Pages

Tuesday, November 28, 2017

The Specialist

This post is raw and yes I use a few choice "raw" words, just a heads up.

 I️ can’t decide how to feel 

On one hand I️ have so many questions answered now On the other it’s opened the door to a whole new world of worry. 
Exactly how long waiting is going for be worth it? 
How the hell can it cost more than my husbands 4 years of grad school living allowance for one surgery? 
I️ never want to be pregnant again. 
I’ll be able to walk and not pee. And run and have fun
I’ll be able to orgasm again. 
I’ll be able to empty my bladder. 
I️ will be out of commission for weeks. 
I️ will be better off for longer. 

I️ have a torn pelvic floor. I️ have 3 misplaced organs. I️ have been led to believe the things I️ am experiencing are just what happens to women’s bodies. 

And in the words of my doctor “that’s bullshit. This IS a big deal!”
 I️ am 29 years old. 
I️ can not stand up without my bladder leaking. Let alone, pick up my toddler, lift heavy groceries, exercise, cough. 
All the kegels in the world will NOT help my condition. They will not hurt to strengthen my muscles. But the parts that are torn? Will not get stronger or function properly withOUT surgery. 
To prevent recurrence I️ can not keep my uterus. This is something I’ve known from the beginning, but I️ kept hoping I️ was just being overly anxious. I can’t help but wonder if it’s taken so long to get straight answers because I️ needed to come to terms with that. 
I️ also wonder if I’d gotten the help I’ve sought sooner maybe it wouldn’t be so bad? 
Questions I won’t be getting answers to. 
That’s ok. 
What I️ know now is how far gone some parts of me are. I️ can not empty my bladder on my own. I️ can not keep my uterus inside of my body. I️ can not strengthen my muscles on my own. 
The recovery for this surgery will be intense. I️ will be unable to lift more than 5lbs for 6 weeks. Then 10 for 5 more weeks. From there I️ may slowly increase my actions. 
This has not been what I️ found prior to this point. The info I’ve found previously is for mild to moderate cases. Not Stage 3 cystocele, Stage 3 rectocele and Stage 2 uterine prolapse.  I’ve seen with my own eyes what has happened to my body. However I have found a specialist who can help me. 
I️ just can’t afford him. By about $100k   

I️ do not think I️ was led down this path in vain. I️ mean the odds of going from one specialist to a secondary specialist and getting in to see them on short notice... is amazing.
My visits with these two doctors were very long, about 2 hour + appointments. They were both as thorough as they could be. The first appointment in Great Falls I was feeling hopeful, after all I'd waited a few months to get in and my doctor even called them to help me get my appointment while I was in his office. I'd researched the clinic online to see that they offered hystero plexy surgery (procedure that strengthens the \attachments holding up the uterus). I had called the Office billing department and got a general cost idea of what the procedure would cost me as a cash patient. And it was affordable. However I had merely self diagnosed that this was the particular procedure that I needed.
What could I do? I had read about it in multiple books, and online articles and a few studies of "younger women" who've experienced similar issues (granted these "younger women" were still older than me by 20 years). The procedure was stated to have great success. It however did not mention anything about the other issues I was facing. Which I neglected to take into account, but I'm not the doctor and that's why I still sought specialty care.
Anyhow at this appointment i got my exam, and she brought in "the pessary cart" there are many different styles and sizes, and she wanted me to try a few before giving up on the idea. Every single one i tried fell out. Yes I did cry with frustration and feelings of doubt and discouragement; Which left her very confused. She further examined and stated "Well this is unusual indeed"
Great just what everyone wants to hear about their lady bits...

"It seems you have unusually stretchy tissue. I can not see anyway to help without surgery"
Well I'm glad we came to the same conclusion I entered this office with...

She went on to explain that I would need more than just the hysteroplexy and that a Urogynocological specialist visit was in order. She gave me the info for one in Billings in case I was going through there during my trip (which I'd planned to but over a weekend on my way home) 
Distraught I left. I messaged my mom on the chance that she knew somebody.
She did.
By the time I had his contact info the office was closed, so we went on with our vacation in Utah and seeing so many long lost good friends as we could in approximately 36 hours of daytime. Monday morning I called the Specialist my mom had recommended.

Turns out another friend of mine knew this particular doctor also as she had worked as a prep/recovery nurse for him! All had great reviews of his skills and knowledge.
Being such a great recommendation I felt that surely I wont get in to see him while I am in town during a holiday with only 3 business days to fit in. They had an appointment the very next day that was open.
Joy.

