Went to see the new gyn today and i'm not impressed. I'm actually so livid I'm drinking and its not even noon.
 ( ENDO Rant!  )( ENDO Rant!  )( ENDO Rant!  )Thanks ladies I feel a lot better.

hi all,
im 23 and have just come back from the gyn who believes i have endometriosis with poss bowel involvement, and has told me to take my oral contraceptives for 6 straight months to see if this alieviates my symptoms, and from what i have read mine are very mild!

has anyone else been prescribed this for mild symptoms? 

he says if not i will have to have keyhole surgery to have a better look? which by the sounds of it is how most of u were diagnosed?

a bit confused as how he can diagnose without looking? educated guess i suppose, but my worry is that im on the pill already, so dont think it will work, (a bit too pesimistic maybe!),

anyone in or has been in a similar situation with mild symptoms comments would be greatly appreiciated, just wondering what to expect and the possibilty of fertility problems if he never does an operation to see the extent of 'damage'? as i have read that even with mild symptoms the endometriosis can still be advanced, and therefore i could happily drift along with mild symptoms and no internal investigation, only to find years down the line when i want to concieve that there has been significant damage????

thanks in advance for any help you can offer!!!
x

I have been admitted into the hospital. Yesterday I was told they are pretty sure I have the H1-N1 Virus (aka swine flu) then called back later and said my platelets are low and I need to be hospitalized. My count is suppose to be between 150-400 and mines 11. They've mentioned Idiopathic thrombocytopenic purpura so...

do many women with Endo have Idiopathic thrombocytopenic purpura? Has anyone heard of it? If you've had it.. is it chronic or was it a one time thing?

tell me what you know please!!

 i was reading the Junea Labs (for endo) newsletter and found...

Did You Know…

Marilyn Monroe, the gorgeous movie star of the 50s voted 'sexiest woman of the century' by People magazine in 1999, also suffered from endometriosis. Just goes to show that this debilitating condition doesn't discriminate, and all the fame and fortune in the world doesn't provide much relief from endometriosis. It's important that we continue the search for a cure so that all women are able to pursue their dreams without interference from this condition



wow! Found it at, http://www.endtoendo.com/Endometriosis_Research_Summer_Newsletter_Endo_in_the_Media.html

I was looking through old posts but I can't find anything to answer all of my questions, so I'm going to post my questions behind a cut. I'll try and keep it brief, but it's likely going to involve some personal information!

( Read more... )

Thanks bunches:
-Me-

To anyone who uses Vicodin, Percoset, Darvocet, Lortab, and any meds that contain Acetaminophen...

This has been in the news before, when a group originally petitioned the FDA, but the FDA has now voted. The ban could be real and official very soon.


Excerpt:
"June 30, 2009
ADELPHI, Md. — Government experts called for sweeping safety restrictions Tuesday on the most widely used painkiller, including reducing the maximum dose of Tylenol and eliminating prescription drugs such as Vicodin and Percocet.

"...If the combination products are eliminated, the acetaminophen and the other ingredients could be prescribed separately. In effect, patients would take two pills instead of one, and be more aware of the acetaminophen they are consuming."

I currently take Tylenol 3 and Motrin for endometriosis pain each month. Last year, my liver enzymes were high, and I had to go off of Tylenol for three months until my liver stabilised again. I've tried codeine directly without any Tylenol in it, because my GYN is so against the use of Tylenol. But I have bad side effects to codeine. Mixing it with Tylenol seems to work better for me.

So this whole advisory vote is a bit unnerving for me. I need to find alternate working choices for medication, and fast.


( The article behind the cut )

  Im back @ home in Providence. Came home to no kitties (the ones i was fostering), and 2 dead rats. I am not a happy camper

surgery went well. Recovery is going fine as long as I can stay calm. I have to remember to let Jill take care of me. sigh. dr R is AMAZING. If you can, go see him @ the NewEngland Center for Endo.in Scarborough, Maine. He took out the endo he could find and removed my appendix, which was apparently wrapped around itself. Who knew? So we go from here..

not going back t owork til july 20. maybe i can get some stuff done here @ home now. like unpacking...

Hey Ladies,

It's been a while but I'm back to ask a question. I really love this forum you all are such great resources and I hope that I am also helpful to some of you.

My question today:

I'm 25 and I have a Pacemaker for a heart condition. I probably need another lap and we've been discussing it with my cardiologist, and internist,  but I won't get the ok to do it until I go see my GYN on the third. I probably need to have another lap because every time I have my period right now I end up passing out because my heart can't handle the Endo.

But I'm freaking out about having another surgery. What I'm wondering is if they will make me stay over night because of my heart condition and the pace maker. The last two laps I didn't have a pacemaker and I didn't have to stay overnight. But now that I have a pacemaker even the most routine procedures become this huge deal. And I really, really don't want to stay over night.

With all of all the surgeries and hospital stays I had for my heart over the past year, I have developed a sort of phobia of hospitals. I drive out of my way so I don't have to see them, I avoid all doctors visits unless they are 100% neccesary, and I can't watch any medical shows on TV. So it's bad enough to think about going in for another surgery but the prospect of staying over night has me just going crazy.

