Share Your Story: LJG

LJG was 30 when she was diagnosed with Endometriosis.  Now 33, she tells us a bit about her Endo journey and how diet has helped her along the way.

LJG’s Journey:   Always had painful first day of cycle and thought it was normal. Wasn’t sexually active till 25 and had no pregnancy scares while using little to no protection. My hubby and I decided to try for a baby so we both got checked out. He has kids and his sperm was fine. My gyno suggested an HSG test. Did it, no pain which is odd cause I heard horror stories. One of my Fallopian tubes was blocked. Shortly after I had painful sex, I couldn’t walk well for days (I think he hit a cyst). Went to a different gyno cause the other didn’t seem to have urgency. He found an infection due to the dye that got stuck in the tube from the HSG test. We went to a fertility specialist and suggested a laparoscopy to see if it was endo and said I have a higher chance of getting pregnant if the damaged tube is gone. At that time I found out my mom has endo (I knew she got a hysterectomy when I was 4 but didn’t know why).  He did the lap, removed scar tissue, several chocolate cysts, and one Fallopian tube. The best chance was within 6 months. This created issues with my hubby and I, planning intimacy and heartache every month. I started to have more pain each month. So I turned to support groups online and learning more natural things I can do. I tried one month drinking wine with dinner and eating whatever I wanted, dairy, gluten, sugar, processed crap and soy. I was in the worst pain. So I cut out alcohol fast and tried to cut back on everything else. Less and less pain. All this took a year going from one doc to the other. Changing eating habits is a process I’m still learning and fail at 3 years later but this last cycle I didn’t take any pain meds!

Words of Advice: Try a diet that works for you and keep at it! I cut out alcohol, cut down as much as I can on processed food, soy, animal products and gluten. When I do eat animal products I do organic, grass-fed type of products. Learn more about GMOs and what the animal eats is what you’re eating. Add things to your diet like turmeric (natural aanti-inflammatory spice in Indian food) and tart cherries! I drank a couple shots of tart cherry mixed with dark cherry juice the day before and during my cycle and pain decreased. I have also started to juice: mainly beets, carrots, celery, apple. Sometimes I put in pear or blueberries. Trying different period products, I tried a couple brands of organic cotton tampons and pads at the same time cause my flow was heavy. Some organic tampons came apart easy so I got nervous and tried the diva cup. I only do it in the beginning now but the results are amazing. My flow when from heavy to a medium to light flow. (could be a mixture of cup and healthy eating).

The Last Word: This month I’ll be 34, my hubbies ex is giving birth any day to another child. I used to feel crappy cause she could give him a kid and I couldn’t. I haven’t looked into seeing if my other tube is blocked so there could be a chance I could get pregnant. My hubby and I have talked about adoption and ivf and just this past week I finally feel like that option is an option for me. There is hope! Things don’t always come on our time or the way we expect.

I want to send a special Thank You out to LJG for being brave enough to share her journey with us today!  Best of luck maintaining your diet, finding what works best with your pain, and your ongoing efforst with your hubby for a child!    ❤ Yours, Lisa.

downloadAnd 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.

Feel Good Fridays!

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It’s Friday!

And it’s been a weird one.  Grief, and pain, and doubt, and anger, and calm, and sadness, and nothingness, and joy.  Not just because of the failing health of my uncle.  But life in general.  I’ve started writing in a journal again once a day, trying to get it all out without letting it bury me, or those around me.

And it’s helping.

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” 
― Mary Anne Radmacher

The photo above was taken by me during Day One of my last period on May 2, 2018.  Although it is a posed image, it also wasn’t at the same time.  I set up my camera, the pill bottles, the tea, the heating pad, and then clicked the “self-timer” button.  As soon as the shutter released, I remained in that position most of the day.  I wallowed in my pain and sorrow.  The next day, I was able to go to work (still medicated), but able to actually get in my car, drive to work, and function.  The next day was slightly easier.

Whatever we are going through, we will make it.   Today may seem hopeless or dark, but keep putting one foot in front of the other – every day.

