Feel Good Fridays!

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It’s Friday (already?!?).  This week I am inspired by all of the uplifting and encouraging people in my life.

“Sometimes our light goes out, but is blown again into instant flame by an encounter with another human being.” 
― Albert Schweitzer

If you are feeling worn down, exhausted, defeated – try to find someone who can lift you up, ignite that spark, encourage you to keep on going.  The embers are there…they just need a little encouragement to burst back into flame.

Love, Lisa

Blogs I’ve Updated This Week:

2018 Endo Events – added a March 17, 2018, Endo Awareness Event in Delaware through The Yellow Cape

Share Your Story: Lish

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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).

Back then (1980’s) girls my age didn’t have “female problems”. Every time I had pain prior to the ovary burst they told me & my parents everything from gastric issues to I was looking for attention.

After the true diagnosis I continued to have issues however, I was extremely blessed to be able to give birth to 3 healthy baby girls in between bouts. Throughout the years the problems continued to plague me and I had multiple procedures (ever heard of a Cauldocentisis?? OUCH), surgeries & treatments to try to stem the growth of the disease. I finally made the decision to have a hysterectomy when I was 30. They left my remaining ovary in to save me from having to take HRT or go into menopause so young.

Unfortunately that only lasted for 2 years before the cysts started again and I had to make the decision to have the ovary removed also. After that I went on to HRT and live awesomely pain free for about 12 years until I started to have problems with my hip & sciatica. Of course, I figured it was just my luck to end up with a bad hip after all the years of suffering with abdominal pain. It got really bad after I had a small car accident. Because the pain was so severe (radiating down my leg and causing numbness & weakness all the way to my toes) I had an MRI. When the doctors read it they realized I had a crushed disc and sent me off to a Surgeon. When I went to see him he asked me all the normal questions about my pain and symptoms, did an exam and went to look at the MRI once more.

He then came in and delivered some news I never expected….it wasn’t a crushed disc they were seeing, it was an Endometrial Mass between my spine & my sciatic nerve!! I was absolutely shocked! Worst part was that he advised surgery was not a viable option due to the proximity of the mass to my spine and how badly it was intertwined with the nerve bundle. He said he wouldn’t perform such a risky surgery because the chances of making it worse were far exceeding the chances of making it better.

So, after all these years & procedures, including my complete hysterectomy, the Endo wins again. Now I live with a pain patch and pain pills daily so I can actually walk and have some semblance of a normal life. I refuse to let this damn disease win! I have 3 awesome daughters & 2 beautiful grandchildren to spend time with and I won’t let some pain keep me from being happy! My only fear is that, since 4 of the 5 of them are girls, they will all suffer too. My daughters have each been diagnosed with PCOS and one of them confirmed Endometriosis so far. We knew to watch for it early so we’ve been treating it from early on and, obviously, it hasn’t affected my oldest since she is mom to the 2 grand babies. I pray that someday we can find a cure for this and stop the cycle of pain!

Words of Advice:  Don’t give up!! If you aren’t being heard by your doctor, find a new one! Look for someone who specializes in Endometriosis and get the treatment you deserve. This is a real issue and we shouldn’t be made to suffer for “being a girl”!

The Last Word: Thank you so much for giving us a sounding board and a place to offer support to each other! As women we need to lift each other up!!

If you wish to contact Shadoegirl19, you can email her here.

I want to send a special Thank You out to Shadoegirl19 for being brave enough to share her journey with us today!!  And I am so thankful that you spoke up about spinal endometriosis!  All I ever hear from skeptical readers is “it’s so rare, why do you scare people by posting about it?”  And you, my dear, are why.  There ARE women out there that suffer from spinal Endometriosis and they need to know they’re not alone or crazy. Thank you.  I am so grateful you were able to have three beautiful children and are a grandmother!!  I wish you luck in all of your endeavors.  I am glad that your daughter has such a wonderful EndoWarrior by her side.  ❤ 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.