Does anyone else in here have a pacemaker or serious heart problem. And if you do,  have you had any gyn surgery with it? Even if you don't what do you think? Will they or should they keep me over night? Also, any ideas on how to overcome the hospital phobia... driving 15 minutes out of my way so I don't have to see a hospital is kind of dumb and I need to get over this.

Thanks so much for all your help and advice ladies I really appreciate it.

 ugh.....Tobey-cat decided to sit on my lap and erase my post. Cats! i really dont like the trend of radio stations playing old music during lunch time. Who wants to listen to that crap on their lunch hour? Not me.(ooh but this is a good song by Bush, Letting the Cables Sleep) my surgery for endometriosis is this Thursday, in Maine, so I wont be on here for a few days. Not that ya'll arent used to that. Jill & I are staying with her cousins who live about half an hour from the medical center. Id like to see my aunt & uncle on our way back, but we'll see. We are leaving tonight and returning Sunday. Then Im off til July 20th. Fun. I think you'll see me a bit more during this recovery. Thanks to Chris K. for coming over and taking care of our pets! :) Repayment for us taking care of theirs. lol. Weird how meg comes back the same day we do. The wolf rescue will miss her, as we have!On that note, the other day I dreamt that Meg and chris moved out there and worked on the rescue for the rest of their lives. It COULD happen! went to see my pcp yesterday as I felt icky. turns out i have respiratory tonsillitis. fun fun. thanks to z pack I'm feeling ok and the surgeon said I should be fine for surgery. My pcp didnt think so but I dont like her. I have a re-check july 14th and then I think I'll change drs. She was asking me all these q's about everything, like my depression (cuz she asked about my meds) and asked me where the depression came from. None of her business! I told her "its not from what you think". Drs always jump to conclusions about depression as a youth, things like abuse, etc. She asked me about this surgery and told me "if there's a doctor claiming to be an endo specialist, he's lying to you. There aren't any specialists for endometriosis." Like YOU would know you fat, ugly cow! Ugh. ok, gonna go. Cross posted on my blog.

hey ladies. Ive been m.i.a. for awhile cuz my net has been down and I havent had net for awhile. But now Im back. yay.

Im having surgery soon..june 25th in Maine w Dr R. If you are in the New Eng. region and need an excision specialist, SEE HIM (http://www.advancedwomenshealthcare.us/meet.php). Im having a hysterascopy, excision via lap, and an appendectomy. fun times. I hope this helps!! Im getting nervous now with it being about a week away now/

I see i have LOTs to read..blessings & hugs

kate

I saw this on a facebook group I'm a member of and thought I should post it up here.
However, since it has it linked I'm not too sure how many of you have seen it :)  ( Wall of Text )</div>

Hi, my name is Christina. I'm 25 and I live in southern New York. Have been on LJ on and off for 8 years but never knew about this community. Was DX with Endo in May of 2006 after many years of pain. Went on Lupron, then Depo-Provera for a year and a half....hated not knowing when I would "spot"...when on Seasonale (talk about a BAD decision!) for 6 months....switched Doctors because my previously amazing doctor became an @$$...have a great young indian female doctor now who wanted to put me back on Lupron but considering how I work two jobs and how Lupron put me out of comission my first month being on it, I decided to just go back on Depo-Provera. Have been pretty steady for the last couple months on it. The pain that I was experiencing under the Seasonale is now gone, and while nothing is perfect, I can live with what I have.

I have been told that when the time comes to have kids, I should be off all medications for at least a year. This makes me not want children. I can not go through this for a year, from the hormone withdrawl to being full-force endo again? Is a kid worth it? It sounds terrible but it has to go through all of your minds.

Anyway, just wanted to say hello. Good to find fellow gals with the same issues because only we really get it...

Hi. Lizzie. Aged 21. Diagnosed via laparoscopy aged 19. None of my meds work. Still have trouble thinking about endo very long without inducing violent hysteria. Perhaps hanging about here will help.

I last posted a few months ago, but I’m still looking for answers... that is, advice/guidance about managing pain and promoting general physical health.

Pain first.
I started taking Vicodin for cramps one year ago. Vicodin makes a serious dent in the pain. Instead of blacking out, lying on the floor in unspeakable pain for hours, running high fevers, and hallucinating, I now lie around in just plain god-awful pain. It’s a huge improvement, but the situation still sucks. I still miss out on several days of my life every month. Every few months, the levels of pain I experience and the number of days I experience this pain worsen. Additionally, every month, I seem to experience a few more side effects of Vicodin…

Symptoms:
Frequent illnesses
Debilitating cramps during menstruation
Debilitating pain in legs, pelvic region, and lower back during menstruation
Excessive bleeding during menstruation (I can go through 1-2 super-heavy tampons per hour the first day of my period)
Fevers (ranging from under 100F to 103F) during first days of menstruation, including chills and cold sweats
Severe chest pains / breathing difficulties during first days of menstruation
Numbness in limbs during first days of menstruation (my thought is that I am in so much pain that my senses are overloaded, and the rest of my body that isn’t burning up with pain feels numb)
Extreme disorientation during first few days of menstruation
Fatigue
Intense back pain on-and-off throughout cycle
Dull pain in pelvic region most days, sometimes acute
Frequent headaches
Frequent bouts of insomnia

Again, without the Vicodin, these symptoms that reliably attend every period include:
- Fainting/blacking out
- Visual impairments
- Visual hallucinations
- Migraines

Even with the Vicodin + Ibuprofen + Magnesium + heating pad turned to high + bed rest, I still feel like my body will just shut down and die every month. Is there anything else you do to control/manage the pain you experience?

