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1926359 tn?1331588139

Check check in

Hi lovely MH peeps.  Thought I would check in.  Still no word on the surgery date which I am trying not to let drive me CRAZY!  Haha.  I'm at my busiest time of year as my student's year end show is next weekend.  I am doing okay with the pain meds.  I've managed to keep my dose pretty low.  My lovely new GP and I signed an opiate contract and I am going in every two weeks to evaluate my pain.  I find that if I stay in bed all day until I have to teach I can manage without meds until 8 or 9 at night.  I am still swelling in my abdomen, lymph nodes still the size of golf balls in my groin, still bleeding from my bowel.  I am going in for a sigmoidoscopy tomorrow and so I'm fasting.  They are going to sedate me due to my inflammation and severe pain.  Agh I just want this over.  At least I have good medical support (finally) and great home support, and my support groups, and you lovely folks.  I feel that I will be able to keep my dosage minimal until surgery and then have a good taper plan at the end because I will not have the luxury of c/t because I have to keep working this summer.  It's hard, so hard, but I'm doing it and honestly, I'm proud of myself.  I am a totally different woman than I was three years ago.  About a week ago I had a bit of a meltdown when the pain was bad and told my mom how scared I was, both of the pain and the drugs.  She told me she'd been watching me like a hawk and that I should not fear.  Last time I was a victim.  This time I am proactive.  Just needed to share this.  
xo
Lu
Best Answer
Avatar universal
My dear friend, hopefully Nursegirl, Vic or Kellygirl will be on soon to answer you as im sure they are all nurses or were.

Im so glad you have friends and family support to talk to.
Your partner sounds amazing and must be going through pain with you.
Im going to do some research on this horrible disease so i can better understand it.
Its not nice being poked and prodded by doctors.
You remember to take whatever meds you have prescribed for your pain, this is legitimate pain remember and this doesnt count on your clean time.
You can worry about detoxing later, we know you are using them, not abusing them.
So you do what you have to do at the moment.
I can only imagine what you are going through and to be honest with you, you are the reason ive had 2 good days. When i heard how bad you were, i thought about you, compared myself and thought hey, im not sitting in a hospital bed suffering imense pain. Lulu is. And i picked myself up. All because of you.
I preyed for you again and will every morning and every night my beautiful Lulu.
We are all here to help you get through this tremendously tough time my sweet Angel
xoxo
28 Responses
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1926359 tn?1331588139
Just got some devastating news.  My surgeon's father had a medical emergency and she has left the country until the second week of July.  So I cannot even speak with her for our phone appointment.  I am in terrible pain, feeling lost, and hopeless.  I can't believe this is happening.
Helpful - 0
495284 tn?1333894042
COMMUNITY LEADER
I hope you hugged him extra tight today Lulu~
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1926359 tn?1331588139
I made it through the weekend.  I went on pure adrenaline and the love and joy on my student's faces as they shone like the stars they are.  One more week of full time work and then I have my phone appt with the surgeon on Friday.  My focus is going to be getting into the OR asap.
There is not a single part of me that doesn't hurt.
I'm off to hug my dad and thank him for standing by me, nursing me through detox, and working so hard to help me actualize my dream since I got clean.
Happy Father's Day to all you wonderful dads out there.
Much love MH friends
xo
Lu
Helpful - 0
1926359 tn?1331588139
Thanks Sara- Much love to you my friend.  Wish me well- here I go to dress rehearsal.....Deep breath.  I can do this.
xo
Lu
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495284 tn?1333894042
COMMUNITY LEADER
You inspire me Lulu.  I wish i had half the determination and strength you do~
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1926359 tn?1331588139
No you haven't missed anything.  I keep calling my surgeon's office- they only know the OR bookings 1 month in advance.  At my original appointment with her at the end of March, she had told me that she was hopeful my surgery would be at the end of June.  She also placed me on a cancellation list.  Well, a week after that I got a call from OR booking saying they had a cancellation the next day (Tuesday)  Unfortunately, I could not take this surgery date because I was still bleeding intensely.  The bleeding needs to be stopped for a minimum of one month before this type of surgery, otherwise they can't see what is going on in order to perform proper excision.  It makes the surgery too risky.  The first time I went in for surgery of this type in 2008 she was unable to remove anything because I was hemmoraging so much and I had to go on hormone therapy for 2 YEARS before she performed the surgery that removed all the disease and kept me symptom and pain free for 3.5 years.
If the scope showed endo INSIDE my bowel- this could have bumped me in priority on the surgery list as it would fall into the 'life threatening' category.  This is baffling to me because I also know that adhesions on the outside of your bowel can cause obstruction which is also 'life threatening'.  When I posted 4 days ago, I was very afraid this was what was happening because of my lack of BM and all the blood and mucous.  Since then, my bm's have regulated to normal.  My bleeding has stopped.  My pain is escalating but no other symptoms other than inflammation are present.
My GP and I discussed this at length on Monday and agreed to manage my symptoms as best we can until I speak with my surgeon via phone appointment on June 20th.