I took it. It wasn't cheap but I took it.
This time I brought my husband with me, I needed the support. It was long, had lots and lots of waiting for him. However it was an eye opening experience for both of us. He took measurements of just how far my organs have slipped, I wont get too in depth but of the 4 main organs in the pelvis, bladder, vagina, uterus, rectum none of them are basically where they should be. Not because I pushed to hard birthing babies necessarily, not because I got back to activity too soon and not because my kegel strength isnt 5/5. These organs have fallen because my muscles have torn and parts of them simply do not function as they've been disconnected. Which means surgery.

There's more than one option when it comes to surgery, but to get the best results to keep from having to go through this all over again in just 5 years, the more invasive one is recommended. Which has longer recovery time, more intense recovery and takes longer to preform. Which skyrockets the cost. 
So I can't really do that at this point.I get to keep waiting.
I should be better at waiting by now since It's what I do all the time :) Waiting for checks to be mailed, waiting for weather to let up, waiting for tantrums to end, waiting for daddy to get home ;)
all sorts of waiting games.This wait just feels heavy.
I am to avoid intense exercise, which I enjoy so that will be difficult, I can stick to walking, biking or yoga. So I have some options at least. No more weight training, Cardio Kickboxing, Running, Elliptical etc etc for a while. Which made me cry. Exercise has helped me overcome my post partum depression. Having to let go of so many types of it feels like opening the window to let that cloud back into my life. I will try to keep it away. Work on my nutrition and overall functions that I can.
i am also meeting with my physician here in Canada; to see if this new and official diagnosis can help expedite the wait for a specialist visit here. Lets face it I'd be able to afford more of the care while here with the socialized medicine system. It's a great system, just known for its wait times.

I don't have cancer. I am not dying. Just peeing an awful lot, and bleeding when I shouldn't and having to work really hard to pay attention to what Im eating to maintain better gut health (something that should be done always anyhow). I got home from this trip with so much on my mind, intense pain from being on my period, and then I started throwing up. Both ends.
Today I am feeling way better, whether it was a virus or I just made myself sick agonizing over all the what if's in my life right now. 

I have some amazing friends and family who have offered their support and help, and I am so grateful. I just don't always know what I need help with. I do need help learning to say No. Lets face it I've always had that issue! For now i will be working on training my toddler to not need me to pick him up all of the time, getting down to his level to offer comfort, making him walk up the stairs on his own, basically redoing out bedtime routine and trying to transition him to either his own room or sharing with one of his sisters.
Trying to focus on the things that I CAN DO. The things that are in my control, because lets face it that is mostly just our own actions and reactions. My husband has been working tirelessly to find solutions, he's applied for second jobs and put feelers out for opportunities he can do from home or during down time at the office to help us save up for these expenses. It is also expensive that I wont be able to massage. Maybe some light work here and there but full body hours are out. I might find myself a part time job around town to help our family, and maybe having jaxon have some time away from me regularly will help him see he is doing great and doesn't need me to hold his hand every moment now. Or maybe it wont.
I do know I will be approaching this holiday season with more and more prayer and focus. A time for centering my life and that of my families on the Grace of God and the tender mercies that so often get overlooked everyday.

This is all I can do right now. I'll probably be working on some quilts too though, cuz those are good for my mind, and I can't be as exercising  as I'd like so I gotta get creating!
(making up words is fun isnt it?)


If you made it all the way to the end wow, thanks friend for walking down this path with me. I'm glad you're here, not sorry things got so personal; lets face it we're friends forever now. 

3 comments:

  1. Oh Stephanie. My heart aches with yours. I don't have any words of wisdom... and I do not live close enough to hold you and let you cry as I cry along side you. I do know that you are an amazing daughter of God. Remember that always. Remember to cry out to Him and to be just as personal (and maybe more so) with Him in your prayers. I believe in miracles. And I will pray that you will be able to see the miracles in your life each and every day of this long and difficult journey. Much love to you, dear sister. <3

    ReplyDelete
  2. I love you guys. Thank you for sharing so candidly. Much love to you as you move forward.

    ReplyDelete
  3. Oh Steph. I am so sorry you are having to endure this difficult journey. I hope you'll find peace and success as you make the necessary changes for you and your family, and that you won't hesitate to call on your friends and ward family when you need help. Love you guys!

    ReplyDelete