Share Your Story: Aly


Aly was diagnosed when she was 15 years old.  Now 21, she shares her Journey with us, and she has been through so much.  She does, however, continue to fight and push ahead and raise awareness.  She’s an incredible woman.  And one hell of a Warrior.

Aly’s Journey: I have been a runner since I was four years old. It has always been my passion, but it was also where my pain began. In the spring of my junior year, I was running on the track as usual when I suddenly I fell to my hands and knees in severe pain. I vomited when I tried to get up. It was the beginning of a life-changing injury in which I would endure unbearable stomach pain that I still experience even though it has been 7 years since I was diagnosed.  At first, I tried to brush it off. Each race, I believed that I only needed to work through the pain and simply get to the finish line. I would continue running and then collapse at the finish. Oddly, it never occurred to me to stop running. Injuries are part of an athlete’s life.

At my first doctor’s visit, I was told that that the pain could stem from ovarian cysts that might be rupturing and causing extreme discomfort. I underwent a round of ultrasounds and MRIs, but each time the tests would come back perfect. They couldn’t find anything wrong with me. The doctors treated me with painkillers and, when the season was over, I did well for about a month.  But when I attended a Leadership Conference that summer, I had one of my worst attacks. I collapsed, cried and was once again in excruciating pain.

When I returned home, my gynecologist said I could have endometriosis, a condition where tissue that grows inside your uterus grows outside it. It can make it hard for women to have children. I was sixteen when they told me I probably would not be able to have children. At that age, you are just trying to live and not thinking about the future. I had to grow up fast. The doctor did not want to perform exploratory surgery because I was so young, so they began to treat me for it with birth control medication. Even so, my condition failed to improve, and my doctors began to think there might be a problem with my intestines.

After they ruled out Irritable Bowel Syndrome they began to wonder if my intestines had somehow become twisted. My third doctor, a gastroenterologist, ran more tests, but the results were the same: I was perfect.

At this point it would seem like it was a blessing that nothing was wrong, but it wasn’t.

I had been in inexplicable pain for months and no one was helping me. The gastroenterologist suggested a colonoscopy and said that even if my colon was fine he would still give me a trigger injection into the area where I usually felt the most intense pain. If I was pain free for 6 to 8 hours after, he said, then it was most likely a nerve entrapment. Of course, my colonoscopy was perfect. He gave me the injection and for eight hours I felt relief, but soon the pain returned, heightened to a new extreme.

After three weeks, my fourth doctor, a pain management/anesthesiologist, used an ultrasound and finally discovered the nerve entrapment that was causing the problem. He injected the exact spot, and, after seven long months, I finally felt relief. I had forgotten what a pain-free stomach felt like. However, this only helped for a little while.

About a month later, I was collapsing and in extreme pain again. I went back to my gynecologist and we decided to do a laparoscopy my junior year of high school. When they opened me up, I was covered with endometriosis. It had started spreading to different organs. The doctor put in an IUD, another form of birth control inside my uterus which was normal protocol for endometriosis. Having the endometriosis areas removed improved my pain but a year later I still had pain. I am on a high dosage of birth control and do not have periods, but it only helps the pain a little bit.

Though I still have pain, I continued to run. My dream has always been to follow in my father’s footsteps and run in college. I continued to push through the pain even though it got worse.

I ended up going back to the gastroenterologist because I was having a hard time eating, having regular bowel movements and the pain was severe again. I was diagnosed with Irritable Bowel Syndrome (IBS) with Chronic constipation. I am on medication for this, but it does not improve the situation. I didn’t let this stop me from fulfilling my dream. I worked through the pain and became a collegiate runner. I was so happy to have finally made it, but it was going to be a long difficult road ahead of me.

During my freshman year of college, I was doing better from the pain until mid-season when I started having extreme pain and noticed I was gaining a lot of weight. I understand the freshman fifteen, but this was different. I was running fifty miles a week but still gaining weight. I went to back to the gynecologist to find out that the IUD was causing me to gain weight and have ovarian cysts. I decided it was time to have the IUD removed. I had to be put under to have it removed because it was too painful to be awake. I also have never been able to use tampons, so the insertion process has always been unbearable. I thought I was weird because I couldn’t use tampons the way my friends could. I got the IUD removed right before my sophomore year of college and was back the on pill.

I was still having pain though. I kind of got used to always having pain that I hid it away, so no one could ever tell what I was going through daily. Every year before the season starts, we must get physicals done and my sports trainer pointed me in the direction of a pelvic floor dysfunction therapist. I had never heard of pelvic floor therapy, but I was willing to try anything. It was something new and it turned out that I was diagnosed with pelvic floor dysfunction which is the inability to control your pelvic muscles and the therapy seemed to help all my conditions.

Now I am at six different chronic illnesses and I couldn’t possibly think I could have anything else wrong until I noticed that I had a hard time releasing urine. In my junior year of college, I noticed I never had the urge to urinate and it was causing extreme pain and puffiness in my body. I was retaining urine but drinking around fifteen bottles of water a day. I went to see a urologist, who ran scans and urodynamic tests. The results showed that I had pelvic floor dysfunction which I already was treating. So, the urologist decided to put me under and do a cystoscopy with hydrodistention. She was looking for Interstitial Cystitis (IC). IC is s a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain around bladder lining. The procedure showed that I have IC and my bladder lining had tears in it.

