Hello everyone :) I'm Endo Girl (short for Endometriosis). This blog is dedicated to all the girls and women affected by the disease Endometriosis, and for those that do not know anything about it. Throughout the process I hope to help support those who have it and to change some people's perspectives on this misunderstood disease.
Side note: I do suffer from this disease and if you have any questions or concerns, please feel free to contact me & show your support :)
I know I haven’t posted my experience in a while because I’ve been so busy trying to catch up with school work and starting to transition into my life again. I will try to finish up my story today, if not, soon!
If you want to see the first and second of my experience with Endo, please click on the following links: CLICK HERE TO READ PART 1; CLICK HERE TO READ PART 2 If you’ve already read part both of them, keep reading :)
Last time I ended off with me going to a more diverse hospital with doctors that specialized in Gastroenterology. With my first appointment I remember staying at a hotel the night before in order for us to be closer to CDH and that way the drive wouldn’t be as long since my appointment was about at 9 or so. Anyway, the doctor could tell I was in pain and scheduled a sigmoidoscopy since my pain was in my lower abdomen. We waited for about 2 hours to prep for this and I ended up having to drink this gross flavored sedation medicine which was supposed to work within 20 minutes. But in reality, it didn’t; I felt most of the sigmoidoscopy which was painful because they ended up taking biopsies. Halfway through I was finally out and when I had to go home people had to physically pick me up and dress me because I was so out of it.
After waiting for a few weeks for the results they scheduled a full colonoscopy due to the inflammation they found in the lower part of the intestine and bowel. By this point doctors kept telling me to wait another two weeks or another month and I was sick and tired of hearing this and waiting. I just wanted to feel better. A long time anticipating the colonoscopy, I finally went in to have it really early one morning. All the doctors were very nice and supportive seeing how much pain I was in. I was put on anesthesia and don’t remember much only being cranky when I woke up. (haha) But after a few days they said the inflammation had cleared up and I didn’t have any major disease that they could find. As much as that was a relief, I would’ve rather been diagnosed with something they could treat. It was definitely so extremely frustrating. They seriously thought it was all in my head and had “anorexia” down in my charts at the time which I know wasn’t what I had. Eventually they said to go to a pain clinic seeing as there was nothing left to do. I had had over 20 cat/CT scans, numerous ultra sounds, urinary/bowel tests, and so many more I don’t even remember telling me that my appendix and everything else inside me was “normal”. But deep down I knew that a pain clinic wouldn’t work, the pain I felt wasn’t something that hypnosis would help.
The doctors did give me a few hints to go see another surgeon to see if they would “open me up” and take a look at my insides to see if they could find anything. We did call my original surgeon that took out my gallbladder but she told me to talk to a gynecologist before she would even schedule an appointment to talk to me. We didn’t want to wait even longer because by this point I was turning the corner of my 5th month of this whole pain process.
Side note: I had surgery 2 years prior to remove a pilonidal cyst on my tailbone which is a whole story within itself.
We ended up calling the surgeon that removed my pilonidal cyst and seeing if she would talk to us and help me get rid of my pain. We called her office and she scheduled an appointment to see us within 4 days which was the quickest that had ever happened. Of course the appointment was on the worst snow storm of the year where the roads were terrible and icy but I wasn’t about to miss this appointment. She was so understanding and very hands on, she was the first doctor to talk to me directly and ask me how I felt and what I thought was needed to be done. After putting in my input we decided to schedule a surgery in two days to take out my appendix (whether it needed to be taken out or not just as a cautionary act), and to do a diagnostic exploratory surgery (fancy phrase for look around to see if anything looks suspicious. She then advised me to see a gynecologist as soon as possible and for him to be in the surgery to check things out too.
I went to the gynecologist the day before surgery and right when I got there he knew something was wrong just by looking at my health records and history. (I had ALWAYS had bad periods and thought it was totally normal (if you do suffer from bad periods please see your doctor it will help a lot, trust me), I would literally miss two-three days out of every month because of how painful and uncomfortable my period was). Anyway, he pretty much knew I had this disease called Endometriosis without even checking me. When he was feeling around I screeched in pain because of how painful it was and right then I knew something was up. He gave me a bunch of pamphlets and books about Endo and told me to “read up” before surgery. That night I stayed up late to read them and educate myself on this disease I could potentially have.
The day of the surgery was February 23, 2011 and I was a nervous wreck. I went in and got registered and remember there was two flutists and a harpist playing live in the hospital to lighten the mood. When I was called in and got dressed in the hospital gown the tension began to rise. The surgeon was about and hour and a half late because her surgery prior to mine was running longer than expected. I remember when they finally told me it was time to go I was pacing the ceiling panes as I was being rolled down into a cold hallway where nurses were dodging out of the way. When I got the to operation room they put a blood pressure cuff on me and my arm with the IV on it got velcroed to a board and my legs were tied to the bed in order for me not to move during surgery.
When I woke up I was in a lot of pain, screaming to get some help because I couldn’t move. It was unbearable the amount that I hurt. They gave me pain meds but took them about 2 hours to keep my pain under control. I was to be kept overnight to monitor my well being and ended up staying an extra day on account of I couldn’t walk at all. In surgery however, they did find Stage 1 Endometriosis and found out that my appendix was in fact infected.
Thank you so much for reading! :) This was the end of my story, I might tell what I’m going through now as a part of my recovery stage. I hope you enjoyed it and I hope my experience can help you with any problems you might have.
