Re: endo and IC/laparoscopy--Kristy

[Guest guest]

<<Diarrhea can be a symptom of endometriosis on the bowel area ascan constipation (this is part of why my endometriosis acts up).This last time around my vulvodynia acted up a lot because ofthe endometriosis flaring up. When my endometriosis recurs(returns) to create a flare I always get a bunch of new symptomsin addition to old symptoms I've had in the past.>> Kristy, What new symptoms? Have you had to have several laps? Also, with a normal lap, will they look at all those areas: bowels, pelvic floor, etc.? Or should I tell them to do that? (My pain is often toward the sides, like where my ovaries are and even further out toward my hips.)<<Please eat lightly for the first several weeks afterward becauseall that area around the stomach area will be quite sensitive.>> Thanks!<<areas where the

doctors have no experience in trying to remove endo from such as behind the uterus.>. Why can't they remove it there? Is it an uncommon site?<<Glad that you are going to have the surgery done hon. I hopeyou get some answers. >> Me, too. At this point, I can't wait for Tuesday! I hurt so badly all day long, especially in the evenings. I just hope they find SOMEthing. I hope it's not endo, but rather something easy, like scar tissue. What will happen if it IS endo, but I don't go on the pill?Becky

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Becky,

I'm going to answer your questions in reverse order. As for

treatments for follow-up after surgery some doctors may suggest

Lupron another type of hormone medication but is not the pill.

Some women just wait and see how the surgery does for them, and

yet others use alternative treatments such as Traditional

Chinese Medicine and dietary changes because some find that

certain foods (mostly those that are not organic in nature) can

make their endo worse because of the hormones used in the

process of growing the food.

Endo can cause scar tissue even if the endo is not visible.

What happens in a case like this is that the scar tissue sits on

top like a spider web and the endometrial implants sit

underneath so for a doctor who is not experienced in all aspects

of endo treatment with surgery may remove just the scar tissue

but not remove the endo. How the woman knows this is when she

has the surgery in the hopes of getting relief but still has the

same symptoms that took her in to surgery (this is also how one

can know when there has been endometriosis missed).

If it is just scar tissue alone they are not necessarily easy to

deal with. Some people have a chronic problem with adhesions

and sometimes with no known cause such as a disease like

endometriosis or colitis (as another example). Scar tissue is

caused by inflammation of some sort in many people but not

always. What makes this even more strange is that when I had my

first laparoscopy in 1997 (first of 4 over the past 10 years,

the first to find out what was wrong with me and the last 3 to

check the status of my endo because of the way my body deals

with the endo) and they found adhesions (a technical name for

scar tissue) I had never had any kind of abdominal surgery in my

life. They removed the adhesions with blunt dissection (a

special kind of way to cut out scar tissue) but even with that

removal I am now such that I have a history of dealing with

adhesions. And whenever they recur too I will start to notice

symptoms, namely a kind of pain that causes a pulling sensation.

Because of the work that it can take to remove endo that is

found there are some doctors that when they got their training

were not taught to look behind the uterus. I went to a doctor

for my surgery in 1997 that was supposed to be fairly

knowledgeable about endo but when he and the doctor I had at the

time did the surgery there was no mention of endo in the report

or where and I didn't find out about the endo til after the

surgery. How I knew what that first op report said is because I

got copies of it when I had copies of the medical record from

the second gyn I had after the first one that set up the surgery

moved away. When I saw the notes I saw where endo was found and

the fact that I had the kind that can recur (and does happen to

20% of women with endo).

Treating endo surgically is a very complex process unless the

doctor is very experienced. One of the more difficult areas to

get to to try and remove endo is behind the uterus. In that

area is a kind of cul-de-sac called the rectouterine pouch or

Pouch of . This area is one that is notorious for having

endo grow, same with the bowel but when the endo grows in that

pouch it can cause symptoms with the bowel such as the diarrhea

like you are having or the constipation that comes in to play

for me.

When endo grows on the bowel if the doctor is not experienced

they will not touch it for fear of doing more damage but if the

endo is left there (if it's there) it can cause a lot of pain

and diarrhea or constipation for example. Sometimes there can

also be nausea and stomach upset because of what the endo is

doing to the bowel. If left untreated it can actually eat thru

the layers of the bowel wall. It doesn't happen often. But

when it does it can create some problems. I heard of a couple

cases of two women who had endo on their bowel but when they

told the doctors about their symptoms the doctors thought it was

end stage colon cancer and it wasn't. When they had surgery and

had the problem dealt with it turned out to be the endo causing

the problems.

