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Old 07-24-2005, 05:36 AM   #1
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ebaxter21 HB User
Endometriosis questions

Hello there. I recently posted on here that I had gone to the doctor and she said that I could possibly have endo. She did a whole slew of tests on me and I just recently got the results back. Everything was negative! Which is really really great, but she also told me that if nothing is wrong in those tests then that gives me greater chance to have Endo.

I was wondering, what do I do now. I am on continuous birth control, so that I don't have periods. However, I have not had children yet. I want to beable to have children. I don't know if I should just not have the surgery b/c most likely its going to come back eventually. You see..I want to have this surgery just to know 100% for sure that I have endo, and if I do then how bad it is and if it is blocking anything important for having children. Am I wrong to want this, I have seen so many people just not have the surgery b/c in the long run its not going to cure it. But does anyone ever have it just to make sure they are right? I don't want to continuosly have no periods if for some reason I don't have endo.

I know it sounds like I still have not accepted this, which I guess I really haven't. But I just want to make suree....

Also, I recently told my father about what has been going on and he was so worried about me that he called my mother {removed} and thinks nothing is a big deal. She then called me and yelled at me and told me that every woman in the world bascially has endo and it can't hurt you. I know otherwise, but I also want to be taken under her wing and actually feel like she cares. Because she is {removed} she thinks nothing is ever "bad" but this is bad to me. She doesn't support surgery, and she has told my dad that there is no reason to "care" or worry about me. Is there anything I can tell her that might make her see that even though it is prevelant that it still can be serious????

Thanks so much!
-Erin

Last edited by Modinatrix21; 07-24-2005 at 05:41 AM. Reason: Read posting rules.

 
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Old 07-24-2005, 01:28 PM   #2
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FairyMagick HB User
Re: Endometriosis questions

Hi,
Sorry to hear you are having a hard time with your Mother. Just wanted to let you know there is no test a DR can give you, to tell you that you most likely have Endo or not. Unless you have the surgery. I would get a second opinion. I have Endo. I was tested (blood, ultrasounds mri etc) with everything other than the surgery for over a year and no one was able to say if I had it or not until the surgery. Sorry to say this but your Mother is wrong. Not all woman have Endo. You could tell your Mother that not only is Endo very painful it can also cause infertility. It has ruined quality of life for me in a lot of ways. As it does many woman. There are different degrees of Endo from mild to server. I had a sugery to remove it I'm still waiting to see how successful l it will be. There isn't a cure for Endo but the surgery does help a lot of woman. The earlier you get diagnosed the better. Hope this was helpful. Good luck to you.

Last edited by FairyMagick; 07-24-2005 at 01:35 PM.

 
Old 07-24-2005, 08:45 PM   #3
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ladybug8372 HB User
Re: Endometriosis questions

I am agreeing with other poster. not every woman has endo. but.....i am one of the unfortunate ones...i have had it for 12 years, been through 3 lap surgeries and other treatments. yes, it does interfere with fertility, so if you find that you do have it, and that you do want kids, I would not hold off. I am lucky that I had my 2 girls before the endo started....they are ages 11 and 14 years. however....dh and i have not used any protection in 9 years.....no pregnancies has occurred in those 9 years. so, if you know that you want kids, i really would not put it off. i wanted a 3rd child...but doesnt look like it will ever happen. the only way to find out if you have it and how bad is through laparoscopy. it is not wrong to want the surgery to find out if you have it, or how bad. they can burn out what they find. odds are that it will come back....but it will give you relief for a while..unless there is some lurking in there that cant be seen, therefore not removed. (which is my case, as I have always continued with the suffering right after surgery, and my GYN explained to me that it does hide under organs, etc and if they cant see it, they cant remove it.) I would definitely have the surgery, that way you will know, and you will also have the chance to have anything fixed that is wrong....example....when i went in for my last lap..I had him to check my tubes to make sure there was no blockage....AND he also discovered that my right ovary had adhered itself to the uterus and because of that, the right ovary was not functioning. He repaired it and it is now functioning again. i hope this helps.

 
Old 07-25-2005, 03:15 PM   #4
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chocolate35 HB User
Re: Endometriosis questions

Sorry to hear about your problems I have been suspicious about having endo for 6 months now and have had complications with pain for over a year. I am trying to find a doctor who will do the surgery. If you have a doctor that is willing to do the surgery I would highly recommened going for it. The surgery can help with pain and also free you of some scar tissue so you can start on a "clean slate" instead of having the endo continue to build up. Like it was said earlier endo does affect fertility so having the surgery...which is a simple outpatient procedure...would definately be beneficial...even if it is just to find out if you have it or not.

Best of luck!
Chrys

 
Old 07-27-2005, 08:36 AM   #5
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fru5trated HB User
Re: Endometriosis questions

Erin,

I was diagnosed w/endo 13 years ago. To the best of my knowledge the ONLY way for it to be diagnosed is for the doc to actually see it - ie via an endoscopic surgery which is a small incision in you belly button so it doesn't leave a scar that would make you feel selfconcious.

