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Louise
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9/26/2003
16:00:11
Subject: Endometriotic cyst
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Hi! I need to know what would happen if I just left a cyst that I have from my endometriosis. It is 4.9cm in diameter. My medical aid is refusing to pay for the operation. What will happen to me if I don't remove it? I'm so scared!


jane dumaraos
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10/13/2003
08:42:14
RE: Endometriotic cyst
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I have a previous operation last year of endometriotic cyst both of my left and right ovaries, and now the cyst return and my doctor advise another operation. i am afraid if i undergo another operation can i still have a healthy baby.


Tiara
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10/16/2003
05:51:24
RE: Endometriotic cyst
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Have you been on any medications for your endometriosis? Sometimes doctors will try that if removing the cyst is not possible. And as long as removing the cyst doesn't harm the ovary it shouldn't effect you getting pregnant. It is my understanding that some women don't have surgery done to remove every cyst they have unless the doctor feels there is significant risk of it ruptureing. When the rupture there is risk of hemmoraging but from what I've read doen't happen all the time, some women live with endometriosis for years without even having surgery for it. How long have you had it??


Louise
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10/16/2003
08:44:30
RE: Endometriotic cyst
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Thanks for your comments! Well, I had the op, and it's my THIRD one! I thought I'd be used to it by now, but this was terrible! I am suffering so much now, 2 weeks later! I have never experienced as much pain as I am now. I'm just ALWAYS sore! I know this disease has a lot to do with us not having babies, but the only way I console myself and others is by having faith in God, and knowing that I will be a mother - one day - when God thinks it's the right time!


jane
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10/17/2003
19:14:42
RE: Endometriotic cyst
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hi tiara and louise this will be my 2nd operation the 1st operation i have the doctor got 2 cyts both a 6.2cm on left and right ovaries. an now after a year both ovaries have 5.3cm cyts. I am now again feeling the pain i suffered last year. The doctor want to remove it as soon as possible because the last time my pollopian tube was bend because of the cyst. how old are you 2? tiara do you already have a baby?


Louise
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10/21/2003
17:27:54
RE: Endometriotic cyst
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Shame Jane! It sounds like you have had a really rough time! This op of mine was my third in 2 years! I am 26, and the endomet.. is in phase III, meaning I have had it for about 10 years. How old are you? Do you have children? Do you want kids? Are you married? A general question to all: do you think this disease is new? Or has it been around for years? What do you think the REAL cause is - just your opinion?


Tiara
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10/22/2003
05:53:59
RE: Endometriotic cyst
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Jane and Louise, I am 21, not married, and no kids..... and according to my GYN may not ever have them. I've had to deal with crappy medical care, you know, the everytime you go to the doctor with "female" problems they tell you "oh, your young yet, it's just the usual PMS and cramping thing, you just have a low pain tolerance, and there is no way you could be bleeding as much as you think!!" Oh and they were so right!!(drenched with sarcasm) When I had been bleeding continually for 3 months, was severly anemic, and generally making a pain of myself they finally did an ultrasound and sent me to a good gyn specialist off base. His diagnosis after a D&C, biopsy, and endoscopy is that I have uterine polyps, the lining of my uterus was so thick it must have been building for YEARS, I don't ovulate more than once or twice a year, and he was positive that a laproscopy would reveal endometriosis. SO he said he would do the surgery if I wanted or I could try suppresive therapy to minimalize the symptoms and let things calm down. I opted for taking birth control pills continuously so I wouldn't have a period and prescription pain killers when the pain is bad. Thats been fine so far but I've recently read some very disturbing things about BCP's and while I've been trying to lose weight, unsucsessfully have realised through reading that I'm estogen dominant so I've decided to go off the pills and try progesterone cream. I sure hope it works!


Tiara
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10/22/2003
06:10:29
RE: Endometriotic cyst
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Oh, I forgot....as to if I think the disease is new....No, I think it's been around for a while but has been a rare thing in the past. From what I've read estrogen feeds the disease and since estrogen dominance is on the rise by leaps and bounds thanks to the enviroment, our foods, and medication, I think thats the reason there are so many cases of it now. I also tend to believe in the theory that says that some women are born with the disease and it is "activated" by certain things in our lives. I can't remember the doctor who founded that theory, I'll have to find it if anyone's interested in reading about it. It is so sad to have to go through so many surgeries for such an ugly disease that leaves you barren at such a young age. I opted not to have surgery at the moment because I know so many women who started having surgeries in their teens and now in their early 20's are being advised to have hysterectomies because of all the scaring. I don't have any cysts on my ovaries at the moment so would rather wait until surgery is nessesary, not elective. but it's okay, God has given me a wonderful, compassionate heart for other people's children and if I never am able to have my own, which would bite, I love the idea of adoption....now to find a guy who feels the same....


momskie
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10/25/2003
06:21:45
RE: Endometriotic cyst
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Hi, I had my operation October 28th last year, I had endometrial cysts removed from my left (3cmx2cmx1cm)and right(2cmx1cmX.5cm)ovaries.I was totally clueless that I had it, I have episodes of unexplainable pain everytime I have my period. One such episode(happened in the office)landed me in the emegency room.And the attack which led to my cystectomy was so excruciating that everybody thought that my appendix ruptured,so they did an appendectomy,and there they found out I have endometrial cysts,I cried the moment I heard I have cysts,not knowing what that meant(the cysts) made so scared,the doctors had to put me to sleep to stop me from crying.I was told after the operation that I may have difficulty conceiving...I just want to give you girls a ray of hope...I proved the doctors wrong, August 9, 2003,I found out that I am already carrying my baby in my womb!a few days after that the doctor told me my baby is 5.5weeks old!There is hope. Now my baby is 4mos. old,in 5mos. she'll be out in the world,a living gift and proof that there is something we can all look forward to.This disease that we have may make it difficult for us to have babies, but not impossible... smile.


lakshmi
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10/25/2003
12:36:37
RE: Endometriotic cyst
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I had a ovarian cyst on my right ovary of about
6.4cms I under went an operation and itis been
removed. Now there another cyst growing on my left
ovary. I am going to be married in another 3weeks
Tell me whether i can have a baby with the cyst or
i should get it operated and than have a baby.
tell me everything in detail as soon as possible.
It endometriotic cyst. I have terrible pain in the lower abdomen after i pass my urine.



momskie
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10/25/2003
12:57:25
RE: Endometriotic cyst
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hi lakshmi,first of all let me extend my best wishes for you on your coming wedding. For you to have the operation or not is up to you & your doctor.I really can't say what is more advantageous,if you have the operation now or wait.Having a baby with the cyst is not altogether impossible,it may be very difficult, but like what I said,there is hope.Last Sept. 19, I had a transvaginal ultrasound,and the doctor suspects that I may again have an endometriotic cyst on my right ovary,which measures bigger than the one one I had removed last year.Nothing is impossible.Trust your heart.



