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: Nathaly

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Nathaly was diagnosed with Endometriosis, Adenomyosis, and fibroids when she was 26 years old.  A year later, she shares her story with us.  And, Nathaly will be walking on March 25th with friends and family at our Endometriosis Awareness walk! Looking forward to meeting her ❤

Nathaly’s Journey: My story starts when I was only 11 years old. I often found myself curled up in a ball waiting until I would finally pass out so the pain could be over. My mother was very strict growing up so birth control was out of the question, even if it was for medical purposes.

I was rushed to the ER once when I was 19, one of the responders said his daughter was on birth control to help with pain. Being an adult now I had the ability to seek medical advice but being on my moms insurance meant I would have to go to Planned Parenthood to get birth control. Being on birth control made it not necessarily easier, but more predictable.

I also started going to an allergy specialist as I noticed certain foods were contributing to making me feel ill. After I went wheat and dairy free I began feeling better. By 25 I started to eat all food again and the pain and exhaustion came right back.

While working at the barn one day I felt lightheaded and my vision went black while I had shooting pains down my legs. Later that day a coworker overheard what happened and told me it sounds like Endometriosis. I began researching it and I had every symptom of Endo. I went to visit my doctor and she called it painful cramps and told me to take ibuprofen. Feeling discouraged I decided to hold off on seeking anymore medical advice.

In 2015 my mom had a partial hysterectomy and told her doctor about me. Dr. Mackovic-Basic, the founder of Complete Women Care specializes in reproductive disorders and could tell me on my first visit it was most likely Endo. After my ultrasound she said it also looks like Adenomyosis because of the enlarged thick shape of my uterus.

I had my first laparoscopic surgery Nov 2016 where they confirmed stage 2 Endo and Adenomyosis but they also removed large fibroids that had necrotic tissue from being hidden so well for such a long time. After two weeks I knew something was wrong and it wasn’t just healing pains. I had sharp belly button pain and my right side was throbbing. My doctors all agreed it may be time to see a GI specialist.

December 2016, almost exactly a month after my surgery I was rushed to the hospital. There was a lot of fluid in my stomach and my white cell count was concerning. I had appendicitis and it was stuck to my adhesion removal site causing widespread infection in my uterus. Following surgery I have been put on a strict diet, no red meat, no soy, no artificial sugars, limited dairy, and some veggies and fruits are restricted. I currently take whole food based prenatal, DHA, B complex, and Tumeric for inflammation. I had to do pelvic training therapy for six weeks.

February 2017 I had my eight week post op check up and my inflammation has not gone down yet. Fibroids have already grown back but are only at 1cm currently. I am going on round two of six week pelvic therapy and once this is done I can hopefully complete testing with a GI. Next year I’m going to do a Hysterosalpingogram so we can try for a baby. I’m feeling hopeful that all the steps I’m doing now will greater my fertility chances and lessen my chances of miscarriages. After my first child my doctors and I think a hysterectomy is my best bet to tackle the Adenomyosis as well as any GI issues I may have. As for now it’s all a waiting game.

Words of Advice:  Never give up finding your answers, especially when your body is trying to tell you something.

The Last Word: I love reading stories on Bloomin’ Uterus, I feel this is a special place we can all connect and learn from each other.

If you wish to contact with Nathaly, you may email her here.

I want to send a special Thank You out to Heather for being brave enough to share her personal story, struggle, and victories with us today.  I am glad that you pursued your medical diagnosis, understanding something wasn’t normal!  And hoping that you continue to heal up from your surgery and the inflammation and fibroids dissipate.  Thank you for sharing your Journey!!!  Hoping it helps others going through similar issues.

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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.

October’s Winner!

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Congratulations, Debbie of New Jersey, for winning our October Coloring Contest!  You’re automatically entered to win our Grand Prize: having your design printed on a t-shirt next year!  All profits of the t-shirt sales will go to the Endometriosis Foundation of America.

If you’d like to enter our contest, a winner will be picked every month until April 1, 2017.  For more information about prizes and where to download the template(s) and enter, click here:  https://bloominuterus.com/2016/09/15/endo-coloring-contest/.  The more times you enter, the greater your chance of winning!  And the best part?  Spreading Endo awareness and having fun at the same time!  Who doesn’t like coloring?!?