The Blogger Recognition Award

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*squee* I love these things. 🙂

A fellow EndoSister and Blogger The Dissociated Press nominated me for this wonderful opportunity to tell you how the Bloomin’ Uterus blog began.

As you know, I have Endometriosis.  I was diagnosed back in June of 2014 with this illness I knew nothing about and could hardly pronounce.  My nurse helped me better understand Endometriosis by describing it as sort of a crabgrass that you cut and it can grow back again and again.

I felt disgusting on the inside.  Hideous.  Infiltrated by some alien.

So, I created the Bloomin’ Uterus and a little mantra to remind myself that I was none of those things:

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Then I delved into researching more about the illness.  Why had I not heard of this disease that affects one in 10 women?  What could be done? What caused it?  I obsessed.  And I needed somewhere to write down all of my findings.

I’ve never blogged before in my life.  But I grew up writing in my diaries. So, this was my online diary.  My thoughts and fears and pure opinion.  But that soon progressed into something bigger.

Rather than simply writing about my issues, I wanted to help spread the word about Endometriosis.  I wanted to connect with other women who had it. I wanted THEM to share their stories! AND I wanted to be able to share the books I’d collected and the things I’d learned.  So the blog morphed from an online diary into what it is today.

A place where people can ask me a question, I research the answers, and post my interpretation of what I’ve read.  Am I always right? No.  But that’s the beautiful part about having an illness that has no true black and white answers.

I’ve connected with so many incredible women.  And I’ve learned to embrace my illness; all of it.  Without it, I would never have become the strong woman that I am today.  And I will never stop…

I would like to nominate these fellow bloggers who I find incredibly inspiring in their own ways!   Tell us why you started YOUR blog!!

The Endo The World – Claire ❤ xoxoxo ❤

The Endo Zone – one of my all time favs, Marixsa

Yellow Endo Flower – a wonderful blog started by a woman in Kenya wanting to raise awareness and build a community of Warriors there.

Bloomin’ Uterus on Instagram!

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Well, it’s done!  One of our local EndoSisters from San Diego impressed upon me the importance and outreach Instagram could offer.  But, I myself an sooo not savvy when it comes to technology or these *new* *hip* sites…so, I’ve been resisting.

Luckily, this same Sister, Heidi, graciously offered to set up a Bloomin’ Uterus Instagram account and post on behalf of our group.

If you have an Instagram account and want to connect, please feel free to check out www.instagram.com/bloominuterus or @bloominuterus.

Thank you, Heidi, for all of your help!!!  You’re amazing.  And I *heart* you.

Share Your Story: JH

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JH was 21 years old when she received her diagnosis in 2004.  Now 34, she is living in Minnesota and is in a lot of pain after having three children.  After reading her story, do you have any words of advice for JH?  She would appreciate an email…

JH’s Journey:   I found out I had endometriosis that was considered moderate to severe after having my first child. I went through the Lupron treatments and a laparoscopy to find out that neither can really help. They can help and may for some, but the told me after all of the treatments and surgery that it may not last for any time at all. Since then I have had two more kids and stopped all treatments. My youngest is 5 and I’m considering surgery because I can barely tolerate the pain as it comes more and more frequently. My pain medicine does little to help, but at least I can control when I take it and get comfort for a few moments when I do. After I had my son the pain down my legs and into my back began and it’s very hard to walk some days. I feel helpless and have heard that the surgery MAY help, but there are no guarantees. My stomach even boats around my menstrual with the pain and that causes even more pain. I’m just at a point now where I’m willing to try something that may help to relieve the stress from my body.

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

I want to send a special Thank You out to JH for being brave enough to share her journey and reach out for advice.  And am so grateful she was able to have three beautiful children!  I wish you luck in your endeavors to find relief…and a medical team who knows how best to approach your Endometriosis.  ❤ 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: Lyndsay

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Lyndsay was 32 years old when she was diagnosed with Endometriosis.  Now 37, she lives in Pittsburgh, Pennsylvania, with her beautiful family and wants to share her Endo Journey with us.  Lyndsay is one of the rare EndoSisters whose lungs are affected by the disease!

