Share Your Story: Sarah

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New to San Diego, Sarah was diagnosed with Endometriosis when she was 38 years old, after seeking help for over 20 years.  Today, a year later, she shares her long and difficult Journey with us.

Sarah’s Journey:  I’m home from this year’s Endo March. I met some lovely people, reconnected with new friends (I’m new to San Diego), and learned a lot. One of those lessons was hard. It’s not as simple as saying Endometriosis changed my life or changed me.

It’s that it, along with other health problems, shaped me and, as all of this runs its course, my identity is changing. Parts of what I value about myself have shifted and this time the change is so deep that it may be irrevocable. I don’t know if I can get those pieces of me back. I used to be strong. I used to be fast. I could paint a painting in a day, code a website so that your head spun, learn a skill and build a 16 hour class around it and teach it inside a week.

When I was a kid, I was the *fasted* kid in the fourth grade. I outran everyone regardless of their height, gender, or age in the fourth grade. And I worked on my grandparents’ farm in the summers. I lifted hay bales. I carried things bigger than me! I was strong. I was fast. And then my body started changing. My weight shifted. My period started.

When I was 15 the pain of it became unbearable, I thought at the time. It lasted 8 days and it was heavy for most of them. I would throw up or pass out sometimes because of my period. I was anemic. I came home from school frequently because of my period. My mother was irritated and didn’t think it was real. And don’t get upset with my mother!

It turns out she had Endo, too. She didn’t get diagnosed until she was in her 50s. So, it’s no wonder she looked at my suffering and thought it was normal–it’s what she was told about her own suffering. And she’d never heard of Endometriosis.

Something else that happened when I was 15 was that I managed to subluxate some of my ribs and score a compression fracture in one of my thoracic vertebrae. The simple action of getting dressed for school is what made this happen.  So, in addition to period pain, there was constant pain in my upper back–constant and chronic as in every single day, every single minute, there was pain. The doctor my mother took me to accused me of trying to get out of gym class and didn’t even order an X-ray. I found out about the bone damage 9 years later when I was getting X-rayed for something else.

This set the stage for doctors not believing me about any of the pain I was in.

It also kept me exercising no matter how bad the pain got because I was told that exercising would make my “imaginary” pain better. I took myself to a gynecologist because that was my only option. Thanks, Planned Parenthood, for being a thing. They didn’t diagnose endo. To be fair, no one diagnosed it or considered it for another 23 years anyway. So, I still only have love for them. At least they listened.

I first learned about Endometriosis from a high school friend who had been diagnosed. Her suffering was worse than mine, so I never considered that I could have it. I assumed I was being given accurate information and that my pain tolerance must just be low. I kept my head down, took ibuprofen everyday for my back and more for my period, and kept on not getting any better. I took ibuprofen every day for about a decade. I took lots of ibuprofen. Every day. It didn’t stop the pain but made it manageable, tolerable.

I also started taking birth control pills at some point. Some brands helped with my period pain, some made it worse. All of them had side effects that kept me switching or stopping altogether. Benefit to detriment ratios became nearly daily contemplations. At some point, I decided The Pill wasn’t worth it. Pain was a better option.

I’m pretty sure that decision came after I ended up in a neck brace/soft cervical collar from a little traffic accident followed by carrying something bigger than me incorrectly. I couldn’t get my doctor to believe how much pain I was in then, either. So, I took so many ibuprofen than I pooped blood for a few days. When I told my doctor that, she finally sent me for physical therapy, an MRI, and to a neurologist. Needless to say, that was the end of my love affair with ibuprofen. I can take other NSAIDs, but, even now, over a decade later, ibuprofen creates horrible abdominal pain and blood where there shouldn’t be any.

So what about those cramps? Aspirin was my first solution. It thinned out the clots, so that was a relief. It didn’t do nearly as much for the pain. I got really good at controlled breathing and pretending. And I had to pretend. About this time, I had to change jobs due to carpal tunnel and thoracic outlet syndrome. I couldn’t do my lame desk job. I couldn’t paint. I even had trouble cooking for myself. (I will be forever grateful to the Mexican restaurant down the street from me at the time and their mostly-healthy, affordable tacos.)

I started teaching. The classes were intermittent and the pay was good, which allowed me time to recover in between teaching stints. I didn’t always manage to schedule classes around my period, but I tried. Working from bed on the worst days is a luxury most of us don’t have. It’s a luxury I sometimes had. Eventually, my arms and hands improved so I could re-learn all my painting skills, but my period never got better. It was always something I dreaded. And still, no gynecologist gave the pain a second thought. Eventually, I stopped talking about it. I pretended.

Just like I pretended in front of my students. Most days I was behind a computer screen. Some days I was also behind them. So I could keep my voice level–or even happy–while I hunched over, massaged, turned green. And in a decade of teaching, very few students noticed enough to say anything or react. Every now and then someone would mention something about my voice not matching or seeming like I was acting. It’s true. I was acting. I was pretending to be okay. And once, a male student turned around to look at me while I talked…. He did the whole Warner Bros. cartoon shock face reaction and turned back around again. I kept on talking, joking, whatever. Even though my back hurt, my arms and shoulders hurt, my period was Hell on Earth, it was all fine as long as I could still go dancing and still go walking.

