Goodbye 2008, Hello 2009!!

2008 sums up with one word loss:

I lost alot with surgery but hopefully (hands in prayer here on my knees) this will be it. I'm still recuperating from it--emotionally and physically. I have my good days and bad days...my good moments and my bad moments.

I lost people that I thought were my friends. Friends who adopted as well. I was dropped like holey pair of shoes. No word, no explanation.

I lost my old 1994 Corolla. She did us well and is just a baby yet with just over 104,000 miles on it.

And don't even mention 401K...mine took a big beating.

However I gained so much as well:

I can drive more than 15 minutes without pain. Half an hour is pushing it at the moment but it can be done.

I gained some friends as well...they are not local to me at all but still within the adoption community and can sympathize what I'm going through.

I gained a 2007 Toyota Sienna LE. I haven't yet been able to get the monster into the garage but I'll learn one of these days (I better since Toyotas last so long).

I gained a big reduction in my pain levels with my endo. Thank you Dr. Albee and Dr. Yeung, Dr. Sinervo, Muriel, Heather, and the rest of the staff that we dealt with at the CEC. You made me feel like I was the only patient in the world that you were dealing with at that point in time and made me feel at ease. THANK YOU!!!!

Out with 2008 and in with 2009!!

We are just hoping for one where Jeff can use his vacation for vacation and not to take care of me after surgery. We hope that we can do some work on our home this year. I'm hoping to be able to drive as far as my Sienna's gas tank can take me.

I'm hoping for a healthy happy New Year for my family and for yours.

Song that I heard on TCM recently

I was watching TCM this month and this hauntingly beautiful song came on. I thought about everything that has happened with me this year:

The loss of me being able to see Dr. Martin Robbins in Maine due to him losing his colo-rectal surgeon

Me deciding that Dr. Albee was definitely "The Surgeon" to go see

My good faith to see my insurance company's "Top Surgeon" who turned out to be a major joke since I "don't have endo" and that "all of the records that he received from me were worthless and irrelevant"

My decision that I would continue to have surgery done by Dr. Albee

Me learning that I lost my uterus sometime in the evening/early morning hours from Jeff along with my cervix and part of my vagina

And me crying over the loss of it all shortly after surgery

And right before Christmas, the flood of the emotions that I had when we were trying to conceive back during Christmas Eve/Day of 2001

In the midst of this sorrow, I heard this song on TCM. For some reason, it's striking a chord with me right now.

I Made it Through

I'm proud of myself. I've made it through Christmas Eve and Christmas Day. I am thankful for several of my friends who I talked to over the phone. I needed that small pick me up.

We went to Mass Christmas Eve and I broke down and cried during part of it. I almost walked out of Church until I could compose myself again and rejoin the mass. I don't even know what exactly set me off...was it something that was said? Was it something that I was thinking about at the time?? Only God knows.

After the kids went to bed Christmas Eve, I went through the motions of putting out the milk and cookies for Santa and the carrot for the reindeer, hanging Baby Jesus on the Christmas tree and putting him in the manger underneath it, putting the presents under the tree, and more. I pushed myself to get it done.

Then when I had nothing else to do, I couldn't fall asleep. 1 am and I couldn't fall asleep...

Christmas Day I had my family here after the kids opened up their Christmas presents from Santa and from Jeff and I. I wanted to crawl into my room and spend the day in there crying at times.

Somehow I made it through...

People told me to have a hyst. People told me that I would feel no different after having one (or feeling so much better) and those people told me a pack of lies.

I don't feel normal.

I don't feel sexy.

I don't feel like a woman.

I don't feel like sex is the same (except for the lack of pain) but I have no drive for it.

I don't feel like some people understand me.

I do feel like crying.

I do feel like screaming.

I do feel like wondering when in the world a cure for endometriosis and adenomyosis will happen (besides having a hyst, multiple surgeries, and various types of prescription drugs).

I do feel like some people don't understand what I'm going through. I do feel like those people may never understand.

But I'm proud of myself for surviving Christmas. Hopefully next year's Christmas will be better for me emotionally. I'm keeping my fingers crossed here and praying.

Christmas is Here...My Heart Isn't in It

I wish that I was better emotionally right now. Feelings of 2001 have been flooding back with intensity and I'm wishing that I could crawl into a hole until the holidays are done and over with. You see I was peak in my fertility level Christmas Eve and Christmas Day 2001 when we were trying to conceive. I hoped and prayed that I would become pregnant...I never did. I never did experience that positive pregnancy result or experienced a baby inside of me. I am grateful (searching for the right term to use here and feel like I am failing miserably) that I didn't experience a miscarriage or ectopic pregnancy or a stillborn. I had several friends that experienced the first two things and I cried after getting off the phone with them after listening to them cry and me trying to remain calm and supportive long distance.

I am eternally grateful for what I do have: my loving husband who has stuck by me and has put up with my emotional rollercoaster ride back when we were trying to conceive, losing my friends, and dealing with me emotionally since my surgery, my kids who are my joy and my light, my family who helped after my surgery and watching my kids while I'm off at my various doctor's appointments, and my friends who have called and sent me emails and cards checking up on me and have listened to me cry on the phone.

This year I didn't do Christmas cards (the first ever) but did do a newsletter and sent the Christmas photo with Santa for the adults...for the kids they got their Christmas cards. I think I've sent off about 170 cards this year.

While I'm grateful that I'm alive, since so many things could have gone wrong during the surgery, and that the surgery has lessened the pain, the hysterectomy has made me feel slightly less than a woman and less than sexy. I'm grateful to Dr. Albee and Dr. Yeung for removing all of the endo that they could from my body. I'm grateful that my research led me to have surgery with the doctors at the CEC.

I hope that emotionally I start feeling better soon...that I'm back to myself again. I have my good days and I have my emotional moments. For Christmas Eve and Christmas Day, I'm setting aside some me time to mourn. I need to.

For those of you reading this, please read and sign the petition to Stamp Out Endometriosis. It means the world to me right now.

Ultrasound Results

I got the ultrasound results back...normal. Of course I knew that already since endo won't show on an ultrasound. I do have a small simple cyst on my remaining ovary...nothing to be worried about according to my doctor.

Ultrasound Today

I just got back from my ultrasound. The u/s tech had trouble finding my remaining ovary. When she did find it, she mentioned that there was a small cyst there. I should hear about the results in a few days from my doctor. I was hurting so much from the ultrasound that I was crying in Jeff's car in the parking lot. I'm resting tonight...I need to.

Christmas is nearly here and I'm emotional again...

I'm trying to work on Christmas cards here...this year is just a letter with picture of the family with Santa (our annual thing to do since 2005). Christmas music is on but I'm finding things hard given the loss that I've had this year. Back in 2001 on Christmas Eve and Day, I was peak in my fertility level. 7 years later to the Holiday season 2008, I've lost my uterus and I'm mourning its loss.

