I need your help…

SOS

So this upcoming Thursday I have an appointment with my gyno/surgeon.  On January 15th, I will have my last Lupron Depot injection, and afterward will have a sit down with my physician to discuss what’s next.  I last met with him four months ago to discuss how I was feeling after my surgery, and what to expect in the future.

At that time, we discussed continuing the Lupron Depot injections for the full six-month course (which I’ve done) and after the completion of the injections, going onto a continuous birth control pill to help control the Endometriosis growth and pain.  He said the choice of B.C. was up to me, and after a lot of research and talking to friends who are nurses and attorneys (who have handled several mass tort cases against certain birth control pills), I’ve decided to try taking Lybrel (generic name Amethyst).  If B.C. doesn’t help with the pain, he ultimately feels a hysterectomy would be the best choice.  After all of the reading and research I’ve done, though, we all know it’s not a guarantee…

But what do I need from you?  I’m working on generating a list of questions to ask him during our appointment.  I know me, I’ll get so flabbergasted by all of the information that I’ll forget 50% of the questions I want to ask. So I plan on printing them out and walking in with a list.

If you can think of any additional questions you think I should ask, please feel free to drop me a comment below! And thank you!!!

Here’s the list of questions I’ve created so far:

  • How long until the Lupron Depot is out of my system? I know the medication is supposed to last one month, but when will the side effects go away?
  • I have about 38 Northindrone pills left (8 in current prescription; 30 for next month).  Shall I continue to take them each day until gone?
  • Will menopause be as bad as it was on Lupron Depot? Or was that magnified due to the chemical inducement?
  • When do I start birth control?
  • How long will I have to be on continuous birth control?
  • I know that women over the age of 35 should not take B.C., or be monitored while taking it. What sort of regular monitoring will we need to do?
  • I’ve heard B.C. can cause cysts and/or even cancer.  Is that true?
  • I understand I will have breakthrough bleeding or spotting while on continuous B.C.  How bad will it be? Predictable?
  • Will Lybrel/Amethyst be bad for me because of my Gilbert’s Syndrome? What about the Endo on my liver?
  • If I don’t like Lybrel/Amethyst, when can we try something else?
  • If I can’t stand B.C. at all, what’s another option?
  • If I do need a hysterectomy, would it be partial, total, or radical? Remind him of my history of abnormal Paps.
  • If I do need a hysterectomy, can we do it without transvaginal mesh?  TVM has ongoing mass torts…
  • If I do need a hysterectomy, will I have to go on Hormone Replacement Therapy?  If so, will the estrogen make the Endo grow back quickly?
  • Assuming my next appointment will just be for my annual pap? Or will we schedule an ultrasound?
  • When will I know if we need a second excision surgery?
  • I’ve changed my diet hoping to help keep symptoms tame.  I’ve also started taking supplements (Omega-3s, Folic Acid, Calcium+Vitamin D, Milk Thistle Seed Extract).  Anything else I can do naturally to help?

I’ll likely overwhelm my doctor with questions, but he has incredible patience, understanding, and has always listened to me.  I adore him and his staff and am looking forward to our meeting.

But again, if you have any suggestions for further questions, please drop a comment below.

Always yours, Lisa.

Share Your Story : Josi

bigstock-Don-t-Give-Up-Phrase-On-Blackb-4003414-300x200Josi is 19 years old and lives in Torrington, WY.  She was diagnosed with Endometriosis just two months ago.  Like so many women, just knowing there was a cause to her pain gave her a little bit of peace of mind and she has begun her journey toward relief.  Josi hasn’t let this pain stop her from living, as she recently married the love of her life and is moving forward with hers!

Josi’s Journey: I started vomiting constantly and experiencing bad pain at 11 years old. I thought it was anxiety, and didn’t get it checked out for a couple years. At 14, I finally had a scope done to reveal a hiatal hernia. I thought, “finally, this is the cause!” And began taking prescribed medicines for acid reflux and IBS. Nothing helped. Another scope. Nothing new.