I know that this seems crazy to all of you in the US.  Unfortunately, here in Canada we don't pay for our medical care and because there are only a handful of surgeons in the country who do this type of surgery, it is a very long wait list.  Believe it or not, I am high on the priority list due to my previous surgeries and diagnosis.  The receptionist flat out told me that unless I developed a mass that was visible on ultrasound, or suffered a life threatening obstruction- I just have to wait.
The ONLY thing I can do short of camping out on her doorstep (which I have thought about and posted about) Is monitor myself, keep calling to remind them where I am at, and wait.
Believe me when I tell you that this is the MOST frustrating thing in the entire world.  I have a disease in my body that is eating away at me and I want it OUT.
It is interfering with my quality of life, my career which I love, my relationship, and mainly right now with my sanity.
I most definitely have endo on many of my other organs (prior to my last surgery I had it on my bowel, bladder, ovaries, and my ENTIRE uterus.)

Anyways....I am just trying to stay positive here.  As I mentioned my year end show which I've been working towards with my students all year is tomorrow.  I've called in all the help that I can but it is still going to be a HUGE challenge to get through.  My boyfriend wanted me to cancel it.  He wants me to go to Vancouver to the hospital.  But you know- I NEED to do this.  If I am not in a life threatening situation then it is REALLY important for me not to let this disease rob me of something that I have been working so hard for.  And I can't bear to let my little students down.
Next week my entire focus will be on getting my butt into surgery as fast as possible.

Thank you all for your meditations, prayers, and support.  It means a lot and helps me more than you know.
Much Love-
Lu
Helpful - 0
3197167 tn?1348968606
4 days ago, you wrote this:

"I see my GP in the morning where I plan to discuss my issues and my fear that it is adhesions from my endo attaching it to my bowel that is causing these issues.  I am perhaps spending too much time on the internet doing research but all signs seem to point to this.  I NEED SURGERY.  So soon.  If these symptoms persist I am going to go to Vancouver and to the hospital that my surgeon operates out of and not leave until I get surgery.  That is how determined I am to end this.
Thoughts?"

I am truly confused Lu.....in the US...at least with my surgeon....there is a calendar that you are placed on.....you aren't left "just hanging" with NO SURGERY DATE......even if it is 3 months out....at least you HAVE a date that you are assured of.  Is it not like that with your surgeon in Vancouver?

I have a sister that had endo.....very bad endo....by the time they did her surgery, scar tissue they didn't even know was there prior to the surgery had grown and attached to MANY organs including her bowel organs.

Maybe I missed something that you explained along the way....but now that you've had your scope......why can't they give you a surgery date?

I, too, am familiar with intense pain after getting clean...I'm on a medical journey to resolve it.  Unlike you....all my tests don't indicate a surgery is needed....so I hurt for you....but I think it's time to get more assertive with your surgeon.....sorry if I have misunderstood or missed something along the way~
Helpful - 0
4810126 tn?1503942735
Lu,

I'm with Amanda.

You are astonishing! I don't know if this will help but I've been thinking of you when I'm under the weather, stressed & in pain. Your bravery & spirit in the face of all you're going through is absolutely humbling . I'm doing a healing meditation for you right now & will continue to do so. Comfort, Peace & Healing to you, my friend.

