Share Your Story: Melissa

Woman in hospital bed before surgery

At 27 years old, Melissa received her Endometriosis diagnosis. As a nurse, Endometriosis was briefly covered in her study curriculum, but she was still shocked and had so much to learn. Two years later, she is thriving with an educational blog about the disease and shares her story with us today:

Melissa’s JOURNEY:  

“I think you have endometriosis.” These words came from an initial visit with my new Ob-Gyn after seeking out some help with conceiving.

At that point my husband and I had been trying to conceive for over a year and had no luck. Something inside me always knew I would have trouble becoming a mom, but the reality of it had finally hit and I knew we needed to see someone about it . . . but I did not expect this.

Endometriosis. I had heard the word before. Mainly on commercials. There is the chance that it was reviewed during my Women’s Health course in Nursing School. But if it was, the topic was brief and I don’t remember it; proving that there is not enough emphasis on endometriosis education in healthcare programs. Going in for infertility issues, but coming out with education of endometriosis was mind blowing, to say the least. Even as my doctor was asking all of the questions about my HEAVY periods, mood swings, chronic pelvic pain, etc, I still didn’t think any of it was abnormal. Like so many other women, I was taught by family and healthcare professionals that my period pain was normal.

Of course, after that visit, I went home and started researching. I was met with disbelief. Fifteen years had gone by since my very first symptom (severely painful periods), and I was just now learning about this? How was it possible that I was a nurse who couldn’t even see what I might have? I went on to find out that endometriosis is not well understood by the general population and that only few specialists actually know how to surgically remove it. I felt so thankful that the first doctor I saw was a specialist. How incredible that I was lucky enough to only visit one doctor and have an answer, while so many women go through several doctors before finding an answer.

So, I went through with the surgical treatment plan my doctor talked to me about and scheduled surgery for November 8, 2017. After that, I stopped doing research. There was no need, I had my answer and my doctor was going to fix my pain and help my infertility problem. Right? I was poorly mistaken.

Although the surgery did help confirm that I have endometriosis, it made my symptoms almost 10 times worse! Over the course of 2018, I went from being able to hold a full-time job with the usual painful period symptoms that I just pushed through during my cycle, to not being able to function multiple times throughout the month. I had to go part-time and called in frequently. I almost lost my job. My pain was no longer “just” during my period and it was no longer “just” mood swings, painful cramping, and occasional dizziness. My pain was now affecting every organ system in my body.

So, being the researcher that I am, I started looking for answers (because my doctor wasn’t really giving them to me). Low and behold, I found out that my surgeon was not a true endometriosis specialist. My surgery was not the gold standard in treatment. And my surgery was likely the cause of my downward spiral in health status. First off, I was mad at myself for not doing more research from the beginning. I was mad at myself for believing my doctor, something that I never thought that I would have to question. I mean, don’t get me wrong, I have been questioning the orders of doctors since day one as a nurse. It’s literally my job to critically think and question a doctor when they give me an order that might harm the patient . . . even if the doctor is an arrogant butt. So why didn’t I do that for myself? Was it because they had the word specialist behind their title? Honestly, I am not sure, but since the day I realized my situation was the result of misinformation, I made it my mission to share my story and help others advocate for themselves.

Today, I am sitting at home recovering from my second, and hopefully final surgery. I had laparoscopic excision with a doctor that is listed on Nancy’s Nook Facebook Education Page. But even so, I still vetted him myself with every question in the book. I fought my insurance to cover it with out-of-network benefits (at the minimum). And I won. Basically, I did my research and stood up for myself and the best possible care. Today, I am 4 weeks post-op, exactly. I am in pain, but excision recovery is long and hard. However, I can honestly tell that my chronic symptoms have been addressed. Of course, only time will tell, but I have faith in my recovery and the surgical skills of my expert excision specialist.

WORDS OF ADVICE:  

My best advice to those of you on your journey to pain relief and symptom control (since there is no cure), is to do your research! Stand up for yourself. Don’t let a doctor diminish your symptoms or make you believe that it is all in your head. And be ready to fight your insurance when you do finally get to your excision specialist. The journey is hard, but I promise you, it is worth it. Because at the end of the day, you can go to sleep knowing that you did everything you could to get the best possible care available.

