Ahh, well. What a day it was. Joe and I just got home from Orlando. We left this morning at 9:15ish for a 1:00 doctors appointment. What a doctors appointment it was.
First off, let me just say that everything this doctor is, I've been looking for since last October. Everything he said was right on, he agreed with my thoughts on Lupron (which, btw, shocked me to no end), and explained to me in "people terms" why I was feeling what I was feeling. I'll break it down:
A.) Recurring fevers - there are spots on Endometriosis on my cervix, left ovary, etc. During the week or so before my period, these spots are becoming inflamed. Because of the inflammation, my body sends out white blood cells to attack the areas. This makes my body think there is an infection, thus lowering my immune system. If there is a person around me with even the tiniest of sniffles, I'll get that illness tenfold. And there we have the recurring fevers of 102*+. He thinks that removal of the adhesions will keep fevers ad other illnesses at bay. Let's keep our fingers crossed.
2.) Uterus - I've been told since I'm 16 that my uterus is titled, aka retroverted uterus. This means my uterus is tilted backwards. Anything can cause this (from child birth to endo), and only a surgical procedure will fix it. Its called an UPLIFT Procedure (sounds like some fun type of plastic surgery, huh?!). When you're lying down on your back, your uterus should lie flat as well. Your cervix should be face outward toward your vagina. In my case, my cervix is tilted upward toward my belly button. The UPLIFT Procedure will put everything back in it's rightful place by repositioning the uterus and stitching it to the inside of the abdomen to keep it in place.
3.) Endometriosis - As I wrote before, I do have endo again. Dr M did not feel much, but of course he wants to take a further look with another lap. He feels my bowels are in danger due to the location of the nodules that he felt. On July 7th I have an appointment with one of the best bowel surgeons in the US. If he feels the need to be present during the surgery because of the location of the endo, he'll join Dr M. Let's hope he doesn't. Oh top of all of this, Dr M feels I would benefit from a presacral plexus (PSN). Near the back of your uterus and spine there is a network of nerves. A PSN is a procedure that deadens the nerves to the uterus causing less pain during periods and intercourse. While the cure rate seems to be impressive, http://cme.medscape.com/viewarticle/459434, I feel this procedure might be a little outdated. And, to be honest, a PSN sounds downright scary. Joe is concerned with the deadening of other nerves to the rest of my body, which is a legit fear. I'm not sold on this yet, but I'm keeping my mind open to anything the could help in the long run.
Overall, I think today was extremely successful. The shitty thing is Joe and I have to skip Italy this August. I'm really sad about this, but as Joe said, Italy isn't going anywhere. We both left Dr M's office full of confidence and positivity. We both feel August will be the start of a new healthy life for me :)
Thanks for reading this book! LOL.
Wednesday, June 17, 2009
Monday, June 15, 2009
Oprah Show
One of the girls on Endo Resolve found this site:
http://www.thepetitionsite.com/2/oprah-please-do-a-show-on-endometriosis
Please sign to help us raise awareness!
http://www.thepetitionsite.com/2/oprah-please-do-a-show-on-endometriosis
Please sign to help us raise awareness!
Monday, June 1, 2009
You know you have Endo when...
Collected from Endo Resolve!
1. You have been complaining of abnormal periods since the age of 15 and all the doctors say is 'get pregnant it'll clear up'
2. A friend tells you ' you can't have endo because you'd be in much worse pain that that'
3. You look permanently pregnant
4. You end up passing out with pain because you can't take painkillers at work
5. When you do eventually get a doctor to do an laparascopy, he finally believes you- and then tells you it's Stage 4 and you'll never get pregnant or carry to term. And then he tells you at age 27 (in my personal case, he told me this at 23), it's better to have a hysterectomy
6. Your purse sounds like a shaker because you carry so many bottles of pain medication ....
7. Your friends can always count on you for a fix when they have a bad headache.....
8. You think maternity clothes look comfortable....
9. Your co-workers have caught you sitting at your desk with the button on your pants undone....
10. You practice breathing exercises while driving ( similar to lamaze)....
11. Your boss has caught you with your head on your desk ... and you told him to "Get Lost" ....
12. You wear pajamas at all times of the day.
13. Tylenol doesn't work.
14. All of your other problems pale in comparison to the pain.
15. Everyone's problems pale in comparison to the pain.
16. You have three mood settings: happy, sad and angry.
17. You stole your grandma's muumuus, so you could wear them. (true story)
18. You laugh when your doctor tells you to take pain meds before the pain begins. Seriously I should just make them into a candy necklace.