My health sometimes kept me away from dancing for months or more at a time, but I always got back to it. I performed a little, even. I spun fire. I belly danced. I even got to perform on the main stage at Rakkasah a couple times. It was a luscious and frivolous hobby, and it got me out of bed. Over and over again, dancing was the reason I got out of bed, left the house. There might be weeks at a time that I didn’t teach–that I didn’t *have* to leave the house. Dancing got me out. Going for walks got me out. And then I fell down hiking. With 3.5 miles to go and the sun waning, I messed up my left leg. No one believed how bad that was either. So I did the best I could. I limped for a couple years. No biggie. I went for shorter and shorter walks. I still danced as best I could. Then I twisted my sacrum. Finally, by lying about what happened, I convinced a doctor to get me into physical therapy. I limped less.

And my period ever so subtly kept getting worse. I had these horrible things called Essure coils put into my fallopian tubes as a form of permanent birth control. I’d given up on The Pill and the risk of pregnancy wasn’t something I wanted to continue facing. Sex became an experiment in torture after that. Any deep thrust was like a knife inside my gut. And my period, yup, kept getting worse. And slowly, I started to bleed in between periods a bit and have discolored discharge.

In November of 2015, I had a period every week. It wasn’t constant blood, just one massive clot every Wednesday. Seriously. Every. Wednesday. So I made an appointment with a doctor to talk about that and an increase in my lower back pain and the leg pain that just wouldn’t go away and about blah blah blah medical history. She was not amused. She was not terribly helpful. She also didn’t really believe me about the pain–except for my period/pelvic pain. She referred me to a specific gynecologist, for an intra-vaginal ultrasound, and for physical therapy. I don’t know if the physical therapy, the ultrasound, or just my body continuing to fall apart was the cause, but inside a few weeks I was barely able to walk at all.

I went back to the doctor–with husband insisting on coming along (yay!)–after literally falling down on the ground because my legs gave out. It wasn’t the first time this had happened, but it was the most shocking and the most painful. My left leg, in particular, felt like there were large hunks of twisted metal in it when I walked mixed in with the feeling of cleavers. The twisted metal and cleaver pains were new. An MRI, some x-rays, and a physiatrist appointment later, I was getting epidural cortisol injections to my spine. They helped a little. The physiatrist said that the amount of pain I was in didn’t make sense based on the testing. Then he added something wonderful. He said, “There must be something else going on.”

When I finally got in to see the gynecology specialist, I had yet another intra-vaginal ultrasound. This one with saline because she thought I had uterine polyps. She was right. That experience was so painful I could barely stand afterward, let alone walk. I was scheduled for a hysteroscopic polypectomy. That also helped with a little of the pain. Again, I was told there must be something else.

After those two procedures, chiropractic and physical therapy visits were more useful. I could get from the bed to the bathroom with out resting. I could eventually walk from my car to my appointments without gritting my teeth or taking breaks. The blood in between my periods was gone, but my period pain was no better. It was still getting worse, and the rate of my cute little decline had increased as my physical activity had decreased.

In May, we moved to San Diego. In July 2016, I wept, yelled, and pleaded my way into laparoscopic surgery to remove the Essure coils (and my fallopian tubes because that’s how that’s done) and to look for Endometriosis. I was in so much pain–back breaking, mind numbing, fully crippling, life-hating pain–during my periods that I went in asking for a hysterectomy. She talked me down. During surgery, she found extensive Endometriosis. For whatever reason, whether it was all that exercise I used to do, my low-estrogen diet due to Hashimoto’s Disease, or just pain luck, I had very little scar tissue and no adhesions. She deemed it Stage 1 Endometriosis. When the pathology report came back, it verified Endometriosis, said that my removed fallopian tubes showed not only a bunch of endometriosis, but also evidence of a previous burst. It didn’t specify if that was from an Essure coil puncturing a tube or from something else.

23 years after first seeking help, I got it. My uterus prolapsed mild-moderately after surgery. Lupron wreaked havoc on my body after surgery. But, I’m figuring out how to walk again. It’s arduous. It’s frustrating. It’s painful. It’s also working–slowly. This is part of what was so hard about today.

All those little mentions of non-Endo pain mostly have to do with another health condition called Ehlers-Danlos Syndrome. It’s a collagen disorder. People with Ehlers-Danlos are extra flexible and are prone to dislocations, subluxations, sprains, and the like. It also takes us longer to heal. And there’s a higher rate of Endometriosis among Ehlers-Danlos sufferers than among the general population.

And I’ll type this again for my own stubborn benefit: It takes me longer to heal. I am no longer fast. I am no longer physically strong. I have trouble lifting a gallon of juice, let along a hay bale.

And not only did I finish dead last today, I couldn’t even speed up for the photo at the end. I just couldn’t. It wasn’t physically possible for me to go faster. I was already hiding a limp and pretending to not be nauseous. Lisa said not to worry about it, to keep going at whatever pace I could manage (thank you for that). But I do worry about it.

I used to keep myself going because even if everything hurt, I could still walk. As long as I could walk, I would be okay. And I know it’s been less than a year since surgery. I know that I’m still clearing hurdles, even if they are only 3 inches tall.

I also know, as of today, that I have to find new ways to define myself. Because the effort to get well is more important than my notions of who I am.

I am no longer fast. I am no longer strong. These are things I need to accept because, in hindsight, holding on to those two identifiers so desperately probably did me more harm than good in my past recovery endeavors. Pushing myself to get to a goal is not something I can do anymore. The risk of long term harm is too real.