The Last Word:

For those endo warriors who do not have access to the excision surgery, do not lose hope. There is still so much you can do to help your symptoms. Western Medicine is not the only answer to endometriosis. In fact, most of the relief I felt before surgery, was from dietary and lifestyle changes. Pelvic floor physical therapy is great start as well. At the end of the day, education and research are still key!

If you’d like to reach out to Melissa, you can email her or follow her blog.

I want to send a special Thank You out to Melissa for being brave enough to share her personal story. You and I had surgery right around the same time this year and I hope your recovery continues to go smoothly and that you remain symptom-free. Thank you for all that you do for the Endometriosis community. And for sharing your story and some incredible words of wisdom!!!

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And if YOU would like to share your story, you can do so.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: Chenille

Woman in yellow shirt and sunglasses

Diagnosed at 32 years old, Chenille shares her Endometriosis journey with us today, four years later. She’s had a total of seven surgeries for Endometriosis, including a hysterectomy and recurrent Endometriosis. And she has recently started seeing an immunologist. Hopefully this new course of treatment leads to long-lasting relief! Chenilles is sharing her story in the hopes that she can talk to others that have seen a similar journey of aggressive recurrent endometriosis.

Chenille’s JOURNEY:  

I have had a long, long journey that seems like it will never come to an end. When I was first diagnosed with stage 4 endo I was experiencing very painful, heavy menstrual cycles. Within 2 years and after 2 surgeries I had a complete hysterectomy.

I thought my battle was over. Boy was I wrong.

Not only did the endo return but it came with a vengeance. I had 4 surgeries in one year to excise it from my body. My surgeon even removed as many lymph nodes from my pelvis as he could thinking it could be embedded in them. It didn’t help.

I went to see a pain management doctor at the request of a surgeon who performed one of my surgeries in Boston. I did and was also diagnosed with Small Fiber Neuropathy. I tried numerous medications, none of which worked and only made me sick. I did 1 month of lidocaine infusions which only helped my developing nerve pain and not the relentless pain in my pelvis. I am not taking any hormone replacement therapy, but I do take 5mg of Letrozole daily. I have been on it for almost seven months.

I just had my 7th surgery in November of 2019. Unfortunately the surgeon who has done most of my surgeries relocated to California so I had to fly out there because no one locally would help me.

After my last surgery I had 2 wonderful months of no pelvic pain. But just like always it started to come back and I am in the same painful boat again. I am taking medical marijuana now, however it does minimal for my pelvic pain. It does great for my increasing nerve pain. I do not want to be on a narcotic pain killer. That is my last option.

So where does that leave me? I am at a loss. I do not know where to turn.

My surgeon believes that for what ever reason my tissue lining in my pelvis and where my reproductive organs used to be is just spontaneously growing the endo. He says my case is very difficult and rare. But that leaves me still in pain and not knowing where to turn. I tried reaching out to an Oncologist but he wouldn’t see me because I don’t have cancer. I would not normally post this much personal info but I need help.

I want to know if there are other cases like me and if so what they did, or who helped them. I am willing to do radical treatments in the hopes of leading a normal life. I just can’t keep having surgery forever. I am only 36 years old. I have a wonderful husband who is beyond supportive but this has affected our relationship too. My 3 young kids don’t understand why mom never feels good. I can’t run and play with them like I want to, I hurt too bad.

I hope that by sharing this someone will help, in any capacity.

WORDS OF ADVICE:  

You As hard as it is to do, stay in the fight.

If you’d like to reach out to Chenille, you can email her.

I want to send a special Thank You out to Chenille for being brave enough to share her personal story. May you find the advice and help you so desperately deserve. ❤ I’ll send ya a personal email with my thoughts.

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And if YOU would like to share your story, you can do so.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: N.

A quote that reads I was happy that finally I have my answers, but I was lost

Living in Germany, N. (who shall remain anonymous) shares her Endo journey with the world today to try to help others feel not alone as well as normalize the symptoms. She was diagnosed when she was 23 years old and shares her story with us four years later.

