My Endo Journey begins: Surgery scheduled for August 12th 2013

Update: I had my first surgery consult on June 6th at 3pm with Dr. Sinervo at The Center For Endometriosis Care. Many patients call it The CEC. 

I was extremely nervous on the way to my appointment. In between crazy thoughts of possibly losing a ovary during surgery or not being able to afford it at all. I was also in so much pain. My left side of my pelvis felt as if it wanted to jump out and run. Strong cramping and sharp shooting pains. The awesome part is that I had to walk…yes walk 15 mins from the Marta station to get there. Once I reached my appointment I met the awesome women at the front desk. Got my paper work started and took a seat. About 45 minutes later I was being called back to see Dr. Sinervo. My heart began to pound as if it wanted to come out of my chest. But my nervousness was all for nothing. He was so sweet and so concerned about my health. Which was so refreshing next to the usual docs that just questions your pain tolerance.

We went over my pains, symptoms and medications as well as my concerns. He answered all of my questions…well I only had one. But I am sure if I had more he would have easily answered them all. After we were done talking he recommended that we schedule surgery soon. He wants to do a Laparoscopy, Hysteroscopy, Chromotubation and a possible bowel resection. He strongly believes all of my bowel pains are from Endo on or in my bowels. I was completely calm until the words “bowel resection” came up. I just can not imagine waking up from surgery and being told my bowels had to be re-sectioned. I mean what could that mean for my every day life? But quickly I realized that I was in great hands. And that Dr. Sinervo would make sure I had the best bowel surgeon on hand to handle it if need be.

Shortly after that conversation I got my ultrasound. I found out that my left side has scarred ligaments and that could very well be why I have constant left side pains. He thinks I may have lots of Endo on the ligaments to my ovary as well as my uterus. Glad to know that my uterus and my ovaries look nice and healthy otherwise. My uterus is retroverted but he thinks that it may right itself over time so I am not too concerned. I am extremely relieved to now have a  reason as to why I am always in so  much pain in one area. I am hoping he can remove the scar tissue and Endo and it not return.

I was also relieved that my Chromotubation would be done while I would be under GA-general anesthesia. I have heard horror stories of that procedure feeling like your hoohah was on fire. I think I can live without that memory LOL. Also having the Hysteroscopy while under means I wouldn’t need two surgeries. All in all I am so excited to be having surgery and on my way to a possibly normal life without Endo running it. I am so grateful for everyone at The CEC and for the possibility to afford this procedure. They have been incredibly generous to me and I will never forget it.

Anyone ever have any of these procedures done? How are you now that you have recovered? Feel free to comment below if you have any questions as well.

xoxoxox

Sincerely,

This Endo Girl! ❤

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May 16, 2013: CT scan, Pelvic & Trans-vaginal Ultrasounds

On the morning of my Ultra sounds and CT scan I remember feeling like complete crap. Headache back pain and cramping galore. Nothing like a Endo episode I was used to but still no fun. I wasn’t sure if it was because of my birth control or that my Endo was still active. I got dressed in the first comfortable think I would get my bloated body into and left for the hospital.

First up was my CT scan. When I got to the cancer unit my mom had already began to freak out a bit. She looked at me and asked “is there anything you need to tell me”. She was referring to why the need for me to have a CT on the cancer unit floor. I assured her it was only because my doctor thought that colon cancer could be the culprit for all my bowel issues. This of course was the reasoning of my Primary care doctor and not my OBGYN. Even though he seemed to know more about Endo than my actual OB did.

About 20 mins after checking in the radiologist came to get me. He sat me in the waiting area for the CT scan. Handed me a huge pitcher of neon yellow liquid and told me to drink it. I remember it tasted like Gatorade and vomit. Completely disgusting but the solution was necessary for the CT. It had to coat all the way down to my colon and rectum. At that point I was nauseous and starving since I couldn’t eat.

A few mins passed and I got it all down. IV in arm and I was ready for my CT scan. It took the tech about 15 mins to do the entire scan. But I remember the contrast going into my arm through the IV and burning like no other. She was nice and massaged it all in to help. Then I was done and off to my Ultra sounds downstairs for my OBGYN.

When I got to the ultrasound waiting room it was already packed. My first appointment was for 11:00 am but I didn’t get called back until 11:30 for my thyroid ultrasound. My primary care doc requested that one as well for my thyroid nodule. It was super quick..not even 10 mins. Back in the waiting room I went. For the next ultrasound I had to drink 6 cups of water to displace my bladder so my uterus could easily be seen. Well that’s when my day got sucky.

By then I was starving, freezing because the water was ice cold and the AC was blasting. Also my bladder felt as if it was going to explode on top of them calling me back 1 hour after holding my bladder. The entire time I was having to let out small amounts of urine and then drink small amounts of water again in case they called me back. It was torture. I have never wanted to urinate so bad in my entire life. It felt as if razor blades were popping out of my bladder. Or trying at least. Finally they call my name. She told me I could release a small amount before my pelvic ultrasound but not too  much or I would have to drink more. No ma’am I was ready to get this over with so I held it all.