The difference between being able to physically get myself out of bed or not is as small as turning incorrectly or walking too fast. I have to be okay with just finishing. I have to be okay with not finishing. Because I have to be okay.

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I want to send a special Thank You out to Sarah for being brave enough to share her personal story, struggle, and small victories with us today.  You are a beautiful, brave, and strong woman.  You’ve been an incredible support and inspiration, a driving force with our little circle.  And I adore you for it.  Your brutal honesty with yourself, and our readers, has brought me to tears today.  Continue to embrace who you are.  ❤

 

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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.

Share Your Story: CS

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CS was diagnosed with Endometriosis when she was 34.  Now a year later, she shares the story of her diagnosis with us.

CS’s Journey:  I didn’t think I could have endometriosis because I didn’t have bad menstrual cramps or heavy bleeding. What I did have, were bouts of pretty severe-left-sided pelvic pain. I first started noticing it a few months after I had my child, and I don’t think I have to tell you that I was repeatedly misdiagnosed.

Eventually, an ultrasound just happened to spot an endometrioma on my left ovary. I had exploratory surgery, during which my surgeon removed the endometrioma – and found endo also growing on my ureter, sigmoid colon, and so forth. I’m feeling better since the surgery, with much reduced pain. Now I have to decide what I want to do next with my treatment

Words of Advice:  I guess, don’t rule out endometriosis just because your periods aren’t bad. It can still be hiding in there.

I want to send a special Thank You out to CS for being brave enough to share her personal story, struggle, and victories with us today.  Thank you for sharing your Journey!!!  Hoping it helps others going through similar issues.

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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.

Share your Story: Nathaly

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Nathaly was diagnosed with Endometriosis, Adenomyosis, and fibroids when she was 26 years old.  A year later, she shares her story with us.  And, Nathaly will be walking on March 25th with friends and family at our Endometriosis Awareness walk! Looking forward to meeting her ❤

Nathaly’s Journey: My story starts when I was only 11 years old. I often found myself curled up in a ball waiting until I would finally pass out so the pain could be over. My mother was very strict growing up so birth control was out of the question, even if it was for medical purposes.

I was rushed to the ER once when I was 19, one of the responders said his daughter was on birth control to help with pain. Being an adult now I had the ability to seek medical advice but being on my moms insurance meant I would have to go to Planned Parenthood to get birth control. Being on birth control made it not necessarily easier, but more predictable.

I also started going to an allergy specialist as I noticed certain foods were contributing to making me feel ill. After I went wheat and dairy free I began feeling better. By 25 I started to eat all food again and the pain and exhaustion came right back.

While working at the barn one day I felt lightheaded and my vision went black while I had shooting pains down my legs. Later that day a coworker overheard what happened and told me it sounds like Endometriosis. I began researching it and I had every symptom of Endo. I went to visit my doctor and she called it painful cramps and told me to take ibuprofen. Feeling discouraged I decided to hold off on seeking anymore medical advice.

In 2015 my mom had a partial hysterectomy and told her doctor about me. Dr. Mackovic-Basic, the founder of Complete Women Care specializes in reproductive disorders and could tell me on my first visit it was most likely Endo. After my ultrasound she said it also looks like Adenomyosis because of the enlarged thick shape of my uterus.

I had my first laparoscopic surgery Nov 2016 where they confirmed stage 2 Endo and Adenomyosis but they also removed large fibroids that had necrotic tissue from being hidden so well for such a long time. After two weeks I knew something was wrong and it wasn’t just healing pains. I had sharp belly button pain and my right side was throbbing. My doctors all agreed it may be time to see a GI specialist.

December 2016, almost exactly a month after my surgery I was rushed to the hospital. There was a lot of fluid in my stomach and my white cell count was concerning. I had appendicitis and it was stuck to my adhesion removal site causing widespread infection in my uterus. Following surgery I have been put on a strict diet, no red meat, no soy, no artificial sugars, limited dairy, and some veggies and fruits are restricted. I currently take whole food based prenatal, DHA, B complex, and Tumeric for inflammation. I had to do pelvic training therapy for six weeks.

February 2017 I had my eight week post op check up and my inflammation has not gone down yet. Fibroids have already grown back but are only at 1cm currently. I am going on round two of six week pelvic therapy and once this is done I can hopefully complete testing with a GI. Next year I’m going to do a Hysterosalpingogram so we can try for a baby. I’m feeling hopeful that all the steps I’m doing now will greater my fertility chances and lessen my chances of miscarriages. After my first child my doctors and I think a hysterectomy is my best bet to tackle the Adenomyosis as well as any GI issues I may have. As for now it’s all a waiting game.

Words of Advice:  Never give up finding your answers, especially when your body is trying to tell you something.

The Last Word: I love reading stories on Bloomin’ Uterus, I feel this is a special place we can all connect and learn from each other.

If you wish to contact with Nathaly, you may email her here.

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.  I am glad that you pursued your medical diagnosis, understanding something wasn’t normal!  And hoping that you continue to heal up from your surgery and the inflammation and fibroids dissipate.  Thank you for sharing your Journey!!!  Hoping it helps others going through similar issues.

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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.

Share Your Story: Patricia

 

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Patricia was only 16 years old when she was diagnosed with Endometriosis.  Now 42, she lives in Montreal, and tells her tale now.  It includes a progressively worsening diagnosis, a full hysterectomy, ongoing medical treatment, and 32 surgeries!  Despite her medical efforts and treatment, she continues to suffer with the illness.

