Endometriosis: It’s a Real Problem

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A local EndoSister, artist, and good friend of mine, Sarah Soward, created this fun and beautiful little graphic after my recent conversation with a local retired gynecologist.  Wishing more doctors, friends, and family truly understood just what a problem Endometriosis is…

Like the image? Feel free to share it!  Like Sarah says, “We have to talk about the problem in order to solve the problem. ❤

Have a wonderful day!

Yours, Lisa (& Sarah!)

Share Your Story : MB

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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.

So I went to see her and they said it is on the ovary, not the uterus, and they needed to do surgery.

So I had 4 surgeries in under a year were they kept taking out dermoids from my ovaries and they just kept coming back and I was tired of the surgeries. I was weak and couldn’t take any more so I agreed to a hysterectomy and then had emergency surgery for internal bleeding.

Yup 6 surgeries in a year and 3 months.

Well when she did my hysterectomy she said when they removed the uterus she found endometriosis in my back. Her words were after removing your uterus I found something called endometriosis in your back and had to scrape it out. That she did.

Here it is 8 years later and I have been taken on and off hormones and have recently started have bad pains in my stomach and unfortunately the pains in my back and legs never stopped. I didn’t have any type of treatment after the surgery. She said there is no way to get it all and left it at that.

So here I am with an endocrinologist wanting to put me on Premarin and now rethinking his advice being that the endometriosis was so bad in my back. I’m not sure what to do and I am terrified of having to start having surgeries again. I was young and thought doctors knew what they were talking about and put what was best for you first not their getting surgical experience in problems they rarely ever see. I keep hearing of people getting treatment and it helping some but no one around here has said anything about there being a way to treat it.

 

If you wish to contact MB, you can email her here.  It sounds like she could use our loving help and support.

I want to send a special Thank You out to MB for being brave enough to share her journey with us today.  May you find the relief you’re looking for.  Know that you are NOT alone…and you can feel free to email me (here) at any time to talk.  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.

Feel Good Fridays

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IT’S FRIDAY!!!  A somber one for me.

Garth Stein wrote, “He died that day because his body had served its purpose. His soul had done what it came to do, learned what it came to learn, and then was free to leave.”

Twenty years ago today, my Gramma Tilly passed away.  Two days later, Grampa followed her and left us as well.  I like to think he died of a broken heart.  I was 17 years old when two of the most important people in my life were suddenly gone.

Not a day goes by that I don’t think of them. in some aspect.  They were quirky.  They were wonderful.  They were loving.  Yet they were also a bit on the “grrrr” side if you stepped out of line.  They yelled at each other.  She had this incredible laugh.  You would wake him from a seated nap to him defending, “I wasn’t sleeping – I was inspecting the inside of my eyelids.”  She smelled funny.  He liked his Blackberry Brandy beneath his desk.  She left the butter and mayonnaise out on the counter all the time.  They loved their Jeopardy, Bob Ross, and Wheel of Fortune.  Every morning on my walk to school, she’d poke her head out the door, waving and shouting, “Have a good day, Leesee!” And oh how the family got together to play cards. ❤

I’m so grateful they lived next door when I was growing up.  I truly got to spend a lot of my influential years with these two characters.  And I love them still. Oh, so very much.  And they loved each of us.

Walter & Tilly.  Truly loved, forever missed.

Embrace those that you love today.  Have you lost someone?  Honor them and share your favorite memory in the comments below. I’d love to hear about them. ❤

The San Diego Sisters were at it again!

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Some of you may have been around last year when we blogged about the San Diego Sisters of Perpetual Indulgence‘s Endometriosis fundraiser (you can read about it here).  Well, they did it AGAIN!

Shooters Cocktails, The Sisters, Tanya Linda, and the band Strangley Strange got together on January 28, 2017, for some birthday fun, music, drinks, and FUNDRAISING for the Endometriosis Foundation of America!  And this year they raised $115.75 for the E.F.A.!

Sister Donatella Soul let me know many of the patrons of the bar, including men, donated to the cause – having family members of their own that have suffered with Endometriosis. Even the members of the punk band Strangley Strange donated out of their own pockets!  Thank you EVERYONE!

If you’d like to see all of the photographs from that evening, please click here.  Thank you Richard Reyes for allowing me to post your photographs. ❤  Thanks to Sister Donatella Soul, and all of the Sisters with the San Diego Sisters of Perpetual Indulgence, for going out there, spreading the word, and raising funds.  And thank youuuu (and happy belated birthday!) to Tanya Linda for opening up her heart toward the cause and making her birthday event a fundraiser event! ❤

You guys are all awesome!

Love you!

Feel Good Fridays!

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Happy Friday!!

Today’s quote is by American author, Richelle Goodrich:

“Every sunrise is an invitation for us to arise and brighten someone’s day.”

Be kind to those around you.  Strike up a conversation with a stranger.  Say “hello” when passing someone. Smile.  Hold open the door.  Offer a homeless person a bottle of water, an apple,  or a $1 or $2.  Reach up and get something off a high shelf for someone obviously reaching for it.  Ask someone how their day is going…and truly listen to their response.

Get out there and make someone’s day!  And happy Weekend!

This week we updated the following blog entries:

Bladder & Endometriosis – added Jan. 2017 European Urology article; added Jan. 2017 International Surgery Journal article

Bowel & Endometriosis – added Jan. 2017 Fertility & Sterility article

C-Section Scars & Endometriosis – added Jan. 2017 Journal of Midwifery & Reproductive Health article

Yours,

Lisa

Free Endo Webinar: Dr. Sonia Rebeles

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Are you available to attend a free webinar on February 15th at 7pm PST? We’ve had the pleasure of interviewing Dr. Sonia Rebeles in the past for our blog (you can read it here) and now the Endometriosis Family Support Group is hosting a webinar featuring Dr. Rebeles! Registration is free, but mandatory!  Please email Erin with the EFSG at Erin@RMCcharity.org to sign up!

I’ll be watching that evening from the comfort of my living room! Will you?