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So excited to join this community, share and learn so much!

Here are my symptoms:
*chronic pelvic & back pain
* diarreah
* heavy bleeding/clots
*pain during sex
*joint pain
*pain when urinating

I am 24 years old and I have been suffering with endo for 13 long years! In the past none of my doctors took the time to do ultrasounds or blood work. I went on a birth control patch when I was 13 years old but had to stop because it did not help the pain. I then went on Seasonale and had great results with less bleeding/pain and only 4 cycles a year. I had to stop that pill because my hair fell out. After that I stopped BC and stuck to pain meds.

At 17 years old I lost my insurance and no longer could afford my meds. I would then have to go to the ER if I could not control the pain, vommitting and pelvic pain with over the counter drugs. I am still uninsured and thinking of having a lap surgery done to decrease my pain...possibly and finally get a diagnosis. Only issue is I have to apply for financial assistace from my local county hospital..Grady. I also have to see a primary care doctor before they can refer me to a OB/GYN. That alone is a bummer because that could take weeks and lots of $$$.

So frustrating dealing with doctors that only see $$$ and not a person in pain!!! I feel like this surgery is my last option to feel like a normal woman. A chance to not spend days in bed and a chance to be active again! My fiance tries to be understanding but she just cant imagine my pain so its hard. If anyone has any suggestions I am all ears!

Posted by endotrip on 2011.10.22 at 00:44
Hi! I'm new... and was wondering how people were diagnosed with Endo? What treatment/medication they are on?

I am on dihydrocodeine and several antibiotics and an anti-sickness drug. My stomach is massive, big pregnancy belly (but not pregnant..)

Also, has anyone managed to conceive whilst suffereing from Endo?

Im not entirely sure how the community works and I dont know how to search previous posts so I apologise!

Endo Causing Exhaustion?

Posted by teal_daisy on 2009.05.12 at 16:18
Current Mood: exhaustedexhausted
Endo Causing Exhaustion?
Lately I've been so exhausted feeling that I nap for 2 or more hours during the day. The only thing that might be causing this is the endo. Is that possible? I had a lap over 2 years ago and since the endo has returned although no where near the level of pain I was in before. It is still a chronic pain that I have all month long instead of being confined to my period.

So while the endo is back but not at monunmental pain levels could it be causing this exhaustion? Other than turning to coffee what can I do to combat this?

I'm trying to figure out if I should go to the planned parenthood gyno or see a free clinic to deal with this. I'm without insurance.

Any advice, articles to look at anything to help me deal with this would be appreciated.

cross posted in endometriosis

kate B-her beautiful alter ego

New member long term sufferer

Posted by sarah_fbi on 2009.02.21 at 23:31
Hi there, I'm Sarah, 26, Australian and a Endometriosis sufferer. I also have PCO, which I suspect alot of you would have too!

Quick history:

I have had bad periods since I was 11yrs, and was finally diagnosed with the disease when I was 17yrs.
I have had 6 laparoscopies, the last one was last October, and I vow never to have another one again! I have severe nerve damage (Neurogenic pain) from having so many surgeriesand the last few haven't even worked very well, it just keeps growing back, and spreading to other organs.

I also have had many treatments,a few being Zoladex Implants and Merina, but they never worked, my body just rejected them. I have also tried nearly all of the Contraception Pills available, but again nothing works.

I would love to talk to other sufferers, find out what treatments you have tried and symptoms you suffer from. Hope to speak to you soon.

I hope it's ok that I joined this community? I was actually going to start my own, but now I'm happy to see that I don't need to =]


Needing Support....

Posted by rapturedevoted on 2009.01.21 at 18:48
Current Location: home
Current Mood: depresseddepressed
Current Music: what's wrong with me?
Hi folks, I'm new to this community. Hell, I'm new to Endometriosis. In fact, I haven't actually been professionally diagnosed with Endometriosis yet. But I'm almost positive that it's what I have. I'm 30 years old.

For the past couple of months I've had menstrual cramps every single day. My actual period comes just about on time, the flow is pretty much the same as it has always been (very heavy), and the cramps are the worst on the first day as has always been the case. But then a dull sensation of continued menstrual-like cramps linger on for the rest of the month until I start my period once again, it's a vicious cycle.

Then after about two months, I began getting other pains as well, sharp pangs in my stomach, and really bad pelvic pains. Finally, I broke down and went to see my general practitioner. She gave me an examination and said that she thought I had a cyst on the ovary but wanted to do an ultrasound, so two days later I went for my external and internal ultrasound. The doc called me with the results and said that she thought maybe I had Poly-Cystic Ovarian Syndrome (PCOS), and wanted me to come back in for some blood work to determine if so.

Well I'm currently waiting for my Medicaid card to come in, so she said there was no rush in coming in for the blood work, to just come in when I got my insurance card. Well in the meantime, some new symptoms have started that has lead me to doing even more research.

