Period.

Well, my last period was November 2008. Yesterday I {think} started my period. I've blogged on here before about my struggles with my period. It has been a driving force behind my eating disorder. I know that sounds weird, but once I learned in school that you had to have a certain amount of body fat in order to have periods, my goal was to not have one. When I finally started my period in high school, I thought it meant I was fat {no, I do not think all the women in my life who have periods, are fat}. I would starve myself until my periods went away. Well, I'm doing much better in the food and weight areas of my life, but I must admit that I see an obese version of myself in the mirror since I started my period yesterday. I feel like such a freak.

I am just spotting right now, but the pain I'm experiencing feels like I should be bleeding much more. This pain is absolutely excruciating! I am even more attached to my heating pad than usual, and drinking lots of chamomile and lavendar tea. Last night i would wake up every two hours, which was right as my pain meds would begin to wear off. But even with the pain, I am choosing to embrace my womanhood. At 28 years of age, although I could probably count on two hands how many periods I have had, I need to embrace it. I need to love my body completely. God made me a woman and I choose to be grateful for that. I also strongly believe in mind/body/spirit connection. I cannot loathe my body and the parts/functions that make my body a woman, and expect not to be in pain. So as I experience this, I am staying in prayer and asking the Lord to help me through it.

Well, there's my vulnerability for today. Call me crazy, but this is me. These are my struggles and I choose to gently love myself through them. *Exhale*

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Time

Today I am thankful for time. I know it may sound like a strange thing to be thankful for, but I was talking to my best friend today about this year. Coming to terms with my illness this year has been a major process. It has evolved over time. I went from being so hopeful before my surgery, when I was just certain it would have me healed up and back to normal in no time, to after that feeling defeated and frustrated and pissed off, to denial. I feel as though I have experienced a sort of grief process. I have had to grieve my "old normal,' and learn to define my "new normal." I feel that time as well as the supports in my life, and even my job, which was the driving force behind me having no choice but to come to terms with the fact that my life is just not the same anymore- has given me the opportunity to define my "new normal." Some things I have had trouble accepting are: there may never be a clear cut answer to what's wrong, I may need long term medications for pain management, I am not going to be able to maintain the activity level I once did, it may be some time before I will work full-time, and many more. But I am getting there. I am learning to cope. I am learning not to shut others out when I feel lousy. I am learning that even with my "new normal," I deserve to be loved and cherished, and that I will still find a mate who God will give the ability and desire to partner in this journey with me. I am learning that my struggles can be someone else's blessing if I approach them with grace. As I realize how far I have come in this battle with chronis illness, I smile. I am amazed at what the Lord has and will continue to bring me through. What an incredible journey!

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Beauty

Im admiring my beautiful view of the city today!

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GI Stuff & My Lifestyle Change

***This post contains TMI****

So, now that you have been fairly warned, I will tell you about some good news today.
Part of the reason I am living with this new, quite restrictive food plan, is because of my painful BMs (bowel movements). When I did this food plan before I had lost too much weight and had to quit, but it really improved my quality of life in terms of not wanting to crawl in a hole and die due to the hours of excruciating pain that followed each BM. It was truly a nightmare. Anyway, the good news of today is that I had one this morning and it hurt, but not nearly as bad!! I can't believe it!! Sooo exciting!!

On another good note, I had an appointment with the pain clinic yesterday. I have to say, I was quite nervous. I was nervous about many things: being seen as a "pill seeker," having a provider that didn't seem to care, hear or want to understand what I am going through, etc. Well, none of the above happened!! I am STOKED that the NP I saw there, was super kind, attentive, empathetic, competent, thorough and had a hollistic approach, which is an awesome added plus! We decided on the Lidoderm Patch, Oxycodone (test to see how many I need per day, and then decide if I should try something long-acting-which scares me), and Gabapentin/Neurontin. Soooo, I guess we will see how this new plan goes!!

Wish me luck!

Yoga & Diet Update

So, months ago I purchased, "Yoga Meltdown with Jillian Michaels," on Amazon {which by the way, I am a bit obsessed with the bargains there-click here to buy}. I have always been an athlete and this year it has been really depressing for me as I've become quite sedentary due to the pain. Also, I have always had a great figure. My body has always been lean and toned, and I have been noticing my composition shifting to less tone and more body fat. It has been very difficult! Call me vain, but it's important to me to stay lean and toned and quite honestly it matters to me. Anyway, luckily I'm blessed with great genes {thanks God and Mom!} so laying around hasn't effected me as much as it would some, but ok, I'm rambling... I finally put the dvd in yesterday afternoon and had a FAB-U-LOUS workout! It was great, low impact, and I survived it! I have never been a huge fan of work out videos- they tend to be really cheesy, but this was a good one! I am really excited about this! I am quite sore today, so that on top of the pain, is rough, but sore means progress, so I'll take it *smiles* I am going to do the work out every other day and continue stretching in between. I just really don't want to let my body go completely, and I want to do as much as possible for my personal wellness! Yay for Yoga and yay for self-confidence!