And we can persevere together.

Love you guys.  Have a great weekend.  And find that courage to keep moving.

 

Blogs I Updated This Week:

Dungeons & Dragons & Donuts: How RPG Games May Help With (Fill in the Blank) – added our April campaign.  Our adventurers find themselves at a masquerade ball…bunnies, meatballs, the chicken dance…it was a wonderful caper! Our next session will be Sunday, May 20, 2018!

Have You Seen the Endometriosis Commercials on TV? – the FDA has extended the time they need to review and approve AbbVie’s Elagolix and data regarding liver function testing.

Share Your Story: Amanda

Amanda learned she had Endometriosis when she was 27.  Now 33 years old, she shares her story with us.

Amanda’s Journey:   In mid 2011 I started to have pain in my lumbar area, down my butt and thighs. (Sciatica). I thought it was a pinched nerve cause I broke my back in a car accident in 2007 had a fusion and found a lot of issues with the spine. Every period I had the symptoms, the pain got worse. Seven months went by. My primary didn’t listen to me thought I was exaggerating. Because I am young I should be fine. On the 7th month, the pain got really bad. Constant throbbing and sharp radiating nerve pain from my butt to my toes. I could not sleep and was pacing all night in agony. I was still working and side note I didn’t call out once and I was a cashier at a gas station. So I had to be on my feet 8-10 hrs a day. Strong chicca. I was getting ready for work and I kept laying down and trying. My stomach was so swollen and I realized I haven’t urinated for 2 days. It took my mom and husband to convince me to go to the ER. They removed 700cc of urine. They found a blot clot in my spinal cord and a mass. Lumbar area and clot was in the thoracic area. Was in the ICU for 3 weeks. I have permanent damage for not listening to my body. The nerves never recovered for being crushed. I have neuropathy pain all the time. I did hormone therapy for 6 months after first surgery but the mass grew back again and this time I lost control of my urine and bowels. I had to have surgery again. This time I learned more about my condition. UCSD hospital did a case study about me. Since the cancer is rare and even more rare in the lumbar spine. I am currently getting Lupron injections to control the mass from growing. This is my 4th round of Lupron. I don’t have the bad pain but I feel it more and more. My oncologist did not want to do radiation because he has never done it on this type of tissue and in this area. So I am stuck with having a wall of tissue stuck in the nerves and possibly grow and grow. So I have been truly scared to go paralyzed. My life has changed, I am not very active like I use to be. I can’t walk long or even sit. I can’t lift anything. I use to run upstairs not now it takes me forever because lifting my upper body is to heavy for my legs. I am very weak. I use to cry a lot. But now I am getting stronger and not let it control me anymore. It’s hard.

Words of Advice: Keep being positive, dont’ give up.

If you would like to contact Amanda, please feel free to e-mail her.

I want to send a special Thank You out to Amanda for being brave enough to share her journey with us today!  Best of luck with your ongoing treatment!    ❤ Yours, Lisa.

downloadAnd 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: Kathryn

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Kathryn was diagnosed with Endometriosis when she was 30 years old.  Three years later, she found our blog and wanted to share her story with us.  It’s a heartbreaking and devastating tale, but one many of us can relate to.  And she will continue to hold her head high, undefeated.

