Re: Gastrointestinal Endometriosis/Arline

[Guest guest]

Hey Arline,I developed Endo at age 16. The pain got worse with each passing month. I would begin cramping severely a few hours before I would start...and I suffered from alternating bouts of constipation/diarrhea every time. At times, I would vomit, too. I cannot count the times I've rolled in the floor writhing from wicked pain! Back in the late 80's there wasn't much info available on Endo...so I went on the birth control pill to help with the cramps. It indeed worked -- it helped tremendously with the Endo, but it left me with vestibulodynia and impacted my hormones on many levels. I've had two laparoscopies for Endo. Neither one helped the pain at all, not even for a short time. My thoughts on any type of pelvic surgery now is to avoid it at all costs. That's just me, though. In the late 90's the Endo specialist and I suspected I had Endo in my nose. I wasn't on the pill at the

time and I would bleed from an area in the right side of my nose with each cycle.Endo is a terrible disease. I've read 'some' success stories from women who altered their diets and reduced symptoms. Taking Fish Oil (Omega 3's) have reduced the pain for some, too. Below is a link to the Endometriosis Association. They have probably the most informative info out there and include a broad spectrum of possible causes and treatments. I never tried Lupron or Danazol, etc. I've avoided a hysterectomy about 3 times now. http://www.endometriosisassn.org Take Care,ChelleBABB wrote: Hi Dee,I have lost your email on this subject but wanted torespond that I am not doubting the existence of

thiscondition--just wondering about it.Apparently one can have gastrointestinal endometriosis(as well as bladder and lung endometriosis?) withoutever having pelvic endometriosis. So I am just stillwondering about causes.When I was diagnosed with endometriosis a hundredyears ago I was told that being of the tender age of28 and not having had a pregnancy, that my body wastired of preparing for pregnancy (by the monthly bloodbuildup) and was just leaving all that blood in there.(or something like that). I was told that when I had ababy it would all go away. It did?Now I am wondering if gastrointestinal endo also hassomething to do with baby having or what. Just curiousmaking about all this--speculating out loud.The following site seems to have a lot of informationabout this if anybody is interested:http://www.biomedcentral.com/1471-230X/3/18Arline ------------------------------------**IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, Thanks for your cooperation! *****

[Guest guest]

Hi Chelle,

> I developed Endo at age 16. The pain got worse with

> each passing month. I would begin cramping severely

> a few hours before I would start...and I suffered

> from alternating bouts of constipation/diarrhea

> every time. At times, I would vomit, too. I cannot

> count the times I've rolled in the floor writhing

> from wicked pain! Back in the late 80's there wasn't

> much info available on Endo...so I went on the birth

> control pill to help with the cramps. It indeed

> worked -- it helped tremendously with the Endo, but

> it left me with vestibulodynia and impacted my

> hormones on many levels.

Your above paragraph sounds like me. It was really

horrible and I think mine started even earlier than

you say but I never went to doctors (some things never

change much). I did finally at age 28 when I was

missing work about four or five days a month and in so

much pain I knew I couldn't stand it any longer. He

gave me birth control pills but I couldn't take them

as I was nauseated all the time. I remember he also

gave me a huge bottle, 100 pills of darvon. Can you

imagine? Not today. They made me throw up so couldn't

take them either. I was told my uterus was tipped and

the endo would make it almost impossible to get

pregnant. Fortunately for me I got married soon after

that and got pregnant immediately. I never had another

cramp or any other problem here. Much later I had a

vaginal hysterectomy because of prolapses.

Your experience with endo (even in your nose) was

really something and still is I reckon. Poor you. Did

you have a pregnancy somewhere along the line?

Wish they could fix you.

Arline

>

> I've had two laparoscopies for Endo. Neither one

> helped the pain at all, not even for a short time.

> My thoughts on any type of pelvic surgery now is to

> avoid it at all costs. That's just me, though.

>

> In the late 90's the Endo specialist and I suspected

> I had Endo in my nose. I wasn't on the pill at the

> time and I would bleed from an area in the right

> side of my nose with each cycle.

>

> Endo is a terrible disease. I've read 'some'

> success stories from women who altered their diets

> and reduced symptoms. Taking Fish Oil (Omega 3's)

> have reduced the pain for some, too.

>

> Below is a link to the Endometriosis Association.

> They have probably the most informative info out

> there and include a broad spectrum of possible

> causes and treatments. I never tried Lupron or

> Danazol, etc. I've avoided a hysterectomy about 3

> times now.

>

> http://www.endometriosisassn.org

>

> Take Care,

> Chelle

>

>

>

>

>

>

>

> BABB pajaritomountain@...> wrote: Hi Dee,

>

> I have lost your email on this subject but wanted to

> respond that I am not doubting the existence of this

> condition--just wondering about it.

