Wednesday, 1 November 2017

My story: Barbie Maguire



My story is probably the same as so many others but I wanted to share mine. As many others, there is a lot of pain, tears, pain pills, heating pads, missed days and everything else that goes along with the horrible disease that we know as ENDOMETRIOSIS.

Growing up periods were just so painful for me. My mother didn’t really give anything a second thought and she would tell me to just get over it and she would give me a Midol and tell me that I would be fine, however, 9 times out of 10, the Midol made me sick and I would just be in such pain that I would sleep all day and cry when I was awake because the pain was that bad. It wasn’t until I moved in with my grandparents at the age of 14 that someone actually listened to me when I said I was in so much pain. My grandmother would let me stay home from school the first few days of my period because the pain was just unimaginable. No one really ever thought that there might be something wrong, they just all assumed that I was one of the unlucky ones who had pain with their periods, if they had only known the road that was ahead. For as long as I can remember, I have never had a period that wasn’t just extremely painful. I was 20 when I had my first cyst rupture, or at least it was the first one that the doctor told me about. I was on the Depo shot at the time and it happened at work. I doubled over in the kitchen and had to have my mother come take me to the hospital. I had just had my gall bladder out a few months before and they were afraid that my appendix was acting up. I got to the hospital and they tell me that I had a huge cyst rupture, I had no idea what any of that meant. They changed my birth control and said I should be fine.

July 2005 was the worst month of my life. I ended up bleeding for 26 days and it wasn’t like I was just spotting, I literally thought I was gonna need a blood transfusion. Saw my doctor and all she said was that stress can cause lots of problems, so try to distress your life. Fast forward to July 2006 and I just had it. I had fell into a deep depression because I was just so sick and tired of living my life in pain. I wasn’t on a steady birth control because I didn’t know what was going on and I was missing work left and right (really surprised I didn’t get fired). My grandmother finally stepped in and made me make an appointment with a different doctor and she even actually took me to the doctors appointment. Imagine being 24 and having your grandmother take you to the doctors office, I was horrified!! My sister had been diagnosed with stage 4 a few years before me and had undergone multiple surgeries before this and had already started one round of Lupron. I had talked to her and didn’t really think much of the endo because we didn’t have the same symptoms so I just really kinda blew it off. When I was at the doctors office I told him about my history and about my sister and he tells me that I had about an 85% chance of having the endo. He did an exam and an ultrasound and told me that my left ovary was just covered in cysts and that my right ovary had 2 rather substantial size cysts on it. Low blow is exactly what I was thinking. He told me he wanted to do surgery because he knew I was going to have endo. We scheduled the surgery for 6 weeks later and even up to that point, I really didn’t think I was going to be diagnosed with endo. Sadly I was diagnosed at Stage 2 and PCOS. I was immediately put on Lupron and endured 6 months of hell. That round of Lupron was absolutely brutal and my first period after the Lupron was the absolute worst one I have ever had. I was in so much pain, that I almost went to the emergency room because nothing was helping with the pain, the doctor even told me to go to the ER. They put me on a new birth control and the same cycles continued over and over again. I eventually gave up on the doctor after he told me that I probably wouldn’t have kids and just gave up in general.

A little over a year later I had another cyst rupture that landed me in the ER yet again. Once again I was at work when it happened and had to have someone rush me to the hospital. I was home for a week in such horrific pain that I ended up making 2 trips to the ER that week. Now I’m not one to take pain pills because my family has a lot of addicts in it, so for me to ask for pain meds is serious and it means that the pain is off the charts. I ended up finding another doctor and begged for a hysterectomy. She told me that she wouldn’t do that because I was only 26 and I hadn’t had kids yet. We scheduled surgery after she found a large cyst on my left ovary and during the pre-op appointments I made it clear that I wanted everything out, so when I signed my consent forms, I signed for an emergency hysterectomy if need be. The cyst on my left ovary ruptured before the surgery and a large cyst had grown on my right ovary before the surgery. Sadly when I woke up, I realized that everything was still inside, I wasn’t granted an emergency hysterectomy. I felt OK for about a month or so and then the pain came right back. I was put on a continuous birth control and she hoped that it would prevent me from having a period, but that wasn’t to be the case. Just a little over 2 years after I finished my first round of Lupron, I was put on it again to battle the endo. The second round wasn’t nearly as bad as the first, but being only 26 and having gone through menopause twice was just frustrating.

I have tried just about every birth control out there, many different types of pills, the shot, the ring, the patch and lastly the Implanon. When I got the Implanon, she said that most people don’t have periods on it but that wasn’t the case for me. I had them and they were still just as painful. I had my third surgery in December of 2011 and nothing changed. The pain I had after the surgery was not from the surgery or the recovery process but from a period that came 2 days after surgery. It was absolutely heart breaking to know that the pain came back so quickly after surgery. When I went back to my doctor she referred me to a fertility doctor that specialized in endo. He started out so well and then he told me about some crazy surgery he wanted to do. He told me about a surgery in which he could burn the nerve endings in the base of my cervix that would alleviate the pain. At first I was all about having the surgery because he told me that I wouldn’t have anymore pain. When the insurance company denied coverage for the surgery I realized that I needed to get a second opinion. I spoke to my other doctor and she told me that it was a horrible idea and so I decided that I just wasn’t ever going to get any relief.