I'm a pretty petite woman at 5'2, 103lbs. My stomach has always been flat. But in the last few days my belly has grown. It's so tight and bloated. It's not a flabby tissue, it's a solid round belly as if I were pregnant (which I'm not). In the span of three days I've grown out of any pants that fit, even pants that were falling off my hips just last month. And the pelvic pain has become almost unbearable! Also, I've started getting some sharp shooting pains in my tailbone.

During my research I have found none of these symptoms within PCOS sites. In fact, most PCOS victims don't really experience all that much pain. I've been in so much pain this past month that I've barely been able to do much more than lay around all the day. Which is causing me quite a bit of depression on top of everything else. Below, I will list all of my symptoms.

As soon as I get my medicaid card I plan to go to a specialist and request a laparscopy so that I can find out for sure. I don't think my general practitioner is taking me or my pain seriously and I don't want to be wrongly diagnosed! 

Anyhow, I apologize for such a lengthy introduction. I am just really struggling here. Extremely frustrated with the chronic pain and feeling like no one believes how miserable this really is for me. I would really appreciate anyone's friendship through this... someone who's also going through this or has been through it. Thanks so much for your time.

Chronic Fatigue
Abdominal Pain
Chronic Constipation
Severe Pelvic Pain
Bloated Abdominal
Tailbone Pain

Back Pain (mostly lumbar)
Right Shoulder Pain
Upper Leg Pain

( I can be reached at :   RaptureDevoted @ Yahoo! IM
If you prefer another Instant Messaging program, just let me know! )

Hi, I am new here and wanted to post some resources from our site. I hope it will help some here find natural answers to improve their quality of life.

Natural Treatment for Infertility caused by Endometriosis

It IS possible to overcome infertility and pain caused by endometriosis. The natural endometriosis treatments we develop for our patients help to relieve the painful symptoms and infertility caused by endometriosis, and can completely resolve the source of the endometriosis as well – without drugs or surgery.

Learn More about Endometriosis: Causes | Diagnosis | Signs | Symptoms | Natural Treatment Endometriosis | FAQ | IVF & Endometriosis? | Meditation & Visualization | Endometriosis Studies

I am new to you

Posted by sinster_siren on 2007.03.15 at 15:39
Hello everyone, my name is Jennifer. I am 31 years old and have endometriosis.  Although I have not been formally diagnosed with it, I have ALL the symptoms and more.  My mother, who is a nurse, has it and she is 100% certain I do as well. 
brief historyCollapse )

I wrote a peom about endo if anyone would like to read it sometime, let me know.  take care all and God bless


Pain... of a mental variety

Posted by lunaripyros on 2007.02.09 at 20:44
Current Mood: bitchybitchy

School goes a pace. The math class is easier then I thought which is making me regret cutting a class so I would have extra time for it. The professor seemed a sweet heart, I told her about my medical problems and that things may or may not come up and she was very good about it. My other proffesors took it well too and promised to work with me if anything came up.

Till this week, suddenly my math professor is a hard ass, I have a doctors appiontment I scheduled over a month and a half ago that conflicts with her class, then a week before she decideds to shcedule a test that day. I try to talk to her reschedule the test for anouther time, literally anything that would be convent for her. Becuase I can't reschedule the appiontment. This doctor is only in once a month and it's always a Thuresday, and I had taken the last slot on his schedule when I scheduled. And my Proffessor? Absolutly no help, according to her I'm there to take the test of I get a zero.

So I went to my Disabilities Cordinator and explained it all agian. She doresn't schedule her tests ahead of time, the only tests with set dates are the midterm and final. I couldn't have known nor did I shcedule such a conflict on purpose. So he e-mails her, and I'm allowed to take the test in his office the day before. Fine great! The teacher reminds me rudely and coldly that this is a one time deal.

Then I show up for the test and my disabilities cordinator also tells me coldly this is a one time deal I better never make an appiontment over one of her tests agian... I point out that all but two of her tests are not prescheduled. He then grumply replies that I should then never schedule anything in any way to conflict with her class. I stare at him for a moment... "So should I switch docotors just for her even though this is a great doctor." He hurries me along and doesn't really reply. I head off to take more Ibprofen and see a few more doctors fighting through the starting pains of my period.

By 3 I'm in so much pain I cannot any longer drive myself to appiontments. By 5 I put on the heavy duty pain killer patch. By thuresday morning I'm in so much pain I cannot walk, I have a headache so bad i cannot see straight, and I'm trying desperatly not to puke. (( I fight I evebtualy lost)) There is no way I'm gonna walk across town for that damb appiontment. Fuck! So I call, maybe the doctor and I can go over stuff over the phone? ...I wish, apparently if I don't come to him.. no appiontment... Fuck these stuck up people are killing me. He's a fucking shrink, what can he do in the office that he cant do over the phone? We where just going to discuss how the changed he made last appiontment to my meds where going... I could sign all the paper work next time I was in so he culd get paid... I mean shit!