As for the diet, it's going well. A little review... here is what it consists of:

*no gluten/wheat

*no dairy

*no sugar

*limit soy

*no caffiene

*organic meats only

As you can see, this diet is quite intense! It can be difficult to follow without letting myself lose too much weight. I really think I need to stick to it as a new lifestyle since it helped my GI issues so much before, but I can't compromise my health in other ways either. I am trying to eat lots of nuts and avocado since I'm already down 5 pounds {the weight part is tricky for me as I have a hx of anorexia- I have to find a balance of sticking to this but not obsessing}. Anyway, some things I am enjoying are:

*guacamole- I grab a nice ripe avocado and mash it with my favorite fresh, organic salsa. Yum! Then dip with O (organic) blue corn chips. Delish

*Alexia All Natural Oven Fries- you can find them in the O frozen section at the grocery store. I love the garlic, rosemary, olive oil flavor. Since I cant eat bread, I bake the fries and dip them in eeoo and balsamic vinegar. Sooo good! And the olive oil provides some extra calories.


Yay for wellness.

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2 things that made me smile

1. My brand new heating pad!! I use heating pads all the time. I need them at work, at home... always for the pain. My old one was literally falling apart, thus becoming a fire hazard. Ha.

2. This kit I received in the mail. It is for Endometriosis research. I will add the link about it later. It's exciting for me because I want to help find a cure.

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I HEART RESIDENTS!!

WOW, WOW!!

So, I just had a dr appointment today, and can I say again that I LOOOOOVE medical students/residents??! They tend to be so incredibly eager and I love that! Of course, we didn't get to the bottom of what is going on in this lovely body of mine, but she actually asked some critical questions and believe it or not, seemed interested (imagine that!) in what the issue is and why I am barely functioning with all of this pain! It was just encouraging to actually see a provider that is excited about her job and rather than being completely intimidated about my condition, she was interested in helping.

She didn't assume I was looking for pills- she knows I want answers and I want more than anything, to experience and FULL LIFE!! :)

So, anyway, that's my good news of the day. :)

Welcome, ICLW!

Welcome to my blog! I am a 28 year old woman battling chronic pelvic/low back pain. I have endo and major GI issues, and some things with my pain don't all seem to add up to just endo. I guess you could say I am a complicated "medical mystery." This pain issue has taken over my life. I used to be an avid runner and just overall an active person in general. This year has been quite sedentary and I am on intermittent FMLA at work. My situation can be depressing at times, but my trust and faith in Jesus, and my support from my awesome friends and family keeps me going! I am SO blessed by how loved I am! Well, that's all for now. I am on my way to the dr right now.

Hugs!

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Mirena??

On my way to the dr to talk about Mirena IUD as a possible tx for the endo... I am not so sure about it...

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Diet

So, I have started a diet similar to the "Endo Diet." This is actually something my naturopath put me on a couple of years ago. It really helped me with my GI issues, and I wasn't struggling with the pain so badly. The problem with it was, I lost WAAYYY too much weight and it got me into some old cycles that were not healthy. Well, now I am back into my "healthy" weight range, and I want to start it up again. So I am doing:

No wheat/gluten

No dairy

No sugar

Limit soy

Organic meats

So far it's going quite well. I think I have been on it for about 3 weeks now and yesterday I began seeing results with the GI issues. So far, so good!

One of my favorite things to eat rtight now is avocado!! YUMMY! I make guacamole almost every evening and eat it with my favorite corn chips. SO GOOD!! What food do I miss?? Dark chocolate Snikers bars! Ouch! It's tought to say goodbye to those so I think I will allow myself one a month! OR... maybe once every two weeks. Yeah, that sounds more doable! Haha!

Sleep!!

I am not sure if I have written much about my chronic insomnia on here... I have battled this for years. Insomnia, as many of you know, coupled with chronic pain, is just a very bad combination! Trying to manage pain with no sleep is almost pointless.

Well, my dr started me on Trazedone this weekend. Day #1 I slept great but had a killer headache all day. My body is resistant to most sleep aids (prescription and OTC) so since this one actually worked, I wanted to give it another chance. Two days later, I'm rested and headache free!! YAY! I seriously feel like a brand new woman! My pain is still the same but it is worlds easier to get through the day when I am RESTED!

