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Update Surgery #3- Devastated.

Jul 25, 2014 - 11 comments

So I heard back.  I am beside myself.  My surgery is booked October 3rd.  They cannot get me in any sooner due to the high number of surgeries that had to be rescheduled twice due to my surgeon's absence and the fact that she is performing no surgeries in September.  I see her in person on August 8th to try to devise a better treatment plan- an adjustment in hormones...A pain plan.
I am devastated for several reasons-
1.  I have been in acute pain going on 10 weeks now.  My symptoms began in October of last year.  I know it isn't productive but I am pissed at myself that I waited until February to admit I needed help.
2.  I have to go back to teaching full time in September,and as I can barely get out of bed, I am not sure how this is possible.
3. I haven't been able to exercise, do daily household chores, or make love to my boyfriend for nearly 6 months.  Now it is going to be another 3-4 months AT LEAST before I can do these things.
4.  This means I will be on pain meds for over 7 months on a daily basis.  This scares me maybe more than anything...I did not want this to happen.  It is going to be a whole other thing getting off them by then due to the tolerance that is already growing.

This is awful.  I am trying to be positive because at least now I have a date.  But this means another 9 weeks of suffering.  At least.
And of the disease growing.  What if the damage is irreparable by then?
My hands are tied.  I am in shock.  I really, really thought that they would be able to do something given my history.  But they made it clear- they have many, many women in my same position that have been waiting longer and have had surgeries cancelled on them twice.
Damn the Canadian health care system that does not recognize this disease as the life destroying misery it is and grant more funding so that the over 100,000 women in this country that suffer from it can get the help that they need.
I am so angry, I need to do something....But I don't know what to do.  I don't know what to do.

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1742220 tn?1331356727
by meegWpaw, Jul 25, 2014
I know you have said that this is the ONLY surgeon you will consider.

is this still true?

is there ANYONE else ANYWHERE that you could afford?

this seems untenable.  I don't give a fukk who's waiting.  what about You?

I love you Lu


1926359 tn?1331588139
by lulu747, Jul 25, 2014
There is only one other surgeon here who does this surgery.  She is not as good as my surgeon and her waitlist is 4 months for a consult.
The same with the surgeon in Ontario.
The US will not accept out of country patients if they are already under the care of a reputable surgeon in Canada.
This is my only option.
love you too

Avatar universal
by msdelight, Jul 25, 2014
Lulu I'm so sorry to hear this.  I pray that August 8 comes quick at least so she can see you with her own eyes. I pray they move it up.

1742220 tn?1331356727
by meegWpaw, Jul 25, 2014
yeah, maybe they will move it up!!!

Lu this hike was gorgeous tonite, the light was so wonderful, kind of overcast, the flowers so pretty, all kinds of colors, white, red, orange, yellow, silver ... lush and amazing.  I thought of you throughout.  I carried you with me in my heart lil mama ...

I love you!!!  the hike really renewed me.  You helped.  ty


1926359 tn?1331588139
by lulu747, Jul 25, 2014
Awe Meegs.  Thank you.  So happy you went...Cloudy here too, bright blue over the ocean.  Thank you for carrying me with you- I needed that.  Love you xo

Perhaps she will.  I know she feels terrible.  So many women to help, so little time and money available to do so.

I think maybe becoming an endo activist will be my next step.  Today there was a news story in the US about the petition to the Supreme Court that got passed (they didn't want birth control included in Obamacare)  There was a picture of a bunch of women protesting.
One of them held a sign that read
You should pay for my birth control because I have endometriosis AKA Living Hell.

She's right.  It is living hell.
But because it is a disease that only affects women....Well....
Although this isn't entirely true.  What about the men that love them and watch them suffer?  Are unable to make love to them or have children with them because it is the number one cause of infertility in the world?

The founder of excision therapy is a doctor by the name of Redwine.  He was a gyno who became passionate about endometriosis because his wife suffered from it.  He devoted 32 years of his career to researching it and the best methods for treating it (excision surgery)  His marriage didn't last....But his efforts have helped so many.  Just not enough.  It's never enough.


