My 4th Endo Excision Surgery

"Uterus & Guts," created by Ivy Denton
@deathwindchimes 

Before I get started, let me explain the image above. A talented artist by the name of Ivy Denton (@deathwindchimes) created it for me (she also created the EndoGuy and PoopChuteSnakie you’ll see below). She’s taking commissions if you’re interested in throwing ideas her way! “What is it,” you may be asking yourself. It’s a whimsical interpretation of my insides: a uterus with two cervix, no fallopian tubes (hence the band-aids and floating ovaries), and it’s accompanied by it’s new buddy: an intestine missing some pieces. I think it’s adorable! Thanks, Ivy!!


On with the good stuff! If you didn’t already know, back in July of this year Dr. Kurtulus discovered a pair of Endo lesions on my small intestine. He brought in a colo-rectal surgeon, Dr. Schultzel, to look at it and decide if we could remove it then. Unfortunately, it was deemed too deep and risky without a proper bowel prep and a future resection would take place.

On November 26, 2018, I had a tag-team surgery for my Endometriosis. Dr. Mel Kurtulus once again performed my excision surgery and Dr. Matthew Schultzel performed my bowel resection. This took place just four months after my last excision surgery. The procedure lasted about four hours and went without a hitch. I remained in the luxury resort…I mean the Prebys Cardiovascular Institute at Scripps Memorial Hospital for three nights/four days while I recovered.


The Bowel Prep

This was my very first bowel prep. Ever. And I was terrified of so many things. I’d heard horror stories about the taste of the prep, and equally horrifying tales of the aftermath.

I was prescribed Suprep, which of course my insurance refused to cover. If that ever happens to you, get a manufacturer’s coupon off of their website and bring it to your pharmacist. It certainly knocked a bit off the price for me!

Honestly, it didn’t taste that awful…kind of like a salty grape-flavored 7-up. But ugh it was still rough to get down.

35 minutes after I downed my first big dose of Suprep…and the torrential downpour had begun. Over the next 2 hours, I pooped a total of 19 times (I’m sparing you the details, but kept a detailed log; no pun intended). Most of it was liquid and sometimes I couldn’t even leave the toilet in between craziness.

My colo-rectal surgeon also had me on a regimen of ClearFast, to help not only keep me hydrated during the process but to make for a faster/easier recovery after surgery.

Then at 10pm, I took my 2nd dose of Suprep. It took about 30 minutes to take effect and over the next hour I poo’d liquid 13 times. At 11:30, I dragged myself to bed. At 4:00am, I woke up to take my prescribed ClearFast and learned that Suprep was still in command. I pooped again 5 times over the next hour. And when we got to the hospital, I poo’d liquid again twice before surgery (once in my surgery cap ‘n gown)! I was scared that the clear liquid-pooing would keep them from performing my surgery since I was obviously still voiding. Nope! The show must go on!

The Bowel Resection

After a few months of working with my insurance and getting Dr. Schultzel specially-approved for my surgery (even before he was in my insurance network), the day was here! I endured the prep and I was ready!

My Mum came with me to the hospital and my husband had to work, we met the smiling faces of hospital staff who have remembered us from previous surgeries, AND I had my favorite nurse help me during pre-op setup. Fist bumps, hugs, and cheek-kisses were exchanged all around the pre-op area as they wheeled me out of the room. Have I mentioned how much I love this hospital? They’re like family!

I digress: back to the surgery!

Previously, the endo was spotted on my terminal ileum, which is the area where the small intestine meets your large intestine ( X marks the spot on the picture below). At my request, my colo-rectal surgeon was also going to remove my appendix due to the close-proximity of Endo and the chance that it, too, may be affected. He was also going to inspect and possibly remove any portion of my large intestine that may also be Endo-laden (see the red square below). He ended up doing JUST that.

There were a total of five incisions (1 on my right side, 3 on the left, and a larger one at my bellybutton). I was given a TAP block injection while I was under anesthesia to help with my post-op pain. And in went the camera…

Dr. Schultzel spotted the Endo lesion on my terminal ileum right away, then saw more lesions on my cecum (kind of the bottom right portion of the large intestine) and near my appendix. He also saw a lot of pelvic Endometriosis, but knew Dr. Kurtulus would be handling those nasty buggers.