19. You start getting pissed at the pregnant patients in the waiting room at the OB/GYN.
20. You tell your doctor you have been bleeding constantly from the Provera and they say, "yeah spotting can happen."
21. When you don't do anything fun on a "good" day, and you know you will feel horrible on the day you have plans
22. You start debating treatments from the potential side effects.
23. You buy all of your underwear, pants, and shorts two sizes two big and make sure they don't have clunky waistbands
24. You can function on pain levels that most people can't imagine
25. You laugh when someone tells you to take ibuprofen or midol because M&M's are just as effective
26. You rent an apartment or buy a house specifically because it has a bathtub rather than a shower
27. If one more person tells you that "It's just a little bit of cramping" you're going to cry...right after you disembowel them
28. You're on medications that were actually developed for cancer patients and that doesn't phase you
29. As your fertility is questioned, you suddenly want to have kids more than ever.
30. You are familiar with the "Recovery Position" because that is how you sleep every night
31. None of your clothes fit because your weight yo-yos so much from the drugs, bloating, and from being to sick to eat
32. You think that the medical profession is a joke after the hell they've put you through
33. Your local pharmacist greets you by name when you walk in the door
34. Your doctor no longer asks "how are you?" just "what shall we try this time"
35. You are more comfortable talking about bowel issues than you ever thought you would be
36. Your severe pelvic pain is diagnosed as PID... But you're still a virgin.
37. You have no sympathy for women approaching menopause. You did all that after your last op at 23 and had 5 years worth of menopause crammed into 6 months. And you have never looked the same.
38. When you wish your husband's penis was smaller...
39. When your medicine cabinet looks like a pharmacy
40. You carry pain killers with you EVERYWHERE
41. You laugh when people tell you they have advil if you need it
42. You can't stop buying sweatpants
43. Your coworkers can count on you for drugs, tens units and heating pads
44. You dont dare take all of your vacation days at once
45. You trade getting fat for trying to get rid of your pain
46. You wonder whats going on when your not curled in fetal position on the floor and think maybe you should see a doctor
47. You've been through more doctors than you have fingers
48. Having surgery is no longer a big deal, you're a pro
49. You've researched getting a lower body transplant
50. You want to smack someone when they say, "ugh, I have the worse cramps ever."
1. You have been complaining of abnormal periods since the age of 15 and all the doctors say is 'get pregnant it'll clear up'
2. A friend tells you ' you can't have endo because you'd be in much worse pain that that'
3. You look permanently pregnant
4. You end up passing out with pain because you can't take painkillers at work
5. When you do eventually get a doctor to do an laparascopy, he finally believes you- and then tells you it's Stage 4 and you'll never get pregnant or carry to term. And then he tells you at age 27 (in my personal case, he told me this at 23), it's better to have a hysterectomy
6. Your purse sounds like a shaker because you carry so many bottles of pain medication ....
7. Your friends can always count on you for a fix when they have a bad headache.....
8. You think maternity clothes look comfortable....
9. Your co-workers have caught you sitting at your desk with the button on your pants undone....
10. You practice breathing exercises while driving ( similar to lamaze)....
11. Your boss has caught you with your head on your desk ... and you told him to "Get Lost" ....
12. You wear pajamas at all times of the day.
13. Tylenol doesn't work.
14. All of your other problems pale in comparison to the pain.
15. Everyone's problems pale in comparison to the pain.
16. You have three mood settings: happy, sad and angry.
17. You stole your grandma's muumuus, so you could wear them. (true story)
18. You laugh when your doctor tells you to take pain meds before the pain begins. Seriously I should just make them into a candy necklace.
