Angry, Anxious, and Relieved

[Nevermore 38]

Hello, all!

My name is Raven. I'm 35 and I'm pre-op. My surgery date is January 6, 2014 and I have very mixed feelings about it.

I have Polycystic Ovarian Syndrome (PCOS) and I have a particularly bad case of it. I have all the symptoms in varying degrees of severity. I also haven't seen a natural menstrual cycle since I was 22 and only recently, within the last year, were they able to force a cycle with near dangerously high doses of progesterone and even that has stopped working. Because of my amenorrhea (total absence of a cycle), I've been through multiple surgeries to remove hypoplasia (pre-cancerous buildups) and calcifications from my uterus. I am, of course, infertile because of this and from being overweight.

Along my journey of doctors and surgeons, almost every one has brought up weight loss surgery. "NO WAY!" I would proclaim loudly. I've done my research and I also watched a few of the videos of the surgeries. I've seen the poking and the bleeding and the meatball surgery... and these guys know they are being watched and video taped for the world to see! What are the ones who aren't being watched doing? Yeah, you can forget that...

After a few years of struggling, dieting, surgeries, losing the constant battle against my weight, my symptoms gaining strength and frequency, the sudden realization that I'm in my mid-30s and haven't had a child... the "NO WAY!" turned into... "Okay, but only as an absolute last resort."

A couple of years ago, my endocrinologist told me we were at the "last resort". I told him I wanted to give one more try myself. I redoubled my efforts at dieting. I took myself down to 1000 calories a day. I was exercising for 4-6 hours a day. I started making progress! Over the course of almost 2 years, I went from 300 lbs. to 215 lbs. Huge, right? Don't worry, I nearly broke my arm patting myself on the back. But I just could not keep up that momentum and my body started breaking down. And the moment I let up even a little bit on either the calories (even just 100) or the exercise (even just 30 minutes), I would either plateau or start gaining again.

Then I made a huge move across the country which required all of my mental and physical resources over the course of a few months. I was still counting calories, averaging 1500-1600. And by the time I was moved and settled, I was up to 235. I tried to regain some control, but this was about the time they started putting me on high dose progesterone. This gave me extreme irritability, unprovoked and constant crying, and insatiable hunger. So now, I'm back to 245 lbs. and just hopelessly watching the scale inch up a pound or three every month.

I brought all of this to my recent endocrinologist appointment and she said, "Raven, we're at the end of our rope." It rang in my head for about 10 minutes. She said our last options are a partial hysterectomy or weight loss surgery. But either way, I can't go on the way I am. Not only is my quality of life suffering tremendously, but the health risks, especially the constant threat of endometrial (uterus) cancer, are on the verge of consuming my life.

So, I finally gave in. I went to my first appointment with the VSG surgeon in September. I've scheduled out to January because my insurance doesn't cover ANY of the cost of the surgery. Not a whit. Luckily (and unluckily), my endoscopy found a severe hiatal hernia that needs immediate attention so that forced my insurance to chip in half, but I still have to come up with $6k. I tried the medical credit sites, but have been turned down.

I'm angry that no matter what I did, I was forced to this. It's infuriating that if any person without PCOS would have done what I've done, they'd have lost 300+ lbs in the time it took me to lose 80. It's maddening that I could maintain at 1500-1600 calories a day if it weren't for the progesterone that's sort of keeping me for getting cancer. I'm filled with trepidation over someone cutting out a significant portion of a very beloved body part. I know that the risks of death or serious injury are minimal and that the practice has been highly refined over the years, but my trepidation prevails.

But I'm also relieved that I've finally committed to it.

And I'm admittedly a little excited at the prospect of the help this could provide... not just for my weight, but for my PCOS that has been plaguing me since I was 14 years old.

Thanks for listening to me ramble.

[DangerousD 77]

You seem to have gone through a long journey to even start this journey. You will be in my prayers to be comforted and to come up with the money. I wish you all the best.

[SeaLegs 38]

Welcome to the site. I think you'll find it helpful as you continue this difficult journey.

It seems to me that your insurance company should cover this under the circumstances. Getting coverage requires a lot of expertise from the doctor's office. Are they really good at it? Have they gone as far as they can go in getting you coverage? Does the hospital have any funds to help out people with hardships? I'm not asking to upset you, I'm outraged that you have to put up so much money for something so necessary.

