An Update on my Insides

Various clocks, all showing 12:45pm

On April 22, 2019, I met with my excision surgeon and gynecologist, Dr. Mel Kurtulus to discuss the results of my annual pap smear, ultrasound, and blood work.

The pap smear came back normal for both of my cervixes. Yay! The blood work came back stellar. The ultrasound; however, had some not-so-welcome results:

  1. My left ovary is developing a cyst. Not just any cyst, but it’s either a hemorrhagic cyst… or (wait for it…) an endometrioma. Right now it is small, coming in at 1.5cm (a little over 1/2 an inch); and,
  2. Small abnormalities within my uterine wall may be signs of adenomyosis. This came as a surprise…but I let him know I was familiar with the condition as many of my EndoSisters had it as well. I’d done research and blogged about it back in 2016.

The plan? To remain positive – it’s a small enough cyst that doesn’t warrant any action (yet), I’m not in ANY pain, I’ll have a follow-up ultrasound in late July, and I’ll meet with Dr. Kurtulus in early August to discuss those results. I will continue tracking my diet, pain, and symptoms in the meantime. And if anything sparks up horribly before then, I’ll call for a consult.

We spent several minutes afterward discussing an upcoming event that we’re hosting together, as well as a few concerns about ultrasound and post-op procedures. The meeting ended in our usual smiles and hugs.

I think if I were in pain, being positive would be harder to maintain. But the only indication that I have anything wrong on the inside (or the possibility that my endometriosis is coming back) is my ultrasound. But will I need surgery in the future? Only time will tell. And will I miss out on future vacations, like Burning Man (a place lovingly referred to as Home, a week spent making amazing memories with friends)? I haven’t been able to return since 2015…and I miss it. Who knows. My best friend and other-love-of-my-life, Rosie, lifted my spirits yesterday with “…you are more Home for me than any place. We don’t need any destination.” So if I am robbed of another two weeks vacation in the future due to a need for another surgery, I won’t lament. I will make other plans with those that I love.

Forging lasting relationships with your medical providers and their staff can lead to amazing experiences and friendships. These people aren’t just my doctor, his nurses, or administrative staff. I consider them my friends. And we’re all in this together.

I don’t know how I got so lucky. I was randomly assigned this gynecologist by my Primary Care Provider back in 2013 because I moved to San Diego, had new insurance, and was in need of a pap smear. And I am so very, very, very grateful.

A friend, fellow EndoWarrior and Sister of our local support group sent me a study showing results of N-Acetylcysteine reducing the size of endometriomas in a small study group. So, I’m going to give it a try. She had previously received a “it can’t hurt” approval from Dr. K when she brought it up to him for herself, so I’m sticking to the study dosing, three times a day, and will see how it looks in July.

So, the plan is in motion. The appointments are on my calendar. And life goes on.

And jokes are always a good thing: “Your an ova-achiever” and “Stop growing so much stuff!” and “At least your left ovary is still working well” are all fun observations since yesterday. They all made me laugh. Still do.

Share Your Story: Daniela

Quote: I feel hopeless

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.

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.  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: Susie

Photo of Susie

Susie is 41-years-old and was just diagnosed with a surprise Endometrioma in a very surprising location.  She lives in Austin, Texas and is coming to grips with her diagnosis, as well as searching for answers and support.

Susie’s Journey:   I began experiencing symptoms of my disease when I was in my early 20’s around 2004-2006, I felt a lump on the right side of my groin that moved around a bit. I had a pap smear that showed normal results, then a sonogram that did show the mass, and then a CT scan that was inconclusive. I was told that cancer was ruled out and that they had no idea what it was, but that it wasn’t worth doing a biopsy over, but that if it ended up causing problems in the future, I might probably have to have one.

Being a young 20 year old, I feared the idea of anyone cutting my groin open and could not afford to get off of work for surgery anyway. I lived with the mass for over a decade. Throughout that time, I began noticing it growing larger and becoming more firm. It was no longer moveable and it swelled up around my menstrual cycle. The day before or the day I started my periods, there was extreme pain. The pain also continued up to a week after my periods. Sometimes, it made it a little difficult to walk and I’d get a bit of pain on my right leg, but not too much. It prevented me from moving and sitting freely. I couldn’t even cross my legs.

Fast forward to 41 years old, I finally decided that it was time to do something about it. I read up about endometriosis and even asked the doctor if it was a possibility. After about several pelvic exams, 2 or 3 sonograms, a CT scan, and a very painful biopsy that required 2 shots of local anesthesia in order to retrieve 2 samples of the mass, I was finally diagnosed with endometrioma.

I was given the option of excision or just living with it.