When endo grows on the bladder it can cause symptoms that make

it seem like IC. And sometimes vice versa. The reason I say

vice versa is because endo and IC are evil twins. They call

them twins in this case because the symptoms can be so similar

and be deceptive as to which one is causing the problem.

Bladder endo can also cause a great deal of pain. About 80% of

women with endo are prone to the possibility of having IC as

well and it's eventually something I'm going to need to get

checked.

As for the pelvic floor not all doctors will check this area so

I would recommend asking your doctor about doing this. I had to

with mine when I had surgery again last year. Last year I also

forgot to have my doctor put on the standing orders that I

needed to have Lidocaine ointment while in the Recovery Room.

How I knew that is because my vulva was on fire afterward but

the pain medication they gave me in the Recovery Room knocked

that out. But I made sure to know that from now on that I need

to let my doctor know that for surgeries in the future it must

be a standing order for me.

With my endo, especially when I started out I had a lot of pain

around my ovaries and the pain felt like I was ovulating all the

time but wasn't. The pain was also pretty sharp where it felt

like someone was poking my ovaries. The left side has always

been a big issue for me with my endo.

When endo grows on the pelvic floor like it did for a friend of

mine it can cause the muscles to spasm and when the doctor at

Mayo Clinic tried to tell me that my pelvic floor muscles were

spasming (they weren't at the time but I did feel them spasm

just recently because of the way my body deals with pain because

of another medical condition I have, felt them at the time I

went to get some labwork done but as soon as I made myself relax

the muscles stopped spasming) she mentioned to me that the endo

could be causing the spasm (that as I said she thought I had at

the time but I knew I didn't) because of the pain that it can

cause. So I told her, " Well, if that's the case then the only

way to fix the problem is to remove the endometriosis from that

area because all the PT is going to do if I were going to do it

(and told her I wouldn't and explained why and she respected my

decision) is that it's going to mask the true problem: the endo.

Now, was this spasming I felt the other day a possible new

symptom of my endo acting up again that's possible but I'll see

over the next few weeks. With my other recurrences I've had

pain in my uterus tell me my endo was acting up, I've also had

bleeding heavily occur causing my cervix to be irritated. I've

had nausea also occur as a symptom that my endo has recurred and

then this time around that led to the surgery last year I had my

vulvar pain get worse as well as having my body give me messages

saying that I have an infection going on when I don't.

I'm keeping an eye on the pubic mound pain I've had for the past

yeare as well to see if this thing is something may also be an

indicator of my endo starting to act up even though I still

think that this thing was triggered by the injections I was

getting from Pain Management when she went on to the mound

itself but is going to be hard to prove.

Some women who have endo may have surgery only one time and not

have endo bother them again such as those that go to top

specialists in other parts of the country as one example.

Others, because of the way their body deals with the endo may

have the endo come back 5 to 10 years after their first surgery,

and for others like myself they may have to have multiple

surgeries every so many years to check the status when it acts

up. When I had my surgery last year my doctor found that I had

problems with adhesions for the first time in several years. I

was 7 years free of adhesions after she had found 1 adhesion

that had occurred in 1999 that apparently was starting to form

some time after my very first surgery in 1997 even in spite of

the work that was done to remove adhesions at that time.

Because some women like myself have more problems with endo

acting up some of us need medications along with surgery. I go

between the pill and a medication similar to Lupron called

Zoladex. I chose the Zoladex over the Lupron for reasons that

relate to part of my complicated medical history.

If it turns out your doctor does find endo and they recommend

Lupron just remember that if you hear about dangerous side

effects from other women such as on endo lists if you choose to

join any, that each woman is different and that some women don't

have problems with the Lupron at all and have gotten help at

keeping the endo further at bay.

I have the name of a wonderful book about endometriosis if you

would like to check it out. If you do let me know and I'll send

that in another e-mail.

If you have other questions for me please don't hesitate to ask

and you can discuss this with me off list if you prefer.

If you need more info about laps let me know as well. I've had

4 over the last 10 years (that's how long I've been diagnosed,

the breakdown of those 4 laps is further above).

Based on your symptoms, it sounds like you might have

endometriosis, especially with some of the problems you have had

with your period.

Kristy

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