Okay...I think I'm scared...surgery at some point UPDATE POST 18

I really didn't think this was bothering me, but after getting easily overwhelmed at work and having a crying spell each of the last two days, I had to admit it was bugging me more than I thought.

Bear with me, I'll recap in point form:

1. Went for my med exam last fall. A fibroid seemed a little big, so off I go for an ultrasound. Fine.

2. The ultrasound tech spent a lot of time on my left side near the kidney, and asked if I had had any pain there. NONE.

3. My Dr's office says the theory is that a fibroid is pressing on my ureter. I get referred to a urologist, for which I wait just a couple of months, and go in for my 10-minute cystoscopy. This becomes a 40-minute uncomfortable deal (a few pinchy ows that weren't fun - the rest was ok) as Dr C said my "left kidney is not draining well at all". :eek: So he put a stent in. I could see the pic on the screen above me...and could see the kink straighten out.

4. Dr C. is referring me to a gynecologist, and has ordered a CT scan "urgent", as whatever it is (fibroid) is starting to bump into my bladder as well. Maybe it always did, but the ultrasound didn't catch it.

So, from the research I have done, and given my age (50) a hysterectomy seems likely. At the very least, there will surgery to get this Fibroid That Ate New York out of there.

I thankfully have had no major health problems most of my life. I had the kid things - adenoids (they were supposed to get my tonsils, but never mind :rolleyes: ), then tonsils and also a broken leg while skating. Pneumonia when I was 1 and then 9. Everything was over before I was 10.

Had nose surgery to help nosebleeds about 12 years ago and that has been it.

So anyway...here I am at my PT family, and my mom is going to spend more time with me - my friend Irene has been great, and my guy very supportive. I guess I better stop 'being strong' and acknowledge that this is a big change for me, and that it is taking a while to sink in. It erupts in easy tearfulness. :(

Any experience you can share, I would appreciate.

Thanks...I know I have family here too, and I have to not hold this in.

Are we allowed to link to other websites on here? I hope it's alright...
http://www.hystersisters.com/ is an awesome site for you to read. They have pre-op all the way through many years post op.

I had to have a hysterectomy at 29, due to endometriosis. The "cysts" were huge - 20cm on my left side, and 13cm on the right side. This site was a godsend... along with dr's who are totally awesome!

If you want to talk more, pm me... or email me :) I don't mind.

Oh poor you! You know we are all here for you both in writing and with prayers so stop being a stoic and lean on all of us! Try not to worry and it will all get fixed soon I hope! ((((Catty))))

I just had a hysterectomy back in Sept. for endometriosis. The dr. found a surprise fibroid during surgery but it wasn't too large or causing problems yet. I had my ovaries removed as well and I can tell you, my surgery was the easy part - getting my hormones worked out isn't (I'm 39 years old). On top of it all I've been having severe pain like a groin pull and went back to the dr. yesterday only to find out it is probably the endo returning. Great! Anyway, what kind of hyst you have will make a huge difference. I was very lucky and was able to have a LSH - total laproscopic. It was very easy on me and I was released to go back to regular life in two weeks. It took me a couple of months to get back to 100% but like I said the surgery and it's recovery was the easy part.

I highly recommend the hystersister site. It was great help to me before, during and even now while I try to get my hormones straightened out.

Good luck and if I can help please feel free to PM me.

I have recently found out that I have three fibroids, one being close to my right ovary. This all started with some alarming bleeding on January 6th. Keep in mind I am post menopausal so this was a very alarming thing. The ultrasound found the fibroids and the doctor suspected they might be responsible for the bleeding but performed an endometrial biopsy just to be sure. When you are living with the thought of possible cancer of the uterus, having a hysterectomy was not a concern for me one bit. I just wanted it out of there if that was the case. Thank God, the biopsy was negative and the fibroid near my ovary was deemed to be the cause for the bleeding. He feels I have had the fibroids for years. Why this particular one chose to bleed after all of this time is amazing to me, although my doctor said its location (subcutaneous) is the reason. He said we don't need to do a thing about this and told me to relax. :) Surgery is always daunting and a bit scary. I hope the others here, who have gone through it, will be an encouragement to you. :)

I have no personal experience that I can draw on to help you but want you to know that we are all here for you and will be keeping an eye on you :D

OOOH surgery is always scary. I cant say that I really know what a Fibroid is but hopefully it is just a simple removal and you will have no other problems from that.

Positive thoughts and prayers.... surgery is scary and recovery can be a challenge sometimes. Good luck and all the best to you.

