I know that several of you have either taken this journey already or will be taking it yourself but I would like to share my experience with you in hopes that you will get a glimpse into what it is like to go into the unknown. My journey started with a diagnosis of Polycystic Ovarian Syndrome at 18. I had always had problems with my periods, I started at 13 but then I didn’t have another one until I was 15. I had sporadic periods and the pain would intensify with every one I had from then on. I went to Planned Parenthood when I was 18, as I didn’t have a regular OB/GYN, they did a pap test on me, I almost came off the table as the doctor pinched me with the speculum, and she said that since my “situation was so far outside the realm of norm,” she was going to have to refer me to an high risk OB/GYN. At that point, I hadn’t had a period in 2 years. Thus began the roller coaster ride.
I started to see the OB/GYN, which then prescribed birth control pills for me to take to get my periods under control. That is when the facial hair began to really grow in fast, she then added a water pill to make the facial hair stop growing, it didn’t work but I sure did have to go to the bathroom a lot. I changed birth control pills 3 times that year. One made me bleed, one made me sick and one made my hair fall out. I started to have pain in my abdomen and that is when I started getting the large cysts. The pain was unreal. I would usually end up in a hot bathtub full of water, soaking, that is the only thing that would ease the pain.
I got married at 26, Richard and I wanted kids very badly. We tried for 3 years to have children. We went to my OB/GYN, she put me on Clomid, a fertility drug and had me taking my temperature to check for fertility everyday. It was an exhausting process. I had 3 pregnancy tests come back positive and I was exstatic! I had all the symptoms of being pregnant, I was nauseous all the time, I had the breast pain, I was gaining weight, everything, so I called the doc. She gave me a due date of January 21 over the phone and scheduled me for an OB workup and ultrasound. I went in for the appointment and when I went for the ultrasound, the woman, very rudely, demanded to know just who told me I was pregnant. I told her Dr. Yablonkski told me and she said, again, very rudely, “there’s nothing in here, take off your underwear!” So, I did and she shoved the ultrasound wand inside me none to gently and she told me there was no baby growing inside me. I was absolutely beside myself! I was crying and I just wanted to go home and grieve but they made me wait to see the doc. When she finally showed up, she wanted me to take more Clomid and Provera to get rid of my lining. When I told her I didn’t want it, she told me I was being “irrational and overly emotional,” and that I needed to just get back in there and try again. She gave the scripts to Richard, he tore them up, threw them at her and we never looked back.
We went to another OB/GYN at Riverside before I found the one that I have now and she did and exam and told me that I had a chemical pregnancy. She didn’t really explain anything to me. While doing the exam, she found a polyp on my Cervix and she said I might feel some cramping and she removed it with no anesthesia or anything. It was so painful that I had to bite my lip to keep from yelling out. Needless to say, I never went back to her either.
I went to see Dr. Atwood that spring. She looked through my records and saw what happened with the pregnancy that almost was, and she started asking me questions about it. When I told her what the woman at Riverside told me and that she never explained what it meant, she just shook her head and apologized to me. A chemical pregnancy is when the sperm and the egg get close enough to meet but they don’t fertilize into a viable pregnancy and they send out the chemicals to the brain that you are pregnant. It was nice to finally have an explaination of what had happened to me, I thought I was crazy, that was in 2004. We tried a couple of different types of birth control pills to regulate me but getting my diet under control actual did the most good. I was eating more healthy and walking 2 1/2 to 5 miles a day and it did more than any pill for my system. It regulated itself and I could almost set my watch by it. Then I had my first big nervous breakdown. I didn’t care about anyone or anything and I took to my bed.
I started to have pains again with my periods in 2006, it was gradual at first. I would get nasty cramps to let me know I was going to start and then I would be fine after that, then it would be for the first day then I would be fine, then it got to be almost everyday. This became habit so I had gotten used to carrying Ibuprofen in my purse and having it in my locker at work, 1600 mg and I would be able to make it through the day, then 3200 mg wasn’t touching the pain anymore. 2008 comes and the pain in my abdomen ends me up in the ER more than once. It was actually a saving grace. I had a CT scan done and they found spots on my lower lobe of my lungs. After several tests and scans and one cancer scare later, they found that it was Sarcoidosis, not cancer. That is when we first started talking about hysterectomy. That to me was a death sentence. I just knew it to be a dark, scary thing that was going to hurt and that was going to make me stop being a woman!
