question about hysterectomy - Hysterectomy Message Board

NY 1009 · 10-08-2005, 07:51 AM

I have my sugery date set up for oct.18th for a total hysterectomy due to chronic ovarian cysts that aren't going away and have been there since last nov.of 2004. also adenomyosis.
I only have one ovary and tube left since the the other one was matted to my bowels and was in necrosis stage plus tube had to be removed because of para tubal cysts.
this was back in 2000.
I've been living with pain month after month with the cyst growing and leaking and even bursting.
enough having to worry if it may be cancer.
cancer runs in my family.
I wrote an entire history story to you all ealier and it didn't post for some reason. so if by chance it eventually gets posted I don't want you to get a duplicate.
I won't go into detail again until I find out if it posts or not.
I am scared. and I haven't really given it much thought about the hysterectomy.
the doc wants to remove the uterus, ovary, tube and even cervix since I had bad paps in the past.
I feel as if I'm rushing into this. I had the opportunity to do it last yr and didn't do it.
my doc says I'm a perfect candiate for hysterectomy and she normally doesn't like to do the knife thing unless absolutely necessary.
I will go into sudden menopause. so I'll take the HRT. I'm not afraid, I'll just be diligent with annual mamo's and breast exams.
I'm concerned about how our bodies will age after our hormones are gone.
do you age real quickly?
they say your bodies change so much, from our hair, to our skin, to our sex drive, to gaining weight and face becoming paunchy.
is this true?
I guess you could say I'm vain.
I'm 45 yrs.old and still cycling normally.
some woman dont get hot flashes or suffer at all in menopause. my doc said everyone's different.

my other question is: why is recovery so long? does it really take six to eight weeks for recovery?
my boss won't like this. she may not give me back my job.
money was the other question.
did any of you have to go on sometime of a short term disability in order to keep having a pay check come in?
we depend on my check soely. it's the only ck that comes in to pay the bills.
if for some reason I'm denied coverage, I won't be able to get the hysterectomy.
plus I heard my boss can't fire me because FEMA protects people like us who need to have surgery.
my health has not been well for about one yr.
I've lost 75% of body mass for unexplained reasons. I lost a total of 30 lbs. without even trying.
I use to wear a size 8 and now into 0 or size 2 clothing depending on manufacturer.
I eat. I eat high caloric foods yet I still can't gain wieght. My stomach became bloated the other morning like I"m pregnant and my tummy is usually flat as a board. my gyno says it's gastro related.
yet I can feel it's due to my ovaulation. I have two chronic cysts that have been there since last nov. of 2004.
no explanation for the weight loss issue.
I'm weak and always tired. my blood panels are fine, my thyroid is fine, my adrenaline glands are fine. we can't find anything wrong other than these cysts and possible adenomyosis.
I go for constant follow up trans vag ultra sounds and the ovary is still enlarged.
I have had acsities in upper fundus and in the cul de sac. caused by what we think is leaky cysts. not sure though. there is slight fluid around the sac of my heart which no one has even talked about why it's there.
it was reported in my last cat scan.
my cervix is markedly enlarged which the last time the radioligist said that he said I have possibe cervical carcinoma.
I had a laparascopy done to drain the cyst and she did a cone biopsy. but all was fine.
that was back in 2003.
the radioligist says the cervix hasn't changed.
all these bad things are being said and my doc never mentioned surgery.
she just said lets do another follow up ultra sound in six months.
it's ridiculous.
she's blaming it on gastro related, which I've been cleared on that by my gastro doc, and she doesn't think it's related to gyno issues.
I suggested the hysterectomy or exploratory surgery.
no vaginal hysterectomy.
I asked her if she could look at the organs while she's inside and she said she will.
I've been evaluatated for possible emotional illness and I got clearance on that and even a letter was written from this psychiatrist that she thinks the medical doctors should do further testing and feels somthing medical is going on.
I'm frightened. this is why I want the hysterectomy. but I'm also worried of going right into menopause.
I would love to hear from other woman here who've had their hysterectomies and what to expect.
did any of you get financial assistance while out on medical leave?
will FEMA protect my job for me to insure I have it to come back to?
I really hope this message posts this time.

sincerely,
Linda

Lil'Pea · 10-08-2005, 12:59 PM

HI Linda...