>

> Apparently one can have gastrointestinal

> endometriosis

> (as well as bladder and lung endometriosis?) without

> ever having pelvic endometriosis. So I am just still

> wondering about causes.

>

> When I was diagnosed with endometriosis a hundred

> years ago I was told that being of the tender age of

> 28 and not having had a pregnancy, that my body was

> tired of preparing for pregnancy (by the monthly

> blood

> buildup) and was just leaving all that blood in

> there.

> (or something like that). I was told that when I had

> a

> baby it would all go away. It did?

>

> Now I am wondering if gastrointestinal endo also has

> something to do with baby having or what. Just

> curious

> making about all this--speculating out loud.

>

> The following site seems to have a lot of

> information

> about this if anybody is interested:

>

> http://www.biomedcentral.com/1471-230X/3/18

>

> Arline

>

>

>

>

>

>

>

> ------------------------------------

>

> **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL

> POST,

> Thanks for your cooperation! **

>

> ***

[Guest guest]

Arline,I don't see how you made it that many years without help for the Endo pain! By the time I started on the pill I was missing school for the first 3 days of my cycle. My uterus was retroverted, too. I actually had surgery to correct that with my last laparoscopy ten years ago. It really helped with the painful sex. Many docs act like a retroverted uterus is nothing...but for some women it causes a lot of pain. Pain with sex (or collision coitus), more pain with periods, and can even make it hard to get pregnant. It is amazing you got pregnant so quickly. I came off the pill at 21. It took me two years to get pregnant. The Endo pain returned after that pregnancy. I got pregnant with my second son within two months of coming off the pill. That is why I think the suspension surgery really helped. Big difference between two years vs. two months to get pregnant.

My hormones have gone down hill every since my younger son was born (when I was 31) so I don't have Endo pain anymore (thank the Lord) & I no longer have those nosebleeds! But I have other pelvic woes I'm trying to get passed. Thanks for sharing...~ChelleBABB wrote: Hi Chelle,Your above paragraph sounds like me. It was reallyhorrible and I think mine started even earlier thanyou say but I never went to doctors (some things neverchange much). I did finally at age 28 when I wasmissing work about four or five days a month and in somuch pain I knew I couldn't stand it any longer. Hegave me birth control pills but I couldn't take themas I was nauseated all the time. I remember he alsogave me a huge bottle, 100 pills of darvon.

Can youimagine? Not today. They made me throw up so couldn'ttake them either. I was told my uterus was tipped andthe endo would make it almost impossible to getpregnant. Fortunately for me I got married soon afterthat and got pregnant immediately. I never had anothercramp or any other problem here. Much later I had avaginal hysterectomy because of prolapses.Your experience with endo (even in your nose) wasreally something and still is I reckon. Poor you. Didyou have a pregnancy somewhere along the line?Wish they could fix you.Arline > > I've had two laparoscopies for Endo. Neither one> helped the pain at all, not even for a short time. > My thoughts on any type of pelvic surgery now is to> avoid it at all costs. That's just me, though. > > In the late 90's the Endo specialist and I suspected> I had Endo in my nose. I wasn't on the pill at the> time

and I would bleed from an area in the right> side of my nose with each cycle.> > Endo is a terrible disease. I've read 'some'> success stories from women who altered their diets> and reduced symptoms. Taking Fish Oil (Omega 3's)> have reduced the pain for some, too. > > Below is a link to the Endometriosis Association. > They have probably the most informative info out> there and include a broad spectrum of possible> causes and treatments. I never tried Lupron or> Danazol, etc. I've avoided a hysterectomy about 3> times now. > > http://www.endometriosisassn.org > > Take Care,> Chelle> > > > > > > > BABB wrote: Hi Dee,> > I have lost your email on this subject but wanted to> respond that I am not doubting the existence of this>

condition--just wondering about it.> > Apparently one can have gastrointestinal> endometriosis> (as well as bladder and lung endometriosis?) without> ever having pelvic endometriosis. So I am just still> wondering about causes.> > When I was diagnosed with endometriosis a hundred> years ago I was told that being of the tender age of> 28 and not having had a pregnancy, that my body was> tired of preparing for pregnancy (by the monthly> blood> buildup) and was just leaving all that blood in> there.> (or something like that). I was told that when I had> a> baby it would all go away. It did?> > Now I am wondering if gastrointestinal endo also has> something to do with baby having or what. Just> curious> making about all this--speculating out loud.> > The following site seems to have a lot of>

information> about this if anybody is interested:> > http://www.biomedcentral.com/1471-230X/3/18> > Arline> > > > > > > > ------------------------------------> > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL> POST, > Thanks for your cooperation! **> > ***