Jackie's Story
Hey guys!
My name is Jackie Thomas, I am 24 years old and I have been suffering from Endo for about 9 years.
It all started back in grade 10 (Age 15), I was having severe side pains for about a week and finally one night I couldn't move. My mom and Dad took me to the emergency room where after a ridiculous amount of tests and ultrasounds, they thought I had appendicitis.
They finally got the ultrasounds back and it was determined that I had ovarian cysts. After spending the night in the hospital for observation they released me and told me the cysts would dissipate in time.
Fast forward a couple years and I was still having severe pain before and during my cycles. My family MD advised me that everyone can have crappy periods and that it is nothing to worry about. Despite the fact that my Mom had a totally hysterectomy from Endo a few years prior meant nothing to her and it was decided that there was no need to pursue alternative investigation. I was told to take Tylenol and stay on the birth control I was on since I was like 14 and be on my way. I would miss time off school because I could not move, I had a hard time walking to school and partaking in gym class and just felt sluggish and like crap more and more.
Grade 12 rolls around and things still were not right. The pain was coming more and more and was lasting longer and longer. On top of preparing to graduate High School and having a full course load I was missing time off work and school because I was hunched in a ball and was not able to move. Around this time I was also starting to experience the acne and the headaches that accompanied my Endo that was STILL undiagnosed.
Graduation came and went and I started working full time. I went to see my family MD a few other times and was prescribed more pain meds (which is fun because I cannot take any anti- inflammatory). One of the times I went
To the MD there was someone filling in for her. She looked at my file and was concerned about my symptoms. That was the first time PCOS (Polycystic Ovarian Syndrome) was mentioned to me.
I did not have all the symptoms of PCOS- we ran it by the family MD upon her return and she did not feel STILL that there was anything wrong and there was no further testing completed.
I think one of the reasons why the family MD did nothing was because she still sees me as a child. She has been my MD since I was born and maybe still sees me that way.
About a year after this visit I almost passed out a work because of pain. I was so out of it all the time. I always had headaches, I was sluggish, no energy and just didn’t feel "right". A co-worker of mine convinced me to go the family MD and just tell them that I wanted a referral to an OBGYN.
I went to the OBGYN- first of all, everyone who is in those waiting rooms are looking at you like a baby is about to crawl out of your belly button. No one realizes that I may be someone in my early 20's but it doesn’t necessarily mean that I am expecting!
The OBGYN stayed with me for a long time and asked me my history, my family history and about all of my symptoms. After speaking for a while she advised me that she would like to set me up for a laparoscopy to determine the issue. I had left the office with the OBGYN telling me that she was 98% sure I had Endometriosis.
The laparoscopy was right. I did have Endo; I had a lot of old growth for being undiagnosed for so long, as well as a lot of new. So now, I was dealing with the pain, the stress of the word disease following me, and my new symptoms that were including, food intolerances. I was having symptoms that now followed along with IBS which is never fun!
The OBGYN was excellent at the post op. She told me that she thought that it could be removed/managed/"cured" with a laser surgery. For the first time in my life I felt validated and understood. That being said, I was terrified. I was just told that I had a disease! I had a disease that not only has been hanging out in my uterus for years, but could end up preventing me from having a child!! I remember being told that it looked like someone took a cigarette but to my ovaries. (Quite the mental photo eh?)
I decided that if I am going to have this disease that I did not ask for I was going to educate myself the best I could. I bought books; I read articles and started to keep a pain diary.
I went for the pre op with a different OBGYN (because the other one couldn't do the laser surgery) and I walked out of her office without a surgery date. I went in there with my head held high, my big girl panties on and my Mom by my side.
I left without a surgery date because I could not STAND the Dr. She was very condescending and was not very kind. She basically told me everything I learned, felt, said or did was wrong. That everything was incorrect and only she knew what was right. I was talked to like a 5 year old and didn't need it. I asked the original OBGYN for a referral to a different specialist.
This new specialist was my first male Dr and he knows his shit. He is a straight shooter, listens and understands. We scheduled the laser and I anxiously awaited my "cure".
During the waiting time between the laparoscopy and the laser was tough. My body was TOTALLY against me. I was in more and more pain, I was missing A LOT Of work and I was missing out on social activities because I wasn’t able to move. For the year and a bit before my laser surgery the pain was constant, it was no longer just near my cycles but always and the IBS-like symptoms were hell.
The day of the laser surgery was another day when my "Big Girl Panties" were required. I did not sleep the day before and I was scared. I was not looking forward to more scars, pain meds and healing. The new OBGYN completed the laser, got everything and advised me that it was close to my bladder and bowels as well. We lucked out- for now we were out of the woods.
I healed, went back to work and was ready for my new found freedom.
About 1.5 months after the surgery I was feeling pain again. I was trying to put it out of my head and was telling myself that I was nuts.