I'm sorry, I don't have that sort of personal experience to share. But I did have the breast mass removed last year and recall how terrifying that whole experience was, so I can relate to your emotional ups and downs. You can stop being strong, we will do if for you. If you ever need to vent, talk, cry, scream know that I am here for you. I send you a great big HUG and Sasha sends some delicate doggie kisses.

I had fibroid surgery a couple of years ago and the MD removed 20 fibroids (I was told that the biggest was the size of a baseball). The surgery part of it wasn't "fun" and it took me awhile to fully recover but I wouldn't hesitate to recommend it. Life is so much better after the fibroids were removed! If you have any questions feel free to PM me.

(Remember you are entitled to a second opinion if you want)

I don't know much about these things, but I hope there's no reason to be concerned. If you do need an operation, remember they're used to doing it very day, and they're very skillful. Try not to worry.

Wishing you all the best! :)

Catty1,

I started having tumors when I was 18 (I'm now 54). It was routine for me. Believe me, I truly understand your feelings. My doctor told me that there was only one way to find out if it's malignant (99% of the tumors ARE non-cancerous), via biopsy.

After so many years of those suckers, I was given the hysterectomy option. No more monthly periods, PMS, cramps or bloating?????

SIGN ME UP!!!!

I had it when I was 45 and have never regretted it. The first 2 weeks are the worst. But then you notice getting your energy back a little at a time.

I'm here for you. I have free calls to Canada. PM me with your number and we can talk.

(((((HUGS)))))

Donna

(((((((hugs, Candace)))))) No wonder you have been emotional! I'm glad you now know what is going on and your doctor is getting right to taking care of it! My sister had endometriosis really bad and several surgeries ... one was "emergency". Finally she had a hysterectomy and hasn't had any problems since! Please don't hesitate to draw on your friends here for support!

Kim

My friend Barbara (cat person but not a Pet Talk person) had a hysterectomy because of a different (not endo) problem, and she said to me ... "this hotel ain't accepting guests, never has, never will, so why not tear it down?"

A different perspective on the matter!

You'll be in our prayers, of course!

I had my hyst when I was 30 - endometriosis and fibroids. That was 37 years ago. Have I missed it? Not even once!!

Facing any surgery is scary, but use your resources - those of us here, and your friends and family.

Be positive - you will be fine.

I know just how you're feeling. I had a total hyst. for fibroids 1 1/2 years ago. Same thing - one was pressing on my bladder. (I had a cystoscopy too - and was in tears in pain- the nurse said "It doesn't usually hurt patients at all" Duh. It was the worst part of this whole thing.) I was really scared at first - I've never had surgery, wondered how it would be, what would happen nex, etc. That hystersister web site is a great place - I spent a lot of time on it getting answers to questions. I am SO HAPPY I went through with it. I feel at least twenty years younger! (Isn't that good news?) And no problems afterwards. I spent a lot of my recovery time on PT, LOL!

I'm sorry to hear this.:( I'm sure that everything will go well. Both my mother and grandmother had hysterectomies because they had fibroids and heavy bleeding. My mom was only 40 and she was so glad to finally be period free.:)

I'm 44 and last year I started having very painful cramping and much heavier periods. I had a pelvic ultrasound and they found 2 small fibroids. I also had another procedure where they inject saline solution into your utereus and this gave me very bad cramps. The doctor said that everything looked normal.

In Jan. I had a hydrothermal ablation which is when they burn the lining of the uterus. This is supposed to stop heavy bleeding and cramping. I still won't know if it worked until a few more months go by. If I start having problems again then I too will be having a hysterectomy.

I hope that everything will go well for you. We're all here for you and you'll continue to be in my thoughts and prayers.

Thank you to EVERYONE who has posted and anyone yet to post.

It is just so great to have support here, and hear others' stories.

Cyber-sibes, I too had called the Dr's office because the letter said a local anesthetic is used, and you can drive home afterwards. YAH RIGHT! :D

Of course, my procedure was more involved because of the stent....but the pinchy owie stuff would have happened anyway!

Thank goodness my mom and I had arranged that she would drive me there and home!

Ibuprofen and Tylenol were my friends for a couple of days (small doses)! :)

OK. (Sorry, a bit long...)

I thought this would all be decided next week, after my CT scan on Monday.

Saw the gynecologist today. I was kinda wound up about it. I have been healthy all my life, and no symptoms with my Fibroid That Ate New York (not a bad misnomer, as I found out).

Nurse Trudy - a real gem, calm and supportive - said that Dr. M wanted to do a Pap, and also an endometrial biopsy.

I started sobbing, I didn't want to hurt, this was getting so serious so all-at-once - Trudy understood. She said of course it was overwhelming when everything has been fine, and all of a sudden things happen quickly.

