I Understand Endometriosis

"AWARENESS BRINGS IMPACT, WHICH CAN CHANGE OUR WORLD.

LET'S CALL AWARENESS UPON THIS DISEASE CALLED ENDOMETRIOSIS."

- LAURA HERRERA

What I want this site to do

Too many women's lives are impacted by Endometriosis, which many doctors and this world do not fully understand. It is my goal to not only share my story and journey; but to also spread yours in order for the medical world to take better action.

Use this site as a resource in closing the gap between you and others. As we all learn more about Endometriosis and take the time to understand this disease, be it an endo patient, loved one, friend or medical professional- we all become a part of the "I Understand Endometriosis" movement.

Please note, this site is for resource purposes only. Any and all diagnoses can only be given by a doctor. However, use the information and tools provided to help understand the disease better and to get the assistance you need in finding deserved help from a medical professional that fits your individual case.

What needs to change in the Endometriosis world of medical care

• More doctors studying Endometriosis and specializing in it only
• Counseling/Therapy for people diagnosed with it
• Support systems in place for people helping endo-warriors
• More resources and tips for endo-warriors and supporters
• Endo-warriors, loved ones, friends and medical professionals spreading awareness
• More insurances covering the best treatment option - Advanced Excision Laparoscopy
• Better understanding of symptoms in women

Medical descriptions of Endometriosis

You will find many different definitions online. However, none of them really touch on the fullness of this disease. Each woman is impacted differently. Some more severe than others, but none the less any woman battling this disease suffers in her own way. For a list of common symptoms go to: Endo-Info.

Mayo Clinic's definition on their website:

Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs.

With Endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When Endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other.

Endometriosis can cause pain — sometimes severe — especially during your period. Fertility problems also may develop.

source 

Mayoclinic.org

Endometriosis Association's definition on their website:

Endometriosis is a puzzling disease that affects our hormones, our immune system (the system that fights germs and cancer), and the digestive tract(the system involved in the breakdown and absorption of our food).

The name comes from the word “endometrium” which is the tissue that lines the inside of the uterus. Each month, or cycle, this tissue builds up and sheds, causing the normal bleeding experienced during the period. With Endometriosis, tissue like this is found outside of the uterus in other areas of the body, such as the abdomen, intestines, bladder, and other places. In these other locations, the tissue develops into what are called “growths” or “implants.”

Like the lining of the uterus, endo growths usually respond to the hormones of the menstrual cycle. They can build up tissue and shed each cycle causing bleeding.

The result of this bleeding and the immune problems that are part of endo are the formation of scar tissue, pain, and other complications.

source

Endometriosisassn.org

My Story - Laura Herrera

Hello my name is Laura Herrera and I battled Endometriosis and its sister disease - Adenomyosis for 11 years. My journey has been a long one- full of pain, heartache, loneliness, hopelessness, love, survival and strength. I hope my story helps you understand that you are not alone. If you have been on this journey trying to understand your diagnosis or if you have been questioning if you are battling Endometriosis- your story matters too. 

Around the age of 23, I started getting sharp knife-like pains throughout my pelvic region. Within the first year the pain steadily increased and I found myself vomiting whenever the pain became unbearably severe. The first time I went to the ER it was due to uncontrollable vomiting that had me bent to its will of over 15 times. By the time I made it to the ER, my strength was gone and I could hardly walk or talk. My body in shock as it struggled to be at peace; sweat drenching my body due to cold sweats. It would be the first of many ER visits over the years. This is how my journey began in 2006.

Throughout the years, I would go to the ER around 1-2 times per year; when it was at it's worst and I couldn't stop vomiting. Early on, I began to know what my body could handle. I was usually able to withstand the severity of the pain and not let it show to the world. However, when it would get to the point that the pain would make me vomit and I couldn't stop- I would have to go to the ER. I always counted the costs before going, because I didn't have insurance for years. Before I was diagnosed, no doctor could give me answers and honestly all I could care about while at the ER was stopping the vomiting and the pain. 

