Pam 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!
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.
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!
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.
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!
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.
The red circle is the approximate area where my Endo is
If you’re one of my dedicated readers, you’ll remember that I had my third Endometriosis excision surgery on July 18th of this year. You may remember that during that surgery it was discovered that I had a few big ol’ chunky Endo lesions on my bowels (where my small intestine and large intestine meet) that couldn’t be superficially removed. A colo-rectal surgeon was brought into my surgery and advised that a bowel resection should take place.
This slideshow requires JavaScript.
The only problems?
I hadn’t prepped for a bowel resection (oh man, it’s a whole process for the few days leading up to surgery);
The colo-rectal surgeon wasn’t in my insurance network.
The plan? That surgeon was going to apply to become a member of my network and I’d have my bowel surgery with him as soon as everything was legit. I met with the colo-rectal surgeon on August 8th for a consultation (oddly enough covered by my insurance since he poked his head into my surgery) and had a discussion of our future plans.
I was told in August that the network acceptance process could take anywhere from one to three months. So, I sat patiently…for a while.
A month passed. Then I called my insurance company to see if there was anything they needed from me to speed along the process. Nope. Then I called my colo-rectal surgeon’s office to ask the same question. Nope. Big fat nopes all the way around.
So I waited another month and then googled my medical group assigned by my insurance company. On their webpage was the name and telephone number of the Director of Networking – the person to whom inquiries were to be made if you were a physician looking to join the medical group.
So what did I do? I called and left a voicemail message. A week later, I left a second message. And a week after that, I left a message with her secretary.
The day I left my third message…she called me back. The Director! I don’t know what I expected, but certainly not what happened next.
She apologized for not calling me back sooner but stated she was having my medical history and records pulled to review. She found that there was no mention of any pending referral or need for a bowel resection; which wasn’t unheard of since the surgeon wasn’t (yet) an in-network physician. BUT Dr. Schutzel (my soon-to-be-colo-rectal surgeon) likely wouldn’t be approved for another three months. Early 2019! I wanted to cry.
I briefly filled her in. Well, that’s a flat-out lie – you know I can’t do anything “briefly.” I mean, look at this blog entry already! Anyway…she heard me out. All of it. And offered a suggestion: have my gyno-surgeon put together a written request explaining my need for a bowel resection and why we wanted it to be this particular out-of-network surgeon (rather than one of the four already in-network). Then needed to tack on a copy of my July op report, and the Directory may…and I stress the word may…be able to get a one-time-only approval to have the out-of-network (aka yet-to-be-approved) surgeon covered by my insurance to do my surgery.
I gushed my appreciation and thank yous to her and hopped on the phone with my gyno’s office. They prepped the letter the next day and sent it off! A few days later: *abracadabra* I get a phone call (which I missed) and listened to in my voicemail.
It was the Director of Marketing…calling me after hours to let me know that the request had been APPROVED and the next step was to coordinate the surgery date!
OMGOMGOMG
She did it!! We did it! But I never would have known it was possible if it weren’t for her taking the time to review my records, listen to my tale, and offer the suggestion!
Literally less than a week from the day we spoke to the day she called to let me know it was approved! I’m so grateful to her and my gyno’s office!
The following morning, I called the colo-rectal surgeon’s office to see if they needed any information from me. By lunchtime the same day…everything was all set up:
My bowel resection is scheduled for Monday, November 26, 2018, at 7:15 in the morning!
And to make things even better?
It will be a robotic-assisted laparoscopy, using the DaVinci system (which is what’s been used for my three prior laparoscopies); Aaaaaaaaaaaaaaaaaaaaaaannnnnnnd…
Dr. Kurtulus, my Endometriosis excision surgeon (and gyno and incredible human being) will be scrubbed in and at-the-ready to take a peek under the hood to look to see how I’m doing since my July surgery! And to excise any Endo they may spot along the way!
The double-whammy!!
I’m so comforted by the fact that my medical care team fought for this to be approved and scheduled so quickly. But the super-duper comforting thought? Dr. Kurtulus, my gyno and my surgeon, made himself available (and insisted on being present) for my colo-rectal surgery. And influenced the decision for the surgery to be robotic-assisted.
And…this entire endeavor is a huge reminder on why we should be persistent and self-advocate.