9704730 tn?1405741284
by keek36, Jul 25, 2014
Lulu this is terrible to be sure but like you said at the very least you are on the books so you can look forward to the healing process.  Is there any information out there about the effects of waiting another two months?
Can they at least give you some kind of probability on progression?
I'm sorry there is nothing I can do to help.  Just keep hanging in there!!!  

1235186 tn?1549257619
by atthebeach, Jul 26, 2014
lu I am so sorry. that is absolutely horrible. it sure seems like your condition would warrant you being scheduled in august. it all doesn't seem ethical or very professional. the OR closes in September?
I know her dad died but wasn't she gone for one month?
with no one to cover for her?
is there a way to contact a lawyer about this?
your quality of life is greatly diminished, your business is in jeopardy, damn seems like your life is on the line.
praying for hope and strength.
praying your bleeding gets under control,
keep the faith,

Avatar universal
by vicki595, Jul 26, 2014
It goes without saying that I'm sorry about all of this. I hate suffering and I just don't understand the system but I've been reading more and more...

Also, about Supreme Court/ birth control issue:  The issue concerns abortion ( which should not be considered birth control but is often used that way) and many people don't agree with OBAMACARE paying for abortions.  In this country we have Medicare which is part of OBAMACARE now. Medicare is funded by the taxpayers. Many taxpayers are pro life...and don't like the thought of paying for abortions.  Then there are the small company owners whose religious affiliation precludes them from supporting birth control of any kind so they don't want to pay for it through insurance.  But, people here can always obtain their own private insurance instead of government insurance and with that have more freedom.  

Continue to rest and do the best you can. Always expect a miracle...

3197167 tn?1348968606
by clean_in_ks, Jul 26, 2014
Lu....oh Lu....I have just now been earnestly reading ALL your journals to get myself up-to-date.  I have a lot of things I would like to share...but think I will do that on your latest journal, ok?

For this journal, I wanted to add some input about the whole health care/supreme court deal regarding birth control you made reference to above.  Even here in the US, there are still HUGE misunderstandings about this ruling in favor of our private corporation here called "Hobby Lobby".  It's truly NOT about denying birth control to women.

Many people simply have NOT taken the time to inform themselves....and Hobby Lobby NEVER said they would NOT provide birth control to their female employees.  Here's a quote:

"Moreover, Hobby Lobby never objected to covering birth control per se. It already covers 16 kinds of birth control for its employees. But it objected to paying for what it considers to be abortifacients, which don't prevent a pregnancy but terminate one. The pro-abortion-rights lobby can argue that "abortion" and "birth control" are synonymous terms, but that doesn't make it true."

So you see, it isn't really isn't about "standard routine scripts for birth control".  It's about the government being able to force a private corporation to cover abortifacients.  When not enough facts are learned.....the rumors DO fly!!!
And our media does a fabulous job of misinforming and stirring up the hornet's nests...LOL

The health care system in Canada is VERY foreign to us here in the US and visa versa.....if we don't LIVE with it...we don't truly understand it.  Yours is "free"......but depends on funding.  Thus the delay in the clinic you are going to.
You have said yourself....there's only ONE other surgeon you would trust....and you don't think she's as good as yours.
That "other surgeon" has an even longer backlog than yours does. (4 mos)   And you are dead set....bound and determined to have this ONE particular surgeon do the excision surgery (and I understand WHY, ok?) accepting YOUR medical system in Canada seems the only option.  That is so foreign to us....but yet understandable once you explain it all to us.  You can only do the best you can with what you have been given.
More on your other journal babe,

1926359 tn?1331588139
by lulu747, Jul 27, 2014
Awe ladies you are all right.
First off- in regards to my statement about the Supreme Court Judgment- I wasn't making the reference because I think they're trying to deny women birth control- I am far too well-educated on women's rights and current events to believe that issue is that simple.  I was making a short statement but my point was the woman's sign and what it said- Birth control helps my endometriosis AKA Living Hell.  That was what I was identifying with- Living Hell.  I think as a whole both Americans and Canadians are very fortunate to have the medical care that we do.  Look at us compared to the rest of the world (with the exception being France and the Scandinavian countries) and we have the BEST medical care.

