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I NEED ADVICE BADLY! PLEASE!
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I NEED ADVICE BADLY! PLEASE!

I am 31 years old and I was diagnosed with Endo back in 2005 after years of horrible periods and pain. I had a laparoscopy in 2005 when diagnosed. After surgery, I was put on Depo-Lupron for a year and it worked well. Doc wouldn't let me continue after a year so went on another form. Over the past couple years, I've noticed things were getting bad again. I moved to a new city a year and a half ago. Shortly after moving here, I started a job and things were going good, until that dreaded week of every month. There were days I couldn't get out of bed a laid there and cried. Horrible bleeding, cramps, back pain, etc. I ended up losing my job due to missing 4-7 days every month due to this. Well, I now have no insurance and the past 6 months have been sheer HELL. I've ended up in the ER a couple times due to it. About 4 months ago, I started my period and 6 weeks later, it hadn't stopped. The bleeding or the pain. Went to ER cuz I got so bad off, they referred me to a OBGYN near me. I went to her and she said its to the point I need a hysterectomy, but due to no insurance, I can't afford it, so she decided to put me on the Depo shot instead. Unfortunately, it has done nothing. I'm still bleeding, every day, and the pain sometimes is so bad, I stay in bed literally all day. I get so desperate due to the pain, I will take massive amounts of Advil to try to get rid of it. I don't do it too often, a couple times a week maybe. I take about 10-12 Advil at a time. I understand its not good for me but I get very desperate. I've become so depressed with it all, I have thought about ways to harm myself, around where my uterus is, just so they have to take it out. I've never felt so desperate. I'm not eligible for Medicaid or any assistance programs because I don't have kids and because I have a roommate who makes decent money, even though her income has nothing to do with me. She has been nice enough to not put me out on the street even though I have no income and can't pay anything. I hate not working and the person I've become due to this is FAR from who I usually am. So I'm curious is anyone knows of any programs or places that will help someone who doesn't have insurance and close to no income. I know its a long shot but I'm at the end of my rope. I don't know what to do.
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Avatar_f_tn
    That's awful. I have similar problems, but not that bad. When I didn't have insurance and my income was too low to pay for a procedure or qualify for regular assistance, I spoke with a Patient Advocate at a local hospital. I was able to get a grant which covered the full cost of an expensive procedure, and they were able to explore other options until that was in place for sure.

     Try contacting patient advocates at any nearby hospitals. You should be able to just call the main line and ask to speak with one. They can be very busy, so don't hesitate to call them again if you don't hear back within a couple of days or so.

     There may also be programs through other gynecological practices in your area, so you could call around and check into that. If there are any low-cost or community clinics nearby, call to see if they know of anyone; they may have a gynecologist who volunteers at their clinic and accepts patients through it, should they need care beyond what can be provided in the clinic; there are doctors in my area who do that.

    If I think of anything else, I'll post again. It's so bizarre that the income of a roommate affects assistance, but I had a situation like that, too. I really hope you can get this figured out-- and soon!
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Avatar_f_tn
Aquarielle has shared some great insight on other options! Also, there may be nearby hospitals/physicians conducting studies on women with Endo.

I, too, suffer from Endo and know how debilitating and depressing it can be when pain management is an issue.

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Yes she has shared some good insight. I wish I knew more about other countries and their healthcare as I live in Canada and we pay taxes for our health care.

Endo ***** completely and I totally feel the frustration and pain you are in.

I hope what information Aquarielle has given you helps :)
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Avatar_f_tn
I read a post once from a woman with endo who suffered as badly as you. She  kept applying for medicaid for 2 years and finally got it. She eventually had to take it to court and basically went up and told her story and ended up getting back payments for disability as well. I know that sounds like a long time, but it's worth it at least to keep challenging them. Keep applying and questioning and fighting for it. I'm sorry :( I know how rough things can get, but don't give up.

After I had my right ovary removed I felt like I was in almost constant pain for about a year. Except for a couple months of my 5 mth lupron stint, but the side effects were too awful. I wasn't sleeping, I felt crazy and moody all the time. I think I was awful to be around, things were not going well at work. I'd get crazy spasms, I wouldn't be able to stand up. I was nauseous every day. Worst year of my life. I just kept getting up every morning and making myself go. I told myself I didn't want to let the endo beat me, I didn't want it defining my life. I did hours upon hours of research. I'm also very lucky I have an understanding OBGYN who has helped me get to where I am now. Luckily she has supported my more natural treatments as well.
I can't stress how important it is to find a good ob with endometriosis experience who will understand, I've heard such horror stories. I don't think I would've kept my job w/o her help.

It also took a lot of time and frustration and tears and I wouldn't wish this condition on my worst enemy. The isolation, the pain, no one else understands how bad it really gets or gives us the benefit of the doubt.

I have had to do a lot of things. I've realized food is very closely related. Cutting out gluten(wheat products) and dairy has done wonders. All foods that cause inflammation too sugar, caffeine, red meat to name the most common probably. I take so many supplements every day that help clear out excess estrogens like DIM and calcium D glucarate. I also take milk thistle everyday to help my liver since I have to take some much crap including meds. Also your liver helps rid your body of excess estrogen. I use a progesterone cream since progesterone helps balance out estrogen and most women with PCOS and endo have low progesterone levels. My obgyn recommended I get a mirena IUD(intra-uterine device). That also releases small amounts of progesterone directly inside of your uterus so it can help shrink endo growths. Unfortunately it doesn't help everyone, but so far it's the only thing that's helped me along with diet.

If you live in the lower 48 I'd look for research opportunties as well.I live in AK so I couldn't find any, but all endo treatments aren't proven anyways. Looking into any non-profit hospitals would be a good idea too. I'm so sorry you're going through this :(. If you have any qts I'd be happy to answer them.
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Avatar_f_tn
Here's a website that can help you find clinical trials that are actively recruiting.

http://www.centerwatch.com/clinical-trials/listings/condition/60/endometriosis
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