It soon got to the point where I was hunched over again and requesting pain meds. I knew it was back. I was told right off the bat that it was not a cure-as there is none- I knew there was a chance that it could come back. I went back to my specialist.
We spoke about different options and decided on Lupon Depot injections. Ok so this $400.00/month shot that gets injected into the fat part of your ass is not fun! I will be the first to tell you it does hurt. I have tattoos and can take needles but this one is painful.
After a lot of back and forth we decided that I would do the Lupron for 6 months. The Lupron puts you in Menopause! Ok.. I live with my best friend who is a guy! Please take this as my apologizes for my hot flashes and mood swings!! I felt like I had the body of a 60 year old woman but the PAIN WAS GONE!!!! I was able to do things I wanted to do, I could work out again, I had ENERGY, and I could walk around the mall without having to take a break! Also, most importantly I was off the crazy pain meds.. Things were going well. The hope was that after the 6 months of Lupron that it would keep the Endo at bay and that I would be pain free in the hopes that when I was ready I could have children!
The last shot faded right before Christmas 2010. I was hopeful that for the first time in years I would have a pain free holiday but I was wrong. The pain came back and I was mad. I now had to decide what to do.
I stayed off the Lupron until January 2011 and decided that I couldn’t keep missing work- my specialist prescribed me the higher dosage of Lupron (which costs more ) and we decided we would re evaluate after a month to see if that works.
The pain went away and we decided that staying on the Lupron for now would work.
This brings us to today. At my last appointment, my specialist asked me how long I want to be on the Lupron. My response was "not forever". I have always wanted to be a Mom. It is the single most important thing that I want to be, and do. I want nothing more than to be able to swing my little one on a swing and to take them to the zoo and to sing them to sleep and read them stories. I want to dress them and shop with them and cry when it is time for them to go to school. HOWEVER with all of this I knew that Endo was kicking my ass. Because I don't have the little one to worry about -I am left making sure that I make the best decision I can for myself. I cannot keep putting my life on hold. I also cannot run out and get pregnant. I am a single girl who lives with a roommate and is trying to find my way through life.
With all of that being said, we have decided to do a hysterectomy. I am now booked this fall for a complete hysterectomy. For the first time I feel in control of my disease. I feel like I am the one in control and that it cannot bring me down.
I will not lie; even though I wholeheartedly know that it is the best decision for me I am still sad. I am still envious of those people I know from high school who already have their kids, of my little sister who as far as we know can still conceive and I am sad because I know I will not be providing my parents with a biological grand baby. I am now getting to the age where my friends are getting married and having kids. I am behind, very behind.
I also will admit that I try to use humor as my way of coping- to avoid the elephant in the room. I think that starting this Awareness group/support group will help me cope and deal with what my future holds.
So I will still be going to get my Lupron shots until my surgery- I will keep you guys posted!
I will still put my Big Girl Panties on to go and wait in the office while everyone has their big bellies of joy. I will sit between the pregnant 28 yr old with her adoring husband and the lady who is from the cord blood donors program who is waiting to talk to the pregnant patients. (PLEASE do not make the mistake and ask me because I may hurt you)
I am a firm believer that everything happens for a reason, I have thought that forever. So we will have to see what this reason is. All I know is that life is too short to limit yourself; it is too short to be mad about what you have or don't have. I will kick Endo's ass and hopefully be able to help other women with it.
Just remember, because we don't LOOK sick, we are.
Thank you everyone for reading my bio! Let me know if you have any questions!! Stay positive, keep on smiling and whenever you are having a bad day, listen to "its my life" by Bon Jovi. Always helps me!
Jackie.~
UPDATE: Aug 30 2011
Hi There!
Just wanted to touch base with you guys and give you an update on my Endo- Enemy!
Since the "About Me" has been posted a lot has changed.
I received my last Lupron shot the beginning of May 2011. I was SUPPOSED to have a complete hysterectomy on August 3rd. That did not happen. After talking with my specialist and doing some additional research [ you know, because I never have enough to read lol] I decided to hold off. There are other options that I wanted to try.
My Endo has since been flaring up more, and I have been exhibiting symptoms that mock Fibromyalasia- so needless to say YIKES! So, I am now doing tests to try and rule out the scary Fibro word and to see what could be causing these muscle, joint, and sensitivity issues.
Other than that I am also trying Gluten free, ITS HARD!! The ONLY thing I have in my house that has Gluten is Pretzels, and they don't bug me too bad :) so they can stay. They are a weakness LOL
So I am maintaining with the diet changes, I have been going to the gym more, and I am not as stressed as I was.. I am hoping to see changes soon. I am also getting referred to another specialist to see what they think.
Stay tuned.. there is never a dull moment with Endo :)
~jackie
UPDATE: JAN 2012
As you can tell from my last blog entry.. I have confirmed that I am going to have a complete hysterectomy and that will be taking place in April. I am a little nervous, but I am ready to start the next chapter of my life... time to positive think and hold my head higher!
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© 2011 - Endometriosis Awareness KW