Debbie shares her journey, heartfelt emotion, and encouragement with us today:

“I was diagnosed with endometriosis and adenomyosis on the operating table.  I had the classic symptoms: exceptionally heavy periods, dramatic clotting, excruciating pain…you name it, I probably had it.  But, I’d been told for years that it was just a quirk of my anatomy, so I silently dealt with it.  It was not until I was diagnosed with other issues that I finally learned the seriousness of it.

The endometriosis was, for me, just one piece of a very complex puzzle that included a subtotal hysterectomy instead of the planned total hysterectomy, due to the fact that the endometriosis had adhered my cervix to my bowel.  At the same time as the hysterectomy, I had another surgery and procedures in my abdomen, so they had to do it via an open, vertical incision.

Like others, I would imagine, I looked at the coloring pages and saw myself in them. I identified with the experience of coming out of the bathtub, a moment that has been rendered sensually in art for years, but a moment that, for me, has been simultaneously sensual and scandalously off-putting.  I used the background color and the towel to allude to my experience, and I modified the profile to more closely resemble my own.  I added my abdominal scar, which is now a part of my profile.

I hope that in 10 years we will no longer see women having experiences like my own.  Needless to say, proper treatment for endometriosis is a vital part of that.  Personally, I hope that my story makes a difference in the lives of others.  It has been difficult to write what so few have known, so that is my first step.  As a group, I think that just being there for each other, providing support, can make a huge difference.”

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Thank you, Debbie, for creating such a beautiful piece of art – a piece of you – with us today. ❤

Toxic Clothing?

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Some of you may have read my blog entry about tampons and dioxins (if you haven’t, you can here), which struck up a conversation with one of my friends : what about rayon in clothes?

So, while I began my research I decided to do something different.  Rather than write a blog about rayon and the possible exposure to chemicals and dioxin, I decided to just share the links with you.  There are many!

If you’re worried about over-exposure to chemicals, toxins, or dioxins with your food and household products, what about your clothing?  It’s on you all day, and up against your skin – soaking in all things!!

Is there merit behind these articles?  That’s your question to answer…Happy reading!

Body EcologyThe Top 6 Fabrics You Should Avoid Wearing and Why

ESSAICan This Outfit Make Me Toxic? written April 1, 2011, by Alana Shuma

Green Choices Environmental Impacts

Natural NewsBeware of Hidden Toxic Sources in New Clothes – Always Wash Them Before Wearing written September 1, 2012, by P.F. Louis

Natural SocietyChemical Clothing: Which Hidden Toxins Are You Wearing? written April 8, 2013, by Paul Fassa

Six WiseThe Six+ Synthetic Fabrics You Most Want to Avoid, and Why

The Healthy ElephantAre You “Wearing” Your Way to Cancer? written August 20, 2013, by Laurie

TreehuggerWhatever Happened to: Bamboo Clothing written July 27, 2014, by Lloyd Alter

Quantum TechniquesBusted: Bamboo Fabric Loaded with Toxic Chemicals written by Sarah Bun

Adenomyosis

The word Adenomyosis covered in little spots and lesions

April is Adenomyosis Awareness Month.  Ado-what-o?  A disease, similar to Endo; some say Ado is the cousin to Endometriosis.  And many women with Endo also suffer with Adenomyosis.  So, I figured I’d spread a bit of awareness of Ado during this month and learn something in the process.

A few gals who attended our Endo walk suffer also from Ado.  And one gal who showed up to our last Endo support group meeting suffers from Ado (but not Endo).  It’s a term I’m beginning to hear a lot more about.  But, what is it?

What is Adenomyosis?

So if you’ve been reading these blogs, you probably know all about Endometriosis.  Adenomyosis is often described as Endometriosis inside the walls of the uterus : the same implants and lesions as Endo form within the uterine walls and muscle tissue. They cramp, they bleed, they spread…just like Endo.

Adenomyosis can sometimes be misdiagnosed as fibroids.  Some implants can grow into tumor-like masses, showing up on imaging scans, which may be misread as fibroids.  These masses are called adenomyoma.

Like Endometriosis, there is no known cause of Adenomyosis. The two theories I’ve run into are 1) endometrial cells migrate into the walls of the uterus and 2) endometrial cells simply develop within the walls of the uterus.  There is also a theory that women who have had c-sections, tubal ligations, or abortions may develop Adenomyosis based on transference of tissue and cells during the procedures.  Many also believe, as with Endometriosis, that there is a strong connection between Ado and estrogen.

