Part 1: Physical Side Effects, and How Medical Care as a Female Sucks!
I have written and erased this post so many times it's not even funny. Being a woman is hard. This isn't a pity post, but it's to shine a light on the reality a lot of women face all the time. Not just women who have been pregnant and given birth, but women in general. It's hard to find support because we just don't talk about it. I don't know if it's shame, or embarrassment, or fear. What I do know is that we all need to stand together to fight to be heard. To fight for better care and treatment. We are not "hysterical" or "emotional". We have valid emotions and are generally right about our bodies.
My story really begins when I was a teenager. When I was 15 my periods decided to go crazy. I was given birth control to help regulate them and help with the pain, but the hormones really screwed up my system so I stopped taking them. I can remember being so miserable on days my period started that I would eat 1000mg of ibuprofen in hopes it would help. I was told it was normal, I was overreacting, and that it's just part of being a woman. I never had any tests done to see what could be causing it. I was never given an ultrasound to check on why my periods were so awful and so I fought through the pain and went to school and acted like it was normal, while inside I was fighting tears.
I got pregnant for the first time at 19. I didn't realize that being ignored wasn't just a part of being a teenager but of being a woman in general until I was in the hospital giving birth to my first child. My pregnancy with Becka was near perfect, minus how sick I was in the beginning. Instead of letting me continue to full term I was scared into an induction. Looking back I really wish I knew more or had someone there to tell me it wasn't necessary. On top of being manipulated into an induction, my wishes in the hospital were completely ignored. I told a room full of people that I didn't want my waters broken prematurely, I wanted to try and do this on my own since I was already being induced. Almost immediately after I told everyone this my OB (obstetrician), who apparently was in a rush, broke them anyways. Without warning. That through my labor into overdrive, Becka was born too quickly and had fluid in her lungs and I was absolutely miserable. Then the hospital ignored my wishes for anything related to her, including not giving her formula. I had never felt so defeated, ignored, disrespected and little has I had felt right at that moment and I've been through some awful stuff in my life up to that point. It was after processing her birth, and meeting some wonderful women on CafeMom "Birth is Normal" group, that I realized that this happens all the time. Women are ignored, scared into inductions or cesareans, and/or belittled by medical professionals every single day. I knew if I was ever pregnant again I wouldn't give birth in a hospital unless it was medically necessary. I still had harsh periods, and pain in my right side. I had a naturopath tell me once, when I was 20, that I was having ovarian cysts. She could tell that the pain wasn't normal but unfortunately there wasn't much I could do but suffer through it.
Fast forward to 2008. We had just moved to KY and I found out I was pregnant with Taegen. It was then that the search for birth centers, home birth midwives, really began. KY is one of many stupid states that don't allow midwives to perform home births. Tricare is also an insurance company that doesn't cover midwives/home births. (All of this is based on 2008 research things may have changed) The closest birth center was almost 2 hours away, so we began prepping for an unassisted home birth. It took me a while to convince Alex that this was the best option though. There were a lot of arguments about the what ifs, and concerns. I knew I wasn't going to go through what I did with Becka ever again though. He was never on board until I ended up in the hospital with major bleeding at 15 weeks. The treatment I got/he got from the staff was unbelievable. The nurses were cruel and heartless. We found the baby's heartbeat and I was so relieved. Without skipping a beat the nurse said: "That doesn't mean anything, you could still be miscarrying". The (male) OB was just as rude. I was diagnosed with a partial placenta previa. I was elated that the baby was healthy, and, I understood that if it didn't clear up or got worse a cesarean would be my only option. The OB point blank said that a Previa wasn't something to relieved over because cesareans are rough, and all I could think was "but losing the baby would be worse asshole." It was an overall awful experience and I had to be monitored overnight. Alex told me not long after this experience after we had time to fully process everything, that if the Previa cleared up we would not be having Taegen at this hospital at all. It was a long few months waiting and being monitored. I can remember the appointment where the OB said the Previa had cleared up and I was transferred to the midwifery clinic. It was a huge relief. The treatment I received from the midwife was night and day from the treatment I received from the OB. She was friendly and respectful. The rest of my care was wonderful, my midwife was such a sweet human being and she never pressured me into anything.