Doctor asked me if I’ve considered birth control and slightly suggested I use it. I told him that birth control would not remove the mass and did not help me much when I was on it in my 20’s and that I wanted this lump out of me. He said that he would perform a simple outpatient excision that would require very little (if any) time off of work and that I would be running around just fine afterwards. About 2 weeks ago, I finally had the surgery that did verify “endometriosis”. I was completely anaesthetized to sleep. Btw, I’m not sure what the difference of “endometrioma” and “endometriosis” is because both words keep getting used by my doctor and pathology report. My doctor corrects me when I call it “endometriosis” and says it is “endometrioma” and then the pathology report says “endometriosis”. My doctor seems impatient when I ask him to explain the difference. I almost wonder if he actually knows about what I have and doesn’t want to confirm my suspicion. I am in the dark about that right now.

WELL, I awoke from my surgery to find that my right foot and leg were asleep. I could barely move my toes. My feet have a tingly feeling and my leg has the same feeling as though it’s been asleep and is about to start waking up. I was told that because I could move my toe, it was a good sign and that I should be able to start walking just fine again in about a day. Since then, although, I regained some feeling back to the upper part of my leg and some of the left side of my right foot, I am experiencing Charley Horses” both in my sleep and mostly when I walk for the past week. I still have to walk very slowly with a cane and an extreme limp.

Yesterday, I was admitted into the emergency room to check for DVT (Deep Vein Thrombosis aka “blood clots in the leg”) but I checked out clean. The emergency staff told me that I did not suffer from dehydration and that my potassium levels were fine and that all he can think is that maybe my leg’s nerves are cramping because they are “waking back up”. I don’t know if I’ll be able to walk like normal again. It’s very hard for me to get around at work and college classes are difficult to get to. I have to have people do things for me. I had to cancel my birthday plans to go to the beach because I don’t think I’ll be able to walk around in the sand and the idea of a wheelchair is very depressing. I am getting married in October and am mortified of the idea of having to walk down the aisle or live my life with a cane. My follow-up appointment with my surgeon is next week. Although, I hope that I will be okay by then or that he’ll be able to help me, I don’t know if he’ll have any help to offer. It’s scary how little the medical industry knows about endometriosis. What is wrong with my leg???! Also, now I’m hearing that just because you have endometrioma excised doesn’t mean that it won’t come back and that I should consider a hysterectomy. I don’t want to go through this again. I almost regret having the surgery in the first place. I hope that it was worth it and that I will be able to walk again.

Words of Advice: Read as much as you can about it. Meet as many people as you can. Ask as many questions as you can. Don’t give up.

The Last Word: I hope that we can get more endometrioma awareness outreach out there.

If you would like to e-mail Susie, please feel free to.

I want to send a special Thank You out to Susie for being brave enough to share her journey with us today!  Congratulations on your upcoming nuptials!!  And good luck with your healing and the circumstance with your leg.  You have my email address, woman – keep me posted!!    ❤ Yours, Lisa.

Paper with "Tell your story" written on it

And if YOU would like to share your story, send it to me; I’d 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.

So…this just happened…

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Two weeks ago a paper was published in the Acta Veterinaria Scandinavica journal.  The first reported case of an Endometrioma in a dog.  A German Shepherd, to be precise.  Now don’t be too surprised; primates have been found to develope endometriosis: gorillas, monkeys, and baboons.  But this is the first time captured in literature that an animal has developed an Endometrioma.  What’s that?  A blood-filled cyst consistent with Endometriosis, sometimes referred to as a Chocolate Cyst.

The German Shepherd was 11 years old and was presented to a hospital in Brazil and had been suffering for the past month from dehydration, anemia, and prostration (laying down stretched out).  She had previously had “multiple natural deliveries,” had gone into heat routinely twice a year, and was never given any contraceptives.  During her precursory examination, she suddenly passed away.  An autopsy was performed and a mass was discovered on her left ovary.  Upon inspection and biopsy, it was confirmed to be an Endometrioma.  They theorize that animals, especially a dog, must develop Endometriosis through the coelemic theory, since they do not shed their endometrial lining or have retrograde menstruation.  She also did not have heightened levels of estrogen or hormones, which is another theory in Endo among humans.  What is the coelomic theory? I had to look it up, too :

The coelomic metaplasia theory. This theory proposes that the coelomic (abdominal) cavity contains cells capable of dedifferentiating into endometrial tissue. This theory is based upon embryologic studies demonstrating that all pelvic organs, including the endometrium, are derived from cells lining the coelomic cavity and these cells have the ability to become whatever they want to become. ~ Dailystrength.org

The poor old gal.  I know (and many of you know) how painful this can be.  Let’s hope she didn’t suffer, unable to express her pain and discomfort to her owners, forced to lay there in inexplicable discomfort, helpless.

To read the entire study, please click here.

Yours,

Lisa