Kathryn’s Journey:   I suffered a horrible car accident in July almost three years ago. The bruising from the seat belt was so bad it took months to heal. Then, in December six months after the accident, I collapsed at work in crippling pain and had to go to the hospital. There they found cysts on my right ovary and uterus. One week later, my gynie is telling me a protein in my blood that detects ovarian cancer which should be no higher than 2 was 171. The next three months I was in a horrible nightmare of doctors telling me I would need a hysterectomy and chemo and would be fighting for my life. I had to make the agonizing choice of pulling my organs out when it wasn’t really a choice at all… And I did it with peace and as much grace as I could. Another month later, I underwent surgery. When I was awake after the tumors on my ovary had been benign and what it had actually been was severe endometriosis. He cut it out, but refused to remove the pipes causing it. When the surgeon told me it would be back, I sobbed… I don’t know why… But I was devastated. Six months later the pain returned. I had been fully cut open from stem to stern the first time. The second time they did a laparoscopy. And discovered the ovary that had the tumor developed a blood cyst that had engulfed the entire ovary. Worse, my fallopian tube was now being twisted and pulled into the same ovary. My gynie did not realize what he was getting into as the sonogram didn’t show much… But he said my tube should be a twizzler and my ovary a walnut. Mine had become a churro and a softball… Two surgeries, six months apart, with no help or sympathy from my now ex-husband… And they still wouldn’t remove all of it… I wanted to have a child of my own but…. God had different plans for me… It still hurts… And now it’s back. I found Lisa’s blog and was overjoyed I was not alone… That the bitterness and hatred of this disease is shared by many sisters. But I can’t do this any more. I want my life back. My endo was so bad it made a blood test show insanely positive for cancer. And the real kicker is that when I was suing the bastard who hit me in that car accident… My insurance company told my lawyer that it sounded to her like a blessing in disguise… I may never have found out there was a problem if I hadn’t been STRUCK by a car. The cruelest part is her daughter was going through chemo for ovarian cancer herself…. I want the pain to stop. It hurts knowing I cannot have children… And I am devastated when I ask myself “why me!” I had been fine up until that car accident… And since then… I’ve had nothing but pain bitterness and rage… And yet, I march on… Because I will never give this Despicable disease the satisfaction of beating me… EVER.

Words of Advice:  Go to your gynie regularly and make them aware of your symptoms and pain level. Try to exclude as many triggers as possible… I am a migraine with aura sufferer and cannot have hormonal birth control which is one of the best defenses against endo… But do not give up and find a community like this one that offers support and love for all suffering and dealing with this devastating disease. Never let your doctor downplay your pain or your gut feeling. If they don’t help you then find someone who can. Don’t suffer alone… I thought I was alone… But this blog showed me that I really am no less a woman and no less beautiful even if my plumbing is yanked out. And remember… YOU ARE FABULOUS!

The Last Word: Please keep writing and updating your blog. I found it just by searching if alcohol affected endometriosis. You gave me more information about my health than my doctor ever did. Thank you… So much! And I love the blogs name.😊

If you would like to contact Kathryn, please feel free to e-mail her.

I want to send a special Thank You out to Kathryn for being brave enough to share her journey with us today!  You are NOT alone in this, and you never will be again.  You have my e-mail address…and I’ll forward you my phone number.  Please feel free to use both as often as you wish.  Much love.  And sending hugs and smooshes your way.   ❤ Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Feel Good Fridays

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Good morning and happy Friday!

I received very disturbing news this past weekend.  A family member of mine has been diagnosed with Stage 4 cancer; inoperable.  He has been given two to four months to live, if that.  And as I try to remain hopeful and positive thanks to modern science and medicine, I am grieving.  He’s not even dead, and I mourn.  So I looked it up last night…and it’s called Anticipatory Grief.

Denial.  Anger. Bargaining. Depression. Acceptance.

These are the usual five stages of grief, and they are also the stages of anticipatory grief.  They can come in any order. They can float back and forth and repeat themselves.  My mind wanders from memory to memory, each bringing laughter or tears.  Then I’m hit with other realizations: who is next: how much time do I have left with friends and family before they, too, are swept away?  And my priorities change.  Rather than fill my days with Netflix, videogames, or naps, I want to flood my hours with time with family and friends.  I feel guilty for all of the missed time…I beat myself up for not making more opportunities, driving out to visit, or just picking up the damn phone.

And the cycle begins anew.  More memories, more tears, more guilt.

I’m driving out this weekend to be with family, to visit my Uncle, and to try not to cry in front of him…In fact, by the time you’re reading this, I’m several hours into my drive already (thank goodness for being able to schedule a post…)

But, while reading about Anticipatory Grief, and feeling far more normal now that I knew it was a thing…I drew comparisons to being diagnosed with an incurable, chronic illness: the maelstrom of emotions and stages, the lack of control, the shift in priorities.  And it led me on the search for a quote to share with you.

