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Raven’s Story!

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Hello! My name is Raven! If you’re reading this you either have Endo or something similar or have a friend/family member who does. If that is the case I’m so sorry! Endo sucks!! But you’re never alone! Join a support group! It will help you in ways you couldn’t imagine!

So here is my story! I’m 23! I’ve been dealing with pain for years! Pain in my legs constantly and worse when I’m on my period. Pain having sex. And pain in my abdomen worse when on my period!

I started dating my best friend of 7 years a couple of years ago! When we first started dating we found out that he was a daddy! It’s a weird situation but he had a fling with a girl and she ended up pregnant! Brooklynn was born 4 months into our relationship. We found out about her the day she was born! It’s a weird situation but a great one! Their daughter’s name is Brooklynn and she has 4 parents who have been through hell and back in 2 years and have managed to be friends/family. We have 50/50 custody! When Brooklynn turned one we decided to try to have a baby ourselves Brooklynn already had another new little brother and she is about to have another one from her mother! She is the best big sister she loves it! We were ready for our own!

We tried for almost a year. In that time and years before I saw numerous doctors explaining my pain. I explained the leg pain to numerous doctors and told them I don’t know how but it’s related to my period they assured me it wasn’t, they would prescribe me naproxen and tramadol and told me I was perfectly fine. One day I woke up with awful pain in my left side that persisted throughout the day. In 1 day I had seen 2 different doctors,  one told me I was fine the other told me I had a cyst rupture on my left ovary. They said its normal it happens your fine go home! That night I was getting dizzy throwing up and in a lot of pain still so my parents took me to the ER! They tested me for an uti?! Even after I told them I had a cyst according to another doctor. The uti was negative they did a transvaginal ultrasound and said they saw blood. I was probably going to start my period soon. They had a follow up appointment I asked to see a certain obgyn a friend of mine used and they set up an appointment with him. The pain continued until I saw him I spilled my heart to this man Dr Richard Naggy! And with no surgery just some weird walks he made me do some pushing and poking on my stomach and what I told him; he said I would bet money you have endometriosis it’s not a sure thing and we would have to do a procedure to find out.

He gave me some info I told him schedule an appointment for the procedure which was November 25, 2014!  Finally the day had come I had done all my research on endo, what they would do in the surgery and what kind of treatment after. My mind was blown! I couldn’t believe that someone finally put a title to something I’ve been unknowingly dealing with for years! It finally made sense me and my boyfriend tried for a year almost to get pregnant and nothing happened! We knew it wasn’t him so obvious all signs point to me. I was so sad and happy and anxious all at the same time! I went under for surgery, and when I woke up this first thing I did was lift up my gown to see my cuts and I saw more than one cut. At that point in time I knew without him telling me that I definitely had this disease. I was fully aware of my surroundings and what it meant to have more than just the cut for the camera. My doctor came in and told me the news. Stage 4 endometriosis and endometrioma, they removed a significant amount of endo, and drained a chocolate tumor on my left ovary (which is what the ER people said was my period starting. Chocolate is a term for dark brown blood) he told me my tumor on my ovary was hemorrhagic and my left ovary had coiled around like the end of a candy wrapper. My first thought is shit. I’m never going to have a child.

They gave me the Lupron shot and sent me home! I think that shot was worse than the surgery and the news of having stage 4 endo all together! I was so tired and had hot flashes constantly! And damn was I a monster! I refused the second dose. I could not handle it! For some Lupron is great and that’s awesome for those of you can handle it because for endo it’s the closest thing to a “cure” we have gotten! At least for 6 months right? But for myself it’s not worth it.

This journey has been hell! The pain, the rejection from doctors, the doctors thinking you’re a pill addict for asking for something stronger than naproxen and tramadol. I’ve known about this disease for 8 months but if my calculation is correct I’ve been dealing with the side effects for roughly 5! 5 years of me telling doctors something isn’t right. I thank God for a diagnosis and finally having that relief of not having to convince someone ever again that I know something isn’t right and being told I was fine just need to “toughen up”.

