Author Topic: And now for a little TMI  (Read 16943 times)

Debra

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And now for a little TMI
« on: July 24, 2010, 09:09:51 AM »
I'm writing this out partly because I'm trying to come to terms and calm myself down and partly to explain my absences.

In April I had extreme pain Mike convinced me to go to the clinic and I was sent for pelvic and abdominal ultrasound. Came back that I had a left and a right ovarian cyst.

3 ultrasounds, blood tests, 3 months and an ER visit later it is determined that the right cyst left but the left cyst is holding steady and may or may not be cancerous. CA125 is good, but configuration and echo of cyst is bad.

I'm scheduled in March, MARCH! 8 months of frigging worrying, to have a full complete and total hysterectomy.

Because of the four c-sections - forced on me by dumb dumb male obs - a whole other rant -  I likely am full of adhesions meaning all my gril parts are probably stuck to bladder, bowel and who knows what else and thus my chances of having a nicked bowel or bladder -both very serious are multiplied.

As well because of family history [ovarian cancer] I can't have any type of hormone. So straight into surgical menopause. Yay me!

So since I'm stilling living with the cyst and it's accompanying joys I will continue to be on and off again, and I have no idea how long I'll be away around the surgery. Guess it depends how things go.

“Damaged people are dangerous. They know they can survive.” —  Josephine Hart

skdadl

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Re: And now for a little TMI
« Reply #1 on: July 24, 2010, 09:51:19 AM »
I think that waiting till March is just plain unfair, psychologically unfair in the first place, although IANAD, so I don't know what the risks are with those cysts.

I've had both of these surgeries, although separately, in 1999 and 2004. The hysterectomy is easy, three days in hospital and then you walk carefully for a while. Adhesions can be anything from a minor to a major concern -- everyone who's had surgery has them. and a lot of people live with moderately bad ones for a long time; mine were considered "rare and severe" and strangled my small intestine, which is something you really don't want.

When the ultrasoundists first discovered my ovarian cyst, it was huge ("big as a dinner plate"), so the surgeon played games with schedules, traded time with another surgeon, and got me in within weeks -- I forget now how many, but I could look that up -- less than two months. And it was malignant, although you can't know that till afterwards -- it's shocking to hear that afterwards too, but it might reassure you to know that my cyst, huge as it was, was considered only stage I, an early primary, connected to nothing else, even though I also had endometrial cancer at the same time (by definition, hasn't gone anywhere).

All that happened in 1999, and I'm still here. I have met doctors who refuse to believe that I had two primaries unconnected at the same time -- they seem to be saying they think I should be dead by now. Doctors can be funny. But I have the pathology report, eh? One of my sisters took it to her gynie, who had been resistant before, and it convinced him to agree to surgery pretty quickly.

I was already suspicious of HRT, never wanted it, never took it, and the science since is pretty overwhelming -- it is dangerous. The heightened risk of breast cancer is too significant to ignore.  There is nothing wrong with getting old. Aging is not a disease. It isn't pretty, and it can make you sad sometimes to be reminded that you're not eighteen any longer, but I went through menopause without HRT and never noticed a thing.

Adhesions are different. If they're doing something serious to your intestines or other organs, that surgery can really knock you out. Mine sure did, but mine was an emergency -- my digestive system had ceased to work. To put it brutally, if you can't shit any longer, only vomit bile, then you're dying. I didn't know that until it happened to me. I thought I had the flu.

As they've been explained to me: all your internal organs are covered with a film of ... something. Whenever you have surgery, especially abdominal, the surgeon will be touching those surfaces, moving things out of the way, and wherever she touches, she will disturb that film. The body responds by growing these fibrous coverings called adhesions, to cover up the spots that were touched. They may never do anything at all after that. They may become kind of cranky spots, causing, eg, irritable bowel syndrome, which people control with diet for years. In unusual cases, they may grow together, as mine did, and then they have to be cut out.

That surgery is rough because they have to shut down your digestive system for a week or so, which takes lots of tubes and drugs and IVs, and then when you get home your body goes into shock and you get edema and that takes a while to recover from. I couldn't go out for a month because of elephant legs (no shoes big enough), and it was six months before I felt normal, although my superificial veins have never recovered. I think Bacchus has a similar story.

Debra, I'm writing this out in as much gruesome detail as I can to reassure you, odd though that may sound. I don't understand why your doctors are delaying this long. If you want, I will look up the name of my surgeon at Mount Sinai, the one who bumped me up for faster surgery. Maybe she could help, except these days I think you need a referral.

Everything else, though -- it's crummy rotten awful, but you can get through it. I remember walking through the last couple of weeks before my hysto just stunned, feeling nothing. A friend took me to a pretty shop one day and let me pick out -- on her -- a new dressing gown for the hospital (which of course I was never able to wear in the hospital) -- that's the one memory I have of those weeks. And then Rik and I had some lovely weeks where I as invalid would sit in the kitchen reading him instructions for complicated recipes I would normally never make, and he just followed instructions, producing these incredible meals -- I mean, that was great fun, very happy memories.