Signs & Symptoms

Much like Endo, Ado can cause severe menstrual pain and cramping, heavy bleeding, spotting, lengthy periods, an enlarged or hardened uterus, painful sex, and possibly infertility.  And, some lucky women are asymptomatic : they have no symptoms.

Diagnosis

Most women receive their Adenomyosis diagnosis after they’ve already received a hysterectomy and the pathologist biopsies the uterine tissue.

However, if you still have your uterus and wonder if you suffer from Ado, MRIs may be able to help diagnosis it.  Again, the tumorous growths within the uterine walls may be mistaken for fibroids.  And that’s assuming Ado has developed into masses and not just the tiny lesions and implants that may not be visible in an imaging study.  Ultrasounds may also be useful in helping diagnose suspected Ado.

A hysteroscopy (a little camera tube pushed up into your uterus) or needle biopsies (little punches of tissue samples) may also help in the diagnosis of Ado; however, it may be inaccurate and provide a false negative since they may not be taking a tissue sample of the deeper uterine wall which is affected by Ado.

Treatment

Supposedly, having a hysterectomy can cure Adenomyosis…simply because the uterus is removed and Ado inhabits the walls of the uterus.  Take out the uterus; take out the Ado.  However, there are studies that indicate it may not cure all of the painful symptoms.

Don’t want to remove your entire uterus?  Talk to you doctor about a uterine resection to remove sections of outer uterine wall that are heavily affected by Ado.  This may not help all cases of Ado, especially if the implants are numerous or are closer to the interior of the uterus.

Our favorite, GnRH agonists (aka Lupron Depot), may help ease the symptoms of Adenomyosis, but it’s no cure.  Also, progesterone contraceptives (whether an implant or the pill) may help suppress the symptoms.

Ablation has been thrown around as treatment for Ado; however, that’s for superficial implants.  Since Ado may grow deeper within the walls of the uterus, ablation may not be able to scorch away hidden lesions and symptoms may persist.

A video created by Dr. S. Selva of Selva’s Fertility, Obstetrics & Gynaecology Clinic explains all of this a lot better than I can:

Support

And I thought finding a support group in my area was hard for Endometriosis…there’s even fewer groups or organizations out there for Adenomyosis! The Adenomyosis Advice Association has a great online support center. There is also a Facebook private group called LIVstrong

If you suffer from Adenomyosis, please feel free to add a comment below.  I don’t suffer from it, but would love to learn about your experiences, how you were diagnosed, and what has (or hasn’t) helped with your symptoms…especially now because I have several women in my life who do suffer from Ado.

**Updated March 25, 2019**

Resources:

Adenomyosis Advice Association

Global Library of Women’s Medicine

Institute for Female Alternative Medicine

Jean Hailes

John Hopkins Medicine

La Radiologia MedicaMRI, US, or Real-Time Virtual Sonography in the Evaluation of Adenomyosis?

MedscapeAdenomyosis Imaging

The American Congress of Obstetricians and Gynecologists

The Center for Innovative Gyn Care

Women’s Health – Adenomyosis – An Internal Uterine Endometriosis

~ 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

Share your Story : Rebecca

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My Journey with Endometriosis & Adenomyosis by Rebecca L. Gibson

I was always healthy and active in sports while growing up. In 2008, I married my childhood sweetheart and we began our life together. Everything changed in 2009 when I developed symptoms of endometriosis. Endometriosis (en-doh-mee-tree-oh-sis) is an extremely painful condition where tissue resembling – but not the same as – the endometrium (lining of the uterus) is found elsewhere in the body, outside the womb. Although symptoms may indicate endometriosis, an official diagnosis can only be made through surgery. Common symptoms include, but are not limited to –pelvic pain apart from menses, debilitating menstrual pain, backache/leg pain, painful intercourse or pain associated with sexual activity, painful bowel movements, fatigue, bloating, constipation/diarrhea, which may worsen during menses, pain with exercise, painful pelvic exams, painful urination, sciatic pain, infertility/pregnancy loss.