But I’m also sad. I still haven’t gotten pregnant I will start seeing a fertility specialist in about a month in a half and even that has no promises. We have decided that if all else fails we will do foster care/adoption. Foster care with the intent to adopt.

I think the most important thing to remember with endo is not to let it control your life. I don’t need to toughen up, I know I’m tough! I know some can’t work but for me I think my job is important to continue doing regardless. I will always have pain I can decide to sit and let it control me and not work or live my life or I can get up every day and face this hell with a smile on my face. I fight through the pain! I have a physically demanding but rewarding job. I’m a developmental assistant for mentally handicapped adults in a mental institution for the state of Missouri. Endo will never stop me from doing what I love. Endo will not take over my life!

I will not let this disease win! And neither will you! You have support! It’s physically and emotionally exhausting I know, but it’s not you. Do not let it consume you. The first few months after surgery I threw a pity party, and that’s ok every once in a while. Throw yourself a pity party then get your ass up and go live your life! I know this is long and probably a scattered story. I’m not a writer. This is just my story.

  • Raven

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Meryl’s Story

Meryl Levy Treiber (Meryl Levy is my legal name) Hysterectomy (my hysterectomy was partial and that I still have my ovaries and cervix) April, 2010. I was overweight and too trusting of doctors. I had an obgyn tell me I had a fibroid and you don’t do anything for them. I never questioned until I hit the too late mark, when it was almost 8 centimeters and I looked 7 months pregnant.

I was only diagnosed and treated correctly because the pain was so bad, I thought my IBS had got worse (another nightmare). Learn from my experience and explore all your options first! Just because one surgeon tells you hysterectomy is the only answer, it doesn’t mean it is. Also, just because you are told you aren’t a candidate for laparoscopy, doesn’t mean you are not. There is no reason in this day and age to have a full belly incision. Mine is one 6 inch line at my bikini line. However, I was left with nerve damage from a retractor in trying to save an ovary. I’m not in menopause, but was left in excruciating pain for well over a year until a neurologist prescribed two antidepressants that combine to trick the pain into not sending pain signals.

Here is the description of the process Uterine Fibroid Embolization. This is non-surgical! http://www.sirweb.org/patients/uterine-fibroids/

http://www.columbiadoctors.org/prof/dcsperling 212-326-8874 David Sperling is the Interventional Radiologist. He would explain it a million times better than I could, but they inject embospheres (little plastic thingys, not as bad as it sounds) into the vein that feeds the fibroid. It cuts the blood off and the fibroid dies! Can you imagine? Oh to go back. I was scared of the injecting non-natural substances. This process is used all the time to save women from bleeding out during child birth. Ironically, he promised me pain, intense pain for a few days afterwards akin to child birth. I’ve never had a kid, but that scared me too. Here is the main point, try this. You can always have the surgery if it doesn’t work!

Surgeons: Elizabeth Poyner my surgeon. She caused the nerve damage and denied that was the diagnosis, but she is the one of the top rated Gynecologic Oncology surgeons. 1050 5th Ave, NY, NY 10028 212-426-4657

The robotic laparoscopic surgeons Noah Goldman and Bill Burke. I saw Goldman. He told me I was a candidate, even though my surgeon said no. I wish I had gone to him for my surgery and for sure wish I had explored the no surgical option below before that! 201-634-5401. They are in Bergen county, NJ and like Poynor are Gynecologic Oncologists, but treat non- cancer patients also. Valley Hospital 201-634-5401 is the number I have. The website for Valley Hospital says 201-447-8012 http://www.valleyroboticsurgery.com/The-Surgeons/Noah-Goldman-MD

Anybody should feel free to reach out to me. I’ve counseled other women and I’m happy to try to help….