[Nevermore 38]

DangerousD,

As they say here in the south, "You ain't just whistlin' Dixie!" It has been a very long, hard journey and it seems there's much more ahead. Thank you much for the prayers! I certainly can use all I can get. <3

[Nevermore 38]

SeaLegs,

Don't worry about upsetting me. I'm fairly easy going. I know that the doctor's office has contacted my insurance but hasn't made a huge effort. He's one of the top recommended for safety and success and his office is rocking busy. Unfortunately, that does mean that they don't have to work hard to keep business. I did contact the insurance company myself and appealed. Their policy is that they won't cover any WLS under the diagnosis of "morbid obesity" but my diagnosis isn't that. However, they don't have or accept any other codes for WLS. It's total BS. And even though my hubby and I are up to our eyeballs in debt (we were hit REALLY hard by the economy crashing), he makes too much money to qualify for any hardship programs. It's the whole rock-and-a-hard-place predicament.

The good news is that his company just hired a health care advocate that starts next month. So, hopefully I'll have time to talk to them and see if they'll go to bat for me against the insurance company. I'll say a few prayers and put it in God's hands. I know it will work out somehow. I'm just very tired now. Know what I mean?

[SeaLegs 38]

Nevermore, one of the other members mentioned a cruise by the WLFSA, and when I checked the site, this organization provides grants. Here's the link: http://www.wlsfa.org/about/ I am happy to hear you will have a health care advocate!

I'm glad you're not offended. I'm a nurse who went in it for the hands-on bedside patient care and helping people to heal, and I hate the way health care is corporate and insurance-company driven. The point of good bedside care has now become to earn Press-Ganey points so the insurance companies pay the hospital, not because we care about patients.

I know you're exhausted. I'm so sorry about that; I have an inkling from my own experiences. If I could offer one more suggestion for your tool belt: Ask your endocrinologist to contact your surgeon directly and personally. While there is a possibility that your endo might not want to get involved, there is also a possibility that they know each other, have heard of each other, have kids in the same private school etc, and while little old you may not have a big impact on a bari practice, referrals from an endocrinology practice after your surgery has been successful would be a feather in that surgeon's cap!

I'll be following your story and wishing you the best!

[deedadumble 1,033]

I also have PCOS (and Hashimotos). I finally had a full hysterectomy at 42 because I was in enormous pain from the cysts. My surgery was in January and I'm down to 186 (from 265). I have stalled out and have been doing a lot of research into solving my PCOS and Hashimotos problems.

Have you been tested for Hashimotos? It often occurs with PCOS and with your history it seems likely.

New research is indicating a strong link between gluten and Hashimotos. I've also been reading a lot that indicates that it may play a role in PCOS. I know that everyone seems to be jumping on the gluten bandwagon, but the only time I ever had a regular cycle before I had my hysterectomy was when I cut gluten from my diet. I also ended up pregnant... surprise surprise! It seems like you are not 100% in to getting WLS and I would recommend you try eating clean and cutting out gluten for a few weeks to see if it will help.

[Nevermore 38]

SeaLegs,

Thanks for the info. I looked at the grant requirements and I do not think my bariatric surgeon meets them (for donating) but furthermore, I know I don't meet the hardship requirements despite not having the money. It says the doctor is allowed to ask for the grant for one person every three years. There are people out there who have it a lot worse than I do financially. I can come up with the money eventually... it's just taking a lot of time. I'd feel bad for taking the grant from someone who wouldn't be able to get the money even over time. It was a really good suggestion, though! Thanks!

As far as my endo and my surgeon knowing each other. They do and they've been in contact with each other several times. This was the surgeon that came highest recommended by my endo (though I definitely looked into several others before choosing this one).

And I completely agree with you about the quality of care going down the drain because of the corporate and now government involvement. It's gotten so bad lately and it is only going to get worse. My husband and I have been seriously considering moving to Colombia. It's bad when people would rather risk the Cartel than their own government. hah..

Thanks for all the help! I will definitely keep updating as my story unfolds.

[Nevermore 38]

deedadumble,

I have no idea whether or not I've been checked for Hashimoto's. I've only actually heard the name a few times over my lifetime and didn't know until I just went to research it that it was a thyroid disorder. I do know that I get my blood work checked every six months and in that they always check my thyroid for a problem. So, I assume that it would turn up whether or not I had Hashimoto's. They also check me every time for Cushing's Disease. I have all the symptoms, but my levels always come back as a no.