Now here’s my question to you gals and guys: If you’ve ever had a bowel resection, do you have any tips for surgery prep, recovery, or diet? I have my pre-op packet and I’m sure I’ll receive a whole slew of post-op instructions…but I also like to hear yourexperiences and suggestions. If so, drop me a comment below! Please!!
This one is for all of my EndoWarriors who step up and fight, self-advocate, share, speak out, etc. We can do this.
“Be BOLD like a cicada-pipe the heck up” ― Maureen Joyce Connolly, Little Lovely Things
May we be a loud chorus of support and advocacy!
Have a glorious weekend.
Love, Lisa
Blogs I updated this week:
Dungeons & Dragons & Donuts – added our July 2018 session (yes, we’re a bit behind). It is lovingly referred to as the “Bathroom Escapades” as our adventurers plot their way out of Lord Krim Breakhandle’s mansion.
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!
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.
There’s a study published in August of 2018 that I just read, and it threw me for a loop. So I wanted to share it with you.
A 52-year-old woman went to her Primary Care Physician because she had a weird leaking hole near her right hip. It just drained a nasty discharge. He put her on antibiotics for two weeks, but it didn’t resolve. After suffering from the drainage for two months, she went to the emergency room. You can see a photograph of her little hip-hole here.
Her prior medical history included a nephrectomy (the removal of one or both kidneys) and a c-section. She also denied any changes to her bowel habits, any signs of infection, or abnormal weight loss. She didn’t have any signs of fever, her white blood cell count was normal, her blood circulation was fine, and her abdomen was a little bit tender.
A CT scan found a “cystic lesion” near her lower right pelvic area and a fistula that exited out of her body near her right hip. Now before I go on, I had to look up what the heck a fistula was.
In my super layman understanding? It’s a hollow tube from one place to another. In this poor woman’s case? From her bowel to the outside of her body. The authors classified it as an enterocutaneous fistula…You can only imagine what that discharge must have been. (Ewwww)
Due to the surprising results of the CT scan and a concern for a bowel perforation, she underwent a laparoscopy. The cystic lesion discovered in the CT scan was “severely adhered” to her pelvic floor and to her bowels where her small intestine and her large intestine meet, aka the terminal ileum. They removed the mass and the section of intestines in one fell swoop and the biopsy results came back as positive for Endometriosis…so she received a diagnosis of Ileal Endometriosis. The authors of the study believe that this Endometriosis caused the enterocutaneous fistula…the hole that she had been leaking discharge from her right hip. She was released from the hospital six days later without further incident.
Not only is this incredibly rare…it’s believed to be the first case of its kind. So please don’t panic at every oozing sore you may have on your body. BUT…do arm yourself with the knowledge that it can happen.
I was amazed and flabbergasted by this study. Of course, the authors don’t opine as to how the ileal endometriosis caused the enterocutaneous fistula, but chalk that up to one of the many mysteries of our illness.
Resources:
Journal of Gastrointestinal Surgery – (Abstract; Aug. 2018) Ileal Endometriosis: a Rare Cause of Enterocutaneous Fistula – Please contact me if you’d like to read the entire article
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
And what a busy one it’s been! I know I’ve said it a lot lately, but I am so very sorry I haven’t been able to dig in and do more research. I miss having the time to be able to do that.
I will once more. I promise.
If YOU have anything you’d like me to research, please send me a question via this link!
Take some time for yourself today. Even if it’s just a quick breather. Step away from your tasks, your to dos, your obgligations. Just breathe, maybe give yourself a pep talk in the mirror, remind yourself that you ARE worth it.
Today’s quote is brought to you by my favorite employee at a bagel shop, Phil. Next Tuesday is his last day and I am SO sad! Not only does he make me smile and is a beacon of joy in my mornings, but he gives THE BEST hugs.
“When a hug is this big, you feel it for days.” ― Jessica Shook, Shrapnel
I’m a huge hugger. Always have been. Always will be. They just feel so good to give and receive. Better than a warm handshake or a smile.
🙂
Have an incredible weekend!!!!!!!!!!!!!!! Go hug someone you love.
Pam was diagnosed with Endometriosis when she was in her 40s. Today Pam is 59 years old and shares her story with us.