N.’s Journey:  

Hi, I’m from India. I started having painful cramps when I was 18 years old. It was so painful that I had to take pain killers. Then after few years, I used to get cramps before and after periods too. I used to have irritable bowel syndrome during periods too.

My father used to tell me to go to a gynaecologist but I used to think that it’s “normal”. I tried all kinds of home remedies but nothing worked. Every month, the pain was increasing. I was so done with all this that I told my mom that “I need to go to a gynaecologist, I need answers. It might be normal but I need this to be told by a gyanecologist”. My mother was still skeptical about going to a gynaecologist because she felt that they might give unnecessary hormonal medications.

Anyway, I was lucky that my first gynaecologist suspected endometriosis and told me to get ultrasound done and then she confirmed it. I was happy that finally I have my answers but I was lost. Later, I took dienogest for 1 year and then for 4 months I took Lupron injections. There was very less reduction in the size of cysts. My gyne told that I need to get my laparoscopy done which will happen in next 6 months.

In India, this is something which no one talks about and I wanted to normalize it and hence started this account.

Words of Advice:  

My only advice would be that stay strong and be positive. You’re more than endometriosis !!

I want to send a special Thank You out to N.for being brave enough to share her personal story, struggle, and victories with us today. And all of us wish you the best of luck with your upcoming surgery! Please keep us posted on the results and your recovery.

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And if YOU would like to share your story, you can do so.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: Heather

Heahter’s biggest support through all of this: her husband

Heather was diagnosed when she was 24 years old. Now 41, she shares her Journey and what steps she’s taken to spread awareness about this disease.

Heather’s Journey:  My name is Heather Marie Kobza. I was diagnosed with Endometriosis at the age of 24. I’m 41 years old and live in Kentucky with my husband and two chihuahuas.

I’ve suffered with Endometriosis half of my life. I’ve had 5 surgeries and all were unsuccessful. I did 2 Lupron injections 8 years ago for the Endometriosis in my bowels. After the Lupron treatments my stomach completely stopped emptying and I now have a gastric pacemaker. I’m 1 in 4,000 people in the United States with a gastric pacemaker.

After being in an abusive marriage of over 11 years I also suffer with PTSD severe anxiety. It’s been a rough road to travel but I have my supportive husband, wonderful parents and Endometriosis Sisters to help brighten my day. I started modeling at the age of 36. I’ve been in two tv commercials and am a published model. I’m also part of Models With A Cause representing women with chronic illnesses.
I started Heather’s Hope Endo Strong by myself 4 years ago. I do post on chronic illnesses and mental illnesses. Being an advocate has helped me meet other Endometriosis sisters and help raise awareness all over the world.

If you would like to reach out to Heather, please feel free to do so via Facebook.

I want to send a special Thank You out to Heather for being brave enough to share her personal story, struggle, and victories with us today. 

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And if YOU would like to share your story, you can do so.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: MariaElisa

Woman standing in underwear with baby's breath taped along her surgery scars

MariaElisa am was diagnosed with Endometriosis this year at the age of 25 after a 10-year struggle for answers.

MariaElisa’s Journey:  I got my first 10cm cyst at age 12, delayed removing it because I was “too young”. Once they decided to do emergency laparoscopy it ruptured and had a torsion which damaged my right ovary and Fallopian tube.

Got my first period at 14, all seemed normal until I turned 16. Severe, heavy painful periods. They started to become more irregular and i was left in debilitating pain on my legs and lower back. Doctor after doctor kept telling me being a girl with these pains isn’t anything to be worried about because my sonograms and paps were “normal” except my enlarged left ovary which I’ve known about for years.

But no obgyn ever realized how painful all these procedures left me on my insides, until one day I came across a few pages of girls who lived near me and I got referred to a specialist who knew what he was talking about and does excision.

He was the first to ever tell me how inflamed and aggravated my pelvis was and saw how painful it was when he did the exam. A month later after 10 long years I had surgery to confirm I wasn’t crazy or seeking attention! I lost a lot of friendships and relationships along the way because I was simply being a “flake” of constantly having pain. I still manage to work two jobs and live a semi normal life and try to distract my pain as best as I can!