Well, I just had my hysterectomy on September 13th and, like you, I was absolutely terrified! I have a couple of posts on this board regarding my concerns too. I had mine because of painful periods, and ovarian cysts that would rupture randomly with ovulation. I had everything taken out-uterus, tubes, ovaries, and cervix. Then they discovered in pathology that I have adenomyosis too. I am only 30 years old and was absolutely terrified of what would happen to me if i started taking hormones and such. I wouldn't describe myself as vain, but i have always been a very petite girl and didn't want to have any sudden weight gain and body changes. With research, i found that there is less chance of that happening if you go the natural route. It's called human identical hormone replacement, or bio identical hormone replacement (BHRT). I did quite a bit of reading on this and saw a hormone specialist as well. It is important that you get a hormone 'workup' before your surgery so that they try to get you in the same place with the HRT. Call your doc and ask if they do saliva testing for hormone levels as it is the only way to get a 100% accurate reading. Blood tests aren't accurate. If your doc doesnt do it, call around. You can still see a different doc/nurse for it without having to change doctors. Ask your doctor if he prescribes natural hormones, etc. The easiest, quickest way to find one in your area (at least it worked for me) was to call a couple local pharmacies and ask if they have a list of doctors or nurse practioners that can prescribe bio identical hormones. They should have that info for you. Hope that helps. Or go to your local library and ask if they have a book titled "from hormone hell to hormone well"...it was very very helpful and it will describe what I'm talking about very clearly.

SO, so far since my recovery, I feel pretty great. Pain wise, I didn't use pain meds after the first few days home. I am still tired alot and such, but can get around without discomfort (although stretching is still uncomfortable). I have noticed very little hormone fluctuations, and only minor hot flashes so far. But only a couple of them. I am on Estradiol patch 1 mg which i change every week. The biggest problem i am having is that the stupid thing won't stay on my skin!

The doc can't figure out why, so if I can't get it to work I'll go to trying the drops or pill form. But honestly, other than that, I feel normal-better than normal.

I was so absolutely terrified of having my ovaries removed at such a young age. I was afraid of all the possible things i might feel afterwards. It turns out that my fears were FAR worse than the reality as a couple women on these boards told me would happen! LOL...I was still scared though!

I don't know about the FEMA thing. It seems that your job should be protected. And some women don't need 6-8 weeks for recovery. You may be able to work before then, but just can't lift and so on. Every woman is different so you will have to listen to your body, and your doctor, to determine what is right for you.

I hope this has helped you at least a little. Please ask me any questions you would like. I know how scared you are. It hasn't even been a month since i was in the same posistion!! I feel for ya!

Lil'Pea

ksay9555 · 10-08-2005, 03:49 PM

Hi, I am scheduled for a hysterectomy on 10/17, the day before you. I have been fighting it off for 5 years, mine is related to massive fibriods, they are making my uterus about the size of a 4 to 5 month pregnancy. I have saved up between sick and vacation days, exactly 6 weeks. I had to file for Short term disability and FEMLA. The doctor signed the papers for 8 weeks, until 12/12, but since I work and live in the same city, I am going to beg him, please please, let me go back before. Money for me is also a big issue. I try to go on the boards evey day, I hope this has helped you!

maw maw · 10-08-2005, 06:57 PM

Hi. I had my hysterectomy when i was 35. I am now 42. I had trouble with the hrt. I do not take them. I have noticed that my hair is brittle. They say you gain weight after this but i did not. I weighed 135 when i had mine. I now weigh 120. The chest is not as full as it was. And i know this has to do with me not taking the hrt. And everyone handles it differently. One night i got really upset and cried because my step daughter said the mash potatoes needed more salt. As far as short term disability check with your hr department. Your job is PROTECTED UNDER FMLA if your doctor fills out the paperwork by federal law. If you have hot flashes the doctor can give you something for them. And to be honest the sex drive was a problem for me. And this was only because of dryness. I talked with the doctor and he said get something like ky jelly or astro guide. And please don't rush back to work. I was out for 8 weeks. and you will need them if not to get you mentaly back into shape. At first i was tired all the time. I know that i need to go back on hrt and guess i need to make an appt with my doctor for it. Hope this helps
maw maw

NY 1009 · 10-09-2005, 06:06 AM

thank you with all my heart Lil'pea, Ksay9555 and Mawmaw,
I can't tell you how relieved I feel to actually speak with someone who's gone thru what I'm imaginging to be the worst.
and yes lil'pea, I"m hoping that all my worrying will be worst than the actual outcome.
ya see, If I had a reason like cancer to give me reason for this surgery, I wouldn't be worrying about it at all. I'd have no choice other than to remove everything.
but because it's sort of by my choice, I feel that I might make a mistake and then it's too late to turn back.
I pushed it out of my mind when my dr approached me on it last yr.
I didnt do any research and made up my mind I am keeping my precious hormones. because i"m still not in menopause.
i don't get hot flashes, just really bad night sweats at times. I get extemely moody which I've always been but it seems to be getting worst as I get older.
so I think to myself, why am I getting this surgery?
can I wait and suffer the monthly pain till menopause?
yes I can. because it's not unbearable.
why I'm really doing it is because I don't need my uterus anymore because I have had my four children and I don't need it anymore. I suffer with cramps all thru the month as if I'm going to get my period but don't. I heard adenomyosis can do that.
what I do worry about is that the cysts are not going away.
can a woman have a cyst for an entire yr and it just be functional?
have you ever heard of a functional cyst staying on the ovary for an entire yr?
I thought functional cysts dissipate after a few cycles?
I have read stories of woman having ovarian cancer when the ultra sound just showed normal cysts. and that the dr was suprised upon surgery and pathology.
so it proves that ultra sound is not 100% effective upon reading.
only surgery and pathology can tell.
that's why I want the surgery.
but she's suggesting we take out everything.
she said she can understand my fears escalating or having to worry everytime a cyst appears and it has to be tested by ultra sound.
who wants to go thru that every few months?
she wanted me to go for genetic counseling and testing but I didn't do it.