The short end:

• Took 7 years to be diagnosed
• Countless doctors - at least 10
• Multiple treatments and therapies to try to help with the pain
• Total of about 17 ER visits over the years
  
• 4 surgeries within the last 4 years (total of 5 including my first surgery when I was 17 for a large cyst removed off of my ovary)
  
• Thousands and thousands of dollars

After years of going through debilitating pain and finally getting insurance; I had my first exploratory laparoscopy surgery around the 7th year. This surgery finally gave me answers after all the years searching for them. I was diagnosed and the doctor found my colon and uterus fused together by Endometriosis scar tissue. I cried hysterically when I got the news as I sat in my hospital bed. One- because I was finally relieved in knowing that I wasn't crazy all these years and that I had a name of a disease that I could now fight like a warrior; two- because I didn't know anything about this disease and the thought of my organs being fused together scared me.

The doctor did not detach the organs because he said he didn't feel comfortable and suggested I find a skilled surgeon to do so. The next path on this journey had me going to multiple doctors and surgeons for options. Many of these doctors and surgeons warned me to not take the step of another surgery just yet because it could lead to more scar tissue. I was asked to try other treatment options first. I was put on different birth controls and an IUD was placed in my uterus to try to help with the pain and heavy bleeding. I also went through pelvic floor therapy to try to help with the pain.

However, I still battled the pain. I still went to the ER due to vomiting and pain about 1-2 times per year, even after these many treatment options.

Two years later after the first laparoscopy, I had a second laparoscopy surgery, where they detached the colon and uterus. However, afterwards, the surgeon told me they didn't find any endometrial tissue. I was upset because it was like she was saying I was mis-diagnosed and I knew I hadn't spent all these years with a lie. I knew my body and the pain I had dealt with had an underlining cause. 

Within months of this second laparoscopy surgery, I still had uncontrollable pain and sometimes vomiting and it didn't get better. I regretfully decided to go through a lupron shot to help with the pain. The lupron shot basically puts your body in menopause so that you suppress hormones and in return it should stop the pain. I at the time didn't know the horrible side effects and that many well skilled Endometriosis surgeons would never recommend it. This is because of the harmful things it could do to your body. This lupron shot only lasts up to 3 months and you have to get another. Once you take two shots you CANNOT take another because of the HARMFUL things it can do to your body long term. This part will be said by any doctor prescribing it. After the first shot wore off, I could tell that it was only a temporary fix for my body, when I started getting severe pain again. I decided to do the next shot, but to my troubled heart, I decided that after this next one wore off that I would then go with a hysterectomy. I couldn't deal with the pain any longer and the idea of having to go through more hopelessness and going from doctor to doctor to try to get answers and help was too much to bear. I felt like my fight was over. I had at this point been battling this disease for a total of 9 years and I was TIRED and WORN OUT. Tired emotionally and physically. I knew what my body was capable of after the next shot wore off and I didn't have it in me to fight any more. I told my parents that this is what I was planning to do. I also told my sister, who was a support system for me and my plan B to be a surrogate if I ever decided to go through with a hysterectomy or couldn't carry my own child. (A gesture she offered to me the year prior. She told me that she saw a picture of a mom who became a surrogate for her adult daughter when she couldn't carry her own child. She told me after seeing that picture she wanted to do the same for me if I ever needed it. I responded and told her I had seen the same picture on facebook months prior too and that when I did I cried and cried. Just seeing the beauty of that kind of love and how I thought in that moment, "I wish someone could do that for me if I need it." Once she told me her desire to do that for me, we both cried for a long time holding each other, as words can not express the gratitude and love I felt in that moment. Including the severity of the disease and issues it had caused in my life, on top of the unknowing to what it could continue to do and steal in my future.) We all were on board and my family knew I was done fighting.

Thankfully, I had great friends who encouraged me to not make this decision without doing some research in finding a true specialist that only dealt with Endometriosis patients. I searched out for the best specialists in the country. I made a leap of faith to travel from Virginia Beach to New York City in hopes of a doctor understanding what's going on inside of me. I found Dr. Kanayama; he was my last hope. Just in our first meeting and the tests he performed, he was able to find more things going on inside of me than any other doctor had. He knew what to look for in an ultrasound and see what truly was going on. Prior to him I had taken dozens and dozens (too many to count) ultrasounds and no doctor had ever been able to pin point anything. Not only did he see things in my ultra-sound, but he truly understood the symptoms I was having and asked me about things I may be going through even before I could ask him. I knew I was in the right hands.