And I found this one.

“You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.” 
― Anne Lamott

And I shall hold onto it, dearly.  In fact, I will embrace it.  Twenty-one years ago I lost my grandparents. They died two days apart from each other; we like to think they could not bear to be apart.  But the void created by their deaths has never been filled in my heart.  And now I know why: because “they live forever in your broken heart that doesn’t seal back up.”  And I think of them all of the time.  And the same shall be true for my Uncle, whenever his time may be.

And when my Endo flares back up and rears it’s ugly head, may I hold my head up high and dance with a limp.

And I hope that you, too, may accept the loss you face (whether it be a death, or a disease, or a disappointment), heal, and dance with a limp.

But dance we shall.

Love you guys.  Lisa

 

An Update: Endometriosis in Cynomolgus Monkeys

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Last year I wrote about a study involving Endometriosis being found in Cynomolgus monkeys.  Recently, a new study was published in Human Reproduction about those monkeys and Endometriosis, and here I am to regurgitate it to you in my layman understanding.

At the Tsukuba Primate Research Center in Japan, 614 female cynomolgus monkeys were evaluated between 2008 and 2012.  Of those, 29 were chosen to be screened on a routine basis, including monitoring menstrual cycles, fertility, bloodwork (including CA-125 levels), and physical examinations.  Surgeries were performed and 15 of the 29 monkeys had surgically confirmed cases of Endometriosis.

Let me repeat that:  fifteen of the 29 monkeys had surgically confirmed cases of Endometriosis.  These monkeys were not implanted with Endometriosis as lab rats often are.  It grew on its own.

These 15 monkeys ranged in age from 8 years old to 20 years old.  They discovered that CA-125 levels tended to be elevated in the monkeys that had chocolate cysts present and lower in those who did not have endometriomas.  They also discovered that painful palpation examinations and abnormal feces were both commonalities with these monkeys.  Also of note, the monkeys ate less food during their menstrual cycles, which may be attributed to increased pain and a decreased quality of life.

During the time of the study, the remaining monkeys who did not have Endometriosis were monitored to make sure they did not develop the illness.  Four of them DID develop Endometriosis!

Even though the monkeys were small in comparison to humans, the surgeons were able to easily identify Endometriosis lesions (and their various colors: red, pink, brown,  blue, black or white), endometriomas (chocolate cysts), and adhesions while performing the laparoscopies.

Based on these findings, the authors suggest that screening, diagnosing, and monitoring Endometriosis in monkeys should include palpations, fecal monitoring, and CA-125 testing.

The findings of the study were that cynomolgus monkeys with spontaneous endometriosis may prove to be a good model to evaluate the disease, as well as drug efficacy.  I would hate to think that that means they may one day end up as lab rats for drug companies.  My animal-lovin’ brain takes me down that dark path, though.

I am constantly amazed by the presence of Endometriosis in non-humans.  And saddened at the thought that these animals cannot vocalize the pain I know they feel.  But knowing that the illness affects other species makes me hope that it may one day get the attention of the scientific and medical communities that it deserves.

RESOURCES:

Human Reproduction –  (April 2018) – Spontaneous Endometriosis in Cynomolgus Monkeys as a Clinically Relevant Experiment Model

~ 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

 

 

An Email from Christina

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Last week was a very difficult week for me.  I had been suffering from Endo pain, PMS, and cramping since April 30th.  My period started on May 2nd and lasted until May 8th.  Of those 10 days, eight of them were incredibly difficult.  I want to say “unbearable,” but…with proper pain medication, heating pads, comfy clothes – it was bearable.  I may not have been functioning very well, but I didn’t die.  I’m still here.  And the pain has ended…for this round.

Thank you to everyone who shared words of encouragement and support, especially after my Feel Good Friday’s post…which I don’t even remember writing. Ha!