AHHHH, sleep, I love ya. I really do!

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Grief

Does anyone else find themselves going through a sort of grief process with endo?? I'm really missing "the good days," when I made plans with friends and kept my word, when I went to work over 40 hours a week and still had the energy to run and keep my body in perfect shape, having extra money to spend on cute shoes and clothes instead of medical bills, not having to worry about how many pain meds I took yesterday, not being on a constant emotional roller coaster, thus keeping my loved ones on one too, as they walk on eggshells not knowing what's going to bring me to tears... and the list goes on and on and on... chronic illness is not fun. I try to remain hopeful, but today I just don't have it. I miss the good days.

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New Pain Scale!!

Well, I am actually not sure how "new" this is, and honestly one of my least favorite things to be asked at the dr. or hospital is, "describe your pain to me on a scale of one to ten." But on my endo support page someone posted this:

Mankosi Pain Scale

0- pain free

1- very minor annoyance, occasional twinges. No medication needed.

2- minor annoyance, strong twinges. No medication needed.

3- annoying enough to be distracting. Mild pain killers (Motrin, ibuprofen, etc.)

4- can be ignored if you are really involved in your work, but still distracting. Mild pain killers effective for 3-4 hours.

5- cannot be ignored for longer than 30 minutes. Mild pain killers effective for 3-4 hours.

6- cannot be ignored for any length of time. Can still work or participate in social activities with stronger pain killers (Codiene, vicodin, etc.) Effective for 3-4 hours.

7- difficult to concentrate. Interferes with sleep. Still funtioning with effort. Strong pain killers only partially effective.

8- physical activity is limited. Can read or converse with effort. Nausea and dizziness set in as factors of the pain.

9- unable to speak. Crying out, moaning. Near delirium.

10- unconcious. Pain makes you pass out.

I thought this one was really good! Giving it to my doctor!

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UGH!!!

OMG, I just really need to vent right now! I feel like CRAP today! I had a weekend of trying to relieve myself of a week's worth of constipation- now that problem is "fixed," but I barely slept last night and I am in SO MUCH PAIN today, at work, and running out of pain meds. I am STILL waiting on some blood work so I can figure out why I am so damn tired all the time, why my scalp is flaking off, why my skin is so oily it's disgusting!! This is definitely one of those days where endometriosis is kicking my ass and I'm just too tired to fight back. I am trying to find a specialist in my area because I am just not pleased with my doctors currently. This is so stressful!!

Now What??

Well, it seems my gyn has thrown in the towel. She shoved me over to my primary care doctor to discuss pain management, and basically doesn't know what to do next since I refuse to start lupron. I am just so afraid of that stuff!! And what if it works?? Then what am I going to do, have a hysterectomy at 27?! I don't think so!! Don't get me wrong- I don't envy my dr. I know this has been a long road with me. Obviously you run out of ideas at some point but it's just so sad. So now my dr. has me on vicodin, which sucks and usually does nothing for the pain. I hate this. I just needed to vent. :(

Sorry, ICLW!

I didn't do a very good job keeping up this time. I just had a lot of personal and medical stuff going on and got too distracted. :(

Numb

I don't know why, or exactly how to explain, but today I feel numb. I feel completely void of emotions for some reason. My sweet, wonderful boyfriend came over for the afternoon and he was so happy to see me. I feel bad because I think I was happy to see him too, but I couldn't feel it. Maybe it's the pain meds. Maybe it's the pain. I am not quite sure but I just don't feel like me. I guess since my health has been so bad the past few months I feel this way often. And then guilt kicks in. I begin to feel guilty because I am not a good friend, girlfriend, sister, daughter or employee. That's all for now. :/

I <3 Coloring!

I love to whip out the books and crayons when I'm feeling yucky! Try it sometime! :)

Blogger Alias

Well, I do have 2 blogs. One is open and friends and family know about it and follow it. This one is "anonymous." I do this because I write about some of my innermost thoughts, feelings and experiences that I dont share as openly. However, after finding this blogging community of sorts, I am really loving the support, feedback and exchanging of info about the harships of endo, pelvic pain, faith and other difficulties we face as women. I am trying to think of something to name myself. It may sound cheesy but I have seen others do it and I actually think it's kinda cool! Haha. So I am trying to think of something... let me know if you have ideas.