You know what saved me from the bad surgery? By then, Rik was very sick, in the nursing home. All I could think was "I've got to get out of here. I've got to get back to Rik." That was the worst, but it was also what kept me going.

I think the hardest things for you right now are chronic pain, which is always bad and wrong, and then uncertainty. You shouldn't have to wait till March if you and the surgeon have agreed on a course. But I don't know what to do about that.

lagatta

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Re: And now for a little TMI
« Reply #2 on: July 24, 2010, 10:02:06 AM »
I'm very sorry to hear this, but not really surprised, as I figured that the problem was serious.

No way the surgery can be moved up?
" Eure \'Ordnung\' ist auf Sand gebaut. Die Revolution wird sich morgen schon \'rasselnd wieder in die Höhe richten\' und zu eurem Schrecken mit Posaunenklang verkünden: \'Ich war, ich bin, ich werde sein!\' "
Rosa Luxemburg

Debra

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Re: And now for a little TMI
« Reply #3 on: July 24, 2010, 10:17:22 AM »
@skdadl It actually does help to know that others have been there done that.

@lagatta It was kind of a shock how quickly she mentioned the surgery and started flinging things at me to sign. And then started regaling me with stories of bladders leaking into abdomens and a colostomy bag for a few months if the bowel is nicked and heart attack and the blood clots and giving me a blood thinner before surgery and and and... :o At that point the date became lost in the data. But now shit that is just way too long. Plus Mike has to have a knee replacement in Jan. And might still be fighting back to normal himself.
“Damaged people are dangerous. They know they can survive.” —  Josephine Hart

lagatta

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Re: And now for a little TMI
« Reply #4 on: July 24, 2010, 10:25:46 AM »
It strikes me as far too long if there is a possibility of malignancy. I don't know anything about navigating the medical system in Ontario; perhaps skdadl and toe will have better ideas.

Mike will be fine; a knee replacement is nothing compared to your surgery - anything that opens up our midsection, even if relatively benign, is a major shock to the ole bod. I may well have to have a knee replacement too, though I've improved my walking, reduced pain and all considerably by doing a lot of cycling and strenghtening the muscles and ligaments thereabouts - though not everyone can do such exercise.

I know other women who have been through this and are fine now, but each case is specific of course. There should be some kind of screening system; I don't know how that would be done.

You need hugs :hug but also information and help to better navigate the system.
" Eure \'Ordnung\' ist auf Sand gebaut. Die Revolution wird sich morgen schon \'rasselnd wieder in die Höhe richten\' und zu eurem Schrecken mit Posaunenklang verkünden: \'Ich war, ich bin, ich werde sein!\' "
Rosa Luxemburg

skdadl

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Re: And now for a little TMI
« Reply #5 on: July 24, 2010, 11:04:08 AM »
That can't be right, the "blood thinner before surgery." When you're preparing for surgery, they want your blood to clot and they stop you from taking blood thinners.  As soon as I told my first surgeon that I took a daily aspirin, I was ordered to stop, about two weeks before surgery, for that very reason. ASA is a blood thinner, and you can't take it before surgery or for some weeks after, until healing of the wound is sure.

Debra

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Re: And now for a little TMI
« Reply #6 on: July 24, 2010, 11:22:08 AM »
I know!! It sounded insane to me. Especially as she kept mentioning the vascularity of the uterus and potential for bleeds and transfusions. WTF?
“Damaged people are dangerous. They know they can survive.” —  Josephine Hart

skdadl

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Re: And now for a little TMI
« Reply #7 on: July 24, 2010, 11:33:56 AM »
Well, again, IANAD, and I know there are particular reasons to worry about clotting, but surgery itself is not one of them. The surgeons definitely want the bleeding to stop fast around the cuts they make.

I have no experience of thrombosis, although that was what I thought we would be warding off with our daily ASA. It is a different sort of problem entirely, but a serious one as we age. I still tend to think that, for that reason, blood thinners are a good thing most of the time, just not when you're about to be cut open.

Croghan27

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Re: And now for a little TMI
« Reply #8 on: July 24, 2010, 11:40:47 AM »
That can't be right, the "blood thinner before surgery." When you're preparing for surgery, they want your blood to clot and they stop you from taking blood thinners.  As soon as I told my first surgeon that I took a daily aspirin, I was ordered to stop, about two weeks before surgery, for that very reason. ASA is a blood thinner, and you can't take it before surgery or for some weeks after, until healing of the wound is sure.

FWIW - and just to acknowledge skdadl's post, my clotting ability is monitored very closely. I do not have just a doctor looking at it, I have a whole unit - the Anticoagulation Unit of the hospital. (I have dubbed them the clot people.) It is reflected in a reading called an INR that I have to keep within the parameters of 2.5 to 3.5. (Currently it is 3.8, so I have to adjust my intake.)

This piece of metal that is in my heart is not part of the original equipment of croghan27, so the mechanisms of the body see this foreign hunka something and begin to build clots about it. The immediate danger being that if it does build up some clots and one of them comes loose in the blood stream it may clog something - that is by definition, a stroke.