After the procedure, I was doing the best that I have in six years. It felt good to only have mild pain. I had hope that things were getting better. I was prescribed Aloe Vera pills to help thicken my bladder lining.

But the pain returned, and no one knows how to help because there is not enough information out there.

I suffer from endometriosis, but I also have a nerve entrapment, ovarian cysts, pelvic floor dysfunction, chronic IBS with constipation, colon spasms, gastritis and interstitial cystitis.

I suffer from severe pain daily that hinders my way of living.

All my issues stem from endometriosis. It has changed how I live and makes it very hard to be an average twenty-one-year-old.

I, like so many other women, suffer from an illness that gets overlooked every day.

Even when they find out what is wrong, there are barely any ways to help.

Endometriosis is incurable, but I hope one day my story and all the other stories out there will bring awareness and the importance of trying to find a cure for endometriosis. As a designer, my goal is to spread awareness so that women voices can be heard so that we can find a real solution for our real pain. My journey is not over but I keep fighting so that one day my pain will be gone.


If you wish to contact Aly, you may email her here.

I want to send a special Thank You out to Aly for being brave enough to share her personal story, struggle, and victories with us today.  I am so grateful that you continue to fight and look forward to helping you with your project!    Thank you!!!



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.

Documentary: Stronger Than Endo

My good friend Exxes Hauffen owns Compass Media Productions. One day he asked me, “What’s all this uterus business about?” – regarding all of my Facebook posts. So, I told him about Endometriosis and his next question was, “How can I help?”

Thus the beginnings of “Stronger Than Endo.”

A few local San Diegan Endo Sisters volunteered to share their stories and struggles. Exxes focused more on the emotional and quality-of-life aspects of the illness, rather than the physical symptoms that we are already so aware of.

We also interviewed my gynecologist and Endometriosis excision surgeon, Dr. Mel Kurtulus, of San Diego Women’s Health.

What you watch today is the end result of months of hard work. I am honored by the voice Exxes has granted us.

Exxes, thank you for your endless hours of dedication, for the passion that burned so brightly within you during the interviews, your hunger for knowledge, and your undying desire to bring awareness to this disease.

To Dr. Kurtulus, thank you for dedicating an afternoon of your time to this project, for your endless compassion and drive to give each EndoSister a greater chance at normalcy, and for giving me my life back. Your passion is evident every time I see you. And your “approachableness” is one of my favorite qualities you possess. You’re incredible; not just as a physician, but as a human being.

To Heidi, Merritt, and Zeiddy, I will never be able to thank you Brave Warriors enough. Not only for opening up your hearts to the world but for your ongoing support and love you have for other EndoSisters, even while you endure your own Battles.

This is truly a labor of love. Exxes filmed, edited, and produced this documentary free of charge. Dr. Kurtulus was not compensated for his time. And neither were myself or the interviewed EndoSisters. We hope that you enjoy, embrace, and share this video.

Without further ado, I give you “Stronger Than Endo”:

The full interviews with each EndoSister and Dr. Kurtulus will be made available shortly and shared separately.

And Exxes isn’t done yet. He’d like to continue interviewing EndoSisters and sharing our Journeys.
A note:

The views and opinions expressed in this video are purely that: opinions. We understand that there are several theories as to the cause of Endometriosis, as well as the treatments. No one theory is correct. And we honor all opinions.

Share Your Story: Janis

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Janis was diagnosed with Endometriosis when she was 35.  Now 39, she shares her Journey with us:

Janis Oenbrink;  August 1, 2018

Endometriosis changes the lives of many, and in multiple ways.  Infertility, pain, fatigue, depression, and a multitude of other miserable symptoms encompass the disease of endometriosis.  I have dealt with this disease for years, and along the way, been diagnosed with Irritable Bowel Syndrome, anxiety, depression, ruptured cysts, etc.…. as well as been called crazy, lazy, and a hypochondriac.

Endometriosis is diagnosed during a laparoscopic surgery, and in my case, during my hysterectomy. Before that, I had 2 colonoscopies, one upper endoscopy and my gallbladder removed and hadn’t even considered endometriosis as an issue.  Little did I know, at that point, the symptoms I deal with are consistent with both GI issues and GYN issues. Since the hysterectomy in 2014, which removed all but one ovary and one fallopian tube I have had three endometriosis surgeries and in February 2018, removal of my remaining ovary and tube. I am 39 years old and surgically menopausal. I tried every birth control pill, hormone, pain medication, and home remedy possible. Through all this, I also consider myself extremely lucky because I have two beautiful and amazing daughters, and so many other endo sufferers are unable to have children. I know I am blessed beyond measure that my hysterectomy resulted in horrible reaction to a stitch and I ended up finding the surgeon who saved my life from misery. As strange as it sounds, I am grateful for the complication.   

While I wait to get my hormones under control, I pray that I don’t have to undergo another surgery for the pain. Although I no longer have ovaries, I am receiving estrogen replacement, and unfortunately, endometriosis is hormone dependent.

Dealing with endometriosis is different for everyone and is difficult to describe.  Endometriosis is not cured by hysterectomy; there is no cure. There is the ability to remove, or excise, the lesions, but there is no guarantee that it won’t come back, appear in a different place, or grow from microscopic lesions that were not completely removed. The amount of endometriosis does not determine the level of pain one experiences either. I have been blessed beyond measure to have a husband who has listened to me whine and cry, supported me through each surgery, and gives me hope, makes me laugh and loves me when I need it most.  Pain, adhesions, scarring, bloating, fatigue, and mood swings have put my life on hold some days, but more often than not; I have done my best to ignore the pain, to keep the miserable feelings to myself, and pretend that I am fine.

