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 Post subject: Re: Endometriosis
PostPosted: Thu Dec 15, 2011 12:41 pm 
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I guess this thread is totally old, but I'm just now dealing with this so whatever.

Anyway, I always had really bad periods, though they weren't as bad when I was on birth control as a teenager but the side effects of the birth control were so bad I had to stop. In the past couple of years though they got increasingly worse and I started having pain throughout the month. The pain I get during my periods is so bad that sometimes I can't even make it to the bathroom by myself. This summer I had 40-something days between periods and then when I finally got it the bleeding was so fast and heavy and the pain so severe that my boyfriend made me go to the ER. At first we thought I must have gotten pregnant and was having a miscarriage but no, it was just my period. One of the nurses at the ER asked me some questions about other symptoms (the ones listed above) and said that she thought I might have endometriosis (it turns out she had it and suspected right away when I was telling them what my periods are usually like).

So I went to the gyno recently and she said that since my insurance ran out/I'm poor and that even if it isn't endometriosis she would recommend that I go on the pill again but try a different type, she didn't think I needed to do the surgery right away to find out. She gave me six months worth of (free) birth control pills and said to come back in six months and we could go from there depending on how I do. They're the kind where you only have four periods a year, so I shouldn't really know if they're actually helping for a few months since I just started taking them on Sunday. I am still having pains occasionally, but that could just be adjustment to the pill. So far I haven't noticed any troublesome side effects, but I think it's too early to tell. I probably need to be on it for at least a month before I really know how it affects me.

I'm definitely concerned since the only other times I used hormonal birth control (one type of pill that I unfortunately can't remember and the NuvaRing) made me a crazy person. So far I can't tell if the crazy this week has been my normal crazy or if it's birth control crazy. My boyfriend says I don't seem any different. I really do hope this works though. I haven't been able to have a job, partly because of the pain. This would certainly be the best option for me financially since the gyno said she would keep giving me the pills for free if they work out and I have no insurance/no money.

Fingers crossed.


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 Post subject: Re: Endometriosis
PostPosted: Fri Dec 27, 2013 12:29 am 
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While I don't have a surgical diagnosis, my primary care doctor, and the ER doctor think I've got it. I was probably stage 1 or 2 the past few years, but it's clearly progressed with a vengence recently. Earlier this week I was in the worst pain I have ever been in. I thought I might be giving birth (?) and/or dying. My primary care phys. sent me to the ER, which brings me to a grand total of 3 times I've been to the ER for endometriosis symptoms. They should really give me a punch card. It took me another day and a half to get on my feet, and I get bouts of pain multiple times a day. It's starting to feel unmanageable.

It's also causing me so much anxiety. Every new pain and I worry I'm about to be in bed for the next 2 days. Certain foods seem to make the pain worse so I worry about everything I put in my mouth. I'm afraid to go in public or far from home in case I have an attack.

My doctor has me on BC now, so maybe it will help?

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 Post subject: Re: Endometriosis
PostPosted: Mon Dec 30, 2013 11:08 pm 
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I'm going to have to keep an eye on this thread. My mother, her mother, and her grandmother all had endometriosis. Possibly the generation above that, too. I'm currently on birth control to make sure it doesn't get out of hand, because I know that at least my mom had a hysterectomy for it.

I have almost all of that and would have never thought it related. Good to know! I do have painful ovulation and have had two miscarriages (out of two pregnancies). Lucky me. Since this hits me more with the reproductive side, maybe I'll at least break the cycle. . . by having no children. Whoopee.

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 Post subject: Re: Endometriosis
PostPosted: Mon Jan 06, 2014 8:47 pm 
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My doctor reviewed the ultrasound I got last week and is officially referring me to a specialist for diagnosis! One step closer!

I haven't had a pain free day in about a month. I'm so ready for whatever surgery necessary.

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 Post subject: Re: Endometriosis
PostPosted: Tue Jan 07, 2014 8:50 am 
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Nebraskalaska wrote:
My doctor reviewed the ultrasound I got last week and is officially referring me to a specialist for diagnosis! One step closer!

I haven't had a pain free day in about a month. I'm so ready for whatever surgery necessary.


Can I ask if you know what they saw in the ultrasound? I had one yesterday and the tech said that he "doesn't see any cause for concern" in it which I take to mean all normal etc. But I have read that endo doesn't show up in ultrasounds. I have also not had a pain free day in a very long time and am extremely fed up of it.

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 Post subject: Re: Endometriosis
PostPosted: Tue Jan 07, 2014 1:27 pm 
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Endometriosis doesn't always show up in ultrasounds, but sometimes a doctor can spot something that is suggestive of the condition. I have multiple complex cysts on my ovaries which are consistent with endometriosis. Not everyone who has endometriosis gets these sort of cysts though.

Good luck! The constant pain is just awful, so I really hope you can get some answers soon.

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 Post subject: Re: Endometriosis
PostPosted: Tue Jan 07, 2014 1:48 pm 
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Nebraskalaska wrote:
Endometriosis doesn't always show up in ultrasounds...


The only way to confirm Endometriosis is through a biopsy.

Surgery isn't necessarily a cure-all. If they just remove the excess tissue, they can never be sure they've got it all and it can and usually does come back. A hysterectomy is the only sure way and it's also the most extreme. They usually try to control it first with horomone therapy, ie. birth control.

I had a biopsy and tissue removal almost 3 years ago. I only had about a year pain free before it came back. I'm basically waiting it out before going back to the doctor because I know the next step is hormones and I HATED being on birth control. The low dosage I was intially on as birth control didn't help, I know I'd have to get on a higher dosage, which means more side effects. My pain is some what managable, I lose a few days to severe immobilizing pain and then tolerable pain for a week on top of that. If it gets worse I'll go back.