Please join our facebook group Our Journey With An Incurable Disease

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Amy’s Story as of today 6/12/2015

My first memory of my cramps was when I was just 14 years old. I was on vacation with my family in Florida at my Grandmother’s house. We were there for a fun family vacation. However, my cramps were so bad that my mother insisted that I do a shot of brandy to warm my insides up. I was only 14! That is how my period started and it has continued to affect my life on a constant basis.

It is now 24 years later. I have debilitating cramps twice a month, once for my menstrual cycle and once during my ovulation. When I get my period I am in bed for the majority of the day. If it is a work day I tend to go in late because of how much pain I am in. I have to wait until the heating pad and the mix of drugs I take to control the pain kick in. I lay and cry every month wondering why me. Even writing about it, I can feel how blinding the pain feels. It is like a wave of pain coming over me. I can tell when it is about to start with little pangs of something inside saying “get ready, I’m coming”… And it does, usually with a vengeance and always worse than the previous month.

I never met anyone who had cramps like I did. I remember going to so many OBGYN’s over the years and never having a connection with any of them. I would ask for something to stop the pain. All I would get was to take 2 Advil. The best was when I asked one of the doctors if birth control would help and she looked at me and said “if you wanted this you could have asked for it right away”, as if I was making up the reason as to why I wanted pills in the first place. I was totally disgusted and felt I would never get any help. The fact is these doctors I went to had never thought about listening to me and looked at me as if I was faking as if I just wanted pills or something other than to be pain free.

Finally in October 2006 my mother said, “I know you like a woman OBGYN, but maybe you should really try mine. He is very nice and caring”. So, off I went to my mother’s OBGYN. Well, he was a miracle worker from my first appointment. We sat in his office and talked for a few minutes before anything. He tilted his head at me saying he understood. That was a first! He did a little exam and said I believe you have endometriosis. He said he would like to do a little procedure called a laparoscopy as soon as possible. Within 6 weeks I had my first lap procedure in December 2006. It went well except one of my arteries snapped mid procedure and he had to do a little extra cutting to sew the artery. I stayed in the hospital to be looked at over for the night. However, it was confirmed I was riddled with endometriosis lesions and scar tissue everywhere. My recovery took a bit longer due to the mishap. I was relieved when I did get my first period it was nowhere near the pain of my past one.

I soon went on Lupron and had every side effect that is listed with the use of this medication. Hot flashes were awful; it would almost feel as if I had bugs crawling on me when one was coming on. Depo seemed to work the best for my pain and keeping the endo symptoms at bay.

Unfortunately my miracle doctor retired but lucky enough for me his replacement was a young, gentle nurturing old soul type of woman. She listened. I remember my first meeting with her where she hopped up on the counter in the examination room and just let me vent and chatted with me for almost an hour.

I was married in September 2009. My husband Rey and I were talking about having kids in the future and we started talking about coming off of everything for my body to adjust. We didn’t need to chat about it too long.

In October 2009 I took myself to the emergency room because I could not even walk. I thought I was having appendicitis! I had a few tests run and sure enough it was a mass endometrioma that was the size of a grapefruit causing severe pain and the fear of losing the functionality of one of my ovaries. The ER OBGYN was so concerned he said “if you do not have this removed within 48 hours I will personally operate on you myself”. He was serious and yet had such a great bedside manner and I felt comfortable with him and understood the severity of the issue. This immediately put fear into me and made me realize how severe my disease actually was.

The next day I made arrangements with my OBGYN for surgery and I was on the operating table within 36 hours. Within that time my endometrioma grew to the size of a volleyball! Luckily it was not attached to anything and was just a mass sitting happy behind my uterus and ovaries. Once again, that same day surgery turned into 3 days in the hospital this time due to a low white blood cell count. After surgery I started on Nuvaring. Oh boy, was that an experience and one that I do not want to talk about. I was only on that until January of 2010 because we were going to start to have a family.

Also in January 2010 my insurance changed and my doctor who I loved was no longer covered under my plan. Feeling anxious about finding another OBGYN that I felt comfortable with, I reached out to the OBGYN I had met in the emergency room and wouldn’t you know it he was in my plan!