He said I would need surgery and that a hysterectomy is not the way to go. One - I had never had kids and two -hysterectomies don't always cure the disease. He told me there is no cure for Endometriosis; however, the best option for treatment is through advanced excision surgery. This type of surgery roots out the disease and doesn't leave any trace of it behind. Most women are only given the option of going through an ablation surgery, where they laser off Endometriosis. However, the rate of it coming back is extremely high because it doesn't get to the root of the disease. There are not that many surgeons in the U.S. that are trained on how to do advanced excision surgery. 

During this next surgery, not only did he find Endometriosis, but I was at the most severe stage -Stage 4. He worked tirelessly on rooting out the disease everywhere he found it. This included on my ovaries, uterus and on many intestines. The Endometriosis scarring I had, fused many of my organs together. He was able to separate wherever many organs were fused and was also able to shift my uterus back into its normal position. Prior to surgery it had shifted down to the right, pushing on my ovary. I had Endometriosis lesions near my sciatic nerve and he was able to root that out as well. The mirena IUD I had inserted years prior had lodged into my uterus muscle wall and he was also able to remove that successfully. One of my fallopian tubes was blocked and he was able to open it. All of the above contributed to the pain I would suffer from.

After I came out of surgery I found out how successful he was in rooting out the disease and I cried hysterically. Words can't describe how I felt in that moment. All the grief, sadness, heartache, pain - physical and mental, tiredness of fighting - all came out of me as I whaled with tears. This was to be my saving grace.

Unfortunately, during the healing post surgery process, I still noticed I was having the same pain. My doctor and I both thought maybe it was post surgery pain at first. However, as a few months went by and I still wasn't getting any better and the pain was intensifying, so we decided to do more tests. An MRI showed I had Endometriosis inside the uterus. This is the sister disease to Endometriosis called Adenomyosis. My doctor said depending on the severity and locations of the disease inside the muscle wall of the uterus, I may need a hysterectomy. A hysterectomy is the only way to undoubtedly cure Adenomyosis, because the disease is inside the uterus itself. Hysterectomies for Endometriosis don't always cure Endometriosis because Endometriosis can many times be found outside the uterus on organs and ovaries, even if the uterus isn't in place. He was skillful enough to say let's go for another surgery and if I can root out the disease successfully in the uterus then I wouldn't need a hysterectomy. His goal was to save my uterus and give me the chance to carry my own child some day.

In the medical field, most unskilled surgeons go straight for hysterectomies with Adenomyosis. Crazy enough many who do surgery diagnose Adenomyosis only after the uterus is removed and has gone through a biopsy. This is why going with a skilled surgeon and one that not only understands the disease, but can successfully try to treat and root out the disease is so important.

The surgery was a success! He was able to save my uterus and root out the disease everywhere he saw it. When he cut into my uterus, a large cyst ruptured that was deep in the muscle wall. He said it ruptured like a volcano and this made him happy. I laughed when he said this.  "Happy?" I said.  He replied, "Yes, because this showed me this was a large part of your pain."

This surgery wasn't done just through a laparoscopy, it needed to be done also through a bikini cut. He needed to be able to see the uterus with his naked eye and be able to get the disease out more extensively than just through a laparoscopy. Afterwards, he said he basically reconstructed my uterus, because he had to do so much work on it due to the severity of the disease inside it. On an ultrasound weeks later, he showed me where I could see my stitches. They basically covered almost half of the width of my uterus.

Healing from this past surgery has been more intense than the last ones done through laparoscopy, due to me being cut in addition to going to a combine laparoscopy in the same surgery. However, even through the pain of healing and basically having to learn how to walk again after a few days from surgery, it has all been worth it. I am now months into my healing process and for the FIRST time after ANY surgery I am not going through any Endometriosis pain. I've had pain, but I can associate it from post surgery pain. I can tell the difference. My doctor has had to make it clear to me in both surgeries that there isn't a cure for Endometriosis, but it can be treated successfully. I can see how the combination of these two surgeries has truly helped me. I've been able to carry on with life, not having to bear a burden of worry of when the next bout of debilitating pain will be. I feel my life is being restored and I am so grateful.

