Feel Good Fridays

 

Where has the week gone?

Happy FRIDAY!

Today’s quote hit me in the gut.  And it’s something I truly strive do it…moreso as I get older.  You begin to value the things that truly matter to you…

“Live your life. Be happy as you can be, let go of the things that don’t matter, and fight.” 
― Kiera Cass, The One

May you do this, and do it well. For you.

Have a beautiful weekend, my friends.

Love, Lisa

Feel Good Fridays

2018 group picture

So another Friday is upon us.

I’m sharing this quote a little bit later than normal because I was scouring through pages and pages of quotes until one hit me.  And this one did.  Right in the Feels.

“Surround yourself with people
who don’t just ask
how you are doing.
Surround yourself with people
who make an effort to 
make sure they are part of
the reason you are doing so well.” 
― Jennae Cecelia, Uncaged Wallflower

Now go back and read it again. Slowly. Let it sink in.

And take it to heart.

Live it. Love it.

For those of you that surround me, I know you love me and I know that your intentions are pure and your words are sincere.

I freakin’ love you guys.

Have a wonderful weekend!  Love, Lisa

 

Blogs I updated this week:

Dungeons & Dragons & Donuts – added our September session, where we meet a new party member: Brinn, the half-elf ranger.  We also start our trek to retrieve the mythril cube (and hopefully save our hands)!

Support Group – on November 10, 2018, we’ll be having our support group meeting at Casi Cielo Winery! If you’re available, come join us!

Share Your Story: Mollie

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Mollie was diagnosed with Endometriosis when she was 20.  Now a year later, she shares her journey with us.

Mollie’s Journey: It all seems full circle to me after about 7 years.

At about 13 is when I got my first period and my symptoms began to start at 14 from what I can remember. What I do remember vividly is the pain, daily. My mother thought I was just trying to skip school because the only thing I could explain to her was that my tummy hurt. Any mother would think that a 14-year-old that complains of a “tummy ache” almost everyday is just trying to get out of class so I can’t blame her for any of that.

She took me to a doctor after some time to see if I had an dietary issues and the doctor concluded I was lactose-intolerant. I tried that for a couple of years, of course never worked. My mom figured maybe they were my cramps beginning to start so at the ripe age of 14, I went and got birth control.

At 16, I ran to my sister’s room to tell her that I was really starting to be in pain when I went to the bathroom. She told me that was normal, I probably had gotten a UTI and that she had one before, it was no problem. Pretty soon I was getting UTI’s and yeast infections monthly or so I thought. I went to my primary care doctor, they prescribed me antibiotics. Still happened monthly.

I then went went to my gynecologist, she decided to put me on a different BC. Didn’t work. I explained to her how bad my cramps were getting even in between my period. Cue ultrasounds for cysts! Nothing showed up. Through 4 doctors, painful examinations, and countless “it’s normal for a girl your age”s, I kept going, hopelessly.

At 18, I went to college that came with new doctors and questions. By this time I had been “diagnosed” with chronic UTI’s. Finally, I went home over a weekend during my junior year where I met a new doctor. She asked me if I had ever hear of Endo. It was the first time the word ever left my mouth and now it’s part of my everyday vocabulary. I will never forget that meeting. She spat out all the worst case scenarios that happen to women with this disorder.

The gynecologist I had seen since I was 14 decided to do my laparoscopy before I could even call my mom. I told them I needed to talk to my parents. I got a call the next day that my surgery was scheduled for 2 weeks later! I have midterms?! Of course the first thing that crossed my mind because I had no idea what was going on. Google was my friend at the time and oh how scared I got in a short amount of time. I told my dad who consulted friends to find me a second opinion.

The next doctor confirmed and proceeded with my surgery and did a Endometrial ablation. Surprise surprise! I was back almost every week following the two week mark of my surgery.

This is where I felt crazy. My doctor told me she had sorted it out. That it was done. The endo was gone. The pain is in my head because I had some sort of PTSD. I told her I was worried about kids. She told me I needed to see a therapist. I told her it feels no different. She told me my body wasn’t “used” to it yet. I was horrified. I left the doctors office wiping tears from my face.

That’s when I found Bloomin’ Uterus and this wonderful support group along with Nancy’s Nook. I decided to schedule an appointment with Dr. Orbuch. She truly has been my angel in the dark and erased my resentment of myself. I cried tears of happiness in her office as she looked over my medical records. She explained to me that my Endo was very much still there and that the ablation had a “plastic melting” type of effect. That my pain was normal. That I need to go see a fertility specialist. That I need ultrasounds and physical therapy.

Most of all she gave me hope.

Two appointments later, I have been officially diagnosed with Endometriosis, Interstitial Cystitis, and Pelvic Floor Dysfunction. I know have excision surgery scheduled for December 11th and couldn’t be happier!!!

Words of Advice:  Trust yourself and your body. You know it better than anyone else. There will be many doctors, family, friends, and strangers that try to downplay everything you are feeling but you are a warrior.