Dr M was calm and fine as well - I had never even seen a real GYNECOLOGIST in my whole life! His external exam confirmed the fibroid for him - he said it was the SIZE of a FOOTBALL!!!!

Never mind eating New York; Toronto is dessert!

Anyway.

Hysterectomy. Called a "sub-total". My mind flashed to my retail days...

Ovaries - we'll discuss that later. I want them in. He says because I am 50, that they may shut down in a year, or maybe 5. HECK, my recent FSH test showed NO signs of menopause; I am still waiting. I'd rather have the ovaries decide that than drop into instant menopause!

I asked about laporoscopic hyst. He said that he doesn't do them, but is very willing to refer me to one or two people that do them. That is, if a lap procedure is suitable for something this size.

"What's your method?" I asked.

"I give you a big ugly scar that runs up to your navel," he replied. I had to smile at his straightforward response - it was even so slighly humourous. He would do the vertical incision since the fibroid is on TOP of my uterus. The "smiley" won't work so well.

May 22nd is the day.

Anyone else here had laporoscopic surgery for a football and uterus?

Thanks for listening....this still has an unreal quality to it...I didn't think the decision would be this soon.

(early May, I am inviting everyone over for a NO MORE PERIODS party! Wanna come?)

Oh Catty.......I don't know what to say except that you are in my prayers. I'll call you on Sunday after I get home from shopping... ;)

{{{hugs}}}

Candace due to cancer I have been there done this. BREATHE. It gets better, and if you ever want to talk in person Pm me I will give you my number.

In the meantime HUGS woman!

Love
Kym

Holy cow! My fibroids were only the size of baseballs and tennis balls, LOL! But I did get the whole shabang removed, ovaries, cervix, uterus, everything. I was worried but there are benefits - (no chance of cervical cancer, which killed my grandmother, no ovary problems, no more prolapse) I wasn't in menopause either at the time. I am doing HT, and I love it - no periods, no hot flashes, no night sweats, no emotional swings (well, ok, maybe a few, but they're not hormone related). The HT dose is reduced over time to simulate the natural shutting down of the ovaries, so you don't instantly hit the menopause wall. I have a cute little smiley that you can hardy notice. From the sounds of the size of your problem, I wouldn't thing lapro would be appropriate, but your doc will give you a more knowledgable answer. Hey, May 22nd is a great day - it's the day I had my first child! I will keep you in mind & prayer that day :)

I have a good feeling that this is going to turn out fine for you. The incision they had to make for me the first surgery - it's 11 inches long. You can baely see it anymore. I think that's an upside. Plus, the no more periods is certainly a great thing!

I'm with the others - if you need to talk, pm me and I ill give you my #.

Hugs,

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no emotional swings (well, ok, maybe a few, but they're not hormone related)

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Shoot! There go my excuses!!! :p

Thanks, all...yeah, I think the incision is the way to go.

BTW - thanks to those who posted the Hyster Sisters site. It is great! :)

HUGS!

Gee whiz, football-sized - that's no laughing matter. How fortunate it hasn't given you any trouble before now.

You will be in our prayers, that's for sure!

Karen - I will post another thread on this topic, and I hope you will allow it.

I am going to tell every woman I know to make sure they get their regular checkup, even if they feel fine.

I had NO pain or symptoms, my periods were regular - and yet here was a football-sized fibroid seriously affecting the draining of my left kidney!

Get a checkup even if you feel good - you'll catch something early.

(It had been two years since my last Pap, and I went last fall...I 'just forgot'. I don't want to go to 'what might have been'.)

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Originally Posted by Catty1

I had never even seen a real GYNECOLOGIST in my whole life!

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You're kidding?

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Originally Posted by Catty1

(early May, I am inviting everyone over for a NO MORE PERIODS party! Wanna come?)

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You might want to check w/your doctor about hormone therapy/fluctuations/what happens when estrogen is cut off without any warning - it's not fun.

Good luck on your surgery and I'm glad they caught it.

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You're kidding?

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Nope. All paps were always normal, no other problems...it was actually the urologist who referred me to the gynecologist this time.

I know many women have a gyn as their regular doc, but I didn't.

I am hoping to keep my ovaries, even though they may shut down for a while after surgery.

Also - I never had UTIs like many of my female peers.

Just lucky, I guess. Maybe being a bit of a health food nut helped! Who knows?

Thanks for the good wishes! Much appreciated! :)

{{{{{HUGS}}}}}

I hope all goes well and you're back up and running around soon. :)

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Originally Posted by Catty1

I am hoping to keep my ovaries, even though they may shut down for a while after surgery.