This is where things get exciting! When I learned I’d have my guts stapled together, I envisioned a big ol’ heavy-duty office stapler. BUT a surgical stapler, especially a robotic stapler, is waaaay cooler! It sort of cuts and seals at the same time with a row of tiny little staples. If you’re familiar with sewing, imagine a serger machine. Zip & slice! One neat little package. I have no way of knowing how many staples still reside in my guts, but I imagine a lot of little teeny ones!

If you don’t want to imagine, you don’t have to: here’s a Youtube video (not mine) of another surgeon using a robotic stapler during a surgery (fast forward to the 0:44-second mark) https://www.youtube.com/watch?v=wSxiTZwdUFA

So, Dr. Schultzel removed my appendix, my cecum, a portion of my large intestine, my terminal ileum, and small intestine. All in all, it was a little over 7 inches (18 cm) of my guts. The stapler system was used in all areas where my guts were removed.

My small intestine was reconnected to my newly-constructed large intestine and that connection now lives over my liver, near the right of my bellybutton. Then he wrapped that little newly-formed gut-intersection in a flap of my omentum (a fancy term for a fatty, fleshy organ that sits near the stomach and is kind of like a draped apron) – imagine a little poopchute burrito or taco near my bellybutton. 🙂

Dr. Shultzel then passed the controls of the Da Vinci over to Dr. Kurtulus (see The Endo Excision below). Once Dr. K finished removing any Endo and adhesions, Dr. Schultzel continued to work his magic. He pulled out all of the cut-out bits through a hollow tube placed in my bellybutton incision (called an Alexis wound retractor), stitched, and glued me up.

Alexis Wound Retractor; photo courtesy of Applied Medical

My incisions are definitely larger than surgeries-past, but so much more was done. After reading about the Alexis Wound Retractor, now I understand why my bellybutton incision is roughly 2 inches long!


The Endo Excision

Awww, Endometriosis. It loves me so much it keeps coming back to visit. With it being just four months since my July wide-margin excision surgery, we weren’t expecting to find much, if any. Dr. Kurtulus was there to inspect under the hood just to be safe while I was already under the knife for my bowel resection. A wonderfully, perfect coordinated effort. Boy, were we in for a surprise.

He found newly-formed adhesions on my left side, which involved my left ovary and abdominal wall, more along my peritoneum lining, as well as new adhesions that had begun to smash my bladder back down. He also found Endometriosis lesions “all throughout the pelvis.” They had grown back on my right ovary, my right ovarian fossa (where the ovary hangs out), my Pouch of Douglas, the uterosacral ligaments, near my bladder, my left ovary, and the left adnexa. And, as is customary, an Endometrioma (the chocolate cyst) had formed again on my left ovary. Always my left ovary!!! Even after just four months…*sigh* But…”the rest of the pelvis and abdomen looked clear of endometriosis lesions.” Yay!

He removed all of my Endometriosis lesions with wide-margin excision. He also removed the Endometrioma (he saved my left ovary) and he cut away all of the adhesions that had formed. He also, as is our custom, performed a cystoscopy to look inside my bladder for any Endo or abnormalities: pink, healthy, and all normal! And for the first time in a few surgeries: no Endo on or around my ureters!

Everything that was removed: the gut-bits, the Endo lesions, the adhesions, and Endometrioma were all sent off to pathology. This was the longest pathology report I’ve ever received: a total of seven pages! And it confirmed the presence of microscopic Endometriosis on my appendix. I’m SO grateful the surgeons and insurance all agreed to preventatively remove it.


The Recovery

My Mum, husband, and friends who saw me after surgery said it appeared to be my easiest one yet, in terms of how I felt during recovery. I, on the other hand, felt it was my hardest.

Four days in the hospital: my Mum stayed with me every day while I was there (I love you, Mum!!), my husband would visit after work, both of my surgeons visited as often as the could, and the nursing staff were freakin’ amazing!