I'm eternally grateful for what I have playing around me (although tripping over toys isn't fun). I never expected to be traveling to a foreign country besides Canada and adopt 3 beautiful kids. But still the hurt is there. I want to cry and mourn the loss but that will have to wait until later after my kids are tucked into their snug little beds for the night.

I read from somebody else on a message board that if you are depressed before a hyst, you will be depressed afterwards. I never wanted to give up my uterus but I felt like there was little choice given the adenomyosis. I feel pretty defeated with this disease. I don't wish these diseases on anyone.

Please if you read this and haven't read and signed the petition to Stamp Out Endometriosis yet, please do so. You know that this woman has suffered from it.

Migraines part 2

I have had an on and off migraine since Wednesday. Yesterday was the worse so far. I had to ask my dad to drive us to the doctor's for my littlest one who needed to be seen with an emergency. She goes back on the 10th for a recheck.

My dad stayed from that appointment until Jeff got home from work since I had a migraine and with my migraine medicine was sleeping it off (or at least trying to).

I've got a bit of a headache today but hopefully it won't be affected too much by the trick-or-treaters that we expect to get later on this afternoon and evening.

Right now Jeff and I are thinking that these migraines are hormonal in nature and I just came off the progesterone only pill and where I would have been in my cycle would lend itself to a hormonal migraine.

Back to nursing my headache...

Migraines

I know that I was taught not to hate but I'm sorry to say that I hate migraines. I had one last night. I tried sleeping it off with a nap which didn't work. I tried my more natural things of taking Butterber which didn't work. I tried aromatherapy which didn't work. I finally gave up at 10:30 and took my migraine med. An hour later I was sound asleep. Best night sleep that I have gotten in a long time...too bad it took a migraine for that to happen.

I'm off my progesterone only pill and wondering if I had a hormonal migraine last night with my one remaining ovary.

Lordy only knows with me...it could be anything!! I'm just praying for no migraines today.

The Weather and My Mood

Outside my home is cold, windy, raining, and dreary. Inside the home, while it's filled with laughter from my children, my mood is similar to the weather outside. I'm tired due to lack of quality sleep. I'm experiencing some dull abdominal throbbing at times but I think I know what that is do to. I'm feeling blue...and trying to shake the feeling. Somehow I think that if I can get the sleep and the pain under control, the blue feeling will go away.

Jeff helped me last night by cutting up some veggies for me to make soup this afternoon as a part of tonight's dinner. I didn't have the energy to do it yesterday afternoon myself.

I'm hoping to get over to the craft store soon so that I can pick out some grossgrain ribbon and some paint for a project that I'm trying to work on for my girls. It's a project that I wanted to do before my surgery. Hopefully I can go there tomorrow evening since today is just bad...

Not Coping Well Today...

Today is a bad day for me. I seem to be done with the ashy looking discharge but I have a reddish-pink discharge now. This isn't helping my emotions at all. I just want to scream, punch a door, and cry like I did when I was trying to conceive. I want to put up the walls and hide away right now.

Still Sore...Advil not Working

I was beyond miserable last night with pain. My pain med really didn't kick in after 2 hours even with 4 advil on top of it. I ended up falling asleep due to sheer exhaustion around 2 am. I woke up in the fetal position this morning before 7:30 when Jeff left for work.

My abdomen is quite sore. It's more of a throbbing ache that just won't quit. I want to cry but if I do, the act of crying will make my abdomen feel worse so I'm blogging.

I had hoped that things would be much different by now...that I was able to drive, that I wouldn't be in pain, that I wouldn't see my obgyn 3 times so far post op and twice before surgery. I do feel better overall. The pain that I had into my tailbone is mostly gone. The pain that I had daily from lower back pain is gone. The pain that I had in my thighs is gone. Most days my abdominal pain that I had daily is gone. So there is major improvements but it's been slow going as far as healing goes.

I'm taking each day at a time and right now it's more like each hour but hopefully one day you'll hear that I'm doing much better.

Wishing those of you who suffer from endo pain free days!

Wishing those of you who know of somebody who suffers from endo to educate yourself about the disease and be understanding of them.

Post Operative Check Up # 3

Today was my 3rd post op check up since coming back home from surgery. I still have granulation tissue which is about the size of a pinky fingernail and flower shaped. Dr. L had her nurse hand her the sticks with the silver nitrate on it. She applied them as quickly as she could to the area since I was in pain. I squeezed Jeff's hand hard...the pain hurt too much. With my other hand, dug my fingernails into the palm of my own hand trying to give myself another pain to focus on. Unfortunately that didn't work.

Dr. L. said that she'll update Dr. Albee with the results but not until after my December appointment so that she can give him glowing results. I'm updating him before then.

After the appointment, Jeff helped me into the car and the ride home was bad. I was crying most of the way home. I'm tired of heading over to Dr. L.'s office only to head home again still in pain.

At home, I recomposed myself so that I wouldn't be crying in front of the kids. I had to put on my brave face as I headed in the door. Dinner wasn't going to be prepared by me so Jeff ordered out.

I'm tired of the pain. I'm hoping it'll end soon however I have another post op appointment (post op #4) with Dr. L. the morning of December 2nd. If I'm not healed up by then, it'll be more silver nitrate for me.

Can you tell me this?? When will the pain end??

A B C

[*] A is for age: 21+ (I'm not telling since you should never ask a woman her age)

[*] B is for beer of choice: ewww gross!!!!!!

[*] C is for career right now: Stay at home mom, teacher educating others on endometriosis, endometriosis patient, endometriosis supporter (of ERC and of others who suffer from the disease)

[*] D is for your dogs name: Maggie

[*] E is for essential item you use everyday: my stove

[*] F is for favorite TV show: Heroes

[*] G is for favorite game to watch: my college basketball (GO SAINTS!!!!!)

[*] H is for Home town: Glenville, New York

[*] I is for instruments you play: my voice (love to sing), used to play piano, flute and piccolo

[*] J is for favorite juice: Orange and Apple

[*] K is for whose butt you'd like to be kicking right now: I can't mention it here but it's a sorry to say the least

[*] L is for last place you ate: Home

[*] M is for marriage: Happily married now 14 years

[*] N is for your name: Jen

[*] O is for overnight hospital stay: Yes twice for myself for the last two of my surgeries (23 hour stay), one 3 night stay for my oldest daughter

[*] P is for people you were with today: my family

[*] Q is for quote: Ask me about endometriosis and I would be happy to tell you if you have a moment or several thousand

[*] R is for Biggest Regret: not seeing an endo specialist sooner

[*] S is for relationship status: Happily Married

[*] T is for time you woke up today: 7:30

[*] U is for underwear you have on now: umm isn't that a little private????

[*] V is for vegetable you love: fresh sugar snap peas

[*] W is for worst habits: trying to be a perfectionist

[*] X is for x-rays you've had: chest (once due to severe chest pain that woke me from a deep sleep that put me into the ER, and several times last year due to pneumonia)

[*] Y is for something yummy you ate today: homemade french onion soup with homemade bread

[*] Z is for zodiac sign: Aries

7 Years Ago Today and Tomorrow...

Both images from CandleAndRibbon.org
7 years ago we were trying to conceive (this was our Plan B). My Plan A when I found out that I had endo was to adopt. When September 11th, 2001 hit, I wondered why I was trying to bring a child into a crazy messed up world. Should I just stop and not try to conceive? Should I just give up my dream to become a Mom??