I was put on Coumadin, which is the commercial name for Warfarin, a rat poison. It kills rats by preventing their wretched little bodies from repairing internal nicks, ticks and bleeding points so they bleed to death internally.

(Mine is kept below that level  :o )

I cannot take ASA in any form, if I have a headache. It would be useless anyway as the Warfarin performs the function of the ASA.
 
"It is also a good rule not to put overmuch confidence in the observational results that are put forward until they are confirmed by theory." -- Arthur Stanley Eddington

Debra

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Re: And now for a little TMI
« Reply #9 on: July 24, 2010, 11:48:55 AM »
so according to this it is common in abdominal surgery and for cancer patients.

http://www.answers.com/topic/low-molecular-weight-heparin

heparin is what she mentioned.
“Damaged people are dangerous. They know they can survive.” —  Josephine Hart

Antonia

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Re: And now for a little TMI
« Reply #10 on: July 24, 2010, 11:45:48 PM »
I am very sorry to hear your news, Debra. I am not at all familiar with these surgeries so I can't offer advice or info. But it seems to me that this is a ridiculous wait for something like this. Unfortunately, a referral would take just as long. But I wouldn't worry about this fascia thing (I assume that's what you are talking about.) Surgery is miraculous nowadays and Hamilton has a great hospital, I hear.
It is when we all play safe that we create a world of utmost insecurity. It is when we all play safe that fatality will lead us to our doom. It is in the "dark shade of courage" alone that the spell can be broken.
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sparqui

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Re: And now for a little TMI
« Reply #11 on: July 25, 2010, 02:22:39 PM »
I'm also sorry to hear about this, Debra. That information overload from your doctor is distressing even if she is trying to be thorough. I don't get why it should take so long to schedule surgery.

I had a fibroid cyst the size of a grapefruit on my ovary that was removed in 2002. It took three months to diagnose it because my file was misplaced. I was shocked to get a call saying that it was urgent that I come in to see the GYN. I remember being given the list of possible complications/outcomes (adhesions, malignancy, etc) and it was frightening. But my guy had a very reassuring manner and explained the likeliness of these negatives to be very, very low. Anyway, I was lucky and although he had to remove more than originally anticipated (ovary and falopian tube) it all worked out well. The pathology report showed no malignancy but that I had endometriosis.

One thing that is really important IMV is that you trust your doctor(s). My GYN was my surgeon and had a great reputation.
If my grandmother had wheels, she'd be a tractor. -- Gilles Duceppe

Toedancer

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Re: And now for a little TMI
« Reply #12 on: July 25, 2010, 02:30:50 PM »
Indeed Debra I'm sorry to hear about your health issues as well.
I've been hesitant to post. My 36 year old upstairs nabe has got fibroids (sp?) all over her uterus and it's expected she will have a complete Hysterectomy. She has had to wait 3 months just to get in for the final specialist decision, sometime in August I believe. After that she has no idea when the actual surgery will take place. She's also peri-menopausal and is having hot flashes and nightsweats already (so young) so she is really fearful of being plunged into menopause.

EI is retraining her as well, and if she misses even a day, she could lose her benefits, so......of course EI couldn't give a shit. The waiting til March in your case is simply cruel. I hear Dr. Margaret Lightheart is an amazing OBY, altho she is very busy.

Fingers crossed for you. The body is amazing, have faith.  :hug
"Democracy is not the law of the majority, it's the protection of the minority." -Albert Camus 1913-1960

Debra

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Re: And now for a little TMI
« Reply #13 on: July 25, 2010, 02:49:16 PM »
I'm guessing/hoping this doc is good.

Here is her bio

http://fhs.mcmaster.ca/obgyn/faculty_member_dube.htm
“Damaged people are dangerous. They know they can survive.” —  Josephine Hart

Toedancer

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Re: And now for a little TMI
« Reply #14 on: July 25, 2010, 03:26:48 PM »
I've never heard of her. Rate Meds gives conflicting opinions.
http://www.ratemds.com/doctor-ratings/90740/ON/Hamilton/Dube

I'm not sure we can trust a lot of what is said, for example, it is normal now to wait 1-2 hours when you arrive for appts with specialists. So like bring a book. We can endlessly discuss the the inadequacies of our health care system, but it is much more positive exp if one knows what it is like presently, so deal with it. The complainers about waiting are not being realistic imo.

Concentrate on the outcome, ask a lot of questions, feel out with your great instincts, if the answers are thorough and she is actually listening to you. Also I found out that 6 months has been standard for the last several years in getting the actual surgery. Make sure you tell her that you are very *flexible* therefore placed on the cancel list. Women who are the sole providers or working f/t cannot be flexible and therefore plan the time off for recovery etc. But there are cancellations that cannot be helped, you being flexible may get you in sooner.  I'm also told there is an Ontario support forum, something called HysterSisters, so my nabe says. I'm not much for support forums, too much praying, god stuff, for me, but maybe you can ask some specific questions about Gynnies.  :hug
"Democracy is not the law of the majority, it's the protection of the minority." -Albert Camus 1913-1960

 

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