A Headache in the Pelvis

I am learning slowly all about intercystial cystitus. I had my pitty party last week. I was in horrible pain. At times as high as a 9 on the 1-10 scale. I have gotten myself down to a 2-3. How you may ask? And in such a short time? Well, I can say it was quite the adventure. First thing I did was call my doctor crying. She immediatly prescribed me elmiron a blood thinner and Urelle an oral antiseptic. I did a bunch of reading and found out that no one had told me to change my diet. So I cut out all caffiene, chocolate, citrus, multi vitamin, spices, vitamin c, etc. Un-benounced to me it is not a good idea to cut out caffience cold turkey when you drink 5-10 servings a day and are being prescribed two new high powered medications. The result was acute caffiene withdrawel on top of my already present IC pain. I couldn't get out of bed, I was dizzy, blurried vision, crying fits, headache, you name it. I thought I was dying. I was thisclose to having sean drive me to the hospital. But by Monday of this week the pain and the weird symptoms went away. I also got off the high powered meds after researching them on my own and consulting with my doctor, after finding out they only work in 50% of patients and have side effects like bleeding, bruising and hair loss. As hard as I worked with my PCOS and my hormones to get my hair to grow back the last thing I want to do is take a drug that makes it fall out. This week from hell really made me re-evaluate my life. 65% of people with IC do not work, and I don't want to be in that 65%. I am truly humbled. I have a new found appreciation for my job, my life, heck even my health insurance. I ordered two books on IC I plan on reading in the up coming weeks. Also I must note that many doctors believe that PCOS, IC and Endometriosis are all inter related. My goal is to find the most holistic, non invasive, treatment that I can find to manage these three conditions. ( Although I don't have a 100% diagnosis on the endo, my dr. is convinced I have it) So I need to learn about that too. As a patient you have to take ownership of your own medical treatment. Sometimes doctors will forget to tell you some or assume someone already told you, like in my case no one told me to change my diet and when I did after a week my pain went from a 9 to a 2-3. I can live with a 2-3 and give up coffee, even chocolate. Sometimes in life you have to sacrifice, and humble youself. You can sit around feeling sorry for yourself, but it doesn't change your reality, and in most cases only makes it worse.

Courage is not the lack of fear, but action in the face of fear. .........The goal is not to be pain free, but to manage the pain well enough to live a happy and fullfilling life.

Possible Sccondary Conditions

Secondary conditions names: Endometriosis of the bladder and Interstitial cystitis (IC)

Won't have all the answers until I have an endoscopy of my bladder. Appointment to see urology specialist not until Dec. 6th. That's a long time to sit and wait for answers. I've spoken to my doctor about treatments and I know what the possibilites are. They aren't worth talking about unless the urologist and the gynocologist agree together this is what I have 100%. Until then I keep living. Here are some links to more information on the two disorders and how they are linked.

http://en.wikipedia.org/wiki/Interstitial_cystitis




http://www.mayoclinic.com/health/interstitial-cystitis/DS00497



this article is about endo and ic



http://www.medscape.com/viewarticle/456482



http://www.fightingfatigue.org/?p=195



http://endometriosis.org/resources/articles/interstitial-cystitis/



http://www.interstitialcystitisva.com/documents/EndoIC1.pdf

Post 107... New Dr. New Hope?

My eyes opened this morning for the second time at 5:30 am. Unlike yesterday I was able to go back to bed until 8 am. So happy. Then I weighed myself. 218!!! That means I've lost 19 lbs. in 67 days. Very proud of myself. I ordered some clothes online from old navy. I had been up to a size 18 ( tight) and ordered some size 16 jeans and some XL shirts and to my wonderful suprise they all fit loosely. This is also very positive. My next goal is 200. Which should take me another 10-15 weeks. Should be back down to s size 14 then.  I am much more recognizable when I am 200 lbs or under. When I get over 200 lbs I've had people walk right on by me and not even say hi because they don't recognize me. I don't wish that feeling on anyone ever. But, I accept that this is what happened to me. I got sick. I had an underlying untreated medical condition for years and I went back and forth up and down on the scale while my hair was falling out and other weird symptoms and I got passed from dr. to dr. and finally about 3 1/2 years ago it got so bad that in a span of 2 years I gained 80 lbs. Finally I got taken seriously by a dr. It is sad I had to gain 80 lbs in 2 years for a dr. to say "yeah there is something wrong". But, I can't change the past only the future. So today I see a new dr. I hope she can answer some of the more puzzeling questions. Like, my recent extreme pain. Do I have what are called "chocolate cysts"?Do I have endometriosis? Do I have a secondary medical condition that would explain why my estrogen levels are at a 9 and not the normall 300-500? I have so many un-answered questions. This dr. may not be the one to answer them, but she is a starting point. They say you have to be your own health advocate, and that is so true. I want to be healthy and I am going to give it my all to get there.

Post 106...The Good in The Midst of the Ugly

If you've been reading my blog, then you are aware of the challenges that I have been facing recently. I'd like to take today's blog entry to talk about the good things happening in the midst of the ugly.

  First off as of today I have lost 17.5 lbs in 63 days. Here are the adjectives I would use to describe this: miraculous, awesome, fantastic, amazing, magical, profound, life changing, exciting, empowering, etc. For a woman with PCOS to lost 2 lbs a week steady for over 8 weeks is awesome, just plain awesome. Crazy enough - although the PCOS causing the extreme weight gain, the first line treatment (besides hormone therapy) is good old fashioned weight loss. They recommend a woman try and lost 5-10% of her weight and ideally 20%. I have so far lost 8.2 % !