Patricia’s Journey: I was diagnosed with endometriosis at the age of 16. It wasn’t too bad at that point, but between the age of 16 to 21 it went to stage 4. So it was decided at the age of 21 to have a full hysterectomy, thinking it would be a cure. I also had tried all the medications that were available at the time to treat it. Nothing worked not even the full hysterectomy.

From the age of 21 until now I’ve had 32 surgeries.

Nothing would stop the endometriosis and at the age of 42 I now have it on my bladder and cysts around my pelvis. I never imagined this would be a life long fight against a disease I have no control over.

When I had my hysterectomy at 21 it was soul shattering, I thought I won’t be a real woman anymore. Like Pinocchio wasn’t a real boy, I was no longer a real woman. It also affects every part of my life, my relationships, my dreams, everything I wanted my life to be. It took a while for me to accept my fate but eventually I had no choice.

Till this day I fight chronic pain and this crazy disease called endometriosis. I will never stop fighting for myself and my fellow endometriosis sisters. We also fight for the next generation of women who may have endometriosis, we fight for them too.

We are 176 million women affected by endometriosis worldwide.

We deserve a voice and a cure 💛.

Words of Advice:  You will have days where you feel like giving up, but you are stronger than you think. We must fight together to find a cure. We must also lean on each other when things become overwhelming. We are stronger together in this fight than we would be alone💛

The Last Word: I wish the medical community would take endometriosis more seriously. When we come to you for help, don’t belittle how serious our pain is. We live in chronic pain that most cannot even begin to comprehend. We don’t want pity, we just want understanding, more awareness and a cure.

If you wish to contact Patricia, you can email her here.

I want to send a special Thank You out to Patricia for being brave enough to share her journey with us today.  And those strong words of encouragement!! THANK YOU!  Wishing you luck in your future procedures and, as always, wish you relief. ❤ Yours, Lisa.

downloadAnd 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: April

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April was diagnosed with Endometriosis when she was 30, but suffered with the pain for over 18 years before she knew what it was.  Like so many of us…Now 37, she lives in Ardmore, Canada and shares her story with us today.

April’s Journey: I was born in Georgetown Ontario in 1979, my parents and I moved to Alberta when I was 2 years old. I was a shy quiet kid growing up so and I still am quiet and somewhat shy at times lol, so it amazes me I am standing here today telling you my story.

When I first started experiencing Endometriosis pain I was about 12 years old when the first menstruation cycle shown up in my life. I had very painful periods basically from when it first arrived and I was continuously told it’s normal, take Midol. I believed it so I went on through life in constant excruciating pain that made me nauseous and sick all of the time. My periods ended up quite heavy as the years went on and at age 14 I had experienced a different more stabbing like pain in my right lower pelvic area. It turned out a cyst had ruptured on my ovary. Again it’s “normal” this happens to everyone. Our family doctor had put on birth control at this time to ease/subside the pain.

I eventually stopped taking the birth control and as I got older the pain kept getting worse every month, and then ever now and then I saw clots. I didn’t know what to do except take extra strength Midol or some other over the counter drugs like Tylenol or aspirin. Nothing ever helped.

When I was in my early 20’s I was out of school, working and one day I was at my job and I remember it so vividly. I was standing at my station (I worked in a pretty large paper plant that made all sorts of forms in Edmonton) and I almost passed out from the pain that hit me in the same spot when I was 14. . I was rushed to the hospital by a coworker and the doctor said a cyst had ruptured. I was told there was nothing they could do so I was sent home.

I met my husband in 2004 and we got married in 2006. We moved from the city to the Lakeland area where he’s originally from in 2007. Like most couples we wanted to start a family and for about a year nothing was happening. We went and seen a doctor in Cold Lake voiced our concerns and I was put on a fertility drug called Clomid which was not the best idea because it caused a 4 inch cyst to grow on my right ovary which had caused me unbearable pain. I had emergency surgery June 2008 to remove the cyst, and my ovary was saved.

After seeing a couple of doctors including a fertility doctor (which was a 9 month wait) and had several tests done which included a laparoscopic surgery, we were given a 10-15% chance of natural conception but we could try IVF. We were devastated, but we decided to discuss adoption for the future.

The pain happened yet again on my right side a few months later and I was referred to the last and final doctor. He didn’t confirm it at the time but he said it had sounded like I had Endometriosis and according to all of the tests and the laparoscopic procedure I had shown that my uterus was scarred, my right Fallopian tube was completely blocked and my left was partially blocked so that was the obvious problem. I didn’t understand why we weren’t told this a few months prior. I had no idea what Endometriosis was at the time and he said the only way to live without pain was to have a hysterectomy. I believed him because he seemed to know what he was talking about. And after 18 years of living with pain I said ok because I cant live this way much longer. I went home and I was so concerned about the hysterectomy I didn’t do a whole lot of research on Endometriosis, I just wanted to be free of the pain.

A few months later after celebrating my 30th birthday I got the call that my surgery was booked. March 19th, 2010, was the day of my surgery and the day that would forever change my life, it was the day I got the final diagnosis…Stage 4 Endometriosis. The disease had reeked so much havoc inside my body my reproductive organs were a mess. My uterus was retroflexed pushing on my bowel and my fallopian tubes and ovaries were twisted. My right ovary was attached to my bowel. Its no wonder I wasn’t able to conceive.