At my 5 month check up with him, we did tests and exams and there was no sign of the disease anywhere! 

As of March 4th, 2019, I just had my one year check up from the last post surgery follow up and it was confirmed that there still is no sign of either disease in my body!

I hope my story helps someone and I have chosen to do my best in being a voice for the Endometriosis world. I suffered for too long and many of you have as well. I will stand up and fight for our rights in getting this disease's awareness spread. We need the medical world and the world itself to truly get a better understanding of these diseases, so that many do not have to go through un-needed suffering.

THERE IS HOPE!

Full description of what it has felt like and how it has affected my life

Pain:

Came on like someone stabbing you with long strikes all over and simultaneously inside the pelvis. It also felt like a rope is inside of you being twisted and stretched on both ends with the rope freing. Some woman have described the overall pain to being worse than delivery pain. I haven't had children, but I can see how this is possible. The pain I would deal with was always more severe than the pain I felt after any surgery. Surgery pain was always a breeze compared to this. I've read where others have said the same thing. I've also read that the pain can for some be as intense as appendicitis pain. 

Chronic fatigue like symptoms:

If the pain became so intense or if it came out of nowhere, it completely took the wind out of me. It's as if you can feel your energy leave your body and all strength become completely gone. You stand still and feel like you are going to faint. Every ounce of your being is used to make decisions that normally wouldn't take a second . Every ounce of strength is used to just pick up your arm. You feel a disconnect from your mind and body. It takes a while for your brain to think of what to do next and then it takes even longer for your body to catch up to what your brain just said for it to do. Deciding to reach over to pick up something takes forever. Takes so much strength and will power in the mind to do anything. The closest way I can describe this type of exhaustion is how you feel with total body exhaustion during the flu. However, this sadly is worse because on top of the exhaustion, your body is in severe pain.  All you can tell yourself is that you will get through this pain. You will make it.

Charley horse pain in my back: 

My back felt like if I moved the wrong way, it would break.

Pain that radiates like fire:

This type of pain would come from my pelvis and down the legs and throughout the bottom of the back. If I was laying down while in severe pain, I would wither and shift constantly with my legs trying to get relief for my overall body. My head would rock to the left and to the right while my face grimmest in pain. I never understood this until recently when I looked it up: this is one way the body tries to relieve itself of severe pain.

Cold/fever sweats:

I would be absolutely cold with shivers and be burning up at the same time. All the while I would be sweating profusely. Many times if I was under the blanket and if air would get to me I would have to jump up and vomit because the air would get me so cold while being feverish and sweating. Many times at the ER I would have the nurses say something about how much I was sweating. It would make it hard for them to put IVs in sometimes because my entire body's pores would be sweating including my arms. 

Uncontrollable vomiting:

Most of the time, by the tenth time I would be start to vomit bile and would have to go to the ER. On average I threw up around 15-20 times in total, whenever I had to go to the ER before I got relief. Throughout the years going to the ER , I went about 17 times within 11 years. With severe vomiting and pain I would become so weak to the point I could hardly talk or walk. Color would leave my body and I would become whitish or gray. I've had doctors tell me how gray I was because of dehydration. In addition to this, I would be faintly. Many times I would need someone to help me walk and I would have to lean on them the whole time. Many times at the ER I was too weak to walk to the bathroom. They would either bring me a bed pan or chair toilet next to my bed. I hated this and would try my very hardest to get to the bathroom, but if I was too weak I didn't care about the embarrassment and would let them help me and wipe me.

Because I had been to the hospital so many times, I would get good about what I needed to take to the ER. I knew what to pack to make my visit the best I could make of it. I started bringing my own blanket, toothbrush, vaseline for lips, deodorant etc.

