Share Your Story: L. George

Text that reads "I am not sure what to do next."

L. George was diagnosed when they were 25 years old. Today, at 52, they share their arduous journey with us.

L.’s Journey:   This is really tough to tell, as I have suffered with this awful disease for so long. I barely used to notice my periods in high school. Then, around age 21, the pain became so unbearable, but I just thought it was normal period pain. I never believed in going to doctors or taking any kind of pharmaceutical medication for pain. My mom raised me to never take aspirin or go to the hospital, no antibiotics for the frequent ear infections and bronchial infections I seemed to get a lot growing up. It was not uncommon for me to have a high fever (over 105F) as a child and ‘sweat’ it out, after dealing with it for at least a week wrapped in thick blankets to make me sweat. I never took any aspirin, or other OTC for the pain I felt at age 21.

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Share Your Story: Kat

An IUD and scalpel with text that reads: "I have a decision to make: mirena or hysterectomy?"

Kat was diagnosed this year with Endometriosis at 47 years old.

Kat’s Journey:   Over the last 2 years my cycles that were getting very light and very spread out (I almost went 11 months) have been getting worse. My cycle is never the same… it will go 50 days one month and 35 the next. Sometimes I get the incredible cramping but no bleeding. When I do bleed I soak a tampon in 30 minutes. It has been like this for the last 6 months.

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Calling all Oklahoma-based EndoSisters

Outline of Oklahoma with a yellow awareness ribbon

Do we have any Oklahoma EndoSisters? We have a blog reader who lives in Idabel, Oklahoma who is looking for Sisters to connect with. Not only connect with you via email, but also either find a support group nearby or start one!

If you’re anywhere near Idabel, Oklahoma…or in Oklahoma ANYWHERE…or want to connect with this EndoSister in Oklahoma, please drop me a comment or send me an email and I’ll connect you. It’s never good to feel alone in your area…

2019 Endo Events Around the Globe

2019 Events with a yellow ribbon

Hopefully you can find an event near you; just click on the title of the event and it will bring you to more information.  I’ll add to this as I find new events! If YOU have an event you’d like me to add, please email me.

United Kingdom:

Birmingham – May 25, 2019 – EndoBall 2019

Brighton – April 14, 2019 – Brighton Marathon 2019

London – March 23, 2019 – Worldwide EndoMarch UK – London

United States:

California; Los Angeles – March 30, 2019 – LA EndoMarch 2019

California; San Diego – March 30, 2019 – Bloomin’ Uterus Endometriosis Awareness & Support Walk

New Jersey; Saddle Brook – March 23, 2019 – 3rd Annual Our Journey 5K for Endometriosis

New Jersey; Saddle Brook – March 23, 2019 – Our Journey Endo Walk

New Jersey; Rochelle Park – March 30, 2019 – 3rd Annual Our Journey Endometriosis Awareness 5K

Share Your Story: Susie

Photo of Susie

Susie is 41-years-old and was just diagnosed with a surprise Endometrioma in a very surprising location.  She lives in Austin, Texas and is coming to grips with her diagnosis, as well as searching for answers and support.

Susie’s Journey:   I began experiencing symptoms of my disease when I was in my early 20’s around 2004-2006, I felt a lump on the right side of my groin that moved around a bit. I had a pap smear that showed normal results, then a sonogram that did show the mass, and then a CT scan that was inconclusive. I was told that cancer was ruled out and that they had no idea what it was, but that it wasn’t worth doing a biopsy over, but that if it ended up causing problems in the future, I might probably have to have one.

Being a young 20 year old, I feared the idea of anyone cutting my groin open and could not afford to get off of work for surgery anyway. I lived with the mass for over a decade. Throughout that time, I began noticing it growing larger and becoming more firm. It was no longer moveable and it swelled up around my menstrual cycle. The day before or the day I started my periods, there was extreme pain. The pain also continued up to a week after my periods. Sometimes, it made it a little difficult to walk and I’d get a bit of pain on my right leg, but not too much. It prevented me from moving and sitting freely. I couldn’t even cross my legs.

Fast forward to 41 years old, I finally decided that it was time to do something about it. I read up about endometriosis and even asked the doctor if it was a possibility. After about several pelvic exams, 2 or 3 sonograms, a CT scan, and a very painful biopsy that required 2 shots of local anesthesia in order to retrieve 2 samples of the mass, I was finally diagnosed with endometrioma.

I was given the option of excision or just living with it.

Doctor asked me if I’ve considered birth control and slightly suggested I use it. I told him that birth control would not remove the mass and did not help me much when I was on it in my 20’s and that I wanted this lump out of me. He said that he would perform a simple outpatient excision that would require very little (if any) time off of work and that I would be running around just fine afterwards. About 2 weeks ago, I finally had the surgery that did verify “endometriosis”. I was completely anaesthetized to sleep. Btw, I’m not sure what the difference of “endometrioma” and “endometriosis” is because both words keep getting used by my doctor and pathology report. My doctor corrects me when I call it “endometriosis” and says it is “endometrioma” and then the pathology report says “endometriosis”. My doctor seems impatient when I ask him to explain the difference. I almost wonder if he actually knows about what I have and doesn’t want to confirm my suspicion. I am in the dark about that right now.

