ENDO Messages for September, 2008: Re: lap vs hysterectomy

Re: lap vs hysterectomy

From: bren (anonymous@obgyn.net)
Tue Sep 23 15:44:40 2008

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In reply to: Karen: "Re: lap vs hysterectomy"

I'm sorry that you are in so much pain all the time...I totally empathize w/ you because I have been sufferring from one of the most debilitating pains for the past 6 months on a daily basis. I always had long & heavy & painful periods, but doctors got me to believe it was normal until it started getting worse, I kept getting misdiagnosed w/ a UTI each cycle & I also started having horrible pain down my legs,which I eventually found out it was nerve pain. I found out that there's something calld sciatic endometriosis in which they are doing more research on it because it's not as common, but the nerve pain is unbearable. I was also misdiagnosed w/ restless leg syndrome. I finally figured it was related to my period because it only happened during each cycle until it started happening everyday & worsened with each cycle & one month it was the worst & I started bleeding black period blood (heavy w/ clots). Then it just got worse & worse & the only way I get through a day is by being medicated on a daily basis. The bleeding that you are having seems very dangerous especially if you are always bleeding that heavy on a daily basis. How has the patch been for you w/ the side effects? Sounds like it was working at first, but what dose are you on? Would it be possible to up the dose to help control the bleeding? My co-worker had the same problem w/ constantly bleeding a lot & was put on lupron, which I heard has many negative side effects, but didn't give her any...She recently had a hysterectomy through lap & isn't coming back to work until November. If your doctor is going to "cut" out the cysts, I know that's much more effective than lasering them since there's a less chance of it growing back. Either way, if you go directly into deciding to have a hysterectomy, you're going to be out of commission for awhile, whereas the lap alone has a shorter recovery time. I would ask the doctor what other treatment options there are to help control your bleeding, you probably haven't found one or the right dose that works for you. The progesterone only hasn't given any negative side effects for me (birth controls gave me all sorts of neg. side effects) and can be given at higher doses that what I'm on, but at times can also cause breakthrough bleeding, but either way, I would find out from the doctor what else there is to stop your bleeding & do the lap first. If the lap doesn't fix your problem, you don't have to wait 10 years to decide to get the hysterectomy. Although a hysterectomy will obviously stop your periods, it doesn't always necessarily mean that all your pain will be relieved especially if you have other things going on or growing outside of your uterus.There's also a chance that you can get more or new problems after removing your uterus & ovaries & if it does, it's not like you can decide to put your uterus & ovaries back in. You should research about all the disadvantages (pros & cons) of having a total hysterectomy.If you haven't tried that many other treatment options & your bleeding isn't life threatening, I would do that first & get your lap done asap to see if it controls your bleeding.You should also get counseling about the disadvantages of a hysterectomy. I know that if a woman has her cervix removed, it can result in a shortened vagina causing painful intercourse & the cervix plays an important role on the bowel & urinary function. Also, ovaries has an important function for a woman in producing androgens, which affect your sense of well being, muscle strength, & libido. I'm not saying that these negative side effects will happen to you if you have a hysterectomy, but it's just a thought. What if you don't try the lap & other treatment options & go straight into having a hysterectomy & then it doesn't improve your symptoms & pain completely? Won't it leave you wondering "what if I tried the lap first? or what if I tried other treatment options w/ the pill?, etc" Lots of "what ifs" whereas if you & your doctor try all that you could & then decide to have a hysterectomy, you won't be left wondering "what if". Just a thought...especially since recovery from a hyterectomy is a lot longer than just having a laparascopy & your doctor seems experienced & said that he/she will be cutting out the growths on your ovaries & elsewhere if any, which like I said is known to be a lot more successful than burning. I would also see if you can get proper pain management while trying different treatment options so that you are able to live somewhat of a normal life w/o so much pain. Luckily, I have a PCP who truly believes my pain & altho' he tried to refer me to the pain management program, I was declined for reason being that there's a possible source to the cause of my pain & I had "upcoming surgery" on my record at the time of the referral...so he's been great at handling my case & discussing w/ the pain management doc. to help manage my pain. If it wasn't for my PCP providing proper pain management, then I would be on disability from work. All I know is that you need to get proper pain management & get the bleeding controlled so that it isn't life threatening or cause severe anemia while you try other treatment options. Sorry so long...but hope this helps on your decision...you can't base experience from your grandmother since everyone is different & it doesn't mean that if the lap or nothing else works, that you have to suffer for 10 years before a hysterectomy. Hysterectomy should be the final option choice after trying everything else so that you don't have any regrets. Hope you feel better soon! At Tue, 23 Sep 2008, Karen wrote: >
>Thank you for your response. My doctor put me on seasonique birth