Louise
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10/27/2003
08:20:23
RE: Endometriotic cyst
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Tiara, thanks a ton for your feedback, it's very informative! I was also told that I might not have kids, which sucks! Like I said, I'm 26, and don't even have a boyfriend - am seriously starting to panic! I strongly believe in fate though, and I DO believe that if I'm meant to have a baby, I will. I actually went to a woman who read my tarot cards last week, and she told me that she DOES see me with children but is not certain they are my own. I am also prepared to adopt. I also think the disease has been around for a long time, but it was not discovered, and named. It seems there are SO MANY women with it these days, and there are also so many miracle stories of women falling pregnant with endometriosis (read Momskie's story - Congrats Momskie!). Part of my treatment now (after the op), is also to take the pill, so as to not have periods, but you won't believe that even with the pill, I am bleeding non-stop. My gynae says it's a "breakthrough" bleed, cos the hormones in the pill are not strong enough to surpress it. NOTHING seems to be strong enough on me! Nothing seems to work! And I need to add, that after the 3rd op - guys - I'm in pain! I am so sore lately, and I don't feel like bothering going through the wholoe motion again! Agreed: Lakshmi - best wishes for the wedding! I am in no way qualified enough to answer your questions, but do insist that you see a gynae, as I can ensure you that if you want a baby, and you are having these problems - chances are likely to be slim! Where are you all by the way?


Tiara
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10/28/2003
06:03:36
RE: Endometriotic cyst
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Louise,
Yeah I've had alot of problems with the pill also and after being on it for a year and a half I have decided to throw them out!!! I am so sick of the side effects, the nagging doctors who want to put you into pseudo-menapause or do surgery, ect.... and for what, just to treat symptoms. I have been reading thei book I ordered and have decided to try using natural progesterone cream and sublingual drops along with vitamins and will see if this helps. I have read alot of posts in different forums about how this has worked for other women with various female disorders and how their diseases have actually reversed. I think it's worth a shot, plus, natural progesterone has NO side affects!! YEAH!! So right now I am withdrawling from the pills ggggrrrrr.... so at the moment am doing the usual cramping and so on.....such fun!


Louise
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10/28/2003
08:24:04
RE: Endometriotic cyst
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Tiara, PLEASE tell me how it goes with this new treatment, I believe in things like that, and am also desperate to find the most effective and harmless treatment. Where are you by the way? I want to ask you something. Can I become anemic if I don't stop bleeding? This bleeding won't go away. Even on the pill. I am losing weight big time, and wonder if I'm becoming anemic. Can that be a cause of weight loss?


Tiara
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10/30/2003
04:18:54
RE: Endometriotic cyst
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Louise.... You haven't had bloodwork done to check if your anemic??!! I am severly anemic despite being on the pill so I am sure that it's possible you are. Anemia causes symptoms like fatigue, easy bruising, paleness especially in the mornings, weight loss, lots of stuff! I would go to the doctor and DEMAND to have bloodwork done, being anemic from uncontrolled bleeding is what cause my anemia and it takes the body FOREVER to recover from it if it's severe. I was put on major iron pills which I promptly threw up, given new pills which I could keep down but I had terrible diarrhea with them(which in it self can cause anemia) so I quit taking the ones from the doctor and got a good iron supplement from the health food store which didn't make me sick and I'm sure my body approved of more than the synthetic crud you get from the pharmacy. Oh, I'm in Alabama. Where are you? And I sure will let you know how my experiment goes.... if you want to know more about why I'm trying this you should read this book "The Estrogen Alternative" by Raquel Martin, make sure if you get the book it's by this author 'cause apparently there is another book by the same name that's not as good.


Louise
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10/30/2003
07:52:37
RE: Endometriotic cyst
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Hi Tiara, no I have never had bloodwork done. I didn't know I should. I really am starting to feel left in the dark here! My gynae doesn't tell me anything like this! I am constantly being asked if I'm anemic, and it plays on my mind. Is it very serious if you are anemic? I am in Johannesburg, South Africa. I find it fascinating that people from all over the world suffer with exactly the same things! I must admit, it seems to me you know a lot more about this disease than I do! I don't know what Estrogen has to do with it, and as such would never have looked at that book. All I know is that the lining of the uterus grows every but inside the uterus, and sometimes you get cysts. And I also know that you probably can't have kids. Is there anything else that's important that you think I should know? Ha ha! "Ask Dr Tiara"!! I'm so pleased to have "met" you! I feel a lot better about my illness now. My gynae has told me that there is basically nothing we can do. He tells me that what I need to surpress it is a certain hormone injection. He calls it the "Rolls Royce of treatments for Endo..." It costs R4000.00 for one - and I'm supposed to take one a month! So because I don't have that money - I can't be traeted! Can you believe I'm STILL bleeding Tiara, this is now day 9!