***TMI ALERT*** My recent GI issues. :(

Now, rather than my pelvic pain being all related to my female organs and endo, I have some severe GI issues going on. It has been miserable to go through. Specifically, with constipation. I have had issues with it on and off for about 20 years... I had seen different specialists over the years, and recently had my 2nd lap, which included removal of endo from rectal tissue. Now I am dealing with SEVERE constipation. I spent 3 days in the hospital last week, and I was released last Saturday. There was about 5 lbs of rock hard stool in me and it took them 3 days to get me to pass it. :( Now I am taking Miralax drinks, Senna, stool softeners and fiber supplements. I feel so exhausted because I am having intermittent diarrhea, but the doctors don't want me to let up yet. When I go #2 it is SO PAINFUL even if it's "loose." It sucks- I start shaking and sweating and I have to push forever no matter how much and how soft or hard it is. Sorry for all the yucky details, but I am so embarrassed and IN SO MUCH PAIN. Now the docs don't know if it is more endo or an inflammatory bowel disease such as Chron's. We have to wait a little longer to check because everything is so inflamed. I feel like I'm in hell. :( In the next two weeks or so I will see a GI specialist who will be able to help sort this out. My body is such a mess and now I am constantly obsessing over when I last "went" and when I will "go" again. UGH. I just want to be well again.

ICLW May- 15 Things About ME! :)

1. I want to be a mommy. I want to be pregnant with that darling, kicking belly and experience the joy and pains of delivery and nurture and love my children through their lives.

2. I want to live in China for at least a year at some point. And work at Bethel, the orphanage for blind children there.

3. I want to be PAIN-FREE! some background

4. I want to start running regularly again. I want my pain level to get low enough that I can run and run and run... I miss it.

5. I have a wonderful boyfriend, but soon I will be ready to enjoy the challenge of marriage. Also, secretly, I hate sleeping alone (we are waiting until marriage), so I can't wait to snuggle all night with my hubby someday.

6. I am a hard worker. Kind of a perfectionist. I expect a lot of myself, so being so ill and in pain life has been rough for me. I feel worthless often these days.

7. On the flip side of #6, I have to constantly remind myself that my purpose in life is living to love and serve Jesus Christ. Which means, to love and serve others. I am really challenging myself to choose JOY each day whether it is spend all day in bed in pain, or at work helping others.

8. I think romantic love can be so complicated and confusing at times, but it can also be worth it.

9. I trust easily. I immediately see good in each person and I am learning that some people just aren't good. It sounds naiive, but I am trying to be more careful without losing the part of me that gives others the benefit of the doubt.

10. I have grown up "thin and pretty"- whether I have believed it or not, I have heard it from others. I am constantly trying to focus inward on how "pretty" my heart is each day. I hope to teach that principle to a daughter in the future. Inward thoughts and actions and integrity are so much more worth focusing on and "beautifying" than outward looks. my post about this here

11. Still, no matter how much I focus on my heart I will ALWAYS envy those with extra long and thick eye lashes!! Haha. I want them SO BADLY!!

12. I can be quite an introvert. Sometimes I think if I were locked in my apartment for a week all alone but had some good books, movies and dark chocolate, I might be just fine.

13. I do really love my friends and family though. I have been blessed with some wonderful people in my life.

14. The beauty of God's grace overwhelms me. It makes life not fair, but that's the beauty of it.

15. I LOVE SUNSHINE!!! I wish I could have a full-time job where I am required to lay out in my suit eating cold strawberries and drinking filtered water.

Welcome to my blog, everyone!! :)

I had a hospital stay last weekend. Maybe I will post about it tomorrow. I wanted to kick off ICLW with a happy note!

***Hugs***

Facebook Support Group

I joined a Facebook group a couple weeks ago that is all women and it is basically a support group for those with Endometriosis!! It has been SO HELPFUL to go and vent frustrations and have so many others who know exactly what you are going through. I have found it to be really helpful when I am feeling lonely or down. And it also feels great to be able to help others and respond to some of their posts. Just wanted to spread the word on this community.

Another Post-Op Update

Well, I am 20 days post op now. I am back at work as of yesterday and the pain is moderate. I'll take that over completely debilitating any day! Last week they started me on Depo-provera to decrease chances of endo returning. I am somewhat hesitant about this for 2 reasons:

Not that I have to worry about my weight, but the dr. said it would increase my appetite, so that should help my continued eating disorder recovery. Luckily I am in a place where I don't panic at the thought, but it was still a little scary.

Also, I am lactose intolerant, therefore I get my calcium intake from supplements. I know Depo can decrease bone density and I already have some of the risk factors. Answer: we will test my bone density in one year.

For now, I will trust the docs on that.

The most annoying part of this whole situation is the "bathroom" issue. I still cannot GO! I am sooo constipated all the time and it is just a nightmare, and I am sure a major source of the pain. :( Poor stopped up me. I am working on it... fiber, stool softeners, fruit and veggies and TONS of water!!!