Lil'pea,
I've never even heard of hormonal testing. I had no idea I was to do this.
what type of doctor is that? an endocronolgist?
why didn't my gyno suggest this to me?
I want the perfect level of hrt.
I am also glad you told me that you didn't gain weight, and so did one of the other ladies. as a matter of fact she lost weight. by not taking the hrt.
hrt makes you gain alot of weight?
I need the weight back on anyway. but my concern is because I lost so much and if I gain it back quick, that's not good either.
plus I'll gain from quitting smoking too.
please say a prayer my way that I get thru this quitting cigarettes upon recovery at home.
I've been making excuse after excuse not to quit so now i have the perfect opportunity to quit.
also about the patch.
when I used the patches for quitting smoking in the past, I too found them to not stay on my skin. which was a waste of money to me.
I found that the clear patches didn't stick as well as the flesh colored ones like bandades are.
plus we can't put on any lotion or oily substance while bathing because it will prevent the patch from sticking.
maybe you just have natuarlly oily skin? not a bad thing. that's good. it makes you glow rather than be all dried out.
I'm so dry that if I wear black slacks and from taking my pants down because I urinate frequently due to drinking alot of water at work, that I have dead skin flakes on them. that's gross.
my skin has become so dry. I NEVER had this problem before I lost all this weight.
it's right on my hips and where my hip bones are located. it's strange.
and my arms. but not my face.
maybe the hrt will replace the oils back in my skin.
I thank all three of you for helping me thru this difficult time.
I do remember reading your posts lil'pea before your surgery and as it was approaching.
I do remember the burning sensation of the incision too from having a lapartomy before when I had my tubes tied and my left ovary and tube removed.
I far prefer that pain than the pain of the gas they inflate your abdomen with when they do a laparoscopy.
it's horrible. for over a week I suffered with shoulder pain as if having a heart attack.
the darn gas wouldn't dissipate. even if I walked around like told to.
it got worst every time I had one.
so I said no more laparscopies for this gal. I insisted on the laparotomy.

does your belly stay swollen for long?
how long do you have to wait to have intercourse?
one good thing is no more periods!!!! yeah. that's great.
but I heard that woman still cycle. you still get moody like before.

do you think 3 days in the hospital is enough time to stay there? I think that's rushing it. I mean with all the pain and all. and I can't have a bowel movement right away after having abdominal surgery. I remember that.
I also had a hard time being catherized. I have some type of a reaction to the latex or plastic that it's made of.
It makes me burn and feel like I have a bladder infection.
I remember when they took it out while i was awake in the recovery room and I begged them to do it while I was still asleep so they could medicate me for the pain before I woke up.
I suffered alot of urinary tract infections all thru out my life. they're horrible.
the gyno from last laparoscopy in 2003 said she had such a difficult time cahterzing me and that my bladder looked boggy looking.
she referred me to a urologist and he was going to scope me but I refused and never went back. I heard that having children can do that to the bladder. especially with mulitple births.
I'm talking way too much and I aplogize for that ladies.
I appreciate each and every one of you for your replies.
it's appreciated.
I feel alot better than yesterday now that I've read your replies.

I wanted to know why maw maw refused hrt? but you're thinking of it now.
how come you didn't want it? because of the risk of breast cancer?
does most insurance companies cover hrt?
I sure hope so.
they don't birth control pills.
I also wanted to ask you ladies if you have had a hard time sleeping since your hysterectomies? I usually wake up multiple times through out the night to begin with and I'm an early riser. my wake up time is usually 4-4:30 a.m.
and I go to bed early. right after dinner to be exact.
sounds like I don't really have a life do I?
but my kids are grown. I don't have to be by them everysecond.
thanks again, and thanks lil'pea for offering any other answers to other questions I may have.

what kind of dr do I go to again for hormone testing? the saliva testing?

Linda