Scared to death and have such fear!!!!

Hi Everyone and hope all is well!!! I was scheduled to have a full hysterectomy on Sept.9....then Oct. 20...BOTH GOT CANCELLED DUE TO VARIOUS REASONS.....1.The oncologist that was going to assist my gyno had to go out of the country for an emergency. 2. The Oct. 20 surgery was cancelled due to my gyno having a severe eye issue that required extensive surgery and he was just permitted to go back to work to see patients only (Dec) but not to operate on them. His eye is still not doing as good as they like because something keeps happening with fluid that causes him back in the operating room. God Bless my Doctor...I love him to death...he's a wonderful man. I wouldn't want anyone else doing this surgery but him so please pray for his health/eye to heal so that he is the man going my hyserectomy to begin with. Anyway, now I am scheduled for January 5th. My primary doc had a lot of blood work on me that I did not get back yet except that my blood pressure remains extremely low. We cannot figure out this problem. I am suppose to be wearing this heart monitor that comes with a phone...called life watch. Well....with all that has been going on....I did not attach the thing to me but now I am going to..knowing that I have time to do so. VERY LONG STORY SHORT....I suffer from anxiety anyway but for months its been worse due to all of this. I have a port in my heart because I have endometriosis that requires me to get iron infusions and blood transfusions due to my disease. I had this illness since I was around 15 years of age. I was bleeding for 3 months nonstop and my father took me to the Cleveland Clinic and that is where I had my first laproscopy out of 6 and was detected with endo and lasered for the first time. The laser surgery did help and so did all of my other ones but now I am 39 and to the point that my veins are blown, I went through so many infertility treatments to have a baby and none have been successful and I cannot have anymore laser surgeries due to the adhesions that they cause. Well, besides that, my gyno found an endometrium cyst on my left ovary and a polyp in my uterus and claims that my fallopian tubes are possibly blocked. The bleeding, the infusions and transfusions, the pain, the moodiness, the fatique, are all ruining my life. I was an elementary teacher and am on disability because I truly cannot get out of bed on some days. I'm so scared about this operation and have such fear that there may be cancer also. I am very religious and would take it as though that is God's plan but I know that a part of me would be devastated. I feel anyone would. I get all of my infusions with Cancer patients and I see how they hurt and feel so badly for them. I do have a boyfriend but I am not married at this time. My boyfriend has been sticking by me but it is difficult on him especially with the surgery dates being changed so many times. I have 2 cats and a dog who I love to death and a mom, sister and a niece and nephew. Everyone is tired of me complaining and wanted me to have this surgery years ago. My greatest fear is getting on estrogen. I do not do well with hormones AT ALL AND MY FEAR IS THAT I MAY GO NUTS. I MUST GET EVERYTHING OUT AND CANNOT KEEP ANY OVARIES OR ANYTHING DUE TO THE GROWTH OF MY ENDO THAT IS EVEN ON MY BOWEL THAT HAS ME CONCERNED AS WELL. DOES ANYONE HAVE ANYTHING COMFORTING TO SAY TO ME OR HAVE ANY HONEST INFORMATION THAT MAY GIVE ME SOME INSIGHT ON WHAT ENDOMETRIUM CYSTS ARE AND ARE THEY USUALLY CANCEROUS? WILL I FEEL MUCH BETTER AFTER MY SURGERY? mEANING...MORE ENERGY...HAPPIER? WILL I GAIN A LOT OF WEIGHT? WHAT KIND OF CHAIR/BED WILL I NEED WHEN I GET HOME FROM THE HOSPITAL? i JUST HEAR SO MANY DIFFERENT STORIES AND I WISH I COULD HAVE SOME ANWERS FROM SOMEONE THAT HAS BEEN THROUGH THIS? HOW LONG IS RECOVERY/ RIGHT NOW I AM SO ANXIOUS...I CAN'T EVEN FIND THE ANSWERS TO MY QUESTIONS ON HERE AND THEN THEY ARE IN A ROUND ABOUT WAY....I'M SO IRRITABLE AND IN SO MUCH PAIN I JUST WISH I HAD SOMEONE TO TALK TO TO GIVE ME SOME HONEST...AND STRAIGHT TO THE POINT ANSWERS......I KNOW THAT WE ARE ALL DIFFERENT BUT PLEASE TRY TO GIVE ME SOME INSIGHT ON MY CONDITION AND WHAT I AM ABOUT TO FACE? I DO NOT HAVE A CHOICE AND I AM TRULY AFRAID. GOD BLESS ALL OF YOU AND I HOPE YOU ARE RECOVERED OR ARE RECOVERING AS YOU PLANNED. <> I'M NOT SURE IF I COULD GIVE THAT OUT OR NOT. LIKE I SAID...I'M SO NERVOUS, I DIDN'T EVEN READ EVERYTHING. GOD BLESS EACH AND EVERYONE OF YOU. PLEASE...IF ONE PERSON HAS ANYTHING WORDS OF EXPERIENCE, BAD OR GOOD...PLEASE FEEL FREE TO EXPRESS THEM. THANK YOU SO VERY MUCH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I have to tell you that I cried the whole night before my surgery because I didn't want to have my ovaries removed. I was still having periods every 28 days, etc. I have entrometriosis, with uterine prolapse, mother died of ovarian cancer. I had cysts on the ovaries and one entrometrium, all came back non-cancerous. After surgery I felt so much better! No more pain! I am now 6 weeks out from LATVH/BSO on October 20, 2008. The only pain I've had now is the healing kind! I promise you are doing the right thing! No more mood swings, but the doctor put me on HRT or Estratest the day after surgery. No more bowel problems either. The recovery was easier than I thought, but erally had to take it easy. Please don't be scared. Take care of yourself. You will thank yourself when it's done and you start to mend. Sending you hugs and prayers!