But, I am not fine. I am angry. I am bitter. I am resentful. I am jealous. And I am tired. Tired of living like this, making excuses and tired of being robbed of a normal lifestyle. I have spent too many hours clutching my heating pad, praying that the sensation of my organs being scraped out will disappear. I am tired of pretending. I am so tired of this that I am going to do something about it. I am a nurse and I will do everything in my power to spread awareness of this disease.  At this point in my life, my efforts revolve around being a wife and mother, FNP school, and attempting to find the right dose of hormones that will get me through this chapter in my life. It is difficult to wrap my head around the options, the side effects, and the effect hormones have on my future. Too many women suffer, are ignored, and stuck dealing with a lifestyle they do not choose. It is much more than the side effects of pain and bleeding mentioned in a TV ad. It is a life-changer.  One in ten women experience endometriosis, yet it is greatly under-researched and under-diagnosed. It is my goal and hope to raise awareness and become a voice that so many are praying for.

(Thank you, Janis, for reaching out and for being brave enough to share your story and thoughts in such a brutally honest way.  May you find the peace we all deserve.  And I applaud your raising awareness.)

If you would like to reach out to Janis, you may email her.

And she wants to remind us: Never, ever ignore your gut feeling that something is not right. You know your body best. Don’t let anyone make you feel bad about questioning your own health. Keep track of your symptoms, surgeries, successes and failures….be an active participant in your healthcare.


Share Your Story: Rose of Sharon

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“Rose of Sharon” was diagnosed when she was 26 years old.  Now 44, she comes to us (and you) for help.

Rose of Sharon’s Journey: For 19 years I suffered in silence ’cause no one took my condition seriously not even doctors! I feel as though I was cursed! Can’t keep a relationship, a job & a happy life. Endometriosis stole my entire life! I have never gotten pregnant. Sex was excruciating, the very thought of intimacy was terrifying! For 19 yrs I have endured & continue to endure pains that left me thinking of suicide! I have been told by doctors after six surgeries that I have to just manage this demon disease! From day one of my menstrual cycle, it has been hell. I just cannot live like this but I don’t know what to do or try again! I NEED help!

Words of Advice for Us:  I live on other EndoSisters strength & advice but I will say this it’s not hidden no more. Awareness is the key to this terrible & demonic disease!!!

The Last Word: Please help find a cure!

I want to send a special Thank You out to Rose of Sharon for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  May you find the help you seek.



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.

Share Your Story: Coby-Lea


Coby-Lea was recently diagnosed with Endometriosis at 22 years old.  Living in Northern Rivers, New South Wales, she wanted to share her story with others today.

Coby-Lea’s Journey: My story. Coby-Lea, 22 years old, diagnosed with endometriosis. Since I was 13, I’ve struggled with really extreme ‘period pain’ and abnormal cycles. They’d last for nearly 7 days! They’d be heavy. They’d sometimes have some tissue/clotty stuff. I was 13, I didn’t know what to do. Thankfully, my mum took me to the Dr who then put me on the pill to regulate my cycle and hopefully ease the pain. Fast forward 9 years, I cannot take the unbearable pain anymore. I know myself I am not exaggerating every time I say ‘this is the worst pain I’ve ever had!’. And so, this is where it all begins.
On the 27.6.18 I went for a hysteroscopy, D & C, laparoscopy & dye to finally receive a diagnosis to explain the bed ridden, knife stabbing, punching pain I’d been feeling in my abdomen, especially the past 6 months in particular. In the lead-up, one dr said to me ‘oh it must just be some bad period pain, I’ll give you a script for some pain relief’. Strange, I thought, considering I hadn’t had a regular period for 13 months, since having a miscarriage that broke me in many ways and again the doctor’s words pained me ‘it’s a good thing it was early’. I went for an ultrasound to make sure my miscarriage didn’t leave anything behind. I was told there was some tissue that would pass out. Wrong. I ended up with an infection in my Fallopian tubes, so I found out after my first visit to  emergency. Another 2 emergency visits and 3 doctors visits within a month finally led to an appointment with a gynaecologist. Hooray, I thought, some answers finally. With all my history and symptoms, the gynaecologist didn’t muck around. I was heading for surgery within a month. Thank goodness because the month leading up to surgery was one of the most painful months yet. It’s funny though because I’d tell people I’m in a lot of pain and not feeling well and they’d respond with ‘oh you look fine!’. One day at work I was in agony and nobody could tell. I soldiered on doing my job because living out of home requires me to work full-time and with no sick leave, I had to do what I had to do.
Surgery. I don’t remember much, just the anxious feeling I felt when being rolled into the theatre room to be knocked out. Lots of people. Bright lights. Cold. Fast forward to waking up in absolute agony, crying for relief. A few hours later I was home, unable to move. Exhausted. The next few days that followed were extremely painful, as the gas they pumped my stomach with released through the nerves in my shoulder. Now here I am, one week after surgery and just had my follow up gynaecologist appointment and stitches out. I was diagnosed with endometriosis. It was removed, but there are chances of it returning. How to get rid of it if it returns? Surgery, again.
Endometriosis. Wow. 22 years old, recovering from a surgery that removed endometriosis. I’m baffled. On average it takes 10 years to diagnose this. It’s gone, I repeat to myself. It’ll be ok. Be positive, it won’t come back. I have to skip my period for 3 months to help prevent it from returning, although there’s no real prevention. The word kept playing on my mind and how casual the gynaecologist was when telling me … ‘so we’ve removed endometriosis, here’s some photos from the surgery… now let’s remove those stitches’. Hold up, I thought. What is endometriosis exactly? How will this affect me? Will it come back? How did that tissue cause so much agony and pain? So many questions. I was handed a pamphlet to help understand. But yet, I still had no answers. Because there aren’t any.

