Share Your Story: Erika

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After suffering from horrible periods and cramps since 13 years old, Erika 18 years old when she diagnosed with Endometriosis.  Living in Ireland, she shares her tale with us just three years later:

Erika’s Journey: This is just a short story of the life and pain I’ve been living in! My name is Erika, I’m 22 and was raised in Dublin.  I still live at home with my mother and brother seeing as its so hard to find a home at this minute in Ireland. It all started when I had my first period, I was in a lot of pain and had no clue of actually what was happening to me? All young girls oh I can’t wait for my periods to come so they would feel more mature ‘grown-up”. Where with me it was a different story completely, from my first periods all I remember was pain, very severe pain and didn’t know how to control it.  I thought I just had bad periods because my sister (5ys older) always suffered very bad which led to ambulances been called so I was scared that I was going to be the same. But when my sisters stopped ovulating her pain would go and she would be back to normal, when I wasn’t like that every month was a dread without a doubt the would come and with a bang! I couldn’t walk, move to go the toilet, bend to pick up anything id be left immobile for days and the pain was so awful I needed help I didn’t know how to make it stop 2weeks before my periods came I’m in pain and when the arrive yill days after they go it’s not right ! so after years of battling with my weight since I was a child with i coped with because of all forms of abuse I suffered I learned how to cope with food and depended on it to fill that hole in my stomach . as the years going on everything problem I had was “supposedly” because of my weight and my gynecologist was so rude and made me feel so scared I was 13 seeing on for the first time and let’s say she was a bitch!!! also she treated my sister with the same care not a nice women at all ! she made me feel so horrible like it was all in my head and if I wasn’t so overweight I wouldn’t be like this ? so as id always suffered from depression it went into a worse spiral from there. I Felt so low and disgusting in myself and I didn’t even know what was going on! I was left for years undiagnosed looking for ways to stop the pain, from all types of the pill to the contraceptive bar been but in my arm which all most of the time eased the bleeding somewhat but the pains always crept back in. Constantly been so all over the place trying to figure out an answer! I had missed lots of school because of my absence , my junior and leaving cert were very affected seen as I had to complete most of it at home to be even able to pass I also missed out on a lot of fun times growing up with my friends and family and also my Debs in school which every girl can’t wait for ! so as time goes on I was watching Tv one night and seen a girl speak to a doctor and she was going through the exact same as me ! I never knew anyone who I could speak to who was suffering the same! Everyone thought I was faking it when there was even a stage my pain meds wouldn’t work I felt as if I was going mad! I explained to my doc of what I had seen on tv and suggested that maybe “endometriosis” could be the problem ? and got the response of “oh i never thought of that ?” so after all the years fighting for an answer I found out what was wrong with me myself and not the doctors ? funny right? NOT! I was told if I didn’t get my weight down they wouldn’t operate on me? So that made me more upset because of the pain I was I could hardly walk up my stairs never mind hit the gym! But I slowly started walking as much as I could to lose the weight changed my whole eating plan as it wasn’t healthy at all! But I had in my mind now once I lose this weight the pain will be gone and ill be fine working extremely hard on myself to achieve my goal and I did! From weighing over 20 stones to get down to 12 stones was a huge goal for me I was so happy! Got weighed and got told well we can do your keyhole surgery now and I was both really scared but happy because I thought this is what I’ve been waiting for all years! ill be happy and healthy after it! But sadly I wasn’t, they done the surgery and found the endo on my right ovary and removed it then inserted the Mirena coil to help with my periods. It has been nearly 3 years on and I’m still in the same position that I was already in. I cant hold down a job because of my disease also my mental health has really been affected badly from all of this. It also affects every relationship I have in my life with people because I don’t know when the pain it’s going to start I have no control over it. So things haven’t had the best outcome at all, constantly in and out of hospitals with this disease and can’t find the right help. My last treatment option is for me to go on a “decapeptyl injection” which brings my body into early menopause for 3moths or longer ! and the side effects don’t look nice at all after stories I’ve read . its a road I really don’t want to have to go down but feel as if I’ve no choice anymore . I have done everything possible that the doctors have advised but I’m not going to put that injection into my body I mentally don’t think I could cope with the side effects but the hospital doesn’t seem to listen. Its my body and my choice ! Hoping things will improve soon ! only a brief description of how my life has been since this horrible disease as taking toll on me and my life

