endometriosis, any body here have it?

[jasmine]

Hope I spelled it right.

I've heard that you really don't know if you have it, only if you have a surgery can they truely find that out. But you would basically know if you have from the symptoms

I had my c-section Back in 9/07, and they found 2 cysts on my left falopean tube{spelling??**, and it came back as endometriosis, which to my understanding is basicall iron build up. I always wondered why I had such painful miserable periods, and was totally wacked out cranky and moody. I also heard that the only way to cure those painful symptoms was to get on the birth control pill, which I totally believe because I did and it is so much better, or to have a hysterectomy. I did notice a difference when I had the cysts removed, it cured alot of the pain, but now I can notice it coming back, so I guess I will go in and get on the pill again.

I also heard that it can lead up to having trouble with pregnancy, miscarrages....

I have tried to find some info. about it, but am not satisfied with little I have found.

Does anyone know more?

[smileyeyes]

I have it and it has cause sever scar tissue on my tubes. I am unable to get pg becasue of it. I have alot of resources about it. But unfortunatly I am at work right now and have none of my websites here. and they have a stupid firewall that won't let me look at the sites to see if they are the right ones. PM me your email address and I will email you everything I have and know. I can't take BC because of migraines so I have the most painful periods in the world.

Windi

[atprm]

I have it, and have had it since 1992 --

it has caused the inability to get pregnant, extremely PAINFUL cycles (the the point I can barely walk), abnormal cycles, and beyond extremely painful intercourse.

I have cysts on both sides of the fallopian tubes -- the cure is a full hysterectomy (which was not a consideration 17 years ago -- because of the toss into menopause...now, I am so close to menopause -- with starting signs already...that I wouldn't care. LOL)

[justme23]

They can find it w/out doing surgery. They did an EXTREMELY painful test on me (they blew up a balloon IN my fallopian tube while having me lay under an xray machine looking for it). Seriously... I've had kidney stones and I would rather have one once a month than EVER have that test again.

I'm sure I'll get yelled at for telling you that... but anyways... I have not been able to get pregnant and that's why they tested me for it.

I wish you luck... there are many different things it could be and I hope they figure it out for you!

[jasmine]

I have it, and have had it since 1992 --

it has caused the inability to get pregnant, extremely PAINFUL cycles (the the point I can barely walk), abnormal cycles, and beyond extremely painful intercourse.

I have cysts on both sides of the fallopian tubes -- the cure is a full hysterectomy (which was not a consideration 17 years ago -- because of the toss into menopause...now, I am so close to menopause -- with starting signs already...that I wouldn't care. LOL)


I always wondered why sex was much more enjoyable after drinking a little....:drunk:lol Sex was extremely painful for me also untill they removed those 2 cysts, but I can tell it's coming back again.

[fleabones3]

I had it.. had a hysterectomy when I was 30. I was a smoker so couldnt take the pill. They gave me fake BC and I spotted. SInce I was done having kids I said take it all out lol. I had a ultrasound done and it showed NOTHING. When the dr went in, he found a tumor on one ovary, a peach sized cyst on the other, and my uterus was enlarged and full of blood, and there was endometriosis EVERYWHERE. and none of that showed up on ultrasound.

[BigLyd1]

Wow, revelation. So that's why I had those awful miscarriages. :cry Anyhow, the way my doctor treated me was to first induce menopause by giving me some sort of nasal spray. So years ago on my honemoon I was having hot flashes. And then I had to have one tube and ovary removed. At least it took care of the endometriosis.

[jasmine]

I had it.. had a hysterectomy when I was 30. I was a smoker so couldnt take the pill. They gave me fake BC and I spotted. SInce I was done having kids I said take it all out lol. I had a ultrasound done and it showed NOTHING. When the dr went in, he found a tumor on one ovary, a peach sized cyst on the other, and my uterus was enlarged and full of blood, and there was endometriosis EVERYWHERE. and none of that showed up on ultrasound.


WOW, I am so sorry to hear that, yet some relieved that I found women going through the same thing. Does anyone know what causes this or where it comes from? Men don't understand, he thinks it's just another one of those "woman" problems. I told him it's more than that, basically because he wants another child. The doctor that put me back together said I could, but me, I am personally scared to have another miscarrage. I only had one, but that's enough to last a life time for me. Maybe the chances are lower for me since I had those to cysts removed just almost 2 years ago. I don't know though, for now hubby looses, I'm getting on the pill next week. I know from experience before I got pregnant that it relieved my pain tremendously.