May 26, 2009, I gave birth to what would be my last child. Taegen was born healthy at home, 9 lbs 1oz in a very fast an intense labor. I didn't tear and we were all perfectly healthy. His male first sergeant forced him to take Taegen to the hospital to get checked out. It took me a long time to get over it. The pediatrician and hospital were awful when we decided to sign AMA and go home. The pediatrician, also a male, told Alex that we were going to kill Taegen because she was big and would inevitably have blood sugar and eating problems even though she was nursing PERFECTLY. It was so awful to hear this doctor using scare tactics on us, even though we knew she was perfectly healthy, and I was as well. Thankfully Alex was there because I probably would have broken down if I was alone with that man.
At my 6 weeks check up my GYN(gynecologist) noticed that my uterus was tilted. I was getting the IUD in and it was super hard to get in. My uterus wasn't tilted before I got pregnant with Taegen. The IUD was eventually inserted and it worked great. My periods were always heavy and a disaster so I knew they would suck but what I didn't know was how much damage was actually done to my body. A few months later I noticed I had issues with bowel movements. I had to physically push down on my perineum to use the bathroom. I learned, because of Cafemom, that I had a rectocele, which is a type of prolapse where your vaginal wall separating your vagina from rectum weakens. My GYN at the time referred me to a specialist who then recommended physical therapy because she didn't think it was that bad, and the goal was to avoid surgery for the moment because I wasn't sure we were done having kids. A pregnancy meant that I might have to redo any surgery done.
This is where things get worse I spent from 2009-2017 in an out of the ER, doctors offices etc trying to figure out why I was in so much pain all the time. Sex hurt, my periods were monstrous, and I kept getting a constant pain in my right side where my ovary was. No one submitted me for more testing, even though I was always going to the ER. All I got was "this is normal", "your pain isn't that bad", "it's just your period". Mid-2014 I was diagnosed with Pelvic Inflammatory Disease (PID) after I went to the ER with severe pain and bleeding. Who knows how long I had had it and what damage was already done. Antibiotics cleared it up but things were never the same. In 2015 I ended up in the ER again. I couldn't stand up without pain, I was in tears. This time they saw something. My fallopian tube was full of fluid, like something ruptured. I was given pain meds, and a referral to get an ultrasound and a new GYN. The ultrasound showed nothing but this GYN wanted to perform a laparoscopy. We did and she ended up scraping a bunch of scar tissue from around my uterus and fallopian tubes and getting it tested for Endometriosis. That test came back negative. Back to square one.
I got pregnant for the first time at 19. I didn't realize that being ignored wasn't just a part of being a teenager but of being a woman in general until I was in the hospital giving birth to my first child. My pregnancy with Becka was near perfect, minus how sick I was in the beginning. Instead of letting me continue to full term I was scared into an induction. Looking back I really wish I knew more or had someone there to tell me it wasn't necessary. On top of being manipulated into an induction, my wishes in the hospital were completely ignored. I told a room full of people that I didn't want my waters broken prematurely, I wanted to try and do this on my own since I was already being induced. Almost immediately after I told everyone this my OB (obstetrician), who apparently was in a rush, broke them anyways. Without warning. That through my labor into overdrive, Becka was born too quickly and had fluid in her lungs and I was absolutely miserable. Then the hospital ignored my wishes for anything related to her, including not giving her formula. I had never felt so defeated, ignored, disrespected and little has I had felt right at that moment and I've been through some awful stuff in my life up to that point. It was after processing her birth, and meeting some wonderful women on CafeMom "Birth is Normal" group, that I realized that this happens all the time. Women are ignored, scared into inductions or cesareans, and/or belittled by medical professionals every single day. I knew if I was ever pregnant again I wouldn't give birth in a hospital unless it was medically necessary. I still had harsh periods, and pain in my right side. I had a naturopath tell me once, when I was 20, that I was having ovarian cysts. She could tell that the pain wasn't normal but unfortunately there wasn't much I could do but suffer through it.