Tiara
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10/31/2003
05:30:06
RE: Endometriotic cyst
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Louise,
Oh my dear, and I thought that I had crappy medical care! Well normally in the U.S. when you go to a gyn with a problem the do basic blood work to check your hormone levels, red and white blood cell count, and if you have excessive bleeding the will check your hematocrit and hemeglobin levels to see if your anemic. I mean, I know medical care in other countries is different but wow. Does he want to give you Depo injections or Lupron? Those seem to be the drugs of choice and yes I agree they are very expensive. I refused to use either one after researching them and talking to women who have used them. Thats why I decided to do something on my own. Your period has been on for 9 days?? I bled continuously for 3 months before I could get someone to do something. So I can totally sympahtize with you. Oh, and about the estrogen thing, check out these websites, they may make some things clearer. http://www.nexusmagazine.com/hormone2.html
http://www.nexusmagazine.com/HormoneHeresy.html
http://www.womens-menopause-health.com/progesterone_cream_endometriosis.htm
LOL, alot of my friends call me DR.Tiara, I have a thing about researching stuff. And if I were you I would start taking an iron supplement, it may make you feel better. Just make sure to keep the bottle out of reach of children and pets. iron supplements are the leading cause of fatal poisonings in children under 6, and are poisoness to anyone in large amounts.


Louise
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11/03/2003
11:40:36
RE: Endometriotic cyst
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Tiara, I need to ask you something, it's a little personal. I have been wondering, do you think it's possible that women with endometriosis, could possibly have been molested when they were young. Do you think that could part of the cause? Louise


Tiara
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11/04/2003
05:03:29
RE: Endometriotic cyst
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Louise,
Wow, I don't think being molested as a child would cause endometriosis. However, being molested causes problems just as emotionally damaging as endo is physically damaging. I know someone personally who was molested as a young child, fortunately someone near to her realised what was happening and dealt with the issue. Such terible things humans are capable of doing to others. Words cannot express how sorry I am if you have been a victim of such things. I will keep you in my prayers.....


Julie
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11/15/2003
03:37:35
RE: Endometriotic cyst
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Hi Everyone. I'm new to this system. I have been married for 3 1/2 years and after 6 weeks of marriage, i had excruciating pain around my pelvic area, found out i had large cysts that needed removal and had laproscopic surgery. They found endometriosis. I was devastated. They put me on Lupron Depo shots for 6 months and I went through menopause at the age of 24. Now three and a half years later, I found out yesterday that I have multiple cysts on each ovary that are hemmoraging. I am scheduled for surgery on Wednesday at 11:15 CST. We are DESPERATE for a baby, I've taken all the necessary drugs, including fertility to achieve this. I'm scared. God put me on this earth to bear children and be a mother to my own. Adoption is great, but I want my own. Does anyone have anything to say to make me feel better? I feel so alone, not to mention creeped out that a foreign body is lurking in my reproductive system! Lonely and scared in Arkansas, Julie.


Stacy
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11/17/2003
03:25:43
RE: Endometriotic cyst
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Recently I mention to a doctor at a small health clinic, one of my symptoms for the flu was diarrhea. When he asked what color it was I said black, not thinking a thing of the color of my sh*t. He then suggeted doing blood work, and to make this long story short, my hemeglobin count came back 9.2. I have given approximently 20 viles of blood over the last 3 weeks and are waiting on the final results of these test to return. I have had an IUD since October of 2001 as a birth control method. I bleed for approximently 10 days and bleed very heavily at that. I often have sharp pains in my lower abdomen, and could sleep till noon everyday. After reading everyone's message I have found lots of common symptoms with some of you. Is there anyone out there that might have an answer for me? I'm scard, new to all this, and worring myself sick. As of this coming Friday my doctor has made the decison that he will remove my IUD and start me on "the pill" as a hormone precaution. P.S. I also go for an ultrasound ths Friday before my visit, because he says my uterus is slightly enlarged. Any information will help. Thank you, Texas


Tiara
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11/18/2003
05:31:32
RE: Endometriotic cyst
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Julie, What does the doctor want to do for the
hemmoraging cysts?? I understand about wanting to
have your own children, I'm single so thankfully
haven't had to deal with my infertility in my face
yet. Have you tried using birth control pills
continually? Or did your doctor just use the
lupron without trying anything else first?? I
have been using bcp's continually for over 1 1/2
years and just recently went off of them to do
some experimenting of my own. I'm trying natural
progesterone therapy because I was so tired of all
the doctors trying to inject me with hormones all
the time. I don't know how it will work
yet....they say you have to give it 3 months
sometimes before you notice a difference.... but
my skin is softer and clearer, I'm not as weepy
and phsyco as I have been, no more hot flashes or
nausea, and I ovulated a few days ago!!!! which is
impressive considering I haven't done that in a
while. If you all are interested I'll keep you
posted about my first period while on my new
regime, I don't expect a huge difference but any
little bit helps, I haven't had a normal period
since I was like 12! Later!
Sweet Home Alabama......


Tiara
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11/18/2003
05:52:40
RE: Endometriotic cyst
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Texas,
They'll probably give you iron pills for your
hemaglobin count, mine has been lower than yours
is, and I've given the many, many vials of
blood....funny thing is before I started having
all of these problems I had a phobia of needles, I
mean it took like 4 nurses to hold me still for
just a vaccine..... now drawing blood is nothing,
although I still can't watch them stick
me...LOL... My guess is they're doing tests to
check for iron deficiency anemia which you
probably have from so much blood loss. I had an
ultrasound for an enlarged uterus, the worst part
of the whole procedure is having to pee!!! Make
sure you drink ALL the water they give you cuz I
have a friend who didn't and they made her wait
another hour and drink more water before they
could do the test. All of your symptoms sound
just like mine however I've never used a IUD. The
ultrasound showed the lining of my uterus was
abnormally thick so I had a D&C done. They wanted
to put me on depo injections...I said no, I have a
friend who bled continuously for 3 mths after an
injection and there was no way I was doing that.
Then they wanted to do Lupron injections but I'm
saving that for a last resort so I used bcp's
continously but from some reading I've done lately
I decided to try something else. But I will tell
you this, after years of bleeding 2 wks at a time,
then bleeding for 3 mths, having a D&C and using
the bcp's was heavenly and calmed down all teh
endometrosis symptoms plus I only had 4 periods a
year. I hope the bloodwork and ultrasounds give
you some anwsers. Bye!!
Sweet Home Alabama....


Julie
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11/18/2003
14:56:25
RE: Endometriotic cyst
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Alabama,
Thanks for the information! I'd love to hear your progress. I go under the knife tomorrow (Wednesday morning) so all prayers are welcome. I am so scared of what the doctor will find once he's in there. We'll see. Hopefully this will help me get regular and be able to ovulate. No, my doctor put me on Lupron after my first surgery. It was so awful. I've been on and off bcp since I was about 17. They did normalize me but you can't be on bcp if you want to get pregnant.
Woo Pig Sooie, Arkansas!!!