I remember the day well. I went outside with our dog, Maggie. I met up with our next door neighbor at the time named Claire and was chatting with her and her youngest daughter, Abby. It was a beautiful fall morning a little crisp but not too cold. After talking with her for a bit, I headed back into my home.

I got a phone call from Jeff at work just after 9.

Jeff: Have you had the TV on yet??
Me: No why?
Jeff: Turn on the TV
Me: I turned the TV on which just happened to be tuned to NBC so the Today Show was on. (after awhile that seemed like an eternity) OH MY GOD!!!!
Jeff: Yeah I just wanted you to know.
Me: (after hearing that buildings even up in our neck of the woods might be targets) Come home please...you can't be getting anything done there??
Jeff: Can't yet but you're right
Me: Leave the building...I don't want you there. Please just come home (deperation at this point).
Jeff: Gotta go for now, just wanted to let you know. I love you.
Me: I love you too. Please come home soon.

I then called up my next door neighbor. I mention this to Claire so that in case she were to turn on the TV, Abby wouldn't see the stuff. She was in shock just like I was. She then let me go to tend to Abby.

I then went back to watching TV for awhile. I was glued to the TV set. Jeff and I had several phone calls between us. After awhile, Jeff called me back one last time.

Jeff: We're going home. They are evacuating our building.
Me: (shaking) I'm glad to hear that you're coming home. I'll see you here and drive slowly and carefully please.
Jeff: No problem. I love you.
Me: I love you too, Jeff.

It seemed like an eternity before he came home. I knew how long normally it took him to get here from his work but for some reason time was passing so slowly. Things seemed to be standing still or moving in slow motion. I kept telling myself that it was the traffic on the highway...it must be the traffic.

When I heard the garage door go up, I completely lost it. I gave him a huge hug when he got inside our home.

I kept thinking about all those people in the World Trade Center complex and the Pentagon and the people riding in the downed airplane in Pennsylvania. Why would I want to bring a child into the world with this going on?? With people killing innocent people?? How does one explain this to a child?? My head was pounding from crying and thinking about all of the day's events.

Then to see the family members searching for their loved ones with those posters of them...I lost it again. I prayed that I knew nobody in this. My college lost a bunch of its alumni including one friar...Father Mychal Judge.

I called up a friend of mine to check on her since she lives and works in the DC area for the government. She was okay and relayed the story of her events that day. Her roommate was by the Smithsonian Museums on the Mall and felt the ground shake and heard a weird sound. She thought they were having an earthquake at first!! She said that everyone that she knew was safe and sound. I was relieved to hear this.

I was up until about 3 am since I just couldn't sleep. I was wired to the TV set and too emotional to sleep until I was dead tired. Finally I crashed.

The next morning there was a call put out in our area (being that we are in upstate NY) to help our downstate neighbors. So Jeff went to donate blood on September 12th, 2001. He stood in line at the American Red Cross blood donation station in a strip mall near his work. The line was very long. He got there at 8 and stood in line all day. People came by with homemade sandwiches, cookies and more for the people standing in line. Home Depot from across the street donated gas grills and the local grocery store donated food to grill up for dinner for the people.

If you needed to use a bathroom, you just had somebody else save your spot in line and used one of the bathrooms located in a store at the strip mall. There was one business that was booed because they wouldn't allow any "non-customers" use the restrooms.

Jeff mentioned that there was an eerie feeling about all of this but there was a big huge sense of community involvement. It didn't matter what work you did, what color your skin was, whether you were upper, middle or lower class, you helped out. I couldn't donate blood due to me being underweight.

I was in shock with this senseless tragedy for weeks. I didn't want to celebrate our anniversary which is less than a week later...somehow it just seemed wrong to be happy when others are suffering so much loss. My endo friends convinced me to go out to dinner (which was what Jeff and I planned). We went to a restaurant near the airport and hearing the planes go overhead after they had been grounded for so long was weird. I heard a car backfire and jumped. I can't imagine those people living and working in NYC's reaction to things or the people working in government buildings in and around DC.

Today as you go about your day, think about the losses that others have had from this day and how much pain and sadness they are going through. For those of you with kids, hug them a little bit tighter today. Tell all of your family and friends that you love them.

I imagine that this is what people in Hawai'i went through with Pearl Harbor on December 7, 1941. The confusion and shock immediately following the tragedy and the loss of the life and ships might always be in their thoughts for years to come.

I will always remember. I will never forget.

Timeline of events on September 11th, 2001


September 11th Victims List

Infertility...Does One Ever Get "OVER" it??? NO!!!

Those of you who had children may not understand what I'm going through...hell some days I don't even understand what I'm going through. I tried actively for almost 18 months to get pregnant and couldn't. Jeff and I inactively tried for about 3 years and couldn't get pregnant. IVF was out due to a whole host of issues I had problems with it...cost of the procedure not covered by insurance, the God-like factor particularly of my Reproductive Endocrinologist who thinks that he is God, the factor of selectively weeding out "non viable candidates for implanting back into (my) body", and the drugs involved of doing IVF.

Events come up in a woman's life who has dealt with infertility that make them reflect on past events. The "What If" questions appear...What if I did this differently? What if I decided to do IVF? What if I decided to see the endo excision specialist sooner? What if, what if, what if...all questions that I don't have the answers to but as a woman with endo who has gone through this, all valid questions.

My reflections today are due to a dream that I had last night. I don't remember much of the dream however a woman was nearly 9 months pregnant delivering a baby and I was there to help her. Somehow I know this woman. I don't want to be there but I am there delivering a baby. I am crying in the dream...tears are rolling down my face. I don't want to be there, I want to run far away from that room but I'm stuck there helping out this woman.

I don't know what happens next since I'm awake dealing with a hot flash...life has a way of playing some cruel jokes sometimes. I have difficulty in getting back to sleep. I am awake for what seems like an eternity...what's the meaning of this dream? what purpose does it serve? Why am I having this dream now?? Is it because of the hyst?? Finally I drift back asleep while praying that I don't have the same dream, praying that I can stay asleep.

According to RESOLVE 5 million Americans suffer from infertility. I was one of them...and today I feel like one of them with the grieving that I've been doing over the loss of my uterus.

A Wonderful Support Organization for Endometriosis

Hi,

I wanted to tell you about a wonderful group of women who have been there for me through it all. They were there after my first surgery for endometriosis. They were there when I was trying to conceive and keeping it secret from our friends and family (sorry folks). They were there when we decided to adopt and supported me when we found out about our son. They were there when we found out about our daughters as well.