PLEASE have the proceedure! {removed} It has lots of helpful info for you which you could share with your mother. Perhaps through education she'll be more supportive of you.

I can not stress enough that you should have the surgery. Without it your pain will increase and the likelyhood of your being able to conceive will diminish. By the time I was diagnosed I was in pain everyday, couldn't sit for more than a few minutes, couldn't wear a seat belt, and having a bowel movement was so painful I'd cry and nearly pass out. If you do have endo you DON'T want it to get this bad! The releif surgery provides me every 4 or 5 years is amazing!

I consider myself very blessed to have sucessfully conceived after my first surgery. Thankfully my beautiful girl made it to term. My husband and I haven't used birth control since the first surgery 13 years ago. We managed to conceive after one other surgery, but unfortunately miscarried - which believe it or not is how roughly 1/2 of all pregnancies end. SO, if you want children don't hesitate to act. I was told the time I'd be most likely to conceive would be following surgery - which has proven to be true.

There's one more thing to keep in mind. This all sounds so drastic and dramatic BUT (in my opinion) with a diagnosis you gain some control b/c knowledge is power. Freaking out and being stressed will work against you - making you more susectible to pain and making it more difficult for you to concieve. So please educate yourself not only about endo but on ways to relax and de-stress.

(I guess it's ironic for me to type that condering my screen name, eh? When I picked the name it really fit. But through educating myself about my present health issues and using a vareity of relaxation techniques I'm no longer feeling stressed all the time.)

I'm sending you some big mental hugs!

(no longer quite so) fru5trated

Last edited by Modinatrix21; 07-27-2005 at 09:31 AM. Reason: Read posting rules. No websites.

 
Old 07-28-2005, 11:34 PM   #6
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sonic HB User
Re: Endometriosis questions

Hi Erin,,,You should have a diagnostic Lap to be sure ~~ Sorry, but your mother has a pretty {removed} outlook
Endo can really screw up a persons life..I should know.
Good luck~~~

Last edited by Modinatrix21; 07-29-2005 at 05:59 AM. Reason: Those types of words even if censored by yourself are not appropriate for the boards.

 
Old 07-31-2005, 09:36 PM   #7
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ebaxter21 HB User
Re: Endometriosis questions

Thank you all for your replies. Fru5trated...you really did help me figure out what to do. I was wondering when you said that 1/2 of pregnancies end in miscarriage, is that generally speaking or in women with endo?? And also...since you do seem to have so much infomation based on actual experience i pose this question to you...
I am currently 21 and still in college. Once I am out of college I will be hoping to have children (asap actually). Right now I am on continuous birth control which really limits the amount of pain that I have, which is so relieving. I was wondering if you would recommend waiting to have the surgery until I am ready to have children. It seems sort of pointless right now (besides knowing for sure) because I've read that you're most likely to get pregnant right after the surgery. And since my pain is being kept in check would it be alright to wait??
Thank you so much for your insight!!
-Erin

 
Old 08-01-2005, 06:39 AM   #8
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ladybug8372 HB User
Re: Endometriosis questions

i personally wouldnt recommend waiting....because as time goes on...the more the endo accumulates and causes more problems.....its better to have it burned out as soon as you know you have it...that way what is there already cant cause anymore problems than it already has. while in there, they can find out if endo or anything else is blocking your tubes....which can cause problems in you getting pregnant. for the best answer to this question..i would personally recommend speaking to your GYN about this and get their input on it.

 
Old 10-25-2005, 04:44 PM   #9
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bluearmyklt HB User
Re: Endometriosis questions

Hiya - I have been having various problems for 10 years and for 10 years I have been going backwards and forwards to the doctors and they said there was nothing wrong with me. I had blood tests, scans the lot and still nothing. In the end I asked to be referred to the gynacologist ad eventually got to see a specialist. He told me I need a Laparoscopy as this was the only way to see what is going on inside. I had this surgery done last Monday and they told me I had edometriosis. I have to wait to see the specialist again on Friday to see what they say. Keep your chin up ad dont worry - go back to the doctors and ask to be referred - its your right to ask! Good luck x

 
Old 10-26-2005, 09:36 AM   #10
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tina76 HB User
Re: Endometriosis questions

Hi there, I am new to this board as well. I am 29 and was diagnosed with endo 5 years ago so I was pretty young as well. The only way they were able to properly diagnose me was to go in thru my belly button as someone else mentioned and saw it in there, then they scraped off what they could see. It does grow back and I have held off on any further scrapings because the more you have the more it affects your fertility and don't have kids yet. But you should definitely do the first surgery to at least diagnose it. And as for all women having endo... the thing my doctor told me is that a lot of women have it and never realize. However, some women could have a whole bunch of it growing and have zero symptoms ever, while others can have a tiny little bit in there and be in massive pain. It just depends on how it affects YOU. My endo has severely affected my life. After years of guinea-pigging meds that might help, they now just treat the pain. You need to know what you are dealing with before you can be treated properly etc... I hope it all works out for you!

 
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