Ghastly TMI post

So like really, I need one more thing?????

A little background. I have overactive bladder issues. I used to have to go about every ½ hour. I would plan my walks from bathroom to bathroom, in other words, it was bad. I finally went to the doctor who sent me to urology who then started me on my walk down medication lane. I went though like all of them and finally settled on two, max doses for both and still, it just made life ever so slightly better.

They kept suggesting I do botox injections. Yep, you heard that right, botox in the ol’ bladder. Well, never having done surgery I held off but eventually figured life couldn’t possibly get worse so in I went. That was January of 2013 during a blizzard. Wow, it was amazing and I kicked myself for not having it done earlier. I still had to take the medication but so what, right? It lasted 6 maybe 7 months. It’s not a solution or a fix. The only purpose for those injections is to make life better for the life of the botox.

Okay, so back in for more injections in the fall of 2013, then again in the spring of 2014, and late in 2014. In 2015 they were supposed to increase the amount since it was no longer lasting more than a month but they forgot. So I had it done twice in the Spring of 2015 which had catastrophic effects on other surgeries at that time (I’ll post that later). Well, that lasted through the summer so went back in. That is when they told me about the Interstim 2. It’s a pacemaker for the bladder. Sure, why not, right? Again, in another post, I’ll talk about surgeries. But at this point I’ve had so many surgeries I basically had PTSD so figured if I got the Interstim, no more 2 to 3 times a year botox injections, right? I just had to survive these. Well, the scheduling was off so I still had to do injections in January. I needed them last September but the doctor was out having a baby. Really, a baby? Did she not know there are over 7 billion people on the planet already? Obviously symptoms of overactive bladder tend to disintegrate compassion. Anyway…

I get tested and I qualify so in March I had the first of 2 surgeries for this. I had to be awake. It was a nightmare!!!!! They had to inert the wire into the sacral nerve area and I had an external device to test it to see if it helped. That means I had wires coming out of my right butt cheek! So, does that sound a little painful and uncomfortable? Hell yeah! Have you noticed all the explanation points yet?

One week later I got the permanent one put in. I was in so much pain I can’t even tell you. And for someone who lives with chronic pain to say that, you know I’m not exaggerating. Come to find out that one needs a layer of fat to have all this done comfortably. So along with all the nightmare of this I had to keep hearing from the doctors, the nurses, the Medtronics contact (for the device) about how skinny I am (which I’m not) and that I have no fat on my butt (well, that’s true) so this is what happens. Okay, so I’m dealing with all that then wham, I get this weird vaginal pain that nearly cripples me. No explanation – everyone is baffled! Besides the fact that it is a very sensitive area to have massive pain, I’m a trauma survivor so now I’m being triggered all over the place; and one wonders why my anorexia is haunting me again? So everyone is scrambling to try stuff and finally I get booted to my regular doctor who gives me premarin cream to insert. She said (sigh) that some post menopause women with very low body fat have thinning of the vaginal walls. What?!?! So then I have to get help from my therapist because I’m inserting cream in me (Huge Trigger) every other day. I do this than taper off as the doctor directed. The pain comes back but not as strong.

The doctor doesn’t want me to use it anymore, probably because my mom dies of ovarian cancer or something. But it did help some. She boots me back to urology who than tries to boot me back to the doctor and wants me back on the prveamrin. Like OH MY GOD! So the urologist is trying to get some weird crapola called vaginal valium. Well, I’ll have to pay cash and I don’t have it so that isn’t going to happen. The doctor said I could do the premarin until I get that weird stuff but then I have to stop! (Her explanation point, not mine)

Okay, so this brings us up to yesterday to restart the premarin. But guess what? My F*+”@ing bright red and itching!!!! What the hell? Am I now allergic to it? I emailed my doctor just now but won’t hear anything till tomorrow. I’d take a benadryl but it makes me wide awake.

This device has been amazing though. But was it worth it? And now, if I have it taken out, will all these other fun things stay anyway? If they decide to take it out, that will be surgery # 14.

Maybe I ought to do a post explaining all that, with the surgeries, because I was managing recovery more or less but after last year, I didn’t slip back into it, I plummeted with the desperation of someone who has nothing left to hold on to.

For whatever it’s worth, this is what is inside me, and where it is.

 

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