Endometriosis

[ebrbetty]

hi, I was just wondering what the symptoms are? I was told years ago I have this, the OB/GYN just mentioned it once and said nothing more.

everything I read about it says the pain is just before you get your period and during, but I thought it can cause "stomach" pain all the time?

any info would help..oh ya, is it true it can only be DX by surgery?

thanks

[Canadian Karen]

I was diagnosed around 20 years of age with endo. Extremely painful periods and pain during intercourse where my main symptoms. It is diagnosed after a doctor does a procedure called a laparoscopy, which two very small incisions are made (during surgery), one in your belly button and one about 3 inches below. They go in and "view" to see what it looks like.

I think it is incredibly ironic however, that after being diagnosed at 20 (apparently it was pretty bad), I was told I would have a 50/50 chance of ever being able to conceive a child..... HA! Showed them, didn't I!!!!

Hugs.

Karen

[Guest nini]

I had the laparascopy in my mid twenties for endo and while they were in their they used lasers to "clean it up" but they said it would grow back... the pain is unbearable sometimes. I did have Dr's tell me I wouldn't be able to have children, but I do have my daughter so NEENER NEENER to those Dr's!

The symptoms for me were extremely painful cramps that would literally knock me to the floor... some days the pain was so bad I would lay on the couch all day with hot packs on my belly... right before my period is the worst... (well, about a week before) I can tell it's coming back and I don't want to have the laparoscopy with laser again, but I may have to...

[Deej]

I had it but also had undiagnosed Celiac so I am at a loss to say which symptoms were caused by what. It's a tricky thing.

[natalunia]

I was diagnosed in February 1998. I had laser ablation of endometrial implants, but they have grown back. I had it all over my uterus and ovaries, but also had it on my colon and bladder. When it is on your bladder you tend to need to pee all the time during your period, and sometimes have blood in urine samples at that time. When it is on your colon, it can cause diarrhea, colon cramps, and a weird pain in the lower back/buttocks area. I had bad cramps from my very first period. I would have a 9 to 14 day period, and it would be heavy for 7 to 9 of those days. The laparoscopic surgery was not that bad.

[cultureslayer]

If you don't mine me asking, how'd you get diagnosed? I'm tired of the generic vicodin and BC fix all from my gyno (I've had bad side effects from everything I've tried: cramping, continual spotting, and even heart palps).

I really believe the retrograde flow with immune involvement theory is the most plausible, but finding someone that would be willing to tie my tubes or do a hysterectomy to keep it from getting worse will probably be impossible since I haven't had kids (and would never want them, but they obviously think that's all I'm good for since they refuse to try to end my pain).

[Mandy F.]

I had hellish periods from the very beginning. I used to pass out in the shower from pain on the first day of my period almost every month through high school. I had EXTREMELY hevy bleeding (went thru 9 OB Ultra tampons in one school day and the doc said "eh, it's a little heavy.") I dropped out of college in November 2001 after the cramps and fatigue got too much for me to handle (at this point, it was still all in my head or I was faking it according to docs).

I was diagnosed in January of 2003 at 19. I was working 12 hour days at a fast food restraunt and kept getting more and more pain each month during the PMS week. Then as the months went on, I started gettin pain after my periods, then all month long, when I lifted things, when I bent over, etc. I did get some major stomach pains with the cramps (I'm wondering if maybe the endo doesn't make the Celiac flare or vice versa, I didn't know about Celiac back then) to the point that taking a drink of warm tea would cause me to curl up in a fetal position. I would bloat up really bad (went from 32" waist to 36" during periods!) I think I went to the ER 5 times in 3 months thinking I had a ruptured ovarian cyst or something... Ultimately, the daily pain traveled down my legs and into my back to the point that by late November 2002, I couldn't stand for more than about 20 minutes and was popping vicodan, darvocet, percocet, and vioxx like candy. (I miss Vioxx... it was the only thing that worked after the surgery...) My family doc didn't take my complaints seriously when I was going through all of this. She checked for gall stones and STDs but ignored my request to have a referral to a gyno. When I finally got in to see a gyno, he diagnosed me in 5 minutes based on my symptoms but said he'd need to do surgery to confirm and to make me feel better (I put it off for 3 months because I had no insurance...)

Surgery is the only way to get a difinitive diagnosis. My sister had very similar symptoms and was told by her gyno that she had endo, but she was checked last year and doesn't have it.

I took a while to heal after my first laporoscopy (but I think I'm in the exception) but once I was fully healed, I never felt better in my life! The constant pain, stomach cramps, and severe bloating went away and even my periods were completely normal! I had the surgery done again last year because I started to see the same pattern that I origionally went through.

If you have the surgery, definetly ask for recommendations. Maybe even try to contact a support group in your area to find out any docs you should avoid. The doc I had for my second surgery left me with a little bit of nerve damage...

Sorry this is so long... I just wanted to give you a scope on some of the symptoms that my docs ignored. I've also heard about some rare cases where endometriomas (the little implants that cause the pain) get into the blood stream and out into other parts of the body such as the lungs or brain.

I've got a link somewhere to a really good support group that has TONS of info. When I find it, I'll post it.

[Mandy F.]

Here's the link... hope it's helpful.

Open Original Shared Link

[ms-sillyak-screwed]

I had it. Really [really] bad.

