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Cat’s Story (Endometriosis)

Cat's Story EndometriosisHi! My name is Cat, and I am 23 years old, feeling like I am going on 45. I was diagnosed with the possibility of having endometriosis when I was 22. Every time my menstrual cycle came around, I would get the worst cramps on the first or second day and would have very heavy bleeding. Then the pain would subside, and the bleeding decreased. This had been occurring ever since I could remember.

As of the end of last year, however, the pain started to become INCREASINGLY worse, and I was having abnormal periods to where when the pains started, I either would not bleed at all or I would only bleed for a day or two. I had chronic pelvic pain to where, if you were to put my pain on a scale of 1-10, it was a 12. I would scream and bawl my eyes out because of how severe the pain would get. I didn’t understand why this was happening to me all of a sudden. I went and saw my gynecologist several times because we couldn’t understand why this was happening, and she prescribed me with oxycodone to take as needed for the pain. I had to keep getting doctor’s notes to excuse me from work, even though I sat at a desk. I couldn’t even bear to sit up when the pains did occur, and all I wanted to do was curl into the fetal position, rock myself back and forth, and try to brace myself until the pain allowed me to relax or sleep.

Finally, my doctor started thinking of other possibilities as to why I was going through this. This was also when she started to believe it was endometriosis and explained to me what endometriosis was. My mother had it when she was around my age and had a laparoscopy done, and years later, she conceived me and my two other siblings. Since endometriosis can be genetic, along with all of my other symptoms, my doctor was positive that I had endometriosis. She explained to me the different processes of actually being diagnosed and curing endometriosis. I would need to have a laparoscopy done to see if I actually had this and if there was anything else going on down there. Obviously, she also explained what a hysterectomy was, but because of my age and my desire to have babies of my own, we didn’t stay on that topic for long.

So without even doing any other tests, we scheduled for me to have my laparoscopy done at the end of December 2014, and since I am bad at keeping up with birth control pills, we also decided that a IUD was best for me, as it also helps with endometriosis. We figured this would solve the problem and would be a piece of cake, or so we thought anyway. I went to my employer informing them of this and was approved the time off for the surgery and the day off to get my IUD inserted. Unfortunately, with my employer being a law firm and my job consisting of me sitting at a desk, they figured my recovery time would be short (Ha).

After all was planned, my menstrual cycle came around again before my big day. The pain was, of course, just as bad, and unfortunately, my doctor needed me to be on my period in order to insert the IUD because that was the best time to do it. I was told that it would not hurt, but as tender as everything was from being on my period, for lack of better words, it hurt like hell. I screamed a tiny bit, cried, and even hurt the hand of the nurse who offered to hold my hand while the IUD was being inserted. I was told that the pain would go away, but it didn’t. Instead of waiting for me to no longer be in pain, they sent me on my way, assuring me that the pain would die down soon. I started to drive off to work, since I had this done in the morning so I wouldn’t have to leave work early to get it done. The pain was still just as bad, and it definitely got worse. The pain got to the point where I was crying so much and yelling to where I had to pull my car over because I could no longer drive. I felt as if my uterus was about to fall out of me or something was about to rupture. I have never experienced pain this badly in my life ever. I have never had any broken bones, and the only surgeries I ever had done were a tonsillectomy and when all four of my wisdom teeth were removed at once. I called my dad because I was afraid and did not know what to do. He told me to drive back to my doctor’s and ask if I could to have them remove the IUD. He would meet me to drive me back to my place. Instead, I called my doctor’s office, and they told me to go home, take my pain medicine, and they would send a doctor’s note to my work excusing me for a couple of days. I hoped it would help because they did not want to take the IUD out and figured the pain would eventually go away. So I sucked it up as best as I could, called my work to inform them of the situation, and drove myself back to my house. Lucky for me, it wasn’t that far away.

Unfortunately, the pain did not go away. I was out of work for two weeks in a row. The pain was ongoing 24/7. I was on my pain medicine during the whole time, crying non-stop. My uterus still felt like it was about to fall out, and I could hardly sleep, let alone feel comfortable in any position. My doctor had to keep sending work notes to excuse my absences, and unfortunately, this was also just before I was about to go on leave for my surgery. Needless to say, my work was NOT happy about this. I tried to return to work for a day or two, even though I was still in pain. I was called into the office and was told that my absenteeism was an issue and was pretty much given a verbal warning. The funny thing is, my work does not have an attendance policy, so it was strange to be told that my absence from work was an issue, even though I had doctor’s notes covering this. Prior to this, I was absent for a maybe a day or two here or there but also always had a note to excuse myself. I was also promoted in May, 2014 and was told that I had to be there every day. I guess they were not kidding about that.