As for the gluten, that's an excellent suggestion and one I've already thoroughly explored. My husband has a gluten allergy and late last year, I changed us over to gluten free. I figure if he's going to do it, I might as well.. it can't hurt, right? Well, he started feeling better and better and I started feeling worse and worse. At first, we thought it was just gluten withdrawal.. but after six months, it never let up and I was sooooooo sick. Then I started eating some gluten and started getting better. Turns out, I have a non-gluten intolerance. heh... I've been trying to strike a balance of just lowering my gluten intake without making myself sick. It doesn't seem to have done anything positive that I can tell, but it might be a long-term internal improvement that I won't notice. I just have no idea. That has me hopping from foot to foot as much as the progesterone has. It's all a bit maddening.

Believe me, I've tried everything and this is my last resort other than a hysterectomy and I'm still hoping for a kid. The hysterectomy would only prevent my severely high risk of endometrial cancer; it wouldn't help with any of my other symptoms at all or my weight. In fact, it would make my weight struggle much worse since I'd be thrown instantly into menopause.

Oh, what fun!

Thanks for the suggestions. I'm open to any anyone has! As tired as I am, I'm still willing to check out anything that would give me relief from my symptoms.

[deedadumble 1,033]

Most doctors only check thyroid levels with a TSH test. This test does not detect Hashimotos. A more accurate method is testing for antibodies. Here's a link to research regarding the connection between PCOS and Hashis: http://www.drhagmeyer.com/hashimotos-thyroid-disease/women-pcos-often-have-hidden-hashimotos-autoimmune-thyroiditis/

There are new studies that show that even if you do not have Cushings, you may have adrenal fatigue. Adrenal fatigue is very common with autoimmune disorders and especially with Hashis.

I am just beginning my research and trying different things. I was hoping that I would lose weight and everything would get magically better. I also thought that if it didn't the doctors would stop blaming my weight for why I felt like crap.

The first thing I have been doing is trying to get my Vit D levels to an optimal level (around 80). I've been on 50,000IU a week and that raised it to 50. It's in the normal range, but for Hashis they recommend 80 or above.

The second thing I am doing is adding in T3 in addition to the Synthroid I am taking. I'm trying to get my Free T3 into the upper third range of normal. Hopefully it will be there next time I get bloodwork.

The third thing I'm doing is getting my Ferritin levels to an optimal level for Hashis (90-110).

Once I get these 3 things straightened out I am going on an AIP (autoimmune protocol) diet. It's gluten and soy free plus an elimination diet for eggs, dairy, nuts, nightshades, and seeds).

I'm doing all of this with the assistance of my acupuncturist. His wife was debilitated by Hashis and through his research and the assistance of the book "Stop the Thyroid Madness" he helped her feel better. He told me that my answer doesn't lie with Eastern medicine (acupuncture), it is in Western medicine and functional medicine. I haven't been able to find a functional medicine practitioner in my area, but if I'm not better in six months I'm going to go see one that's a few hours from where I live.

[Nevermore 38]

deedadumble,

That sounds like a complete pain in the butt. I don't know if I've been tested, but I'll definitely be asking my endo at my next visit if I have been. If I haven't been, I'll insist on it. I really hope I don't, My problems are sky high as it is. I'll be praying for you. I really know how it feels to do every possible thing you can and get little or no results. It's so frustrating!

[VPAPNYC 30]

Hi Nevermore,

I'm also having my surgery on January 6th at Lenox Hill in New York City. Let's keep in touch.

Best of luck to you!!

[Amanda Nicole Hosaflook 65]

I have PCOS also. Same reason I am having surgery. Mine is Jan 8th. Hopefully this will help us pop out a baby! Even though we have to wait 2 years:/ I had to stop my birth control a month before surgery. We'll see if I have a period.., I usually don't have one off birth control.

[Nevermore 38]

So... 1 day 9 hours and 44 minutes until surgery... but who's counting?

I'm a little excited and a lot nervous.
But I have everything paid and done except packing my bag for the hospital and showing up.

Any last minute advice before the plunge?

[Nevermore 38]

Alllllllrighty then...