From the beginning. where is the beginning?I guess I’ll continue writing until it feels right.
I’ve always longed to be a mother as many women do. I never thought anything would stand in my way. I never believed that I would have something that would prevent me from doing so. The first two times I miscarried,I was with my first husband. I lost my f irst Angel in beginning of December of 2005. Then we tried again and I lost another Angel In June of 2006. I left my first husband because he was physically and mentally abusive.
Then I met my current husband in August of 2006. We had been living together for about two years and we both wanted a baby and I thought maybe it was my ex-husband being abusive that made me lose my Angels. So, Charlie (then my boyfriend,now my husband)and I tried. We finally became pregnant. I was petrified of losing again. The doctors told me that it was “normal” for me to have ovarian cysts(which I was also told the first two times I was pregnant).Charlie was very positive and I was so scared. I began to have intense pain in my lower abdominal area and I didn’t want to say anything to Charlie. I didn’t want to scare him. I wanted to believe Charlie. Then we had our first ultrasound at 6weeks and for the first time I(we) saw a heartbeat,I was so relieved. I believed that maybe it was the stress that had lead to my first two miscarriages. Two days later,Charlie and and I where at the Emergency Room sitting behind us was the Virgin Mother carrying baby Jesus. I was in tears, I knew something was wrong. Charlie and I lost our Angel two days after we saw the heartbeat in April of 2009. I planted all three of my Angels memorial gardens.
After the loss I put myself on birth control pills. I wasn’t ready emotionally to go through another. I felt like it would never happen(going to full term). Charlie and I where separated emotionally from each other those two years after the miscarriage It almost ripped us apart.
I started requesting my medical records around 2008. I recently went through them and I repeatedly told doctors that I was having abdominal ,hip pain and shoulder pain. I was sent to physical therapy which made everything worse. I was also sent to a pain therapist (which I didn’t know what kind of therapist she was at the time until recently). No one believed me,I felt as though the doctors looked at me as a “pill seeker”.
The shoulder pain went on for a couple of years before an orthopedic surgeon saw that I had broken my collarbone. I had surgery in December of 2010 to shave off a ton of bone spurs. Which then after recovery I have almost no pain in my left shoulder and no pain in my upper back.,GO FIGURE!
They (doctors) pushed me and pushed me to to start taking anti-depressants. Didn’t they realize what I had gone through in my life. That it wasn’t the “fake pain in my head” that was causing my tears, it was heartbreak. I guess doctors aren’t taught to have compassion,that’s how I felt anyhow. They (doctors) put me on all kinds of drugs, anti-convulsive drugs(seizure medication) for Fybromyalgia. All of these drugs made me forget things, I mean forgetting things like how to spell the word “the” or in mid- sentence I would totally forget what I was talking about. I took myself off of these types of drugs. They did nothing good, they didn’t take any pain away.
I was sent to numerous specialist,all claiming there was no physical explanation for my pain. In July of 2007 I had a Colonoscopy . I was complaining of pain due to bowel movements,which were extremely painful and caused me to pass out. Nothing was found again. In August of 2007 I had an ultrasound done that showed an ovarian cyst which was about 5cm. The cyst burst, in the ultrasound there was, what I was told, blood on my pelvic floor. I went to the Emergency Room the next day and they gave me intravenous pain medication and sent me home.
My first Laparoscopy was in October of 2007. That is when I was diagnosed with Endometriosis.There was only a small area on the outside of my uterus (purple,black little dot looking things) that I was shown by the surgeon via pictures from the surgery. With the use of birth-control pills and the removal of the Endometreosis . I was free from pain until I began to notice pelvic pain while I was running. (I love to run. I have been in several 5ks.) The pain continued into 2010. It became obvious in the beginning of 2011 around March that “it” was coming back. I was still recovering from my shoulder-surgery and they where giving me pain killers which probably help with the Endo pain.
In June of 2011 I went with my husband, Charlie, to his brother’s wedding on the east coast. While I was there I moved around a lot more than I usually do at home. I was bed bound,at home,using Tramadol to take SOME of the pain away. Charlie was in the wedding party and we went to the reception where I danced a whole lot,lots of fun! The next day I paid for it. I was in so much pain. I couldn’t walk I could barely sleep. When we got back home(Duluth,MN) I went to see an OB/GYN. He told me he could do surgery but he was suppose to be on vacation and i felt he was doing us a favor.
I had the Lap done in August of 2011. The surgery took about two and half hours,it was only suppose to be around 45 minutes to an hour. My husband told me that the picture that the surgeon showed him looked like a rainbow of colors and the surgeon told him that it was on my bladder all over my pelvic floor on my uterus everywhere near my bowels and on both my ovaries,the surgeon also removed a Chocolate Cyst and he said he sent it in to be biopsied. This was suppose to be a day surgery. The nurses sent me home without permission from a doctor(my surgeon had left to start his vacation and wasn’t there to answer any questions and apparently there where no other doctors there to answer the nurses questions or to sign me out to be discharged). I could not urinate they put a catheter in me three times. I was very very bloated and I could not urinate. They sent me home with a catheter which I then took out the next morning. I had to call a doctor that morning (as I was instructed by the nurses who “took care of me”) to “ask” if I could take the catheter out, he said yes.That whole surgery/recovery was very suspicious to me. I guess that was the nurses way of covering their asses since they weren’t suppose to send me home without a doctor approval to discharge me,because I could not urinate on my own.
