It’s coming.

Well, I had my ultrasound today with Dr. Kurtulus.

And we talked for about 30 minutes afterward. My suspected chocolate cyst has grown another 1/2 centimeter, which wasn’t distressing to him yet. But we discussed my journal, my symptoms, my pain, my concerns, my vacation plans, and a possible hysterectomy.

If I opted to go to Burning Man this year, I’d deplete any vacation time if I needed surgery later this year. And be left with no option but to suffer until next year when my vacation time renewed. And who knows what can happen in six months…

Due to my pain levels as of late and my progressing symptoms (and growing cyst), there’s no time like the present. Why delay? Me first? As my cousin whispers in my ear each time we hug, “You be good…to you.”

I asked about a hysterectomy. Jim and I aren’t planning on having children. And although it’s not a cure, it may help with a large part of my pain every month. After lengthy discussions of pros and cons, as well as several doodles of my fancy dual-cervix and septated vaginal canal, we shall wait on the hysterectomy. My bits are complicated.

So, in a month or two, we’re gonna peek under the hood and have a look.

The chocolate cyst will be removed.

Any Endometriosis lesions will be excised. (Assuming he finds any)

Any adhesions will be freed.

And my anatomy shall be restored as best as possible.

Now what about this new under-the-rib pain that I’ve been enduring for the past two weeks? He knows, as do I, that I have Endometriosis on my diaphragm. It was one little spot, as memory serves. But he’ll do his best to analyze the underside of my diaphragm while he’s poking around my pelvic cavity…And we’ll discuss future surgical options (which would require the skills of a cardiothoracic surgeon) from there if he feels that it may have worsened or migrated.

Going in today feeling strong about that pending discussion made it easier to walk out with a smile on my face. And I could be in no better hands than his. He has my utmost trust and respect.

But it still takes the wind out of my sails, so to speak.

I called my husband. Then my mom. And my work was very understanding. I’ve told a few friends. And I’ve formally canceled my Burning Man plans.

But here I sit. Blabbing and letting it all hang out. I want to throw up. I want to cry (hell, I am crying). But I still feel strongly that this is the best decision for me right now. And if he opens me up and doesn’t find any Endo, it will open up avenues to explore what is causing this pain.

I love you, Sisters and readers.

I hate this disease.

It May Be that Time Again…

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Oh, the thoughts you have when you’re contemplating another surgery for Endometriosis…and possibly a hysterectomy. Yes, I know it’s not a cure, but it would free me of periods and a cramping uterus. I’ve always said that if I need a third surgery, I’ll opt for a hysterectomy. I’m on the cusp of being 40-years-old…menopause is close enough at this point and my husband and I don’t want children at our age…

Last night was the eve of my transvaginal ultrasound. From my May exam, it was confirmed that I have what is suspected to be an endometrioma on my left ovary. If it’s not a chocolate cyst, it’s a dermoid cyst…which is the same reason why I went in for my first surgery in 2014…and *poof* received my Endometriosis diagnosis. And since June 7th, a new pain has manifested. A brutal pain that has reared it’s ugly head nearly every day since. And spawned me to move my ultrasound up to today. Very soon…at 11:45am, I’ll be in a chair, feet up in the stirrups, and a magic wand shoved up my hoo-haw.

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After thoroughly reviewing my pain and food journal, evaluating triggers and identifying patterns, and having a long discussion with my husband…I’m going to pop the question. “What about surgery?” Already. It appears I have a two-year track record for this sort of thing…2014…2016…and now 2018. That means canceling vacations and altering plans. But it’s worth it. The quality of life that excision surgery has granted me twice before has been worth it.

Then, compare my pain charts from August 2016 (right before my 2nd surgery) to June 2018. I was literally flabbergasted at the similarities…

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As I verbally vomited all of my thoughts to my husband last night, I flat out stated, “I want someone to tell me what to do. What would you do if you were in my shoes?” He looked at me…and turned it around. “Lisa, if I were an EndoSister and just told you all of this, what would you tell me to do?”

That settled it. In one fell swoop, “I’d tell you to go have a look under the hood…” And immediately I was at peace. A weird sort of peace…the resolved peace where you now have a direction to go, but the absolute upheaval of emotions of what that brings. Along with the doubts, the What Ifs, and the Emotional Rollercoaster…

“What if my surgeon says no?”