This also means no paper work from the office to take to my disabilities Cordinator, nor something with a professional signature explaining that I wasn't lying about the fucking once a month availability shit. The lady in the office offers to reschedule me with anouther doctor so I will not have to wait so long for an appiontment... Just so happens to be a doctor that I've made it plan like 8 times that I will not see because I do not like her.

All this trouble and for what??? I wish that doctor or that pissy secretary could have seen me sitting there nearl;y in tears yesterday. Or that my professor or my disabilities cordinator could have seen me wincing a nd swearing and trying not to cry as I was driven to my last two doctors appiontments of the day.

You know that proffessor had the balls to say some pretty personal shit. " I'm sorry Michelle but that's just how it is. If this where a job and you where out of sick days you'd just have to take a day with out pay..." I interupt, "That's why I'm not working right now." She looks at me. "Well then maybe you have some decisions to make, maybe you shouldn't be in school.." I cut her off agian with a blank stare..." Excuse me?" Blink blink, she just stares. I speak as I walk away from her. "Well I'm glad I'm not you, because I have no intention of giving up and letting my illness take over my life." I say nothing else and walk away, I don't need to piss her off any more then going over her head to my Disabilities cordinator was going to. What I really wanted to say? ... "Well thank the gods this isn't a real job and I pay you!"

I mean on one hand I understand where she's coming from, if I missed class because of a hangover or because I thought I had somthing better to do... or any number of the lame excuses college students use, I wouldn't expect he to allow me to make up the test. What I don't get is her attitude with me, I do all my homework, I take excellent notes, I ask lots of questions. I've only missed one class and called and asked about the homework and had it done on time. What more could this woman want? I get the impression she thinks I need to straighten out my priorities. What she doesn't get is that my priorities are perfectly straight. My health first, school second, and everything else after, unless it's a life or death emergancy involving myt family or a few of my closest friends. I think my priorities are absoluty fine. She only 30ish, ya know give or take 5 years, which is rather young for a college professor. Maybe she has some experience with teaching high school. But she definatly hasn't been teaching college long, she's still too controling. Some of the kids on campus may need to be treated like brainless high schoolers, most of them infact. But not me, I've worked for a living, I've maintaned my own home for 8 years, and mommy and daddy certaintly aren't paying for my schooling and my acar and my phone. Infact I'm lucky enough to get grants(though honestly I'd gladly give them up to be healthy agian), a friend pays for my phone for me, and I don't have a car- I take the bus. So I don't need to be treated like an irrsponcible idiot who knows nothing about the world, I probably know a bit more about it then the god dam teacher does. HEH... you know I bet if i was a single mom and had to do something pertaining to my kids she probably wouldn't give me a hard time. I find the thought amusing because having children is still a chioce (( it takes two to tango)) where as me being sick and having to see doctors isn't. Fucking people, maybe I'm not the one with fucked up priorities.

i have endo and i haven't gotten a lot of answers. in my search for fertility and my answers of came a cross this and found it intesting enough to want to share with you all. if you have endo, have ever had a misscarriages, failed round after round of ivf, or POF you should read it.Read more...Collapse )

Endo thesis!

Posted by the_most_pink on 2006.10.23 at 17:08

I am a senior at Lewis & Clark College in Portland, Oregon, studying sociology, anthropology, and gender studies. I currently writing my thesis which is (tentatively) titled: "Suffering Stigma: Endometriosis, Chronic Pain, and Liberation through Language." Having been diagnosed with endo three years ago (but having suffered from it since I got my period at age ten), the beginning of my thesis has a personal introduction, and I then go on to discuss gendered notions of illness (including, and especially, hysteria), stigmatization of pain and suffering, the (culturally perceived) linguistic inexpressibility of pain, medical narratives, illness narratives and empowerment through language. I’ve been a member of these livejournal communities for a while now, and greatly appreciate the type of solidarity that I see being built here.

That being said, I would really be grateful for feedback from any of you on how you think this community (or any other online communities of which you might be a part) has helped you cope with this disease. If you felt disempowered in your conversations with your doctor, has this community helped to restore your sense of agency? Do you feel that sharing your story in words eliminates some of the control endo has over your life; does it allow you to “reclaim” your body and sense of self? Does listening to other women’s stories have this effect? How has being a part of this community changed your story?

I would also be interested to know if any of you attend in person support groups in your area, or if you prefer the online community format.

If you are comfortable with posting a response here, that is fine, or if you like, you can email me at kmerrill@lclark.edu. I am also happy to talk with anyone at a greater length if they are interested.

Thank you so much for your help. Your words can really help make this thesis more persuasive, and I think that it’s time the greater population knew more about this disease and its implications.

I wish you all good health and happiness.

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