Fast forward to 2008. We had just moved to KY and I found out I was pregnant with Taegen. It was then that the search for birth centers, home birth midwives, really began. KY is one of many stupid states that don't allow midwives to perform home births. Tricare is also an insurance company that doesn't cover midwives/home births. (All of this is based on 2008 research things may have changed) The closest birth center was almost 2 hours away, so we began prepping for an unassisted home birth. It took me a while to convince Alex that this was the best option though. There were a lot of arguments about the what ifs, and concerns. I knew I wasn't going to go through what I did with Becka ever again though. He was never on board until I ended up in the hospital with major bleeding at 15 weeks. The treatment I got/he got from the staff was unbelievable. The nurses were cruel and heartless. We found the baby's heartbeat and I was so relieved. Without skipping a beat the nurse said: "That doesn't mean anything, you could still be miscarrying". The (male) OB was just as rude. I was diagnosed with a partial placenta previa. I was elated that the baby was healthy, and, I understood that if it didn't clear up or got worse a cesarean would be my only option. The OB point blank said that a Previa wasn't something to relieved over because cesareans are rough, and all I could think was "but losing the baby would be worse asshole." It was an overall awful experience and I had to be monitored overnight. Alex told me not long after this experience after we had time to fully process everything, that if the Previa cleared up we would not be having Taegen at this hospital at all. It was a long few months waiting and being monitored. I can remember the appointment where the OB said the Previa had cleared up and I was transferred to the midwifery clinic. It was a huge relief. The treatment I received from the midwife was night and day from the treatment I received from the OB. She was friendly and respectful. The rest of my care was wonderful, my midwife was such a sweet human being and she never pressured me into anything.
May 26, 2009, I gave birth to what would be my last child. Taegen was born healthy at home, 9 lbs 1oz in a very fast an intense labor. I didn't tear and we were all perfectly healthy. His male first sergeant forced him to take Taegen to the hospital to get checked out. It took me a long time to get over it. The pediatrician and hospital were awful when we decided to sign AMA and go home. The pediatrician, also a male, told Alex that we were going to kill Taegen because she was big and would inevitably have blood sugar and eating problems even though she was nursing PERFECTLY. It was so awful to hear this doctor using scare tactics on us, even though we knew she was perfectly healthy, and I was as well. Thankfully Alex was there because I probably would have broken down if I was alone with that man.
At my 6 weeks check up my GYN(gynecologist) noticed that my uterus was tilted. I was getting the IUD in and it was super hard to get in. My uterus wasn't tilted before I got pregnant with Taegen. The IUD was eventually inserted and it worked great. My periods were always heavy and a disaster so I knew they would suck but what I didn't know was how much damage was actually done to my body. A few months later I noticed I had issues with bowel movements. I had to physically push down on my perineum to use the bathroom. I learned, because of Cafemom, that I had a rectocele, which is a type of prolapse where your vaginal wall separating your vagina from rectum weakens. My GYN at the time referred me to a specialist who then recommended physical therapy because she didn't think it was that bad, and the goal was to avoid surgery for the moment because I wasn't sure we were done having kids. A pregnancy meant that I might have to redo any surgery done.
This is where things get worse I spent from 2009-2017 in an out of the ER, doctors offices etc trying to figure out why I was in so much pain all the time. Sex hurt, my periods were monstrous, and I kept getting a constant pain in my right side where my ovary was. No one submitted me for more testing, even though I was always going to the ER. All I got was "this is normal", "your pain isn't that bad", "it's just your period". Mid-2014 I was diagnosed with Pelvic Inflammatory Disease (PID) after I went to the ER with severe pain and bleeding. Who knows how long I had had it and what damage was already done. Antibiotics cleared it up but things were never the same. In 2015 I ended up in the ER again. I couldn't stand up without pain, I was in tears. This time they saw something. My fallopian tube was full of fluid, like something ruptured. I was given pain meds, and a referral to get an ultrasound and a new GYN. The ultrasound showed nothing but this GYN wanted to perform a laparoscopy. We did and she ended up scraping a bunch of scar tissue from around my uterus and fallopian tubes and getting it tested for Endometriosis. That test came back negative. Back to square one.