Bouts of pain and duration varied:

For me my body had no time frame or way for me to know when I could expect it. Some doctors think Endometriosis patients only get pain during their period. For many it can happen any day and many days within the month -this was my story. The pain could last up to four hours on average even with high doses of pain meds. All these symptoms would be present each time, except the cold/fever sweats and uncontrollable vomiting. This only happened occasionally when it got to its worse. There would be times where I would vomit only once or twice and that's what my body needed to release and be at peace. I could then rest and sleep. However, when it was at it's worse and not one or two bouts of vomiting helped, it would be accompanied with cold/fever sweats and uncontrollable vomiting. These always ended in me going to the ER for control of the nausea and vomiting through IV meds. Once my body got to a certain point, this would be the only thing that would settle it. 

In combination with pain, I would experience severe swelling:

I would swell up to 4 inches on average. It could at times, take days to go down. Only recently I found out it is a symptom called endo belly. For a description of this go to Endo-info page.

Aftermath from severe pain:

Days after severe pain, my stomach would be swollen still. My insides would feel heavy, as if all my organs were settling at the bottom. It would be hard to walk - I would lightly waddle and walk slowly for days, as if I would just after surgery. It was the same kind of heaviness. 

Fear of taking pills to help with pain: 

I ONLY took pain pills when pain became unbearable. I hated taking pills. My body at some point around the 10th year had become accustomed to high doses of pain pills. After many years of taking up to 1000mg of over the counter pain pills, only 1200 to 1300mg would be the only thing that would even touch the pain and sometimes only slightly. I knew medically speaking, it was not healthy to take such high doses, but my body wouldn't succumb to anything else. I was constantly scared my liver had taken a toll from all the years of having to take pills when I needed to.

How being dependent on pain pills affected my life:

I ALWAYS had pain pills on hand- in my purse, in my desk at work, in my cabinet at home. I was never without them or nausea pills in case I ever needed them. As stated above, I ONLY took pills when pain was unbearable or when a sharp pain came about that I knew would start the cycle of severe pain. I hated having to go in my purse, desk at work or cabinet at home with the fear people would hear my pill bottle and think "oh here she goes again."

I also hated being looked at by medical professionals like I was either addicted to pain pills or could easily succumb to it. I've had to explain more than once that I NEVER took pills when I wasn't in pain. 

Having throw up bags on hand:

I ALWAYS had grocery bags in the side of my car door and in my trunk in case out of nowhere it hit and I had to vomit. I have spent many times vomiting in my own car and others throughout the years.

Fears I had with driving:

It was horrible to be driving through pain or driving and the onset of pain would come out of nowhere. During these times, I would pray the whole time that I would be safe and be protected. There have been times where I had to pull over to rest before continuing. This was a big fear of mine- scared it would hit during driving. If I was in severe pain at work and knew I couldn't drive, I would have to have friends take me home or have someone pick me up.

How it affected me when I was in public while vomiting:

I've had people stare at me like I was a drug addict or contagious while vomiting at the ER and anywhere else I've been in public battling the pain and uncontrollable vomiting. I can't blame them, I would be grayish or whitish, sweating head to toe, eyes bulging out, eye bags darker than dark, lips dry/cracking and I could hardly keep my head up. I hated going through this in public, with the fear of how people viewed me. Questions of how they thought about me would swirl around my head on top of everything I was going through. I would at times, muster enough strength to tell people around me, "Don't worry, I'm not contagious", just so I could feel like I had some control of how they viewed me.

How it affected my life when I worked downtown Chicago:

My commute into the city and back took 1.5 hours each way. I would drive to the train station, take a train in for about 45 min and then would walk for about 30 min to work. Days and times I would be in pain would make it even more OVERWHELMING. I would be in limbo with no place to rest and the gnawing feeling of not being close to home and my bed was a lot to handle. If I was walking while in some pain, it could take me twice as long as it usually would or even longer.

• I have thrown up in trains, in cabs, on the side of the walkway to the train etc. when the pain was at it's severest.
• I've laid across train station benches, train seats, workplace floors etc. - all in pain and while vomiting. 

Fears I dealt with at my jobs:

I have always been my sole provider. Therefore, I would only go home if it was at its severest and I couldn't push through. I didn't want to seem like a non-hard worker and constantly leave, because the pain was never something I could anticipate. Most of the time I would struggle through the pain, trying not to let anyone know I was dealing with it, so I wouldn't be made to go home to rest. I didn't want to lose my job, therefore I always counted the costs before leaving work.

