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My Battle with Endometriosis

“Hope Runs Deep for a World Without Endometriosis”

Besides Cora’s birth story, this is probably the most emotional blog post I’ll write, and to be honest I am not sure where to begin. I guess I will literally start at the beginning, in order to understand my battle you have to know everything. Even the years leading up to my diagnosis that doesn’t seem like it has anything to do with it, it does. All the doctor’s visits trying to write me off & hand me prescriptions for something I didn’t need. I had never heard about Endometriosis until I was 14. My older sister had had surgery to remove either lesions or cysts off of her fallopian tubes. Now that I think about it I remember having to take trips to the ER when I was younger, for my sister because her periods were so bad prior to her finding out about Endometriosis. I remember getting the information from my mom about my sister suffering from this disease, and they had not had a lot of further information about it, only that she may not be able to have children.

I remember thinking at 14, well if she can’t have kids if she ever wanted me to, I would carry for her, not knowing I would be suffering the same fate eventually.

From the time I started my period I remember it being so bad that I would miss school for days on end every month for the heaviness of my cycle, and the amount of pain I would be in, that I just assumed were the normal cramps. Among other reasons, when I was 15 I went on birth control because of the way I would bleed and the pain I would be in. I went on the pill and was on it up until the time I was 21. During the time I was on birth control I would be going back and forth to my General Practitioner for side effects I didn’t realize until after, the birth control was giving me. I can’t really explain the symptoms, but I just didn’t feel “right.” I was always feeling a little off. I would suffer from these panic attacks that would be brought on by literally NOTHING. I was having chest pains, thought I was having a heart attack, I was anxious all of the time and my attitude was on a new level. My sleeping was getting screwed up, my eating habits changed for the worse, I was losing weight. I went from 130lbs to 98 quickly. My doctors just told me I was depressed and gave me anti-depressants.

It was very hard to deal with the fact I was “depressed” because I would hear constantly, “what do you have to be depressed about?’ ‘Oh, you have such a hard life’” It literally made me feel worse than I already did. I didn’t know why I was depressed; I didn’t want to be depressed at 18. Seeing everyone going out and being social and putting themselves out there and all I wanted to do was lay in my bed and isolate myself from everyone, so that’s what I did.

During that time, in 2008, I had an unfortunate emergency surgery because my appendix was leaking toxins into my system. I remember the pain being so onset and excruciating that it woke me up from my sleep. I literally thought it was cramps since I was going to get my period later on that week. My appendix was so inflamed that it was in the middle of my abdomen and needed to come out right away. At the time, there was no evidence of the endometriosis at all. I didn’t know until years after that because I was on birth control for so long, it actually kept the endometriosis from progressing which is why during that surgery there were no signs of it, only the inflamed appendix.

After that surgery, I stopped taking the anti-depressants because I was getting side effects from them also. After stopping those, I actually felt better. I felt like myself again. I want to say it was maybe 7 months until I was back at the doctors for the same anxiety attacks, same sleeplessness, and same symptoms all over again. They tried giving me a different anti-depressant, I lasted 3 days. I refused to believe it was depression, I knew something else was wrong I just didn’t know what.

It wasn’t until I really started to do my research about the birth control pills I was on that I realized; maybe I am having a hormone imbalance because of the extra hormones the birth control had been pumping into me the past 7 years. So, I decided to take matters into my own hands and I stopped the birth control. My boyfriend at the time (husband now) wasn’t happy about me going off the birth control because we didn’t want to be expecting a baby any time soon, but he had seen firsthand the struggles I was going through because of the doctors giving me the run around, but agreed it was what was best for me.

When I got off the birth control, the first year & half I really don’t have any complaints about. My periods were definitely heavier than when I was on the birth control, but not as bad as they had been prior. My mood seemed to have been better and I felt so much happier. Slowly, I felt like I was getting my life back together. I was going to cosmetology school, I was so motivated, I felt like I could take on the world and I couldn’t remember the last time I had felt like that. Then history started to repeat itself on me…

I remember one day being at work and feeling that same excruciating pain I felt when my appendix was leaking. I had to leave work and was rushed to the ER. They did scans and all types of tests to find nothing; they just gave me some pain killers through my IV and sent me on my way, and told me to follow up with my GYN. I followed up with my GYN and he told me most likely it was a ruptured cyst because those were all of the symptoms. I explained to him my sisters’ history of endometriosis and all of the symptoms and he told me, since I have a sister that has it, there was a possibility but the only way to tell was surgery, which I wasn’t going to have for no reason.