Under his guidance I started getting tested for any potential fertility issues. My first test was the horrid HSG where I found out that I had a blocked fallopian tube. This was hard to hear because I was 32 at the time and knew my window of becoming pregnant was closing every year. My husband and I chatted with my doctor and discussed what we were going to do. We were told to try naturally for the next few months. We tried and we got nowhere with conceiving. I also had ultrasounds every 3 months to be sure of no more growths.

We went back to my doctor in June 2011 to discuss one of my follow up ultrasounds. Unfortunately, he was away on vacation and we had to discuss this with his covering doctor, who, like many others before, had no idea what I was going through. It was the first time my husband understood how cruel some doctors could be. She said “Well I guess you should start fertility treatments”.

In July 2011, after almost 1 ½ years of us trying to conceive naturally and having to deal with my periods getting worse and worse every month, we started going to a fertility clinic. We sat with the doctor and he explained that with endometriosis it is almost a waste of time to try to do IUI. Of course our insurance plan covers IUI and not IVF.

Our first try with IUI was in September of 2011. My husband and I had fun with the whole thing. It was something we had to go through and we made the best of it. The chlomid was awful and I once again started getting those awful hot flashes. We kept focusing on the end result. A positive pregnancy test. However, we did not get a positive test but a big fat negative. It is amazing how all the hype you have instantly turns to the greatest fall ever with one phone call. We waited a cycle and tried it again in November of 2011 with the same phone call with the result of a negative. It was the holidays and my husband and I spoke about it and decided to not try again until after the holidays and then sit down and figure out the next step.

All of a sudden February 2012 was upon us. One morning, once again I woke up in excruciating pain and decided I could not take it anymore. I called my doctor and was so happy, even though he had moved practices, he was still in my plan. We made an appointment for that week. The reason why I love my doctor so much is how he works with his patients. I was called into his office and chatted with him about life and what had been going on. He said he was thinking about me because he just came back from a conference where the main topic was endometriosis and “Padma from Top Chef was there”. He was rambling on and on about the whole experience. I was thrilled that I had an appointment with him shortly after such a conference. He recommended another lap procedure to be done the following week. So here I was scheduling another surgery for this incurable disease. The next week we chatted before going into surgery about trying to clear my blocked tube and clean me up… Good as new!

The surgery went well. He was amazed at how bad my insides were. Everything was glued together from scar tissue and endometrioma lesions. He cleaned up all that he could and tried to unblock my fallopian tube. He also noticed that my other tube was also now blocked.

I went home to recover and waiting to go back to see him the following week for my follow-up appointment. It was then I saw the pictures, my jaw dropped at how inflamed and horrible my insides were. I am so thankful for the doctor to get me cleaned up and alleviate my pain.

Unfortunately the elephant in the room was that now I don’t have the function of either fallopian tube. The only option for us at this point was IVF. With our doctors recommendations we were off to search for the best doctor with a comfortable price since this is now all going to be out of pocket.

The fact that I am a woman and have the right to being a mother, my body created to do so and I couldn’t without the help of science didn’t matter to me. It is the lack of insurance, the lack of help for insurance is what bothers me. Why do I pay for health insurance for them to deny me, a woman, to have a baby because I don’t have working fallopian tubes? This isn’t a cosmetic procedure, but a disease.

In March 2012 my husband and I went to a few doctors and found the one we liked with a very personable staff. I feel that is almost more important that the doctor in a way. The amount of time you will spend in the doctor’s office you will want to be surrounded by staff that help guide you and can answer every question. No question off limits!