She lays me on the table and started the ultrasound. Mind you I had a FULL bladder and she was pressing extremely hard. She was just moving that dang instrument from side to side like she was playing table hockey or something. I was trying my best not to pee LOL. A few minutes later I was so excited to hear “you can go pee now”. It was like angels voices to my ears. It literally took me 7 mins to get all of the water out of my bladder. She made me sit on the toilet for 8 mins even though I was already done at 7. Something about all the fluid needing to be out for the trans vaginal part to be accurate.

Back on the table I was. She inserted the wand and began the trans vaginal ultrasound. No real discomfort this time except the cold jelly. Shortly after starting she found my right ovary. She said it was the prettiest ovary she had ever seen and it was there for everyone to see. Then she found the left ovary…equally pretty but not as friendly- it was hiding laying or glued on/to my uterus. Then she informed me that I had a retroverted uterus. That means it sits towards my back. She could not see the cervix from the trans vaginal view or my fundus(top of uterus). She also could not see my cul-de-sac.  She told me that all these things were normal but just not as common as women with anterverted or mid-line uterus positions.

She also mentioned that during the topical pelvic exam my cervix and cul-de-sac were visible. She same some free fluid from in th cul-de-sac as well. She told me my OB would go over that with me once the results were back. Finally I was done and on my way home. I was excited to know more about my anatomy and to learn that I had normal anatomy that she called “beautiful”. But saddened that my anatomy was so beautiful but caused me so much pain. Isn’t that such a oxymoron. That’s life with Endo!

xoxoxox

Sincerely,

This Endo Girl

April 29, 2013: Resident OBGYN Appointment & Depo Provera Shot

On April 29th I finally got to see the resident OBGYN I was referred to on the 15th. I meet with my new OBGYN and we discussed my pains, medications and any questions I had. She asked if I wanted to give Lupron a shot and I immediately refused. She seemed happy since we would have to wait until my diagnostic laparoscopy confirmed I indeed had Endo to be approved. I didn’t want to do the laparoscopy either since her boss would perform it. She informed me that her boss would use ablation(burning) and not excision(cutting) to remove the Endo. I was really concerned with the possibility of that surgery only lasting a few weeks before the Endo returned. I was also skeptical when she told me that they would not remove bowel or bladder Endo. I am fairly sure I have both locations with Endo near on or them so someone that could remove that would be best.

Instead of surgery she strongly recommended Depo Prover-the shot. She told me of only a hand full of her patients that had bad reactions to it. So of course I was willing to try it if it meant 3 months or more with no pain. Also not having to remember to take a pill everyday was great too. Especially since I already take so many pills a day. Plus its one of the only Estrogen free birth control options. And anyone with Endo knows that Endo plus Estrogen equals BAD news!

After my pelvic exam and our chat she scheduled me for a trans vaginal ultra sound as well as an pelvic ultra sound. Only issue was that she scheduled it for May 12th. At that point I was in constant pain and I wanted to know why right away. I was a bit annoyed that I had to wait so long but it was better than no ultra sounds at all. I quickly got past it and moved on. Then I ended up needing a CT scan of my belly for my Primary care provider so I moved my ultra sounds over to the 16th with the CT so I had to wait a bit longer.

Right before I left my appointment I got my first shot of Depo Provera from the nurse. My options were either in the butt or in the arm. Hesitantly I took the arm. Since I had to take the train and bus back home I didn’t want a sore bum too. The nurse gave me my injection and informed me that it takes affect and prevents pregnancy within 24 hours. I thought to myself….great except my partner doesn’t have sperm LOL. Right away my arm felt sore and the rest of the day it felt as if I had been bench pressing body builders :(.

I seriously loved that shot for the 1st 18 days until disaster set in. : (

April 15, 2013: New OBGYN visit & Disappointment

On April 15, 2013 I finally got into my local clinic to see a Nurse Practitioner. I was told that she didn’t know a lot about Endometriosis and that I would be a learning experience for her. At that point I was desperate for some answers and I really could care less. I didn’t really think about her being a NP and not a MD. I figured some doctors I had seen didn’t know as much as some NPs I had seen. No real thought process went into her being un-experienced I just need to see someone.

My appointment was at 3pm on a Monday. I remember stopping to get some tacos before hand with my partner. I sat at the table under a umbrella near a beautiful fountain…not being able to eat or enjoy the view. I just could not stop thinking that I wasn’t going to get what I wanted so bad…answers! All I could think of was leaving the appointment in a near 25 mins with nothing but maybe its in your head? Maybe you should try birth control? Have you thought about diet and nutrition to help? That’s all that ran through my mind.