I started getting chronic lower back pain that I never experienced before along with my periods becoming HEAVY. I was popping more than the recommended amount of any and every type of NSAIDS along with Midol’s for the pain which did absolutely nothing, not even take the edge off. The back pain started to linger even when I wasn’t on my period, started noticing it during ovulation and a week before my period. Which brings me to another point – I wasn’t on birth control & yet, I wasn’t getting pregnant.

I wasn’t trying to get pregnant, but honestly my boyfriend and I were NOT taking the precautions we should have been in order to stop me from getting pregnant. I would have sex before I ovulated, during ovulation & nothing; never even had a pregnancy scare. My periods would come on time I could almost calculate it. If I was due for my period I would be getting it the morning of right when I woke up. I know I had been on birth control for 7 years, but I was also off of it for almost 2 years and it was like I never had to worry about the possibly thought of me getting pregnant. At the time, of course who wouldn’t be thankful for something like that, but there was always that thought in the back of my head that something was definitely wrong. Around the same time, the pain with sex had started. Sometimes during sex I had to stop because of the excruciating pain I felt all of a sudden; my boyfriend had no idea what was going on and would panic that he did something which made me feel even worse. Most times it wouldn’t happen until after, that I would be in fetal position crying in pain in my pelvic region. Along with the ridiculous amount of bleeding and pain I started to get during and before my periods, I started getting a rectal pain that I could only describe as a feeling of a Charlie Horse in my rectum. I would wake up screaming in agony, I would pop pain killers and it wouldn’t help it. I just had to wait for the pain to pass. I started calling out of work because the pain wouldn’t subside in a reasonable amount of time that I would never make it there.

I started to see a new GYN because my old GYN was impossible to get in touch with to make an appointment. During my very first visit with this doctor, I explained to him all of my symptoms and my history and my sisters history and he flat out told me, you don’t have endometriosis, don’t worry about it. Safe to say: I NEVER WENT BACK TO HIM after he dismissed me like that.

In 2013 was when my life changed. I went to a new GYN who to this day I am so thankful I found,  that it makes me emotional. He did an ultrasound on me and found a HUGE cyst the size of a grapefruit sitting on one of my ovaries. He wanted to see me back in 3 weeks to see if it was still there because they usually would go away on their own. 3 weeks later another Ultrasound was done to find the cyst had not gotten any smaller and found even more cysts on my other ovary. I explained to him how the other GYN brushed my symptoms off, brushed the fact that my sister suffered from Endo and instead of giving me a prescription to shrink the cyst (since I was very sensitive to the side effects of) told me were going to get the answers I needed and he scheduled me for surgery to remove the cyst and find out once and for all if I had Endometriosis.

April 2, 2013 I was diagnosed with Stage 2 Endometriosis. He said he was able to remove the cyst from my ovary without doing any damage to it, which we weren’t sure was possible. He also told me he burned any lesions he saw, but the Endo had completely plastered my right ovary to my back wall which is why I was suffering from the back pain. He wanted to treat me with birth control pills after the surgery, which I wound up being so back and forth about because I knew now I had Endo, I knew the infertility risks and I didn’t want anything to prevent me from getting pregnant and birth control was not so kind to me in the past. So I didn’t go on it. I don’t know if that was part of my downfall to come but I refuse to dwell on it because it was the decision my fiancé and I had agreed on.