19. You start getting pissed at the pregnant patients in the waiting room at the OB/GYN.
20. You tell your doctor you have been bleeding constantly from the Provera and they say, "yeah spotting can happen."
21. When you don't do anything fun on a "good" day, and you know you will feel horrible on the day you have plans
22. You start debating treatments from the potential side effects.
23. You buy all of your underwear, pants, and shorts two sizes two big and make sure they don't have clunky waistbands
24. You can function on pain levels that most people can't imagine
25. You laugh when someone tells you to take ibuprofen or midol because M&M's are just as effective
26. You rent an apartment or buy a house specifically because it has a bathtub rather than a shower
27. If one more person tells you that "It's just a little bit of cramping" you're going to cry...right after you disembowel them
28. You're on medications that were actually developed for cancer patients and that doesn't phase you
29. As your fertility is questioned, you suddenly want to have kids more than ever.
30. You are familiar with the "Recovery Position" because that is how you sleep every night
31. None of your clothes fit because your weight yo-yos so much from the drugs, bloating, and from being to sick to eat
32. You think that the medical profession is a joke after the hell they've put you through
33. Your local pharmacist greets you by name when you walk in the door
34. Your doctor no longer asks "how are you?" just "what shall we try this time"
35. You are more comfortable talking about bowel issues than you ever thought you would be
36. Your severe pelvic pain is diagnosed as PID... But you're still a virgin.
37. You have no sympathy for women approaching menopause. You did all that after your last op at 23 and had 5 years worth of menopause crammed into 6 months. And you have never looked the same.
38. When you wish your husband's penis was smaller...
39. When your medicine cabinet looks like a pharmacy
40. You carry pain killers with you EVERYWHERE
41. You laugh when people tell you they have advil if you need it
42. You can't stop buying sweatpants
43. Your coworkers can count on you for drugs, tens units and heating pads
44. You dont dare take all of your vacation days at once
45. You trade getting fat for trying to get rid of your pain
46. You wonder whats going on when your not curled in fetal position on the floor and think maybe you should see a doctor
47. You've been through more doctors than you have fingers
48. Having surgery is no longer a big deal, you're a pro
49. You've researched getting a lower body transplant
50. You want to smack someone when they say, "ugh, I have the worse cramps ever."
Tuesday, May 26, 2009
Long time no post.
Ahh. Back from vacation, into my new work schedule, and getting ready to hit the Keys on Thursday. Let's hope the weather holds up.
My new vitamin/holistic treatments have been going awesome. In the first week I lost 6lbs by just changing my diet to a insulin resistant form, though I promptly gained the weight back in NYC (Hey, there was a Mr. Softee on every corner and Magnolia was a block from our hotel. What was a girl to do?). Joe and I started back at the gym this evening, not only did it feel great, but I had more than enough energy to get through 40 minutes on the elliptical! That might not seem like a feat to others, but to me, it's a hugeee step in the right direction.
Since I've started this blog, I've discovered something. There are a lot of women with Endo. More than I really probably ever imagined. I also noticed that they are all looking for someone to understand what they are going through. Far and few between are there people who truly get what Endometriosis is, and unless they are someone who suffers or personally know someone who suffers, they simply have no idea. We Endo girls are a tight-knit group, who in the face of so many things, conqur every day life with a smile and grace. When we find someone else who has this disease we run to them in a way that can only be described as hopeful and optimistic. We are thankful to find another person who "gets it."
So, to those women out there who "get it," this is for you. :D
P.s. 6 months after Joe proposed, I finally finally finally booked a photog for our E-Pics. Yay!
My new vitamin/holistic treatments have been going awesome. In the first week I lost 6lbs by just changing my diet to a insulin resistant form, though I promptly gained the weight back in NYC (Hey, there was a Mr. Softee on every corner and Magnolia was a block from our hotel. What was a girl to do?). Joe and I started back at the gym this evening, not only did it feel great, but I had more than enough energy to get through 40 minutes on the elliptical! That might not seem like a feat to others, but to me, it's a hugeee step in the right direction.