Sandy
Age 46
LATVH/BSO
October 20, 2008

OH Honey Please please try to be calm . I am sure that you will be just fine.. I am actually very excited about my surgery and I have never even had surgery before in my life except a D/C in Aug and that does not really count.

You will be asleep for the whole procedure and you will be just fine. This is the most common of all surgeries on women and they do thousands of them a day all over the world.

Just think about all the great things you can look forward to after the surgery is over.

1. NO MORE PERIODS EVER EVER EVER!!! That alone is one of the best reasons to be

2. No worries about Uterine or Cervical Cancer EVER!!! And if you end up having the Ovaries removed then double for no chance of ever having Ovarian Cancer either!!!!!! Then you have knocked out 3 types of Cancer that you will NEVER EVER have to worry about because those organs are long gone and you will be so relieved afterward.

3. No Cramps, No pain,

Really, after seeing all the happy women on this site, I am even more relaxed about the surgery. Your doctor has probably done hundreds of these over his career and this surgery will be like a piece of cake for him. Take strength in this thought as well. You know your Dr. well and know his record.

My Dr. has been practicing for 40 years and she is wonderful, I trust her completely and she has probably done over a thousand of these surgeries. Practice makes perfect in my eyes.

Keep reading the posts and hopefully you will start to feel a bit less nervous.

Oh my dear... I feel for you! So I'm going to tell you about my experience in the hopes that it may help you, and give you some tips and tricks for the recovery that helped me as well. Before I do that - here is what I most wanted to know: IT WAS WORTH IT. YES I am much better than before and it is only six weeks since the surgery. I had my my TAH due to a plethora of reasons including adhesion's, giant degenerating fibroids, infections caused by the fibroids crushing things (I had a partial bowel obstruction), adenomyosis, endometriosis and so on. I was TERRIFIED in advance and worried that it was the wrong choice, but I was so anemic and sick and in pain ALL the time that really it was just too much to deal with anymore. My family and friends were fed up with me and I couldn't blame them. I know just what you mean about being too sick to get out of bed, and I also know what you mean about watching others go through bad times. It can be very off-putting and scary. One big tip - and I know this is really hard to do - is to try to not think about things too much. Try to distract yourself if possible, and don't second guess the decision once you have made it.

The surgery itself was not near as bad as I had feared (and I have anxiety issues as well so I was very concerned that that would get out of hand due to the whole thing). It was fast, I was out for the whole thing: the next thing I knew was waking up in the bed without that ghastly internal pressure for the very first time in so long I don't even remember being without it. I am still shocked that I literally felt better and I had more mental energy 12 hours after the surgery than I had in the year before it even with that big hole in me ! Rather a surprise I must say, but a very good one. Now one thing that really helped was when the surgeon came and told me what she had found - one of the worst things was really not to know what was going on in there. It eats at a person, and one becomes one great gyn problem in one's own head. It became much easier to know what I was facing re cancer since I had been told I had a good chance of having ovarian cancer. (However, I was immensely lucky and what was thought to be ovarian cancer was a degenerated cystic fibroid that had grabbed the ovary.) I think it is the unknown combined with the difficulties one has already been through that is the hardest to cope with. I got my final results yesterday on the pathology and it was not cancer - merely some precancerous changes so I am now cured - this will never be back and it is an immense relief to get it all out of there before it could hurt me.

Now, as to how recovery has gone. Everyone is indeed an individual, and it can be harder and easier than you expect. I was surprised at how well I healed incision wise, but my pain control was a real issue for me. It turned out that I do not metabolize codeine or morphine so that was a real problem. I mention this just because no, it will not be all sweetness and light. But, there is something you can do about this in particular. Talk to your doctor about the pain management plan in advance so that they know how you react to pain medications and most importantly so that YOU know what they plan and can have a say in it. On the other hand in spite of some huge incisions (needed to get those big nasties out of there and to look for cancer) things healed very well in most ways. I've had problems with cut muscles and nerves shouting at me, but really it is still better than before. Not to mention that this too shall pass... Be careful re keeping things very clean, and that should help. Even if there are complications, they are part of the path to finally getting some sort of life back! The great thing is that afterwards for the most part it is all steps forward instead of steps downwards. That was a novel concept to me!