The doctors then thought it must be my gallbladder, or my stomach emptying too slow – and thus began tests and CT scans and swallowing of awful liquids. Nothing. December 27th, 2012, my gallbladder came out. And everything got worse. Now all the food I eat gives me diarrhea and I get nauseous. Six months later, I was sent 9 hours away to a surgeon who performed a partial Nissen Fundoplication – he wrapped my stomach around my esophagus on June 4th, 2013. Finally, after six years, I could lay down without vomiting (I used to sleep sitting straight up.) This was supposed to fix everything.

I then got engaged to the love of my life and married on July 5th, 2014. The pain had been growing, and now I couldn’t work and was in bed often, with my hot lamp and recurrent hot baths. An old therapist referred me to a women’s clinic and I eventually had my diagnostic laparoscopy on October 29th, 2014. “Endometriosis Confirmed.” Yes! An answer! Pain will be better now, she scraped the tissue out!

It is now almost New Years and pain is still horrible, I am almost halfway done with Lupron Depot. It is a horrible drug, and hasn’t helped yet. I am so elated to know where my pain has been coming from for now 8 years. The problem I thought was fixed was actually 2 problems, one fixed, one still in hiding. I am frustrated, confused, and utterly and demonically hormonal, but I have hope. Now that I have the answer, I can begin this journey to relief.

Words of Advice for Us: Don’t give up. Surround yourself with people who BELIEVE you. My mother doesn’t want to hear about any of this. So I have to be careful with her. That’s okay! Realize that some days, it is okay if you don’t clean the whole house or climb a mountain. You are breathing, you are alive. You are a conqueror by doing so.

The Last Word: It has been life changing to open up to other women who suffer the same thing. I have friends who “have been there.” So, when they tell me that it will be okay, I can believe them. Don’t be afraid to open up! ♡ All my love and support.

If you wish to contact Josi, you can send her an email: jackson.josi14@gmail.com

I want to send a special Thank You out to Josi for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  Thank you!!!   Keep us posted on your Lupron Depot treatments, hun.  I’ve got one more injection before I’ve wrapped mine up; just know that it gets a little bit easier as the months go along…

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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.

Liquid Crazy Injections Update

lupronFor anyone who read my Liquid Crazy Injections post (found here), you’ll know it’s all about Lupron Depot injections to help treat Endometriosis.  At the time, I had posted about the horrible body aches, etc.  I’m now 2 weeks into Month Four of my injections (2 left!!) and wanted to let anyone know who may be reading this that the body aches haven’t reoccurred since Month Two.  It was two months of agony, and so far these past two months have been bearable.

Now my side effects are only fatigue (I mean, PURE exhaustion), dry eyes, always thirsty, dry vag (TMI?), lack of sex drive, slightly bigger boobs, endless appetite, and mood swings.  I haven’t had ANY Endo pain since I’ve started.  And I haven’t had my menstrual cycle since September 25, 2014.

My next injection is December 18th, and my last injection is January 15th!  It hasn’t been easy, but I would do it again if I needed to.  Don’t let my first post scare you into not getting the injections.  You’ll have to weigh the pros & cons yourself, do your own research, talk to your doctor, talk to other Endo Sisters.  For me, this has been worth it.  For others, not so much.

Light at the end of the tunnel.  I cannot wait to have my energy levels (and sex drive!!) back! ❤

If you’re thinking about Lupron Depot injections and have any questions, I’d be happy to help! 🙂