The next 5 years or so was emotionally impairing, I developed horrible anxiety and depression set in hard. My husband was, and is still, my rock and he supported me so much through this painful journey and same with my best friend Cari , she was and is always there for me and supported me. Our friends and family knew the struggle we had been through. But no one truly knew how I felt or the emotional, painful turmoil I went through. The emotional pain my husband felt because there was nothing he could but hold me while I cried for days at a time.

I am not a religious person, but I thank god I found the women and the Endo online support group in November 2015 when I did. I wouldn’t have found my best friend April who shares a very similar story to mine. I probably would have continued to suffer alone and not be where I am today.

Words of Advice for Us:  Please ask questions, you know your body better than anyone else does and you deserve proper care and answers. We don’t deserve to suffer the way we have for many years. Periods are not supposed to be painful.

The Last Word: I want to thank all of the people in my life including my husband and my best friend Cari for standing by my side and not letting me go when I was at my worst but held on so tight when I just wanted to give up.

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

I want to send a special Thank You out to April for being brave enough to share her personal story, struggle, and victories with us today.  I am so grateful that you have such a loving a supportive network of friends and family, and am glad you are no longer alone! You are a beautiful, brave, and strong woman.  Thank you!!!

 

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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.

Share Your Story: Patti

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Patti was diagnosed with Stage IV Endometriosis when she was 21 years old.  Today she is 52 years young and lives in Ontario, Canada.  She continues to suffer, but holds tightly onto Hope and has a wonderful network of supportive and understanding friends and family.  Fight on, Patti.  Fight. On. ❤

Patti’s Journey: My Endometriosis Journey, By: Patricia Anne Young

One day after school, my friend invited me back to her place for a swim. We got changed, and I told her I’d meet her outside, as I had to use the washroom… little did I know I was about to become a “Woman”. I was 12…

By the time I was 16, my periods were horrendous, painful, & very heavy, like having Montezuma’s Revenge! My family doctor kept telling me that “all girls (your age) have painful periods…” and then one day I read about Endometriosis in Chatelaine Magazine, so off I went to the library to do some research. When I brought it to the attention of my doctor, he told me to “stop spending so much time in the library and go out and have fun…” But that’s just it, I wasn’t having any fun, I was always in too much pain, or bleeding too heavily to do anything.

One day, in Grade 9, my pain/bleeding was horrible, so I signed out and walked to the bus stop to catch a ride home. While waiting, I became faint…just then the bus arrived, the driver recognized me & he got off the bus to help me on. He asked the person in the first seat to move so that I could sit there, and he could keep an eye on me. He remembered my stop and helped me off the bus. I walked home from there, which seemed like an eternity, but actually, it’s only a 5min. walk.

My mom took me to the family doctor, to find out if there was anything he could do for me. He advised putting me on birth control would alleviate the pain and length of time my period lasted. Mum wasn’t too keen on that idea, being a very strict Catholic; however, she filled the prescription for me.

While I still had quite a bit of pain, it did work for the most part. I had to keep changing prescriptions because I’d start to spot. At age 21 I became pregnant. At 10 weeks’ gestation, my boyfriend of 3 years became physically abusive and I hemorrhaged. Following the termination of my pregnancy, the pain in my uterus felt like Edward Scissorhands was living there! A few months later my appendix burst and while in the OR, the surgeon noted a lot of old blood in my abdomen and asked a gynecologist to have a look. He said: “this poor young lady has Stage 4 Endometriosis” And my journey began…

Between the years of 1987 and 2016, I have had a total of 16 surgeries, met with a number of specialists and have had numerous procedures, including ultrasounds, mri’s, ct scans, colonoscopies, x-rays, not to mention different therapies such as massage, physio, osteo, pelvic therapy, as well as Lupron, acupuncture and botox injections. I have also been on a gamut of medications from Tylenol 3’s to Oxycodone – Fentanyl Patch to Methadone. I am currently trying Cannabis Oil, with fingers crossed that it brings my pain level below 5/10.

Following a hysterectomy and lysis of massive bowel adhesions in 2007, I was pain free for 1 year. Then one day while doing the dishes I had an intense pain on my left side. I made an appointment to see my gynecologist, she did some blood work, and sure enough, because an ovarian remnant was left behind, adhered to the Sigmoid Colon, my endometriosis remained active. I had 3 injections, over 3 months, of Lupron, which was supposed to suppress the endo activity, but it did not. Further surgery to remove the ovarian remnant was not advised as it would have been too risky and a positive outcome couldn’t be guaranteed. I was referred to a pain clinic in Toronto for Pain Management.

In 2010 I had to stop working due to the severe daily pain, which affected not only my ability to have a career, but my relationships with family and friends, always having to cancel engagements due to pain, and I could no longer compete in equestrian events, which had been my very much loved passion from the young age of 8. Exercising is difficult to say the least, even Yoga!  Along with the chronic abdominal pain, I have chronic issues with my digestive tract (hiatus hernia), bowel and bladder issues (IBD, LS, and Chronic Bladder infections).

This disease has greatly impaired the quality of all aspects of my life; however, having a supportive husband, sister & a few close friends has been invaluable when trying to cope with Endometriosis.

Words of Advice for Us:  Early diagnosis is key and your first surgery should be with a specialist that knows about Endometriosis, Excision and Lysis of Adhesions. Advocate! Do your own research and speak up, don’t be shy, after all this is your body and future at stake. Having an understanding support system in place makes this journey a lot easier to get through too.

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

I want to send a special Thank You out to Patti for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  Thank you!!!