I went to the follow up appointments and my OB/GYN said there where no pictures of the surgery even after two months. He then put together a couple pictures from other patients he had done surgeries on and covered there names to “show” similiar adhesion/scaring/Endo from which he removed.I find this very suspicious as I wanted to see what he had “done”. I wanted him to cut the endo out not lazor it out, as I had asked him to do. I do believe he did not try to as I requested. It wasn’t too long after my surgery that the pain came right back and now its way worse.
I went to the Emergency Room AGAIN, sometime after the surgery and they had me wait FIVE HOURS!.There was even a doctor in the waiting area,going around asking how everyone was doing,he didn’t even look at me! I was sitting in a wheelchair next to a girl who was trying to get”tips” as to how she could score some pain pills.When I finally got into a room. they had me scanned to see if anything would show up,another cyst! The nurses then reveled that they make people wait,like they did to me, to make sure the pain was real. I was astonished,this wasn’t what doctors and nurses are here to do. That was one of many times doctors and the health care system had failed me.
I recently had another CT done ,my Primary ran the CT to see if I had something else wrong and low and behold another cyst. I am seeing my primary(who is a wonderful doctor) and he is helping me with my pain management, as my OB/GYN would only gives me pain medications for “acute pain”, which he knows my pain is chronic. I have been being pushed and ask over and over again to take hormone therapy,which if any of you ladies know it only helps for a small amount of time and they have horrible side effects and some are irreversibly. No one knows this pain except for us ladies and young women.
I set up an appointment with a specialist in April,who is about 3 hours away but he only deals with Endo patients. I have a lot of faith about this. I will be asking for ALL of my medical history including the unknown pictures the my OB/GYN surgeon had done in August of 2011. I am also seeking grief-loss therapy for a possible hysterectomy and for the loss of my three angels. I will be seeing my OB/GYN in March and I will ask to see the pictures again(the Laparoscopy ,at that point it will have been 6 months since the surgery. This has been VERY frustrating. My primary doctor has been the only person who has been helping me through this. I am doing everything to help with my pain. I use cold/hot therapy,warm baths with Epson salt,aromatherapy,massage therapy and I am Prescribed 30mg of Extended Release Morphine and 10 mgs of Oxycodone for “break through pain”. I see my primary about twice a month for the last two months.’
There are countless times that I was never listen to, even my family or my husband. People who love me. It is this horrible monster in the closet that you can’t see . You feel completely alone. The hardest part for myself is that I won’t be able to have a child…I know you’ve heard it too,”You can adopt” or “Try again there are medications that can help you”. No! I won’t do that to my body and yes I want to adopt but I need to have my life back. I want me back. I use to run,do yoga,sew,paint and meditate. There have been many days where I could do NOTHING! I can’t work so I’ve started doing research on how to start my own business at home. I’m also going to school to get certified in Medical Billing and Coding.The school I’m going to allows you to go at your own pace, which is a blessing.
So I was suppose to have my hysterectomy in June 2012 by Dr Angelots(second opinion) but my insurance got canceled RIGHT BEFORE THE SURGERY!!!!$%^#$%# So I didn’t get my insurance back until August 2012. So I had put off seeing my OB/GYN and for good reason! He came into the room and was ready to talk about a hysterectomy,which I was ready to do with the advice of the 2nd opinion. Dr Widstrom didn’t look at the second opinion. He said “they are wasting money”. REALLY!!! Then he said that he would ONLY take out my uterus and everything else tubes ovaries but NOT the bloody scares all over my pelvic floor all over my bladder my bowels my uterus. WTF!! He became arrogant and said all the doctors here do this for endo patients,so I then I asked him “Do you have any endo patients that have had the surgery and under your care for AT LEAST 5-10 years post surgery -the way you think it should be done” His ego then was obvious. He would not look at this second opinion and I told him”you gave me information that discounts the way you do the surgery-leaving all of the endo behind.” He was like we have a robot(f0r surgery trying to be a salesman)…what really, I almost wanted to laugh.
So now November 2012 i am going to try the “Endometriosis Diet” and begin to run again(I have a new look on pain because of a new endo sister who runs). I am scared out of mine to be castrated. So now I am searching for someone locally(Dr Angelots is three hours away and I want my recovery to be at home) for a hysterectomy. Maybe I want need it with this “diet”. I have hope again. This will not defeat me.
Above all,I am telling my story because I want young women and girls to have a chance at going to school,getting married,having a family and possible one day finding a cure. Awareness is the key. Talk about it,tell anyone you know. Never feel ashamed or feel as though your crazy. I hope my words find there way to the doctors and health care professionals that take care of us, so we won’t have to suffer.
Thank you for listening to my story.