For the next year, I could feel with every period it getting worse. The pain was now ALL of the time, it was in my lower back, in my abdomen and pelvis, in my hips radiating down to my knees, the pain with sex was unbearable where I couldn’t even bother trying anymore. I had never been so depressed in my life. I had isolated myself so much that I refused to answer texts, I refused to go out. I was in pain 99% of the time so what was the point. I quit my job because the 45min to 1hr commute was too much stress on my body. All I wanted to do was lye in bed and stare into space. I had hit rock bottom. The pain had gotten so bad I hate to admit this, but I didn’t want to live anymore. I had pushed everyone away from me and felt so alone because no one understood. I felt so bad about myself. I hated myself; I would cry to my fiancé and ask him continuously why he loved me. I was damaged goods. I would never be able to give him a family. The fight I was fighting didn’t seem worth it in the end. Was I just going to lay there and let myself waste away? I wanted to. I had gone to cosmetology school and I had nothing to show for it because the pain I was in had stopped me from pursuing what I wanted. I felt worthless, why would it matter if I was here or not. I didn’t even want to have my wedding. Once I started planning my wedding, it gave me some initiative to push through slowly.

During that time a family friend who had suffered from Stage 4 Endometriosis reached out to me and gave me her Pelvic Pain surgeons’ number and told me to go see him. I went there and he had me fill out literally a packet of papers with all of my history, including a questionnaire asking if I had any of these symptoms and if any of these daily activities brought me happiness on a scale of 1-10. When he brought me into his office I wasn’t sure what to expect, and he explained to me that he worked with a bunch of different specialist including Gastroenterology, Radiologists, and Psychiatrists etc. He said due to my responses on the paper I was depressed. Obviously I hadn’t moved or had an initiative to do anything. He made me feel very comfortable in telling me that it’s expected that I am “depressed” because how could someone be in an immense amount of pain the way Endometriosis patients experience and not feel depressed and defeated. He gave me a prescription for an anti-depressant that I again would not take; if he was going to remove the Endo in his special way wouldn’t I feel better and not depressed, so why would I take the meds? He did an ultrasound just to see if there was anything else going on, which there wasn’t. He set me up to have an MRI done of my pelvis with contrast at NYU Hospital where there was a radiologist who specialized in Endometriosis that would be able to see some type of formation of it on the MRI. (Don’t know if that is true or they just wanted the money from the MRI, but in any case – they did see things) I was set up for surgery after.

Within a year my Endometriosis had gone from Stage II to Stage IV. He removed the Endometriosis lesions by “Radical Resection of Endometriosis” which means he removed the lesions from the root so it would take them longer to return. He also would have removed my appendix if it hadn’t already been removed because the appendix is usually the first place the Endometriosis will attach itself to on your GI system. He cut some nerves that would help minimize the pain sensation when using the bathroom and cramping in general. He also used dye to shoot up into my fallopian tubes to check for any type of blockage which there was none.

At my follow up appointment we decided to put me on birth control but decided to go the Mirena route, which I cannot lie I was very skeptical about for good reason with all of the awful side effects it can hold. I wasn’t 100% on getting it but I figured it wasn’t a medication that I would take daily to get side effects of so let’s try it. I also decided to give it a shot because something I had not known before hand but birth control pills actually stop your ovulation from happening every month and there was no way with Stage IV Endo either of us were okay with stopping me from ovulating since I did want to try to have children in the future. The Mirena didn’t stop ovulation. I had the Mirena in for maybe about 2 months and HATED it. I spotted for maybe the first week which they say is normal, okay fine. After spotting I didn’t get a period at all which I wasn’t okay with, how was I still supposed to be ovulating, but didn’t have my monthly cycle? Strike 1. A Side effect I also got was this weird sharp pain right in the middle of my lower stomach near my pelvis and in my vagina just like the Endo, but sharper. Strike 2. The third Strike was when I went for a visit with my regular GYN to update him on everything and he did an ultrasound and the strings from the Mirena were knotted in my cervix so far that the Mirena was almost not in place and would have been floating around my Uterus. This probably would have cause the Mirena to perforate my uterus and causing more damage. It was in the best interest of me and my regular GYN to have it removed ASAP. Which I did, and my pelvic pain specialist wasn’t happy about it. But I didn’t care, I wasn’t happy with it and I couldn’t take the chance of more things happening with the Mirena.

