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 Post subject: Endometriosis
PostPosted: Mon Jun 13, 2011 8:07 am 
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Okay, talk to me ladies.

Are these your symptoms? (from http://www.endo-resolved.com/symptoms.html)

Quote:
The most common symptoms of Endometriosis are:
Pain before and during periods
Pain with intercourse
General, chronic pelvic pain throughout the month
Low back pain
Heavy and/or irregular periods
Painful bowel movements, especially during menstruation
Painful urination during menstruation
Fatigue
Infertility
Diarrhoea or constipation

Other symptoms which are common with Endometriosis include:
Headaches
Low grade fevers
Depression
Hypoglycaemia (low blood sugar)
Anxiety
Susceptibility to infections, allergies


I'm 34 and my periods have been increasingly painful, heavy and clotty, and I can't get a decent gyno down here to save my life (but I keep trying). I have about 9 of the above symptoms, maybe 11. I thought that being pregnant made me gluten intolerant which I arrived at because quitting gluten made what I thought was my newly discovered IBS worse. I have a 1/2 sister (on my mom's side) who has endometriosis (and had a hysterectomy which I think seems severe, but whatever).

Thanks!! <3

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 Post subject: Re: Endometriosis
PostPosted: Mon Jun 13, 2011 11:28 am 
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I have "severe" endometriosis, and I'm pushing for a total hysterectomy with an oophorectomy. My symptoms before I had an exploratory surgery, to remove as much of the tissue and lesions as possible, were: chronic debilitating pain all over my abdomen, extremely heavy periods (I had one that lasted seven months, I would get clots the size of golf balls), extreme fatigue, headaches, depression, anxiety, and I continue to be really susceptible to infections. I also had to pee almost constantly, which I am told is because of all the pressure that was on my bladder. I am also told that I'm infertile, but I've never had occasion to find out for sure.

As far as after the surgery goes, I still have pain sometimes, and I still have ridiculous periods, but now they're very unpredictable and I have no idea when it's going to happen. There isn't any cure for endometriosis; the closest thing is a total hysterectomy with an oophorectomy, because significantly fewer people have the endometriosis grow back. With the surgery I had, it does grow back. I get injections of a drug that puts me into menopause, which is supposed to help slow the regrowth. My pain is less frequent since beginning my injections.

Another problem with endometriosis is that the only way to know for certain that you have endometriosis is to have an exploratory laparoscopy. The lesions and tissue won't show up on any type of scan.

appifanie, I am so sorry that you are going through this. If there is anything I can do to help you out, please let me know. *hugs*

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 Post subject: Re: Endometriosis
PostPosted: Mon Jun 13, 2011 11:35 am 
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thanks drake!!

i have extra horrible cramps today and I clot a lot, and big but never golf ball size big - ping pong balls sometimes. my period has changed a lot over the years but even lately has been reliably 28-29 days, but the month before last was 22 days and then 30-something before that. I do get the fatigue, headaches, depression and HEY! I too have to pee a LOT and when I have to go I really have to go. I read today that sometimes in a c-section they can goof up the endometrial tissues (or whatever)

I'll let you know drake, thanks!! And I hope things get better for you!!

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 Post subject: Re: Endometriosis
PostPosted: Mon Jun 13, 2011 11:39 am 
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My acupuncturist says she's had success with patients with endometriosis. So sorry you are dealing with this -I know its really painful. For many, BCP can help, though obvs there are some like DRC that aren't ... http://women.webmd.com/endometriosis/en ... t-overview

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 Post subject: Re: Endometriosis
PostPosted: Mon Jun 13, 2011 11:48 am 
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Not personal but my mother had some pretty severe endometriosis and and ended up getting a hysterectomy and says it's the best thing she's ever done and that she has no idea why she's put up with that she's put up with for the last 20 years. I know it does sound like an extreme way to go and the other options are worth trying, but don't rule it out - she did for too long and she regrets that.


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 Post subject: Re: Endometriosis
PostPosted: Mon Jun 13, 2011 12:31 pm 
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I am so sorry that you're dealing with this. I had the exploratory surgery and have a mild case. I wasn't a good patient and didn't rest after the surgery. Will never make that mistake again! It kicked my butt after a few days because I was doing too much running around.

I highly recommend acupuncture in general, if that's an option for you I'd try that before anything else.


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 Post subject: Endometriosis Help
PostPosted: Fri Jun 17, 2011 11:33 am 
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So I just had the surgery to confirm that I have Endometriosis and have finally stopped freaking out enough to start doing research. They burned out what they could and right now it's just a "mild" case. So I am temporarily avoiding hormones and I'd like to avoid ever having to go on them because of the side effects.
I also just read a blog where a former vegan started eating dairy again because of it. I'd sooner suffer than do that.

