Symptoms

Various symptoms of Endometriosis

Share Your Story: Michelle

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Photograph of Michelle and a man in the hospital

Michelle from Virginia was diagnosed with Endometriosis when she was 36.  Now a year later, she shares her Endo story with us.

Michelle’s Journey:  Hi. My name is Michelle. I am sharing this story to help others with endometriosis. I have a very unique story.

In 2003 I came out of the military with a rare bone tumor called fibrous dysplasia. This was and still is in my pelvis. It’s something I went through many years and it took having my third son to put me in a state of barely walking, getting infusions, many rare surgeries at John Hopkins to get the help I needed to walk day-to-day.

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Share Your Story: Michelle

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Photo of Michelle

Michelle was diagnosed with Endometriosis when 20.  Now 35, and living in La Mesa, California, Michelle shares her Endo story with us.

Michelle’s Journey: My endo story I first got my period at 10 years old. I remember I was still in elementary school, playing in PE when I got my first one. From there, my periods became increasingly more and more painful.

By 15 years old I remember rolling around on the ground in the bathroom, sometimes in so much pain that it made me throw up. I would miss school sometimes but most of the time tried to tough it out. My periods were always at least 7 days long, super heavy and lots of huge clots. I thought that was normal…..I was taught to believe this was all normal.

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Feel Good Fridays!

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Black and white photograph of me on the couch curled up into a ball with cramps

It’s Friday!

And it’s been a weird one.  Grief, and pain, and doubt, and anger, and calm, and sadness, and nothingness, and joy.  Not just because of the failing health of my uncle.  But life in general.  I’ve started writing in a journal again once a day, trying to get it all out without letting it bury me, or those around me.

And it’s helping.

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” 
― Mary Anne Radmacher

The photo above was taken by me during Day One of my last period on May 2, 2018.  Although it is a posed image, it also wasn’t at the same time.  I set up my camera, the pill bottles, the tea, the heating pad, and then clicked the “self-timer” button.  As soon as the shutter released, I remained in that position most of the day.  I wallowed in my pain and sorrow.  The next day, I was able to go to work (still medicated), but able to actually get in my car, drive to work, and function.  The next day was slightly easier.

Whatever we are going through, we will make it.   Today may seem hopeless or dark, but keep putting one foot in front of the other – every day.

And we can persevere together.

Love you guys.  Have a great weekend.  And find that courage to keep moving.

Blogs I Updated This Week:

Have You Seen the Endometriosis Commercials on TV? – the FDA has extended the time they need to review and approve AbbVie’s Elagolix and data regarding liver function testing.

Share Your Story: Kathryn

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Quote that reads "I will never give this despicable disease the satisfaction of beating me...ever...

Kathryn was diagnosed with Endometriosis when she was 30 years old.  Three years later, she found our blog and wanted to share her story with us.  It’s a heartbreaking and devastating tale, but one many of us can relate to.  And she will continue to hold her head high, undefeated.

Kathryn’s Journey:   I suffered a horrible car accident in July almost three years ago. The bruising from the seat belt was so bad it took months to heal. Then, in December six months after the accident, I collapsed at work in crippling pain and had to go to the hospital. There they found cysts on my right ovary and uterus. One week later, my gynie is telling me a protein in my blood that detects ovarian cancer which should be no higher than 2 was 171. The next three months I was in a horrible nightmare of doctors telling me I would need a hysterectomy and chemo and would be fighting for my life. I had to make the agonizing choice of pulling my organs out when it wasn’t really a choice at all… And I did it with peace and as much grace as I could. Another month later, I underwent surgery. When I was awake after the tumors on my ovary had been benign and what it had actually been was severe endometriosis. He cut it out, but refused to remove the pipes causing it. When the surgeon told me it would be back, I sobbed… I don’t know why… But I was devastated. Six months later the pain returned. I had been fully cut open from stem to stern the first time. The second time they did a laparoscopy. And discovered the ovary that had the tumor developed a blood cyst that had engulfed the entire ovary. Worse, my fallopian tube was now being twisted and pulled into the same ovary. My gynie did not realize what he was getting into as the sonogram didn’t show much… But he said my tube should be a twizzler and my ovary a walnut. Mine had become a churro and a softball… Two surgeries, six months apart, with no help or sympathy from my now ex-husband… And they still wouldn’t remove all of it… I wanted to have a child of my own but…. God had different plans for me… It still hurts… And now it’s back. I found Lisa’s blog and was overjoyed I was not alone… That the bitterness and hatred of this disease is shared by many sisters. But I can’t do this any more. I want my life back. My endo was so bad it made a blood test show insanely positive for cancer. And the real kicker is that when I was suing the bastard who hit me in that car accident… My insurance company told my lawyer that it sounded to her like a blessing in disguise… I may never have found out there was a problem if I hadn’t been STRUCK by a car. The cruelest part is her daughter was going through chemo for ovarian cancer herself…. I want the pain to stop. It hurts knowing I cannot have children… And I am devastated when I ask myself “why me!” I had been fine up until that car accident… And since then… I’ve had nothing but pain bitterness and rage… And yet, I march on… Because I will never give this Despicable disease the satisfaction of beating me… EVER.