They have been there for me over the 8 years of being diagnosed with this disease answering all of my questions. They were there to answer my questions right before my last surgery and are there to answer my questions afterwards. I don't know where I'd be without this wonderful organization who have helped me out in so many ways over the years.

If you suffer from endometriosis or have loved ones that suffer from endometriosis (be it your daughter, your cousin, your mother, your sister, your best friend, your girlfriend or your wife), you owe it to yourself to check out The Endometriosis Research Center. Educate yourself and support this great organization.

Pain and Tears

I've got belly button pain still. There is a lump under the skin that is a tiny bit tender to the touch but due to the amount of work that Dr. Albee did, I'm not surprised at all. I did have alot of work done on July 21st.

God, has it only been that long???? It seems like an eternity ago right now...an eternity. Did I really have a 7 hour surgery??? Wow!!!!! Ask me on the days (or moments) when I'm feeling blue and I'll tell you that it was just yesterday that I had my uterus taken out of my body.

I still haven't read the operative report yet...that will take some time. I still cry over the loss of my organs. I mourn the loss of the children I couldn't conceive and carry within my own womb.

My current children are not and should not be used fill the void that I experienced by infertility because of having endo and adeno. I don't cry in front of them regarding the loss of my organs or anything else for that matter. It's an adult problem and an adult is handling it. I would never place my adult problems on my children and expect them to fill the role of the adult.

I know that the pain (both physical and emotional) will hopefully subside in time. All I need from you, my readers, right now is the understanding, the friendship, and support as I go through this.

Mack Truck has left but the Baby Elephant remains

I couldn't find the adult benadryl last night so I took the kids' liquid one...blech!!!! It was not sweet at all and that MUST be due to the two red dyes that they have in it!!!!! It was absolutely nasty!!! That alone is the reason why I'm half considering checking into having a compounding pharmacist doing up a batch for us (see if they would without the dyes and high fructose corn syrup and what the cost might be).

I'm still sick here today along with the kids who I practically had to sit on to get them to rest. I don't feel like the Mack truck is repeatedly running me over HOWEVER I do feel like there is a baby elephant at times sitting on my chest.

I did manage to do some laundry folding today which was already upstairs on our first level of our home, an accomplishment of itself since I had a good size pile to fold and put into the basket so that Jeff could take them upstairs to the 2nd floor when he got home tonight.

I didn't get to nap this afternoon due to the kids' nap times but that's alright since I'm okay today. Hopefully the kids will behave themselves tomorrow and rest up. I need the baby elephant to get off of my chest and go back home. Can you find it's Mommy for me please????

Sick...

I'm officially sick and have been since Sunday. I feel like a mack truck ran me over. My head is in a fog, my throat is so sore, and I have the chills. All I want to do is lay in bed with my pillows and blankets and sleep for hours.

The kids are sick too...runny noses abound in this household right now. However, I haven't been able to convince them yet that they shouldn't be running around. Hopefully this afternoon, they'll nap and then I can as well.

For those of you who have my phone number, it's going to be hit or miss if I pick up the phone if you do call. It'll depend on my throat.

Well I gotta go since my chills are increasing and I need to grab another blanket for the couch in our family room where I am.

Can I scream yet????

I'm in alot of pain at the moment. Jeff, who should be in bed due to an early haircut appointment, is up with me watching one of the Mr. Bean movies. The pain med isn't taking the edge off of the pain. I just want to cry but it'll hurt even more. I also want to scream but that will hurt too. I'm wondering if it will always be like this...please pray that it won't.

We are supposed to go to the park tomorrow since I arranged for the the kids to have a playdate through the local SAHMs group. I was planning to just sit in a chair and talk to the moms while Jeff played with the kids. We were planning on doing a picnic lunch as well there. If I can't make it, I'm going to feel like I've let everyone down again.

I'm just hoping that I can sleep and stay asleep throughout the night tonight. Right now I need to get the pain under control for that to even happen.

I'm still here...

I know that it has been awhile but I'm still here. It's been difficult at times just thinking and dealing with the issues that I have. The hot flashes, the night sweats, the emotional roller coaster ride I have been on...I'm not used to this. I never took lupron, zoladex, or synarel...nor will I ever.

I am hoping that it was worth it...that removing my uterus, cervix, left ovary, part of my vagina and half of my right ovary was worth it. I hope that I won't have any more pain. However I seem to have pain, sometimes it feels like many sewing needles on my left hand side like tonight...sometimes it feels just like a nagging ache that won't give up. I hope that it is just healing pain. Please pray that it is just healing pain.

Ouch the needles are here again. I need to go.

Emotional Wall Coming Down

I brokedown earlier on the phone with a friend of mine and cried a bit to her. She doesn’t have endo but suffered from premature ovarian failure while she was trying to conceive. She understood the hurt that I’m experiencing to an extent.

I told her that I haven't read my operative report yet. It's 9 pages long. It isn't the length of it that is overwhelming to me. It's the content of it...this is what was done to ME.

At times I have felt that I needed to remain strong...that I can not break down. Most of this comes from the fact that I was just out of surgery with post surgical pains. Some of it stems from the almost denial that I'm having...that I really didn't have a hyst.

Now I'm starting to feel the raw emotions that I kept bottled up for so long. It's starting out like a slow leaky faucet that needs to be fixed. I'm not sure when the crying will stop or if it will stop right now.

The term for what I had done I had to look up today. I had a LAVH-LSO with partial vaginectomy with right ovarian cystectomy. I lost 50% of my right ovary because of the cyst that I had. LAVH is Laparoscopically Assisted Vaginal Hysterectomy with Left Salpingo Oopherectomy (left ovary and left fallopian tube removed).

I don't know when I'm posting next right now. For my family and friends, I'm sorry if I'm crying to you over the phone. I just hope that you understand what I'm going through and can be patient with me.

Pictures from Atlanta

Hi,

I figured that since some of you asked for it, I post a few pictures that were taken in Atlanta. Sorry no sightseeing pictures!!!!





DH, myself and Dr. Albee





The 3 of us again





My surgery bear, Poohbah, who has been there with me for now all three of my surgeries. Somebody dressed him up in the surgeon's garb while I was having surgery in Atlanta.





A close up of Poohbah

Help Out a Great Endometriosis Organization...Yankee Candle Fundraiser

Hi,

The Endometriosis Research Center is doing another Yankee Candle Fundraiser Fall 2008. Please feel free to check the catalog out and order or better yet make a donation to ERC.

Don't just do it for me, do it for the 7 million girls and women in the US that have this damn f***ing disease. Do it for the 70 million worldwide who suffer the pains like I have suffered over the years.

Don't know the symptoms of endo? Make yourself aware of the Common Symptoms of Endometriosis.

Have a girlfriend, significant other, sister, mother, aunt, cousin, friend, in-law with endo? Support her and help find a cure by participating in the Yankee Candle fundraiser or donate to ERC!!! Please feel free to pass this along to everyone you know.

It's good to be home...