Lyndsay’s Journey: I always had painful periods as a teenager, and into my twenties. I didn’t really think anything of it at the time.

At age 26, I was in a car accident where I was the passenger. The SUV rolled a few times as the driver had swerved to avoid a deer. We climbed out of the windshield, appearing unharmed. Paramedics checked us out and said we looked fine. I followed up with my doctor since I still felt off a day later, but she also said I seemed fine.

It was a little over a year later, I was working out at the gym and had a strange stomach pain. It got worse as the night went on, and I ended up in the hospital. I waited for almost 8 hours before I saw someone in the ER (my vitals were normal, so I was not deemed to be a priority). When they finally were able to check me out, they did an X-ray to see what could be causing my issues. It turned out my diaphragm had ripped open, and my organs had pushed up into my chest cavity, and partially collapsed my right lung. They asked if I had been kicked by a horse (I hadn’t) or if I’d been in a car accident. I told them I had over a year ago.

My issue puzzled the ER, and they sent me into surgery with 3 different surgeons – a general surgeon, a thoracic surgeon, and an ob/gyn. My surgery took over 8 hours and we learned a lot.

  1. It appeared that my liver had a strange ring around it and they said it was likely that during the car accident, the liver was pushed up through my diaphragm and remained wedged in there for over a year. (Note that during that year, my periods were more painful than I’d ever experienced);
  2. The car accident had left one of my Fallopian tubes crushed;
  3. I had endometriosis in my uterus / abdomen;
  4. The liver being shoved into my chest also damaged my right lung leaving it 10% collapsed for over a year.

I came out of surgery with a chest tube in the right side. After a few days in the hospital, they removed my chest tube and sent me home. My chest filled up with blood after I was sent home, and I had a series of visits where they would drain liters of bloody liquid from my chest.

Eventually, I had another surgery on the right side and a chest tube put in to clear up the issue. I spent weeks in the hospital and eventually they sent me home with a portable chest tube device (it has some German name that I can’t recall). The home health nurse that came to check in on my lung issue / chest tube device wasn’t properly cleaning her tools she used to remove the fluid from the device, and after a week at home, I ended up with a pretty serious infection along the chest tube site.  I was hospitalized again, and after a few more weeks of treatment, and gradually removing the chest tube, I had stabilized.

Fast forward 2 years. In this time, I got married, and was pregnant with my first baby. The pregnancy seemed to be going well until I hit about 20-22 weeks. I was gaining weight normally, growing the way I should be growing, etc until about week 22. I started to plateau. I also had a nasty cough and started to lose weight. I consulted my ob/gyn (I switched to the practice that was involved in my surgery since I thought they knew the most about my medical history). When I voiced concerns about my weight loss, I was told by one of the female docs in the practice that “you are the type of person who doesn’t like to gain weight”…. I told her she was wrong and I was trying to eat the best food for the baby and at this point was drinking ensure to gain weight. She dismissed my concerns.

Things got worse as my pregnancy went on. I lost more and more weight, got short of breath very easily, and after almost going into labor early, was placed on bed rest for a few weeks until I demanded to be seen to check in the baby (the practice was very dismissive of my concerns – at this point, I was puking, had diarrhea, and looked very emaciated). I demanded to have an ultrasound to be sure the baby was okay. I went into the office and was immediately shipped off to labor and delivery to have my baby. Once I was dilated 9-10cm, pushing out the baby wasn’t so bad. I had a horrible cough, but actually my coughing / gagging helped my body to push my son out of my body. He was born in about an hour and was a 5lb 2oz healthy baby boy and I was so happy.