Are there alternative treatments or prophylactic measures I can take, in my diet for example? Reducing soy is my first guess? Herbs?

I know acupuncture is an option, I've done it for years for another issue I have but I lose my health insurance next year and can't afford outside payments.

Thanks in advance!

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 Post subject: Re: Endometriosis Help
PostPosted: Fri Jun 17, 2011 3:45 pm 
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I'm sorry I don't have something actually helpful to offer, dustbunnie, just sympathy. I was diagnosed with endometriosis a couple of years ago, after several years of infertility. Anyway, that's another issue. At my doctor's suggestion, I did 6 monthly Lupron injections, during which I was absolutely miserable. Dr. V told me it would take 4 weeks for that crepe to get out of my system, and it ended up being more like 4 months. So I feel for you, and I hope you find some answers that work for you. My endo is already coming back, and I refuse to do another round of Lupron, so at the moment, I'm just dealing. Good luck and good vibes.

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 Post subject: Re: Endometriosis Help
PostPosted: Fri Jun 17, 2011 3:48 pm 
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There is another thread here: viewtopic.php?f=25&t=11592&hilit=endometriosis

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 Post subject: Re: Endometriosis
PostPosted: Fri Jun 17, 2011 3:54 pm 
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Topics merged!

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 Post subject: Re: Endometriosis
PostPosted: Fri Jun 17, 2011 4:03 pm 
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I don't think the soy thing is at all obvious...

http://www.ncbi.nlm.nih.gov/pubmed/17474167
http://www.ncbi.nlm.nih.gov/pubmed/11528492
http://www.ncbi.nlm.nih.gov/pubmed/17559846
http://www.ncbi.nlm.nih.gov/pubmed/19388539
http://www.ncbi.nlm.nih.gov/pubmed/11294976

Diet in general...

http://www.ncbi.nlm.nih.gov/pubmed/20332166


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 Post subject: Re: Endometriosis
PostPosted: Fri Jun 17, 2011 8:02 pm 
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I have it. All of those symptoms and then some.
I also have PCOS...so they conflict in treatment. I've had two laproscopic laser surgeries to get rid of tissue. It's mostly on my bowels, bladder and possibly the kidneys (this is a new development my doctor and I are discussing)
Things that help: lots of tea. I don't know why but when I drink lots of tea (as I have not been) my periods are not so terrible.
Regular exercise (also-not been doing this)
Totally avoiding any and all sodium. (doesn't happen when I'm out in the sun all day at my job though...so again, oops)
I used to take a supplement that helped a lot but I stopped after my last lap and now can't find it or remember what is in it. I'll have to check my endo journal.

Everything I'm doing lately is all wrong so it's all my own fault. I know and accept this.

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 Post subject: Re: Endometriosis
PostPosted: Fri Jun 17, 2011 8:34 pm 
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Chipmunk- Very interesting! Thank you for all the links to the research. I'm still at a loss as to what to do though.
Do you have endometriosis? Or were you just being helpful? :)

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 Post subject: Re: Endometriosis
PostPosted: Fri Jun 17, 2011 8:38 pm 
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assilembob wrote:
I used to take a supplement that helped a lot but I stopped after my last lap and now can't find it or remember what is in it. I'll have to check my endo journal.



Let me know what the supplement is please, if you could?

Why avoid sodium? Just something that works for you? My sodium intake has been through the roof over the past two years, last year I ended up with kidney stones.
Oddly enough I had started exercising this winter but the pain got to be so bad I never got there regularly.

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 Post subject: Re: Endometriosis
PostPosted: Fri Jun 17, 2011 8:41 pm 
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Thanks for the support and good vibes Sunflower! I wish you good luck too. I'll make a post if I figure out anything that might help others.

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 Post subject: Re: Endometriosis Help
PostPosted: Mon Jun 20, 2011 11:43 am 
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Sunflower wrote:
I'm sorry I don't have something actually helpful to offer, dustbunnie, just sympathy. I was diagnosed with endometriosis a couple of years ago, after several years of infertility. Anyway, that's another issue. At my doctor's suggestion, I did 6 monthly Lupron injections, during which I was absolutely miserable. Dr. V told me it would take 4 weeks for that crepe to get out of my system, and it ended up being more like 4 months. So I feel for you, and I hope you find some answers that work for you. My endo is already coming back, and I refuse to do another round of Lupron, so at the moment, I'm just dealing. Good luck and good vibes.



I had Lupron injections too! They are the worst! It did give me some insight on what menopause will be like for me though. Yuck. Hot flashes will be avoided at all costs!