Words of Advice for Us:  know your own body and how different meds/treatments make you feel. Listen to your body and your mind. Go with your gut feeling in situations its usually always right! always ask as many questions as you can about side effects or long term effects! I have wanted a child so long and their answer time at age 14/15 was to have a baby its the only cure and it’s not always true! look after yourself and be kind to yourself life is hard enough day today and with the pain on top its an even harder to cope. Keep doing and getting through every day the best you can.

The Last Word: IT’S NOT ALL IN YOUR HEAD! YOUR PAIN IS REAL! AND mental health is as important as physical!! Beware of addiction caused by strong painkillers that you could be prescribed there dangerous ! and only use them when u really need to! water bottle and heat pads are your best friend. Anybody out there with any advice I would be very grateful to hear! and if I can help anybody in any way I will try or anyone can get in contact me also. Thank you.

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

I want to send a special Thank You out to Erika 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: T.E.

 

T.E. was diagnosed with Endometriosis when she was 28 years old.  Now 31, she shares her story with us:

T.E.’s Journey: I was diagnosed with Endo around 28. I saw my gynecologist for painful sex and cyst rupture after sex and he recommended me seeing an infertility doctor for possible Endo. I saw the specialist and he said I did have chocolate cysts and suggested surgery to get a good look at what’s going on. I had the surgery; I did have lesions and my chocolate cysts were drained. I also had a low count of eggs at the time so I had to decide if I wanted to have kids now or never so I never started the pill after surgery.

Fast forward six months, I was back in pain and now till this day, I have had new symptoms arise. Hip pain and the bottom of my feet are new symptoms. I walk for a living so it’s been difficult. I still get leg pain, which is not even around the time of my period and mood swings. I also get lower back pain and severe cramps. My infertility doctor says he can’t do anything else for me so I have been trying other ways. I saw a holistic doctor and went that way and it did help, but the pain came back. I’m going to try acupuncture soon. Wish me luck!!

 

I want to send a special Thank You out to T.E. for being brave enough to share her personal story and struggle with us today.  Wishing you the BEST of luck with acupuncture!! 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: Stephany

After suffering with horrible periods and cramps since 13 years old, Stephany was 31 years old when she finally received answers: her Endometriosis diagnosis.  Two years later, she shares her story with us.

Stephany’s Journey: I was 13 the first time I had a “bad cramp”. From then on they never went away & just got worse. I would double over in pain, movement in general while having a cramp just made it worse like a nerve being shocked in my abdominal area. I would just have to stay still until the cramp passed. I would ask to stay home from school during the first day or 2, and luckily a few times my grandmother let me. I tried things like Midol & other off the shelf pain meds but they didnt do a damn thing. It was like I just ate a skittle to try to manage my cramps, no relief.

When I was 14 we went to a doctor and talked about my cramps and I was prescribed Ponstel. It’s a prescription pain medication specifically for menstrual cramps. It worked great and I just stayed on it until a couple of years ago. But over the years my cramps were getting worse, and the medication wasn’t always helping. I started taking a double dose of it on the bad days just because it was the only thing that helped. That was against my doctor instructions but I HAD to ease the pain.

I missed work at times and asked to go home because I just couldn’t walk without that shooting, stabbing pain with every movement. My managers gave me a hard time about it because they didn’t think it was “that bad” and I got wrote up for these occurrences. It came to a point that they sat down with me in the office and talked about how I needed to get this under control or I may loose my job due to my attendance. But I couldn’t help that I needed to be off a few days out of the month…I wished they could understand it was real.

