to the restroom. Because of the time it takes me to clean up after a bowel movement, and what it takes to get clean, I would be off the floor for an extended period of time, and that's just not something that can happen in cosmetics/retail. It's depressed me greatly. I never imagined that my life would change like this. I never thought that despite having a successful surgery that I would live with the complications for the rest of my life. I'm coping the best way that I can. It's not easy. I feel isolated a lot. I still do those Kegal exercises daily, even though I think they're probably a bunch of baloney. I just couldn't do that e-stim box, again. I've come to accept that my sphincter is what it is. There's damage that's beyond repair, and I'm living the best life that I can. I have some good days, and I have some really, really bad days. I try to be thankful for what I have, but it's hard to not long for the days when nothing was broken.
OBSTETRIC FISTULA IS NOT ERADICATED IN THE DEVELOPED WORLD.
It causes so much damage mentally, physically, and emotionally to women. We need to talk about this. We need to be open. We need to educate others. Those who are suffering need to know they aren't alone. They need to know there is help, and there is hope. I NEVER want anyone to to go through what I did. I never want them to feel the way I did or suffer alone. Ever. Please, if someone you know is a victim of obstetric fistula, do NOT belittle their struggle. It isn't "just a little hole". Don't tell them, "it's not that bad", or to, "be thankful it's not worse". We are thankful it ISN'T worse, and if we were fortunate enough to have a healthy baby, God knows we are so VERY thankful for that! But, it does NOT change the fact that we are so very broken, and hurting. Don't tell them you understand what they're going through- UNLESS you are a survivor of obstetric fistula yourself. DO tell them you are there for them if they need a shoulder to cry on, or to help with their needs: child care, housework, ect. You have NO idea how much it means to have someone offer to help with simple things for us during this time, especially when it comes to going out in public places. DO come see us/encourage us to get out with you. This was the best thing that ever happened to me. My friends started "Wednesday Nights" when I had my fistula, because I wasn't comfortable getting out in public. A large group of us went to a friend's house for dinner every Wednesday night. That meant everything to me. I got to get out of my house, be social, and see so many of my friends. That's SO important. It's important that we aren't forgotten. Those are just a few tips for friends and loved ones to help those who are struggling. Love and blessings to all.