 

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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.

Share Your Story: Lakia

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Lakia was diagnosed with Endometriosis when she was 29 years old, after suffering with symptoms since the Sixth Grade.  Now she’s 30, living in San Diego, and she’s found our little support group.  I met Lakia just a few weeks after her diagnositic surgery and she’s recently undergone a difficult decision for her second surgery! Lakia has proven to be an amazing and incredibly strong woman, and someone I am proud to call friend.  Her story follows…

Lakia’s Journey: I always thought in my mind that my reality was normal. But what is normal? My first period was in sixth grade. I remember being so excited because I finally felt like a woman! I stuffed my bra everyday, secretly shaved my legs, and wore tinted lipgloss. But that first period felt like a rite of passage. All of the boys will like me now! Little did I know what was ahead…

Every month during school, I would bleed through my pads because of the heavy flow. I was too afraid to get up during every session at school, and didn’t want the attention constantly drawn to me when I had to leave the room with a pad or my purse. Everyone would know… Instead, I would bring jackets and sweaters to school, and keep them wrapped around my waste to soak up the leakage. This became my sixth grade’s self normal.  In high school is when I recall the pain becoming unbearable. But, all girls complained about their period. What would make mine different or more significant? When they became irregular, I finally was put on birth control pills. I took 1000mg of naproxen every 8 hours when I was in my cycle as well as the polls through college. The medicine helped with the pain for the first few years, but over time the cramps became debilitating again. After college, I decided I need to give my body a break and stopped all medication.

Fast forward to 29 years old, and I’m living in San Diego. January 2016, the year of 30 kicks off with a vengeance. The worst period of my life- vomiting, debilitating cramps, flooding from bleeding, you name it, I had it. When the bleeding stopped, the symptoms didn’t. I decided to go to the ER after trying to push through it for a week. Diagnosis was a hernia, fluid in my lungs, anemia, and fibroids in my uterus. They couldn’t do anything for me except give me pain meds and send me on my way. For the next three weeks, I visited 10 different doctors, has CT scans, ultrasounds, blood tests, X-rays with not solution. I lost close to 10 pounds living on norcos to ease the pain. In an transvaginal ultrasound, they found a softball sized mass in my uterus. The GYN wanted to operate immediately due to its location. Unfortunately, I was anemic which would likely mean I would a blood transfusion during surgery. I had a month to iron overload.

Surgery is complete.  Unfortunately, my GYN was not able to remove the mass as it was attached to my bladder. She drained it and assured me that it would be back. What should have been a laparoscopic surgery became a lapraromy as soon as they went in due to the their findings of severe stage 4 endometriosis. I got to spend a night in the ER. Post surgery, it only took about a week for the pain to return. I was told to start taking two birth control pills a day to help with the bleeding and pain. My GYN said she didn’t feel comfortable operating my endo because it was so complex, so she referred me to another doctor.

He, also after reading my surgical report didn’t feel comfortable doing a procedure, and suggested Lupron and referred me to a gynecological oncologist. I originally agreed to the shot. While I waited to have it administered, I took a month to do some soul searching and listening to my body. It wasn’t right. I couldn’t take the shot. The oncologist agreed to the surgery. He did admit to me that he felt a bit of ethical concern giving a woman who has never had children and only 30 years old a hysterectomy and gave a bit of pushback before agreeing to the surgery.

December 13, 2016- surgery day! I had a full hysterectomy. He wanted to try to keep some, but they were all obliterated by the endo. In the middle of the procedure, he had to call my dad because the disease has spread to my bowels and appendix. About 5 inches of my small intestine, 5 inches of my large intestine, and my appendix were removed requiring that he perform an organ resectomy. He predicted that I would have had to have emergency surgery due to organ failure caused by the endo within the next few months if he had not operated on it that day. My doctor was relieved that I went with my gut, and pushed for the surgery instead of waiting.

After six days of being attached to IVS, living with a draining tube coming out of my stomach, and hour long sleep sessions, I was free!!

I’m in the process of recovering still (2 months post-op), and I never would have imagined that I would feel this amazing! I know I have a long road ahead, with the possibility of the endo popping back up, but every decision made, tear shed and prayer prayed has been absolutely worth it.

Words of Advice for Us:  Sisters- two things that are so incredibly important through this whole journey… SUPPORT!- Thank God that a friend found the Bloomin’ Uterus group for me! It’s incredible to have a connection with so many strangers that can relate, mentor and just listen when you need them. And friends!!! My friends and family have completely blown me away with the amount of love, compassion, and time they have spent learning and loving me through this process. My Dad came to every single appointment with me, and I even had over 50 people show up for a going away brunch for my uterus!!! Knowing that you’re not alone is half of the battle! LISTEN TO YOUR BODY- like I said, my doctor wasn’t gung-ho about the surgery, but was incredibly happy we went through with it in the end. A hysterectomy is not the answer for everyone. It’s certainly not a cure. But push, plead, fight for what’s good for you and your body. You deserve it!!

The Last Word:  Thank you Lisa Drayton for your positive energy, informative posts, and constant encouragement!!! You are truly an incredible person!!!

If you wish to contact Lakia, you can email her here.