Hope to be out of pain soon, but it's great to be working (through the pain) and not home laying in bed feeling worthless. I continue to praise God for giving me such gracious employers throughout this whole ordeal!!!

Oh, I almost forgot, I had my first ever acupuncture appointment on Friday!! I loved it! I hope it helps. I think I will go back next week. :)

Recovering??

This laparoscopy has NOT at all been the way I had expected it to go. I am going to give the timeline of events:

Wednesday, April 7:

Laparoscopy surgery in the afternoon. When the nurses discharged me they told me there was quite a bit of endo found and removed. They gave me the typical discharge instructions and made it sound like I would be feeling awesome by the weekend. I had chosen to stay with my parents for the remainder of the week. When my boyfriend dropped me off I was actually feeling pretty good! The anesthesiologist did a fabulous job, so I was very alert with little nausea. They had also drugged me wonderfully so I was really comfortable!

Thursday, April 8:

My incision sites were quite sore, the pain was moderate, I was gassy and had moderate shoulder pain. It really was not too bad- I felt what I had expected.

Friday, April 9:

I was having some difficuties staying on top of the pain with the meds they gave me, so we had to go with something stronger than vicodin. Same symptoms as before, but maybe a little worse.

Saturday, April 10:

I had elected to have my parents take me back to my house to get some peace and quiet at my own place. Most symptoms were the same, but shoulder pain had gone away, which was great. At that point I was really expecting to be feeling better.

Sunday, April 10:

I woke up early and to my surprise my incision soreness was just about gone, my apettite was increasing and although I was still feeling quite a bit of pelvic and lower back pain, I was feeling energetic. I went for a walk around the block since it was sunny outside and came home and actually cooked myself some food. It was awesome. Unfortunately, by late morning/early afternoon, I felt I was dying! The pain was SO DEEP in my pelvic area, in my lower back and inner thighs. I was crying and panicking. I knew something was not right. I called the dr and the physician on-call happened to be the one who assisted with my surgery. He said that he was not surprised about the pain I was in and offerred to tell me the details of my surgery. YES PLEASE! So apparently a "fair amount" of endo was found on my rectal tissue. And behind my cervix as well as in the surrounding ligaments. He said that operating on rectal tissue makes the surgery "pretty dicey." He said many gyn surgeons dont even have the skills to remove it (yikes). My dr did a phenomenal job, in his opinion, but that my recovery is going to cause some deeper pain and my recovery will likely take a bit longer than a typical lap. Whew! I am so glad he could talk with me and share this information, but it would have been great to hear it on surgery day! Anyway, he then asked if I had any bowel issues prior to surgery. I told him that constipation had been a huge problem for me for quite awhile now, and that each time I went to the bathroom it was extremely painful during and for at least a half hour after. Ugh. But he said that was likely caused by the endo, and once i heal up it should be all better! Then I told him I hadnt used the bathroon since the surgery. EEK! He was quite alarmed by this and said the constipation needed to be taken care of ASAP. He told me what to take and to call in the morning.

Monday, April 11:

Well, I didnt poop. :( I was up all night in terrible pain-pain worse than I had ever experienced. I called the dr and they sent me to the hospital. I spent that day kept high as a kite through my iv's and praying to God nothing else was wrong. That evening my CT scan showed severe constipation. They said the pain was the result of stools built up and aggravating the areas that were trying to heal where the endo was removed. Ugh. Calcium Citrate drink here I come. I drank the bottle and was up pissing out of my ass for the next 14 hours or so... :(

Tuesday, April 12:

I was dehydrated and EXHAUSTED. My whole body was cleared out and I was feeling like hell and just hoping my body would begin to heal. I called the dr crying over the pain and she said I needed sleep. They got me some super hard core drugs and I finally slept that night and most of Wednesday!

Wednesday:

Stayed on meds and slept off and on all day. I could finally feel some healing taking place! Sure, the pain was present but it was definitely decreasing. I just kept my diet high in prunes and continued with tons of fluids and stool softeners.

Thursday:

Still improving, beginning to eat again.

Friday:

Emotional breakdown. I sobbed and sobbed, realizing the pain was increasing again and I was constipated AGAIN. Seriously?? Another Calcium Citrate drink...

Saturday:

Still constipated.

Today:

Well, I spent the morning on the toilet. Yuck. It sucked. I am in pain and afraid to eat. When will this end??? I have to go back to work Monday. Lord, please heal my body...

Joy!