The Last Word:: Most people will say I am too young to be vulnerable on social media talking about the female anatomy and to be in a support group but I think that is where my strength comes from. If anyone at all needs to talk to someone, I am always here!

If you would like to email Mollie, please feel free to do so here.

I want to send a special Thank You out to Mollie for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your upcoming surgery!  And please let us know if you need ANYTHING during your recovery ❤

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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: Diane

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Diane shares her Endometriosis journey with us today.  And she’d like to remind us all when life hits us too hard and we’re stuck or immobile…we have to start somewhere. One step at a time.

Diane’s Journey:  So, I’m officially diagnosed with chronic pelvic pain, recurrent peritoneal cysts, and precancerous cervical cells. I did have an exploratory lap in 2016, to remove suspected ovarian cysts. They turned out to be peritoneal, and I also had “extensive adhesive scar tissue”. Endometriosis was added to my records at that point, but I was seen at a teaching hospital. The residents that saw me and performed my surgery never sat down and discussed what they found.

I went back to work, happily unaware. I thought since the cysts and adhesions we’re gone, my pelvic pain was through. For context, I work as a CNA. 8 hours on my feet running from room to room and lifting human beings bigger than me. It took two weeks back to realize I was mistaken.

So, back at home, trying to focus on my kids, home, and health. In between the year and a half of appointments with residents, different ones with different opinions each time, I fell into a good old fashioned depressive episode. I hurt all the time, I was trying to take care of two special needs children (my daughter has ADHD, severe anxiety, and a fine motor skills delay, and my son has cerebral palsy), trying to keep up with the housework, and missing the adult socialization and feeling like I actually contributed to society.
I started working with a counselor after being diagnosed with adult ADHD and major depressive disorder. In the middle of all this, I had an abnormal pap. Went back for the colposcopy, thinking nothing of it. Not my first rodeo and usually the colposcopy came back negative. This time it didn’t. One LEEP procedure later and I was being referred to a new gynecologist for a hysterectomy consult.

I now know that the hysterectomy won’t cure my endometriosis, but it will stop the recurrent peritoneal cysts that my new DOC says are fed by my ovaries putting off estrogen. It will also drop my risk of cervical cancer to zero, as the cells are still just on my cervix.

I’m scheduled for next month. I’m having a total abdominal (darn scar tissue, again) with removal also of my ovaries and fallopian tubes. I will be in menopause at 34 years old.
I am also working through a not quite midlife career change. I’m going back to school to be a special education teacher.

So, endometriosis and related conditions have changed my course, but they’ve also pointed me towards my passion. Don’t get me wrong, I love taking care of people, especially my geriatric patients.

But I’ve worked with special needs kids for years, and now have my own personal experience to bring to the field. Teaching will be a less physical job for me, but I believe a more rewarding one also.

**

If you would like to email Diane, please feel free to do so here.

I want to send a special Thank You out to Diane for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your upcoming surgery and recovery! Please keep us posted.

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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!

fridge poetry

It’s Friday!

I started the day with low tire pressure in my rental car, so there was an impromptu trip to Hertz to have it looked at (it was the cold weather that affected it)…

Then followed that up with my Friday Morning Tradition: a bagel and hot cocoa from my local bagel shop.

And now I sit, the work day is juuuuuuust about to begin, and I’m at the tail-end of the Sniffles Head Cold (which I’ve had all week).

So what the heck shall we quote today? I don’t know yet…let’s go on the prowl for something that speaks to me!

…standby…

“Poetry is heart medicine.” 
― Marty Rubin

It’s so simple. But it’s true.  Find some time this weekend to sit down and read some poetry. Perhaps favorites while you were growing up, or explore new titles and pieces.  Whatever you do, find something and share it here in the comments below.  I do love poetry!

Have a GREAT weekend

Love, Lisa

PS – one of my favorites growing up?  Curfew Must Not Ring Tonight by Rose Hartwick Thorpe

 

Blogs I updated this week:

Dungeons & Dragons & Donuts – our August session included a hearing in front of a tribunal…as our party had to justify their actions to the law.

Share Your Story: Pam

Untitled-1 copyPam was diagnosed with Endometriosis when she was in her 40s.  Today Pam is 59 years old and shares her story with us.

Pam’s Journey:  Long story short, I have 4 grown children after years of infertility followed by 6 miscarriages. I was diagnosed with endometriosis and opted for partial hysterectomy in 1999 due to the heavy periods. I thought that was that.

Fast forward to September 2018, and last week I had my ovaries and tubes removed. I was shocked to hear I had endometriosis plastering my ovaries to my pelvic wall. Now as I am researching I am reading that it is possible that the undiagnosed leg pain I have been suffering with for over 8 years may also be related!

I am not in the medical field but am pretty savvy, so much it is rare that I go in and am not asked if I am a doctor or nurse. My kids and I have had lots of issues and I have been there with them for every step.

