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Author Topic: Endometriosis support
nixieGurl
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Hey all,

Well I know I am far from the only one who has a whole lot of problems from this disease, and it seem's more and more women and girl's are finding out they have this everyday. I know when I was first diagnosed the process could be scary and confusing, so here is a thread for those of you with concerns about endometriosis, to share some tips on managing pain, emotional stress, and just support each other. So, ask, share and support away!

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LittleMissSunshine
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Yup, *raises hand*. I've got it.

I was diagnosed via Laparoscopy about a year ago now (at 18), but I knew something was wrong within the first year of starting my period (at 15). For me, the biggest challenge was being diagnosed in the first place.

I had general practicioners who blew me off, put me on HBC's that made my symptoms worse (apparently certain hormone combinations tend to make Endometriosis worse..). I had other Doctors who sent me on wild goose chases investigating causes of pain such as bowel, bladder, and back problems. Don't get me wrong, I realize that it's best to cover all your bases, but for me it was so frusterating being in so much pain, and not having anyone who could tell me what it was.

Now, I'm pretty peachy. I'm on hormonal treatments, and that past surgery recovered my quality of life just in time for my Freshman year of college.

My biggest current problems are as such...

1. Still having a few bad "pain days". Doctor tells me I live with them or they do surgery again. SO frusterating. Anyone have any insight on ways to make day to day pain better while undergoing treatment that doesn't involve heavy duty pain meds or things like Advil or Motrin (my pain laughs in the face of OTC's).

2. Hormone treaments=hot flashes, night sweats, and nausea/vomiting about 4-5 hours after taking the meds (I've leared that taking them at night works better). Problems with temperature regulation continue into the day. My friends and co-workers really don't realize what it's like to be going through things like that at 19. Anyone had problems like that in the past?

Glad to hear a support group has finally been made for folks like us!

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Leabug
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LittleMissSunshine- while I don't have endometriosis, I do have Crohn's, and I definately get similar symptoms as you mentioned in your second problem- hot flashes and night sweats. Just wanted to give you a little shout of support on those things- it's super hard to deal with sometimes since people just don't seem to get it. I've even had a few people tease that I'm going through menopause... *rolls eyes* Sorry if this is out of place since I myself don't have endometriosis, but I hope it still helps to hear that someone at least understands the whole hot flash thing! [Smile]

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Lea

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-Lauren-
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I'm wondering how you guys got diagnosed, if you wouldn't mind sharing?

I've had pretty gut-wrenching menstrual cramps with accompanying bowel problems since.. well, forever, and all the doctors I've brought it up to just seem to want me to "Try another pill". The kicker though? Birth control pills reduce the duration of flow, but it makes my cramps and stomach problems about a million times worse!

I wouldn't suspect endo, but I've had major abdominal surgery to remove ovarian tumors, which I hear is a risk factor, and it just plain seems odd to me than BCP's help almost everyone else but make me double over..

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Heather
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LittleMissSunshine: have you considered acupuncture?

Seriously, it's heaven when it comes to any kind of pain management, it's totally holistic and there are no drugs involved.

Note: I am a serious acupuncture enthusiast. I've found acupuncture and chinese medicine to be a godsend for me for similar issues/symptoms. That said, here's a piece or two for you expressly about acupuncture and endo: http://www.endo-resolved.com/acupuncture.html and http://www.acupuncture.com/conditions/endometr.htm

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Heather Corinna, Executive Director & Founder, Scarleteen
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LittleMissSunshine
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Leabug- Oh yes, finally! Someone who is younger who understands the hot flashes...I try to explain it, but I'd rather not divuldge my whole medical history, as I'm sure you understand too! Glad to know someone else is out there!

Heather- No, I haven't really looked into acupuncture, but I will for sure look at the link! Looks intresting, and I have no problem with needles [Smile]

Lauren- I'm going to do a second post to answer your question because I think the diagnostic process requires a bit more explaination

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LittleMissSunshine
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In response to Lauren's question about how Endometriosis is diagnosed...

The only 100% sure way to have it diagnosed is through a laparoscopy. A basic idea of what a laparoscopy is can be found here (http://en.wikipedia.org/wiki/Laparoscopy). Many other surgeries are performed this way today...anything from any apendectomy, removal of cysts, etc.

But I digress. Other tests such as ultrasound, CAT scans, and blood tests may *hint* towards Endo, but more than likely, your Doctor will not make a dignosis of Endometriosis without a laparoscopy. Lauren, if you've had major abdominal surgery in the past, the Doctor more than likely would have caught and possible Endometriosis...

I'm not sure if there's any correlation between ovarian tumors (and or) repeat abdominal surgeries and Endometriosis. What I DO know, is that, for a person with Endo, surgery becomes a double edged sword. The Endometrial growths outside of the uterus bleed in response to hormonal changes (which is why hormone therapy is a common treatment), which in turn causes scar tissue. The goal of surgery to treat Endometriosis is to remove the Endometrial growths, and remove scar tissue which may be causing pain. Problem is, is that every surgery, and lasering adhesions causes more scar tissue to some extent. Surgery can be a very vicious cycle for someone with a condition like Endometriosis.