Since I've started this blog, I've discovered something. There are a lot of women with Endo. More than I really probably ever imagined. I also noticed that they are all looking for someone to understand what they are going through. Far and few between are there people who truly get what Endometriosis is, and unless they are someone who suffers or personally know someone who suffers, they simply have no idea. We Endo girls are a tight-knit group, who in the face of so many things, conqur every day life with a smile and grace. When we find someone else who has this disease we run to them in a way that can only be described as hopeful and optimistic. We are thankful to find another person who "gets it."
So, to those women out there who "get it," this is for you. :D
P.s. 6 months after Joe proposed, I finally finally finally booked a photog for our E-Pics. Yay!
Saturday, May 16, 2009
NYC
Off to NYC tomorrow for a bit of a vacation! Be back on the 21st with pictures :) And a full tummy! Maybe I'll even make an impromptu visit to the Endo Foundation? Hmmmmm....
Tuesday, May 12, 2009
Monday, May 11, 2009
Sleepy head
Despite massive (ok, maybe not massive...) amounts of B-12 and CoQ10... I'm exhausted.
What is that all about?
Dear exhaustion, go away. Thanks. - Me
Busy. Busy. Busy.
My new vitamin/supplement regiment has been somewhat hard to organize and get used to. I can't seem to remember which pills I need to take and when exactly I need to take them. I've gone to writing every pill down on a piece of paper every morning and gradually marking the pills off as I take them. It's been fairly successful the past two days, but since I'm on vacation and not really in a regular schedule, I've noticed that I'm sort of all over the place with everything.
It was a busy weekend: I turned 25 yesterday, on Mother's Day none-the-less. Not sure when that all happened, but I can rent a car now. Good stuff. Olivia, my 8 year old niece, also received her very first Holy Communion. She looked beautiful. I'll post pictures soon.
I've also been pain free for about a week or so now. I did not notice any ovulation pain. AF was due yesterday, but the new vitamins might have delayed her visit. Who knows? I guess time will tell :P
Hope everyone has a happy Monday!!
Thursday, May 7, 2009
Holy vitamins
Here is my new supplement schedule:
Morning:
PRX - 3 when waking.
Adrenio-Lyph-160 - 2 before breakfast.
Iodo-Lite - 2 with breakfast.
Afternoon:
Glucarate - 2 per day.
DIMension 3 - 3 twice daily.
Theanine 100 - 2 three times daily.
Prevagen - 1 per day.
Iodo-Lite - 2 with lunch.
Evening:
Fishmax - 2 with dinner.
Magnesium Citrate - three at bedtime.
Iodo-Lite - 2 with dinner.
My bathroom counter looks like the vitamin aisle at Whole Foods.
Oh, and I munch on CoQ10 and B-12 tablets all day. At least they're yummy.
Naturopathic doctors appointment.
I've seen more doctors than I can count on my fingers and toes. Doctors who seem to know what they are talking about, and doctors who obviously cheated on their MCATs. I spent a few years with a great one in Orlando, Dr. Ashley Hill. He is an Endo specialist to some degree and offered me a great deal of pain relief. But, like other doctors, he could only take me so far. The past couple of months have been rather painful. Periods are progressively getting worse, I'm exhausted after 10 hours of sleep, and as hard as I try, I cannot seem to lose weight.
Conventional doctors are often very set in their ways. They have tunnel vision. I've walked into doctors offices doubled over in pain begging for another laparoscopy because I KNOW there is something wrong, and these "drs" send me off with more painkiller than I ever need. (It's no wonder why or how this country has such a high dependency on drugs. We give them out like candy.) So, I decided recently to take an unconventional route of medical treatment and go natural.