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I always thought I’d keep my battle to myself, my partner and close family. Because it’s a personal issue, private. I didn’t want everyone’s sympathy, or anyone to feel sorry for me. Or for people to think I was seeking attention, I’m certainly not. But now, knowing that there’s so many others out there who think the same as me and hide their illness, I feel the need to speak out and reach out. You’re not alone. It’s ok to have bad days. Speaking out, asking for help and talking to others is not seeking attention, it’s seeking answers and support, like what am I dealing with? How many other women suffer? Why does someone with mild endo suffer more than someone with an extreme case? Why do some people feel pain and others don’t at all? What happens if it returns? Will I be one of the 3 in 10 women that will struggle to fall pregnant? What can I do about this?

Words of Advice for Us:  Don’t suffer in silence. Speak out, seek support & answers. You’re not alone xxx

The Last Word: Thank you! For providing a platform for endosisters to share

I want to send a special Thank You out to Coby-Lea for being brave enough to share her personal story, struggle, and victories with us today.  Welcome aboard the EndoTrain.  May you find the support of EndoSisters worldwide, as well as some answers and relief.  If you ever need anything, I’m right here.  You are a beautiful, brave, and strong woman.  Thank you!!!



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.

Share Your Story: Michelle

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Michelle from Virginia was diagnosed with Endometriosis when she was 36.  Now a year later, she shares her Endo story with us.

Michelle’s Journey:  Hi. My name is Michelle. I am sharing this story to help others with endometriosis. I have a very unique story.

In 2003 I came out of the military with a rare bone tumor called fibrous dysplasia. This was and still is in my pelvis. It’s something I went through many years and it took having my third son to put me in a state of barely walking, getting infusions, many rare surgeries at John Hopkins to get the help I needed to walk day-to-day.

In 2012 after having my third son I was having lower back pain and the pain seemed unbearable! Move forward to 2016 after both hip surgeries and pelvis surgeries I was having unbearable pain again and the Hopkins doctors were concerned it became malignant so I had a scan that showed ovarian cyst large enough concerning my pain, and after Christmas I was given an ultrasound and told I had two that seemed like chocolate cysts.

By February and March they did lower scopes since I was having bowel issues too. While that came out fine, I found a doctor that specialized in endometriosis and felt I had it. I knew the pelvis pain wasn’t from fibrous dysplasia and with that condition it made it hard to know exactly how much. I went ahead and scheduled surgery for hysterectomy and removal of cysts. So surgery was supposed to be 4-5 hours and it ended up being 9-10 hours. I had it mid-June. Apparently, I had one of the worst cases they have seen.

All my pre outpatient tests did not show the endometriosis on my intestine, rectum glued to my uterus and a more concerning part deep down in my uterus. I’m 2 weeks post op, stayed in hospital for three days. While I have stitches on my stomach, the inside lower is the concern of healing properly. Post op is up and down. Before surgery I was at gym 3 days a week so I have been walking each day but I still have a lot of pain. I feel like my endometriosis was over a scale I’d 10 always. Right now my lower back pain has since lowered significantly and while this not a cure I feel like this surgery for me really did benefit me. I did end up in hospital not even a week after due too breathing problems. Due too all the gas in stomach and upper. I had no issues passing gas and pooping but that was a goal I was determined to meet because I heard that is terrible. The upper gas was hard, and I had a breathing treatment for 10 days. I’m am 16 postop and sleeping is hard. I wake up with pain but in stomach and that sounds normal. My doctor is shocked if how much walking I’m doing but I feel like I’m slow and to be honest I didn’t start driving until a couple days ago and with three kids I don’t go far right now. Lifting is no joke. You have to have someone for 8 weeks to lift so your bottom doesn’t get messed from everything they did.

We have military, my school, and police department support and it has really helped. I have had many surgeries on pelvis for my dysplasia tumor but this one has been the hardest to experience and endure. Your body gets beat up and there is not physical therapy, only pelvis floor therapy which is something you do later on if you have rectum damage. I will have to go on a medication to help prevent more endometriosis. I only my ovaries left and that is bittersweet but I have also realized how lucky I am that I got three with endometriosis as the doctors are in disbelief and say I was blessed.

I think every case is unique and so a treatment has to be in the best interest for you. I hope this gives some insight on the treatment for it.

Words of Advice for Us:  Don’t lose hope. If you have a chronic pain seek medical attention and don’t be afraid of getting a second opinion.

The Last Word: I would say If you have chronic pain and it’s hard and challenging by nighttime don’t rely on pain meds find a solution but seeking a better treatment.

I want to send a special Thank You out to Michelle for being brave enough to share her personal story, struggle, and victories with us today.  As you say, “Don’t lose hope.”  You’re not alone in this battle.  You are a beautiful, brave, and strong woman.  Thank you!!!


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.