During my stay, I was given a cocktail of Tylenol, Gadapentin, and Celebrex to manage my pain. I was offered Tramadol (100mg), but didn’t want it since I already don’t like taking my 50mg Trammy at home. But the cocktail did well and pain was minimal. If memory serves me correctly, I threw up a few times the evening of my surgery (likely related to anesthesia) and became intimately familiar with the hospital-issued throw-up bags.

My surgeon and hospital staff encouraged me to get up and walk the halls as often as I could muster. Not only would this help keep me limber and young (Ha!), but it would help get my bowels workin’ and tootin’. Those long walks around the 5th Floor wing were fun: I stumbled across my surgeon on one of those walks, as well as my best friend, Rosie, and my husband escorted me down the halls a time or two!

I remained on a liquid diet until I farted…late the evening on my third day. Very long days of nothing but soup and jello. But that fart? Which was AWESOME because not only was my Mum’s face epic and unforgettable when I tooted, but all of the nurses were just as excited as we were, AND I was served a small meal of soft foods (diced chicken breast never tasted SO good!). Mum and I even had a laugh keepin’ track.

The next late-morning, I was able to poop (if you can call it that…I’ll spare you the details, but I hope my Mum is laughing when she reads this) and Iwas merrily discharged on Thursday, November 29, 2018.

There were bouts of the dreaded shoulder-gas pain, both at the hospital and at home. A few of them were scream-inducing memorable. And those are the worst moments I remember. Sneezes, coughs, and vomiting were equally unpleasant. As well as trying to get, and remain, comfortable for sleeping. When I got home, I mostly remained on my Tylenol pain management, with the exception of 1 Naproxen Sodium and Two Tramadol through the duration of 2018.

I was off of work for six weeks. And got a little better every day. I kept a running tally of milestones:

  • 11/28/18: Released from hospital and finally at home
  • 12/4/18: I can raise my arms above my head without feeling like I”m pulling my guts out of my incisions
  • 12/8/18: First sneeze since surgery: one sneeze, two sneezes, three sneezes!! SOOO PAINFUL!
  • 12/14/18: I can blow my nose without my guts hurting!
  • 12/17/18: I still can’t bend down and wash my feet, and it’s been 3 weeks since surgery…so I got a pedicure at a local salon. There was some disgusting dead skin!
  • 12/19/18: If I use the handrails, I can walk up the stairs like a normal! Slowly, but normal!
  • 12/20/18: I walked the entire mobile home park! It took over half an hour, but I did it!
  • 12/27/18: I drove!!!
  • 12/29/18: I lasted 10 days without needing to take a pain pill!
  • 1/3/19: I laid down on my side for just a few minutes! Soon: no more back-sleeping!
  • 1/7/19: I’m back to work!!!
  • 1/9/19: I can lay down on my stomach! Albeit for just a few minutes. But still!!
  • 1/17/19: as a fun note: bending or squatting or sitting for long periods still becomes very uncomfortable. So…I haven’t shaved my legs since before 11/26! Bwuahaha.

I cannot tell you how much better I feel since before my surgery. I haven’t had any of my pre-surgery pain. Not one! My bowel movements are (99.9% of the time) pain-free. The constant pain on the right and left sides of my lower abdomen are GONE. My December period was light and cramp-controlled with Ibuprofen. My back pain is gone. And I poop ALL the time.

And…I’m a pooping machine! I compared the first week of November poops to my January poops, both the frequency and the pain levels. My jaw hit the floor:

I now eat six small meals a day, instead of three large ones, to accommodate my new bowels. I also have severely restricted my alcohol intake. Where before I could enjoy 2 or 3 beers in a sitting, I can now only have one. Same goes for wine or cocktails. More than that and I’ve noticed I’m severely dehydrated and my gut’s not happy for days. So, I’ve become the ultimate cheap date: appetizer menu and one drink. And it’s been a marvelous trade-off.

I’m super grateful to my Mum for being with me for a week while I recovered. There’s just something so special about the healing energy of a Mum. And to my friends who came to take care of me after Mum left: thank you. ❤


The Bills!