My inbox is always open for others who feel alone !

Words of Advice:   Never ever give up on searching for answers ! We all know our bodies and when something is wrong!

The Last Word: Advocate until you find accurate answers from well known physicians ! Excision is standard care not ablation! When you’re offered drugs such as orilissa or Lupron please do research to make sure you know every detail and side effects and whether or not it’ll be good for your body!

If you would like to email MariaElisa, please feel free to do so.

I want to send a special Thank You out to MariaElisa for being brave enough to share her personal story, struggle, and victories with us today. 

I am so sorry it took me so long to share your post… and I hope you’re doing well!

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And if YOU would like to share your story, you can do so.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: Ashlea

Living in Manchester, Ashlea was 21 when she was diagnosed with Endometriosis.  Today she’s 29 years old and shares her Journey with us.  

Ashlea’s Journey: I wish there was a cure out there. It effects lives, effects careers, effects relationships…

The awareness needs to be made so other people wouldn’t have to go through what I have at the age of 29.

I have had 10 surgeries, numerous pills & medications injections, I have had a complete hysterectomy at age 25, I was told I would never be able to have children. However, I’m so lucky I got my miracle baby at age 22.

And just recently Feb. of last year I had laparotomy and left salpingo oophprectomy, because the small percent chance after my hysterectomy of the endo coming back was me I got it back I went through all that for nothing.

I am now in early menopause I am age 29 this a horrible illness has took over my life and career. I have to deal with this emotionally and physically all because off endometriosis. Since all these surgeries my bones are all weaker my muscles are weaker I have back problems bone problems, for such a young age this horrible disease as affected my everything I wish everyone had the knowledge and facts of this horrible disease we need this out there it’s effecting to many women I wish there was also a cure that could change life’s before it changes you. happy to share my story and endo journey.

Keep in there, we are strong we can do this! We will all support eachother you need good people around you! And just because this horrible disease can’t be seen doesn’t mean your being mard or hard on yourself we need a cure we need the help

Words of Advice:  Keep in there, we are strong we can do this! We will all support eachother you need good people around you! And just because this horrible disease can’t be seen doesn’t mean your being mard or hard on yourself we need a cure we need the help

If you wish to contact Ashlea, you can email her.  

I want to send a special Thank You out to Ashlea for being brave enough to share her story!

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Stronger Than Endo : Merritt, An Endo Warrior Interview

Words that read Stronger Than Endo

Over a year ago, you may remember we shared a sneak peek of a project we were involved in: Stronger than Endo. We interviewed a few women with Endometriosis, as well as my excision surgeon.

Well, my friend Exxes has completed and released the first of the three full-length videos. This one is an interview with my beautiful friend, Merritt.

It’s about 50 minutes of her Journey with Endometriosis. Her spouse, Jess, pops on and offers the perspective of a partner with endo. It was a long, rough, but beautiful morning for all of us, including Exxes. We also discussed what we, as individuals and a community, can do to help others. Raise awareness. Be there for one another. And don’t be afraid to share your story with others.

Thank you Merritt, Jess, and Exxes, for making yourselves available, vulnerable, and for allowing this to happen. I love you guys.

Here’s the video! For some reason, it starts close to the 2-minute mark; you may want to rewind it a bit when you watch it. Enjoy and share!

And, please stay tuned. As soon as they’re available, we’ll be releasing the videos of another EndoWarrior, Heidi, and my surgeon, Dr. Mel Kurtulus.

Share Your Story: Jenny12

quote that reads I have always had heavy, painful periods since age 9.

“Jenny12” is a 39-year-old woman living in New York. Officially diagnosed with Endometriosis five years ago, she shares her journey with us today.

Jenny12’s Journey:

I have always had heavy, painful periods since age 9. After many OBGYN’s trying different B.C. I finally had my first lap surgery 5 years ago, and was told stage IV with some adhesions on bowels that were unable to be excised. Did not really help with the pain with my periods, so I was then given Mirena, that was a huge mistake.