Afterwards, my periods did not come back as bad as they were prior, and the pain was not as unbearable as it had been. Pain medication started to take the edge off and I didn’t have to pop as many as I once had to. There was still a lingering pain there though. It had gotten to the point that I was able to deal with the amount of pain that was left over because I had dealt with the debilitating pain for so long it didn’t seem so bad. Little did I know there were other things going on that I would soon find out about.

Less than a year after the Radical Resection of Endometriosis I was back in excruciating pain with new symptoms. The pain was still radiating down to my hips and in my back but I started getting unbearable heartburn, nausea and again not feeling “right”. I went to a NEW General Practitioner that I worked for and explained to him my past with the Endometriosis and all the new symptoms I was getting. He sent me to have a CT Scan of my abdomen and pelvis. I remember the day after going for the test, drinking a sip of beer at a party and the heartburn sensation radiated into my arms, down my legs, into my head. I knew something was wrong. The CT scan showed GALLSTONES. So many gallstones they couldn’t even count. Whether this was a part of my body the endometriosis had attached itself to and messed up, I don’t know. I will tell you my GP and GI Surgeon both told me that this did not happen overnight. These gallstones could have been present for years and it got to the point where my gallbladder was diseased and needed to be removed, which is why I got all these symptoms. Gallbladder disease also runs in my family as well as Endo.

After I had my Gallbladder removed, I seriously NEVER FELT BETTER. I had some pep back in my step and had so much more energy that I felt like a 12year old again. That was also short lived, because a month after my surgery to remove my gall bladder I found out my husband and I were expecting our first child together……..My Little Cora Noelle.

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One Year Ago...

One year ago today December 30, 2015, I woke up feeling very different. 39 weeks 2 days pregnant, just trying to make it through the last few days. I woke up feeling very melancholy, uncomfortable, but calm. A few dull aches in my lower abdomen here & there but nothing that alarmed me. I got ready, Steve drove me to my moms (since it was getting close to the day I didn't want to be alone, just incase) on his way to work. All morning I had been feeling wet on my underwear. I would go to the bathroom check and see little wet spots. I wasn't thinking anything of it. The first few times I had thought I just losing bladder control a little bit and it would dry. I had to make my way to the post office to get out my thank you cards from my baby shower. While walking home from the post office, I just felt very off. I was having back pain and Cora had dropped already so I was feeling her in my hips and pelvis pretty badly during my walk. What usually would be a 20minute walk there and back took me an hour. I kept telling myself it's not gonna be today, it's nothing, it's just because I'm close to my due date. I had never been pregnant before, what did I know?

I just wanted to go home so I could eat, my mom had stuffed peppers with my name on it that I couldn't wait to get my hands on. The last few blocks of my walk, I kept feeling a little wet again. Nothing crazy, just not dry. I got home and checked my underwear and instantly text my doctor and asked him if my water breaks, is it going to be a full gush of water or can it be drips? He called me right away and told me it doesn't necessarily have to break all at once and I should go to the hospital to get checked out. I called Steve around 12 who was on lunch just about to eat himself and told him that the doctor told me to go to the hospital to get checked out.

As we got to the hospital around 1:15pm, I told them what was going on and they put me in a room to get checked out. They hooked me up to all of these monitors & took my entire background of medical information. After a while, a nurse came back in and told me I was having contractions every 2-10 minutes irregularly and asked me if I felt them, which I didn't. I must point out that my entire pregnancy I was worried about labor and not feeling my contractions, so of course this would be the case. The nurse ran a few tests to see if the fluid I was leaking was in fact amniotic fluid or not. Of course, ALL of the tests came back inconclusive. She checked to see how dialated I was, still only 3.5cm dialated, which was the same as the week prior at my doctors visit.

The nurse called my doctor, and then my doctor called me and told me I most likely had a high leak, and that everytime the baby moved, it would leak just a tiny bit. He told me I had two options, I could stay and be induced, or I could go home, but he reassured me I would be back later on that night because she was slowly on her way. Honestly, the choice was a no brainer. 1- My entire pregnancy I said I do not want to get induced, I want her to come on her own, when she's ready.. 2- I was really hungry since I didn't get to eat those damn stuffed peppers and I knew if I stayed to get induced they wouldn't feed me. So we left. We went to the mall because I was craving the Melt Shop Chicken Sandwich. I honestly couldn't even enjoy it because I kept having so much pressure in my stomach and I didn't feel well. I didn’t say anything, I stayed calm even though a million things were going on in my mind.