Stacy
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11/18/2003
16:34:54
RE: Endometriotic cyst
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Julie,
Woo Pig Sooie!!!I was born and raised in Arkansas. As a matter of fact I graduated High School from Cedarville, Arkansas. So as always Julie, I'm glad to meet a fellow "Pig Fan."
Texas



Julie
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11/18/2003
16:39:57
RE: Endometriotic cyst
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Texas,
My mom's side of the family live in Fort Worth, so I'm a Cowboy fan too:). Too funny. Thanks for all your support Texas, it means a lot to me to have someone that knows what I'm going through. I love my friends here at home but they don't quite understand it all.
OINK!


Stacy
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11/18/2003
17:00:47
RE: Endometriotic cyst
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I went for my ultra sound this morning, and everything looks fine. My uterus is normal and all other measurments were as they should be. However, the technition did tell me that she would not be able to see cyst with this type ultrasound. In the morning I will have my IUD removed, and hopefully the results from my lab work will be back. Yesterday I cramped continiously until I dubbled over in pain. All day it felt as though I was starting my period, I even went to the bathroom to put in a tampoon, but there was no blood. Now that all this has been brought to my attention, I myself have started noticing things I guess I took for granite. For example, yesterday when it felt like I was starting my period I was passing this slimmy, clear colored discharge that had blood in it. Has this ever happen to any of you? I have heard many of you metion the Depo shot, and some of you the pill. I have until the morning to make up my mind which of these I will choose, any suggestions?

P.S. Tiara, I have been taking iron pills since May of 2001. I had Gastric Bypass surgery in April of 2001,a daily supplement of iron along with a monthly B-12 shot are required. My hemo count is still 9.2. Could you please tell me what bcp is? Thanks for your concern. Texas


Tiara
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11/19/2003
05:33:44
RE: Endometriotic cyst
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Arkansas,
I'm sure your surgery will go just fine (following my mom'm manrta to think happy thoughts} I have heard some very unpleasent things about lupron, which is why I have been so stubborn about using it.... How would the surgery be able to help you get pregnant?? Are your fallopian tubes involved?? Oh, the reason I ovulated this month is because of using the progesterone, if you don't have enough progesterone in your body you can't concieve, and even if you do you have a high risk of misscarrige if you can't sustain a steady level of it. I have a friend who misscarried twice before her gyn realized that it was because her progesterone levels were fluxuating too much, put her on progesterone and monitored her levels, and she carried her 3rd pregnancy to term! I'll keep you in my prayers....
Soggy and wet in alabama


Tiara
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11/19/2003
05:52:55
RE: Endometriotic cyst
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Texas,
I was told that alot of times they can't tell anything until they do a laproscopy. BCP's is an abbreviation for "birth control pills". I chose the bcp's because if you have an adverse reaction to them you can stop taking them but with depo shots if you have one and bleed continually they can't really do anything about it, you just have to wait it out (according to my gyn). You could try the birth control patch if you don't want to take a pill everyday, you only have to change it once a week. Yeah I do the wierd discharge thing, and feeling like I'm gonna start my period but not bleeding. I was given darvocet for the cramping since tylenol won't touch it and it worked for a bit but I have this hangover headache with it so I tried taking Celebrex starting a week before I'm supposed to start and use it though my cycle and it works so much better. It doesn't totally take away the pain but it makes it bearable, plus I'm not having to carry around a narcotic pain medication!! I use Celebrex instead of Motrin because it's so much easier on teh stomach and doesn't make me bleed heavier. Maybe your doc will give you a prescription for it. Hope your appointment goes well tomorrow.
Sweet Home Alabama....

P.S.Have your doctors considered that you may not be absorbing the iron tablets?? Maybe you could try iron injections....


Stacy
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11/19/2003
22:13:29
RE: Endometriotic cyst
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Tiara,
My visit this morning was GREAT! The good news is all 12 viles of blood came back perfect. Knowing that I don't have diabetes, that my body is making blood, and that my liver enzymes are good, was GREAT news for me. However, I hope you all can make room for your newest member to the "Resonance Support Group," I have been diagnoised with Endometrioses. My choice of hormonal theropy was the vaginal ring. I am going to try this for the next 6 weeks. Hopefully by then all will be well, and if not I will choose between a full hysterectomy or lapriscopic surgery. For me things could have turned out worse. I prepared myself for Cancer, and got Endometriosis. I suppose that the worst part of this diagnosis is that I may not ever have children again, but as for looking on the brighter side, I have two beautiful children already.


Tiara
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11/20/2003
04:00:44
RE: Endometriotic cyst
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Texas,
Isn't it nice to find out that things aren't as bad as we can dream up!! It's pretty easy to imagine some awful things when they're taking tons of blood and doing ultrasounds ect... Even though having endometriosis is no bed of roses. What exactly is the vaginal ring? They diagnosed you without doing a laproscopy?? My doctor refused to make a final diagnosis without it so I have "possible endometriosis" even though all my symptoms are textbook, plus uterine polyps and anovulatory cycles. The uterine polyps are more scary to me than anything at the moment since I had a ton of them and they are a precursur to uterine cancer, and you can't get pregnant if your uterus is "inhospitable" and you aren't releasing the eggs to begin with. Boy, I usually enjoy being a woman but there are some aspects of it that BITE!! LOL But seriously, I'm glad your appointment went so well, and I hope the vaginal ring does what it's supposed to.
Sweet Home Alabama....


Louise
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11/20/2003
09:35:29
RE: Endometriotic cyst
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Hi all! I've been quiet for a while! Just to update: found a new gynae! Brilliant! He is heading up the Endometriosis Institute in Southern Africa! Someone that KNOWS what he's talking about! It seems that ANOTHER lapscope is due (4th in 2 years!). He needs to remove some ligament - Utery ligament..????? that's infested with endometriosis! Funny though - the last op I had was 1 month ago - previous gynae didn't pick that up??? My previous gynae - I'm afraid to say - was a wanker! LOL! Tiara, any feedback yet on the new medication you've been trying?