I felt off physically after I gave birth, but was assured that it was normal to feel that way. I would talk and lose my breath for like a full minute. After persistently asking to have someone help me with my cough/ breathing issue, (they tried to send me home telling me I was fine), a doctor in another department saw my history, knew I’d had collapsed lungs before, and ordered a CT scan. So after my 3 wonderful days with my baby, I was told my lung had fully collapsed on the right side and that I’d need to go into surgery to repair it. I was devastated that I wouldn’t get to spend every minute with my new baby, but knew I had to fix my lung. I had the lung repaired, had 2 chest tubes, and was in hospital a little over a week.

Going home was such a great feeling so that i could reunite with my newborn. The cause of the lung collapse was still unknown at this point, but the guess was something related to the childbirth had irritated it. They estimated that if I got pregnant again, there would only be a 15% chance this would happen again.

Fast forward 2.5 years, I was on vacation and it happened to be a period week. I took Seasonique at the time which allowed for only 4 periods a year which I requested due to how painful they were. I was coughing and I coughed up blood. I started googling “coughing up blood on your period” and for the first time saw an article about how some people had endometriosis in their chest cavities, and could cough up blood during their period.

I called my thoracic surgeon to tell this to him. We discussed options for a bit and his suggestion was basically, “if you want another baby, I’d try to get pregnant soon and then I’d get on a birth control pill and not ever take the blanks, but also consult with an ob/gyn”.

A few months later (thankfully) I got pregnant, and actually made it through most of this pregnancy without issue, however I also went into labor early with this one and gave birth to a baby girl. I did dilate up to 9cm and while they were getting ready to deliver, they noticed she was breech, and I had to be quickly sent into surgery to do a c-section to deliver her. During surgery, my ob/gyn noticed a lot of strange weblike tissue in my abdomen. He cut it all out for me, and sent some to be biopsied. It wasn’t determined to have some endometrial implants on it. My daughter was healthy, but tiny. She was 4lbs 15oz, and while we were all sent home from the hospital together, when she went in for her first doctor visit the next morning, her body temp was too low and she had to be admitted to children’s. My husband took her since I was recovering from my c-section and the same night, I ended up in the ER with chest pain. It turned out both sides of my chest filled up with blood.

My surgeon surmised that if I did have endometriosis in my chest cavity (he thought it traveled there after my car accident), that the surge of hormones during delivery most likely caused the crazy bleeding. He suggested a lot of walking (20 min 3 times a day) could help keep my lungs expanded and push out the fluid. After a few weeks of that, my lungs were back to normal. My daughter also was out of the hospital after 5 days. She just had to gain some weight to be able to hold her body temperature. She and I were both home recovering together.

About 7 months later, I had some severe stomach pains and ended up in the ER. They diagnosed me with stomach ulcers. After a few weeks on antacids, I ended up back in the hospital with a collapsed right lung. After 2 failed pigtail catheter attempts, I ended up with 2 collapsed lungs. I had the pleurodesis done on the right and had 2 chest tubes placed on that side and 1 on the left. The pleurodesis is a procedure which irritates the chest wall to make it sticky so that the lung will adhere to the chest wall and not be able to collapse. The left side healed quickly (relatively) but the right side did not. Pleurodesis didn’t work evenly. Another chest tube placement was tried to get the doxycycline into different areas on the chest wall to try to get the lung to stick. It stuck in a strange web-like formation leaving a few pockets of space. One pocket was a part of the lung that still had an air leak.

I was in and out of the hospital over a 6 month period including a 6-week hospital stay and an 8-week hospital stay. I went home for a few weeks with a chest tube unit (the large one that wouldn’t allow for infection). Finally, they decided to remove the chest tube even though leak remained. The lung was stable even though the hole was still there. I was stable with the web-like right lung for 3 years.

Fast forward to daylight savings time one year … I had been taking birth control pills without the the blanks for a few years without issue. I forgot this year to adjust the time I take my pill. I have an alarm on my phone that goes off at 9pm every day. Well a few weeks later, my lung collapsed. It happened just after Thanksgiving. My doctor allowed me to wait out the holidays with my family and come in January to get a chest tube. I was thankful to spend Christmas at home, since I had missed Christmas the year my daughter was born. He tried just the small pigtail catheter in January. It worked temporarily, but I had another collapse in March and opted to do the pleurodesis on the left side. It seemed to work and expected to be the more permanent solve.