Things didn't get better. Only worse. The rectocele was becoming more noticeable, the pain in my uterine area was becoming more intense, and I was in pain every single day. Sex hurt so much, it would make me cry sometimes the pain was so bad. I would try and just suck it up because I didn't want Alex to think it was his fault. Isn't it funny how we put ourselves on the backburner for other people? Even though I logically knew he'd understand and would never hold it against me, I just didn't let him know how bad it had actually gotten. When we moved in 2016 to Alabama I had hoped I would finally get help, being in a new area. The gynecologist looked at my history and even though I was in pain, she just sent me to check on the position of the IUD. It was normal like it always was. Yet again I was completely blown off with zero help or answers. I practically lived on 1000mg of Ibuprofen daily only to make the pain manageable. No one wanted to do surgery, no one suggested removing the IUD, and no one really took me seriously because on paper I looked fine. I literally felt like I was going crazy. Maybe I was just a big baby? Maybe I was weak? Maybe I was imagining all of this? Maybe this is just how things are supposed to be? Maybe this was karma for being a crappy human being? The pain negatively affected my life and there were days I couldn't move or do much and the kids and Alex just got so used to me hurting it became commonplace. I felt so frustrated and defeated.
We moved to TX towards the end of 2017. It took me a while to make a doctor's appointment with my primary care manager, which is a requirement with Tricare, in order to get a referral for a Gynecologist. Moving is always hard on setting up appointments. I was hoping that since we were in a bigger city I would have more luck with specialists. As soon as I spoke with my primary care doctor she was all "there's definitely something wrong and I am referring you asap." I had an appointment with a gynecologist within two weeks. When I first met her it was hard. I had a laundry list of things to talk about, years of damage. We went through everything, the PID, the laparoscopy, the pain. She dug through my files and looked at all the stuff saved from the other military treatment facilities. We were developing a plan. Tricare wants you to jump through hoops before approving surgery so I got blood tests done, full infection panels done, and ultrasounds. At the ultrasound, my IUD was in the wrong location. Thankfully it hadn't perforated my uterus. We removed it. I took a strong dose of antibiotics in case there was an infection lurking as well. Removing the IUD didn't help with the pain at all so when I had a follow up we discussed different options. She mentioned a uterine ablation, which basically is burning the lining of your uterus to remove the layers of scar tissue. We also discussed my rectocele and the possible repair. She could tell, during an exam, that my vaginal wall was weak. Not only that but she could see how sensitive my cervix was. It was red and starting to bleed just by her doing the exam. She agreed that things were not normal.
I ended up getting food poisoning and really sick, I couldn't eat for days, so my PCM had me get an abdominal CT scan. My gastrointestinal side of things looked perfect BUT the CT scan was the first actual image of a huge cyst on my ovary. I knew I had been getting them but the ultrasounds never showed them, because by the time I was in pain they had already ruptured.