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 Post subject: Re: Endometriosis
PostPosted: Mon Jun 20, 2011 9:15 pm 
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Hmmm, I should really go see a gyno. Aside from the prone to infections/allergies and infertility (which I have no way of knowing at this point if I am), I have all the symptoms, and have since a few years after I started my period. I told my pediatrition years ago (period at 11, yay me :( ), but she didn't think it was anything to worry about. Probably figured I was 13 and just making things up.*sigh*


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 Post subject: Re: Endometriosis
PostPosted: Tue Jun 21, 2011 6:47 am 
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Simply_Love wrote:
Hmmm, I should really go see a gyno. Aside from the prone to infections/allergies and infertility (which I have no way of knowing at this point if I am), I have all the symptoms, and have since a few years after I started my period. I told my pediatrition years ago (period at 11, yay me :( ), but she didn't think it was anything to worry about. Probably figured I was 13 and just making things up.*sigh*


That's sad! Can you get a new gyno? Also, I was 10 when I got mine, so I am feeling your pain.

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 Post subject: Re: Endometriosis
PostPosted: Tue Jun 21, 2011 12:58 pm 
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[quote="appifanieThat's sad! Can you get a new gyno? Also, I was 10 when I got mine, so I am feeling your pain.[/quote]

I've never actually been to a gyno (I just turned 18). It was my pediatrition I told when I was 13, and since she told me it was nothing to worry about, I just figured I was in a very unfortunate category of ladies who have periods from hell. Definently going to see one soon though!


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 Post subject: Re: Endometriosis
PostPosted: Tue Jun 21, 2011 7:27 pm 
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Good! I'm glad you're going to see someone. I hope they can help!

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 Post subject: Re: Endometriosis
PostPosted: Tue Jun 21, 2011 7:36 pm 
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I hope someone can help you as well!


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 Post subject: Re: Endometriosis
PostPosted: Thu Jun 23, 2011 2:55 pm 
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Simply_Love wrote:
appifanie wrote:
That's sad! Can you get a new gyno? Also, I was 10 when I got mine, so I am feeling your pain.


I've never actually been to a gyno (I just turned 18). It was my pediatrition I told when I was 13, and since she told me it was nothing to worry about, I just figured I was in a very unfortunate category of ladies who have periods from hell. Definently going to see one soon though!


I told my gyno about my symptoms consistently over the course of three years before she brilliantly deduced that I might have endo and ordered a laproscopy. She's my third gyno, so I really don't want to find another one, but between the endo and the infertility she doesn't think is a big deal after more than 6 years of trying to get pregnant... I think I need someone a little more proactive.

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 Post subject: Re: Endometriosis
PostPosted: Thu Jun 23, 2011 3:19 pm 
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Please consider going to a Reproductive Endocrinologist Sunflower! My OB missed my PCOS (even though I was menstruating about 1x every four months or so) and kept telling me it was normal given my age and to just to keep trying.

My RE ran every test in the book, ruled out a ton of things, found the PCOS and started us on our successful journey to have a baby. If I'd stayed with the last OB, I might still be agonizing over why it was just never working for me or chalking it up to being too old.

My RE is in NYC, she is a professor at NYU Medical School and an expert in her field, and I am so grateful to have met her.

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 Post subject: Re: Endometriosis
PostPosted: Fri Jun 24, 2011 12:29 pm 
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Tofulish wrote:
Please consider going to a Reproductive Endocrinologist Sunflower! My OB missed my PCOS (even though I was menstruating about 1x every four months or so) and kept telling me it was normal given my age and to just to keep trying.

My RE ran every test in the book, ruled out a ton of things, found the PCOS and started us on our successful journey to have a baby. If I'd stayed with the last OB, I might still be agonizing over why it was just never working for me or chalking it up to being too old.

My RE is in NYC, she is a professor at NYU Medical School and an expert in her field, and I am so grateful to have met her.


Thanks for the tip, Tofulish! I'll look into it!

Also, has anyone else noticed how many people in this thread have said that their doctors just kind of went, "Eh. It's normal," and didn't pursue it? That bothers me.

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 Post subject: Re: Endometriosis
PostPosted: Fri Jun 24, 2011 1:03 pm 
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Sunflower wrote:

Also, has anyone else noticed how many people in this thread have said that their doctors just kind of went, "Eh. It's normal," and didn't pursue it? That bothers me.


I kept being tossed back and forth between my gyno and my gastro doctor, no one wanted to claim it their territory. Sooooo annoying. The split in Western medicine works against itself.
But I love my nurse practitioner! She finally stepped in and sent me to a gyno who took it seriously and finally got something done. In everyones defense though I wasn't presenting with the normal endometriosis pattern.

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