Don't know what to do..

[lulu747]

Hey folks.  So it's Sunday night at 11;30 of the long weekend.  My man is out of town touring with his band.  I am in bed trying to rest but my lower abdomen is so swollen I look 6 months pregnant.  My lymph nodes in my groin are so inflamed I can barely walk.  It feels like a butcher knife is being stabbed in my lower back and upper shoulder.  I took my night dose of pain meds but it isn't scratching the surface and the pain is making me nauseous.  I sought help on the endo forum but it's so quiet over there.  I am debating the ER but don't think they'll really do much.  I am pretty sure nothing dangerous is happening, it's just I really need surgery and I am still waiting for a date.  What would they do other than pump me full of pain meds and I would lay in an uncomfortable bed in the ER?  Better to suffer here than there I guess. I see a general surgeon for a colonoscopy next week.  God I just feel so alone right now.  Thought if anyone was up they could just tell me a good joke, or tell me I can do this, or just something.  I don't want to call my family and wake them up and all my friends are out of town for the weekend.  I don't use this word very often but I really, really HATE this disease.  Need some hope. xo

[lulu747]

Day 2 of so swollen I look pregnant.  God I just wish I was pregnant.  Worked teaching children for 7 hours.  So hard to keep my pain from them.  It's my man's bday tomorrow and I just want to be able to be present and not suffering.
I am tired of suffering.
But suffering brings strength right?
If it does I am a seriously tough chick.
In bed with heating pad.
Thank you all for the kind words and prayers.
xo
Lu

[EvolverU]

Hi Lulu,

I'm so sorry to hear that you're hurting this way! Do you know what your diagnosis is? I'm a little concerned over the general swelling, enlarged lymph nodes, nausea & pain. If this has to do with Endometriosis, maybe it would be best to get to an ER or see your OBGYN ASAP. A dear friend of mine has been going through something that sounds similar & she's at the Dr.'s right now. Please, let us know how you are :)

[lulu747]

Hey Annie-

Thanks (:
Yes, I have Stage 4 endo and it's complicated.  They fear it has spread again to my bowel.  Unfortunately, I live in a smallish town without a good endo surgeon.  My endo surgeon is one of the best in the country and I have to travel to see her.  She is away until the end of the month so I can't have a consult until then.  I don't want to go to hospital here and risk a surgery with a surgeon who is not an expert, as they can do more harm than good.  So I am playing the waiting game.  I am bleeding from my bowel and going for a colonoscopy next week.  I also have Crohn's disease but am having no other Crohn's symptoms so they are fairly certain this is the endo.  The pain and suffering of this disease is just endless.
Though I had 3.5 years of relief after my last surgery, it is insidious.  And until I get the proper surgery and then hopefully conceive, I have to reconcile myself to this and try to live with it as best I can.  It's really hard, and really isolating.  I am reaching out for support in as many ways as I can.
I worked so hard to get my life back after all the surgeries and subsequent drug use and abuse.  It is terrifying to be going back down this road again as I am scared to lose everything I've worked so hard for.
But that is negative talk and I am refusing to listen to it.
Thank you for your words of support.
I'm off to bake a cheesecake, gather bday supplies and then go teach my teen class how to act.
If there was an award given for acting like you're not in pain when you are- I deserve an Oscar (:
Love
Lu

[vicki595]

Dear Best Actress in a Dramatic Role- How are you feeling?  You have a very painful condition there girlie...anything bowel related is excruciating. So are you taking that pain med more than once per day? You need to, okay? I'm sure you're watching your diet as well but you really need to cover that pain or you'll go nuts!  

[ariley13]

Lulu, from one sick gal to another ( suspected endo, ovarian cysts, and new diagnosis of diverticulitis here!), I feel for you and applaud you on hanging tough. Endo is so difficult to diagnose, and with you having a GI disease too, it just makes things that much more confusing and unbearable.  Please look after yourself and get treatment if you need it. There is no shame in pushing the issue and asking for help, even if it's just to get the pain under control. You should not be suffering like this every night. It's not healthy physically, mentally, or spiritually. We are all here for you and sending prayers and happy, healing thoughts. Stay strong, and quit being so stubborn!!  ;)

[lulu747]

Vicki, Ariley thanks.
I am suffering something horrid.  I am currently swollen so I look 5 months preggers, have lymph nodes in my groin the size of golf balls, lumps between my vagina and buttocks and radiating pain down my leg so bad I cannot walk.  I literally lay in bed all day until the last minute when I have to get up and teach.  I take one pill when I get home, one before I go to bed, and one in the middle of the night when I wake up screaming in agony.  I have spent the entire week in doctor's offices.  The answer is the same:  I must wait for my surgeon.  She is back in office June 6th.  How the he&* do I wait this long?  On the other hand, going to the ER and demanding a rush into surgery could be the most tragic decision ever, since there is not a surgeon in my small town that knows how to excise endo properly.  I am in a very, very difficult position here.  It's not even about the meds anymore.  I am in trouble.  I don't know what I can do except travel to a bigger centre and demand care?  
Seriously, now that I can VISIBLY see the wrath of this disease and not just feel the pain I am over being stubborn about the pills.
My only fear is that I'll develop a tolerance quickly if I don't get into surgery quickly and then I'll have to take more to deal with the pain.  As it is, they are only taking the edge off.
It has been a long time since I've felt this scared or alone.  My man and family are totally feeling helpless to help me as well.  I crawl to the toilet at night.  I can't eat, I can't sleep.
I would not wish this on my worst enemy.
I go for a colonoscopy next week.  I know it won't show anything unless the endo has caused adhesions inside my bowel.  I know the only answer is surgery.  Please, please pray for me that I can get this surgery SOON.  I am so scared and I need it so bad.  I can't fight anymore.  I just can't.
Sorry for the rant....