Share Your Story: Michelle


Michelle was diagnosed with Endometriosis when 20.  Now 35, and living in La Mesa, California, Michelle shares her Endo story with us.

Michelle’s Journey: My endo story I first got my period at 10 years old. I remember I was still in elementary school, playing in PE when I got my first one. From there, my periods became increasingly more and more painful.

By 15 years old I remember rolling around on the ground in the bathroom, sometimes in so much pain that it made me throw up. I would miss school sometimes but most of the time tried to tough it out. My periods were always at least 7 days long, super heavy and lots of huge clots. I thought that was normal…..I was taught to believe this was all normal.

Then around age 20, I woke up one night in the most excruciating pain, radiating from my pelvis. My first thought was that I was pregnant (because I was not on my period which was always very regular- in fact, I was two weeks away from it). I thought something was wrong. Maybe I was having an ectopic pregnancy? I took something like 20 pregnancy tests and all were negative. The pain continued randomly for about 4 or 5 days. Each episode would last a few minutes, had me doubled over in a fetal position and then would ease up almost like a wave coming in strong and then fading out. This would happen maybe 5-6 times a day and often in the middle of the night. After the first couple days of this, I went to the ER and was told I had cysts and to follow up with my OBGYN.

I went to see the OBGYN who ordered a transactional ultrasound… he immediately told me “I think you have endometriosis”. I had never heard of it at that time. It was 2003 and social media was not really a thing yet. The internet was barely a normal household thing…and no one I knew had it… or so I thought. I was told I had ovarian cysts and fibroids for sure but the only way to check for endo was to do surgery. He explained he may have to take an ovary or a tube depending on what the situation was when they did the surgery. This scared the shit out of me! I thought I would never be able to have kids.

I remember crying that whole day.

Scared about losing my fertility and wondering what they would find. At the time I was married and naturally, we wanted children. The doctor told me his staff would call me to schedule my laparoscopic exploratory surgery the next week and set it all up. A couple weeks passed and I heard nothing so I gave his office a call. The front desk staff told me that they were still waiting on his schedulers and I would be given a call soon. Another two weeks passed so I called again. Same thing…. this happened 3 or 4 times over the span of a couple months. In the meantime, I continued to have this excruciating pain come and go every month right around ovulation time.

The last time I called his office I was told that this doctor had left the practice and he had taken my medical records with him. I asked for his new information and the staff informed me he left and did not provide them with any info so they were unsure of where he went or how to reach him.

At this point, I felt defeated and angry. I asked if I could be seen by another doctor in the office and they agreed to make me an appt. By the time I could get an appointment I had lost my job and my benefits. I no longer had insurance and was unable to be seen.

Not only was I having painful, long, heavy periods, now I was experiencing excruciating episodes of pain during ovulation. At this point, I became obsessed with researching this disease and trying to find an answer as to what could help. Having no insurance and no job, relying on one income, my only choice was to seek help with planned parenthood. I knew they offered discounted rates or could get me approved for free services. The only options they could provide for me with their limited resources was testing out different birth control to see if it would help for the pain. I tried every birth control out there and nothing stopped my pain. Some made it worse and some made me feel crazy and depressed. One made me bleed for 90 days straight!

Of course eventually, I got another job and got insurance again! I saw a doctor immediately and they did an ultrasound right on the spot. The doctor agreed he thought I had endometriosis but was very reluctant to pursue surgery. He felt surgery should be a very last resort and instead decided to treat me with Lupron, a “chemotherapy” drug for prostate cancer that is often used on women with endometriosis to suppress the menstrual cycle and chemically induce menopause. I was willing to try anything so I agreed. I was given two rounds of this drug and was told this was the maximum recommended dosing. Any more would be too damaging to my body.

This drug was AMAZING! It completely stopped my pain! I had no more periods and no more pain since I was not ovulating either. However, I soon started to notice that like birth control, hormonal therapy came with its own side effects. I started losing hair, gaining weight, my teeth started deteriorating, my memory started getting really hazy and I felt like I could never think clearly, I also felt fatigued all the time.

After the two injections, which gave me relief for about 6-8 months, I began work at another job and did not have benefits any longer. Again I was with no insurance and no resources to help with this pain that disrupted my life. And now the pain was back.

So I began to learn to live with it. I would be up all night sometimes in pain, in and out of the bathtub… hot baths and heating pads were my only relief. Ibuprofen did absolutely nothing so I stopped trying that very early on. The constant pain left me with insomnia on the nights I would be struck with it. But for the rest of the month I was living a normal life! I was not going to let 4-5 days out of the month rule my life!

From this point on I spent years just dealing with the pain. I was addicted to my heating pad and eventually developed permanent burns on my pelvis and lower belly. I would use the heat pads on the highest setting and take the protective cover off because it just couldn’t get hot enough. Eventually, I just slept with it all the time on me. It was like my security blanket. I would find ways at work to hide during episodes of pain and just let the pain pass. Being that it only would happen a few times during the day and more frequently at night I was able to still get through my day. The worst part would be if I was driving. Many times I would have to pull over on the freeway during an attack to let the pain pass.