My goals are as follows:
 200 lbs = 37 lbs = 15.6 % 
180 = 57 = 24%
150 = 87 = 36.7 %

These are of course just goals. I do not strive for perfection just progress. I am only 5 lbs away from the low I got to last year of 214 before I gave in and gave up in October 2010. I have a destinct goal. I want to start trying to have a baby January of 2012. That gives me about 16 months, which I feel is plenty of time. If I can get back down to my normal weight of 150 I will be back into a healthy weight class and have a much less risky pregnancy than is I were still over weight. Although if I don't reach my goal I am still going to try. I will be 29 and a half. I feel this is a very good age to have a child. I've had time to enjoy life without the responsibillity. I've gotten all of my partying days out of my system. (I still haven't had a drink in now 63 days) And I will hopefully be at a place financially that I can support the child - or hopefully children. Two would be nice. Nice is an understandment. One would be a miraculous gift from God and two would just be more than I could ever hope for grateful. I always wanted to wait until I was 30 to have a baby, and timing worked out exactly that way. That is if I am able to get pregnant. If not then adoption here I come. My dad said he would buy me a baby. I told him I wanted a Black one, a White one, and Asian one and a Mexican one....he laughed and called me Angelina Jolie. I said well then that makes Sean Brad Pitt and we all had a good laugh.

The biggest thing is although there is a lot of ugly health issues going on right now with both Sean and I, I still have hope. I have to focus on the good things that are happening. Like the weight loss. Or the fact that I keep getting compliments on my hair looking thicker. Or compliments on how nice my skin looks. I believe I am getting better. I believe that I am going to manage this PCOS. And if I have a baby then I can say "I beat it". Although I will forever live with PCOS (until menopause I guess), I will win if I achieve my goals. My words to my disease: You do not own me. I own me. You may have hitched a ride, but I will not let you dictate the outcome of my life. I am stronger than you.
                                    

post 105 ....The Pain Went Away

Well as of yesterday the pain went away. I am sure it will come back, it always does. Almost monthly and at randoms times during the month. They describe it like labor pains or like you are roller skating and you fall flat on your ass. My mother equates is to the pain she had with her gallbladder. I don't know how you want to describe it other than it starts with a cripple over stab in the stomach fall to the ground and then you hurt for up to a week. And then it goes away. Sounds to me like a ruptured cyst. And I think my Dr. is right probably a big one. But, we didn't catch it on the last ultrasound. The way my Dr. described it, when you have large cysts they rupture but the sac remains and will fill up with fluid again and rupture again. And then repeat. I was happy I was able to work yesterday. I am thankful I get to see the specialist on Sept 12th. I'd like the pain to go away forever. Is that too much to ask? My mom and I were joking trying to make light of the situation and we decided that the pain was good cause it meant my ovaries are still there. I love my mom. Talking to her during this time has meant the world to me. Pain is our body telling us something is wrong. Just like pain is our minds way of telling us something is wrong. I've got enough pain in my body and my mind to last me a lifetime, but every day I am working at chipping away at that pain. I don't expect to ever be pain free. It's not about perfection, its simply about progress. One day at a time.

Post 104.... Signs of Inspiration

I had one hell of a week. I left by doctors office Monday thinking I was having surgury to remove either cycsts or my ovaries all together, to today being humbled and grateful the ultrasound revealed nothing except my normal multitude of small cysts. No surgury for now. I follow up with a specialist on Monday the 12th after thinking I wouldn't be able to see one until Nov. 7th. Then last night a woman overheard me talking to her friend about my situation and she said "you see those two beautiful little blond headed girls. I had them when I was 33 and 35 and I have PCOS. And I was a lot heavier than you at the time." I didn't know what to say. I really can't express how much those kind of stories give me hope and signs of inspiration. Even from friends of facebook I know of women with PCOS who have been able to have kids. The women even told me she couldn't take the metformin, it was just too hard for her stomach to handle, and she still had 2 little girls. I feel inspired not to give up hope. That when I am ready, hopefully I can start trying right after Dec. 2012 (which would be Jan 2013) after Sean and I finally have our wedding ceremony. I'd start earlier but I'd like to look good in my wedding dress. So that would make me 29. And I would have been preparing my body for a full year and a half to get primed and ready. LOL I sound like a racehorse or something. I think when you can't find inspiration within yourself you have to ask God to show you and look around and you will see Hope all around.

Post 103.... A Break

Finally I feel like I caught a break. After this morning disasterous attempt to schedule and appointment with a women's doctor ( the receptionist hung up on me and they couldn't see me until Nov. 7th), my doctor finally called me back. She said that the pelvic ultrasound absolutley showed what we already knew that I had PCOS, but that it didn't show any large cycsts or endometriosis, which she suspected would show. She is afraid more testing is needed. I feel grateful they didn't find anything, but I still need to figure out what is causing my extreme pain. I caught a break and will be seeing the doctor my doctor went to for the same thing. Dr. Grewitz. She warned me she is very firm and to the facts, but that she is good. If she is good then I am good. I see her Sept 12th. Thank you HP, so much better than Nov 7th!