At age 31 I went to the doctor about pain in my ovary area & I couldn’t have intercourse without pain. This was taking an emotional toll on me because I felt inadequate when it came to my husband. Now to clarify he has been nothing but wonderful, understanding & supportive, this was just my own feeling about the situation. The doctor checked me out in every way possible, did ultrasounds, exams, gave me medication, all that he could think of…nothing changed. He did find that my left ovary was 3 times the size it should have been because it wasn’t working properly, which explained the ovary pain. He put me on birth control to help regulate that issue & it worked for a year. Except that I kept ending up with multiple infections that added to my annoyance!

I asked to be refereed to another doctor. That was the best thing ever. This doctor asked me a bunch of questions id never been asked in relation to my pain. Did i have migraines? For how long? When did the cramps start? Did i always have a heavy period? He asked about my ovary issues. During that first visit this doctor told me he believed I had endometriosis and was scheduling me for a laparascopic surgery. Laparoscopy is the ONLY WAY to 100% confirm a woman has endometriosis. It does not show up on x-rays or ultrasounds.

When I woke up from surgery the first words out of my mouth were “did you find anything?” Because I had to know that there was some reason for feeling this way! I had to know there was something wrong and it wasn’t in my head! What this doctor found was in his words “one of the most severe cases of stage 4 endometriosis” he’d ever seen. My abdominal organs were so covered in endometriosis tissue that they were knitted together and had to be separated. My right ovary had been destroyed, and he couldn’t separate my uterus from my rectal area due to possibly damage to those muscles which would result in me needing to use a colostomy bag. But I was relieved, I had an answer, I knew what was wrong with me. I was going to need another surgery though.

But first I had to take a 6 month treatment that put me into a medical menopause to help “dry up” the endometriosis. Estrogen feeds endometriosis & makes it grow, so he needed to stop the growth before he old attempt another surgery. He told me that so much damage had been done that I had been rendered infertile and he recommended a hysterectomy. He said that after seeing my insides that he believed I had had this since I was about 13. Those first cramps I had were the start of my endometriosis.

It took 4 doctors, from age 13 to age 31 to figure out what was wrong with me. And then the damage had already been done.

I’m just finishing my last month of treatment and having my hysterectomy next month & I just pray it all ends there. My biggest fear is still having pain after. Because despite common belief, endometriosis can still come back after a full hysterectomy. There is no cure. This is why I blow my Facebook up with information on this disease, I don’t want ANY WOMAN going through the unnecessary.

Words of Advice for Us:  Trust your body and make yourself heard. Don’t settle for the doctors explanation, know yourself.

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

I want to send a special Thank You out to Stephany for being brave enough to share her personal story, struggle, and victories with us today.  Good luck with your upcoming hysterectomy!!  Please keep us posted on your progress, and if you need anything before or after your procedure! We are family!! ❤ 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: Sandy

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Sandy has questions for our readers!  Sandy was 33 when she was diagnosed with Endometriosis.  Now 39, her pain has returned and she needs our help!

“Hi, I have posted before IDK name maybe Buffie1313. Anyway about 6 years ago I did get the shots that put you through menopause. I have struggled with my weight ever since. I did get the perfect wavy curly hair I always dreamed of. I noticed a few months ago my curls looked as if they where going bye bye. They pretty much are now. I have been able to start losing weight. And….my endo is back!!! The shots took close to 6 years to go away. I am getting the stabbing pain on my right lower abdomen, I always got it there. Now on my far left abdomen like hip bone or pelvic bone. My endo was not just before my period. It was all the time maybe with a few day break. I really feel like it is coming back with vengeance. I hurt through out my day off and on every day. When I am being active I feel like I am being stabbed on both points I said above left hip pelvis can be all day. I am feeling the pressure pain and stabs down in our lady area and other area down in that area. I refuse to do shot ever again!! To be really honest I am scared. Before sex started hurting. I had so much pressure pain down there the slightest extra pressure from sex was tearful. I have a long way to go for real life menopause to end this for good. What have you all tried that helps with this? FYI I am already on hydrocodone for neck problems..Thank God can you imagine how much worse this pain would be? But, never the less I have the stabbing, the feeling someone is taking a melon ball scooper to my insides. Any advice?”

Please feel free to email Sandy at buffie1313@aol.com.  She’d love to hear your advice.

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.