Treatment is performed at the time of diagnosis. Most OB/GYNs attempt to surgically remove the disease using a method called ablation or otherwise “burning it off.” Unfortunately, this option is superficial at best, as it leaves deep disease behind. ACOG states 40-80% of patients will have a recurrence within 2 years following this method of treatment. Patients may also be prescribed hormonal medications to suppress remaining disease, but this is merely a ‘band aid’ approach and symptoms typically return as soon as the use of hormones is discontinued. Hysterectomy is also sometimes performed to ‘treat’ endometriosis, but this may actually be unnecessary and needless in many cases. While there is no universal cure for the disease, surgery with a Minimally Invasive Gynecologic Surgeon with a dedicated focus on endometriosis who can perform Laparoscopic Excision – which “cuts out” the disease from all areas – has been shown to be far more effective; often preserving the patient’s reproductive organs in the process.

Despite dietary changes, herbal supplements, chiropractic adjustments, and massage visits, my symptoms and pain increased every month and my health deteriorated quickly. I experienced 24/7 debilitating pain. My life as I knew it ceased to exist and by the beginning of 2010, most of my time was spent curled up in the fetal position in bed. In March 2010, I agreed with my local gynecologist to try birth control pills in an effort to lessen my symptoms. While I experienced some relief, many symptoms persisted and my health remained in very poor condition. My local gynecologist was honest with me about the limitations and high recurrence rates of the surgery that she could offer. I made the decision to instead travel to an advanced surgeon and, on June 24, 2010, I was surgically diagnosed with endometriosis.

An expert specialist surgeon, Dr. Ken Sinervo, excised endometriosis from multiple areas in my pelvis and performed an appendectomy (removal of appendix). The surgery completely resolved my endometriosis symptoms and my quality of life improved dramatically. Post surgery, I was able to discontinue the birth control pills. My periods were light and easy – not so much as an ibuprofen required! After losing almost a year of my life, I was pain free! In August 2011, I discovered that I was pregnant, and in April 2012, I gave birth to a beautiful baby girl. I delivered my daughter naturally with no pain medication. The pain of labor paled in comparison to the endo pain I had dealt with years before. Indeed, endometriosis is more painful than un-medicated labor/delivery for many individuals. After the birth of my daughter, my quality of life remained excellent. My periods continued to be light, easy and pain free for years.

In 2014, I developed severe pelvic pain again, but this time the type/location of my pain was not consistent with endometriosis. My symptoms pointed to a different culprit, and my doctors determined that I had a condition called Adenomyosis. Adenomyosis (ad-uh-no-my-O-sis) occurs when endometrial tissue is found within the muscular lining of the uterus, or myometrium. Once called ‘endometriosis interna,’ Adenomyosis is not actually the same as endometriosis. Symptoms of adenomyosis include – heavy and often prolonged menses, clotting during menstruation, spotting or bleeding between periods, midline uterine pain consistent with labor contractions,feeling of heavy “pressure” (described as a “burning bowling ball”) in center of pelvis, backache/leg pain, painful intercourse or pain associated with sexual activity, painful pelvic exams, pain with full bladder/urination. For women who experience severe discomfort from adenomyosis, certain treatments can help, but hysterectomy is the only cure. (Note that while a hysterectomy is a cure for *adenomyosis*, it is NOT a cure for endometriosis).

On December 30, 2014, nearly 5 years after I underwent expert excision surgery for my endometriosis, I returned for a hysterectomy (uterus and cervix removed) to treat adenomyosis. THERE WAS NO ENDOMETRIOSIS FOUND ANYWHERE, only adenomyosis as had previously been suspected. I retained both of my ovaries. Thanks to the early detection by my local gynecologist and the expert surgical skills of my endometriosis surgeon, as of June 2015, I am now 5 years endometriosis-free and 6 months adenomyosis-free! The following resources were hugely beneficial to me during my journey: www.centerforendo.com, FB: CenterforEndometriosisCare, www.endocenter.org, FB: Endometriosis Research Center, www.endometriosis.org

Words of Advice for Us: My number one piece of advice to anyone struggling is to research the difference in surgical techniques – ablating/cauterizing “burning it off” the lesions has a VERY high recurrence rate. Excision, on the other hand, has been shown to be much more effective in long term relief. If your doctor tells you that you will need yearly surgery and indefinite hormonal suppression, know that there ARE other options. Consider seeking out an excision surgeon who solely performs endometriosis surgery. The average OB/GYN focuses on pap smears, prenatal care, delivering babies, etc – most do not have the time required to devote to developing the skills needed to perform expert excision surgery.

The Last Word: You’re not alone. There is HOPE.

If you wish to contact Rebecca, you can follow her blog here.

Thank you, Rebecca, for being so bold to share your journey and on video even!  May your story inspire countless others to continue their fight.

 

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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.