We made it home okay from Atlanta yesterday late afternoon. The kids were extremely happy to see us...but in particular to see me. They have been talking to me on and off all week as I could but to see and touch Mommy was something much different. My oldest daughter, Katie, ran up to me and refused to budge until she was lifted up on to the wheelchair that I was on. My son, Ryan, refused to leave my side while I was in the car until he had his hugs and even then he was worried that I was going away again. I had to reassure him that I was going home just like him. At home, I was treated to all of the cards the kids had colored for me that my parents put on the sliding glass door.

The two oldest kids are off to my brother's place for the week while my youngest, Bella, is at my parents' house for the week. My oldest "baby" is coming home today, our furry one called Maggie (who just happens to look like a shetland sheepdog to some).

My anti-anxiety med for flying worked pretty well but I couldn't take any prescription pain meds until it wore off. Last night was pretty bad with pain on my right side and again this morning. Jeff and I aren't too surprised with all of the work that was done on that side.

Break Down # 1

Earlier this evening I broke down and cried. It may seem silly to those of you without endometriosis...after all it's just organs. But for those of us with endo who have fought battles to keep our organs, the removal of them just hurts.

I have been thinking that if I had just done this or had just done that maybe I could have kept them. But maybe I would have just lost them sooner.

I know that I can rely on my family and friends to get me through. Please be patient with me if you haven't heard from me in awhile, if I need to cut phone calls to you short, or if I call you up just to cry over my losses.

I don't even want to hope yet that I won't have any more pain. I'm afraid to even hope.

I don't want to hear that it is for the best.

I don't want to hear that I will be better off without them.

I don't want to hear that endometriosis doesn't cause heartache.

I don't want to hear that since I've had my uterus and ovary removed that there is no way I could experience endo pain down the road.

I don't want to hear "Happy Hysterversary" coming from anyone's lips.

All I want is for you to be there when I need you to be, to be supportive of me and my decisions, and to understand that I may need time to myself to grieve my losses, lick my wounds, and gain my stamina to stand upright on my own two feet again.

I hope that you all will understand.

Post Operative Appointment and the Report

Jeff and I went back to CEC this morning to have the cath removed and to have a post op appointment with Dr. Sinervo. Dr. Sinervo went over the pictures with us and he asked if I had any questions/concerns. I did tell him that I had several questions. He took his time and answered each and every one of them. He checked out my incisions (which is something I haven't really done yet due to pain and Jeff's descriptions of them).

I have a 9 page operative report to read through and a huge pathology report to read through. I read through part of the operative report but couldn't finish it...I found myself getting too emotional about it. But I can tell you this...

I was diagnosis with Stage 4 endometriosis. Out of a possible 150 points, I had 109. This isn't something that you want to get a high score on. My uterus had 3 diagnoses...endometriosis, adenomyosis, and leiomyomata (fibroids). My cul-de-sac was totally obliterated. My left ovary was covered with adhesions, multiple cysts, and sites of old cysts. My right ovary had an ovarian cystectomy (removal of the ovarian cyst). There's more to the report but I haven't read it all yet.

I will say this though...after my first 2 surgeries, I was laid up for a few weeks. I needed help getting on and off the toilet. I needed help to get on and off the couch. I needed to be followed as I walked from one room into another.

Here I am 4 days post op of a major 7 hour surgery and I can walk around our hotel room, walk around the grounds of our hotel not once, not twice but three times this evening. My first line of pain defense is 3 advil (that's 600 mg folks) every 6 hours. If that doesn't work then I'm on a prescription pain med. This is so much different than after my first two surgeries. I'm happy that I researched my choices for endometriosis excision experts and so far I'm extremely happy with Dr. Albee and the rest of the crew at the CEC. They are wonderfully supportive there.

My Emotions

I have been asked how I'm doing emotionally. So here it goes...

I have to keep my emotions in major check. If I don't, I start crying, won't be able to stop, and it will hurt more. I know that once I start, I'll need lots of support and understanding and patience. I hope that you, my friends, my family, and my readers will understand.

Sleep

Today was a day for sleep. I'm so tired out. Jeff had to wake me for dinner. I had slept nearly 4 hours this afternoon and 1 1/2 hours this morning. Having surgery is tiring...

Pre-op Appointment then Surgery

Dr. Albee is very compassionate and understanding. After dealing with some doozies for doctors, I'm glad that I made the decision to come see him. He and his assistant Dr. Yeung are wonderful. The rest of the office staff is very friendly and compassionate. My appointment was at 7 am and it ended at 9:30. Jeff and I got a lift over from the CEC to Northside Hospital by Dr. Yeung.

I was so exhausted by the time I got up to the surgical waiting area that I was resting my head on Jeff's shoulder. Dr. Yeung was upstairs with us and went to check on when I could get that IV started. I was finally called back and after filling out paperwork, I got the IV put in.

I was given reglan and prevacid beforehand plus they gave me something in the IV to calm me down. I don't remember too much except Dr. Yeung was there with me and gave me my teddy bear who has gone through my 2 other surgeries with me. I held him tight as I went under.

Jeff got 6 phone calls from the OR...some times it was Dr. Albee, the other times it was a nurse telling him what was going on to keep him up to date on things. When surgery was finally over, Dr. Albee saw Jeff and gave him the pictures that he took. He said that I had described my pain very well and every where that I felt like I had endo there was endo present in those areas...every single place. When I learned about this from Jeff, I didn't think that I had described my pain adequately enough.

They used Adept to prevent adhesions. They found lesions on my diaphragm, uterus, cervix, under my liver, my appendix didn't look healthy, and more. I lost my uterus, my cervix, my appendix, my left ovary and 50-60% of my right ovary.

I spent the night Monday night and wasn't released from the hospital until 9:30 last night. The cab ride back was pretty bad.

Bowel Prep

I'm surviving the prep. Yuck is all I got to say to the phospho-soda. But I survived it. My poor abdomen is hurting so much though because of the severe bloating. It's been me, the TV, the heating pad and the bathroom. Jeff has been great in getting me jello, my prep, letting me sleep, and getting me apple juice.

By this time tomorrow morning, I will have seen Dr. Albee and by 11 have my surgery.

See you afterwards!!

We're here in Atlanta

Well I was unable to take my anti-anxiety med due to the interaction between it and the pain med that I had to take earlier. Because of that, my take off was horrible on me stress wise. Jeff still has his hands and his fingers still amazingly work the way that they are supposed to. Part way into the flight, I could take the anti-anxiety med so i did so. I was better with landing.

We went shopping at the airport to pick up some things that we couldn't get the last time we were in Atlanta in November after picking up our daughter in Korea. Then it was off to have a light dinner. We got our luggage and had made prior arrangements with Isaac to come pick us up. He has been wonderful and I can give you the number for any of you considering surgery at the CEC who are flying in.