STacy Killian
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11/21/2003
17:01:40
RE: Endometriotic cyst
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Tiara,
The NUVURing in exactually what it says. It reminds me of a plastic braclet I used to wear looped together with another around it, back in high school. You bend it in the center so that it forms the look of a figure eight, then insert it into the vagina for 21 days, remove it for 7, and so forth. It is as effective as the Depo shot at 99.%, but most importantly it's a time released hormone for my body. I'm anxious to try it on Sunday, and heck worse come to worse, I'll pick something different 6 weeks from now. I kinda look at it like shopping for a new bra, if you get it home and it doesn't perk things up, try a different kind next time! LOL
Take care this weekend, Texas


Tiara
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11/23/2003
00:19:56
RE: Endometriotic cyst
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Texas- That is soo funny, although I have to admit I hate bra shopping....never can find anything that fits just right and "perks things up"!! LOL

Louise- I am soooo glad that you have found a new doctor....how lucky are you!! Has he done any blood work to check for anemia yet?? Oh, and find out if he excises the damaged tissue or just uses a laser. The 3 leading doctors in the US say that excision is the most effective way, you have less chance of regrowth in the same area. Just out of curiosity...hows the weather in South Africa??

Sweet Home Alabama....


Tiara
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11/23/2003
00:30:52
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To All- About the new treatment....I have now been without BCP'S for 29 days and have been using the progesterone cream and sublingual drops for 25 days. My skin is softer, the annoying "pregnancy mask" (as my mom calls it) I got from the BCP"S is going away, no nausea or hot flashes, I ovulated this month (YEAH!!). I stopped using the cream and drops as directed on day 28 of my cycle and so should start my period within the next 24 hrs. Not looking foward to that.....but that will be the true test to if this new thing is gonna work. Oh I forgot,one of the best things about this new treatment....NO PMS!!! None! And believe me, I am a %$#@^ when I'm PMSing, and I have had fewer headaches. LOL One funny thing though, my brother is so nosey, he's 19 and is always trying to figure out what I'm writing (I write poetry which no one is allowed to read)and so he found the journal I am keeping a day by day accounting in of my symptoms and thoughts on this new treatment...he thought he had hit the jackpot, until he started reading!!!! LOL He was sooo mad!! LOL He hasn't tried to read over my shoulder since!! Funny, huh!?! Anyways, hope everyone is having a great weekend.

Sweet Home Alabama.....


Julie
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11/24/2003
15:50:10
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Hi Everyone. Thank you for the prayers. The surgery went well. I have a moderate case of endometriosis, which is actually good news since it's not severe. I've had this for at least three years, and the laporoscopy shows it hasnt gotten worse. The doctor did find that my ovaries were tucked behind my uterus!!! Have you ever heard of such a thing? He put a dye through my veins to see if fluid was flowing correctly through my fallopian tubes,all was working fine. So pretty much all good news. I go to see him on Wednesday to find out where to go from here. I have three new incisions on my belly to add to the two other beautiful ones. I have decided not to call myself "infertile"...To be on the positive side, I call myself "prefertile".!!! Try it, it will make you feel better. Take care everyone,
Arkansas


Janet
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11/25/2003
11:34:46
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Hello to Tiara, Louise and other women that share our problem.
I'm Janet from Singapore, just underwent lapascropy on 11 Nov to remove 2 endometriotic cysts on my left ovaries, one measuring 4.5 and the other 4cm in diameter. I was also given Lucrin Depot injection 3 days after my operation.
Today is my 13 days after the op, but i 'm still bleeding. I am a little frightened as the doctor told me the bleed will stop after a few days, but now it's the 13 days. Each day the flow is different, sometimes heavier.
Just to share how I was diagnosed with endometrima. In late Sept this year, I have a CA 125 blood test by a health team in my work place. The result was 55.5 , which is beyond the norm (0-35). None of my colleagues have such high readings, theirs were 2, 5 or 3.
I went to a gyn and the doctor after doing an initial investigation said i'm young, 35 years old, and with my family history, i would be alright. He suggested a thorough test , ie ultrasound and a second CA125 test. the second CA125 was again 55 and the ultrasound revealed an abnormal growth on my left ovary. The gyn suggested me undergoing an op. as he said he could not promise that there isn't any malignant growth. I was so frightened and broke down to tears. During the opt, the doctor was able to do an instant test to see any malignant growth. Right now, it's 80-90%sure that it's just two endometric cysts. However, there' s still another 20 % possibility that it could be cancerous, which i will only be able to know on my visit to the hospital on the 27 Nov.
I was shocked initially to learn abt the cysts and asked when did it happen? the doctor said abt half to a year. When I recalled and after reading this forum, i found some common symphthons, eg. i was anemic, (went on iron pills since April) and i have lost 10 kg this year!
Now, I 'm very pessmistic abt my situation, i understand endomethioma would come back and i'm afraid would the growth turn to a malignant one without us knowing? Tiara, do you have any info on this?
Did anyone of u have elevated CA 125 test result like me ? With this result of 55.5, does it mean that i'm more prone to having cancer? Thanks to anyone who could give me a reply.


Louise
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11/25/2003
13:04:49
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Hi Julie! Wow! What stunning news! It's actually awesome seeing how positive you are! It made me smile - really! I'm so pleased! Hey Tiara! Thanks so much for all your info! You really do seem to be the guru of our little 'family' here! It's so interesting hearing what you say! Janet - I'll get to you in a moment. So, blood tests revealed anemia - yes! You were right Tiara. Am on iron tabs too, and seriously feel a lot better. I must remember to find out his methods of removal. The weather is FANTASTIC! We have just entered into the start of the middle of our summer (huh???) What I mean is that obviously mid-summer is the hottest and best, and we are almost at mid-summer. I am planning to go to Cape Town over christmas - which ought to be great! My next gynae appointment is the 11th Dec. Janet - your poor little lost soul! From reading your message - I personally don't think it's cancerous. It is very seldom that cancer and endometriosis go together. Endometriosis is what they are calling the "Modern woman's Disease", and is purely related to hormones, and reproductive organs - not cancer! As you may have picked up - what women with this disease fear tremendously - is infertility! Cancer does not worry us that much. Do you have children? 35 years old, that's quite old to be diagnosed with Endo (isn't it Tiara). I am hoping you are married, with kids, because then you have at least achieved that. The doctors (in my experience) also never paid much attention to my excessive bleeding. It's horrible to go through - I bled for 8 days after the op, had a week break, then bled for 17 days thereafter. You need to get the correct hormones to stop the bleeding. But post-op bleeding is quite normal. As long as your diagnosis has been CONFIRMED as endometriosis, then I would not worry too much about cancer - although it may be something else, which I really hope it isn't. Hang in there - and keep us posted! PS, prayers always work very well! How are you feeling lately Tiara?