Annie
Helpful - 0
1926359 tn?1331588139
Awe Amandag I am weeping.  Thank you so much....I don't even know what I am running on right now....Adrenaline for sure....The love and prayers of my friends and family (including all of you)  I so need a light at the end of the tunnel.  My boyfriend just said to me "You know what?  I really, really HATE this disease".  He shed a tear or two and this is not a man who cries easily.  At least I am not in this alone.  The last time I was.  It is hard for me to share the burden of my suffering.  I am so much a grin and bear it alone kinda girl.  I guess this is making me stronger but right now I just feel ruined.  I made it through another day and just hope I can find comfort and sleep tonight.  My man said I have been screaming and whimpering even in my sleep.  This is definitely bad.
I just want to say to all of you out there suffering- that even if you feel alone you are not.  Human suffering is something we all share in.
Much love
Lu
Helpful - 0
Avatar universal
My beautiful LuLu, please, please get better.
I preyed for you last night, and i will prey for you after i comment.

I am so sorry your going through hell, i wish i could come and hold your hand and give you a kiss and cuddle, and tell you i love you lots.
I wish i could come and sit beside you and tell you everything is going to be ok.
I dont want you to suffer anymore, and i want your pain to just back off and leave you alone.
My lady, my friend, please be safe and know i love you dearly.
I wish i could stop your suffering, but i will prey harder, i promise.
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
Helpful - 0
1926359 tn?1331588139
Guys I just need some prayers here.
My symptoms are escalating at an alarming rate.  I saw my doctor on Monday and she said that all we can do is treat my symptoms (pain and bleeding) until surgery.  She prescribed a long acting form of hydro (still a low dose of 6 mg) she wanted to go higher but I said no.  Now I'm thinking this was a mistake because my pain was so bad when I woke up yesterday it felt like I'd just woken up from pelvic surgery.  The referred pain into my shoulder is insane.  I know this happened because I was active on Monday.  It is my final week of classes with my students before their year end show this weekend and even though I've called in help it is still so much work.  Last night in my teen class a wave of pain hit me so hard that I yelped and hit the ground and began to cry.  I scared the sh*t out of them and I feel terrible about it.  I have always managed to hide my pain.  Please...I'm so scared.  My boyfriend is also feeling scared and frustrated by his inability to 'fix' me.  I'm sorry if I sound like a broken record here but this pain and misery is starting to break me.  It's really stealing my joy and I don't know what to do.
I have breakthrough meds that are prescribed but as scared I am of the pain, I am equally scared to be altered on drugs.  In a job such as mine which is all about being present in the moment, I feel like a failure for needing drugs to function.
I know, sounds messed up right?  I am messed up.  You all have been so great and I know there is nothing anyone can do....But any and all pep talks are welcome.  I've gotta go teach in 2 hours and I am in bed with a heating pad trying to summon the strength to blow dry my hair.
I hurt so bad.  This will pass.  This will pass.  This will pass.
Helpful - 0
1926359 tn?1331588139
Okay so I am a little freaked out.  I have not had a bm since the day before my scope.  I have no appetite and am in a lot of pain.  I am concerned because I only passed blood and mucous when I did my bowel prep and now two days and NOTHING.  I have eaten very small amounts of food and have been drinking a TON of water.  I've used a gentle laxative and only took half my rx'd pain dose yesterday and nothing today (because I was concerned the pain meds and no activity was causing constipation)  I really, really don't want to go to the ER.  This is the ONLY day this week where I get a day at home with my man and I really just want to rest.
Suggestions?
I'm not vomiting or running a fever.  I have bowel sounds and am passing gas.  Maybe my colon is just traumatized from the scope and the prep?
Any nurse's on here have any advice???
I see my GP in the morning where I plan to discuss my issues and my fear that it is adhesions from my endo attaching it to my bowel that is causing these issues.  I am perhaps spending too much time on the internet doing research but all signs seem to point to this.  I NEED SURGERY.  So soon.  If these symptoms persist I am going to go to Vancouver and to the hospital that my surgeon operates out of and not leave until I get surgery.  That is how determined I am to end this.
Thoughts?
Helpful - 0
1926359 tn?1331588139
So as I was such a basket case this morning I called my best friend who is not only also working her recovery, but is ALSO an endo survivor and fellow warrior, and really the ONLY person who understands what I am going through right now.  She gave me an energy treatment and then took me out for lunch and for some good old fashioned retail therapy.  I may feel like crap right now but I look amazing in a bikini...Better than I did at 25.  So, even if I feel like I am dying on the inside it was a little ego boost that I needed.  I am fortunate to have all of you and your prayers, and also fortunate to have an amazing friend in real life that knows exactly what I am going through.  The tears have stopped and I am going to cook a decent meal as I've barely eaten all week.  Right now is the first time I have not been tied in knots in awhile and I'm going to take advantage of it.
This day has really just solidified the whole 'One moment at a time' thing for me.  You never know what the next moment is going to bring so all you can do is stay present, HOLD on during the bad ones, and enjoy the beautiful ones.  I hope everyone is having a good weekend.  No matter where you are in your journey just know that it is not permanent.  Life changes quickly.  And you have more power in the choices that you make than you know.
xo
Lu
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Avatar universal
Amen xoxoxo
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3197167 tn?1348968606
We'll try to be some of that light FOR you for awhile, Lu....until you can see it and feel it again.  I SURE will be glad to log on here one day and read a posted SURGERY DATE for LU!!!  (not near as much as you, though)  (HUGS)
Helpful - 0
1926359 tn?1331588139
Thanks ladies I really just love you and don't know what I'd do without.  I'm a total basket case today.  Feeling traumatized by yesterday and can't stop crying.  I need to get out of the house but even having a shower seems like the hardest thing in the world.  The sun is shining and I know I'd feel better but my body hurts so bad and I feel like I have cement in my legs.
Hard to see the light right now.
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Avatar universal
Thinking of you lulu and just hate all this suffering you're going through...
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495284 tn?1333894042
COMMUNITY LEADER
Oh Lulu,  You are such a remarkable woman.  