Staybridge Perimeter Center West has been wonderful so far as well. They reserved two rooms for us...one is a 2 bedroom suite and the other was a 1 bedroom suite. We opted for the two bedroom and so far we are glad that we did. They are giving it to us at the same rate as the 1 bedroom suite. It has a full kitchen, a living room, wireless internet, 3 TVs, free laundry, library, free breakfast, free food Tuesday through Thursday evenings and more. We are 1.3 miles from Publix Grocery store which we are going to tomorrow morning for some last minute shopping.

Well I gotta go to get ready for bed.

I'm not sure if I'll be posting tomorrow due to having a bowel prep but I will try to have Jeff post for me on here after surgery.

My last post before Atlanta

While I haven't been sleeping easy this week, I know that pretty soon it'll be for the better. I'm nervous, yes, but hopeful that I'll get a good outcome from surgery. Hopeful that I'll have no more pain in my life. While endo doesn't have a cure, I can only hope for a pain free life for awhile and I know that this way, going to the doctors at the Center for Endometriosis Care, is the best way to get it.

The doctors at CEC are endometriosis specialists. They do excision surgery there pure and simple. They will spend the time to cut out all of the endo that they see. No longer will I be subjected to 2 hour surgeries since the doctors get paid the same from the insurance companies whether it's a 15 minute surgery or a 6 hour one. These docs at CEC have been known to do 13-hour surgeries before for the more complicated cases of endometriosis. I'm not sure how long my surgrery is going to be, what exactly will be done, when I'll be back at our hotel, or when I'll feel up to telling you all how I'm feeling. So much is dependent upon what Dr. Albee believes that is going on internally and what he finds when I have my surgery and my own recovery afterwards. I'm scared but I know that I'm in capable hands.

Well I gotta go for now to finish getting ready...do the last minute packing, go to the airport, hug and kiss each one of my children before we go to board our flight.

Say some prayers that this is it, that I'll be pain free after this. All of us endo sufferers deserve pain relief...all 7 million of us here in the US and 70 million of us worldwide.

Fate

Fate decided to play a cruel joke on me right now. I have my period and I was so nauseous this morning. I was finally able to eat something for breakfast after 11 am but I still had some nausea. At the moment, I am sitting here pretty miserable just wishing that I had the dreaded bowel prep done and over with. Unfortunately I have to wait a few more days. Just a few more days until DH and I fly to Atlanta. It'll seem really weird going back to that airport without travelling further to Seoul, South Korea like we did in November. I'm just praying for some relief of my symptoms.

T Minus One Week and Counting...

I'm nervous right now for a number of reasons:

(1) my fear of flying has been bothering me already...I have passed the airport I will fly in and out of 6 times now and I'm getting more nervous each time. I'm not a easy person to fly with and I'm thankful that DH is so understanding (or at least he pretends that he does).

(2) my fear of having surgery...I nearly threw up after my first one as I was being wheeled from the Recovery Room to my room and with the second one the nurses on duty forgot about the IV in my arm and I was pumped full of saline much longer than I should have been. I couldn't get my shoes on less than 24 hours after surgery when I tried to leave. I put the shoes on but couldn't lace them at all. Also with the last surgery they refused to give me any medications an hour before I left stronger than a couple of advil. I was screaming nearly the entire way car ride home (roughly 45 minutes).

(3) my fear of hospitals, needles...I was poked and prodded when I was little. The nurse at the hospital couldn't find my vein so I was repeatedly poked and stabbed. While I can't imagine anybody liking IV's and needles, I wished I didn't have to have one in me at all but I understand why it's necessary. The last two surgeries I had, I bruised pretty badly.

(4) although I know that I have made the right decision for doctors, I have this fear of them just because I haven't met them in person yet. I know that they can give me the best possible outcome for surgery, that they will take how ever long it does take to get all of the endometriosis out of me and give me the best possible pain relief that I so deserve.

(5) fear of flying back home again...mostly this time due to the pain after surgery but also for the flight itself.

So if you pray, say some prayers for me that I'll make it through the flight there to Atlanta, Georgia, the bowel prep, having the surgery, and the flight back home. If you don't pray, just send some good thoughts and vibes my way. I can use all the prayers and good thoughts and vibes you are willing to give.

Doctor Vent

I went to my insurance company's doctor for endometriosis in mid June. It took us an hour and a half to get there on mostly back roads...something that my body wasn't too happy with all of the bumps and stops and go's that I had to endure to get there. We arrived 15 minutes early for my afternoon appointment. We were seen right away. There were 2 other women in the waiting room that are very pregnant when I went back to the exam room.

All of the doctors appointments I have had, the nurse comes in and takes my pulse, my bp, my height, my weight, etc. Instead Dr. Know-It-All wants to talk to me first. He asked me about my pain. After the first two that I had discussed with him, instead of asking "okay what is your next pain?", he says "okay what's your next COMPLAINT?". Okay I'm fuming now...just fuming and I don't want to be there but I'm there to see if Dr. Know-It-All can refer me out of network. I also want to know why my insurance is so infactuated with this doctor...why lots of women have surgery repeatedly from him. I keep reminding myself that I need a referral, I need a referral, I need a referral...my mantra for the moment.

During this process with my husband sitting there with me, my husband tries to speak to help me out. This doctor just about told my husband to shut up and let me answer his questions. All my husband was doing was trying to rattle my memory. Dr. Know-It-All didn't care what my husband said. I don't think he cared for my husband to be there at all.

He also tells me that my pain isn't endometriosis at all because a part of my pain is outside of my period. He tells me that adhesions can't be causing my pain because adhesions don't cause pain at all. He tells me my office records, ultrasound reports and post operative reports which I sent to him are completely irrelevant to my case. He mentioned this several times. He tells me that I didn't have endometriosis surgery yet (I guess because I didn't have it with him, Dr. Know-It-All, yet). He also mentions to me that I'm trying to impress him with my pain which he mentions to me several times.

Next up was the pelvic exam so he leaves the room and I get undressed and wear the lovely paper robe with the stylish paper blanket over my legs. Now I just had a pelvic exam with my new obgyn, Dr. Lovely Lady, the day before...do you really think that I want this done??? Hell no!!!! However Dr. Know-It-All can't tell me anything until I have this done but of course it's up to me if I want this done. Okay do you think I'm driving 1 1/2 hours back home and drive back again to have the pelvic exam done another day?? He's crazy if he thinks I want to ride back there again between my pain and the way gas prices are these days...

He comes back into the room to do the pelvic exam. His nurse is with him. I tell him where it hurts. All he cares about is this pain similar to my bowel pain (complaint) or my urination pain (complaint). He cuts me off telling me that if he stands still long enough he could list about 10-15 pains that he is currently experiencing. So I'm only to respond if it's like my bowel complaint or my urination complaint.

While I'm lying on the examination table and with DH holding my hand, he asks me if I work out since I am so thin. I tell him "no I have a high metabolism" but I am grossed out completely by his question. I want to run far away and never look back. Maybe I'm looking too far into his questioning but later after the appointment DH and I talk about this comment and he was just as upset and grossed out as I was. During the exam, I'm backing away from him on the exam table due to the pain. He tells me that a pelvic exam doesn't cause pain repeatedly. I just want to scream back at him "well stupid Dr. Know-It-All it does hurt".