“What if they don’t find any Endo?”

“What if it’s progressed deeper into my diaphragm and they can’t see it?”

“Do I ask to keep an ovary? Which one?”

“How bad will recovery be this time?”

“How long will relief last?”

“What if it’s all in my head and I’m making a mountain out of a molehill?”

“If there’s no Endo, what IS causing my pain?”

“Maybe I have Adenomyosis and nobody knows yet.”

“What if I cause more adhesions with surgery?”

“What if it never ends?”

And as any of you fellow bloggers know: writing about this makes me feel a little better. And knowing that my words may reflect what another reader is enduring…and knowing that we’re not in this alone makes each of us stand taller.

Feel Good Fridays

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It’s Friday! Another week has come and gone. Summer is officially upon us, and the year is half-over!

Today’s quote is due to the overwhelming love and support we share in a community of Warriors.  Not just the Fighters, but our support: our friends, family, significant others, and even our pets.

“It was quite a beautiful thing, the way we simply just came to be. With no effort or trying, just slowly finding each other’s hands in the dark. No chains or promises, just a simple sign of hope that things will go on and get better.”
― Charlotte ErikssonYou’re Doing Just Fine

I would not be where I am today without you.  And you have my love and respect.

Love, Lisa

 

An Endo Study in the UK is Looking for Participants

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Are you a South Asian Muslim woman living in the UK and have you been diagnosed with Endometriosis?  This one is for you!

Shabnam Jheengoor is a student at the University of Derby and she is working on her a research study for her Master’s in Psychology thesis.  Her work is being supervised by Dr. Sophie Williams.

She will be exploring the experiences of endometriosis of South Asian Muslim women in the UK.  Why?  Research suggests that culture/faith can influence one’s experience of living with endometriosis. Little is known about the challenges, concerns, needs, and experiences of South Asian Muslim women in the UK with endometriosis.   Shabman wishes to shed some light on that subject.  And offer these women a voice.

Qualified participants will be expected to take photographs of their daily life of living with endometriosis. The participants will be given 2 weeks to take photographs and the choice of photographs is theirs, following ethical photography guidelines of course.

Their participation will remain confidential and anonymous and is completely voluntary. Participants may also withdraw from the research before, during and after participation.

For more information on the study, please check out the participant form or you may contact Shabnam directly by email.  The recruitment period will close at the end of August 2018.  So, if you are able and interested, please get in touch with Ms. Jheengoor.

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Searching Around the Blog

Did you know Bloomin’ Uterus has a “search” feature?

If you’re reading this on your PC, look in the upper right corner for the Search box.

If you’re reading this on you mobile phone or tablet, you’ll need to view it in “Desktop Mode” or “Full Site Mode” and the search box will appear.

Sometimes it’s fun to toss in an search term and see what comes up in my prior entries.

Go ahead. Give it a try.

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Mobile viewed as “desktop mode”

Share Your Story: Chica B

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Chica B. was diagnosed in her 30s.  Now in her 50-somethings and living in Rock Island, Illinois, she wanted to share her story, and advice, with us.

Chica B.’s Journey:   Hi, yes I was diagnosed with endometriosis in my 30’s. I tried two different birth control pills due to my painful periods. Didn’t work. Then it seems that working out regulated my periods, less pain and I enjoyed my jogging, Tae Kwon Do classes, and volleyball activities. Then due to a bad divorce and the aftermath, I stopped exercising regularly or at least as I used to do, and my body started to get into the pain mode. Stiff muscles, lower back and leg pain, tailbone pain and rectum cramps. All this crazy symptoms always around my period. To be exact two weeks before.

I’ve been treated by a Chiropractor because I thought that all that exercise I did since my teens til now may have cause some misalignment on my bone frame an were the cause of my pain. I considered to try this to see if I could have any relieve. But no, still not. My actual problem is that my left leg hurt like nobody’s business from lower back, butt crack irradiating pain to my groin thigh and tingling sensation down to my heel. It hurts specially when I sit or walk long distance. Or simply standing. It came to the frustrating thing that if I try to lift my leg, the shooting pain in my groin goes bunkers.

