clevermanka: default (going well)
clevermanka ([personal profile] clevermanka) wrote2015-10-27 02:23 pm
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It's not cancer

Not likely to be, anyway, so let's at least know that's off the table. The news is super shitty, though, and it's taken me over 24 hours to get to the point where I feel like I can put any of this into writing. Not only do I lack the language to communicate this (more on that later), but I know that the act of communication, makes the situation more real to me, thus putting me in the predicament of being even more inarticulate with my emotions.

Not only that, but the information from a live blood analysis I got on Friday keeps getting obscured and overwhelmed by the more immediate impact of Monday's discoveries at my consultation with the OBGYN surgeon about my fibroids.

This could be a very disjointed post.

Facts, as presented to me by the microbiologist who did my live blood analysis on Friday: I have Rouleaux, which is a blood condition where my red blood cells link themselves together (in my case, tightly stacked horizontally in long chains--like candy necklaces) and (in my case) form weblike structures. As you might imagine, this causes some basic problems. Like the inability of oxygen to easily travel around in the blood. Other issues showed up in the analysis, but the Rouleax is the big one, and is probably the first domino. Symtoms of Rouleaux are things like constant immune reactions, increased allergic responses, and fatigue. Causes of Rouleaux can be...tumors.

Which brings us to--

Facts, as presented to me by the OBGYN surgeon on Monday: The fibroid Dr. Harris found is much larger than I thought/understood. It's as big as my uterus and has basically taken over the entire back muscle of the organ. It is inoperable and cannot be removed. There is another, smaller fibroid and a polyp in my cervical canal. This might be operable, but the removal would be superfluous in light of the presence of the other, larger fibroid. I think we can all make the connection to that fibryod cyst (a type of tumor) to my painful and heavy periods. But can I make a connection between it and my autoimmune disease (and everything that has gone along with that)? Maybe. I'm using this as my own way to understand, so just come along for the ride with me, here, and tell me if you think I'm off-base.

My current thoughts on how I got here:

Hormonal birth control fucked me up. Studies are showing that HBC takes a serious toll on one's body, especially the adrenals. I believe it. I never had serious health problems or even environmental allergies until I was in my late to mid-20s. I mean, I was kind of frail, but I was active and high energy, if not athletic. I realize allergic developments in one's twenties is a fairly common thing, but you can't deny there's allergies and then there's my allergies. Anyway. I know the pill made me literally and immediately sick because the last several months I took them (nearly two years) were a constant search for a brand/dosage that didn't give me morning sickness. I'd been on them for years (nearly a dozen) before I finally gave up and started taking DepoProvera shots. All it takes is looking at a calendar to point to the fact that my thyroid issues started up right around the same time I started getting Depo shots. I point to HBC (the pills and the shots) as the thing that jump-started my autoimmune problems (allergies) and thyroid/endocrine issues (glandular stresses). I believe hormonal birth control is largely responsible, if not the number one direct cause, of my health issues today. Guess what the OBGYN surgeon told me was the only other option for dealing with fibroids like this, apart from a hysterectomy? Hormonal birth control.

I am faced with the choice of removing an organ that I very much do not want to remove, or put into my body (for basically the rest of my life, or until I remove the organ) what probably caused 90% of my daily health problems today.

I am taking both these items of information (yeah, both—see, you forgot about the Rouleaux business too, there, didn’t ya?) to Drs. Khosh and Jonah, but I need to make my decision within three weeks or I’m screwed insurance-wise. Anyway, I can’t imagine any herbal treatment that actually shrink and remove cysts. If I’m wrong on that, pipe up in the comments, but I want solid research and reviewed reports, not hippie websites.

Whew. I feel better. Not good. I don’t feel like I just got punched in the stomach, at least. It makes it more real, but it also makes it a little easier.

Yesterday, when I was dealing with the emotional fallout from the surgeon’s report (as well as the physical discomfort from having a fucking uterine biopsy), I had no idea how I was going to write about this. I even groaned to [livejournal.com profile] mckitterick, I have to write about this. He told me I’d feel better afterward, and I have to admit I scoffed. A little. But now that I’ve written it out, now that I have my language for it, it is easier to process. He was right. I can’t emotionally process something without appropriate language. I guess it comes as no surprise that communicating basic facts about my situation is the best way for me to emotionally process it (Vulcan 4lyfe).

So here we are at a new stage of Finnegan Begin Again. This time, it's a physical crisis coupled with emotional growth! My favorite.

[identity profile] poincaraux.livejournal.com 2015-10-28 03:00 am (UTC)(link)
I got nothing except ... fuck ... that sucks.

[identity profile] apocalypticbob.livejournal.com 2015-10-28 11:29 am (UTC)(link)
Well,
Fuck.

I don't have anything useful to add. Just empathy on the shitty news, and the knowledge that I'm thinking about you.

[identity profile] renniemom.livejournal.com 2015-10-28 01:31 pm (UTC)(link)
^^This.

You are a warrior surrounded by an army to help you maintain balance. Keep processing and exhausting your resources and know that we are all here, thinking about you and loving on you (and pouring wine as appropriate and necessary).

Damn. What a load of suck. I'm sorry it dumped on your life.

[identity profile] kalimeg.livejournal.com 2015-10-28 02:15 pm (UTC)(link)
Oh all the allergy news combined with possible reasons. Makes the head want to pound a desk, it does.

Tomorrow (probably actually today) for TMI, I haz it. I wondered early in your narrative if that was one of the options.