December 29, 2015, I had my laparoscopy done. I wasn’t really nervous. In fact, I was curious to see what they would find or if they would find anything wrong at all, which was my worst fear, thinking that if they didn’t find anything wrong, then what would happen next? My mom, dad, sister, and boyfriend were all there for me that day, taking turns coming to hang out with me before they took me back for surgery. My sister is in nursing school and started joking with me saying, “I bet you have a teratoma.” She also watches too much Grey’s Anatomy. I was then taken back, and the surgery began. The next thing I knew, I woke up screaming and in pain when they got me to come to from the anesthesia. I was then told some surprising news. It was also surprising to my mother because she actually thought it was going to be nothing and kind of thought I might have been overreacting to the pains I had been having just a little. Moms.

My doctor explained to my family and me what she had found when they started to perform the surgery. I had tons of scar tissue, a lot more than what my doctor had expected I would have. My left fallopian tube was frayed at the ends and had some damage, and last but not least, I had a big ol’ cyst on top of my uterus, leaning on my bladder and bleeding into my abdomen, and it was about to rupture. That explained why I was having so much pain. Due to the extensiveness of my condition, other measures would have to be taken in order to help me get better and to make sure this would not prevent me from having children. My doctor explained that due to the damage the endometriosis caused, if we did nothing at all, it would eventually grow back, and I would have to get a hysterectomy. So the option that we chose was to go on Lupron, which is a shot I would get once a month for a year which would force my body into menopause. This with the IUD inside would shut down everything so my body could have a chance to repair itself. I would also have to take progesterone daily. Most people only take Lupron for 6 months because it does cause bone density loss. However, with my condition, it was decided it would be best to do it for a year. This would allow my body to try to heal, so my chance at creating my own family in the future would definitely happen.

Unfortunately, my doctor still thinks that years down the road, after I have kids and all that, I will likely have to have a hysterectomy. But at least by then I will already have a family of my own and all the kids I want anyway. I would be lying though if I said that everything is solved and perfect since the laparoscopy, but it’s not. It took a little longer to recover from the surgery than we all expected, so work was not happy and demoted me when I returned. I was told that it was also because of my performance, but that is a load of bologna since this was the first time I was told that my performance was any sort of an issue. Of course, I couldn’t fight with the employer, since it’s an office full of attorneys. I just nodded and went on with my day. A lot of my co-workers thought it was very unjust and didn’t understand it either. My supervisor was not happy that my co-workers who were my friends knew of my situation, and she acted like I should have kept all of this to myself. But newsflash, I actually have co-workers who care about my well being.

That being said, being on Lupron and getting a shot once a month (by the way I HATE SHOTS), and dealing with my hormones at a max has definitely been difficult so far. I just received my third shot the other day and I am still learning  how to deal with life in general. I had to call off work a couple of times because I was still getting pains. My doctor wrote notes excusing me, but work still didn’t like it. In March, 2015, on my birthday, my boyfriend’s car exploded on him (long story), and he was rushed to the hospital, so I had to leave work, of course. We live together, and I am his only family here, since his family lives in Indiana. My supervisor is well aware of this. I had to take the next two days off because he needed around the clock care and couldn’t have anyone come and help until Friday. I was told at first this was okay but received an email the next day stating I was fired. It wasn’t exactly the greatest timing. They also put a lot of other junk in there to try to validate the termination because they could not just say it was for absences as they do not have a policy. So to protect themselves, they wrote a lot of negative and outrageous things, such as I was rude to senior administrative staff which I have never been in my lifetime, as well as other accusations. I wasn’t happy working there anyway. I would come home crying every day, but regardless, this termination and my boyfriend suffering from 1st and 2nd degree burns on both arms, making it so couldn’t do anything for himself, and seeing him in pain put me in depression. My dad tried to help me wrap my head around the fact that I have hormones injected in me that make it seem like everything is 100 times worse than it is. But when you are already feeling down, it’s hard to pick yourself back up sometimes, especially when you have so much on your plate and feel stressed out to the max and overwhelmed with everything happening that you can’t control.