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My mother had a hysterectomy when she was in her 30's. Her ovaries were left in. When she was 75 she developed ovarian cancer which took her life. Because of this having happened in my family, I have to encourage you to to speak to your doctor about the pros and cons of leaving those ovaries in. You are very close to menopause as it is and you are having the surgery anyway. I'm just thinking the benefits of taking them may outweigh the negatives.

Thanks, Rachel - there is no history in my family of ovarian cancer, though my mom had cervical cancer and had her hyst when she was about 38.

It's now thought that the cerv kind is caused by the papilloma virus, carried unwittingly by men...poor guys!

There are a lot of pros and cons to keeping the ovaries....even blood work shows I am not in MP yet, so that's a factor too. Will discuss with my GP.

My surgeon/gyn is leaving that for further discussion. Just getting hit with "pick your date" was enough to deal with for one afternoon! :D

Wow Candace! What a day, huh?!


What ever you decide, good luck and you know that we all will be here for you!

I had a hysterectomy when I was in my late 30's, let me tell you that was the best surgery I ever had! But then again I had horrible periods :eek: so I was more than happy to get rid of them.

Keep us updated, and you are so right about everyone getting checked! I now have a Post-it at the front of my calender, it tells me the months that I have to: get my eyes checked; OB/GYN yearly; mamogram; etc. It is so important for us to keep on top of our medical history!

I had a cantelope sized fibroid and my Dr. was not able to do anything but TAH-BSO (total abdominal hysterectomy/bilateral salpingo oopherectomy) through a vertical incision. They took the whole works. My Dr. didn't want to leave ovaries - says she'd seen too many cases where they can cause trouble later.

None of it matters - surgery, incision, hospital, etc. My surgery was in 2001 and I started feeling better fairly quickly afterwards. The surgery was really worth it for me.

You are right about HysterSisters! Really helped me prepare before I had my surgery.

My mother had to have a radical hysterectomy in her late sixties because of a prolaspe, they took the lot, no use keeping it at her age, and she had it done the laproscopy way, honestly i was really scared about her surgery, she was watching television that night after the operation, it was truely amazing, and really a breeze, i had seen many performed the abdominal way when i nurse aided in a private surgical hospital, and they were not nice, but that was over 35 years ago, and things have changed, still it takes a lot longer to recover, but either way you will be in good hands, and when it is all over I am sure you will be much healthier . good luck, i know how scarey it all is.

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Originally Posted by Pawsitive Thinking

I have no personal experience that I can draw on to help you but want you to know that we are all here for you and will be keeping an eye on you :D

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I second that! Here for you babe, all the way. Just can't help but say, never get a biopsy without anaesthetic. I had one 2 years ago. The " so called specialist, woman gynaecologist " was a sadist. Once I finally got and kept the appt. Dig this, they tell my to put on me gown, I'm up in the stirrups, bitch I've never met who is a "specialist" says.... do you want an Advil, this is going to be painful. How is that going to kick in, I'm already naked from the waist down, what good will that do me. I said, no, I'll be fine. I have a very high pain threshold. I do. Well she cut a chunk out of my ...not sure what. Something way up inside my vagina. I screamed so loud in agony I almost gave myself a heart attack. I was nautious for two days. All my trust in gynaecologists is gone forever. What a rotten human being. I'm not sure I could inflict that kind of pain on a serial killer. Pretty sure that's a big fat,no. It was unbearable and she should have her licence taken away. I remember apologizing as I was leaving for screaming. It was beyond torture. I did not know any better. I simply trusted her. Someone should sue her behind. It was a revolting experience and very sad. One nightmare for the books, that one.

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Originally Posted by mon

I second that! Here for you babe, all the way. Just can't help but say, never get a biopsy without anaesthetic. I had one 2 years ago. The " so called specialist, woman gynaecologist " was a sadist. Once I finally got and kept the appt. Dig this, they tell my to put on me gown, I'm up in the stirrups, bitch I've never met who is a "specialist" says.... do you want an Advil, this is going to be painful. How is that going to kick in, I'm already naked from the waist down, what good will that do me. I said, no, I'll be fine. I have a very high pain threshold. I do. Well she cut a chunk out of my ...not sure what. Something way up inside my vagina. I screamed so loud in agony I almost gave myself a heart attack. I was nautious for two days. All my trust in gynaecologists is gone forever. What a rotten human being. I'm not sure I could inflict that kind of pain on a serial killer. Pretty sure that's a big fat,no. It was unbearable and she should have her licence taken away. I remember apologizing as I was leaving for screaming. It was beyond torture. I did not know any better. I simply trusted her. Someone should sue her behind. It was a revolting experience and very sad. One nightmare for the books, that one.

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Um...thanks, mon, but I had my hyst back in 2007....