But I wanted to share a series of emails with you today that I received during that time.  I found it uplifting during the hardest days, and it helped me (and will continue to help me) hold onto hope.  Christina has given me permission to share these emails in case it also grants you, or someone you know, much-needed encouragement and hope.  I look forward to meeting her.

May 3, 2018, 10:07 p.m.:

Hello Lisa,

I hope you are doing well.

I had the pleasure of reading a page in your facebook page about your journey with endo and your creation of a support group.   I was involved in one many years ago myself, and admire the leadership it takes to start one from scratch yourself.

I am a 50 something year old survivor of Stage IV endo who also lives in San Diego.
I endured 3 surgeries battling this disease, 1 of which was 11 hours, was in hospital for 16 days with that one,  and I lost a large part of my colon, among other bits.

I remember all too well the isolation at work and missing so many special events with family.  The “excuses” that I made to excuse myself from many social situations due to pain and food intolerances that some people rolled their eyes at because of their ignorance of me not dealing with “period pains”….  I remember the intense physical pain, the fear of not being able to be “surgically or medically repaired”, the depression and despair from hopelessness and helplessness, the pain with sex, painful bowel movements, the flood like bleeding and shooting pains down my thighs constantly,  the food allergies and IBS, the shame of not being able to bear children or function like my coworkers, I could go on, but I think you and all those with this disease can relate.

I am so glad to see you reaching out to learn from and help other woman struggling with endometriosis and all its cascading issues to connect with one another and support each other.

It is huge to be able to talk to someone who understands your journey.

Mine was a very rough 12 year ride, BUT I am fully well now with NO pain, and have a good life with my hubby of almost 30 years.

I am a certified Zumba instructor, a creative being, and enjoy meeting people and sharing my message of restoration.

I am happy to share my message of hope to all woman and young girls, dealing with this disease who feel worthless and hopeless.

My message to you is don’t give up!  There is hope!   I am evidence of it.

xxx Christina

May 4, 2018, 12:25pm:

Hi Christina!

Thank you for such an incredible email!  I love it when local’s reach out 😀

I am SO happy to hear you are no pain-free and living a wonderful life with the Hubs! May I share your email on my blog and on our private Facebook group?  I really needed to hear it today, as I’ve been going through an incredibly painful last seven days. ❤

Thank you, Christina.

PS – Where do you Zumba?  I’ve put on a few extra pounds due to my inactivity and would love to shed ’em in a fun way with someone who knows what we go through. ❤

May 4, 2018, 3:34pm:

Hi Lisa,

I was teaching Zumba in a dance studio I rented in Del Mar, but I live in Scripps Ranch now so I am speaking with a dance studio up the road from me about renting from them twice a week.

Zumba is fun and doesn’t feel like a chore. I am not a gym rat and I don’t like treadmills (my add mind goes mental with one direction for 30 mins!)

Please do feel free to share our communication/conversation on your site. I am glad my email encouraged you and I hope it does for others as well.

My first surgery was 5 hours, next was 11 hours with a bowel resection, 3rd was around 2 hours for hyst. Each time my organs were glued to each other like a ball of wool (adhesions)…

I am sorry you have been having pain, and I do hope this pain phase passes soon.   Red Raspberry leaf tea used to help me, and DRY (soy free) Vitamin E Avoid Vit E oils which often are soy based – used to help me a lot.  I took 400iu a day  (Vitamin shop sold the only Dry form of Vit E when I took it ). Hot water bottle wrapped in a pillow case cover so doesn’t burn your skin helps to relieve the muscle pain.

Stay away from soy. It is the enemy of those with endometriosis. I always avoid soy in any form – flour, tofu, fillers, oils.  This article includes many of what I figured out I should take years ago that helped me
https://naturalon.com/15-natural-methods-to-deal-with-endometriosis-12-is-super-effective/view-all/

I remember that was so hungry for hope when I was at my lowest low.  I had many lows, but one very memorable one…

One really desperate time in my bedroom, I was rolled up in the center of the bed in a fetal position, and through heavy sobs I actually prayed and said to God that if He wasn’t going to heal me, to just let me die…

I mean that’s pretty scary mentally that I got to that point.  But many girls do.  Some young girls even commit suicide in despair, especially after hysterectomies when they are unmarried, and know they will be unable to provide children to a future spouse.