I suffered for the next 2 years with cramps so bad that they started in my abdomen and went clear through to my lower back. The ONLY thing that made it better was either soaking in a hot bath or I was plugged in with a heating pad all day, everyday! It was so bad toward the end that the pain was radiating down my legs. In 2011, started to get heavier periods and I was passing blood clots the size of baseballs. I was weak and I was sick all the time. I made the appointment with Dr. Atwood and I told her about what was going on and she just asked me, “are you ready yet?” It was then I decided that I had to do the right thing and end the pain and the suffering that I had been living with for YEARS. I didn’t realize how bad it was until she asked Richard how bad it was and he told her that I couldn’t function even to do basic everyday things. I didn’t think he was noticing or that it was effecting him, but it was. We tried for almost 10 years to get pregnant and it was killing me that this was how it was going to end but all Richard said to me was that he wanted me to be ok, that was all that mattered to him. I am thankful and blessed to have him. He was feeling it too.
She scheduled it for October 4th 2011. I had 3 weeks to get used to the idea and believe me, I was terrified! On one hand, I was at peace with the idea. I was tired of the pain, I was tired of being tied to that blessed heating pad, I just wanted it to be over. On the other hand, I was in mourning for the fact that I was 38 years old and I would never have the one thing that I wanted the most in this world, children. I would never get to feel what it was like to carry a child in my womb, I would never get to feel the agony of childbirth. It was just going to have to be ok.
The morning came, and I was nervous. We didn’t tell anyone but my dad and Jane, our good friend Lora and our dearest friend Kelly that I was having the surgery. I needed to be focused on myself and getting through whatever was going to happen on that day. No one was with us at the hospital. I went back and they prepped me for surgery, everyone was really nice, they are at the hospital where it was done. I was so cold, it was freezing back there. I don’t remember anything else til I woke up in my room.
I woke up with Richard and my dad and Jane with me. I just remember wanting to get out of bed right away. I was still groggy. Richard always buys me a stuffed animal when I have surgery, he bought me a TY Bat, my dad brought me some beautiful flowers. I was talking to them and all of the sudden I told them I was going to be sick and it just came in waves. I couldn’t stop, the only thing I can think of now is that I was on a Morphine drip (your best friend) and I hadn’t had anything to eat. The nurses came and changed me and changed me bed and moved me to the room I was going to be in from then on. My bladder didn’t seem to want to cooperate for 24 hours after the surgery. I had a catheter in and I was drinking one of those 32 oz cups of ice water an hour and I wasn’t putting anything out. They were getting very concerned and kept doing ultrasounds on my bladder but it finally turned around right before I was let go to go home. I was told that what she found when she got in my abdomen was that my ovaries were the size of small potatoes and covered with sacs of blood and that scar tissue was beginning to attach to my bowels so instead of leaving my uterus and one ovary like she planned, she had to take everything.
I had staples across my abdomen. They don’t suture you after the hysterectomy. It wasn’t as bad as I thought it was going to be. It was completely numb across there so I didn’t even feel them, except right before they were to come out, one was getting infected and it was pinching a little . I didn’t feel it one bit when she took them out, it was all still numb when she took them out. I haven’t had any pain since she did the surgery and I am so relieved! I am still numb across my abdomen a year later, but numb I can live with. This is a decision that I wrestled with, am I still a woman, yes. Am I still grieving, some. Do I regret it? No! It is something that we go through as women because our bodies are flawed and need to be corrected, not because there is anything wrong with us as women!
I hope that this glimpse into my journey helps to ease a fear, to let you know that you are not alone.
© Karen Wengert
Children Of Vietnam Veterans Health Alliance