Janet
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11/25/2003
18:02:48
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Hi, Louise, thanks for your enlightenment. I am married with a 8 year-old-girl. I will definitetly keep you posted of my next visit with the gyn on the 27.
Just being curious, did any of you do a test on CA 125 and what was your result shown? Mine was high, as it read 55.5 and that was how i went to the gyn and found to have 2 endometriotic cysts. As CA 125 was a test for ovarian cancer, that raised my concern about malignant growth.
Thanks to the advance in the technology that we are able to find people who share the same problem. it doesn't really matter who you are, when you come from, and it's great to share our experiences.
Thanks to all of you here.
I'm flying off to Shanghai on the 29 Nov. Really hope I could recover as soon as possible.




Tiara
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11/26/2003
02:18:22
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Julie, How wonderful for you that it is only a moderate case, and I have heard of ovaries being positioned in the wrong place....although it is interesting that they didn't see that until your surgery...haven't you had an ultrasound before?? I LOVE the "prefertile" phrase, I'll have to add it to my vocabulary!!

Louise, I'm glad you finally got some bloodwork done and that the iron pills are working well! It's sounds lovely in South Africa at the moment....I, on the other hand, am FREEZING!! It got down to 27 degrees F last night. Funny thing is, I've lived in places that get to below zero and now that I've been living in Alabama I can't tolerate the cold!! LOL And I've always been a winter person....it's a disgrace to my northern yankee heritage...LOL Oh, and if I'm the "Guru" do I get a turbin?? LOL

Janet, I have not had a CA-125 test done, it hasn't even been sugested so I don't know what my score would be. I'm not sure if it's common with women with endo but I'll check it out for you. I think if the preliminary pathology has shown non-cancerous you have a pretty good chance of it being so. I can sympathize wiht you, I've gone through the cancer scare, having to wait 2 weeks for the pathology report, every day seems like forever...but don't worry, your in good company here!!! You can grumble and gripe and rant and tell us what you're scared of because we all understand what your going through ((((HUGS)))) About the bleeding, just mention it to your doctor, I think it's a possible side effect of the Lupron. Your body is trying to adjust to the fact that a medication is putting it into a psedo-menupause. Hang in there!!!

Oh, Louise, you are right, the age of diagnosis for endo is getting younger, usually women are diagnosed in their 20's but that's because the myth of "normal menstrual cramps" is gradually being dispelled. However, some women ignore symptoms of endo, and some don't ahve problems with it until something triggers it, then the growths begin. And as to how I'm feeling, I think I'm getting the stomach flu...my mom and brother have had it and I think they gave it to me!! GRRR.....so not cool! LOL Anyways, hope all you USA residents have Happy Thanksgiving, and to the rest, have a good day!!
Freezin' cold in Alabama


Tiara
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11/26/2003
03:11:45
RE: Endometriotic cyst
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Janet,
Okay, I went on a research "hunt" about the CA-125 test. What I found out is:

1. There are some people who have naturally have an elevated ca-125 level.

2. While almost all healthy people have CA 125 levels below 35 U/ml of serum, cancer patients may have CA 125 levels of 10-thousand to 20-thousand U/ml when they are diagnosed.

3. While ovarian cancer cells produce CA-125, so do normal cells. In many cases, inflammation or irritation of tissues in the abdomen,or conditions including uterine fibroids can cause CA 125 levels to rise. Endometriosis, liver ailments including hepatitis and cirrhosis, and pelvic inflammatory disease can also affect CA 125 levels.

So, CA-125 is a good test to have done if you have suspicious ovarian growths or a history of ovarian cancer in your family . However, it doesn't automatically mean you have ovarian cancer since many other things can cause that level to rise.
Hope this helps!! I know I'm glad I checked it out in case I ever have that test done.
Sweet Home Alabama


Julie
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11/26/2003
15:10:22
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Okay girls, I am LOVING this site! I cannot wait to get that little email that says "someone has responded on the resonance website." It makes my day to read how everyone is doing, whether it be good or bad, it makes me feel that I'm not alone. I love the support. Let's continue to help each other out and we'll all go a very long way. Remember, we're all PRE-FERTILE women!!!

Tiara,
Yes, I've had an ultrasound, I had one right before my surgery and they didn't say anything about that. I go for my post op visit today. Wonder what the doctor will say. My tummy is so swollen, I look like a marsupial!! When will it go down? It's been a full week now. I can barely fit in my own clothes. Of course, all of this is so secondary to the cause.

Janet,
I hope you are doing well and please know that I support you and pray for you daily that you will find comfort in those around you and will find good news. Remember, there is a reason for everything and what does not kill us makes us stronger! Don't let your mind play tricks on you.

Girls, I wish ALL of you such a wonderful thanksgiving and I hope you spend valuable time counting your blessings. Regardless of our womanly problems that have brought us all to this site, we are fortunate. Take care all!
Julie in Arkansas
Go Hogs/Beat LSU!


Tiara
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12/01/2003
15:51:40
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Julie,
I hope your post op visit went well...I still think it's strange that no one has ever commented on teh position of your ovaries before. I don't know about the swelling since I haven't been cut yet...

Hope everyone had a great Thanksgiving..... I personally did, we had enchiladas for dinner....I know, not usual Thanksgiving food but we're all vegetarians so turkey is out of the picture..LOL And the shopping the day after was INSANE!!! I wonder what is the heaviest shopping day of the year in other countries??

Sweet Home Alabama...