When he is finally done, I'm practically in tears even though I'm on a pain med. After he leaves, I get dressed and he comes back in. Now he tells me that well you have endometriosis (oh you think????? stupid Dr. Know-It-All!!!!!!!). He thinks he's done but I tell him that I have questions. He retorts back that he has patients in the waiting room. Ask me if I care at the moment...

I ask my questions anyway. Questions like I want a copy of your CV (it's a curriculum vitae or doctor's resume for those of you who don't know), how he does he surgeries, does he use lupron, zoladex, synarel, etc. and more. His answers leave a bad taste in my mouth: go look up my CV at AAGL's website since they have it (answer from AAGL No they don't...nor would they ever do that), he does laser excision (his surgeries last 1-2 hours for mild to moderate amounts of endo and 3 hours for extensive severe (stage 4) endo--he does upwards of 3 surgeries in one day), yes he uses lupron-no he doesn't yes he does no he doesn't yes he does...(so which is it doc do you or don't you use lupron????), and other nauseating answers.

For those of you who don't know what lupron is, it's a drug that was originally designed to treat prostate cancer. Somehow doctors thought that it would be good to treat endometriosis as well and it causes women who take it to have menopausal-like symptoms (no periods (well at least this is what they tell you), night sweats, hot flashes, decreased libido, vaginal dryness, and others like bone loss). I know of women who have had their dental fillings fall out because of this drug. I have chatted with a woman who during the dead of winter ran out of her home during the middle of the night naked due to the hot flash she was experiencing. I know friends of mine who have tried it who turned into the she-devil from hell. So why would I want to take this drug??????? It is my belief that drugs like Lupron are used post op when the doctor doesn't get ALL of the endo out or doesn't care to. I know that for some women this drug has done something for them, however given my track record of reactions to various OTC medications, I would rather not tempt the fates with something like lupron.

I have never been on lupron or any of the drugs in the same category as it nor will I go on them in the future. I'm too scared of the side effects of the meds.

Okay since this appointment I have contacted his office twice to get his CV. I called 2 days following the day of the appointment to request the CV again. I'm treated to a woman who doesn't really know what the heck I'm talking about and tells me to call back the following Tuesday. On Tuesday morning, I called again. This time the receptionist talked to me and then passed me on to a nurse.

The nurse wanted to know what I needed to know. I told her anything that would be on the CV. She asked like what. So I told her anything on the CV for Dr. Know-It-All (his education information, his journal articles, where he did his residency at, everything that would be on his CV). I am told to check with AAGL to which I respond I already have and this is what I was told. The nurse then tells me the answers to my "questions" (she readily has this information on hand...she is not reading it but has this stuff memorized. She tells me that THE Medical Society will have it (meaning the CV). I am getting absolutely nowhere with this doctor or his freaking staff.

ANY GOOD DOCTOR WILL GIVE YOU HIS/HER CV UPON YOUR REQUEST!!!!

So I am left with researching Dr. Know-It-All myself...I contacted the state's medical society via email who transferred my request to the county's department of health. The woman who works in the same the county at their department of health where Dr. Know-It-All works is a patient of his, had surgery done by him and feels wonderful. So does Dr. Know-It-All pay her as well as his office staff??? I didn't bother asking her for the CV that this doctor should be willing to give me outright upon my first request.

His bedside manners were highly lacking, along with the rest of his manners in general. I was taught that you don't cut off the person that is speaking to you by my parents and by my schools that I have graduated from. I'm not sure about this doctor.

Oh I forgot to mention, when I asked him in office about who he trained under for excision of endometriosis, his response was the following:

I trained myself

How scary is that??? I'm petrified to have this doctor do my surgery.

Wonderful (note the major hint of sacrasm here) another quack for a doctor who:

(a) doesn't listen at all to their patient or the patient's partner
(b) thinks that they are God
(c) refuses to honor a patient's request for more information (I'm sorry I'm not blindly going into surgery with a doctor I don't know without gaining more information from others and from that doctor)
(d) who hides behind the medical societies that he is a member of (and ones that he isn't)
(e) who can't answer simple questions on whether or not he will prescribe lupron to me
(f) who can't deal with endo on the bowel so that I might have to undergo 2 surgeries where the other endo experts would be able to do just one

Sorry Dr. Know-It-All you are like the other "docs" that I have seen who didn't want to listen to me so I'm having surgery done by somebody else who:

(a) will take their time with my surgery to get all of the endo out
(b) will care more about the patient than the money involved
(c) will listen to me the patient, their employer, than the all mighty $
(d) doesn't hide behind the membership organizations and his/her role with them
(e) honors the patient's request(s)
(f) doesn't do more harm
(g) doesn't have their patients undergo more than 1 surgery for the same item

My History With Endometriosis

I got my period the last day of 8th grade. I was 14 years old. I came off the school bus noticing that I had abdominal cramping and by the time I got to my home, I needed to change my outfit. I went into the house and told my brother to take out the dogs. I needed a change of clothes and to go into my closet that had my box for when I "grew up and became a woman". In it contained the pads that I needed. I went down to the bathroom and sure enough it was my period. I can tell you what pants I was wearing too that day...white ones that I had picked out recently at JCPenney. After doing all of this, I called my mom at work to let her know.

I remember her telling her office staff that I got my period. She worked at a small credit union office with two other older women at the time (one was my Great Aunt) and two older Italian men who came in part time. I was embarrassed because I didn't know who was there at the office. I didn't bother calling my dad up at his work...although I couldn't imagine him doing the same thing my mom did I was embarrassed enough already. I had cramping pain with my periods.

In talking with one of my best friends, I learned that she was out during "that time of the month" because of the pain. I wished that I could have stayed home many months during my period. I hurt too much...I had difficulty focusing in class, difficulty in going from class to class, difficulty in carrying my books, and more. My best pain medication that I could take extra strength tylenol until I got prescribed prescription motrin for a knee problem I was having. Unfortunately the motrin had other problems associated with it: it ate away at my stomach lining even when I ate it with a meal and it caused me to have heavier periods. Not the thing that I wanted...to be going through an overnight pad in less than an hour!!! I ended up taking myself off of the motrin because of the side effects.

I was told by the pediatrician that my periods were "normal". So I grew up believing what my doctors had told me...I mean, why would I even think about second guessing my doctors. Afterall, they have had medical training and all....right????

In college, my 2nd roommate in my Junior year was on birth control pills. Her periods were at most 3 days on the pill. I was absolutely envious of her. I had my for 7 days and they were heavy. I attended classes because I had to due to attendance but I wished that I was in my dorm room curled up into a ball due to the pain. I'm surprised now looking back that I was functioning in high school and in college. Somehow I managed to earn my college degree in 4 years and I had a boyfriend from a college 15 minutes away from mine and that relationship was serious.