Some healthy marriages even break apart because of the constant drama that endometriosis brings to the party.  Those guys forgot the “in sickness and in health” of their vows!

It’s truly heartbreaking!  And even thinking about how I felt,  knowing these are common thoughts others feel, still brings tears to my eyes.

Anyway, my breakthrough came very soon after that desperate prayer!  I was transformed into the new me! Hopeful, rearing to go again.

I had that third and last surgery with Dr Redwine in Portland, Oregon in 2010, and he MIRACULOUSLY found NO ENDOMETRIOSIS!

A BIG mystery since it was noted that they had to leave a substantial amount of endo lesions on my already resected bowel, on my previous post op report (by a Dr he personally knows very well in Atlanta – Dr Albee another expert)…

Only fibroids were found outside my uterus, which I’d instructed him prior to going under anaesthesia to just remove my uterus, since I had decided I was done with trying to have kids unsuccessfully.

I was shocked at hearing this excellent news – I was ecstatic! A miracle?  Also lifestyle of avoiding ALL soy, eating organic and only grassfed meats among learning A LOT about health issues and foods etc.

I am VERY grateful for Part 2 of my life! Even 8 years later.

My personality is a go getter. I am a hyper Italian woman! J And this disease KNOCKED me to my knees!

The good thing it taught me was a deep and real authentic Compassion to those who suffer in ANY capacity.

My heart aches when I see ANY suffering.

This Endo experience journey – as rough as it was, brought that type of kindness to my heart and soul in an experiential way that cultivated love in me, that I would likely have never developed without this journey.

In life most of what we learn comes from EXPERIENCING things – good and bad.  We don’t ENCODE information as well just “reading” about it, as much when we actually LIVE it or DO it…So to FEEL and Experience pain makes the issue or lesson, very relatable and tangible.

This pain stretched me way beyond my comfort levels in many ways.  As an independent “Type A”, go getter, who didn’t like to ask for help, or admit weakness – it forced me down a path of needing help – of being vulnerable to my hubby and family….and MANY more people I didn’t want to be “weak” around – like a few non compassionate, catty colleagues.

My hope having gone through the transformative Endo fire is that it will benefit all those I interact with my life in some way, by not just exercising empathy, but heartfelt compassion, that’s come from a place of a shared pain experience.

Please do share this and the previous email.   Women need to know healing is possible.  I am restored and rearing to live again!  I stand a high, on the mountain with my arms raised up in victory – where I hope you too will be someday soon too!

Maybe we can meet for tea or coffee sometime soon if you would like, or zumba.

Much love and healing to you.

Warmly,
Christina

**

Feel Good Fridays

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Another week has passed.

It’s been a tough one for me.  Since last Friday, my pain has been bad, or barely there, or back to horrible, then back to barely there…but the majority of the past seven days, I’ve been in pain.  My heating pad has been with me every day, both at home and at work.  I’ve taken some form of pain medication every day.  I started my period (finally) on Wednesday and am riding that wave.

Awful period cramps, lower back pain, pain when pooping, and pain when peeing.

My ultrasound on my birthday found a small cyst on my left ovary.  A suspicious one.  We’re going to keep an eye on it and I go in for follow-up ultrasound in two months.  Possibly an MRI following that.  And depending on that outcome…a long talk.

A few Sisters of mine have also expressed a feeling of “it will never end” this week, and I can wholeheartedly feel their anguish.  Their thoughts are my thoughts.  I mirror their fear.  But I am trying to remain positive.

I don’t have any quotes for today. I’m mentally and physically wiped out.  Do you have one? What’s your favorite “pick me up” quote? Share in the comments below.

And have a good weekend, you guys…Love, Lisa.