• Would I be able to make ends meet, if I left early today?
• Would I seem like I'm looking for sympathy, if I bring it up?
• Can I keep pushing through today until I get home?

How it affected my work life at different jobs:

Thankfully, no matter where I worked- I had great support. 

I had one manager that had a system in place in case I started getting debilitating pain that could lead to vomiting. I would tell a friend to get her, she would then discreetly take my from my desk and walk me to a side room. Here she would put on a fan, get me a water, bring me the nearest trash can and turn off the lights for me to rest through it. If I started vomiting and needed to go home, she would set someone in place to call a cab. That level of support was priceless. She never made me feel like I was damaged or seeking sympathy. She knew I sometimes just needed a moment to get through the pain and if it got too severe, then the next step would be to go home. If this happened and I did go home, the following day she would ask me to work from home so I didn't have to commute into Chicago. 

Doctor visits and medical options:

• Went to holistic approach doctor- took multiple herbal supplements
• Changed obgyns at least 4-5 times since diagnosis/ went to multiple doctors beforehand as well
  
• Saw multiple surgeons
  
• Went thruogh pelvic floor therapy
• Multiple birth controls
• IUD placed to help control pain and heavy bleeding (in the end it became lodged in my muscle wall of my uterus)
  
• Added Lupron shot (which last surgeon said they never recommend this. It has horrible side effects)
  

Emotional toll:

• Multiple doctor visits would make me feel hopeless and not understood. This went on for 10 years until I found a specialist.
• Traveled to multiple cities to get help
  
• Have spent countless hours researching this disease on my own. Found many things that correlated with me only due to me searching for myself. My last doctor was the only one that hit everything that I knew was going on in my body and more.

Depression:

Acne:

What it did to my relationships:

• I held the pain to myself most of the time
• I never wanted to be a burden, so I didn't talk much about it even to family and close friends
  
• Shielded away from relationships, because I didn't want to get abandoned if they got tired of this
• Feared how potential men in my life and people would view me
  
• Felt I was broken and no one would want me
• Felt truly alone 

I only would allow those closest to me to see when I was in pain. Most of the time I hid, because even if they saw me in pain time and time again, I knew they will never know this type of pain. Nor would I ever want them to know that pain, so it's hard for them to relate.

Fears it brought on:

• Fear of not being loved
• Fear of no one understanding, including people and doctors
• Fear of not being able to keep my job, because of how random I would feel sick
• Fear of never getting ahead in life, because I felt stuck and scared to move forward due to not knowing when pain would strike
• Fear of not being able to go after my dreams and goals, because I didn't know if I would be stable all the time and reliable
• Fear of not being able to carry my own child. Words can't describe how much grief and sadness you go through thinking you may never be able to feel a child grow inside you like God designed you to do. 

Financial toll:

• Didn't have insurance for years-at least 6-7 years into it
• Thousands of dollars over the years piled up from ER visits, doctor visits, treatments, surgeries etc.
  
• Around 17 ER visits in 11 years

How people and strangers came to my rescue time and time again:

Even through the pain and pure helplessness, while being in public battling the pain and uncontrollable vomiting, people graciously have helped me. I've had a manager leave work with me, get in a cab with me and take me to the train station. All the while as I vomited getting into the cab and while in the cab. Words can't describe how that made me feel, that I didn't have to do that alone. This particular horrible day, when I rode the train; the conductor helped walk me out the train, then stood outside the train while waiting for a couple to literally help me "walk" down the walkway to my mom and then return to the train for their next stop. My mom on the other end waiting to take me to the nearest hospital. 

On top of my wonderful family members, I've had countless co-workers, managers, friends, strangers, nurses etc. all help me during times of severe struggling. I am truly grateful for everyone that took moments to help me when I needed it the most and literally couldn't help myself.

 

Copyright iunderstandendometriosis.com 2019 

This website is intended as a resource/information site. All diagnoses must be given by a doctor. This website is not affiliated with, maintained, authorized, endorsed or sponsored by any of the mentioned websites, materials, doctors or any of its affiliates. This is an independent, unofficial site. All information contained on this site is unofficial and subject to update without notice.