I want to send a special Thank You out to Lakia for being brave enough to share her personal story, struggle, and victories with us today.  I am so grateful that you found us and that we met, but am especially grateful that you followed your instincts!  A second surgery is never easy – ad your decision to undergo the full hysterectomy was a difficult one, but I am SO VERY HAPPY for you!  Good for you for pushing self-advocacy!!!  Wishing you a continuous good recovery!  I will walk proudly beside you on March 25th! Yours, Lisa.

downloadAnd 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 : EMS

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EMS lives in New Zealand and was diagnosed with Endometriosis this year – at age 34.  This year she exhibited signs of a stroke, dizziness, trouble breathing, all around her period – she fought for a proper diagnosis, and had to fight hard.  Stage IV Endometriosis.  Not stress. Not anxiety. Not a stroke…Endo.

EMS’s Journey: Wow…. okay so in February this year I was having excruciating pelvic pain. Doctors in the ER thought it was gallstones so they treated me as such. Upon them trying to flush the gall stones with meds, my body re acted and we now know it was Endo that I have. My brain slowed down and all of a sudden I couldn’t think to form a sentence, then my eyesight went blurry, then I started seeing double and the room was moving. Then my limbs shut down and I couldn’t move at all and I developed a shocking stutter out of no where. The stutter lasted close to two weeks. One incredible doctor got me up and moving again but only incredibly slowly, but it was enough for me to get myself the rest of the way. After many doctors came to see me to work out what was wrong, I had a CT scan at which time they were looking for evidence of a stroke and didn’t find any of such evidence. They didn’t tell me anything, they just told my partner that they didn’t find any sign of a stroke.

When we look back on things, we know that I was day 2 into my monthly cycle at this time. I was diagnosed as having my brain go on holiday. I kid you not, that was the diagnoses I was given. That particular doctor said that once I rid my life of whatever was causing my stress, I would come right. Of course I didn’t come right.

Then come April, I had my very first seizure. Full blown seizure. I struggled to breath. I remember gulping for breath. I was taken to the ER. The doctor there said that it must be stress. She couldn’t put it down to anything else. I asked for a CT or MRI, I was very angry and said I’d never had a seizure before in my life and demanded that she get to the bottom of it. She said that as I’d had a CT before and it was unremarkable there was no point sending me for another one. So she discharged me.

I went home and the very next day I seizured again, again gulping for breath. Back to the ER. This time I had a doctor who was more intent on getting to the bottom of it and he sent me to neurosurgery. A team there monitored me for a number of days but decided that I had extreme anxiety and that I was in denial. I tried so hard to say that that wasn’t me. They put me on antidepressants and made me see a therapist. So I saw a therapist for weeks and she said after my very first visit that she could not detect any anxiety and she worked with me to get my GP to arrange for me to have an EEG. The antidepressants also ironically made me very depressed and I demanded that I come off them. The EEG showed definite signs of seizures and I seizured in front of the neurosurgeon there, but there was no signs whatsoever of epilepsy. My doctor put my on seizure meds which helped for a long time until I asked to come off them. They were only masking the affects of everything.

Not long after I came off them everything got a whole lot worse. We didn’t think it could get any worse. My brilliant partner asked to have me checked for my female parts as he had noticed that things only went haywire at that time of the month. Sure enough I was diagnosed with Stage Four Endo. Now I have a Zoladex implant, but the seizures are still active. I am currently waiting so see a consultant.

I have done huge amounts of reading to try and find a link between the Endo and the seizures. I’m not medical person of any sort and no medical person yet has been able to confirm any of this, but from what I have read, in very rare cases the Endo can get into a persons central nervous system. I had two rounds of spinal surgery 5 years ago and had rods put either side of my spine and screws put into my spine and then removed during the second round. I have to wonder if that has something to do with it all. If the Endo has maybe attached itself to my spinal cord. I intend to ask the consultant this when I see him. I just hope that’s not too far away.

So for now, I have seizures every month. And its scary as hell, but today, for the very first time, I have found some relief in finding this blog and others who have this also and who are also looking for answers. xo Thank goodness for you all!!

Words of Advice for Us:  If you know it in your bones that you don’t feel right, fight for yourself!  Get the answers you need, because you owe it to yourself. xo

The Last Word:  Know that there are others out there, sometimes we spend hours searching, days, months searching, but we can find others who know xo Today, I found this blog and I swear its like a Christmas present to me to have found it. Now I’ve found others who also have seizures.

If you wish to contact EMS, you can email her here.

I want to send a special Thank You out to EMS for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  I am SO proud of you for continuing to push for your answers.  And am very, very, very glad you found this site. We are all wishing you the very best in your upcoming appointments and hope that your healthcare providers are able to do something about those seizures – and to check out all areas of concern. Thank you!!!  Please keep us posted!

 

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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.

Share Your Story : Tara

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Tara Langdale-Schmidt lives in Florida, and was diagnosed with Endometriosis when she was 11 years old! She also suffers from Vulvodynia.  Now 32, Tara invented a treatment that is helping women who suffer from pelvic pain all over the world. Today she shares her story and struggles, but also shares her victories.

Tara’s Journey: It started when I was 11 with my first surgery. Doctors did not know what was causing my abdomen pain so they the scheduled exploratory surgery. They found a huge cyst which had cut off the blood supply to ovary which killed it. They removed that ovary and tube. This was the first of many surgeries for cysts and endometriosis over the next 20 years.

Endometriosis caused pain during sex, it was an uncomfortable feeling deep inside that I became used to. My sex life was normal besides the endometriosis pain. Initial penetration was never painful until I started to experience a different kind of pain, a very sharp pain I had never felt before.