I'd reccomend that you talk with your Doctor about your continuing pain, and she what s/he suggests as the next road to go down. Chances are, if you feel something is wrong, you're most likely right. Don't settle with an answer that doesn't sit right with you!

Best of luck!

[ 08-23-2007, 04:24 PM: Message edited by: LittleMissSunshine ]

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nixieGurl
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I agree about the surgery! I felt pretty good after my surgery last year, for a few weeks anyway. Now it looks like its back so i have to make a choice on what to do yet. I am also using the mirena IUD which is not good for me, especially because i have endo on my bladder and the IUD is not so good if you have bladder issues. Has anyone else tried this IUD or something similar before?

I also found that hormonal treatmeants can really be hard on the body and my moods [Razz] So I am looking about for some natural therapies now, so I must try accupuncture as heather suggested, just a little nervous about it.

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-Lauren-
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Whelp, I got diagnosed. Or, at least, he said what I described sounded a lot like mild to moderate endometriosis.. the doc was sort of busy handling my other stuff and referrals.

Anyway, he prescribed Seasonale as a treatment, and despite how I feel in general about menstrual suppression, I decided to give it a shot, even though I'm pretty sure it's just temporary relief.

I'll be researching as to whether suppression can make endometrium shrivel and disappear, or if it was just a method of making my suffering less frequent. I really didn't want to go on the pill, but considering Seasonale is a recognized treatment for endo, I reconsidered. Any thoughts?

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-Lauren-
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(bad board glitch!)

[ 09-06-2007, 10:06 PM: Message edited by: *Lauren* ]

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LittleMissSunshine
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If the benefits outweigh the risks, I'd say it's worth it. I had no quality of life whatsoever before I started my treatments, so I'm not losing sleep over supressing my periods.

Lauren, what I find intresting is that your Doctor was willing to make a diagnosis of endometriosis without surgery. Usually to start treament like that without looking DEEP into what could be causing problems isn't very sage. Just curious what kind of diagnostic tests your Doctor used I suppose...

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-Lauren-
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None! I asked about exploratory surgery since I was of the understanding that's the only way to confirm/deny endo, but he said more physicians are choosing to forego the practice nowadays since endo has gotten more common, and to simply diagnose through symptoms, try the simpler treatments like menstrual suppression and painkillers, and move on to exploratory surgery if it fails.

I'm personally happy with that answer for now as abdominal surgery is not something I'm keen on, I was just curious if anybody has gotten relief from menstrual suppression in the long term (as in, actually helping), versus just spacing out the number of torture sessions. [Smile]

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LittleMissSunshine
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Well. Long term (as in YEARS and YEARS) supression...it just physically doesn't happen.

Pretty much no matter what treatment you do, taking HBC constantly, Depo, Lupron, anything short of taking out your ovaries/uterus, you're still going to have SOME bleeding at SOME point.

For example, you/your Doctor decide to have you take HBC constantly. The laws of nature say you're going to have some bleeding and spotting at some point. It's the nature of the beast. Your body just can't go years and year without having some sort of spotting even while taking medicinces long term to supress cycles. Even on Lupron (google it) (which actually isn't used long term, a few months at most because of how nasty it is), most people have some light spotting.

In other words, real "supression" doesn't exactly happen. Not sure if that makes any sense. I guess the overall point is, no matter WHAT you choose to do, there really is NO way to stop ALL forms of bleeding.

I've had success with what I do. I'll do a seperate post with my "cocktail"....

Yet again, whatever works for pain, and helps to prevent endo from getting worse and disrupting fertility and other organ systems is best.

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LittleMissSunshine
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(Disclaimer). Everyone is diffrent. Just because it works for one person, it may not work for another, but since there seems to be curiosity as to what has worked and has not, it seems sage to post.

My "cocktail" of treatment.

*Exploratory surgery/lasering of Endometrial adhesions and scar tissue-2006

*After surgery...

*Demulen (which is just a typical HBC) taken continuously, usually for 9-12 weeks, depending on symptoms. Followed by a one week break of placebos. I usually only spot (or nothing at all) during that week, but it is HELL.

*Lupron was used for a few months (3 maybe?) after surgery to ward off any regrowth. It's nasty stuff, and is not used commonly because of bone density issues, and severe side effects. If I have a severe increase in pain or symptoms that seem to be persistent, a course of Lupron may be considered. If that fails, surgery is another option. (Note: I've only had 2 courses of Lupron because of how bad it is...)

*Basic lifestyle changes: Eat healthy, pain relievers and heatpacks/Thermacares. I've looked into alternative therapies. And I make necessary changes in my schedule if I have to take a break from my meds for a week.

(Taking breaks in the meds is truly necessary. It's healthier, and I'd rather be able to control what bleeding/spotting I have, rather than have it happen at weird times, and be in hell at weird times)

[ 09-07-2007, 11:55 PM: Message edited by: LittleMissSunshine ]

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