With love and respect, sara
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Avatar universal
LuLu, hang in there girl. If you can stand your pain, surly I can mine! I feel like such a wimp. If I had any pills around here I would have already taken them.  That reminds me why most of us need to get rid of all remaining pills. I pray you get your much needed surgery REAL soon. Mine is the 16th of July. God Bless
Helpful - 0
1926359 tn?1331588139
Well Sweetness you sure live up to your name.  It's 1;30 am here and of course I am wide awake since I slept all afternoon after the sedation.  I've finally managed to stop crying but now the pain is bad and I can't get comfy.  My man is very sweet to me and keeps reminding me we are in this together.  The last time I went through this I was married to a man who could give a crap less.  In fact, he used to force me to have sex with him because of his 'needs'.  Didn't care at all that I was in agony and that sex was the last thing I wanted.
Was just thinking about this because it goes to show how far I've come...The decisions that I've made since getting sober...I have to hold on to that during this process.
I think I need to hit the support group more often this week, even though it's tough with my crazy schedule.  I'm feeling traumatized by this medical stuff and it brings up a lot of memories and emotions that are hard to explain, even to those that love me and have been down this road with me before.
It is Endometriosis Awareness month and I just spent some time on my online endo support group reading stories.
The slogan is
We are Strong Because We Have To Be.
This just about sums it up.
My mom picked me up from the hospital today and reminded me that while I was a victim in this situation before, and isolated myself and turned to the drugs- this time I am a warrior.
Tonight I am a wounded warrior, but a warrior just the same.
Tonight I want to send my love and support and solidarity out to all those fighting illness, chronic pain, and addiction.  We shall overcome.
xo
Lu
Helpful - 0
Avatar universal
Lu you are such an inspiration! The things you're dealing with and yet at the end of the day, you are still here to provide wisdom and inspiration. Not many can do that. Keep rockin it and riding the waves because it won't be long...smooth sailing is in your future girl!
Helpful - 0
1926359 tn?1331588139
Thanks ladies- and Vic you did make me smile.  I don't know if it's the sedative they gave me or just the whole traumatic experience but I cannot stop crying tonight.
I really hate that I can't enjoy a beautiful sunny Friday evening.  I am so tired of feeling this way.  I know I'll get through this but right now I just feel really, really defeated.
I love you all and thank you kindly for all your love and support...
xo
Lu
Helpful - 0
4522800 tn?1470325834
LuLu..I am just totally amazed by YOU! Wow!!! The pain you must be in and what you are describing would scare the living daylights out of me..OMG Girl!!
I will be sending some BIG Prayers YOUR Way!! Please keep us updated!
As you can tell many of us are just coming and going, but I still catch these from you..You be safe and do not be in PAIN!! You can deal with all of the detox part later..You will be just fine because this time you are using this for a Real purpose and not for anything other. OH! I sure will be glad when this is over..I can not take this pain anymore..hahaha..Just thought I would make you smile..lol
May the Lord be with YOU!!!
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