My family Doc. Said to take Tylenol. My Chiro, do therapy, and ice packs. I said, keep exercising as much as you can, keep working. I need too. Rest as much as you able. Nothing seems to be working. I came across this article about endometriosis joint pain and I was right! I’m my 50, and exercising isn’t the problem at all. Not to be bragging, but when I’m feeling Rocky, I can exercise two hours non stop. Yes,I get super sore but my body recovers quickly. And I’m all happy. But boom! Period time and all these evil symptoms come slowly like a cat moving towards its prey. So now, I get frustrated because my fam doc said on my last pap, that she will see me in 5 years.

About my endo, she can’t do nothing due to my age to prescribe meds for the Endometriosis, and the last resource is surgery. So she prescribed me 500ml of Tylenol before my period. But, that doesn’t solve the leg pain issue. I guess I need to go Natural and see if that works. The Chiro, well, I will save the money to go to an Orthopaedic to make sure my spinal discs are healthy and the pain is not coming from that area. But I’m 100% sure my endometriosis its the cause and with a tilted uterus towards the spine.

I’m screwed.

Words of Advice: Get to know your body like a map. Don’t care if they told you, you are nuts. Get informed about any health issue you are going through. Do the research, but don’t get too crazy about it. Too much info will make you think you are dying. Get 3 gyno opinions don’t just get stuck with one. Ask questions, don’t settle for less. Your insurance pay, yes, but is your life. In my case, I pay, I need answers. Keep a journal if it possible. Like the article said, endometiosis can be misdiagnosed by something else and that will hurt you instead of helping you. Be specific. Be honest with your doctor. If he/she doesn’t explain or always is in a hurry. Fly, and find a good one. I’m sure there is a Dr. Who somewhere.

The Last Word: Good luck to all. Me, well, I will start my own therapy and hope for the better. Good luck Chicas😉

I want to send a special Thank You out to Chica B. for being brave enough to share her journey with us today!  And we all wish you the best of luck with your natural course of treatment and honoring your body.  Please feel free to return here and keep us posted on your progress.  Fight on, Sister.     ❤ 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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Happy Friday!

This one’s for all my Warriors!

“Whatever you are physically…male or female, strong or weak, ill or healthy–all those things matter less than what your heart contains. If you have the soul of a warrior, you are a warrior. All those other things, they are the glass that contains the lamp, but you are the light inside.” 
― Cassandra ClareClockwork Angel

I hope you have a wonderful weekend.  And if it’s a rough one, remember – you are strong enough to get through this. Love, Lisa.

Tips for Surgery Day & Recovery

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Have an Endometriosis surgery scheduled?  Here’s a list of things a few of my EndoSisters and I recommend having handy!!  If you’d like to add something, please leave a comment below. 🙂

In Your Purse:

Chapstick

Lozenges (to soothe that post-surgery throat)

Snacks for afterward, especially if you have any food allergies or intolerances.

Have ready in the car for that drive home:

Blankets

Bottle of water

Chewing gum (it has helped some gals with nausea on the drive home)

Ice packs

Overnight bag with clothes, toiletries, etc (just in case you have to stay in the hospital overnight)

Pillows

Sleep Mask (one of those eye covers; you may get ill with all of the movement of passing cars and landscape)

Travel pillow (for stuffing between your stomach and your seatbelt!)

Vomit bag

For Home:

A friend or family member (seriously for like the first 3 days…don’t be alone. You don’t know what your body can and can’t do…and you should be resting)

Comfy clothes. Nothing that binds. Think giant t-shirt, moomoo, or even naked!

Fiber!! (oh man…you need to keep poopin’)

Footstool (to help get in and out of bed)

Gas-X (helps break up the surgery gas that’s floating around inside your body still)

Grabby-stick-thingy (you know, that old people use to get stuff off of the top shelf)

Heating Pad

Ice Packs

Pads (yep…you may be bleeding afterward

Pillow with armrests (keeps you propped up, while lounging, and keeps pressure off your abs.  What am I talking about?  Look here.)

Pre-made, easy meals (soups, crackers, etc.)

Prescriptions (painkillers AND anti-nausea medication)

Stool softener!!!!!

Squatty-Potty or something similar

Tape your cell phone charger to your headboard (you don’t want to bend down to get it!)

Walker (yeah, with tennis balls and everything – seriously helps you get around…not to mention sit/stand)