We got home around 4:30pm, and I had to go to the bathroom. When I did, I noticed I was bleeding. I called my doctor and told him I was bleeding, he asked if I had any contractions, in which I replied no, but did have a lot of pressure in my ass. He told me to get back to the hospital right now and he would meet me there. We were literally home for about 5minutes. My doctor was on vacation and still came in to deliver her, which I couldn't be more thankful for. We got back to the hospital around 5:30pm and my doctor had arrived shortly after. They put me in a delivery room to change get ready and relax as they asked me a bunch of questions regarding previous surgeries and my medical history (AGAIN!) and so forth.

Needless to say they freaked out and confirmed with my doctor that I wasn't having a C-Sections because I've had so many surgeries already. My doctor checked me and I was still about 3/4cm dilated. By the time that was over, my parents had arrived and they were ready to break my water. At 7:00pm they broke my water, it felt like a little pinch, until the liquid started pouring out. I couldn't help but laugh and the more I laugh the more fluid came out. It was then that I started to feel the contractions. The contractions were almost instantly worse & I felt it all over. I was able to deal with the contractions for about 3hours.

They got to the point where they were coming very frequent & my mom had told me that they were only going to get worse. I then remembered reading that if I'm going to get the epidural do it sooner rather than later because if I "deal" with the contractions until last minute I won't be able to sit still while they gave it to me, so I had told the nurse I wanted the epidural. The doctor checked me and I was at about 6cm dilated when I received the epidural. I got my epidural around 9:50/10:00pm. My contractions were consistently every 3 minutes. After the epidural I instantly felt better.

Throughout all this all I could do was think about Cora. That very soon, I would be meeting my baby. What would she be like? Who would she grow up to be? What was her personality going to be like? What was she going to look like? Would she have her father’s stunning blue eyes? Was she going to have hair? I was so close to meeting her, but still so far and had so much more work cut out for me before I could hold her.

I stayed so calm throughout all of this because of her. I knew this was all for her. I didn’t need her to be stressed while already having to deal with her journey into the world. So I stayed calm.

My doctor told me he would come back and check me at 12:00am, even though he was in and out the entire time talking and laughing with us, and watching videos. I knew it was official, she was going to have a New Years Eve birthday. I was relaxed for about 2hours with Steve and parents in the room, all of us nodding off, and watching TV. When my doctor returned to check me I was only at 7/8cm dilated, not as far along as he thought I would be so he ordered a small dose of Pitocin to speed up the process. The nurse came back and was trying to hook the Pitocin up but for some reason the machine wasn't working. She told me to lay on my side for the time being until she could get the machine to work because sometimes that helps speed the labor along.

BOY WAS SHE RIGHT! As soon as I laid on my left side, I felt ALL of the pressure and I felt it ALL over. My back, my abdomen, my pelvis, my ass, EVERYWHERE! The rectal pain was so intense that the nurse called my doctor in to check me again. He came in around 12:23am and her head was right there and all I saw was him give me a reassuring smile and I knew. They had me turn over, laying on my back. My doctor had stepped out to get his team of nurses, and all the while I told the nurse, that had been with me, that I had to push. It was 12:33am, I began pushing and she called my doctor right back in the room because her head was right there.

I pushed harder than I ever thought I would have to push for 11 minutes. At 12:44am I heard the sweetest cry come from the smallest human. I cried. I couldn't believe she was here. The little peanut that had been kicking me non-stop, who kept me up at night with her movements, the one who pushed on my bladder and made me have to pee every 5minutes was being placed in my arms for me to hold. At that moment, all the surgeries, all the headaches, all the run around and confusion the doctors had put me through was worth it. I had my blessing right there in my arms for me to hold and kiss. She was real, she was mine, and she was perfect. I couldn’t have pictured bringing in my New Year any other way than her in my arms. I finally had my little!