WELL, I awoke from my surgery to find that my right foot and leg were asleep. I could barely move my toes. My feet have a tingly feeling and my leg has the same feeling as though it’s been asleep and is about to start waking up. I was told that because I could move my toe, it was a good sign and that I should be able to start walking just fine again in about a day. Since then, although, I regained some feeling back to the upper part of my leg and some of the left side of my right foot, I am experiencing Charley Horses” both in my sleep and mostly when I walk for the past week. I still have to walk very slowly with a cane and an extreme limp.

Yesterday, I was admitted into the emergency room to check for DVT (Deep Vein Thrombosis aka “blood clots in the leg”) but I checked out clean. The emergency staff told me that I did not suffer from dehydration and that my potassium levels were fine and that all he can think is that maybe my leg’s nerves are cramping because they are “waking back up”. I don’t know if I’ll be able to walk like normal again. It’s very hard for me to get around at work and college classes are difficult to get to. I have to have people do things for me. I had to cancel my birthday plans to go to the beach because I don’t think I’ll be able to walk around in the sand and the idea of a wheelchair is very depressing. I am getting married in October and am mortified of the idea of having to walk down the aisle or live my life with a cane. My follow-up appointment with my surgeon is next week. Although, I hope that I will be okay by then or that he’ll be able to help me, I don’t know if he’ll have any help to offer. It’s scary how little the medical industry knows about endometriosis. What is wrong with my leg???! Also, now I’m hearing that just because you have endometrioma excised doesn’t mean that it won’t come back and that I should consider a hysterectomy. I don’t want to go through this again. I almost regret having the surgery in the first place. I hope that it was worth it and that I will be able to walk again.

Words of Advice: Read as much as you can about it. Meet as many people as you can. Ask as many questions as you can. Don’t give up.

The Last Word: I hope that we can get more endometrioma awareness outreach out there.

If you would like to e-mail Susie, please feel free to.

I want to send a special Thank You out to Susie for being brave enough to share her journey with us today!  Congratulations on your upcoming nuptials!!  And good luck with your healing and the circumstance with your leg.  You have my email address, woman – keep me posted!!    ❤ Yours, Lisa.

Paper with "Tell your story" written on it

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

Share Your Story: Lish

causes

Lish was diagnosed with Endometriosis when she was 23.  Now, eleven years later, she shares her story with us from Ohio.  And she comes to you for help in answering some questions:

Lish’s Journey:   I was diagnosed with endometriosis in my 20s I went into the hospital with pain they thought it was my appendix’s so they went in and found out that I had stage 3 endometriosis. I had a cyst on my ovary and endometriosis all around my pelvic area.

I have had to have several surgeries due to having this. They ended up taking my left ovary out due to getting the same cyst again and again. I had a surgery and a week later it came back. So then that why they just went ahead and took the left ovary out.

I was scared not knowing if I would be able to have kids but I have a 7-year-old and a 1-year-old. So have faith don’t let the doc tell you otherwise ’cause that is what I was told I probably would not be able to.

Here lately I have had horrible back pain right before my period. I was just told that it’s more than likely from my endometriosis. I had my daughter a year ago so it was somewhat in remission. I am a stage 4 now. I came across this ’cause I am worried what I am going to have to face is a hysterectomy. The lower back pain is so debilitating I can barely get out of bed when it hits me. The pain shoots down like electric into my feet. I am trying to understand what spinal endometriosis is? Is it just the nerves that are being attacked by the endometriosis?

Words of Advice:  Don’t give up. People who don’t know what this does to your body will never understand unless you have gone through it. There are doctors out there who care to help.

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

My thoughts regarding spinal endometriosis:  It’s been said that it’s incredibly rare to develop Endometriosis of the spine.  I personally know of one friend who suffers from it.  And I’ve “met” a few other women online who also have a diagnosis of spinal endometriosis.  My laymen understanding is that the lesions may affect or impinge the nerves.  But, please talk to a physician for their understanding…

I want to send a special Thank You out to Lish for being brave enough to share her journey with us today!!   I wish you luck in all of your endeavors and seeking answers. .  ❤ 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: Shadoegirl19

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Shadoegirl19 was just 16 years old when she learned she had Endometriosis.  Now 48 and living in Michigan, she shares her story with us today…and uplifting encouragement.  Not only was she able to have three beautiful children prior to a hysterectomy, but she, unfortunately, was also diagnosed with inoperable Endometriosis of her spine.  However, she remains incredibly strong and supportive.

Shadoegirl19’s Journey:   At the age of 16 I lost my right ovary to Endometriosis. I had suffered from about 13 (the on set of my periods) until the day my ovary basically exploded from all the endometriomas & scarring. The surgeon had never seen anything like it (lucky me).

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Share Your Story : MB

Text that reads, "I'm not sure what to do and I am terrified of having to start having surgeries again."

MB was 20 when she was diagnosed.  Now 29 and living in Alabama…her pain is back and she’s not sure how to move forward.

MB’s Journey: I had a baby when I was 18. I got married at 19 and then 6 months later started having bad pains so I saw the gynecologist. She did an ultrasound and test and it was a holiday weekend. They called the end of that day saying there was a mass in my uterus and I need to see the doctor after the holiday. That’s it.

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Share Your Story: Lakia

African American woman smiling poolside, wearing a white wrap, holding a glass of ice water, and a stuffed giraffe toy

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…

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