So how could I be so ignorant on this?!!

I have seen every kind of doctor you can imagine. I take an epilepsy drug for bilateral pain on the outsides of both lower legs. The last Doctor said just be happy you have a drug that works and stop looking.

I am praying as I heal from surgery, my pain in my legs will go away.

Words of Advice:  A hysterectomy doesn’t resolve endometriosis. I guess I was naive in 1999; were the doctors also?

The Last Word:: Don’t listen to any doctor that says stop looking! I am going back to every doctor if my pain resolves, after I give GOD all the glory, and telling them it was endometriosis, and don’t forget to ask about that!!!

If you would like to email Pam, please feel free to do so here.

I want to send a special Thank You out to Pam for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your ongoing recovery! And, yes, if your pain doesn’t resolve – keep pushing for answers.  They’re out there somewhere!  And if it DOES resolve…absolutely give God all of the glory.  Please keep us posted.

I am so sorry it took me so long to share your post… and I hope you’re doing well!

 

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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: Ami

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Ami was diagnosed with Endometriosis when she was 47 years old.  Now a year later, she shares with us:

Ami’s Journey: One year ago I experienced a worsening pelvic prolapse (following a uterine prolapse years ago) and simultaneous debilitating sciatica. All doctors insisted the two were unrelated. Although muscle atrophy contributed to both. I underwent several months of physical therapy and 2 epidural steroid injections to treat the sciatica and then prolapse repair in December. During that Davinci procedure, the surgeon (said in passing) that he removed some endometriosis. I have recovered well, am stronger than I’ve been in years, but still have sciatic symptoms that seem to be increasing. I am starting to wonder if endometriosis has anything to do with it all. Thank you for your writing. I will bring this up with my gynecologist and ask some questions of the Urogynecologist who did my surgery. Ami

If you would like to email Ami, please feel free to do so here.

I want to send a special Thank You out to Ami for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your ongoing treatment.  And, yes, Endometriosis may very well affect your sciatica or surrounding nerves and muscles.  If you haven’t already found them, we have several blog entries addressing it.  Please let me know if I can help in any way!

I am so sorry it took me so long to share your post… and I hope you’re doing well!

 

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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: Daniela

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Daniela was diagnosed with Endometriosis when she was 22 years old.  Two years later, she shares her Endo journey with us.

Daniela’s Journey:  Hi everyone, my name is Daniela and I was raised in a small town near the border in Mexico and I am 24 years old. I had my first period when I was 9 and I remember that day like it was yesterday because it haunts me. I remember the face of my mom and grandma as if I was going to die. My childhood was over at that moment my body started to change drastically.

Since my first period the pain was something unbearable, I remember going to the ER every time I had my period. Nothing helped so when I turned 13 years old my mom decided to take me to a GYN and to our surprise I had a bunch of small cysts in my ovaries which were causing me so much pain. My doctor at that time decided that I was too young for any treatment or surgery and that I could bear with the pain until they were big enough for surgery.

I went on like this for years until finally I went to the right doctor and the minute I said my symptoms he started the paperwork for a laparoscopy. I had 4 cysts, and one “chocolate” cyst in one of my ovaries, and a crazy amount of tissue growing everywhere. After surgery everything went downhill for me, he prescribed me with Depo Provera, the side effects where horrible I had constant migraines and I wasn’t feeling like myself anymore. They stopped the treatment and I went on to continuing birth control pills. They worked!

And I was so happy everything was going great until after 6 months the pain was back and it was worse than ever I could not walk, eat, work, I was miserable.

My last option since I’ve tried everything was Lupron, induced menopause. Bodies react to treatments very different but in my case it was hell, the migraines were back, the pain, the hot flashes and I was emotionally unstable. After almost a year of the treatment I decided to stop, my body needed a break from all the chemicals.

I started on the pill again…

but I feel hopeless,

I feel no one understands what we go through and how exhausting it is to hear doctors tell me to change my career to something easier,

to change my life completely and I get it

but I don’t think I am ready to give up everything yet.

I am running out of options and I don’t know if a second surgery would even help…

Words of Advice for Us:  Don’t give up!! In my own experience, I cope with my pain and anger towards this disease by focusing on my friends, my boyfriend, and my career. I chose I very hard major (Architecture) as I’ve been told by a lot of doctors, but it is the only thing that keeps me going. Find something that motivates you.

If you would like to email Daniela, please feel free to do so here.

I want to send a special Thank You out to Daniela for being brave enough to share her personal story, struggle, and victories with us today.  I am sorry to hear your pain has returned.  But, in my non-medical opinion – if you can find a physician to do an excision surgery, a second surgery may help!!  My track record is an excision surgery every two years…If you need anything…ANYTHING…you reach out to me here, hun.

I am so sorry it took me so long to share your post… and I hope you’re doing well!

 

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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.