When it came time to walk over to my appointment I dreaded it. I held my partner’s hand and she assured me it would be okay. Soon after I calmed down. There I sat in the waiting room for my appointment. Sitting there I noticed the television was on CNN. There it was…The Boston Marathon Bombing. At that point I remembered how lucky I truly was. Here I am worrying about a doctor not giving me answers and these innocent people have just been attacked for no reason. Sitting there alive, well except for some pain and a long wait time. But I am well.

My amazing partner Christina then reminded me that bad things happen all the time and my need for a healthy life isn’t silly. I deserve to live a pain free life where I can walk and spend time doing what I love. I for a split second I forgot that I had been waiting for that moment to see a doctor for nearly 9 years. Instead of feeling guilt I felt blessed to be alive and be able to help myself.

A few moments later the nurse called to me ” Ms. Magitt, you can come back”. I sat my purse with my partner and nearly skipped to her. She took my weight, temperature and my symptoms done. Back in the waiting room I waited until my Nurse Practitioner called for me. Shortly after my NP called for me to come back and I got immediately nervous. In the appointment I went over my strong family history with colon cancer, thyroid nodules and Endo-Like symptoms(before there was a name to diagnose it. She handed me a gown and asked me to undress. Before I knew it I was butt to edge with my cold feet in metal stirrups. She was examining me and I was in awful pain. I was willing to take that pain if it meant knowing for sure what was wrong with me. Soon after my pelvic, PAP and breast exam were done. I was back in my clothes and waiting on her to return.

She returns with this to say- “I think you should get on birth control”. I remember being so annoyed that that’s all she had to say. I replied “Other than BC what are my options? Is surgery possible to confirm I have Endo? Are there other medications”? I got absolutely nothing. She ended up giving me a referral to see a resident to inquire about surgery or a laparoscopy. BUT the kicker here is that I would have to wait another 13 days. Doesn’t sound like much but for someone that has already waited nearly 9 years that’s a long time.

I left that appointment feeling so lost, so down and so angry. Tears rolling down my face from the frustration. The fact that doctors, nurses and nurse practitioners spend years learning about diseases like diabetes but they barely touch the surface of Endometrosis. Why isn’t Endo more widely talked about among health care professional? Especially since nearly 6.3 million women and the girls in the US suffer from it.  But I know I would love to find more people that are knowledgeable in the matter. More than just giving drugs to cover up and mask the disease.

This Endo Girl can hope right?!!!

xoxoxoxox

How Endo & I met: Part II

At 17 years old my mother told me I would no longer be eligible for Medicaid and that I would lose my OBGYN. I didn’t know if I should be more upset that my awesome doctor would no longer be mine. Or if I was more upset that the pain would soon return. I remember realizing that my last pack of birth control was near its sugar pills and that my cycle was near. I remembered my OBGYN telling me that after the BC was no longer in my system my symptoms and pain would return.

First cycle without BC came and went and no pain. Second cycle comes and still no pain. Then wham 3rd cycle comes and Its awful! The great thing about that third cycle was that I worked a double shift from 5pm-10pm and from 10pm-7am. I was stuck at work in the worst pain I had felt in nearly 5 years. Thankfully I came prepared with Vicodin and tampons. However I wasn’t mentally prepared for the amount of pain and fatigue I would be experiencing. Sharp shooting pains like knives in my vagina and rectum.  On top of my job being a fast food chain where it felt like H-E-L-L! There I am waking up in the hospital because I passed out.

At the hospital my ER doctor informs me that there is basically nothing they can do for me without insurance. They gave me IV fluids, pain meds and something for the nausea. The next morning I spent about 3 hours contacting clinic after clinic. NOTHING I could afford without insurance. I spoke a OBGYN at a local Planned Parenthood and she recommended BC but she told me that it would only postpone the damage of Endo. I decided instead of masking the effects I wanted to treat them. Well that didnt happen for a while.

I went through each monthly cycle for a year. Using pain killers, heating pads, hot baths and yoga. It worked for the most part except I could fee the Endo getting worse because each cycle my pain continued to increase. At 18 years old I joined the Marine corps. Yep I know I know….at 105 pounds and 5’3″ I..ME..SHE joined the Marines? Basic training came and I got the best cycles ever with  no medicine. I don’t know if it was the stress, exercise or diet of no sugar and high fiber that did it but I was extremely thankful!

3 moths later I am back home because of a lovely thyroid nodule(we will discuss this later) my OBGYN found during a exam. Turns out thyroid nodules aren’t allowed in the Marines. Once I am home I notice my cycles took a bit longer to return to the once excruciating episodes. But when they did the came back to kick my butt. I started experiencing a pulling and ripping sensation in my lower left side. It felt as if a little devil  was running around in my lady bits causing havoc to its liking. I couldn’t take it and back to the ER I went. Same ole same ole…still nothing other than pain killers and IV fluids.