~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

Readers Choice : The Spoon Theory

spoon
A photo I took years ago finally has a purpose.
Christine Miserandino came up with The Spoon Theory.  You can read her article, here. It is gut wrenching.The Spoon Theory was Christine’s way of explaining to her friend what life with Lupus is like. It’s a metaphor for our stamina and energy: any task you do during the day uses up one spoon.  You only have 12 spoons…so you must choose your tasks wisely, or else you run out of spoons…and steam.  For those of us with Endometriosis, the Spoon Theory still applies.  Any chronic illness, especially one that causes pain and fatigue, can use the spoon theory.  My Spoon Theory experience truly took shape this weekend…I not only blame my Endo, but my Lupron Depot (which has morphed me into a walking zombie!)
zombie
My beau and I had to go grocery shopping on Saturday and went to Costco.  For those of you not familiar with Costco. it’s a warehouse-style bulk store, with endless aisles and endless people.  After being in Costco for about an hour, and walking down nearly every aisle, I was completely exhausted.  And our shopping wasn’t done.  We then hit a grocery store, which I barely made it through.  One more store was on our list, but I had to send the man in alone as I rested in the car.
costco
Costco

As soon as we got home, and the groceries were put away, I was on the couch the remainder of the day.  A lump. We went out for massages that evening, which helped with the relaxation, but I was so exhausted I took a nap on the table.

Then today arrived.  We stayed in bed until 9:00am, woke up and had breakfast and watched a movie.  Once the movie was done, I had to take an hour-long nap.  Woke up from that and sat at the computer after eating lunch.  About an hour passed, and I had to relinquish again, “Hun, I have to go lay down…” and proceeded to nap for the next four hours.  I’ve been up for two, and already want to just lay down and sleep again.
I haven’t done anything today. Not one thing. But I feel like I’ve used up all of my spoons, and then some. And it’s like this, every day. And I’m worried about next weekend, when I have a “full day” planned with girlfriends.  Hopefully, I’ll have a full arsenal of spoons that day!
spoons
I’d like to think the exhausted symptoms are so exacerbated because of the side effects of my Lupron Depot and Add Back medications.  I’d like to think I’ll have my life back when these treatments are concluded.  Only time will tell.
If you’re reading this and you suffer from Endometriosis, you have my sympathies.  If you’re reading this and know someone with Endo, please practice some patience with us.  Try the Spoon Theory experiment for a  day. It may offer you new perspective.  Our bodies are our worst enemies and sometimes they win.  Today, mine did.

* Sundays are “Readers Choice” days! A topic is chosen by a reader, and I blog about it. Today’s topic came up in a phone call with my Mum, Linda.  After talking about it, I figured I’d blog about it. Thanks, Mum!

Liquid Crazy Injections

lupron

In August of 2014, I began my Lupron Depot injections.  What is Lupron Depot? I affectionately call it Liquid Crazy.

What is Lupron Depot? It’s a drug that stops the production of Estrogen and other hormones that cause Endometrosis implants to grow, scar, and spread.  It is also supposed to shrink any implants and adhesions that may still exist in my body since my surgery.  What does that mean for my body?  It throws me into temporary menopause, as well as other side effects.

I am now in Month 3 (out of 6) of my treatment.  Hopefully the worst of the side effects are over.  During the first two months, I’d have weekly full body aches, so bad that I’d have to stay home from work.  Every little joint and movement hurt horribly.  Now in Month 3, the aches have seemingly ceased, but I still find myself completely exhausted, all of the time.  I am quite … tearful, often, at the slightest things! (augh!) I now have extreme sensitivity to the sun, and have to constantly wear sunscreen and giant floppy sunhats.  My EVERYTHING is dry (eyes, mouth, throat, skin, other…bits) and lotions, drops, and lube offer little solace. My sexual appetite has nearly vanished, which sucks! And when we do have intercourse, it has to be with a condom and lube (now that’s romantic…). I also suffer a bit of nausea every morning after taking my “Add Back” pill…And, yes, I do have hot flashes and night sweats.  But the joyous side effect? I’ve finally stopped having my period (yay for Month 3!).  And hopefully the Endo has either completely stopped it’s growth for now, or at least slowed down.

My next injection is on November 20, and my last injection will be on January 15.  I am really looking forward to the end of February when the last of the Lupron is out of my system…and we can move on to the next course of treatment.