Words of Advice:  Go to your gynie regularly and make them aware of your symptoms and pain level. Try to exclude as many triggers as possible… I am a migraine with aura sufferer and cannot have hormonal birth control which is one of the best defenses against endo… But do not give up and find a community like this one that offers support and love for all suffering and dealing with this devastating disease. Never let your doctor downplay your pain or your gut feeling. If they don’t help you then find someone who can. Don’t suffer alone… I thought I was alone… But this blog showed me that I really am no less a woman and no less beautiful even if my plumbing is yanked out. And remember… YOU ARE FABULOUS!

The Last Word: Please keep writing and updating your blog. I found it just by searching if alcohol affected endometriosis. You gave me more information about my health than my doctor ever did. Thank you… So much! And I love the blogs name.😊

If you would like to contact Kathryn, please feel free to e-mail her.

I want to send a special Thank You out to Kathryn for being brave enough to share her journey with us today!  You are NOT alone in this, and you never will be again.  You have my e-mail address…and I’ll forward you my phone number.  Please feel free to use both as often as you wish.  Much love.  And sending hugs and smooshes your way.   ❤ Yours, Lisa.

Paper with "tell your story" written on it

And if YOU would like to share your story, I would 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.

Yours, Lisa.

Share Your Story: Dannielle

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Photo of Dannielle

Dannielle was diagnosed with PCOS when she was 16 and Endometriosis when she was 18 years old.  Now 19, she shares her Journey with us.  And she is a loud voice for self-advocacy!

Dannielle’s Journey:   Hello, my name’s Dannielle and honestly even though I’m young I kinda figured there had been something going on with my body.. in addition to endo, I was diagnosed with Polycystic Ovarian syndrome at 16 as well. The initial process was confusing before I had ever been diagnosed with either PCOS or endometriosis, because after seeing multiple medical professionals, some were saying it was PCOS, and some mentioned endo, only to later on figure out I have both diagnoses now.

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Share Your Story: Carole

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A chalkboard with "Finally there was a reason and a name for all my pain!" written on it

Carole was diagnosed with Endometriosis when she was 25 years old.  Now 65, she shares her Journey with us.  And quite a journey it’s been!

Carole’s Journey:   Suffered excruciating pain ever since I started my periods at age 11. Trying to describe the pain, I can only compare it to a vacuum trying to suck my uterus out of my body. I could not even walk, and everybody (even my parents) thought I was faking…Until the day I did not go to a dance because of the pain. I saw a few doctors, who all ordered D&C. Finally (thru a friend’s recommendation to her gynecologist) I was able to get an appointment to see her gynecologist at age 25. He suspected it was endometriosis and ordered a laparoscopy and it was confirmed. Finally there was a reason and a name for all my pain! I was prescribed the painkiller “Talwin” – very strong and I was somewhat “stoned” and even “hallucinated” – which rendered me unable to function for 1-2 days each month at work (better than 7 days of pain without it). Married, I was trying to get pregnant, and even with fertility pills I could not. Exploratory surgery found I had endometriosis that had squished both my ovaries and a lot on my uterus: One ovary removed; then second ovary removed; and finally uterus removed. I was 27 years old. Although most of pain was gone I still had pain with my bowel. At 35 years of age I had 6 inches of my bowels removed as endometriosis was found squishing my bowel. I was so happy to see a commercial on television that talked about it. After all those years people are finally going to believe that ENDOMETRIOSIS is real !!! Thank you.

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Share your Story: Genevieve

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Genevieve wearing a flower crown

Genevieve felt the symptoms of Endometriosis since her first period.  She was diagnosed when she was 21 years old, and is now 28.  She shares her story with us today.

Genevieve’s Journey: I thought I was dying.

I was on a family holiday, lying in our camper trailer bed with my mum and my little brother. I was 12. I think my poor mum, who was a nurse, was at her wits end by sunrise, and had given up trying to diagnose me after an hour or so. The pain in my abdomen had me convulsing, crying and curled up into a ball clinging my legs to my chest for dear life while I rocked back and forth. I was given some Panadol, and while my mum and brother proceeded to sleep, I made the cold, windy walk up the hill to the campsite toilets over a dozen times throughout the night thinking, “This is it. I’m going to be one of those news articles, where a young girl dies a mysterious death in a caravan park”. I remember sitting in the showers in the middle of the night, on my thongs (so I didn’t get butt tinea from the shared bathroom) and just feeling like I should have been at a hospital. But I was so desperate not to cause a scene or be put on to a helicopter in front of the entire Robe Caravan Park.

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Reader’s Choice: Melatonin & Endometriosis

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Generic white pills

One of my readers, Erin, emailed me asking if I could look into taking Melatonin for Endometriosis pain and symptoms.  She had heard that it may help reduce the symptoms, pain, and maybe even the lesions themselves.

So, on goes my Research Cap and it begins!

Melatonin is a natural hormone produced by the body as the light fades.  Many people take Melatonin to help them fall asleep and stay asleep.  It’s been coming out in studies over the past decade that Melatonin may play a role in helping reduce Endometriosis lesions and pain.

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Share Your Story: Shadoegirl19

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Untitled-1 copy

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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