We moved to TX towards the end of 2017. It took me a while to make a doctor's appointment with my primary care manager, which is a requirement with Tricare, in order to get a referral for a Gynecologist. Moving is always hard on setting up appointments. I was hoping that since we were in a bigger city I would have more luck with specialists. As soon as I spoke with my primary care doctor she was all "there's definitely something wrong and I am referring you asap." I had an appointment with a gynecologist within two weeks. When I first met her it was hard. I had a laundry list of things to talk about, years of damage. We went through everything, the PID, the laparoscopy, the pain. She dug through my files and looked at all the stuff saved from the other military treatment facilities. We were developing a plan. Tricare wants you to jump through hoops before approving surgery so I got blood tests done, full infection panels done, and ultrasounds. At the ultrasound, my IUD was in the wrong location. Thankfully it hadn't perforated my uterus. We removed it. I took a strong dose of antibiotics in case there was an infection lurking as well. Removing the IUD didn't help with the pain at all so when I had a follow up we discussed different options. She mentioned a uterine ablation, which basically is burning the lining of your uterus to remove the layers of scar tissue. We also discussed my rectocele and the possible repair. She could tell, during an exam, that my vaginal wall was weak. Not only that but she could see how sensitive my cervix was. It was red and starting to bleed just by her doing the exam. She agreed that things were not normal.
I ended up getting food poisoning and really sick, I couldn't eat for days, so my PCM had me get an abdominal CT scan. My gastrointestinal side of things looked perfect BUT the CT scan was the first actual image of a huge cyst on my ovary. I knew I had been getting them but the ultrasounds never showed them, because by the time I was in pain they had already ruptured.
When I went back to my GYN I told her that I didn't think an ablation was a good option. I had found my voice, finally. We talked, she listened and agreed. She was worried that I would end up needing the surgery in a couple years anyway and that I was way too young to have all this pain. We decided on doing a hysterectomy and leaving my ovaries intact. The reason being is that there's more risk at my age to remove the ovaries, I still need the hormones the ovaries produce. It wasn't worth the risk to take them out. I agreed. We also decided that we would do a posterior AND anterior vaginal wall repair, basically, she cut a triangle inside the vagina on the back wall all the way down to the perineum. Then she would stitch those muscles together, reinforcing them. The pre-op was awful. They had to do a uterine biopsy which was seriously the worst pain I had ever felt in my life. It was this long skinny straw-like structure that went through the vagina all the way to the uterus, then it basically took a chunk of tissue from your uterus. I had to do this twice in a row since the first tissue sample wasn't big enough. I cried.
For the first time ever I had a plan. I was scared, nervous, excited. I was a mix of emotions and paranoia. This was going to be major surgery. This could change my life for better or for worse. I had no idea how everything was going to turn out, but I knew this was my best shot at feeling better. At this point, half my life has been spent in pain and agony, and I refused to do it any longer. Finally having a doctor listen, and I mean REALLY listen, was such a relief. She looked at more than test results and what was on paper, she looked at me. She saw me in pain and she knew that there was more going on, even if on paper it didn't look like it. Having a doctor believe me, and really care, was a totally new experience.
June 25, 2018, I arrived at the hospital at some crazy time in the morning (like 5 or 6 am). I was so nervous. My stomach hurt, I was shaking. It was scary. I got prepped and changed into my beautiful beige hospital pajamas. then we went to triage where my IV was set up and just waited for my doctor. I talked to the anesthesiologist and my doctor. We discussed what we were doing, how long the surgery would take, etc. She was so reassuring and just wonderful. She eased my mind. I was then given a cocktail to sedate me, said goodbye to Alex, and was wheeled into the operating room. My surgery was estimated to take 3 1/2 to 4 hours. It took 7. When I woke up I was in so much pain and sweaty and miserable. Alex was so worried he came to the hospital right as I got into the recovery room so the kids saw me all gross and out of it. I couldn't really talk to any of them because I was so loopy. Those first hours were hell, really. I could barely stay awake, the pain was intense, the catheter hurt. It was just crazy. Every movement felt like I was ripping stitches or something. My GYN came in to talk to me at like 6pm but I was asleep and she didn't want to wake me up. I didn't find out what happened until the next morning as they were removing the catheter and vaginal packing materials.