As a result the Mirena embedded in the wall, and once removed, I bled for 2 months straight, and a walnut sized tumor grew. I then had an ablation done (Sept 2017) to remove the tumor to try and control the bleeding. I was okay for about 1 month, and the tumor started to grow back. I then had a full hysterectomy (May 2018).

I was okay for about 5 months, and then the pain in stomach (so horrible) I went for a endoscopy, and the Gastro Dr. believes I have endo on the duodenum, as there was tons of food at the bottom of my stomach after a 20 hour fast, so slow digestions when the endo is inflamed in that area.

I am also having pain at 3 of the port sights where during the hysterectomy instruments were used, and I am being told by the OBGYN they believe this pain and swelling is because I have endo in the scar tissue, and the only fix is surgery to remove the scar tissue at the sites, and there is no guarantee that I will not have more endo in the new incisions?

I now have to track the pain, so I know when the cycle is, and account for a soft food diet, easily digestible when it comes, as to minimize the pain. And as for the incision pain, I have been told to try PT for abdominal stretching, and pelvic floor exercises before scheduling more surgery. NEVER ENDS. I have not been able to find any info. on endo on the duodenum? Thanks.

If you would like to reach out to Jenny12, send her an email!

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I want to send a special Thank You out to Jenny12 for being brave enough to share her personal story, struggle, and journey with us today. I’ll be doing some research for Endo no the duodenum and keep you posted! And we’re all hoping you’re able to find further answers and relief!

Memo that reads "Tell your story"

And if YOU would like to share your story, please submit it to me.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: BMW

photos of Endosister, BMW

BMW has asked that I share her Endometriosis journey with you today. She was diagnosed when she was 13 years old and is now 32. We live in the same area, so I look forward to getting to know her better!

BMW’s JOURNEY: 

Where to begin… As I lay curled up in the fetal position holding my stomach with one hand typing with the other. I find myself just wanting to talk to someone anyone… Wait no not anyone someone who understands. I’m in pain.

And not take a ibuprofen and lay down pain. But mental and physical anguish.

I deserve an Oscar, an Emmy, shoot I’ll take a Tony. Every last one of us who fake it. No not sex but like we deserve a kindness award for not breaking balls when it comes to that. But fake being fine. Fake that smile of “I’m fine” when in reality we are not. Hollywood has nothing on us!!

I was diagnosed with this unwanted guest at 13. My father died a year before from cancer. Before I was diagnosed I was in and out of the hospital. My mother was told numerous times that my pain was in my head. I was lucky though my mother had suffered the same pain prior to having me. She fought for me! She didn’t care how many doctors said it was nothing she knew it was real. I on the other hand began to think I was crazy. I mean they are doctors they know stuff. I was 13 what else was I suppose to think. My first surgery was at 14. I was on my period and in pain but they did the procedure. They found the pot of gold or pot of never ending poop,  depends on who you ask.

Even after being diagnosed I was informed that I didn’t look or act sick. When I heard this I always wondered what does Endo sick look like? My Dad worked with last stage cancer. We didn’t find out until it had spread everywhere almost. He didn’t “act” sick. But I was told if I wanted doctors to believe me I had to look the part.

I had one issue: how do you look like you want to rip your own insides out. I did end up acting though I began to act “fine” I thought if I could pretend hard enough the pain would stop. Or at least everyone but my mother would stop looking at me like I was a drama queen when I said I hurt. I was put on birth control at 14. It gave me menopause symptoms. Night sweats, heat flashes, you name it I had it. So they changed my meds to the birth control shot. And boom no more periods. But now I was depressed and scared because I was still in pain. So they gave me two types of antidepressants. Which gave me suicidal thoughts and ended up with me being locked up for about two weeks in a mental ward. So in roughly two years I lost my dad, I lost my mind, and I lost myself. I began letting Endo control me.