>control which stops your period except every three months. That eased
>off the pain a little (instead of reaching pain level 10 6 times a day
>only 4, but constant pain levels of 3-6 didn't change). That pill was
>making me nauseated and sick so she changed me to the ortho evra patch
>which you take for three weeks and then have a period on the 4th week.
>Well, the day after I started my 2nd week, I started my period! Still on
>it a week and half later and still super heavy (toilet gets completely
>filled with blood when I go) and my pain levels sky rocketed from the
>moment I switched to the patch. One of my concerns with a lap is that
>the doctors have said that I have polycystic ovarian syndrom which is
>causing problems as well and I have some endometrioas cysts on my
>ovaries - so how exactly will a lap take care of my ovary problem? The
>doctor said they would cut off the cysts during the lap, but if the
>problem is with my ovaries (which are about 3 times larger than normal
>size) won't they just come back unless the ovaries are removed? As for
>my family, they have no current problems with this. In fact, until I
>told my grandmother about my problems just a couple of weeks ago, I
>never even new ANY of them had gone through this and I am very close to
>them (especially my grandmother - I grew up with her and currently live
>just down the street from her). My grandmother told me that she went
>through years of various types of treatments from the doctors and after
>10 years they finally did a hysterectomy which took care of the
>problems. I just don't want that to be me - going through 10 years of
>pain (which gets worse every day) and treatments before getting relief -
>it scares me. Plus thinking of how much it takes me away from my family
>and my son - who is almost 3 yrs- I just don't want it affecting him but
>it already is. When I have my really bad moments he comes over, gives
>me a hug and asks "mommy hurting?" and gets a sad look. That kills me!
>I should be on the floor playing with him, not curled up in a ball in
>the chair not able to move!
>
>Thank you for listening to me and for all of your adivce. I really do
>appreciate it. My husband is wonderful and tries to talk with me about
>it and tries to help, but it's nice to talk to someone who has gone
>through this and knows first hand what it is like. Thank you.
>
>At Mon, 22 Sep 2008, bren wrote:
>>
>>Forgot to mention-I should also mention just in case it wasn't brought
>>up to you by your doctor, that depo provera can be given by injections
>>or taken orally as in my case & instead of taking this progesterone pill
>>for 15 days, stop for 15 days, & start again 15 days, it can be taken
>>regularly to completely stop your period. There's also other forms of
>>birth control pills that stops your period every month & you only get
>>your period like every 3 months or something like that. Did you just
>>have your son? I heard of women who start their period a little after
>>they stop breastfeeding & initially their periods are prolonged & heavy,
>>like if it's never going to end. Like I said, your doc should offer
>>lots of treatment options & I agree w/ him that you should avoid a
>>hysterectomy. From your family history of hysterectomies, did they all
>>have complete relief & did they try any other treatment options besides
>>the lap before deciding to have a hysterectomy? Just a thought. Also
>>from extensive research & reading stories of many women who had a
>>hysterectomy, it just seems like majority of those who had a
>>hysterectomy before trying many other treatment options all regretted
>>having the surgery to remove their uterus either because of worse
>>symptoms after (such as hot flashes, menopause symptoms etc., having to
>>take another pill everyday that gave them neg. side effects, or because
>>their endo still grew back in other places & they still had pain). What
>>kind of pain & symptoms do you have now besides what you mentioned &
>>what treatments have you tried & what was it like for your
>>grandmother/family members after they had their hysterectomies?
>>
>>At Mon, 22 Sep 2008, Karen wrote:
>>>
>>>I am new to this site and I am looking for some advice/comfort from
>>>others going through the same thing. My doctors have unofficially
>>>diagnosed me with endometriosis and pcos. By unofficially I mean they
>>>look at blood work, symptoms, and various other test results and say
>>>that it what it is (basically short of a lap which I know is the only
>>>way to know 100% that it is endo). I am in severe pain, have
>>>unbelievably long (up to a month and half) and heavy periods and I just
>>>want to get out of the pain in one shot with a total hysterectomy and
>>>have them take everything. The only problem is that I am 26 and because
>>>of that the doctor doesn't want to do a total hyst but do a lap instead.
>>>I am happily married with one son and my husband and I agree that our
>>>family is complete (so much so that before this started with me he had
>>>gone to a pre-op for a vasectomy but had to put off the surgery because
>>>of this). My fear is that if they do a lap, I will still have problems
>>>and they will have to go in for a total hyst anyway and that means 2
>>>surgeries with 2 recoveries. Let me add that endo apparently runs in my
>>>family: grandmother, 2 of her 3 sisters, and their mother all went
>>>through numerous laps and all had to have total hysts in the end anyway;
>>>and my mother who, was able to avoid the painful side, had to go through
>>>numerous D&Cs to get pregnant. Should I just listen to the doctor and
>>>try the lap and then the hyst if needed or should I keep pushing to get
>>>him to do the total hyst that I want. Thank you in advance your
>>>responses.
>>
>>--
>>Bren
>>

--
Bren

Next message: Yukky: "Re: Dr. Nezhat"
Previous message: Karen: "anyone know dr. lipari of jax, fl"
In reply to: Karen: "Re: lap vs hysterectomy"

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