June 2012 the doctor told me that she would be more willing to give me the hysterectomy that I wanted because I had turned 30 and she was afraid that the endo had moved into my uterus muscle and that there was no chance of fixing that problem. I told her that I had a time frame I wanted to wait out if I could and that was the last time I would see her for seven months. That was the longest time that I went without seeing her, I was getting used to seeing her and her staff because it really felt like every other month I was getting an exam or an ultrasound to check on things. January 2013 everything fell apart. I had been living with some extreme pain for about a month and finally had enough and made an appointment to be checked. I had an ultrasound and found out that I had two large cysts, one on each ovary and she told me I needed to start thinking about my future. I did a lot of soul searching that weekend and I have blogs up on my blog page about all the thoughts that went into my decision. My first appointment was on a Thursday and by Monday my hysterectomy was scheduled for April 3rd. I finally just gave up the hope that biological kids were ever going to be in my future. I learned from the fertility doctor that my egg reserve was really low and that I would have to go through IVF if I wanted to get pregnant and even then I wasn’t promised a baby. My sister was adopted as a baby so I realized what adoption could do for a family. My sister also had to go through IVF to have her miracle baby and knowing what she went through, there was no way I was even going to attempt it.

After my hysterectomy I realized that I made the best decision that I ever could have made. I learned that my one ovary was stuck to my bowels and the other was stuck to my pelvic wall, this was what was causing me so much pain for the last few months. Scar tissue and new endo growth had done so much damage to my ovaries that the doctor was really surprised that I didn’t come in sooner. During my post op appointment I was told that there was a rather large tumor on my left ovary and that eventually I would have had to have everything taken out regardless. Luckily the tumor wasn’t cancerous but it still scared me to hear that. I also found out that the endo had impacted my uterus muscle and that ADENOMYOSIS was eating up my uterus and my chance of having a biological child was non-existent.

Now I’m figuring things out about menopause as I go and dealing with finding the right hormone for me. Now instead of living in pain I feel absolutely amazing. I had some minor cramping for a few weeks and the doctor told me it was normal since my body is adjusting to having organs gone and not having real hormones. I made the absolute best decision I possibly could and don’t regret it one bit. I love not living in pain and not having to worry about pain pills or heating pads or anything else that I dealt with before my FINAL surgery.

One thing I said before my surgery is that I was ready to live the life that I was meant to live instead of living the life that held me back because the pain was just so intense and would ruin my every day life. I am almost 2 months post op at this point and have never felt better. It's weird to not feel pain every day and I just absolutely love my new outlook on life, praying that the horrible endo is gone forever!!!

I started this blog 2 months after my hysterectomy in 2013 and I know that things have definitely happened since then! Three months after my hysterectomy, I met the man I thought was going to be my forever. Instantly I felt like I had made a mistake about taking everything out. He so desperately wanted to have a child and I wasn’t able to. Luckily we talked about everything and decided that we would adopt after we were married because that was the only feasible thing for us to do. Sadly our relationship didn’t work out but the desire to be a mom hasn’t changed, maybe one day I’ll get to experience the joy of motherhood.

Over the last 4 years my body has gone through some CRAZY changes! I have gained weight, lost my smile, lost myself and have somewhat tried to forge ahead in the journey of life. The first thing I noticed after my hysterectomy was the fact that I was CRAZY with emotions! Things that never would have affected me were all of a sudden making me cry at the drop of a hat! It was absolutely unreal how much I changed when they took out my ovaries. I have had to try multiple hormones and four years later I am still trying to find my balance.

Hormones are no joke, they rule your life. The first pill I tried right after surgery sent my blood pressure skyrocketing and the doctor was concerned. I was quickly changed over to a patch and that was a rollercoaster for a year. My poor doctor has gone through so much with me and I am so very thankful that she never gave up on me! My patches were changed twice and the last patch worked for about six months. I lost weight, my hot flashes were under control and I felt great, then there was a lot of personal stuff that happened and I plummeted into a depression that I am still trying to get out of. I have since had to have my hormones changed three more times and I still don’t think that they are under control. My body is completely HOT all the time, I sweat when its 20 degrees outside, no joke! It's super cold outside and I’m sitting inside with 3 fans on in my room, a tank top and shorts! I can’t win, I really can’t. My grandmother warned me about having my ovaries out but I honestly didn’t think it would be this bad! Boy I was wrong! Not only do I have to worry about getting my hormones under control, I now have to take anti-depressants, anxiety meds, allergy meds and blood pressure meds! Things really did change after my hysterectomy! I don’t regret having my hysterectomy because honestly, I’ve had 4 years of very little pain. I cramp every now and then and sometime freak out thinking that there was something left behind, but for the most part, I’m good with everything. I made the decision I did because I was tired of living in pain. I was tired of taking pain pills, living with heating pads, frequent doctor visits and countless surgeries. I made the decision that was best for me. Now I’m learning to live on fake hormones and countless other pills that I now have to take! Guess you give up one pill for another in this journey! I don’t miss dealing with endo and I would never, ever wish that on my worst enemy. I wish there was more spoken about endo and more people were open with their battle. When I was struggling there wasn’t anyone I could turn to. My sister had it and we would compare notes all the time but it got to the point that that was all I had in common with her and it severely affected our relationship.

I have some blogs posted that I wrote during the time that I set my appointment and had my surgery and they are there for anyone to read if they are interested. I questioned a lot leading up to my surgery but still to this day, I don’t regret having my surgery!! By far the greatest decision I have ever made!!


Thank you for sharing your story Barbie.

If you would like to contact Barbie, you can follow her on Twitter @barbiejmaguire, Instagram @keepingupwithbarbie, or through her blog, My New Journey.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.

S.
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