Well, I am 4 days post lap today. Yesterday I was honestly getting a little nervous that something was wrong because I was in excruciating pain and I thought I should be healing faster. However, this morning of course I was still feeling pain, but more soreness. And I have been very constipated so I decided to go and get some apples at the store. I successfully took a walk around the block to the store! Oh, the things we take for granted, right!? I actually got to enjoy the sunshine and blue skies and a little walk to one of my favorite little organic markets. It was brilliant. Hopefully I am on the road to better days! Thank you, Jesus, for the beautiful outdoors and the ability to walk! :)

The Lap!

SO, I had my laparoscopy yesterday afternoon. It went very well and my surgeon said that he found what looked like endo and removed it ALL!! Yay! Of course, they are sending it for biopsy, but he expects there is a good chance I will be back to normal life and in minimal pain after I have recovered. I sure hope he's right!! Yesterday I was quite comfortable when they sent me home, but despite the pain meds I have been pretty miserable since the middle of the night last night. The incisions are very sore and there are two major spots in my lower pelvic region that just THROB off and on!! I hope it's just healing taking place. Iguess for now time will tell, but I am quite hopeful!! Well, I don't have the energy for a long post right now, so that's all for now!!

Fighting Anxiety...

First of all, I must say that I have an awesome surgeon/gyn. He has a holistic view of medicine and deep down I can trust him. Anyway, with all of this pain I have been really putting my faith in the laparoscopy. Each day I tell myself that the surgery will make it all better. Well, Dr. R. snapped me back into reality!! *sad face* I am grateful that he is realistic but it really shattered my dreams of being cured next week! During my pre-op appointment today he told me that we can hope they find something they can fix, but even if they do, I may not be out of pain. He also warned that it is also likely they won't find anything to remove and that's when I nearly burried my head in my lap and cried. I know it's common sense that laparoscopic surgery is not always curative, but I guess it's just been what I could hold on to to get me through. And now I don't know what to grasp. Yes, I am a Christian, and I do trust the Lord, but I am also pretty down to earth, and I can easily admit that my faith is faulty at times. It is so hard to trust God when He's really just not that tangible... I guess it is something to work through during these Percocet filled days...

Pre-Op

Well, I have my pre-op appointment for my laparoscopy today... that's about all I have the energy to post right now...

ER

Well, Friday was a difficult day. I started by actually going in to work. It was awesome, but after a couple of hours i was in too much pain. So i went home to rest and take some meds and all day the pain increased. It was awful! By early evening I was sobbing uncontrolably. I called my mom and since I rarely cry about physical pain she told me to get to the hospital. Since she was out of town as well as my boyfriend and most friends I feel comfortable asking, I called my wonderful Auntie L, and she took me in. I ended up staying there until 6 am! They did an ultra sound because they thought possibly one of my ovaries was twisted (!!!), and thank God it wasn't! However, they couldn't see the mass on it. I guess that suggests it is a cyst rather than something more solid, which is good, I think. Anyway, here I am, back at home waiting... I decided to spend this week at my parents' house. It is nice to have someone around to help me with things. I am really hoping my dr moves the surgery up when he gets the reports from the urologist and the ER tomorrow. I just want to be feeling healthy and vital very soon!

Here's to hoping for brighter days to come!

Something BIG.

OK, so I count this as good news. Today I saw the urologist. He looked at a CT scan of my kidneys and said that there are a few very small stones in each of my kidneys, but they are not large enough to treat or worry about. He says that the blood in my urine is likely from that. Next he did a cystoscopy (inserted a scope) on my bladder. He said my bladder looked healthy, but as we looked at the screen we noticed something quite large pushing into it. When I say large I mean something big enough that it wouldn't all fit on the screen. Yikes. SO, I am stoked because I just wanted them to FIND SOMETHING so we can FIX/REMOVE it!!! Thank the Lord they found something!!! On the other hand, it needs to be addressed and it would be nice to know what it is exactly. I don't have my pre-op appointment for my laparoscopy until April 1st. I have called my dr already to change that. I am really hoping and praying that he moves that up to tomorrow, perhaps, so we can get things moving along and I am not wasting another painful week in bed without any steps taken to get better.

**DEEP BREATH**

Trusting Jesus

Period.