Even though the hot flashes and night sweats are not pleasant, the overflowing hormones take the cake. I was fighting pretty bad with my boyfriend over everything for no reason because he would say or do something, and I would get upset and just go overboard with it. Luckily, he is the best man I have ever known, next to my dad of course. He puts up with A LOT and helps me try to work through everything all the time as well. He shows and tells me how much he loves me every day. When I start to get upset and cry harder than ever after a fight, thinking he might leave me because of the way I am acting, he reminds me of our love and that he will never give up on us. He takes this as practice for when I go through menopause again when I am in my late 40’s or 50’s. Without him, my few true close friends, and the close relationship I have with my great family, I would probably be spiraling down on the depression train. I don’t even want to think what could possibly happen, but thankfully, I don’t have to ever think I will get to that point. My mom is my best friend who I can go cry and talk to about anything and everything. Without our relationship, I wouldn’t be able to handle everything.

I have good days, but I also have bad days where I let small things get to me that normally wouldn’t. Sometimes I question why God has me on this path. I’m exhausted whether or not I have been active, cry non-stop over spilled milk, and feel all alone, regardless of whether I am with others or not. Sorry for such a long story. I am just hoping others who have experienced similar things or are going through this right now can relate and shed some light on the situation. I am glad to put everything into writing and see what I have overcome these past few months. It makes me feel stronger, even though some days I doubt I am, but I do believe everything happens for a reason. I try to remind myself that I am going through this so I can secure the future of having my own children and that I have the best support group in the world. Whether or not I feel like it, they are there for me. They still love the heck out of me. And hey, things could be worse right? I also try to keep reminding myself that everything isn’t as bad as it may seem, to take this process one step at a time, and that I have three shots down and only nine more to go. I am 23 going on 45, and the best thing I can do is pray, have faith, and do the best I can to deal with everything, everyday.

Thanks for listening!

Sincerely,

Cat
Florida
Submitted 04/18/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. I’m from Florida as well Cat, I can completely relate to your story and I’ so sorry your going through so much. I pray for all us woman and young ladies that suffer with this disease. I’m 28 and I got diagnosed when I was 24, up until than I pretty much had the same symptoms as every girl who doesn’t know what’s going on and is scared and everyone thinks your making up the pain.

    I had numerous ER visits, the pain was so severe I couldn’t see straight. I cried and cried and most of the time I got treated as a pain pill seeker. They never believed me.

    I’ve had two laproscopies and they removed lots of tissue both times. The last surgery my colon was attached to my ovary. That explained the brutal pain on my lower left side. I experience back pain too, it shoots up my back and into my shoulder blades. It’s horrible, I understand your pain.

    My experience with surgery was successful for one year each time. I was pain free for one year and than the pain came right back and worse. My doctor spoke with me about the pain returning but I was praying that it wouldn’t

    I’m about to see a specialist this week at Shands in Gainsville Florida. I have also suffered with severe depression since I started my cycle at the age of ten, so every hormone therapy we tried created suicidal thoughts. I too was on lupron injections. I TOTALLY understand the side effects, the mood swings, the snapping at people over little things, the hot flashes, feeling like your going to lose your mind. I went through all that as well but unfortunately this treatment caused me to have suicidal thoughts as well and was doing more harm than good.

    My options are slim right now but I’m praying this new Doctor will have a new plan, I want children as well and I want my mind to be stable and not suicidal. Which means my body cannot handle the hormone therapies. This is a very frustrating condition to have, it’s hard to explain it to people and sometimes you feel insane. I know there is hope and that’s what keeps me going. I am a christian and my faith is what keeps me going and the support of my family. I’m still learning and trying to understand it all.

    Please please please email me or contact me on google if you need to talk, I would love to have someone to relate to as well. I went through lupron treatments, so if you need to vent about what your going through, I will listen. Your not alone and either am I , it’s important for us girls to come together and share our stories. It will give hope! I’m always open to sharing my struggles with others because I know I’m not alone and that I’m not crazy. Again, email me anytime. Who knows you may live close since your in Florida.

    Much love to you girl and prayers your way,
    Stephanie

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