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Discussion:
At long last I have found you!
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I have been searching for a support system and/or group since I was finally diagnosis with Endometriosis. Last month I had at long last validation that my pain was real when I had finally pressured my Doctor's to conduct surgery. It was verified that I had implants of Endo and a few organs decided they wanted to be more "attached" than then originally designed.

It took years to figure out what was causing my pain because it actually started in my Gallbladder. After searching all over the internet I found that a few women had been through similar experiences. Usually, however, it was the other way around. Endo then gallbladder. Since then I was always sent to GI specialist that treated me for IBS and I even had a doctor tell me that my back pain was most likely because I was top heavy. As you know, spine pain is completely different than the tissues aches that make it feel like your kidneys are infected. But since all the blood test came back clear, treating the symptom was the only option I was given. (By the way, I hate that game.)

It was a long road and yet here we are. I have only found this website today and I can see from the recent post that ALL of my symptoms are real. I know it sound slightly insane but my family, friends, and doctor's thought I was just creative enough to bring these phantom pains into reality. (I never thought my mind was ever that powerful, lol)

I let my Doctor treat me with Lupron, because my insurance wants me to follow my doctor's orders. However, I feel that my Doctor isn't accustom to treating women with Endometriosis for pain. Now I want kids but I want to be healthy for my kids! She doesn't seem to be able to answer any of my questions and worse has treated me like I am making a bigger deal of this than I should. It is like beating my head against the wall! Why would anyone want to pretend that they are in so much pain that they can't get out of bed on a regular basis?!

Regardless, I have stage 1 however my pain has reached a point that it is daily with elevated symptoms during ovulation and menstruation. I hope the treatment helps but I am scared. I hate medicine and I am taking more than my fair share at this point. I am on the 3 month shot currently for Lupron and I feel frantic and overly stressed. I know it is most likely the hormones but it has caused me to feel extremely alone. I have an amazing fiance who has been truly a knight in shining armor through out this whole process. I have been out of work on medical leave for 2 months now and it all has been enough to make me feel a little crazy, lol.

Sorry for the overly long post. My question to you brave and inspiring ladies is.. How do you coupe? What do you do to stay positive on days that seem hopeless? I have been working on a personal cookbook to help keep my mind busy and well, I love food! But I still want a human connection that can truly understand. That is why, I feel like breaking out into song like the wife in Young Frankenstein "... Oh At last I have found you!"

Thank you for .. being you! :D
Posted on 10/06/11, 05:11 pm
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Reminder: This is a support group for Endometriosis. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Reply #1 - 10/06/11  5:37pm
" Congradulations on finally discovering that you have endo, and for making your Doctors listen to you. I HATE/HATED when people suggest that something is wrong with my spine or soething and that must be causing my pain when I kept clearly stating "No! That's not it. It's hurting in the tissue!" Anyways, recently havent been coping so well, but usually I cope by reminding myself things like "At least this isn't a life threatening illness" etc. Somedays that doesn't work though and the I try to think of all the things that I CAN do instead of all the things the endo keeps me from doing. I also have a pretty solid support system so that helps :]

Bet of luck on your new journey!
Dana "
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Reply #2 - 10/06/11  7:02pm
" Thank you Dana! :D "
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Reply #3 - 10/07/11  7:37am
" Glad you finally found it! I also recently discovered my endo, about 6 months ago. I have had endo, I'm guessing 15 years. I had pain for years and never knew why, until earlier this year I had pain immense pain, which lead to an ultrasound and the discovery of a cyst the size of a baseball on my ovary.

Please share some of your recipes!

Shonnarae "
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Reply #4 - 10/07/11  7:56am
" Weeeeeeellllcccommmmmmeeeee :)

This place is a wonderful community where people actually do understand what you're going through :)

Lovely to have you here! "
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Reply #5 - 10/07/11  9:43am
" Welcome, glad you found us but sorry you had too. You need a new doc ASAP. If she has never treated endo RUN. It is very hard finding a doc who cares and wants to help you. Your endo needs to be treated AND your pain managed. I understand your insurance wants you to listen to your doc BUT your treatment is YOUR decision. Lupron can have nasty side effects so make sure your do your research. Endo pain can be managed with birth control pills and pain meds. You just need to find what works for YOU. Alittle bit of endo can cause a lot of pain. We have all dealt with people who dont believe we are in as much pain as we are because we look normal and have to function normally in the world. Noone truly understands unless they have endo. Your symptoms sound alot like mine used to be. You should try pelvic floor therapy. There is also a device called a TENS unit that you can buy online that helps with the pain. Acupuncture is also worth a try. Alot of us have tried a dozen things until we found the things that helped us. As far as staying positive you just have to keep fighting until you get some relief and keep telling yourself that endo wont win.

(((HUGS))) "
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Reply #6 - 10/07/11  1:54pm
" I see that you're in Austin, I am pretty positive there aren't any endo specialists there specifically, but I am sure there are some pretty awesome OBGYNs there that can help if you search around. If not there, maybe S&W in Temple or, if all else fails you may even search to Houston. You're in a good area to possibly find someone who will really be able to help. Just search around a little bit.

Like whyme was saying, the alternative treatments like acupuncture and pelvic floor therapy could be useful too. You're also probably in a good area for those treatments too.

Good luck, and welcome to the group!

(*hugs*)
--Tye "

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