Today I have another big confession. I have an intense, and I mean INTENSE fear and disgust with my period. I feel quite alone in this, so if you are in the same boat, please tell me! It started back when my period started in high school. I had learned in Health class that I needed a certain amount of body fat in order for my period to happen. So what did I think of when it came? Fat. The crazy thing is, I have always been thin. My family is thin and toned and so was (am) I. So this was crazy, but the blood also made me want to jump out of my skin! So I stopped eating and ran until my period went away. This did not take long. Since then, I have not had regular periods. The sad thing is, my doctors are quite sure that with all I have going on, getting pregnant will likely be a challenge. I try not no worry about this too much these days since it's not time for me to try yet. However, I am working on a more healthy outlook because let's face it, healthy periods are a part of "healthy womanhood" amd I need to learn to embrace it. I am getting older and this is important. What if down the road I am thirty years old and still crying when my period comes??? That is just plain ridiculous!! But, for now, it is what I feel like doing, and crazy or not, I am scared to death of it. That's just the truth of how I feel. Well, currently, I am on some hormones, and it is now the "time" for me to be expecting my period. I am in A LOT of pain, and I am scared!! I know in my head that I should be ecstatic if I start my period- it means my body is working and it's (possibly) fertile and things are looking up (maybe). But instead I am (legitimately) dreading the pain and already wondering if I have gained too much weight and even wondering how bad I want my health. I really have to work on this. I brought it up to my therapist yesterday but it didn't seem helpful. Ugh. I would love any thoughts or feedback on this.

Growing up pretty...

I had quite the interesting conversation with a close friend yesterday. It was so eye opening!! At some point I hope to be able to explain my heart on the matter eloquently, but here is my first shot:

We were discussing body image and womanhood. I have not yet disclosed this on my blog, but it is another quite significant part of who I am. I have battled anorexia for over 10 years now. Over the past year or so I have had a relapse and I am currently working my way back to a healthy weight. I argue to my boyfriend that my eating disorder is not about image. I say this because to me, it seems to be a coping mechanism, and unlike in my past, I do not usually view myself as being fat. I still cannot figure out why I will starve myself and think of my looks so much when I know I am thin. Well, my friend said to me yesterday, "It is hard not to think of your looks all the time when you 'grow up pretty.'" This statement really rang true to me. When I think back on my life, I have never thought of myself as much better looking than your average young woman, but since I can remember, people have remarked on my beauty and thin figure. I was always told I was beautiful and I had a "perfect body," once puberty hit. I was even voted "Best Physique'" by my high school senior class ten years ago. I mention this because I had a realization that I think of my looks so often because in some ways I have been "known for" my looks. It is not what I chose, it is what I was handed. I am not complaining nor am I boasting; this is just simple fact. So at times I am thinking, "what if I am not pretty anymore? what if I am no longer the thin one?"

I speak often about how I want to be known for my heart. For my kindness, integrity, generosity and loyal friendships. And I try to think that way, but those image thoughts continue to enter my head. This really helps me when  I think of possibly having the opportunity and blessing of raising a daughter someday. What if she's naturally beautiful and thin? What if she isn't? Well, either way, it is so imperative that I always compliment her heart and her attitude. It will be my responsibility to make sure he self worth is founded on how God sees her, and on how she sees herself from the inside out. This is something I am striving to work on and be concious of as I compliment others'.

What are your thoughts on this?

Blah, blah, bladder...

So, now there are some major bladder issues, apparently. I am way stressed and losing sleep over all of this mess. I guess there has been blood in my urine for the past few months (yes, I noticed, but my dr. didn't mention it). When I approached my dr about the issue yesterday she was alarmed and was clearly embarrassed and trying to make up for not mentioning it. She took yet another urine sample which had blood in it once again. She would like to rule out contamination. Again, I am not sure how it would be contaminated with blood several times when I am not menstruating or having sex, but now I will be having a catheter (yikes!!!) inserted into my bladder today to take the sample straight from my bladder. I don't know if any of you have done this but I had it done over 10 years ago, and I remember it VIVIDLY-total trauma!!!! So, today I will be loading up on the Percocet and having the most painful thing EVER! :( I will let you all know how it goes... It is just so hard not to worry. *frown*

Sweat!!

Ugh, so now I am experiencing some major hot flashes during the day and I am waking up at night with wet sheets and hair- literally, wet. What the heck is that all about?? The pain has been terrible last night and this morning. I have come in to work for a couple of hours and then it's back home and to the hot bath with lavendar epsom salts and my bed! I am really getting sick of this! It sucks so bad. :( I will be seeing my gyn tomorrow, but I am not feeling very hopeful for answers. I am just hoping she can write me a script for something that will actually relieve the pain! I don't even expect to be out of pain completely, but even a low level of ability to function outside of bed would be great. I wish I could figure out what all of this sweating is about... it's gross and it's giving me anxiety.

The BATH!!

I found a new love!! The bathtub!! Oh my gosh, it has never felt better! For the past three days the hot bath has relieved my pain (temporarily). If I could move into the hot bath and bring waterproof books, my phone, movies and pillows, I would stay in there constantly! I recommend this for anyone who is suffering. It hasn't been this way in the past but this week for some reason the bath has worked miracles for me!!