At 7 am my doctor came in with the nurse, who was absolutely an amazing nurse to me the night before. She asked all the normal questions and then went on to discuss the surgery. The first thing she told me was "You were right. I am so glad we went with the hysterectomy because after getting in there I knew the other options would not have made a difference". Can you imagine the relief I felt? I almost cried because of those three words: "You were right". I wasn't crazy, I wasn't exaggerating, I wasn't overreacting. I was right. My uterus was huge, vascular and "globby" as she described. She told me she sent it off to pathology to get it tested because it was not what a uterus should look like. She also told me that my right ovary was full of scar tissue, as was the fallopian tube, and while she removed both my fallopian tubes she scraped and removed all the scar tissue around my right ovary so it could float like it was supposed to. She also told me that the posterior and anterior wall repairs went well but that further back the wall was so weak, and I might need a second surgery to repair it. We had planned for this specific surgery, and to do what needed to be done with mesh would have added more time and a third change of the OR. It just wasn't able to happen then. She said we would wait and see how these repairs heal before deciding anything else.
Recovery was slow. It was painful. I kept overdoing it because as soon as I felt better I would do too much and regret it. My GYN wanted to see me at 4 weeks, and I couldn't wait because I wanted to get the results of the pathology on my uterus. I went in and she tried to do an exam but I was so sensitive. She could tell so she said we will wait a few more weeks to do the full exam. She checked the stitches on my perineum, I had torn one doing too much but it was healing alright anyways. We then went to her office and discussed my uterus. The pathology came back and showed that my uterus had adenomyosis, which is a condition where the endometrium (inner lining of the uterus) breaks through the muscle wall of the uterus. It can cause an enlarged uterus and a lot of pain. I was completely validated. My uterus WAS a mess. I cried when I talked to Alex about it because after all these years I was right. No one would listen except for this doctor and I will forever be grateful to her.
Recovery was slow. It was painful. I kept overdoing it because as soon as I felt better I would do too much and regret it. My GYN wanted to see me at 4 weeks, and I couldn't wait because I wanted to get the results of the pathology on my uterus. I went in and she tried to do an exam but I was so sensitive. She could tell so she said we will wait a few more weeks to do the full exam. She checked the stitches on my perineum, I had torn one doing too much but it was healing alright anyways. We then went to her office and discussed my uterus. The pathology came back and showed that my uterus had adenomyosis, which is a condition where the endometrium (inner lining of the uterus) breaks through the muscle wall of the uterus. It can cause an enlarged uterus and a lot of pain. I was completely validated. My uterus WAS a mess. I cried when I talked to Alex about it because after all these years I was right. No one would listen except for this doctor and I will forever be grateful to her.
I saw her again at 8 weeks. Everything looked perfect and was healing. I had some slight pain in my right ovary, but since the hormones are still being produced we knew that would happen. It is nowhere near as bad as it was. I have NO pain otherwise. Sex doesn't hurt and is, in fact, better than ever. I don't feel like I am dying constantly. The hysterectomy was the best decision I could have made. Unfortunately, the rectocele repair didn't work as well as we would have liked, which we knew was a risk. I am having some of those same problems as before creep up, just not to the extent they were. I also am having issues with my urethra, which are new. The hysterectomy removed the only thing holding the urethra in place, so with it gone those muscles are weak. I might need a second surgery, but first, we will try physical therapy. The urogynecologist recommended that and to let me heal 6 months before making any decisions.
Overall I feel like a completely new person. I am not in pain daily. I don't have to fight back tears during sex, or going grocery shopping. I feel like I have a completely new lease on life and for the first time in years, I actually feel good. It's insane how much chronic pain changes you, and you get so used to being in pain you forgot what life was like before you had pain. I am happy. I am free of my giant painful uterus. It is AMAZING.
My advice to all women is DO NOT GIVE UP. Do not feel ashamed. Do not be silent. Be open, be honest. Find a support system whether in real life or online. Get second, or third, or fourth opinions if you are able to. I support you. I believe you. You are not crazy and your feelings are valid.
My advice to all women is DO NOT GIVE UP. Do not feel ashamed. Do not be silent. Be open, be honest. Find a support system whether in real life or online. Get second, or third, or fourth opinions if you are able to. I support you. I believe you. You are not crazy and your feelings are valid.
