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.
Thursday, July 31, 2008
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
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
Wednesday, July 30, 2008
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.
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.
Monday, July 28, 2008
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.
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.
Saturday, July 26, 2008
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.
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.
Friday, July 25, 2008
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.
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.
Thursday, July 24, 2008
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.
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...
Wednesday, July 23, 2008
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.
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.
Sunday, July 20, 2008
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!!
By this time tomorrow morning, I will have seen Dr. Albee and by 11 have my surgery.
See you afterwards!!
Saturday, July 19, 2008
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.
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.
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.
Thursday, July 17, 2008
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.
Monday, July 14, 2008
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.
(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.
Thursday, July 10, 2008
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
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
Tuesday, July 1, 2008
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.
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.
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