I happen to be blessed (aka cursed) with a very misunderstood disease where the research is very new (32 years is not a long time for medical research) I know it is only a matter of time before this disease starts getting more attention.  As I mentioned it accounts for 60% of infertility in women.  It is a disease that affects you in your entirety.  Unfortunately, diseases that affect only women, especially those that are centred around menstruation, are kinda taboo.  Not very glamorous.  The disease doesn't claim many lives...Though many, many women that suffer this disease wish they were dead when caught in the throes of it.

To answer Debbie's question about the OR and why no one covered for her.  There is a class of endo surgeons in the world that are known as Gold Standard Surgeons.  She is one of three in her practice and she trained the other two surgeons.  Because of the lack of funding and education about the seriousness of this illness (they are the ONLY specialized Endo Clinic in Western Canada) they are only granted ONE day a week in the OR each.  They each perform 3 surgeries a day max- less if it's a complicated surgery.  To give you an idea- my last surgery was 6.5 hours long and there were 17 surgeons in the room observing.  This is very much a brand new cutting edge treatment...And the ONLY thing that gives relief, other than pregnancy.  It gave me back my life for 3.5 years.  I was bedridden for 6 years pre-op.
Anyways, they have to take a month off in September because they are not funded to operate 12 months of the year.  I am looking into if there are emergency cases which overrule this- so far can only see exceptions mad if the disease has reached a life threatening point by obstructing or perforating the bowel or lungs (that's right endometriosis can grow in the LUNGS and requires opening the patient's chest to remove it)

I went off this morning with the idea that I was going to F*C$ my disease and just live my life.  Well....It didn't work out that way.  We went for a lovely dip in the water and laid by the river in the sun which felt glorious.  But by the time I made it to my parent's house for dinner I was in so much pain I could barely speak and didn't eat much.  We were supposed to go to our friends for a backyard bonfire jam (my boyfriend is a musician and these are his bandmates)  I told my man in the car on the way home that I was sorry, but there was no way I could go.  I was in agony and being around people, even family and close friends, makes me feel extremely anxious when I feel this way.  But I told him he should go without me.  I feel so guilty because he's been playing nurse maid to me all week.  He said okay, he would go.  And then I just LOST it....I didn't say anything but I had a full on panic attack at the thought of spending a night at home alone while he was out with our friends.  I'm scared to be alone right now.  This is very unlike me.  I'm actually quite a solitary person and when I'm well, I love my alone time.  Right now I am terrified to be alone with this pain and my cycling thoughts.  But instead of telling him that I just got super short and upset and then he got upset and we had our first real fight.  We NEVER raise our voices at each other, our communication is stellar, nothing like I've ever had with anyone.  Anyways, we both lost it and it was awful.  All the stress, and worry, and fear came pouring out of us.  He feels helpless and I feel helpless and vulnerable and we are so scared about how we are going to make it through this next ten weeks.  We talked it out and he stayed home and everything is okay as it can be but....I'm still scared.

So yes....I am going to explain all of what is happening to me to my surgeon.  Tell her not just about the pain and suffering but about how many aspects of my life this is threatening (ALL)  The thing is....I am sure ALL her patients feel this to one degree or another.  And how could I possibly say that my life is more important than anyone else's?  At least I know that the surgery can fix it.  At least I've experienced the relief and the new lease on life it gives you.

I will still pray for a miracle.  But if it's October 3- 10 weeks away and Thanksgiving weekend here in Canada- then that's what it will be.  And I will just have to find ways to cope until then.
I have an amazing support system that crosses my entire community.  I have a stellar reputation with my business. I do have subs I can call on if things get desperate.  I have full financial support and backing from my family.  I will make it.  Because if that is my option then it is my only choice.  

Thank you for letting me vent.  I need to right now.  I am just a storm of emotions heightened by the hormones I am ingesting.
Love you MH peeps.

Avatar universal
by BritneyTaylor, Aug 01, 2014
U know medical stuff is so expensive and its rediciuls bc people really need treatment and stuff more than anything but yet just bc u dont have enough money shouldn't mean anything it makes me upset bc they make enough to live and if they were in some one else's shoes and everyone would understand. I hope the best happens for u like I said earlier u r strong and u r capable of anything if u set ur mind to it

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