Rapid increase of symptoms

[lulu747]

Hey y'all.  So I still don't have a surgery date, though i am booked for a scope on Friday morning to see if they can identify why I am bleeding from my bowel.  I had a crazy out of nowhere period last week even though I am on progesterone to stop the bleeding.  My surgeon advised stopping for 5 days, bleeding it out, and then starting back at triple the dose.  I was a little scared because the hormones really mess with my head.  I get depressed, anxious, and weepy.  So I doubled it instead.  What I'm worried about is that my symptoms are escalating at an alarming rate.  6 weeks ago I was still able to do the basics in life, even have intercourse in certain positions.  Now I cannot walk, lift anything, I can barely stand on my feet, the only time I am not in pain is if I lay in bed all day with my legs elevated.  This is not really an option for me as I own a theatre school and am gearing up for our year end performance next week.  Also, every night by 7 pm I am swollen to the point I look 6 months pregnant and the lymph nodes in my groin are the size of golf balls.  Before I started the hormone my pain was entirely left side and cervical.  Now it is right side with butcher knife like pain in my lower back, upper right shoulder, and cervix.  Everything hurts, even sitting.  They can't tell me when I will have surgery, only that it will be some time this summer.  I'm feeling so hopeless right now.  I am finally taking pain meds to deal, I was scared to for the longest time because I was heavily dependent on them prior to my last surgery and it was hell getting off.  I guess I just need some hope.  It is endometriosis awareness month.  I send love to you, my endo sisters, and thanks for listening.
Lu

[ticked]

Can you ask them for something stronger?

[lulu747]

My surgeon has left the country until mid july! (family emergency)  My pain and symptoms are escalating so rapidly my GP has put me on constant pain meds.  They help but are aggravating my tummy and bowel.  My rectum is torn apart despite the stool softeners I am using.  I am still bleeding from my bowel.  I go over to the clinic for a pain seminar and a one on one with a pain psychologist on Wednesday.  I am literally tearing my hair out here.
The pain and nausea is so intense I feel like blacking out half the time.  I can't barely wash my hair or do a load of laundry.  My busy work schedule has lightened for the time being (thank God) but still no surgery date.
What should I do???  I can't wait.  I don't know how much longer I can take this!

[ticked]

I am here for you and I wish you luck on your testing you are having done. I hope you get answers and a surgery date soon.

[lulu747]

I had intercourse on Monday night which was probably a stupid idea but I get so PIS*^ED off at this disease and I just wanted to reconnect with my man as it's been so long.  Well, ever since I feel like I just had surgery.  I am raw.  I am so inflamed and the pain so intense that the pain meds are barely touching it.  I am working the busiest week of the year for me and I am bursting into tears on a regular basis because the pain is so intense it takes my breath away.  My heart goes out to all of you my fellow endo sufferers.  This is a terrible disease.  I still have no surgery date.  I am considering going over to Vancouver where my surgeon is and trying to get admitted to the hospital in hopes I will get surgery faster.
My fear is that all my major organs are involved and as my symptoms and pain are escalating at a crazy rate, I don't know how much longer I can live like this.
Being strong because I have NO other choice.
Lu

[ticked]

I hope they find some answers

[lulu747]

the scope showed NOTHING.  The prep was awful.  I couldn't handle the enema it felt like broken glass going in and it made me puke, and I didn't get through the second one.  All i passed was blood and mucous.  This has never happened to me before as I've got Crohn's disease I have done many bowel preps and many enemas and never experienced this.
They sedated me but I was so wound up that I did not go out and saw everything.  My colon looks totally normal.  So I am confused.  Really confused and lost.  No answers and still no surgery date.  I want to scream right now!!!!

[lulu747]

Yes I've had four ultrasounds in the past 3 months.  Nothing showed except 'unexplained inflammation'.  My scope is tomorrow- they did it as an emergency because the GI doc was the one that was in charge of my care in 2007 when I almost died from a drug reaction to a med used to treat my Crohn's disease.  He's lovely and has a daughter my age who is also a dancer and so he understands what I am going through.  I have a phone appointment with my surgeon on the 20th.  Every day I just check my phone a million times to see if the OR booking has called.  It's so crazy to have to wait this long and see yourself slowly going down hill.
No, the symptoms are not new for me since going on the hormone, they are just escalating.  I thought the hormone would lessen the symptoms but I guess that is not the case.
I guess there is nothing I can really do except wait.
UGh.

[ticked]

Did you say you had any cysts I can't remember? Have they done a recent Ultrasound?

[ticked]

Did all these new symptoms come after going on the progesterone medication? Like the groin ? The direction it is going is normal getting a scope and I am glad they have booked you so soon. It is usually a long wait for one.

I would suggest in the meantime getting a second option elsewhere even a 3rd option. The medication could be making it worse for you.

Just so you know the only way I felt sane in anyway on Endo meds was by taking antidepressants. It helped with the side effects of that. I am on prozac not since Feb and I think that is why my meno symptoms and depression is not so bad as I expected it to be.