I made it until October before having another issue. It seemed as though the very bottom of the lung had come “unglued”. After this repair, I went to consult with Cleveland Clinic in their Pulmonary Medicine Department and also talked to the Head of Thoracic Surgery. They both said that they had nothing new to offer, but confirmed the steps my doctors had taken were what they would have thought to do. In their 20 years at the Hospital, they had only seen 1 other case similar to mine. They explained to me that I most likely had microscopic endometrial implants in my chest cavity. The implants bubble up during a period and then the bubbles pop when the hormone is no longer present. They suggested consulting more with an ob/gyn but also said that once I hit menopause the issue would go away.

Today I am writing this while in the Hospital less than a month from that conversation in Cleveland. My insurance changed my birth control brand to a generic. It had the same active ingredients, so I thought it would be okay. I had break through bleeding, and a week later the left lung collapsed. I had pigtail catheter chest tube installed on the left to suck out the air and allow the hole to heal. I am having my doctor write a prescription that requires me to remain on my current brand of birth control to prevent this from happening. It was encouraging to hear everyone’s stories, and if you can actually make it all the way through my crazy saga, I hope it’s helpful.

Words of Advice:  If you are treating a lung endo issue with birth control, be careful about switching brands and remember to adjust for daylight savings time. Be strong and hang in there. It helps to take it just 1 day at a time and remember every day out of the hospital is a good one.

The Last Word: It’s comforting in a way to know that others have the same issue as me. Every time I tell my story to people, they look so horrified and have never heard of lungs collapsing due to endometriosis. I am happy to have a community of others with crazy endo issues.

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

I want to send a special Thank You out to Lyndsay for being brave enough to share her journey with us today.  And am so grateful she was able to have two beautiful children and survive the ordeals of childbirth and lung collapses!  Lyndsay continues to uphold a positive outlook and attitude, and she is one incredible Warrior.  THANK YOU!  Wishing you luck in switching back to that name brand birth control and, as always, wishing you relief and peace. ❤ 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.

New T-Shirts Are Available!

2018 BU shirts

This year we’re releasing black Bloomin’ Uterus t-shirts.  I received a lot of feedback that people wanted a darker color (to avoid stains and such), so here we go!

Once again, I’m working with teespring.com and they will donate 100% of the profits to the Endometriosis Foundation of America (which comes to about $5 from each sale).  Instead of having a deadline, these shirts will always be available for purchase and will be printed and shipped directly to you.

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There are several styles available to you this year:

Hanes Tagless Tee – $18.00

Women’s Premium Tee – $21.00

Women’s Tank Top – $22.00

Women’s V-Neck Tee – $21.00

Unisex Hoodie – $28.00

Long Sleeve Tee – $22.00

If you would like to place an order, please do so by clicking here, choosing your style(s), and size(s).   Your purchase not only helps spread the word (I guarantee you will be stopped as asked what Endometriosis is) but helps fund the EFA’s efforts.  And you get to wear a very stylish Bloomin’ Uterus *insert grin here*.

I cannot thank you enough for all of your support over the past few years.  You’ve made this Journey so incredible.

Love, Lisa

 

Feel Good Fridays

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Good morning and Happy Friday!  Another week has flown by…

This one goes out to my EndoSisters.  All of you.  But especially the ones that I get the pleasure of sitting with once a month, talking, laughing, crying, enjoying each other’s company.  You truly are my heroes.

“Heroes didn’t leap tall buildings or stop bullets with an outstretched hand; they didn’t wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving. Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else’s. And maybe that one act could lead someone to rescue you right back.” 
― Jodi PicoultSecond Glance

I love you guys.

Blogs I’ve updated this week:

2018 Endo Events Around the World: Added several events in Australia.