Group?

Support for anyone who has been diagnosed with endometriosis, or thinks they may have endo.

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Group?

Postby AnnaJuly » Mon Jun 25, 2012 12:11 pm

Anyone with endo long term ttc? Want to make a buddy group here? I know this section is slow, but we can maybe make the thread a resource for people who join later. Dunno.
We can see how it goes. It does not need to be a thread we post on daily but we can add info and chat a bit.
Maybe it can be a sticky thread, errr do they do them here I do not even know :?
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Postby rachkluz » Wed Jul 11, 2012 5:39 am

Hey, ive got stage 4 endo and have been given 2-4 months to concieve....this is my first month and im 13 days late for my period but have taken 8 tests all negative :( its so hard to not get stressed out by it!x
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Postby AnnaJuly » Mon Jul 16, 2012 7:57 am

Hi,
I just want to wish you good luck :)
I do not think there is enough interest in a group.
Why did your doctor give you a time limit - what comes after the limit?
How did is month work out?
AJ
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Postby rachkluz » Mon Jul 16, 2012 8:07 am

hey,

I came on my period after 15 days :( but hey theres always next month. Ive been given 2-4 months because of the rate the endo is spreading, i had an op in december to remove some but alot of it has effected my bowel. My consultant is doing a full hysterectomy on me if im not able to concieve within the time limit.
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Postby AnnaJuly » Mon Jul 16, 2012 9:10 pm

I have it on my bowels as well. My is pretty extensive. Have you tried going gluten free? It is supposed to lessen inflamation. For many people there is a connection with Celiac and or other autoimmune conditions. Also, I think red raspberry leaf tea has helped me a lot. I take it AF till O. I notice an improvement in my periods with the tea.
Do you have it on your tubes or ovaries?
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Postby rachkluz » Tue Jul 17, 2012 2:47 am

I think ive tried every possible diet, treatment going and nothing seems to help. Only pregnancy, but then giving birth made the endo worse. My organs were mashed together and it was all over my tubes, overies, uterus etc but ive had 4 ops and they have managed to get rid of most of it...its just my bowels that they couldnt as id end up with a stoma because of where it is. Was puton a course of injections to try and temporarily stop my periods but they didnt work either so ive opted for full hysterectomy but id really like another child before i do. Have you had any ops yet?
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Postby AnnaJuly » Tue Jul 17, 2012 9:00 am

Just one operation, where they discovered my endo. I think docs have different ideas, they only excised half of one ovary, as it had a lot of endo on it. I have it outside my uterus, on my intestines, stomach, one tube and bladder etc.the surgeon thought it was too dangerous to remove most. The Gyno who was present advised me to go on bcp for at least six months, as she thought my ovaries may not recover from something stronger.
I do really feel gluten free helps a lot. I was told there was a lot of inflammation and adhesions. The adhesions will still be there but I really feel the inflammation has gone down. Endo is often found in common with a group of autoimmune conditions that include celiac disease. There is some evidence that inflammation from celiac, feeds endo. I think it is worth a try if you have not gone gluten free before. You have to be strict about it though.
Also in my case the untreated celiac lead to hypothyroidism, which led to heavier periods. Plus many miscarriages that were natural - no d&cs, so there were periods with a lot of heavy bleeding, all of which would have worsened the endo.
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Hello ladies

Postby tasmom1 » Wed Jul 25, 2012 12:38 pm

I too suffer from stage 4 endo'. I had surgery for it in 2007 and was able to conceive a few months later. I am scheduled to have surgery again on August 7th. Not looking forward to the procedure but I'm excited about the outcome. I'm sick of this pain :(
DD)16yrs
DS)12yrs
DS2) 4yrs -My first TTC baby~ BFp 2/26 @10/12dpo~ HCG- 2/27-24, 3/1- 137, 3/13- 20,416 :)
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thanks

Postby teacher30 » Sat Jul 28, 2012 12:31 pm

Hey ladies. It is good to see some people active on here. I wanted to get some opinions from you. I have all the signs of endo, but my RE didn't want to do a lap first. He said it was best to try other things first such as Clomid. I am also getting acupuncture from a different RE and he mentioned that a lap should be done before starting. Do you think I should get a second opinion? Am I wasting time on other treatments? Thanks for your help.
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Postby rachkluz » Sun Jul 29, 2012 2:18 am

heya,

my consultant said the only way of diagnosing endo is via a laproscopy so from that point of view then it may be worth getting a second opinion...at least then you know for sure what your treating. How true that is im not sure but i klnow i had every test under the sun and they didnt give a clear diagnosis it was only until they actually went in that thry could truly see what was going on.