Julie
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12/01/2003
15:55:26
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Hey Alabama!
My post op visit went well. He is putting me on the highest dosage of clomid, as well as provera for me to even start my period. I'm so tired of taking all these drugs just to feel like a woman!!! UGH!
He told me that my ovaries were underneath my uterus b/c the endometrial scar tissue was pushing them back there. He said he corrected it. Nope, nobody has ever said a word about them being back there. I really hope my doctor is good. I think he is but then I wonder why he's put me back on all the same drugs I was on before the surgery THAT WERENT WORKING! Can you tell I'm frustrated?
I'm trying to be positive, really!:)
Have a good Monday everybody!
Julie


Tiara
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12/02/2003
18:15:15
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Julie,
Yeah, I guess the scar tissue could do that, and the more surgeries you have the more scar tissue develops, although we are lucky that nowadays most surgery for endo can be done laproscopically. Has your doctor tried another form of progesterone?? Provera is a synthetic progesterone that is not identical to the progesterone made by our bodies so while our body recognises it partially as a progesterone it doesn't work in quite the same way and some womens bodies won't except it. You could ask your doctor if he would try progesterone synthesized from wild yam extract, you can get it in tablet form from some pharmacies and the progesterone made from it is identical to the one produced by the human body. Just a thought. Gotta go!
-Tiara

Sweet Home Alabama....


Julie
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12/02/2003
18:20:35
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Hey Tiara,
I am currently on Provera to make me start my cycle, and then the highest dosage of clomid. We'll see how it goes. It's helped in the past, but I can't start without it now! My last period was Sept 20th!!!
UGH!
Someone send me some positive vibes to this "pre-fertile" woman!
Julie


Tiara
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12/11/2003
15:36:05
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Julie,
Sorry I haven't replied...I didn't get a notification e-mail about your post..must have forgotten to click the box. I hope the medication will do the trick!! Think happy thoughts...mind over matter..LOL That's my mantra when I have to have something unpleasent done or I don't think something is gonna work. Got all your Christmas shopping done!!??

Happy Haunakkah, Happy Kwanza, Merry Christmas!!
Tiara


Julie
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12/11/2003
15:47:37
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Tiara!!! There you are! I'm doing okay, I haven't even started my pills yet...i was hoping i'd start on my own before i let the pills invade me. So far no good. I guess I should start them huh? September was a long time ago to have a period.
WOuld you believe I haven't even started my shopping yet?? I am the reunion chairman for my 10 year H.S. reunion and I've been so busy with that! Hope you're doing okay!
Julie


Lily
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1/14/2004
07:40:15
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I am 40 Yrs old. married having 13yrs old son. Before i delivered my son i had molor pregnancy( vesicular mole)and treated with methotrexate.After 10 yrs of this history when i affected with amebiosis ihad done my sacn and icame to know there is one fibroid measuring 4x3.8 cm and also 3.8x 2.8 cm of endometrian cyst in left ovary. Six month back ihad opinion from leading gynecologist of the city and she opined that,since iam not having any sufferings and symptoms surgery is not required and she instructed to do scan once in a six month and if there is any abnormality can go for surgery or furthur treatment.After six month i have repeated the scan and the findings are , the size of the fibroid is grown by 1 cm and there is no growth in endometric cyst. I have done CA-125 AND THE RESULT IS 65 MU ( I BELIVE UP TO 35 IT IS NORMAL).I have done MRI also, impression is sugeestive of choclate cyst with cystogenic areas and contains some solid materials. After this i had second opinion with some of the doctors and they are advicing me to go for open hystrectomy with removal of both ovary. My sugery is fixed on 21.01.2004. what is your advice


Stacy Killian
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1/15/2004
00:35:59
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Long time no speak! The NuvaRing is wonderful. For two months now I have actually had a "NORMAL" period. I bleed seven days and then nothing, done, finished, over-with! Better than 12 days a month. If anyone is looking for a new birth control, I highly recommend it! It's easy to install, you can't forget to take it, and NO it won't fall out. Insurance will also cover it just like any other BCMethod as long as you have a letter of diagnosis. Happy New Year!!! Texas


Tiara
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1/15/2004
05:39:29
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Lily,
You are having a hysterectomy for the fibroid or the endometrial cyst on your ovary?? If they told you that 6 months ago surgery isn't necessary and your fibroid has only grown 1 cm I guess I don't understand why they want to do a TOTAL hysterectomy!! Have they even talked about doing a biopsy to check for cancer before doing such a radical surgery?? I am just so blown away by that! Have you read some of the previous posts in this section?? I posted a message on 11/26/03 about CA-125 tests. The levels can be elevated by many benign conditions including fibroids and ovarian cysts. I'm just wondering if they gave you any reasons, besides the blood test results, as to why they want to do such a major surgery....do you have a family history of ovarian cancer?? HHHhhhmmm...... are you living in the USA??

Stacey,
I'm glad the "ring" is working so wonderfully!! I'll have to keep that in mind for when I have to have serious birth control. I'm still trying the progesterone cream thing and it's working well. I've not had any bad days in 3 months which is amazing!!! And the best part, as I keep saying, is I don't have to put up with the side effects of birth control pills!! Later!

Tiara


Stacy Killian
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1/17/2004
17:32:50
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Tiara, I have a question... If I were to stop using birth control all together, "What's the worst that can happen?" I should have installed my NuVARing on the 10th, I didn't just to see how I would feel, and I seem normal. My period stopped when it was suppost too, after 7 days. I actually wanted to have sex with my husband, and either it was just to "wild and crazy" that I did not notice the pain or I'm loosen it! I was just wondering, if I did basically nothing, what's the worst that could happen? Texas


Tiara
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1/20/2004
06:30:45
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Stacy,
Well, the worst that could happen.... the endometriosis could get worse.... it would take some time, you may not notice it at first but after several months(which is how long synthetic hormones take to leave the body) you may notice an increase in symptoms. Or, nothing could happen...but I think chances are the endometriosis could get worse although it would take months for that to happen. However, you could try a different hormonal method. I know people may think I'm weird for quitting the birth control pills and using just natural progesterone but since I'm inclined to believe, after the research I've done, that endometriosis is an estrogen fed disease it makes sense to me to quit using the estrogen.
Why do you want to quit using the ring?? Are the hormones affecting your libido?? That would really bite. One of the reasons you may not have had any pain "last time" is because the hormones from the ring may have calmed down the endometriosis at the moment. Or it could have been that the IUD had been causing some of the pain. Well, hope I haven't confused you too much. Let me know what you decide to do. Later!!

