We are strong! We are brave! We have endo!'s Journal|
[Most Recent Entries]
Below are the 14 most recent journal entries recorded in
We are strong! We are brave! We have endo!'s LiveJournal:
|Sunday, August 7th, 2011|
Is this it?
Is it truly possible? My friend today just got engaged, she has cervical and uterine cancer and is missing 25% of her cervix. Yes I'm happy, but I just can't get over the fact that they've only been together a month or two...is this her desperate way to get kids before her radical hysterectomy? I think it's too soon for this, for her. Her past isn't that great and ahe falls way too fast.
And then look at myself and my boyfriend, we are moving right along pace, almost 10 months together and still growing stronger each day. We are moving in together in a week into an awesome apartment and starting our life together...dog and all(she is the cutest puggle ever!!!)
But then I look at just me, it seems my health is spiraling downward. First my endometriosis, then my fybromyalgia, and now I'm showing symptoms of lupus! I just cannot win! And then I think about down the road, that if I do have lupus what is my life going to be like. Am I going o bed bound with my boyfriend waiting on me hand and foot? Am I still going to be able to work? Will I pass this on to any future children? Will my boyfriend or any man want to be with me? It's just so overwhelming I just am a horrible mess, crying all the time. How much more can I take?
Posted via LiveJournal app for iPad.
|Sunday, July 13th, 2008|
Vulvar Endomtriomas/ Vulvar Endo
I recently had a vulvar cyst removed. Originally my specialists said it was not a batholin cyst as it was quite deep but since surgery and the removal a few days ago she has said it is a batholin cyst BUT it has the appearance of a chocolate cyst or endometrioma so this confused them. They need to get it tested and i will find out the results in a few weeks! I am quite anxious about finding out the results! I have a history of severe, extensive endo and getting an endometrioma in my vulva (of all places) is just....devastating. The surgery was painful and I have stitches in my labia that hurt quite a bit :( I just dont know what to make of all of this. I have had so many gynolgical health issues I cant take it anymore....
Cant take this anymore :(
|Thursday, June 5th, 2008|
TIred and frustrated
I love my period, because it is one of the things that is intrinsically female about me. It reminds me every month that I am capable of creating another life within my body. It is a wonderful gift given to women, the ability to create life. BUT, I hate my period because it causes me to be sick to my stomach, wreaks havoc with my bowels (I've had really soft and frequent bm's for the last two days, not quite diharrhea (sp) but close. I get moodier than normal (which is saying something for a rapid-cycling bipolar), and I'm just a mess. So, I'm torn because on one hand, I love the fact that my cycle is proof to the world, effectively, that I am female (I am woman hear me roar kind of thing), but on the other, I hate it because it makes me so damn miserable!
I had to vent this, and figured you guys would understand this. I've x-posted to my endo groups, sorry for those of you that will get it twice! Current Mood: uncomfortable
|Sunday, December 31st, 2006|
|Thursday, November 30th, 2006|
IMMUNOLOGICAL ISSUES TOLEN FROM FERTILETHOUGHTS
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 )
|Wednesday, November 29th, 2006|
( endo rant (this may get long)Collapse )
x-posted to a couple endo comms, my lj and my myspace
if this didn't all seem connected - i'm sorry... it's been a really long day and i'm sick (again). i should have been in bed an hour ago, but unfortunately i don't seem likely to meet my friend sleep for at least another 30 mins.
|Friday, November 10th, 2006|
Has anyone here had a hypogastric plexus block? One with Kenalog? If you have, please respond here with details/experience. I want the good, the bad, and the ugly.
x-posted like mad
|Thursday, October 12th, 2006|
Couple of questions?
Having a lap and plan to fly out a week after to DC. Is this rushing things? DC will be seeing friends, visiting the CNN bureau and probably lots of nice dinners and sightseeing.
Also how long after the lap should I wait to have sex?
|Sunday, August 27th, 2006|
Thank you all new mods and co mods!!! :))))
Thank you all new mods and co mods!!! :)))) Youre work, dedication and support is really appreciated!!!
Big warm fuzzy hugs!!!
Thank you everyone for your lovely presence and support in the community :)))
Peace and Love to all endogoddesses :)
|Tuesday, April 25th, 2006|
my experience for reference
Feel free to ask questions or contact me through the ways listed on my info. This is kinda scattered, but I wanted to put it out there for reference for others:
When I had the consult with the guy who did mine he was doubting of me and what I was telling him and told me that it was only "likely" that endo was my problem. I mean, I started periods when I was 9 (I'm 21 now) got on Provera at 17 and haven't had periods since, but when I was 14 I started on the pill because I was missing 3-4 days of school a month because my periods were so painful and extensive, then started having problems on the pill. My gyn I was seeing then must have been thinking endo was a possibility but she never said anything and she switched me to the depo and my problems went away until about a year and half ago.
But the doctor who did my surgery was an asshole. He wouldn't take my calls, he just kept calling me in more pain meds - I take pain meds daily anyway and he was giving me ones that have never worked, even though I told him that - and he refused to treat me when I wouldn't take the Lupron. It's like $500 cash price, and I am on free care from the hospital (so I have to try and stay in their network) and they don't cover prescriptions. He knew this and wanted me to get the DL every month for 6 months so that he'd get another $3000.