REMEMBER YOU ARE NOT ALONE, ANY QUESTIONS YOU MAY HAVE YOU ARE FREE TO ASK ME! I WILL DO THE BEST OF MY ABILITY TO ANSWER THEM. STAY BEAUTIFUL <3
I am going to continue my experience now, if you want to see the first part of my experience with Endo, please click on the following link: CLICK HERE TO READ PART 1 If you’ve already read part 1, keep reading :)
Okay, so the last part I ended off was when I kept going in and out of the hospital because quite frankly, they had no clue what was going on with me and neither did I which was frustrating as you can imagine. The next hospital visit I kept throwing up again and was having the unbearable pain in my upper abdomen as well as my lower abdomen, it was radiating a little on my right side too. All I remember was being in pain that was controlling my life and everything I did. As you could guess, I had been out of school and in a week was Thanksgiving and I knew I had to get better by then to see my family that came down every year. So after tons of pain meds and multiple different anti-nausea meds I had enough for them to transport me out of the hospital and within a few days I thought the whole thing I was going through was over. Again, I was wrong.
So it was Thanksgiving! My family came down and we had a great feast with amazing food, as always. I could only have so much food because my stomach couldn’t tolerate a lot so I ended up watching everyone else chow down while I ate the few things I could. But I didn’t care because I was with my family and that’s all that mattered. So the few days my family was down with us we did a lot of activities and I was going along fine, but was slowly starting to get the pain back in the same area. Figuring I was going back to school, I started doing a bunch of homework but I didn’t have enough energy. The pain was too strong. And yet again, I couldn’t go to school leaving me to have more doctors appointments and more hospital visits.
The hospitals I was going to had no clue what to do anymore. I had probably had about 20 catscans and MRI’s by this time. I was put through so many other machines that I can’t even remember and had probably 30 viles of blood taken from me and they still had no answer. What really made me mad was that they kept telling me I was “normal” and kept asking if I was sure I didn’t have an eating disorder. I was fed up when they wouldn’t take “no” for an answer. So finally my GP had finally given me the okay to go to a new set of eyes and gave me a referral to Chicago hospitals (if you haven’t guessed I live in Illinois). We thought a referral wouldn’t take that long, and we were wrong. Almost a month later and finally all the paperwork was sent off and we could finally schedule an appointment with a doctor who specialized in Gastroenterology (stomach and intestinal problems). So off I went onto a new hospital and had my first appointment.
I’m going to stop here today, and pick up again with part 3 sometime in the next few days. Thank you so much for reading! :)
Remember you’re not alone. My ask box is always open and you can also reach me at my email: email@example.com for further questions, concerns, advice, etc.
Today I’m going to start writing about my experience with the disease Endometriosis. I think I’m only going to write about the first part of my journey (before I knew I had endo and also the other things I went through/had) which started 6-7 months ago in September 2011.
September 5th I believe is when I first started realizing I was feeling crummy, it was also the weekend of my grandparents anniversary party which was convient…kinda. I wasn’t really worried about anything since I had just started school literally a week and a half prior. Sometime during the afternoon/night I started getting a suspicious rash all over my face and we assumed I had some kind of reaction against the food, which could still be entirely true, but that was the event that started it all. Throughout the next few days I started throwing up everything I ate, including the much needed water. I went to my GP (general practitioner) and he told me just to try and “drink it away” and have a follow up in 4 days (this was a thursday). So as he told me I tried every kind of drink you could think of and like it had been going, nothing stayed down so we went in again to check with him to see what the next step was. He walked in the room and immediately could tell I was really dehydrated (eyes sunken in, non responding skin, etc) so he called a few people and I was admitted into the hospital to get fluids in my asap. They then started doing multiple blood work, urine/stool samples, and tried to get as much fluids into me as possible. (I was actually in “lock down” which meant people had to put plastic dresses on along with masks because they had no clue what I had). At one point all the doctors started asking me and my mom if I wanted to talk to the hospital social worker because they thought I had an eating disorder, which wasn’t true. And I support the eating disorder awareness groups (i’m here if you need to talk) but it frustrated me that they thought it was all in my head. Anyways 10 long days I sat in the same room, having tons of tests done to me until they finally did one last test showing that my gallbladder wasn’t working properly (working only 17%, at my age is very rare). The bile was leaking into my stomach irritating it causing everything I ate to be rejected. So the next morning I was scheduled to have my gallbladder removed, and then within two days I was released from the hospital, praying it was the end of it….wrong. (Let me remind you this was only the first month of my journey).
For a while, I started healing and thought I was on the right track but I wasn’t healing as quickly as everyone else in the past has before. Now I know everyone’s different but the healing process should’ve taken about a week-week 1/2, mine dragged on to 3-4 weeks at least. But despite that I went back to school, started catching up and was actually progressing in my healing. But just as I finally caught up with my schoolwork (in the beginning of November), something hit me again causing me to feel worn down, weak, and very sick. I was literally walking around like a grandma or slower for that matter. We thought I had just caught the flu or some kind of sickness from being at school since my immune system has always been weak. But again, that wasn’t the case and I didn’t get better. So I ended up going to the emergency room multiple times and ended up getting admitted again.
I’m going to stop here today, and pick up again sometime in the next few days. Thank you so much for reading! :) Remember you’re not alone. My ask box is always open and you can also reach me at my email: firstname.lastname@example.org for further questions, concerns, advice, etc.