Eventually, after years passed of dealing with the pain, all the while starting a career in tattooing, traveling the world, getting divorced, Dj-ing regularly, doing art shows, hanging out with friends and living my life I decided enough was enough of dealing with this pain! I went back to planned parenthood and a doctor there suggested I try Depo-provera injections. She said I could use this for the recommended 5 years (due to increased health risks including osteoporosis) and see if it helped with the pain. She was convinced since Lupron relieved my pain that Depo would most likely help me as well. Depo provera was AMAZING! It completely stopped my menstrual cycle and I was pain-free for the first time in years! I was able to finally live my life freely without being bound and controlled by my pain. I continued to get the injections every 3 months for the next 6 years. All the while still unable to afford medical insurance, but luckily I had this magical drug.

Finally, in 2016 I got to a point in my career where I could afford to pay for private medical insurance and signed up right away. I immediately started googling OBGYN’s who specialized in endometriosis. I knew I wanted to have kids and knew it would most likely take a while if I ever did find the man of my dreams. I also knew I was a year overdue and was being urged by the doctor I was seeing at the local clinic to get off depo since it was only recommended for 5 years.

I started seeing my new doctor and told him of my history. He agreed I should stop depo and we could finally do my exploratory laparoscopic surgery to see what the situation was. I wanted to be proactive in my health and proactive in preserving my fertility. Especially since I was getting older (33 years old at the time). He scheduled my surgery and in May of 2016, I was laying on the table in a very scary all White sterile room at mercy hospital awaiting to be cut open. This was a very lonely and scary experience for me as I had no one close to me at the time to support or help me through this experience. No parents or even a boyfriend to help me with recovery or just for comfort. I had a couple friends visit while I was off work recovering but I spent the majority of the next couple weeks laying in bed alone in a lot of pain, unable to walk around and ordering a lot of food through grub hub since I was unable to do much for myself.

I was told post-op that they had found a small amount of endo between my uterus and my bowel and that most likely the depo injections were keeping the endo growth minimal. I was so happy to hear this. I felt relieved that it wasn’t worse and that I was considered only Stage I. After recovery my doctor put me on yet another birth control pill to keep any growth from increasing. I knew I wanted to get off birth control for good so a couple months later I stopped taking it. I still wasn’t getting a period and had no pain. I figured the depo was still in my system and had read it could take a year or so to completely detox from my system. I started looking into natural remedies at this time and in the meanwhile, I had met the man of my dreams! I didn’t know it at the time but I figured it out pretty quickly 🙂

Shortly after I looked into acupuncture and found Meredith Jones. She had endo herself so I thought she had to be able to help me and guide me on natural remedies and maybe acupuncture could help me balance my hormones naturally as well. I started seeing Meredith once a week. During this time I started taking supplements and some Chinese herbs she put together for me. I started changing my diet and eating an all organic diet. I also started switching more and more of my personal care products to natural/ non toxic. After 12 weeks of acupuncture and herbs my period finally returned and the endo pain returned upon “ovulation time” as well. The pain returned with a vengeance. It was more severe and more frequent than it ever was before. The pain was coming once an hour now and lasting 10-20 minutes.

I went back for acupuncture a couple more times over the next two weeks and in the mean time scheduled an appt with my OBGYN. I arrived in tears….His reaction seemed concerned but I felt more like he thought I was crazy. He ordered an ultrasound and they found cysts along with a uterine fibroid. After several Visits his recommendation was LUPRON. No thanks, I said. Been there, done that. At this point, I felt like I should seek out another specialist and found the endometriosis center of San Diego at UCSD. I saw another doctor there who urged me to “just get pregnant”. He looked at my ovaries on ultrasound and said they looked great and everything looked normal. He again encouraged me to get pregnant and this would solve all my problems.

At the end of the visit he suggested an anti inflammatory diet. Probably the only thing of value that came from the visit. After this, I stopped acupuncture as I didn’t feel like it was helping me personally and was searching for other ways to aid my body in healing. I started reading as much as I could and again became obsessed with learning all I could as to what could help me stop the pain while also preserving my fertility. I read day and night. I read medical studies, blogs, books, articles, anything I could get my hands on about endometriosis and healing the body naturally.

The next month the pain returned even worse than before. I was in pain for 14 days straight now starting at ovulation and ending just before my period came. Again I was in pain every hour for 10-20 minutes. The pain was stabbing, burning and muscle contraction pain. I could now feel the pain in my intestines on the left side, my bowel and my uterus. The pain radiated all over my pelvis and abdomen. I was on the ground, fetal position, can’t talk, can’t walk, can’t think kind of pain. I couldn’t sleep, eat or do anything. This was the most horrific pain I have ever experienced. At one point during this two weeks, I remember being in so much pain I could not move a muscle. I layed flat on the ground paralyzed in pain so bad that I couldn’t speak or move at all. The only thing my body could do was release tears from my eyes while I stared up at the ceiling praying for it to stop. At this moment I felt like someone had dropped a cinder block on my pelvis. The pain was electric and radiated through my whole body. I felt for the first time I was having an “out of body” experience. My husband (boyfriend at the time) hovered over me panicking and all I could do was lay there until it passed.

This began to become a pattern.

Every month.

14 days of constant excruciating pain all day and all night long.

It began to take a tole very quickly on me…Mentally, emotionally and physically. Naturally, I was unable to work and began missing over two weeks of work every month. I continued researching what I could do, trying to remain positive, yet honestly at some points feeling suicidal out of desperation to escape the pain. This kind of pain is traumatic, relentless and excruciating. Far worse than I ever thought was possible. This kind of pain I could only compare to being held hostage and tortured day in and out except nobody was doing this…my body was doing this to me. The worst part was not knowing when it would stop. These are the times that lead me to desperate thinking.

