Share Your Story: Michelle

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.

Continue reading

Share Your Story: Kathryn

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: Carole

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.

Continue reading

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

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).

Continue reading

Share Your Story: Erika

Woman smiling with Snapchat filter of cat ears an nose

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. 

Continue reading

Reader’s Choice: Small Endo, But Big Pain?

Bloomin' Uterus logo surrounded by question marks

One of our readers, Jocelyn, emailed me this question:

Hi Lisa,

Thanks for doing this! I was diagnosed with Endo in May 2017. After of course many ultrasounds, bladder scans, colonoscopies… you name it. The laparoscopy in May only revealed 2 very tiny cysts on my ovaries. My doc was able to get a tiny sample sent it off and then after much debate, they gave me the Endo diagnosis. My pain was very severe. I could barely complete normal activities without taking either 800 mg of ibuprofen every 2-4 hours, tramadol, rest, etc. With that being said, my question is even if the Endo is so small can it still cause a great deal of pain? I’ve heard women who have Endo all over their bodies. I tend to question myself because the cysts were so small. I apologize for the ridiculously long response. It’s just been very heavy on my mind. Thanks for listening and all that you do!

Continue reading

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 didn’t do a damn thing. It was like I just ate a skittle to try to manage my cramps, no relief.

Continue reading

Share Your Story: CS

Roses and text that reads "I didn't think I could have Endometriosis"

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.

Continue reading