Nobody’s favorite part…the money!! This has been my most costly surgery to date; not only because of the two surgeons involved, but the hospital stay after surgery! And my bills are still rolling in:

$224,476.41Hospital Facility Bill Insurance Payment Pending
$1,687Gyno Surgeon Bill Insurance paid in full
$2,082.19Pathologist Bill Insurance Payment Pending
(Pending)Colo-rectal Surgeon Bill
Insurance Payment Pending
$3,000My co-pay(I’m still waiting for my bill)
$231,245.60Total(updated 1/17/19)

Surgery Photos

Before I share all of the surgery and recovery photos, I wanted to share the photo I found the most amazing.

Back in July, Dr. K took a photo of my bowel with the 2 pink & red Endo lesions. In November, those same splotches had turned BLACK. In a matter of four months, the disease altered that much. I know that lesions come in a broad range of colors…but I didn’t realize they changed color or shape once they were formed! Nor so quickly! So, we’ll start with that! Be flabbergasted with me 🙂

But here are the rest of my surgery photos I received at my post-op appointments (click on them to enlarge):


Recovery Photos

Mum took a lot of photos while we were in the hospital (but funnily enough…none of her!). Here’s the Hospital Shenanigans:

And here’s a slideshow of my incisions from Day One to Week Seven!

If you’ve made it ALL the way to the end of today’s blog entry, you have my applause!

I’m eternally grateful to both my skilled surgeons and their staff; the insurance crew who expedited the approvals through the system; my Mum, my husband, my Seester, and my friends for not only helping me, but putting up with my grumpy-recovery BS; as well as my employers and my co-workers for allowing me to do this second surgery this year. 2018 was one hell of a ride. And this surgery could not have gone any better without each of you.

Let’s hope there’s no need for future surgeries!


Share Your Story: Mummy

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“Mummy” was 29 when she was diagnosed with Endometriosis.  Now 32, she shares her journey with us.  Mummy lives on the island of Antigua, and faces the struggles of limited options when it comes to healthcare.

Mummy’s Journey: I started getting horrible pains when I was around 25 years old and I did not realize what it was because I always took Advil painkillers.  They did help but I realize after my period was finished I was still feeling pain and my legs, I couldn’t walk, and just feel too tired.

You can say I visited all the Doctors mentioned in your blog. Dr. Roberts was the one who told me I might have endo. I did not know anything about the disease she said to do some research; I did. I felt like she was not helping me just putting me on contraceptives and I have to spend a lot of money every time I visited her. She would perform ultrasounds every time I visit which was pretty often and said she had not seen any cyst or fibroid at the time. I decided to stop seeing her because I felt that she was not understanding to my pain and so I traveled overseas to another Caribbean island where I saw a Doc.

He examined me and I did a few tests. I had a cyst on my left ovary. I could not stay on the island as I lived and work in Antigua. The Doc told me they had to monitor it (cyst) for three months.  Of course, I couldn’t stay so I came back to Antigua.

I saw Dr. Wynter and Dr. Mansoor I felt that they could not help me.

One day a friend of mine told me that Dr. Dean Martin was on ABS talking about the Endo.  I decided I was going to make an appointment to see him, in which I did and he told me after examining me with the pains I had, a laparoscopy was the best option to see what’s happening.

I did the surgery (four hours) of course he told me I have stage four endometriosis and a cyst that had ruptured.

I was placed on sick leave after recovery the pain definitely did not go away I had longer periods and worst pain the only good the surgery did for me is that I could have sex without feeling so much pain during or after sex. I felt like I paid a lot of money and was still in so much pain.  My job wrote me a letter to say I am always sick and they would reconsider my employment with them because I would always call sick. I was working with this prominent Security Firm and even though I worked there for 8 years and informed my boss personally about my condition it did not matter to him.

I would overdose on the painkillers so that I would not have to deal with the pain by falling asleep. My doctor told me I should not wait to have children because of the endo, I just felt so lost and I would just stay in my house and I did not want to come out to socialize with people or anyone. I would lay on my bathroom cold floor just to get relief. Somedays I feel like ending my life until I met this wonderful herbal doctor, Dr. Elra, right here in Antigua. I was feeling so much pain I end up at ER and my friend told me about him and I went and visited him he is amazing.  God is truly awesome.  Diet, plus colon cleanse and medicine healed me less than a month. I do not feel the pain, I am totally pain-free. It’s expensive, but Dr. Elra is the best.