Enduring pain is one thing, but to endure constant, severe pain and not know if it will ever end is literally hell on earth.

I soon after started the AIP Paleo diet. This is a very strict version of the Paleo diet that eliminates all foods that could possibly cause inflammation. No sugar, caffeine, eggs, nightshade vegetables (tomatoes, potatoes, peppers, eggplant etc), no spices, no alcohol, no bread, gluten, soy, no dairy, no grains, nothing processed at all and everything completely organic. Basically paleo on steroids. I also began food sensitivity testing to see what foods might cause inflammation in my body and eliminated these as well. My already very limited diet was now even more limited. Every meal I ate I had to prepare myself. Or my amazing wonderful supportive husband would prepare for me when I was unable to do anything but lay on the ground in pain. This meant a life of no fun. I was in constant pain and was also avoiding any of life’s little rewards or treats. There was no longer anything I could do to add a little fun or happiness to my day. Everything was calculated out that could possibly cause any delays in my healing. It became an obsession. I switched all of my makeup, personal care, and cleaning products to non-toxic. I ripped off my fake nails, took off the eyelash extensions and went completely natural. I started taking even more supplements and ones that were specifically good for endo. I took supplements that were made to metabolize bad estrogens and help balance my hormones. I even drank teas to help detox my liver and cleanse my body. I got rid of all the plastic containers in the house, threw out all the Teflon pans, and started drinking alkaline water. At this point everything I put into my body was for a purpose and that was to heal myself.

I started using CBD, got a tens machine, started doing yoga, started meditating, anything I could do to help myself with the pain and heal myself. I was obsessed and motivated to cure myself. My pain continued month after month… after about 4 months of strict AIP, losing 30 pounds and completely changing my entire lifestyle I began to see a difference in my pain levels and frequency of pain. The pain was now only lasting 9-10 days a month and the severity of pain was decreasing. I was happy with the improvements but I was expecting more, was exhausted and frustrated. I was still suffering, still losing 9-10 days of sleep, still throwing up every month the day before the pain and “ovulation” hit and still feeling depressed, stressed and anxious. Losing that much sleep every month takes a mental toll on a person. Severe sleep deprivation had its own variety of side effects.

At this point, I began seeking out a naturopath and was recommended a homeopath doctor by a friend who said she was able to help her balance her hormones. I began seeing a woman named Andrea who helped me with further food testing, adjusted my diet slightly and ordered hormone panel tests for me. She also put me on a 6-week full body detox system. At that point I was taking 12 different supplements under her care, detox drops 3 times a day, drinking a detox water through out the day and doing food testing every 3-4 weeks at each visit. I was literally doing things all day every day to try to heal myself. That’s how desperate of a situation I was in.

After seeing Andrea for about 5 months she put me on some creams to help my hormones balance naturally based on my hormonal panel results. I also started seeing a pelvic floor physical therapist due to the “aftershock” of pain I had once all the pelvic contractions would stop. The endo pain would stop yet I started experiencing musculoskeletal pains due to how bad and how frequent the endo pain was. These constant contractions began to make my pelvic floor muscles weak and tight. It felt as though all my muscles in my thighs, butt, pelvis, and abdomen were failing. This was a new side kick of pain called SPD and pelvic pain. I decided to finally give in and see a pain management doctor after 9 months straight of this. It was a long process to get approved for pain meds but my husband and I agreed it was only going to be beneficial for my mental state to have some sort of physical pain relief while I tried to heal my body.

I procrastinated on this for so long, wanting to keep all chemicals or anything toxic out of my system to prevent any interruption in healing. I also knew the reality of the severity of my pain and that it would take very strong drugs to alleviate any pain. I had tried a morphine pill, which did nothing and a Percocet 30 mg and neither was able to give me relief prior. The pain management doctor took a while to figure out exactly how much pain I was in or maybe believe how much pain I was in, but eventually gave me something that was able to somewhat take the edge off. I still was in a lot of pain, still unable to sleep or do much but honestly it did make me a little less miserable. I had my husband keep tabs on my dosing and made sure he knew and was clear on what I was taking and when to ensure no misunderstandings happened during my use of the drugs.

About a year into this new life of pain and agony and about a month of using the creams I had got from my homeopath, I missed my period. I thought, great. Now my period is delayed and now I will have to adjust my already fucked up, minimal schedule at work since now ovulation and therefore pain would be delayed as well. After two days, and still having pelvic and SPD pain, I curiously took a pregnancy test. To my complete shock it said positive! I could not believe it. I told my husband and his mouth dropped open and we just looked at eachother in shock! We had both wanted to have kids, and it was part of the plan, but we gave up on the idea probably 3 months before this due to how much pain I was in and coming to the conclusion that It would probably never happen because of my battle with endo. The pelvic pain continued randomly through the next 10 weeks or so but eventually ceased.

I am now 32 weeks and have only experienced a few pains here and there reminiscent of endo pain. I am so grateful for this little miracle growing inside me. My little baby boy. I honestly thought I would never be a Mother, which was devastating to think about. I am also grateful every day that I am not dealing with the agonizing pain of endometriosis. That being said I fully intend on having a natural unmedicated childbirth for several reasons:

One, is to prevent any interventions that might lead me in the downward spiral towards a C- section. For me, having endometriosis, a C-section could pose an opportunity for more endometrial growth and adhesions due to more scar tissue. Which could lead to more pain and more problems in the future. Any further surgery is the last thing on my to due list.