I had surgery (lap) on Mar 8th which diagnosed my endo. It was on my left ovary and had adhered my bowel to my pelvic wall. Well all the problems and symptoms I'd been having prior to the surgery only went away for about 10 days. I spent a weekend in the ER. It has now been almost two months since my surgery and there is a clear distinction of swelling on my left side, its generally warm-hot to the touch and has me doubled over in pain at least once a day, wakes me up, causing fevers (I have to sit in my underwear with a light blanket and its in the 70s here) to try and stay comfortable. Friday I'm going for a second opinion. I had 3 days of painless sex 2wks after my surgery. Every time I have an orgasm I end up with cramps for at least an hour (and I'm a multiple girl), not to mention the cramps I get just from having sex, even though I love sex. My appetite is gone, it's ridiculous. If I'm sitting watching a movie or laying in bed, I have
to have heat on me. And now all the presurgery discomforts I was having on the left side, I'm getting on my right side - so my right ovary. And I only had 3 days of normal BM after my surgery too, now that's all a mess again. For some reason having pressure on my abdomen (my bf laying on top of me, or my dog resting on me, he's a service dog) can give relief and other days it's complete torture. I'm on the Provera shot because it's worked great for me for three+ years and I needed something that was birth control as well. It also balances out my hormones for me, which means that some of my migraines are hormone related because they get extremely worse than their already disabling state. I take prenatal vitamins actually, and the days that I take them are slightly better days for me - since my appetite is killed, I'm at least getting my nutrition.
Again add this to all the complicating fucking migraines
|Friday, April 7th, 2006|
Alright, I'm kinda confused. If anyone's been following my drama, here's an update...
but first a quick recap:
I had my lap done on March 8th. Was bribbed into eating toast in order to be discharged. Went home, had severe swelling blah blah blah - I'm sure many of you are familiar with all the "joys".
A week later I still had major pain and swelling, my stitches were taken out and the dr who did the surgery wouldn't even tell me where the endo was located, and just kept feeding me pills.
I spent a lovely weekend in the ER - had an ultrasound done, which came back "normal" - I tried to read the notes but the nurse came back too quick! Ended up with severe bruising from the IV...
I found out yesterday that the endo was located on my left ovary and had adhered my bowel to my pelvic wall.
Now to my question:
I never had ANY bleeding at all from the lap. I've been on the depo shot for 3yrs, and am getting my next one tomorrow (last day since the last one for me to get it) - but I've been bleeding consistently since April 1st (haha, wasnt that a lovely mood killer!)... it hasn't been heavy and has just recently started showing up on pantyliners but it doesn't show signs at all of getting any lighter.
Is this something I should be worried about?
I've been having EXTREME STABBING pain in my left ovary - and I take vicodin ES for my head, and valium 3x/day and it's not helping with this. It almost feels like the incision isn't healed (which seems ridiculous) and that I have something stabbing into my ovary.
Should I get a second opinion?xposted to ask_a_nurse & endometriosis
|Tuesday, March 28th, 2006|
my related rant
over the past couple days i've been noticing a lot more advertisements that are so subtly (or not so subtly) damaging or negative to women. i know this is nothing new. i know it's not really getting dramatically better or worse. but damnit, i read this journal and read about all the shit that endo women put up with, and all the barriers we face... and it's like "oh, thanks... on top of all of it, we're pieces of meat. you want us to put out. to be stupid. to not wear an ample amount of clothing. etc etc.."
i really feel like people's concepts of their own capability is so affected by the environment they're in and how they deal with it. how much control they feel they have. i guess i say this because with endo, i just hit a low where everything was so awful, i was in so much pain, missing so much school, so much work, i felt like i had no control. everything that came out of me was exhaustion, a rant, or tears. and this was AFTER surgery. then, all of the sudden, i started making slight changes. i started taking more vitamins, trying out herbal supplements. i started exercising more regularly. i tried yoga. i tried moxibustion. i gauged for myself what was and wasn't helpful. and you know what? i started to feel more in control of my body, and i started to feel a lot fucking better. i'm still trying to find a birth control that works for me, and i still have my lesser days, but i swear, it's been a 180. i swear, it's mental. it's what you believe you are capable of.
i'm not trying to say surgery and drugs don't work (i'm on them), or that i don't let the ads affect me (they do), i'm just saying there's a lot more to it than that. and seeing ads that put women down or pigeon-hole them just remind me of the interconnectedness i sense between these types of things. i give myself a little more time in a day, i nourish my body with rest and food, and voila. a 180. fuck, it didn't even cost anything.
i'll get off the soapbox now. i just needed somewhere to sound that out. 'cuz i'm motherfucking surviving. Current Mood: preachy
BCP insurance question
x-posted to endometriosis:
my really good insurance has just turned into almost-no-insurance, and instead of having an amazingly small co-pay, i now have to pay for my Rx's in full. i'm on a generic BCP called "aviane" right now, but might be switching back to yasmin in a couple of months. does anyone have tips on how to get these discounted, in going to planned parenthood or something? i've never needed BCPs for contraceptive purposes, just for endo, so i'm not super savvy with all the ways. when i lived in alaska, you could go to a women's health clinic and get an exam (which you had to pay for) but then you could get the Rx for free.
what do you think?
|Sunday, March 26th, 2006|
I created this community to help give us a "memories section" which will give us a place to read past comments about treatment options, laps, endo awareness, and more. I will continue to update this page as each year's memories have been added to the memory section.
Although this comm may become a new endo community or it may end up as only useful for the memories section, I hope that everyone enjoys it and feels open and comfortable around their/our own kind... those who have but refuse to suffer anymore than absolutely necessary.
If anyone would like to help with the memories, please let me know, I'd like to get everything done before 4/1, sooner if possible!
The comm is working on:
2003 (thanks 0_tammy_0!!!)
Jan 1-June 30 2004 (thanks angry_phoenix!!!)The comm still needs:
July 1-Dec 31 2004
all of 2005
(this won't take tons of time since most of the posts are rants/whines, which aren't memory'd)The comm has finished:
2006( if you've been assigned above, click here!Collapse )