**

I want to send a special Thank You out to Mummy for being brave enough to share her personal story, struggle, and victories with us today.  And I am so grateful you were able to find Dr. Elra and relief!  We hope it continues for you! ❤ And your quote, “I had to lay on the bathroom floor just to get relief,” struck me so hard – I think each one of us reading your story today have been there. Thank you for sharing.

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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: 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.

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.

Share Your Story: Katie

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Katie was diagnosed with Endometriosis when she was 19 years old.  Now 21, she shares her Journey with us.

Katie’s Journey:  Symptoms first started when I was 11 – my first ever period was agony. At age 12, I had an ultrasound which showed cysts, this was the first time I heard the word endometriosis. I went home and looked it up and everything seemed to suddenly make sense.

I was 18 by the time I finally got referred to a gynaecologist. In September of 2016, I had my first laparoscopy and got diagnosed with endo!

It was July 2017 when I had the laparoscopy to laser out the endo, however my gynaecologist couldn’t do it as it had grown in difficult places and he didn’t know what he was doing, which is when I got referred to a specialist!

November 2017 I finally had the endo cut out and had the mirena coil put in, so far so good!

A few blips, but that’s to be expected!

Words of Advice for Us:  Don’t give up! You know when something is wrong with your body and do not give up going to different doctors until you find a cause of the pain and find something to try and resolve it! Keep strong 💛

The Last Word:I’m always around to have a chat if anyone would like that 💕

If you would like to email Katie, please feel free to do so here.  She also has her own blog, Fabbokatie!

I want to send a special Thank You out to Katie for being brave enough to share her personal story, struggle, and victories with us today.  And congratulations on your recent engagement! 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: Aly

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Aly was diagnosed when she was 15 years old.  Now 21, she shares her Journey with us, and she has been through so much.  She does, however, continue to fight and push ahead and raise awareness.  She’s an incredible woman.  And one hell of a Warrior.

Aly’s Journey: I have been a runner since I was four years old. It has always been my passion, but it was also where my pain began. In the spring of my junior year, I was running on the track as usual when I suddenly I fell to my hands and knees in severe pain. I vomited when I tried to get up. It was the beginning of a life-changing injury in which I would endure unbearable stomach pain that I still experience even though it has been 7 years since I was diagnosed.  At first, I tried to brush it off. Each race, I believed that I only needed to work through the pain and simply get to the finish line. I would continue running and then collapse at the finish. Oddly, it never occurred to me to stop running. Injuries are part of an athlete’s life.

At my first doctor’s visit, I was told that that the pain could stem from ovarian cysts that might be rupturing and causing extreme discomfort. I underwent a round of ultrasounds and MRIs, but each time the tests would come back perfect. They couldn’t find anything wrong with me. The doctors treated me with painkillers and, when the season was over, I did well for about a month.  But when I attended a Leadership Conference that summer, I had one of my worst attacks. I collapsed, cried and was once again in excruciating pain.

When I returned home, my gynecologist said I could have endometriosis, a condition where tissue that grows inside your uterus grows outside it. It can make it hard for women to have children. I was sixteen when they told me I probably would not be able to have children. At that age, you are just trying to live and not thinking about the future. I had to grow up fast. The doctor did not want to perform exploratory surgery because I was so young, so they began to treat me for it with birth control medication. Even so, my condition failed to improve, and my doctors began to think there might be a problem with my intestines.

After they ruled out Irritable Bowel Syndrome they began to wonder if my intestines had somehow become twisted. My third doctor, a gastroenterologist, ran more tests, but the results were the same: I was perfect.

At this point it would seem like it was a blessing that nothing was wrong, but it wasn’t.

I had been in inexplicable pain for months and no one was helping me. The gastroenterologist suggested a colonoscopy and said that even if my colon was fine he would still give me a trigger injection into the area where I usually felt the most intense pain. If I was pain free for 6 to 8 hours after, he said, then it was most likely a nerve entrapment. Of course, my colonoscopy was perfect. He gave me the injection and for eight hours I felt relief, but soon the pain returned, heightened to a new extreme.