While on Lupron, I am also taking Norethindrone, referred to as the “Add Back” pill.  It helps counter some of the more devastating effects of Lupron, like bone loss, and literally “adds back” some of the good hormones that Lurpon is stripping.

All in all, the Lupron injections have been worth it for me.  I have no regrets about starting, nor continuing, the treatment.  However, many women have far worse experiences and side effects.

Have you treated with Lupron?  What were your experiences?

Are you about to start Lupron and have questions? Please feel free to pick my brain.

And thank you for reading my daily rambling. 🙂 An update on my treatments with Lupron Depot injections, including how the side effects have changed, can be found here.

I can’t eat WHAT?!?

pyramidSince my June 30, 2014, surgery and diagnosis of Endometriosis, I went on a radical journey to find out how I can help my body fight this disease, especially while I was waiting for the insurance to approve my treatment regimen.  Several books and webpages pointed out the same facts of what foods to avoid, and which to devour!  So, overnight I made a decision : to do a 180 degree flip on what I did, and did not, eat.

Some say the choice and change was too rapid.  I should have eased into it, rather than cold turkey’d it.  I agree now, but hindsight and all of that jazz.  Regardless, I feel SO much better.  I don’t know if it’s the dietary change, or the Lupron Depot injections, or both, but I do feel a lot better.

I no longer eat the following foods, with a short (aka layman) explanation of why (keep in mind, these are pretty much ALL I ate prior to my diagnosis):

Wheat : contains gluten and phytic acid, which can aggravate symptoms of Endometriosis

Red Meat : causes increased inflammation and hurts digestion (also may contain crazy amounts of hormones)

Refined sugars (including juices and sodas) : causes inflammation and further aggravates symptoms of Endometriosis (I can’t cut this out ’cause it’s everywhere, but I do make a conscious effort to cut back…)

Caffeine : causes abdominal cramps and increases estrogen levels

Chocolate : contains sugars and caffeine

Dairy : causes inflammation (also may contain crazy amounts of hormones)

Alcohol : muddies up the liver (I haven’t cut this out, but I have drastically reduced.  I no longer drink beer and only enjoy 1 glass of white wine when I do drink)

So what do I eat?!?  Well, I severely miss my cheese and cupcakes and ice cream and frozen yogurt.  But have quickly gotten used to life without red meat and caffeine!  Surprisingly quickly!  I do eat a lot of turkey, chicken, fish, leafy greens, beans, fresh veggies (there’s a whole new realm of cooking out there!!!), and enjoy a wide variety of gluten-free pastas and baked goods.  I’ve also substituted coconut milk for regular milk, and enjoy cooking with coconut oil rather than butter.  About the only drink I have now is water.  I do enjoy 1 glass of white wine at night, and also 1 cup of an herbal (non-caffeinated) tea in the morning. I’ve had to budget in some extra money for the grocery budget every month, but it has been totally worth it.  And Farmers Markets and supermarket sales have been a god-send.

I also enjoy a nightly tea made of lemon juice, sliced ginger, honey, and water.  It not only helps with indigestion and inflammation, but is incredibly soothing and is the perfect “relaxy” drink right before bed.  Recipe and more info.

I also take daily vitamins and supplements, which include Omega-3 Fish Oil, Milk Thistle Seed Extract, Folic Acid, Calcium + Vitamin D3, “Hair Skin & Nails Support,” and Norethindrone (an add-back hormone for my Lupron Depot treatments).

I’ve lost 10 pounds since my surgery, and have kept it off.  I rarely have any headaches or back pain EVER.  And my cramps and discomfort of Endometriosis are gone (again, this could be due to the Lupron Depot).  I am looking forward to continuing this diet once my Lupron regimen is over (late January 2015) to monitor my symptoms and progress.

I have fallen in love with two resources for dietary information: http://www.endo-resolved.com/diet.html and http://eatendohappy.com.

What have YOU found that works well for you?  What foods to you love to devour? What foods did you cut out? Comment and share below!

And if you made it all of the way to the bottom on this blog, Thank You!