Painful periods from Hell!!! ...I would passout many times, cry-all-night-from-pain, get migraine every month; before. during. or after my period without fail. I lived on pain medication.

Took the 'PILL" it helped lessen the pain.

It all stopped when I had a hysterectomy at a young age. Then took HRT. When I stopped HRT after 10 yrs and was in a extremely stressfull enviroment it triggered celiac disease for me.

I know your pain!

[Firegirl43]

So dumb question, They think that I have it , I m not too happy. ( duh) is this all connected or am I just reaching

[Smunkeemom]

I was diagnosed, we never did anything about it, the doctor was kinda "live with it" so I have been. I didn't know you could do anything about it.

I am mega sick and in pain the day before and during my period.

I have been so physically ill before that people called 911, only to get to the hospital get some pain meds, where I could explain to the doctor what was going on and get a "grow up and deal with it" and get sent home with Lortabs.

[jennyj]

I also had it, painful periods, heavy flow, mood swings. After having a period that began the day BEFORE

Thanksgiving one year and ending two days before VALENTINES day the next year, my doctor at the time said "There may be a problem, but I don't think it is anything to worry about, I changed doctors and within a few months had a hysterectomy. It was the best thing I ever did, besides dropping the doc.

[DILIROTH]

I also had an extremely heavy flow and very painful periods from the onset! Everyone thought I was faking it or just had a low pain threshold. It wasnt until at 19 I was rushed to the hospital with a cyst on my ovaries that was bleeding that they discovered I had severe endometriosis. I tried all the medications and treatements but none of them worked for me. I had to have a labroscopy every two years which made me feel wonderful for about 6 months and then the pain would gradually begin increasing. Finally at age 30 after 5 surgeries and the endo being on my colon and also attaching my bladder to my uterus they had to do a hysterectomy. Although I still take HR the surgery was so worth getting rid of the pain.

I started getting sick again in my early 30's and no one could figure out what was wrong with me for 6 years until a fantastic Dr did a blood test for Celiac - and Voila!

I happen to believe that the Celiac was somehow related to the endo but I cant be certain.

Unfortunately, you cant have a blood test to determine if you have endometriosis and the laproscopy, although is considered a quick, out patient service - its still surgery.

[JodiC]

I was also diagnosed after the birth of my twins. I demanded a complete hystorectomy b/c I was done having kids. Anyway 6 years later the doc thought I should be on HRT, so now I am sitting here with endo flaring up allover again. You never forget that pain. HRT is not worth it.

[Tangerine]

I was just recently diagnosed after years of weird periods.

I always used to have heavy periods and when i was 16 they got so bad I would sleep on the floor of my bathroom so I could throw up, plus the cold floor made me feel better. I would also get to school and be nauseated all day . I finally went to see my doctor and he put me on birth control. What a mistake that was!!! I have been on-and-off it about three times in about 2 1/2 years worth of time. It made the pain go away, but I had very short periods or no period, plus it made me moody. I was never moody before, even with all the pain.

I have been off of them for nearly three years, but it took me a year to get periods again. That scared the crap out of me. Then my periods would come some months and not others, and this past year the pain came back, along with the fact that i kept getting cysts (that i though were causing pain, but maybe it was jusy my endo). Then i started to get a dull ache in my lower pelvis in the middle of my cycle until the end of my period. And then the pain moved into my groin and down my legs. It also felt like something was "hitting nerves" down in my pelvis as when I would walk or exercise it would hurt so much I'd often aviod it.

I'm very glad i insisted on getting a laparsocpy. They didn't find too much, just two spots on each side of my pelvis. They burned it off with a lazer, but it can come back. My Gyno said that even people with a little endo it can be very painful, and some women with a lot of endo have no pain at all.

They are trying to get me to take birth control again. I promised myself i would never go back on them. I'm going to start taking a suppliment called DIM-13C. I've read that you need to take 200mg a day for the best effectiveness. It helps rid you body of excess estrongen. I'm also looking into natural pergesterone (sp) cream. It also helps to limit the intake of foods that contain a lot of estrogen, and eat foods which block estrogen.

[skbird]

I have not been diagnosed with it, but I have really bad periods. I have used natural progesterone cream and it has helped - then I talked with my gyno and she prescribed me natural progesterone pills (Prometrium). It comes in 100mg and 200 mg - it's the same sort of progesterone in the creams, but suspended in peanut oil (so, if allergic to peanuts, it's a no-go). I take two a night starting day 15 of my cycle, through to my period and it has helped a lot. Thing is with oral progesterone, it takes a lot more than you need in cream or your body is supposed to make (I think I read/my doc told me your body is supposed to make 40mg a day). Only 10-20% of the progesterone in the natural form makes it past your liver, so 200mg makes 20-40mg that I'm getting.

Interestingly, progestin, which is synthetic (in Birth Control Pills, etc), can be given in much smaller doses because it is *not* natural to your body and it doesn't get filtered out the way the natural stuff does. Also, progestin is linked with a lot of side-effects. I had problems with nausea, etc, when on the BCP, but no problems at all with the natural progesterone pills. Two months ago I tried taking only one a night (100mg) and I had the WORST period in about 6 months, so I'm solidly on 2 a night now.

I was just thinking today, wow, my period is days away, and my breasts don't hurt. Another plus.

Stephanie