Dr. Marlene Lepore is a Naturopathic Doctor here in South Florida. She uses Bio Meridian as a way to "diagnose." Now, I write "diagnose" for a reason, as Dr. Lepore isn't really "diagnosing" anything. Rather, is she finding the reason behind a problem. Bio Meridian uses your acupuncture medridian system to discover any imbalance in each organ. For instance, Dr Lepore used a probe (no needles, I promise!) on the ends of my fingers and toes, as well as on my hand to find readings on what organs are stressed, or what imbalances/impurities I have in my body. Let me just say this, for about three years now I've been in and out of doctors offices asking if my thyroid is normal. Thyroid issues run in my family and I have every telltale sign that it's off. Ok, sometimes that doesn't necessarily mean anything, but I've have my blood taken over four times for my thyroid and it always came up in the "normal" range. Dr. Lepore tested my thyroid with Bio Meridian and low-and-behold my thyroid was totally out of whack! She also discovered I'm severally hypoglycemic and that my adrenal glandes are very inflammed from stress. Sitting there and talking to her gave me more clarity than I have ever had. Lightblubs started to go off, "Oh! So that's why this is happening," and, "Ah! That's why I feel like that." She finally did diagnose me with PCOS, as my FSH was disgustingly low. I knew I wasn't ovulation! God, I love this woman, and I love her more for telling me she can fix it!
After about an hour of all this fun self discovering stuff, Dr. Lepore gave me a bag load of natural supplements to take home. See, this is the difference... natural doctors find out exactly where the problem in stemming from and treat it directly. Conventional doctors diagnose, write a 'script that simply masks the problem and send you on your way - for the most part, anyhow.
I'm excited to start my new treatments. I have a follow-up appointment in four weeks, which will allow Dr. Lepore to see which supplements I need to continue taking and which ones I can stop. This is the first time that I left a doctors appointment feeling better then when I walked in! :D
Conventional doctors are often very set in their ways. They have tunnel vision. I've walked into doctors offices doubled over in pain begging for another laparoscopy because I KNOW there is something wrong, and these "drs" send me off with more painkiller than I ever need. (It's no wonder why or how this country has such a high dependency on drugs. We give them out like candy.) So, I decided recently to take an unconventional route of medical treatment and go natural.
Dr. Marlene Lepore is a Naturopathic Doctor here in South Florida. She uses Bio Meridian as a way to "diagnose." Now, I write "diagnose" for a reason, as Dr. Lepore isn't really "diagnosing" anything. Rather, is she finding the reason behind a problem. Bio Meridian uses your acupuncture medridian system to discover any imbalance in each organ. For instance, Dr Lepore used a probe (no needles, I promise!) on the ends of my fingers and toes, as well as on my hand to find readings on what organs are stressed, or what imbalances/impurities I have in my body. Let me just say this, for about three years now I've been in and out of doctors offices asking if my thyroid is normal. Thyroid issues run in my family and I have every telltale sign that it's off. Ok, sometimes that doesn't necessarily mean anything, but I've have my blood taken over four times for my thyroid and it always came up in the "normal" range. Dr. Lepore tested my thyroid with Bio Meridian and low-and-behold my thyroid was totally out of whack! She also discovered I'm severally hypoglycemic and that my adrenal glandes are very inflammed from stress. Sitting there and talking to her gave me more clarity than I have ever had. Lightblubs started to go off, "Oh! So that's why this is happening," and, "Ah! That's why I feel like that." She finally did diagnose me with PCOS, as my FSH was disgustingly low. I knew I wasn't ovulation! God, I love this woman, and I love her more for telling me she can fix it!
After about an hour of all this fun self discovering stuff, Dr. Lepore gave me a bag load of natural supplements to take home. See, this is the difference... natural doctors find out exactly where the problem in stemming from and treat it directly. Conventional doctors diagnose, write a 'script that simply masks the problem and send you on your way - for the most part, anyhow.
I'm excited to start my new treatments. I have a follow-up appointment in four weeks, which will allow Dr. Lepore to see which supplements I need to continue taking and which ones I can stop. This is the first time that I left a doctors appointment feeling better then when I walked in! :D
Friday, May 1, 2009
Who knew!?