Tiara


Stacy Killian
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1/22/2004
16:07:00
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Tiara,
Heres my biggest complaint...When using birth control I have NO sex drive, pain while having sex, and I'm dried up down there like a prun! Since the first of the month, with NO ring...I'v had sex like a wild girl, no pain, and a wonderful NATURAL lubricant!!! To tell the truth, my body over all, feels 110 percent better. I'm thinking theres nothing wrong with me, seriously, that's how good I feel.

And, no your information is not confusing. Thanks for the help!


Tiara
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1/28/2004
04:37:51
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Stacy,
Oh my gosh, I sure know about the "dried up like a prune" thing!! I was like that big time on the pill. Apparently it's caused by a lack of progesterone, which is why women going through menopause have the same problem. The problem went away somewhat when I stopped the pill also but got even better when I started using the natural progesterone.
You know, the only definate way to diagnose endometriosis is a laporoscopy, there are other problems that can cause some of the symptoms you were experiencing besides endometriosis. Alot of your symptoms could have been caused by the IUD like painful sex, heavy periods, abdominal pain, severe cramping ect... so there may be no reason for you to have to be on birth control. To be honest with you alot of GYN's are unfortunately trained to give just about every women who walks into their office BCP's like it's some cure all. So if you feel better off of them MORE POWER TO YA!! LOL I'm sure your husband is lovin' it!

Tiara


Jannie
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2/05/2004
02:06:56
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I was diagnosed with endometriosis at the age of 12. I ended up having to have emergency surgery, which I almost died on the operating table from. the doctor wanted to do a partial hystorectomy on me then but my mom refused to let them. The doctor informed my mom at that time that I would never have children, well I was diagnosed with full blown endometriosis again a year before I graduated high school and the doctor put me on birth control pills to help regulate my cycles. My senior year in High School I was given a Miracle, I was pregnant. I had difficulty with the pregnancy and even had my baby 9 1/2 weeks early. Well in 1996 two years later the pain was so unbearable from the cycles that I went to see a specialist in the field, he done emergency surgery on me that day. According to him the cysts were at the point of bursting and the polyps were all over my uteras and surrounding areas. That made my second surgery. Since the surgery I have had a cycle about every 2 to 3 months that last a month or two. The doctor said that it would eventually come down to the point of a full hystorectomy. It has come to that point adn I am only 27 and I have been battling this disease for fifteen years now. The doctors said that they had never seen a case like mine or in such a young person. They also said that it was not hereditary well I have news for these "doctors" every female from my mom to my aunts have had this disease and my older sister had it so bad that it made her infertile. My little sisters were the only ones to avoid this terrible disease. I thank God everyday for my miracle, who by the way is almost 10 years old and healthy. I hate having to have this surgery but it is the only way that I might have some relief from this. I have hemmoraged all that I can. I certainly can't have anymore children so I have no other option but to have this surgery, I guess. By the way I also had an aunt that died in her teens of a rare blood disorder which my grandmother said was like mine or atleast I had the same symptons. It has now been determined that she had this disease which caused her to hemmorage. So you can understand why my family wants me to have this taken care of now rather than wait about it. If anyone needs to talk about his disorder just let me know.
Jannie(Alabama)


Tammy
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3/01/2004
04:31:50
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hi everyone,

Think I need some suggestions after reading all these posts

I'm 40 and in 6 months I've had 8 periods.Not normal for me. I went to my GYN and we decided to wait 3 months. I went back in Jan had blood work and sono. Sono found 2 cysts. I requested CA125 which came back 53.5. Based on that GYN decided to do an IVP and Abdo/Pelvic CT scan.

IVP came back normal. CT scan found the same 2 cysts as the sono one on each ovary.(In 1987 in my 8th month of pregnancy I had a cyst rupture and emergency surgery) GYN called wants to do laproscopy to remove one cyst on left ovary.This one has some calcium deposits in it. But,they both look to be non-cancerous according to her but they will be biopsied.

GYN thinks that I should have a hysterectomy.
(what a shocker) she said I didnt have to but she recommends it since 53.5 CA125. Wants me to sign consent that if she gets in there and finds severe endo which she thinks she will and thats what is causing elevated ca125.

I asked her what she would recommend for her daughter she said since I already have 2 kids she would advise me to get it down now. Because she thinks its Endometreosis. I have no pain and no symptoms other than the 2 extra periods, and she says no way its the start of menopause.

What do you all think? I see her on 3/02/04 to discuss my options.

Thanks Tammy


Margie
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3/05/2004
23:48:39
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Hi I just wanted to say that I was diagnosed after my 2 daughters were born, I am so glad I had children when i was 19, I have had 2 lap surgerys to remove endo, and then 10 yrs later had a partial hysterectamy, now 4 yrs later I have severe pain in abdominal area, which is cyst on my ovary 3.6 cm I am told to have surgery next week to remove both ovaries and scar tissue, my concern is to have to take estrogen for the rest of my life, this is scary anyone tat went through simular problems please let me know how it turned out. I am only 42, do you think this is due to my previous endometriosis. thanks for any replies, hope all is doing well.


Tiara
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3/07/2004
00:10:34
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Hi, I just wanted to say that a hysterectomy is not a cure for endometriosis. The only thing that puts it in 'remission' permenantly is when you go into menopause with no hormone replacement. There are many women that have total hysterecomies in hopes of ridding themselves of the disease only to go on estrogen replacement and have adhesions form on their colon or bladder. Although there are some women that have hysterectomies and they never have any more problems ....but it's not a sure thing. In any case you should always try and get 2nd or 3rd opinions before you undergo anything. Sometimes you can have laproscopic surgery done to remove as much of the endo as possible and then take birth control pills continuously for 4 months at a time. At the very least that will give you more time to check out other options. Hope this helps......Later!!

Tiara


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