At 15 I had my second surgery because I was still having pain. The doctor informed me and my mother that the Endo had spread “everywhere”?!? I was not sure what that meant. He showed us photos pointing out red dots and saying that it was endometriosis. My pain was cause by a dot was all I could think. He informed us that there was nothing he could do. He put me back on the shot. He did mention the pregnancy might help with the pain. Yep he told a 15 year old girl that having a baby might help. Needless to say my mom was quite pissed. He smoothed it over by informing her that I most likely would never be able to have kids.

I was sitting right there.

He said it so casual, I cried when I got home my mom reassured me that 1.That the doctor was an ass. 2. Nothing is written in stone. I, in return, pretended to be fine.

Endometriosis had just shoved me in the locker and dared me to tell someone. By sixteen I was mentally drained I had two laps, many different meds I put on antidepressants and topamax. And I started dating. I wanted to be normal and I was for the most part. At 16 I honed faking it. I became a flake because I didn’t want to tell anyone I was in to much pain to go out. I sucked it up and pretended if my boyfriend so me in pain I played it off. Because “No guy wants a sick girl” yep someone told teen me that. I felt so small I didn’t want to be sick. I wanted to be okay, I wanted to do what my friends did and not pop ibuprofen like candy to attempt to get through a day.

But I wasn’t okay but again I pretended. Endo was pushing me around and I was letting it. I stayed on the shot for seven years. After getting off I didn’t have my a period til two years after I stopped the shot. Then bang the pain increased. So they gave me the ring. I was 23 Great I thought I just have to keep one up there at all times.

I got married at 23 and moved cross country my husband is in the military. Still pretending I was fine. I stopped telling doctors I was in pain. One told me I had to have a period to clean myself out. (Yea, sounds real stupid right?) So I believed him I did it and by the third month I couldn’t get out of bed. I was alone in Washington State I knew nobody. My husband was on deployment. I was in so much pain I had to crawl to the bathroom I couldn’t make it to the kitchen at all .I was pretty sure I was dying or an alien was gonna jump from my stomach. By day four of only eating crackers that I had in my room and drinking water from the faucet in the tub because I couldn’t stand at the bathroom sink. The alien jumping out of my stomach started to sound good. I was terrified but I never said a word not to my husband in emails. Not to my mom in phone calls not even to my friends in phone calls. I would tell them I didn’t feel “well”. I acted as if the pain hadn’t changed.

When I did inform a female doctor of the horror I had gone through, she assured me it was normal sometimes females have”bad” periods. I tried to explain but swallowed my voice maybe I was overreacting. Endo had taken my voice again. Maybe it wasn’t “that bad”.

Looking back I could slap me! It was bad; it hurt inside and out. But I remained silent.

I got a new doctor who told after I explained to him my pain that I only needed to have a period to have a kid. And since I wasn’t trying to at 24. I could keep the ring in. So I did and life went on and so did I. I worked and cried in the bathroom when the pain got bad. I pushed through I had to I wasn’t gonna be weak.

Who wants a sick wife, friend, co-worker, employee. Nobody.

So I still let the pain bully me into silence. At 30 me and my husband decided to try for a baby. I removed my ring. And all hell broke loose! From period anxiety to bleeding bellybuttons. My symptoms are worse. And it’s scary doctors still don’t listen.

But I’m not going to be quiet anymore.

I lapse into faking it from time to time. But in all honesty I’m tired of being in pain. I’m tired of remaining silent because people might look at me strange. The hell with them!

I spent the majority of this illness blaming me. Hiding scared and alone. Not because I was actually alone but because I was ashamed of being in pain. Ashamed of being scared and looked at as weak or not good enough. Or seen as over dramatic. I will be damned if my nieces or God willing my daughter goes through what I went through. Nope!!!

Somebody is going to listen to me.

Words of Advice:

Don’t remain silent! Don’t let anyone make you feel crazy or less than because your in pain. You are more than your pain if you wanna cry. Then cry, scream , yell. Just don’t let the bully win.

If you would like to reach out to BMW, you can email her directly.

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I want to send a special Thank You out to BMW for being brave enough to share her personal story, struggle, and strength with us today.  We are so glad you will no longer remain silent!!!

Memo that reads "Tell your story"

And if YOU would like to share your story, please submit it to me.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.