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Endometriosis... huh?

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Old 11-14-2006, 12:08 PM   #1
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Mudiefeets HB User
Unhappy Endometriosis... huh?

I am 26 years old and have been plagued by many sypmtoms over the last year and a 1/2. My doctor has done a number of tests to try and find the cause- bowel, stomach, liver, gallbladder, kidney, diaphragm, etc. We have found nothing and he recently sent me to a gynecologist thinking it may be something going on with my reproductive organs. The gynecologist says it sounds as though I may have endometriosis. There was an ultrasound done on that area about a year ago and it showed all my repoductive organs as normal but the gyn says that it wouldn't necessarily show on the ultrasound if endometriosis is what I have. Does this sound right?

I have no experience with endometriosis and am not really even sure what it is - she tried to explain it but it's still something totally foreign to me. She said the only way to know for sure is through laproscopy which would be rather costly as I don't have insurance. I am apprehensive about paying a good chunk of money on something I may or may not have. All I know is I want to feel better!

Has anyone been diagnosed with endometriosis? If so, what were your symptoms and how did you find out that was in fact what you had?

Any advice is VERY much appreciated...

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Old 11-14-2006, 06:07 PM   #2
Join Date: Nov 2006
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Nicliz HB User
Re: Endometriosis... huh?


I have had endometriosis for the last 7 years i got diagnosed 5 years ago

Unfortunately the only way for a definate diagnosis of endo is via a laparoscopy. I am assuming you live in the US as you mentioned that you dont have insurance and it would be costly. I apologise if i assume wrongly. I would suggest have a laparoscopy to check for endo as its something that if it goes undetected and untreated for some time can cause a lot more problems such as infertility. The one thing i will say about endo is that it is not life threatening. Having endometriosis is very debilitating and does require treatment not only via drugs but usually via surgery aswell. It takes on average 9 years for a woman to be diagnosed with endometriosis (if my memory serves me correctly, it may be 5 i cant quite remember) the reason for this is doctors like to tell us that we have IBS and refuse to send us to a gynae just for period pains as they so like to put it so the fact that you have a gynae who is willing to do a laparoscopy is brilliant. I would honestly take the chance whilst i could as women do spend literally years trying to get even their doctors to take them seriously.

Symptoms i had ..

*Constant pain in my lower abdomen and my back
*I wasnt having periods but a very heavy period or irregular periods are another symptom
*I couldnt sleep no matter how hard i tried, i just couldnt hold down a proper pattern, my body let me sleep when i was so tired it was ridiculous that was all
*Pain when i went to the toilet
*Painful Intercourse

*Unexplained infertility is something i didnt experience at the time of diagnosis but is another factor with endometriosis

Endometriosis is unique to every woman or girl.

I hope that this might have helped you somehow and i apologise if it makes no sense

Nic xxx
"Another ditch in the road, you keep moving! Another stop sign, you keep moving on!"

Old 11-14-2006, 07:25 PM   #3
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emilycaitlin HB User
Re: Endometriosis... huh?

Hi, I have endo, 29 yrs old and what your gyn says is right-ultrasound can't diagnose. Having no insurance a lap would be costly but you would know for sure and then you would be able to have appropriate treatment. I agree with everything the above poster said. My symptoms are extremely painful periods, lower back and leg pain (my dr calls this referred pain), infertility, nausea and loss of appetite. The pain that comes with my period was so severe before I got treatment I would usually end up crying on the floor because there was no way to be comfortable. A woman can have alot of pain and mild endo or the opposite, very little pain and severe endo. There is alot they can do in the way of symptom relief and to help with infertility. I'm currently taking infertiliy treatments, hoping very much they will work out. If there's any way you can get insurance in the near future it would likely pay for most, if not all, of the lap charges. I've been without insurance before though and know what it's like-it stinks! Best of luck to you, I hope everything works out. Take care em

Old 11-14-2006, 07:35 PM   #4
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babyluv45 HB User
Re: Endometriosis... huh?

I am only 18 years old and was diagnosed with endometriosis at 16 via a laparoscopy. Before being diagnosed I had multiple ultrasounds and the endo never showed up. I know that happens a lot. My main symptom was almost constant severe pelvic pain and when I got my period it would last for 2 weeks or sometimes even more.

Old 11-15-2006, 10:10 AM   #5
Join Date: Nov 2006
Posts: 9
Nicliz HB User
Re: Endometriosis... huh?

babyluv45 it is very rare to find somoene my age that has endometriosis i am only 19 myself. In a strange way it is a comfort I hope that your endo isnt to severe

Take care

Nic xxx
"Another ditch in the road, you keep moving! Another stop sign, you keep moving on!"

Old 11-15-2006, 10:11 PM   #6
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Mudiefeets HB User
Re: Endometriosis... huh?

I've been reading and almost all the stuff I've come across says you get intense pain with periods. I have not had a period for over a year , due to reasons we can't seem to pinpoint either. So they didn't think it could be endom in the beginning cause amenorrhea usually doesn't accompany it... if anything, extra heavy periods do. To try to get my menses restarted, the gyn gave me medroxyprogesterone (sp?) , a 10 day pill that when stopped brings your period on. That worked but if I don't take them again , my menses would stay stopped. When I have had my period after stopping the progesterone, there is no extra pain though.

I had intense bloating today and pain under my right rib. I am so tired of this.

I guess I should just get the laproscopy, even if it's costly. If you have insurance, does it generally cover laproscopy? And anyways, how do they do it - what does the procedure entail?

Old 11-26-2006, 10:06 AM   #7
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da_brown3 HB User
Re: Endometriosis... huh?

You may want to check with the hospital your doctor is affiliated with to see if they have a program for poor relief. It is a program that will pay hospital charges for people without insurance and it's guidelines are usually fairly high. I know I've had to use it in the past before I was able to get insurance. This way you could get your laproscopy without worrying so much about the cost. Good luck.
Ann Brown

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