I'm a longggggggggggggg time Top Chef lover. I think I've probably watched each season twice -compliments to Bravo for replaying each season as many times as they possibly can! So, who knew the entire time I was watch the beautiful Padma Lakshmi on television, judging those talented chefs, that she herself was suffering from Endometriosis? Not me, that's for sure. The Endo Community needs to give Ms. Padma a huge pat on the back. She helped form the Endometriosis Foundation of America [link at bottom of post] this year with other co-founders. The board is very impressive, with a long list of talented and educated doctors. The foundation is based in the center of the universe, aka New York City, and hopes to raise as much awareness as possible. They are even taking this disease to Congress in hope to get more research money! Oh, the thought of Endometriosis actually being taken seriously.... The joy is overwhelming!
The entire point of all this is awareness and education. How do we except to be heard if we're not also understood? Our employers are just as important as Congress in the education and understanding of this disease. It's not a joke, by any means, nor is it a "gimmick." Women with breast cancer lose their breasts, women with endometriosis lose their uterus'. And, no, I am not comparing cancer to endo, though I have heard the comparison, and believe me - in the end... it's not that far off. Why does Endometriosis deserve any less recognition than diabetes (which, by the way, runs in my family), or cervical cancer? Endometriosis suffers are fighters. We brave the day one step at a time, often running on no pain killers and numerous over-the-counter medicines that simply take the edge off the pain. Imagine, if you will, getting up in the morning with a knife in your pelvis and having to go about your day as normal as you possibly can. For guys, if you read this, take your testicles (shh, don't laugh) and tape them to the side of your leg. Now, try and walk around your living room normally. Key word: normally. Hard to imagine, huh? Finally, after years of screaming for help... someone is listening.
http://www.newsweek.com/id/195406/page/2
http://news.aol.com/health/article/padma-lakshmi-endometriosis-foundation/435969?icid=main
http://www.endofound.org/index.php
Thursday, April 30, 2009
What is Endometriosis?
When it comes to young women and their periods, Endometriosis is a very scary word. The last thing a young girl wants to face besides cramps is the possibility of a life time of debilitating pain. Endometriosis, often called "Endo," affects over 5 million women in North America alone. While Endo is one of the most common gynecological diseases, it is also a disease that is fairly new. There is not much known about Endometriosis, as what causes it and how it works are still mysteries to doctors and patients alike. The symptoms are general to regular pre-menstrual and menstrual issues: cramps, heavy bleeding, etc, though often these symptoms are on a much larger scale. Many don't understand exactly what Endometriosis is, as many feel the disease is nothing more than a really painful period. On the contrary, Endo is a disease that can cause health problem after health problem, and surgery after surgery with no relief. In a nut shell, Endometriosis is when the tissue of a woman's uterus (aptly called the endometrium) grows in areas around the pelvis outside of the uterus. For instance, the ovaries, fallopian tubes, bowels, bladder and appendix, as well as inside and outside of the uterus itself are the organs that usually fall pray to Endometriosis adhesions. Endo has also been known to spread to one's lungs, which causes the lung to collapse once a month during menstruation. The scary thought is that with the limited knowledge the world has on this disease, the education is limited. Doctors keep their patients in the dark, offering a harsh drug called Lupron as a quick fix for pain, or using pregnancy as a cure. One treatment is as unsuccessful as the next. The only defining way to know if one has Endo is through a minimally invasive surgical procedure called a laparoscopy. Endometriosis cannot in anyway be seen on an ultrasound, nor can it be seen on an MRI or CAT scan. Any doctor who diagnoses a patient without a "lap" cannot be trusted, in my very humble opinion. On that topic, if a doctor pushes you to become pregnant or insists on Lupron, leave the office and find another physician. Pregnancy is NOT a cure, and while on average 40% of women with Endometriosis suffer from infertility, they also usually conceive with some medical help and hormone treatments.
I made this blog with a purpose, as most bloggers do... I want to be heard, or rather... I want Endo suffers to be heard. I'll go through every aspect of what Endometriosis is about, from surgeries, to diets, to Endo in pop-culture, and of course, my own experience. I've been given this disease for a reason, and hopefully one day I'll make a difference :)
Welcome to my Endo Blog! LET'S START THE FIGHT AGAINST ENDOMETRIOSIS!
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