x
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Postby tasmom1 » Thu Aug 16, 2012 11:17 pm

The only way to dx endo' is from the inside, so via laparoscopy. It's an outpatient procedure, so you're only in the hospital for hours, you go home the same day. And the recovery period is 2 weeks or less. But, the outcome is life long, and so worth it. that's my opinion. I just posted this somewhere else. Good luck :D
DD)16yrs
DS)12yrs
DS2) 4yrs -My first TTC baby~ BFp 2/26 @10/12dpo~ HCG- 2/27-24, 3/1- 137, 3/13- 20,416 :)
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Postby scharpster » Fri Sep 07, 2012 1:30 pm

Hi girls,

My RE suspects I have either endo/fibroids. The thing that throws me though is I have intense/mind numbing pain on the first day of my period only. I am fine the remainder of the cycle. I have immense pressure in my pelvis, and it feels like someone has taken a sharp brick and just standing on it/pushing on it on my lower belly. It is absolutely horrible. No amount of meds has made the pain any better. Does anyone else have this sort of pain? Some months I get it, other months I don't. It only started about a year ago. Dr suggested getting an hsg then a lap. I'd honestly like to skip the lap, but I don't know if I am able to bypass that step. Anyone know?
Me: 27
DH: 28
Actively TTC Baby #1 since July 2012. NT/NP for the past 5 years.
Chemical... 9/12/12 (4 weeks 6 days)
HSG performed on 11/13/12. Diagnosed with lean PCOS 11/13/12. DH poor SA.
BFP ALL NATURAL 1/20/13! *For this child we've prayed*
HCG 1/22 (100) 1/24 (202) 2/3 (8115.4)
1st U/S @ 7 weeks 2/15/13...formed beautifully and 172 bpm!
2nd Appt @ 11 weeks 3/15/13...167 bpm!
2nd U/S @ 12 weeks 3/22/13...Our sweet baby looks like a baby now!
IT'S A BOY! 5/13/13
Benjamin Reid born 9/27/13 at 39 weeks via c-section!

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Postby ambernicole8484 » Fri Sep 07, 2012 1:42 pm

A lap is the only way to confirm Endo :( I had a lap after my doc suspected and and it turned out I did have it. Luckily he was able to remove all that he could find.

I used to have horrible cramps on the 1st/2nd day of AF. The only thing that eased it off enough that I didn't feel like I was going to throw up was sitting in a tub full of hot water. When it come to that day I'd literally move into the bathroom. It's a good thing we have two because most of the time I wouldn't come out before 6 hours had passed. I also had really bad cramps/pains when I would have a BM during AF.
Me 30 ~ DH 31 ~ DD 11 - DS 12/5/14

BFP ~ 4/2/14 <3

10 years and 11 months after our sweet baby girl, our sweet baby boy arrived <3

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http://eatingmyselfpregnant.blogspot.com/
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Postby scharpster » Fri Sep 07, 2012 2:29 pm

Oops I meant to say skip the hsg - sorry, long day at work lol! hsg just seems painful and I know there is something going on in there, so id rather just be put under and have them do what needs to be done. I usually sit in the bathtub as well. I end up taking a lot of baths on day 1. I just always hope that my period comes while im at home instead of work. THere is nothing worse than dealing with the pain at work. Thanks for the response, Amber! Glad to know im not alone
Me: 27
DH: 28
Actively TTC Baby #1 since July 2012. NT/NP for the past 5 years.
Chemical... 9/12/12 (4 weeks 6 days)
HSG performed on 11/13/12. Diagnosed with lean PCOS 11/13/12. DH poor SA.
BFP ALL NATURAL 1/20/13! *For this child we've prayed*
HCG 1/22 (100) 1/24 (202) 2/3 (8115.4)
1st U/S @ 7 weeks 2/15/13...formed beautifully and 172 bpm!
2nd Appt @ 11 weeks 3/15/13...167 bpm!
2nd U/S @ 12 weeks 3/22/13...Our sweet baby looks like a baby now!
IT'S A BOY! 5/13/13
Benjamin Reid born 9/27/13 at 39 weeks via c-section!

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Postby ambernicole8484 » Fri Sep 07, 2012 2:32 pm

Could they possibly do the HSG during your lap?
Me 30 ~ DH 31 ~ DD 11 - DS 12/5/14

BFP ~ 4/2/14 <3

10 years and 11 months after our sweet baby girl, our sweet baby boy arrived <3

Blog <3
http://eatingmyselfpregnant.blogspot.com/
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