We decided to go for it. We were going to start all the fertility drugs in April, the following month. IVF is a science game. There are no ways to make sure it works. It still is a law of averages that you must be willing to accept. The 3 weeks leading up to the pregnancy tests were busy – doctor’s office every other day, shots everyday then multiple shots per day, procedures and pills. We did everything we had to. However, that call, that most anticipated call, was the biggest blow to us ever. I thought I would keep it together. No way! I lost it. It was the first time I have ever felt that my broken body is what is causing all of this. All the while, my husband, the kind and sweet and loving man he is, sits there, looks at me and says “You are not broken, you have a disease that is why this is happening, it isn’t you as a person”. Just a week out of that phone call, we were back in my favorite OBGYN’s office talking about what he thinks we can do. His positivity exudes from him saying it will happen. As we leave his office, we know we are ready to try it again.

And we did, in July 2012. This time we went back to our old ways of having fun with it all. We were hiding it from everyone not wanting the pressures from others. So we would run off into the bedroom for shots while company was in the other room. The best one was in the parking lot of a Furthur concert in Brooklyn, my hubby shooting me in the leg while laughing at what we are actually doing. We felt that there were probably more drugs going on in the parking lot then in our car at that moment.

The positive result of this cycle was we had 5 embryos. We implanted 2 and froze 3. That is the only positive that came from it. Well, that and the liquid lunch where we escaped our reality for a bit. I’m not really sure where we will go from here. We do have 3 frozen embryos, but not sure if I can mentally do it again.

Unfortunately, the last appointment I had with my favorite OBGYN, felt like many others I had previously, with no help in sight. That was November of 2013.

In February of 2014, I was lucky to find another OBGYN. He was very sweet and reminded me of my first experience with the doctor who got me. I was happy to have someone in my corner again.

In 2014, I went to a specialist in robotics surgery, my OBGYN referred him, not because he was an endo specialist but he was good at the surgery. I was so displeased with this Dr’s attitude and lack of empathy. I felt like he was doing me a favor for seeing me. I was literally crying in his office, he was one of those cruel people who don’t know endo and thought a hysterectomy was my only choice for a “cure”. I was in tears when I called my husband about it. By the time I reached my husband’s office, he was on the phone with Sabrina from Dr K’s office. The doctor is an endo specialist in NYC. She was so helpful of what we needed to do and how she would be in our corner as far as fighting our insurance company for coverage. I was in a much better mind frame after lunch.

That very evening, I had the honor of going to The Blossom Ball to volunteer, this event was hosted by Padma Lakshimi and her Dr, Dr Seckin. It was amazing, so many people supporting the endometriosis cause and I met a lot of fancy shcmancy people. SO with Endo girls all around me I felt empowered to do what I needed to do.

We waited until April of 2014 to make an appointment with Dr K, he does excision surgery and the initial visit, since not covered by insurance is a 100% out of pocket cost. We felt very comfortable with him and he really understood the disease and knew what needed to be done. His office administrator also knew her role in getting the surgery approved with insurance.

So here I was June 2014, getting yet another surgery, this time with a true specialist of the disease to excise ALL OF IT. I woke up from surgery and the results were very good, they removed all of it. I was diagnosed as a stage III of IV stages. Now the trick was to not get it back. I quit caffeine (which is a trigger) immediately and have not turned back to it to this day.

On my most recent follow-up with Dr K, in January 2015, I was diagnosed with adenomyosis, this is where the inner lining of your uterus breaks through the muscle wall of the uterus. Nothing you can do to fix it other than removing the entire uterus. Such is life I guess.

As of June 2015, I feel good. I am currently on birth control to control my hormones and to stop my periods from being so awful. It has helped some. I am sure I have a long road with my endometriosis, but I embrace it as there is nothing else I can do … other than help others. That is what I intend to do!

I must say that if I did not have the love and support by first of all my husband, who has been with me since before the very first surgery, I would be lost. He continually supports me and understands how bad my body feels during my cycle. My family has been so supportive and my amazing network of friends. I am happy to say I am not alone in my disease but everyone in my life is also affected by it. I thank all of them for being there as my support team and understanding what happens to me.

Thanks for reading –

Amy Montes de Oca

Please join my facebook group Our Journey With An Incurable Disease