This continued right up until now that I am 24 years old. I now have insurance through my county hospital Grady because I am unemployed for nearly 2 years. If anyone is familiar with Grady you will know it’s hell to get an appointment. If its a specialty like a OBGYN or Endocrinology you have to get a referral from your Primary Care doctor. So in December of 2012 I called for an appointment to see my primary care doc…..March 23, 2013 is the date I got. Who has to wait 3 months to see a primary care doc? Then I would have to wait another 2-3 weeks for my OBGYN appointment IF they give me the referral. What???

That just wasn’t going to work for me so everyday I called the OBGYN asking for any chance to see a doctor without a referral. FINALLY a few days later a nurse tells me the Nurse Practitioner is new and could use experience with a Endo patient. Okay great.

So, yep I got in to see someone at the OBGYN clinic without having to wait 4 more months. That’s where my journey starts. I am excited to start posting about the actual answers I received after that first appointment.

Ladies PLEASE make sure you never take a no without pushing forward. Take control of your own medical journey. ❤

xoxoxo

Sincerely,

This Endo Girl

How Endo & I met: Part I

Hello World! My name is LaLa and I am 24 years old. I live in Atlanta, GA where I was born and raised. I grew up with a big sister and a big brother. Yep that means I am the baby! I had a rather normal life grown up playing outside with siblings and friends. We played silly games like bust stop and hide and seek.

In general my childhood was the best. Up until I turned 11 years old. That’s where my life got truly difficult. I find it hard to say, well type that. I mean what real problem could an 11 year old child complain about LOL. Well at 11 I got what Mother Nature must have thought to be a cruel joke. I got my menstrual cycle. Yes I know it’s a girl’s destiny to “become a woman” however I am sure extreme pain and depression wasn’t meant to go along with it.

My first cycle came in the middle of the night when my parents were sleeping. I remember awaking to such terrible pain that I thought I was dying. I literally rolled out of bed onto the floor in a ball. I couldn’t stand and I didn’t know how I would reach the bathroom. My parent’s room was just down the hall but for me that seemed so far. After falling a few steps I managed to make it to my mom’s side of the bed. I grossly showed her my undies and cried out “mama something is wrong”. She quickly sat up and turned on the bedside lamp and replied “Chile, that’s just your period. It happens to all women”. I remember being so confused yet calm. I took an aspirin and got back into bed.

The next morning I awoke once again in terrible pain. This time with the lovely nausea, vomiting, diarrhea and fatigue. I begged my mom and dad to take me to the ER. Instead my dad insisted I just had normal period cramps. I remember thinking to myself “he’s not a woman, how does he know what cramps are like”. Yet still I sat there in pain. Monday morning came around and I missed school. My mom went and purchased me a heating pad, Tylenol and Gatorade. I felt a lot better laying with the heating pad but I knew it still wouldn’t solve it.

A few more months like that came and went. Each month I seemed to be in more and more pain. This time bleeding more and more and getting severely dehydrated. Finally my mom decided something wasn’t right and took me to the ER. I sat in the waiting room for about 2 hours before being called back to triage…blood pressure, weight and pain level. Then off to wait it the waiting room for another 45 minutes. I remember my mother getting really upset that they were calling people back before me that had colds and headaches. But there I was pale, dehydrated and short of breath just waiting.

Finally a nurse called out to me “Ms. Magitt, we are ready for you. Come on back”. My mother picked me up and took me back. When I got back my nurse gave me fluids and Phenergan as well as Morphine for the pain. I waited about 30 minutes for my Dr. to come in. In walks a man that looked like he could care less about my pain. He looks at me one good time and says “let’s get her a pelvic”. My mother wasn’t happy that they wanted to do a pelvic exam on an 11 year old that was already in pain. The nurse explained it was the best way to make sure I was ok. Pelvic pain concludes that nothing was wrong.

A week passed after being in the ER and my mom got me a OBGYN. I meet her for the first time and told her my symptoms. Her first words “I think you have Endometriosis, baby”! She told us she didn’t want to do surgery-Laparoscopy since I was so young. Instead she prescribed me Vicodin, Phenergan and Seasonal birth control. Instead of 12 excruciating cycles a year I now had 4 relatively pain free cycles. I really loved my life at that point. I could go to my friends’ parties or to the movies. I didn’t have to miss out on everyday activities…I felt normal. Right up until 17 years old when I lost my medical insurance. That’s where my life went right back to the day Mother Nature played that awful trick on me for the first time. More pain, nausea, diarrhea, constipation and more.

The next blog post will pick up right a 17 years old where my Endo came back with a terrible vengeance. To bite me in the ovaries!

I appreciate you all taking the time to read this HUGE post! ❤

-LaLa