I am not interested in a laparoscopy or Lupron—period. I am not going there now or any time soon. I am 22. I am not subjecting myself to voluntary surgery that won’t necessarily ‘fix’ anything. I am not injecting myself with a drug that will thrust me into early menopause, especially not when that drug has excessive weight gain as a common side effect. Sure, vanity has something to do with that, but my fears mostly center around my belief that uncontrollable weight gain would trigger my old eating disorder, and that’s a risk I can’t take.


Health.
My biggest concern at the moment is the fact that I am sick much more often than I am healthy. I am always either sick, coming down with something, or just recovering from an illness. It feels like if anyone with a sniffle passes me on the street, I come down with a major head cold. I am probably fully healthy about one week per month. During the fall semester of 2009, I was very sick a full 12 out of 16 weeks. In the past year, I’ve had several bouts of sinusitis (lasting weeks each time), three recurrences of the flu (in spite of flu vaccination), earaches, stomach flu, upper respiratory illnesses with terrible chest pains, and countless colds. I’ve been out of university for three weeks, and sick for two of those. My latest ‘cold’ has stretched eight days and shows no signs of improvement. I still have a fever and a nagging cough.

I’m not really sure what else I can do to maintain my health.

I exercise frequently. I walk several miles a day, jog (er, sometimes), lift weights, bicycle, and roller blade. I lead a generally active lifestyle.

I take vitamins every day—a woman’s daily multivitamin with added iron, calcium, and magnesium to ease muscle pain. I had a nasty vitamin B12 deficiency in March 2008 (lasted several days and included stabbing heart pains), so I take vitamins religiously now! I was diagnosed with iron-deficiency anemia in the past, but I think that’s under control.

I eat healthfully. I eat three meals a day. If I’m hungry in between meals, I eat a healthy snack (walnuts, pecans, dried fruit, fresh fruit, fresh vegetables, fruit snacks). I eat a lot of eggs, chicken, deli meat, cheese, yogurt, fresh fruit, fresh vegetables, nuts and legumes, and dried fruits.

I don’t eat junk food or fast food—ever. I don’t eat fried food—ever.

I rarely consume alcohol (I drink about one glass of red wine per month and that’s it). I never smoke. I don’t drink soda—ever.

I do drink a lot of coffee (anywhere from 1-6 cups per day… bad thing?)… mostly to combat chronic fatigue, ironically enough.

Is there anything you ladies do to keep your health up? Any diets, exercise regimens, or vitamins/supplements that boost your health?

Today's xkcd:
http://imgs.xkcd.com/comics/period.png

As a geek with endo, I shoulda worked this out decades ago.

I've been not doing to bad on my first course of Lupron. I have had some issues with nausea, a few hot flashes and my libido has increased.

But I was wondering if anyone else started to bruise easily? Or if it is being caused by something different.

Hi all, I just joined and had a question: do any of you have symptoms of an autoimmune disease? I was diagnosed with advanced endo last year after laparoscopy and now am testing positive for rheumatoid arthritis and might have lupus. I did some net research and it looks like there's a correlation between autoimmune disease and endo. Does anyone have info that could help me? I'm meeting an autoimmune doctor next week but I want to know what kind of medical history would be relevant to bring with me.

Any other information you would share would be greatly appreciated. Thanks for your help.

I was lying in my bed yesterday afternoon, floating in a drugged-out haze, and I found myself thinking about endometriosis from a different perspective.

What if MEN were succeptible to an illness that caused unpredictable violent pain and bleeding in their 'nads and peepees? And what if the initial response they got from most doctors was "it's all in your head" or "take a couple of Motrin and you'll be fine" or "try meditation and acupuncture" or (best of all) "the best option is to have your penis and testes surgically removed"?

I wonder how fast the Major Medical Establishment(tm) would cure such a disease? As measured in microseconds.

i think i'm going to "come out" endo-wise in a bigger way. i made the strategic decision at work to tell only a select few and mainly explain any appointments etc as "a pain condition" or a "chronic medical thing."

but as i read the stats and talk to other folks, it seems more important to have a pithy elevator speech i can pull out of my pocket when someone asks what's wrong. i'm a tough cookie and think the world would be a better place if we all said "ovaries!" more often. i want to be out there if someone else is suffering in silence and wants a buddy to chat with, and i want to spread the word in general about this common but secretive problem.

what do you say?

"cells that grow in the wrong place = pain."
"internal bleeding. no seriously."
"benign cysts."
"lesions. pelvic-wise."
"alien baby."

yes, i seem flippant, but it's laugh or cry for me... i'm asking for real though -- do you have any snappy answers that educate without lecturing?