My nightmare experience with sexual pain began mildly and I started going downhill in 2010. It began as mild pain during intercourse in my vulva. As time when on, the pain became worse, it felt like someone was stabbing me with a knife and burning me at the same time. Intercourse would trigger the pain and it would still burn after having sex. Nothing helped the pain or made it go away. I only told my best friends, and they had never heard of anything like what I was experiencing. Neither had my fiancé, Jason.

I didn’t know it then, but I was suffering from the excruciating pain of Vulvodynia. The pain, both physical, emotional and mental, was agonizing, made it impossible to enjoy sexual intimacy with my future husband and impacted my quality of life for four long years. The burning and stabbing escalated and I would not have sex at all with Jason. We were getting married and probably not going to be able to have intercourse on our wedding night. I was becoming depressed over the thought of never being able to have enjoyable sex again.

My primary gynecologist told me if sex hurt to drink some wine and take Advil. That was in the beginning stages before the pain became worse. Then he realized it was serious, I still didn’t have a diagnosis and I was confused and worried about what was causing the pain. I actually asked my doctor if I had something called Vulvodynia because I found it on the internet. He agreed that is probably was Vulvodynia. He wanted me to try the numbing creams and after that he called several doctors and told me none of them had a treatment plan for Vulvodynia. He stated doctors did not know what caused it and he was sorry he couldn’t help me. I was given a prescription for Gabapentin cream and Ketamine creams. These are compounded creams, that might help the nerve pain, I was told to use twice a day. Both of these creams cost over $125 each and did not help at all. Also, I tried lidocaine injections which only lasted an hour and left me hurting from the needle. I had many surgeries for endometriosis and cysts, and one surgery they went in vaginally instead of through my abdomen. I thought that maybe the pain resulted from scar tissue. My doctor also thought it could be scar tissue as well.

After no relief with numbing creams, I decided to go to a pelvic pain specialist. He told me that I could take an antidepressant because it can help with nerve pain, do an injection or have a surgery to remove part of the vestibule that was hurting. I did not like these options. I do not like taking painkillers and especially not before sex. After suffering for so long and getting no answers I decided to take matters into my own hands. I had to take action.

From my previous positive experience using magnets to reduce back and neck nerve pain after a car accident, I had a “lightbulb moment” idea to incorporate neodymium magnets into a dilator set for pelvic pain. I used the magnetic dilators for two weeks and then had sex with my husband for the first time in months with less pain than normal. I had just starting using the dilator for the first time about three weeks prior to my wedding and I was actually able to enjoy my wedding night. I didn’t think that was going to happen. My husband, who was so supportive, was as thrilled. I was able to have sex without pain.

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Due to my reduction in pain and positive feedback after speaking to doctors about my magnetic dilator treatment and pain reduction, I knew I had no option but to create a startup company dedicated to helping other women with pelvic pain. With my personal pain issues resolved, I knew I had to help other women. Working with my good friend and business partner Robert Smithson, we together founded VuVatech, a company based in Sarasota, Fl. dedicated to helping the estimated one-in- seven women in the US who suffer from pelvic, vulvar pain. With the help of medical experts, we invented a medical device, the VuVa Magnetic Vaginal Dilator that has proven to relieve pelvic pain and sexual discomfort and has improved the lives of women seeking sexual normalcy.

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VuVa Magnetic Vaginal Dilators are a new, non-surgical approach to helping millions of women suffering from multiple pelvic pain conditions and sexual comfort. The dilator therapy can also be incorporated into treatment plans for other conditions such as Vaginismus, Vulvar Vestibulitis, Dyspareunia, Menopause, Vaginal Stenosis, Vaginal Atrophy and Vaginal Dryness. Many women suffering from these pelvic pain conditions have been placed on heavy pain medications, anti-depressants or have been advised to have invasive surgeries with low success rates.

Our VuVa Dilators offer a low cost, safe, non-invasive treatment option to renew the sexual desire and comfort women deserve. Since VuVa Dilators became available on the market in late 2015, we have only used social media, google ads and pelvic pain forums to direct traffic to our website. After selling over one thousand dilators and receiving positive feedback, it validated our decision to perform clinical trials. Clinical trials have provided beyond positive results by reducing nerve pain in subjects, so much so, that each subject purchased a set of VuVa dilators at the conclusion of the study.

Today, sex life with my husband is great. If I use the dilator twenty minutes before we have sex, I can have close to pain free intercourse. During my research I have found Vulvodynia can disappear or become less painful. I used to feel broken and now I am hopeful and thankful I have a device that allows me to have intercourse with less pain.

 

Words of Advice for Us: Using a magnetic vaginal dilator changed my sex life. My overall message to women is pain: there is hope, there are answers, you do not have to suffer. I’m a perfect example. Keep searching for what helps “You”.

If you wish to contact Tara, you can email her here.  Or you can get more information about Vuva magnetic dilators here: http://www.vuvatech.com/.  (I will be using the Vuva Magnetic Vaginal Dilators over the next several weeks and will most definitely share my results with my Readers – here’s to hoping it helps with my own painful sex experiences.  I am in no way endorsing Vuvatech or the Vuva Magnetic Dilators, but will keep you posted of my personal experiences). ❤

I want to send a special Thank You out to Tara for being brave enough to share her personal story, struggle, and victories with us today.  I am so glad that we met! You are a beautiful, brave, and strong woman.  Thank you!!!  And thank you for all that you do to help women who suffer from pain. ❤

 

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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.