Less than a month after I graduated, my boyfriend proposed to me. It was Father's Day of 1993. He called my father up for my hand in marriage but my dad was at his weekend Air National Guard duty. He called up my mother and she gave him my dad's number and he finally got permission for my hand in marriage. I told my dad that I was going out to eat at a restaurant that night with my fiancee to celebrate and after a bit my dad said fine. That fiancee is my dear husband (DH) Jeff. We got married 4 months after he graduated from college in September of 1994.

At that time, we had no idea that I have something called endometriosis or the infertility it would cause. Towards the end of 1995, I started having pain with sex. I could have it but I ached for a day afterwards. By 1996, I think I had just about stopped having it altogether. It hurt so much. I complained to everyone involved with my care...the receptionists at my then obgyn's office, the nurses, and the obgyn, Dr. Who-Didn't-Care...I wanted this pain known and documented. In 1998, my husband and I moved from NJ to where we are in Upstate NY.

I found an obgyn that I thought I could trust in Upstate NY, Dr. I'm-the-Doctor-and-You're-the-Patient. I mentioned to her about the pain with periods and painful sex. Finally in late 1998, she told me that she thought that I probably had endometriosis but gave me no information about this thing. I drove 45 minutes home trying to think of the spelling of that word. I thought that all I had to do was take a regimen of pills (like maybe antibiotic or something) or have a small surgical procedure and I would be cured. Once I got home and after I took out the dog and got the mail, I went online and tried the spelling that I thought endometriosis was.

While I was wrong with the spelling that I chose, I did managed to find the http://www.endocenter.org/ and read their site. I brokedown and cried. If I did have this disease, I thought that I would be one who would experience the infertility so I started researching adoption back then on and off. Jeff didn't believe me at the time that I had something such as endometriosis. He didn't want to believe that his bride would have something like this...an incurable disease.

After having an appointment scheduled with her to have a lupron shot administered, I read up on lupron and decided "no way is this for me". I called the office back up to tell them to change the appointment to a consultation with my obgyn instead.

In the meantime, my mother-in-law mailed me a copy of a newspaper article about a woman with endometriosis who was on lupron and what it did to her that the doctors didn't tell her about. I also went online and printed off sutff from the manufacturer of lupron's own website of side effects that my obgyn didn't even tell me. And the information that I found that the only way to diagnose endometriosis was through surgery not medications.

Jeff took time off of work to go to the consultation with me. Dr. I'm-the-Doctor-and-You're-the-Patient wasn't pleased that I cancelled the lupron shot appointment. She wasn't happy that I was standing up for the first time in my life and telling her what I wanted and needed. She told me that she goes to the conferences on endometriosis and that she KNOWS what is going on with that disease, etc. I showed her the newspaper article and the printout from the Lupron's manufacturer about the side effects to it. She didn't want to read it and didn't care. She goes to the conferences on endo, I can't believe anything posted to the internet, yada yada yada.

She doesn't understand why I'm refusing Lupron since it cures endometriosis. Then she tells me that pregnancy will cure me of endometriosis, I have documentation stating the opposite. Of course I also tell her that I am completely unable to have sex at this point and with everything else going on, how can I try to have it??? She then tells me that I need to have a ultrasound (u/s) done along with a few other things to check for STDs since she thinks I have some.

I play her game...I get the ultrasound done. I had to go into the office to have it reviewed by the doctor. So I schedule an appointment for this and have it with a PA (Physician's Assistant). The PA tells me that the u/s shows lots of free fluid in the abdomen. All of the tests come back negative for STDs. My PAP smear though is abnormal since they didn't have enough cells to read it properly.

She reads my chart and notices that the obgyn is having problems with me. The PA then asks me if I am happy with my current obgyn. I'm taken aback and said no. She writes down a name and a number and tells me to call it and get an appointment with her.

I left the office in shock but willing to try another obgyn. I get home and call that office up to get an appointment for a repeat PAP with that particular obgyn. I get an appointment for nearly mid November 1999.

When I go to that appointment and finally get called back to the examination room, I am welcomed warmly by the nurse. She brings me back to the room, takes my pulse, my bp, and such and asks me why I'm there. I tell her and tell her about my pain with pelvic exams. She leaves and Dr. Most Beautiful comes in.

Dr. Most Beautiful tells me her name and shakes my hand. We chat for a moment and then she asks me a question that I have never been asked yet...do you have anybody in the waiting room for you? I am shocked. No doctor to date has asked me this. I tell her no and she says wait here a minute.

She comes back in with her nurse that I just met and her nurse repeats her name to me and holds my hand while I lay on the exam table. During the pelvic, I'm screaming out in pain trying to leap up onto the ceiling...anywhere to avoid the pain. Dr. Most Beautiful apologizes profusely while doing the exam. The nurse continues to hold my hand as I grip down on it completely.

When Dr. Most Beautiful finishes up, she apologizes more. I let go of her nurse's hand and she leaves the room. Dr. Most Beautiful gives me the box of tissues and she waits for me to calm down and says that she agrees with Dr. I'm-the-Doctor-and-You're-the-Patient that I have endometriosis. She ventures a bet that it's all on my left side as she felt some nodularity on that side.

She mentions that she would like to do surgery. I agree. The next month I have my pre-operative appointment with her. This time DH comes with me. She tells him everything that she already told me in my first appointment with her.

On January 28th, 2000 I had my first major surgery for endometriosis. It was done laparoscopically. When I came out of surgery in the recovery room I was okay until they started wheeling me to my room. I got so nauseous. They had to administer more oxygen. They tried again and slowly wheeled to the room. DH told me about that I have stage 3 endo...all on my left side just like Dr. Most Beautiful had said.

Dr. Most Beautiful gave me back my life. I thought I was going crazy since no doctor was willing to treat me or listen to my concerns.

In February 2001, I went off birth control pills to try to conceive (ttc). DH and I ttc'd until June 2002 when I went back to Dr. Most Beautiful. She ran a battery of tests and then referred me over to the reproductive endocrinologist, Dr. I-Know-that-I'm-Good. I went in for my second surgery on August 30th, 2002. I'm diagnosed now with Stage 4 endo...it's all over the place. Dr. I-Know-that-I'm-Good leaves my left ovary glued down to the sidewall. I learned in post-op appointment that both of my tubes are blocked. But my Uplift procedure worked...well sort of. It's more at a 90 degree angle.

I had left side pain that just ached each cycle. I was upset that I went through a surgery that didn't really work. I felt horrible especially since Dr. I-Know-that-I'm-Good told me that he gets paid the same from the insurance company whether it's a 15 minute surgery or a 6 hour one. I lucked out and had a 2 hour surgery. I decided due to the results of surgery not to pursue any more fertility treatments. My attention was once again focused on adoption to start our family.

I have been having this left sided pain each and every cycle which has been getting worse and more daily. My symptoms now are pain with urination sometimes but not always and I'm not diagnosed with UTI, pain with ovulation, and more. So I'm heading to an endometriosis excision specialist, Dr. Albee and Dr. Sinervo in Atlanta, Georgia this time to have surgery.