So... some tips:
Equipment that helps one recover... get some pretty Jammie's and nighties in a size larger than you take so nothing binds. Pretty things to wear really help the mood and get lots so you can change as often as you want. Buy some GIANT soft panties so nothing binds on your abdomen, and if they bother you leave them off. Buy the hystersisters swelly belly band and the abdominal band - they really help. Get some extra sheets for the bed and pile them on (I just folded them in half and lay on top) so when you sweat out the IV fluid the bed itself isn't soaked. Quick to change as well. Get a selection of thin blankets so you can layer while your body isn't sure what temperature it wants to be. Put a good sturdy chair by the bed with arms so that you can use it like a bed rail. Get two small soft pillows for your lap - they are helpful to keep pets off, to prop a sore stomach, (I walked around with one pressed against my tummy for a couple of weeks as it reduced pain a lot), for coughing etc, and if you have two than there is still one there if you drop one or forget where you put it. Buy some cheap extra regular pillows you can use to put under your knees, against your back etc. I was glad I did this as they really helped and I could toss them out later if they got all sweaty. Get a bed tray with legs to put things on so you can have beverages etc to hand that you wont knock over. Get some paper cups with lids and straws so you can have some drinks near you at night that you can drink without having to get up to drink. Have a portable phone near you so you don't have to leap up to get the phone (we bought a used one and it was very helpful). Go to a medical supply store and rent some handles to bolt to your toilet - it will make things much easier to have something to grab onto to lower yourself and support yourself. I'm still using them at times. Buy some loose soft pants to wear as jeans etc are not feasible afterwards. Walmart was my friend! Make sure at least one pair is a size larger (or three) for going home in since you will swell a lot at first. Get a bunch of books or whatever you like to do that is mentally easy and fun in the house in advance. Magazines are the way to go for the first few days since it is hard to concentrate. Spoil yourself a bit!

Make sure to listen to your body and let it tell you what it wants. Don't worry about how others do - follow your own body and what it needs. Eat when it wants to eat and don't worry if you have 6 meals one day and 2 the next. Healing isn't even in pace. Research foods that cause gas and AVOID them for the first few weeks. Everything will cause gas at first so don't be shocked by this - even cold water will do so! Buy some Gas-X and use if needed. I stupidly didn't know I could do this, and finally took some in desperation and it was glorious! Weight gain - very individual of course, but it was minimal for me in spite of my lifelong tendency to gain if I just look at a dessert. Watch your diet and think about what you eat and you should be fine. Healing takes a LOT of energy which helps counteract the lack of activity.

Exercise in the form of walking really will make things feel better!!! Walk as much as is feasible (I circled my living room til I wanted to scream with boredom but it helped.) Walking helps the circulation which helps the body heal. It might hurt or feel lousy at the time but do it a little bit at a time and you will reap the benefits the next day. However, if your abdominal muscles cramp, burn, or spasm STOP! This means you are over doing it. I wish someone had told me that... I kept going on day three and it set off a spasm that was bad. Some days you feel lousy - so lie down all day!

The bladder is often irritated - I found that holding a pillow pressed against my abdomen helped to reduce bladder spasms. It does this in part due to the catheter and in part because there is no uterus to press down on it. This WILL get better! Same for BM's which can be painful as the colon wakes up. On that note, make sure to start right away with stool softeners, prune juice, fresh fruit etc. but DON'T stress about it if it takes a few days to get going again. Once more, the worry about this is worse than the condition. Honestly a few days is normal and won't hurt you.

Wear night things only for at least two weeks so the family knows you are recuperating. Keep a journal so you can chart your progress - it is very encouraging when you think it isn't getting better fast enough to see that the day you walk a mile and feel it is pathetic that you walked 2 blocks the week before! Use a nightlight - it really reduced anxiety for me. Assign family tasks to help you recover so that they don't feel helpless. You may feel bad about the changes that are taking place so go see a counselor. I can't afford that sort of thing normally, but there are places that one can go that take income into account for those who need it. One thing I can pass along is to figure out how you cope - some profit from knowing as much as possible (which means you should read as much as possible since there are tons of good books out there) and some do not (don't read then as this will stress you). Whichever you are, do what goes with that type of coping. The other advice I got was to let yourself feel what you need to feel. Don't be down on yourself for feeling sad, angry etc. Just feel it so you can deal with it. Your feelings are legitimate and valuable - they are YOURS. Who cares what others think (well we all do but ignore others and CARE for yourself).

I hope all this helps! But I can say YES this was well worth it, I am happier, I am mentally clear for the first time in 2+ years, I have a libido for the first time in so long I can't remember, and best of all I can do things to help me lose that extra pound or two that I collected! I can DO things!!! That made it all worth while right there.

Best of luck, we are all rooting for you!!!

Caroline