What is Endometriosis
Endometriosis is a common medical condition where the tissue lining the uterus (the endometrium, from endo, "inside", and metra, "womb") is found outside of the uterus, typically a...
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Continuous bleeding. Women problems. WTF?
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I wish all my friends here didn't have to read this...bc I want this directed towards women, women with endometriosis, and/or women with I.C. I'm not trying to be rude but menstruation/vaginal problems are a rough ride that you don't want everyone knowing about. I feel very upset right now when I write this..just saying.
The problem: It's obnoxiously extensive. But....let me try to recap ultra-briefly while losing several details. Got endo 4 years ago. No period for 3 months, gained 20 lb's in a month. Had two lap's in the last 2 years - no help there. Continuous birth control was awesome (!!) until a year and half ago when I got a kidney infection and my health went to shit. I'm still on b/c pills now but since 1.5 yrs ago I feel like the pills are not working, the laps never worked, pain meds stopped working...and I HAVE MY PERIOD EVERY FREAKING DAY. It's light pink but it is every day. Of course doctors don't know what the deal is nor what to do. Not that I blame them, it's just that none of us seem to know enough about this. Gaining weight - which is depressing me like crazy- and eating less - every freakin day...dr's think ..ummm nothing. Nothing. No one knows. Okay so I've just recently gained a lot of wait, have lots of abdominal swelling and pain, having blood every day, the dr's have no idea, the lap's didn't work....aaaand then ladies, allow me to add that in the last 3 months I have now gained some unusual vaginal odor that I've neverrrrrr had before...and is not associated with an infection. It makes me not want to have sex. I know my smell and this is not it...and yet, the usual answer is infection - but I don't have one. Would love to hear back from anyone anywhere anytime bc this swelling, pain, odor (minus infection), nausea, continuous bleeding blah blah blah I could go on...and excuse my bitter tone but damnit I'm tired of this. Thank you. Elizabeth Posted on 01/05/09, 03:01 am |
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hugs, some words of solidarity here. it gets me upset that these options offered to women out there are usually variable and limited in their effectiveness, usually bringing on more problems or a continuation of the same. my obgyn offered laps, some chemo med and even depo-provera, but i'm digging my heels in and insisting on a complete hysto. 10 years is enough. i'm also tired of the nausea, diahrrea, heavy periods, bloating, weight gain, severe cramps, blood clots, you name it.
my heart goes out to you. all i can say is fight to get what you want, and dont stop until you get it. the squeaky wheel is annoying to med professionals but often it's the only way. firm and polite, but ressolute. i'm behind you on that. many people belive endo is an autoimmune issue. that being said, i get uti's and candida infections frequently as well, which to me is yet another sign that my immune system is wacked. dont know what to tell you about the change you're experiencing, but i hope you get someone in your corner soon. hugs and best wishes. 
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nikL is right on target. It definitely could be an allergy on top of the endo. I'm about your age and have had endo since my first period. In recent years I've developed lots of food allergies and candida. Also possible IBS, etc. You really need to find a doc that takes you seriously and does some extensive bloodwork and cat scans and the like.
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My heart goes out to you my dear because I was in your same place this time last year. I went to so many doctors that I lost count. Every one of them told me I was crazy and needed antidepressants. The only thing I was depressed about is that no one was listening! I was having frequent yeast infections as well. I also bled for 5 weeks straight and my doctor told me that my body was rejecting the continuous birth control pill. Okay...I went off of them after being on them for 15 years straight! All I can say is that I understand your frustration. Doctors are clueless. I finally found The Center for Endometriosis Care in Atlanta! Only an Endometriosis specialist truly understands all the symptoms you and I have/had. Dr. Sinervo was a prayer answered for me! You have to find a doctor who will actually listen to you. Don't give up! Remember, you are not crazy. Oh, and I know about the weight gain! After my first lap I gained 25 pounds, then lost it. Now, after lap 2 & 3 last year I have almost gained it all back! My clothes don't fit anymore. It sucks!!!
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Hey Nik...what concerns me about a hysterectomy are the reports of how for many the endo just comes back anyways, despite the fact that it makes more sense to just remove everything.
But yeah I've heard of many people getting the endo back even when everything is removed. I find that really bizarre. If that's the case then retrograde bleeding would not be the cause of the problem. Have you read about this issue with hysterectomies and what is your personal opinion on this? Does it make it point more towards I.C.? I wonder what this does mean. Actually my urologist said he isn't sure that endometriosis isn't just a case of interstitial cystitis. He deals with I.C. almost exclusively and knows it well, but there are many things that surprised me that he did NOT know and/or said that I am certain he was wrong about. So take it for what it's worth. I hadn't heard of a chemo med being a possibly treatment. Wow. Yeah I think autoimmune is involved too. Almost everything I have is related to autoimmune, so it just makes sense. Kinda. I have on occasion found some nice/cool doctors that believed me but in the end, it just seems that no one really knows what to do. We're all different and does anyone ever truly get cured from this? And if they were, would they still be on the site to report it? I appreciate ya.
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A hysterectomy does NOT cure endo. I don't care what the doctors say. They insist that if you have no uterus you can't still have endo but sooooo many women still do, even years later. I should know, I'm one of them! Endo cannot be IC because endo is growths inside your body. IC is something totally different. Though with all the inflamation it's hard to tell what is what when you have endo.
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