After three weeks, my fourth doctor, a pain management/anesthesiologist, used an ultrasound and finally discovered the nerve entrapment that was causing the problem. He injected the exact spot, and, after seven long months, I finally felt relief. I had forgotten what a pain-free stomach felt like. However, this only helped for a little while.

About a month later, I was collapsing and in extreme pain again. I went back to my gynecologist and we decided to do a laparoscopy my junior year of high school. When they opened me up, I was covered with endometriosis. It had started spreading to different organs. The doctor put in an IUD, another form of birth control inside my uterus which was normal protocol for endometriosis. Having the endometriosis areas removed improved my pain but a year later I still had pain. I am on a high dosage of birth control and do not have periods, but it only helps the pain a little bit.

Though I still have pain, I continued to run. My dream has always been to follow in my father’s footsteps and run in college. I continued to push through the pain even though it got worse.

I ended up going back to the gastroenterologist because I was having a hard time eating, having regular bowel movements and the pain was severe again. I was diagnosed with Irritable Bowel Syndrome (IBS) with Chronic constipation. I am on medication for this, but it does not improve the situation. I didn’t let this stop me from fulfilling my dream. I worked through the pain and became a collegiate runner. I was so happy to have finally made it, but it was going to be a long difficult road ahead of me.

During my freshman year of college, I was doing better from the pain until mid-season when I started having extreme pain and noticed I was gaining a lot of weight. I understand the freshman fifteen, but this was different. I was running fifty miles a week but still gaining weight. I went to back to the gynecologist to find out that the IUD was causing me to gain weight and have ovarian cysts. I decided it was time to have the IUD removed. I had to be put under to have it removed because it was too painful to be awake. I also have never been able to use tampons, so the insertion process has always been unbearable. I thought I was weird because I couldn’t use tampons the way my friends could. I got the IUD removed right before my sophomore year of college and was back the on pill.

I was still having pain though. I kind of got used to always having pain that I hid it away, so no one could ever tell what I was going through daily. Every year before the season starts, we must get physicals done and my sports trainer pointed me in the direction of a pelvic floor dysfunction therapist. I had never heard of pelvic floor therapy, but I was willing to try anything. It was something new and it turned out that I was diagnosed with pelvic floor dysfunction which is the inability to control your pelvic muscles and the therapy seemed to help all my conditions.

Now I am at six different chronic illnesses and I couldn’t possibly think I could have anything else wrong until I noticed that I had a hard time releasing urine. In my junior year of college, I noticed I never had the urge to urinate and it was causing extreme pain and puffiness in my body. I was retaining urine but drinking around fifteen bottles of water a day. I went to see a urologist, who ran scans and urodynamic tests. The results showed that I had pelvic floor dysfunction which I already was treating. So, the urologist decided to put me under and do a cystoscopy with hydrodistention. She was looking for Interstitial Cystitis (IC). IC is s a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain around bladder lining. The procedure showed that I have IC and my bladder lining had tears in it.

After the procedure, I was doing the best that I have in six years. It felt good to only have mild pain. I had hope that things were getting better. I was prescribed Aloe Vera pills to help thicken my bladder lining.

But the pain returned, and no one knows how to help because there is not enough information out there.

I suffer from endometriosis, but I also have a nerve entrapment, ovarian cysts, pelvic floor dysfunction, chronic IBS with constipation, colon spasms, gastritis and interstitial cystitis.

I suffer from severe pain daily that hinders my way of living.

All my issues stem from endometriosis. It has changed how I live and makes it very hard to be an average twenty-one-year-old.

I, like so many other women, suffer from an illness that gets overlooked every day.

Even when they find out what is wrong, there are barely any ways to help.

Endometriosis is incurable, but I hope one day my story and all the other stories out there will bring awareness and the importance of trying to find a cure for endometriosis. As a designer, my goal is to spread awareness so that women voices can be heard so that we can find a real solution for our real pain. My journey is not over but I keep fighting so that one day my pain will be gone.

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If you wish to contact Aly, you may email her here.

I want to send a special Thank You out to Aly for being brave enough to share her personal story, struggle, and victories with us today.  I am so grateful that you continue to fight and look forward to helping you with your project!    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.