Ahhhhh :)

PT Details as Promised

In a recent post I said that I would be beginning PT (physical therapy) for my pelvic floor issues this week. Since I was not able to find much information on what these appointments would include in detail, I promised I would write details of my appointment for anyone who may have the same question at some point. My PT has a private office where we discussed my health history, and specifics related to my pelvic pain. In that respect it was similar to a first visit with any new medical provider. After that she did a great job explaining the pelvic floor. She used a model of the pelvic bone and pelvic floor muscles on a woman and gave me a short anatomy and physiology tutorial (I love those by the way). She really knew her stuff!  Anyway, of course, next I was given “the sheet” and asked to undress from the waist down and put my feet up! I don’t think I will ever get used to that. She said that she would be inserting a finger and touching my “trigger points.” She would go around like a clock, 12:00, 1:00, 2:00…. Stopping at each point to see how tense the muscle was and to help relax the muscle by applying some pressure. Next she lubed her finger, inserted it and did just what she described. Luckily I was comfortable with her. It turns out that even she was surprised at how tight I was and just how tense each of my trigger points were. So she only touched every other one today. She helped me work on some breathing techniques, and I would say this was the most helpful part, because together we could tell when I was consciously relaxing, which will help me practice relaxing my pelvic floor at home. After that was done (and I was in a lot of pain) she set me up with a block under my knees and put a heating pad on my pelvic area and another between my legs. I had heat for 20 minutes and went home! I can see how this will be helpful, I just hope future appointments aren’t this painful. One piece of advice I have is, make sure you go to someone you have gotten a referral from and that you feel comfortable when you meet them. The sessions are quite intimate, and as far as I know, we will be doing trigger points at each one. It would be absolutely horrific if I was with someone who creeped me out!

Good luck!

OUCH!!

So I woke today feeling extremely hopeful this morning! It was the third morning in a row that I woke up in less than moderate pain in weeks. I am supposed to be running an 8k in the Shamrock Run this coming weekend and I have not been running in 5 weeks (yikes)!! I was really excited to get back to it this afternoon, however, here I am, at the end of my workday in a whole lot of pain. I don't know what it is, but sitting straight up in a chair just KILLS me by the end of the day! Does anyone else experience this??? It's like there is a knife stabbing through my pelvis. I can't take it. I guess the running shoes will have to wait for tomorrow (sigh). Time to get home to my bed and heating pad [insert swear word here] I am sooo disappointed.

Mystery Therapy

Wednesday morning I will have my first physical therapy appointment. When I saw a specialist 2 weeks ago, he concluded that I certainly have PCOS, but luckily, I do not have the metabolic symptoms (weight gain, high blood pressure). He also determined that my pelvic floor muscles are EXTREMELY tight (vaginismus), thus, I am having constant involuntary contractions. He said this could also be related to a history of trauma and he noted that it's a positive step that I am working through that in therapy. The plan is that I will go to weekly physical therapy and if there is not a drastic improvement in my pain over the next 4-6 weeks, he will perform a laparoscopy (finally). I have been in so much pain lately that I have begged my general gyno to do one, but she refuses since I had one 6 years ago that provided no answers. However, this doctor told me that he can tell from looking at my incision scars that there was no way they were able to see everything from where they entered the scopes before (swear word), so since he does them routinely he is confident that if there is something going wrong in there he will find it. Wow, I just wanted to hug him! It felt soooo good to have a doctor give me some actual answers and directions rather than throwing hormones and pain pills at me. I am so curious (and a little nervous) to see what this physical therapy is like. I am sure it will be a little awkward. I promise to post as many details as possible for those of you who may face this unknown in the future. It is really not something that's talked about.... Wish me luck!

Background

I am 27 years old and I have been battling chronic pelvic pain for roughly eight years. It has been a long road of seeing several specialists, trying different interventions and medications and even a surgery in there a few years ago.


This past year has been especially difficult as far as painful "flare-ups." However, I have hooked up with an amazing naturopathic doctor (email me for name) and as I have not been too impressed with my general gynecologists, I have found someone outside of my insurance who is also quite impressive. I just had my first appointment with him and he has some ideas that we will be exploring over the next several weeks.

The working diagnoses at this point are:

Hypothalamic Amenorrhea- recently ruled out with Provera/Progestin Challenge
Polycystic Ovarian Syndrome (PCOS)
Endometriosis- 2nd excision lap 4/10
Vaginismus/Pelvic Floor Dysfunction
Irritable Bowel Syndrome (IBS)
Inflammatory Bowel Disease (looking into which one)- 5/10

I will add more information as time permits. Please feel free to email me at hopeforhealing11@gmail.com. or leave a comment.