Secondly, I want to go through the experience that many women have gone through before me. I believe there is a lot of fear surrounding childbirth and I don’t think it should be that way. I believe I can do it and it is on the life bucket list.

Third, I want to compare childbirth to the horrible pain and agony I have lived through with endometriosis. Childbirth at most usually lasts a couple of days. I have endured weeks of constant relentless pain and I know other women have too. Because of this, labor pain does not scare me. I have a very good feeling that labor will be a lot like the pain I was in before getting pregnant, but the only way to know for sure is to experience it myself. In this way, I would like to spread more awareness about how devastating this disease is and how serious it is.

In the past couple of years, I have heard of several women who have ended their lives to escape the pain of endometriosis. This is a tragedy and no one should have to go through what we go through. With more awareness, hopefully, a cure will be found. SOON!

My main driving force, my motivation and my courage have all come from my husband. If I didn’t have him supporting and encouraging me, I don’t know that I would have survived through all of this. He is the most important and valuable person in my life. He has witnessed me in the worst state and at my lowest points of life and has still stuck by my side with a smile on his face. I only hope all my endo sisters could have a partner like him.

This is not the end of my story. I can’t wait to share my experience of childbirth. My hope is my pain will magically disappear after pregnancy and never return. But either way, I will continue to spread awareness and be a voice for this disease.

Words of Advice for Us:  Never give up!!!

If you wish to contact Michelle, you may email her here.

I want to send a special Thank You out to Michelle. for being brave enough to share her personal story, struggle, and victories with us today.  What a harrowing journey, indeed!  Kudos to you for being strong enough, both mentally and physically, to endure what you have.  And thank God you have such an incredibly supportive husband!  Congratulations on your pregnancy! And we’re wishing you and your family all the best.  If you ever need anything, you know where to find me. You are a beautiful, brave, and strong woman.  Thank you!!!



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.

Share Your Story: MfrBeth



MfrBeth is a bit tough to type, so I’ll call her “Beth.”  Beth’s daughter started showing symptoms of Endometriosis when she was 12 and was diagnosed with Endo when she was 15 years old.  Now 16, Beth has questions pertaining to her daughter, and shares her journey today.

Beth’s Daughter’s Journey: My daughter started having what we now know as endo symptoms at age 12, not long after her periods started. We did hormone check to see if they were not in parameters and she went on natural hormones-estrofactors and progesterone cream. This helped for a while, but she always had to go to nurse office at school for Midol for 1-2 days of her period, would be nauseous and have a headache and cramping.

About a year later, the cramps were beyond tolerable and Midol wasn’t helping. Went to OBGYN and she said to take Ibuprofen 4 tablets (800mg). Worked for a couple months, then excruciating pain with periods.

Went to ER’s with them telling us to go to OBGYN. Made them do an ultrasound to check for cysts-clear of those at that visit. Continued to do natural hormone progesterone, but I took her off Estrofactors because I read the link of high estrogen to endo and figured it was making things worse. Helped only a little. Things continued to get worse and she would miss 1-3 days of school with every period. OBGYN wanted to do the pill. I was hesitant due to her having weight issues already. She also didn’t want to do the pill.

Finally, at age 15, we went to see my niece’s OBGYN because he was the one who finally helped her with her endo suffering. He took my daughter in for emergency surgery. The staff ridiculed him for doing endo surgery on a 15 year old! They found out we and he were right. He found a moderate amount of endo and removed it.

She felt awesome for almost 6 weeks when her first period started after the surgery. BAM! Right back into it all.

He put her on birth control. Did nothing. Depo Lupron shots in addition to birth control-no help, constant headache and periods continued. Depo Lupron alone and no help, periods continued. We read a researched what we could find. Went back 5 months later begging for a hysterectomy to at least stop from getting new lesions. My daughter also is the carrier of a muscle disease and didn’t want children. Dr. was still hesitant to remove uterus. Then I showed him pics of her brothers who have the muscle disease and he understood.

She had only the uterus removed and cysts taken off right ovary, all endo that had been removed 5 months earlier was back!!! This surgery helped some, but not enough. 4 months later we found Center for Endometriosis Care and had surgery again. Lots of endo, scar tissue and scarred appendix removed, R ovary removed had 10 cysts on it! She has felt much better since as far as abdominal endo. However, she ended up with a headache about 5 days after surgery and still has it 7/8 out of 10 every day (it has been just about 2 months).

She is wondering if she has endo in her lungs as well as her brain. Already been trying to get help from local neurologist and Center for Endometriosis Care but no one is helping yet again! She is only 16 and I am so worried about her mental state due to all this pain and problems. She is beginning to feel that no one is going to help her. This has been a 4 year journey already for such a young person 😦 Who should we go see? As in who is the expert for endo in these areas? Lung and brain?

To Beth from Lisa:


I want to send a special Thank You for sharing your daughter’s journey with us, and reaching out for help.  Unfortunately, Endometriosis of the lungs and brain are considered very rare.  If you haven’t already read my entries on them, please find the lungs here and the brain here.  I hope you can find some answers and direction there.  And, please be aware that it may not be Endometriosis, but other causes of her pain.  Finding the right physicians to talk to about her symptoms will be so helpful.  Please continue your search and advocacy for your daughter’s health. Your a good Mum.  I wish we could do more.




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.