[identity profile] 1-rhiannon-1.livejournal.com 2015-10-28 05:10 pm (UTC)(link)
I saw your post asking for hysterectomy stories, and now I see why. Holy shit, doll, this is a lot to digest and have to think about. I have not been through what you are going through, but I wanted to let you know that I'll be thinking of you and wish you the best of luck in making a decision!

[identity profile] clevermanka.livejournal.com 2015-10-28 05:28 pm (UTC)(link)
Oh, yes, please have her email me.

I am Incredibly Concerned about the lack of uterine contractions during orgasm. It's no surprise to you that my orgasms are Really Super Important to me, and I'm not happy with the idea that I might have diminished orgasms for the rest of my life.

[identity profile] clevermanka.livejournal.com 2015-10-28 05:28 pm (UTC)(link)
Image
Edited 2015-10-28 17:29 (UTC)

[identity profile] clevermanka.livejournal.com 2015-10-28 05:30 pm (UTC)(link)
I would get to keep my ovaries, yes. And the call for hysterectomy stories is up, so feel free to chime in anytime!

[identity profile] clevermanka.livejournal.com 2015-10-28 05:33 pm (UTC)(link)
I would get to keep my ovaries, THANKFULLY.

Please tell your friends if they're interested in chiming in about their stories, I welcome the input. I posted the request for stories today and anonymous commenting is turned on for the next week or so, so they don't need to have LJ accounts.

[identity profile] clevermanka.livejournal.com 2015-10-28 05:33 pm (UTC)(link)
That's a nice arsenal, there. Yep.

[identity profile] clevermanka.livejournal.com 2015-10-28 05:34 pm (UTC)(link)
I am hugely concerned about how this will affect my orgasms because I have Fucking Amazing Orgasms and honestly they're one of my great joys in life...

[identity profile] clevermanka.livejournal.com 2015-10-28 05:35 pm (UTC)(link)
I would like to go to every doctor who failed to mention IUDs as an option to me and punch them all in their stupid faces.

[identity profile] clevermanka.livejournal.com 2015-10-28 05:36 pm (UTC)(link)
Thank you! I put up the post today, so chime in anytime.

[identity profile] clevermanka.livejournal.com 2015-10-28 05:36 pm (UTC)(link)
I was totally that dog all day Monday.

[identity profile] clevermanka.livejournal.com 2015-10-28 05:38 pm (UTC)(link)
When my uterus decided to grow something in there, damn it, it decided Go Big or Go Home. #neverdoanythinghalfway

[identity profile] clevermanka.livejournal.com 2015-10-28 05:39 pm (UTC)(link)
Yes, please comment with your story! Thank you. I put up the post this morning, so it's ready for input!

[identity profile] write-out.livejournal.com 2015-10-28 11:30 pm (UTC)(link)
Great news about your ovaries!

I'm missing an ovary and a fallopian tube (what's left behind is deformed thanks to stage IV endometriosis), but I still have my uterus, so no hysterectomy story from me yet. It was discussed after my last surgery almost four years ago, but as nothing in there has exploded since then, I think I have some more time.

That said, I am reading all the stories over there with great interest. I'm glad you're getting the nitty gritty from others.


Edited 2015-10-28 23:31 (UTC)

[identity profile] seascribe.livejournal.com 2015-10-28 11:48 pm (UTC)(link)
Shit, bb, that is a lot to deal with. I'm glad you got it written up, and I hope that the physical crisis resolves as easily as it can. *a whole bunch of hugs*

[identity profile] mundungus42.livejournal.com 2015-10-28 11:58 pm (UTC)(link)
*enormous hugs* Well, I'm really glad it's not cancer. But there is no happy answer when faced with the choice of major surgery or going on meds that you already know make you sick. I read today's post, and though I have no personal experience to add, I found what others wrote to be encouraging, and I hope it makes the choice one between not fun and shitty as opposed to choosing between shitty and shitty. You're very much in my thoughts. Here's wishing you good news after all this insanity.

[identity profile] redheadfae.livejournal.com 2015-10-29 12:31 am (UTC)(link)
I can totally understand that. I'm sorry that I didn't think about uterine contractions :facepalm:
However.. I *will* put you in touch AND I found this for you.. it looks promising, one woman's experience post-hyster:

http://honest2betsy.blogspot.com/2011/03/uterine-orgasms-myth-and-mayhem-online.html

I also found this book on GoogleBooks, that appears to have been written by a Kansas woman, as she mentions the Kansas Dept of Insurance in later pages. Sex, Lies and the Truth about Uterine Fibroids: A Journey from Diagnosis to Treatment to Renewed Good Health (https://books.google.com/books?id=J5YLQimy1nsC&pg=PA137&lpg=PA137&dq=uterine+contraction+or+clitoris?&source=bl&ots=hEffbQsWeu&sig=qWPitQWqqAlQvZx2PdDuuBxZOf4&hl=en&sa=X&ved=0CDcQ6AEwBGoVChMIqeuD5LLmyAIVyzwmCh0-hwzc#v=onepage&q=uterine%20contraction%20or%20clitoris%3F&f=false)

I'll even ask around my Very Good Source of All Things Sexual For Women and open forum... my Passion Parties group. They share the most amazing things in the course of our meetings and pages.


[identity profile] clevermanka.livejournal.com 2015-10-29 01:19 pm (UTC)(link)
As always, your resources are A+.

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