Good luck though!
I know this process of diagnosis all to well and it can be incredibley frustrating.

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 Post subject: Re: Endometriosis
PostPosted: Tue Jan 07, 2014 2:29 pm 
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Yeah, I think I read that 45% of women have symptoms return within a year of surgery. That does sound like a bummer, but my symptoms of 5 years ago were manageable with over the counter pain killers. I would be thrilled just to get back to that point.

My doctor has me on BC right now, but doesn't think it will help much with the stage I'm at, so she wants me to get the surgical diagnosis and treatment ASAP.

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 Post subject: Re: Endometriosis
PostPosted: Wed Jan 15, 2014 4:14 pm 
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Had an appointment with a specialist today and we're scheduling a laprascopy. That's fine and great! I'm very excited to hopefully getting a diagnosis and treatment soon. The thing that's got me really down is that she wants me to go on Lupron after the procedure which will apparently cause me to go into menopause temporarily. what the fizzle. I'm actually way more uncomfortable with being on this medication for a few months than I am of having surgery. On the bright side, maybe it will help me get over my fear of menopause?

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 Post subject: Re: Endometriosis
PostPosted: Fri Jan 31, 2014 2:52 pm 
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My surgery is officially scheduled for mid-March. Even though it's an outpatient surgery I'm still pretty nervous/scared.

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 Post subject: Re: Endometriosis
PostPosted: Fri Jan 31, 2014 3:36 pm 
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Good luck with your surgery! What's the reason she wants you to go on that medication?

I finally convinced my doctors to refer me to a gyno and nearest appt is in march so, will see how that goes.

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 Post subject: Re: Endometriosis
PostPosted: Fri Jan 31, 2014 4:25 pm 
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vixki wrote:
Good luck with your surgery! What's the reason she wants you to go on that medication?

During the procedure they're going to cut out or lazer any bits of endo they can see, but there are going to be larger implants in areas that they can't get too with this procedure, or microscopic implants they just can't see that they aren't going to be able to remove. The medication is supposed to send me into menopause to shrink and kill any remaining implants. Fun!

Good luck with your appointment! I hope you get some answers soon.

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 Post subject: Re: Endometriosis
PostPosted: Fri Jul 25, 2014 7:20 pm 
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Hearts James Cromwell
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has anyone had any luck managing their symptoms through diet? like giving up caffeine, gluten, soy, etc.?


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 Post subject: Re: Endometriosis
PostPosted: Sat Jul 26, 2014 10:51 am 
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beasknees wrote:
has anyone had any luck managing their symptoms through diet? like giving up caffeine, gluten, soy, etc.?


I asked my doctor about that and he said diet had nothing to do with it.
I don't know if thats entirely true, perhaps a minimal effect? Makes sense given that it's a horomone related disease and if you're already vegan you don't have to worry about dairy or meat. Doctors don't know everything in my experience. But I honestly wouldn't even know where to start, apart from just a healthy diverse diet. I'm looking for a new gyno since I moved and I'll ask the new doctor as well though.

Is there any info/rumours out there claiming that eliminating certain foods actually helps?

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 Post subject: Re: Endometriosis
PostPosted: Sun Jul 27, 2014 11:59 am 
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all the endometriosis diet articles i've looked at seem to say pretty much the same thing: no wheat, dairy, red meat, caffeine, alcohol, fried foods, or refined sugars. the only thing they seem to differ about is whether or not soy is beneficial. the reason for eliminating these seems to be the opinion that they're "inflammatory and/or estrogenic," and in some cases (like alcohol) that they tax the liver, thus slowing down the elimination of estrogen. supposedly, anyway.

there are tons of anecdotal accounts from women on endo boards about how gluten-free helped immensely with symptoms. i can kind of see that, since bloating is such a huge problem associated with it.

i guess it also depends on which symptoms you have, too. i've developed horrible GERD and IBS because of it, so i've been trying to eliminate some stuff to help alleviate this current attack. i have interstitial cystitis as well, and i know that aspartame is the trigger for that, but that's an entirely different issue physiologically.


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 Post subject: Re: Endometriosis
PostPosted: Sun Jul 27, 2014 2:49 pm 
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beasknees wrote:
all the endometriosis diet articles i've looked at seem to say pretty much the same thing: no wheat, dairy, red meat, caffeine, alcohol, fried foods, or refined sugars. the only thing they seem to differ about is whether or not soy is beneficial. the reason for eliminating these seems to be the opinion that they're "inflammatory and/or estrogenic," and in some cases (like alcohol) that they tax the liver, thus slowing down the elimination of estrogen. supposedly, anyway.

there are tons of anecdotal accounts from women on endo boards about how gluten-free helped immensely with symptoms. i can kind of see that, since bloating is such a huge problem associated with it.

i guess it also depends on which symptoms you have, too. i've developed horrible GERD and IBS because of it, so i've been trying to eliminate some stuff to help alleviate this current attack. i have interstitial cystitis as well, and i know that aspartame is the trigger for that, but that's an entirely different issue physiologically.


Eating to reduce inflammation makes sense to me. I already try to do that because of severe IBS/colon issues. My stomach is just always swollen, despite being the same weight I was 10 years ago NONE of my pants fit because of it. Worst foods to give up are fried food, sugar and caffeine! My diet has been awful for the last year and I know I could stand to eat better. I get depressed though and food is my comfort unfortunately. This just becomes another reason to refocus on healthier eating.
I just started exercising again and I find that can help with reducing pain. Not while actively in pain but keeping it from being too severe when it starts. Plus helps with depression a lot, which can in turn help your diet if you're a comfort eater like me.

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