[meltodd69]

I had surgery a few years back and they removed it. Sex was very painful. Haven't had any problems since (knock on wood).
Now a co-worker had it very bad. It was growing up into her body. Taking over everything. She almost died!
I never did quite understand it. I am just glad the doctor could help.

[speedygirl]

WOW, I am so sorry to hear that, yet some relieved that I found women going through the same thing. Does anyone know what causes this or where it comes from? Men don't understand, he thinks it's just another one of those "woman" problems. I told him it's more than that, basically because he wants another child. The doctor that put me back together said I could, but me, I am personally scared to have another miscarrage. I only had one, but that's enough to last a life time for me. Maybe the chances are lower for me since I had those to cysts removed just almost 2 years ago. I don't know though, for now hubby looses, I'm getting on the pill next week. I know from experience before I got pregnant that it relieved my pain tremendously.

There's no definitive cause. One theory is that pieces of the endometrium (the tissue that you shed during your period) back up into your fallopian tubes and out into other areas. It attaches itself to wherever it lands and continues to grow. It often bleeds and swells which causes severe pain. We've had patients that have had the tissue attach in unusual places. It's also believed to be hereditary. There is a lot that's unknown about the real causes. I recently read in an ACOG journal that there may be a specific enzyme that causes it.
There are numerous treatments that we give our patients. Far too may to list but Lupron Depot is the most frequent one we use after BCP therapy.
Laparoscopy is the tool used to correctly diagnose. It does not show up on a pelvic exam (other then pain perhaps) . Ultrasound, CT and MRI show it to some extent but not as well as a laparoscopy.
I work in the field and know quite a bit but every person's causes and symptoms are different and I'd hate to lead you in the direction that wasn't right for you.

justme23
They can find it w/out doing surgery. They did an EXTREMELY painful test on me (they blew up a balloon IN my fallopian tube while having me lay under an xray machine looking for it). That sounds as if you had a hysterosalpingogram. (HSG)

Sorry you're going through this. I hope your doctor finds an appropriate solution to your problem asap.

[Kimberly61]

I have had it since I was very young...I was not able to have any children due to it, so those that have children and still have it, your very lucky! I have read that it can even go to your kidney's, lungs and your brain...pretty scary stuff! It actually effects a lot of women with out them ever knowing they have it............my symptoms are pretty mild...I dont get periods that often, its actually going on a year now for me since my last one but every month that I am suppose to get one I get the symptoms of having my period without actually having it so I lose either way lol.....I get very painful pelvic pain on occassion and I believe it is on one of my kidney's because for the past year or so I will wake in the night hurting so bad to the point of throwing up and it hurts around my kidney area.....I dont have insurance so I havent been treated yet so I just deal with the pain.

[tammy77]

I have had it since I was very young...I was not able to have any children due to it, so those that have children and still have it, your very lucky! I have read that it can even go to your kidney's, lungs and your brain...pretty scary stuff! It actually effects a lot of women with out them ever knowing they have it............my symptoms are pretty mild...I dont get periods that often, its actually going on a year now for me since my last one but every month that I am suppose to get one I get the symptoms of having my period without actually having it so I lose either way lol.....I get very painful pelvic pain on occassion and I believe it is on one of my kidney's because for the past year or so I will wake in the night hurting so bad to the point of throwing up and it hurts around my kidney area.....I dont have insurance so I havent been treated yet so I just deal with the pain.

Just so you know its not healthy to go that long without a period.I found that out while going through fertility treatment.

I dont have endo but I do have PCOS and know how painful cysts can be.

[Kimberly61]

I know its not healthy but every doc I have ever been to and there have been A LOT have all said the same thing that it is not uncommon and to not worry about it....I have been to fertility specialist, had all the test, ultra sounds etc in the past and not one doctor wanted to really help me....and since we dont have insurance I cant afford to go be put through all that again.

[buglebe]

I had endometriosis. My understanding was that it caused difficulty getting pregnant but not staying pregnant. I have 3 children. I honestly didn't know I had endometriosis until I had a hysterectomy. My dr said didn't you have lots of pain with your periods and even at other times and I said yes of course I did but I also had crohns so I thought it was that. I was full of endometrioses. I have heard the symptoms go away during pregnancy and that was true for me and also for my niece. The female hormones feed the endometrioses and they can break and spread anywhere in your abdomen. If you have a hysterectomy but keep your ovaries, you can still have pain from endometrioses.