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2/20/2009

"Jeanne's Endo Blog": What Can I Expect From Having A Laparoscopy???

Today I received an email from my friend Alicia (aka Yaya) of:

Yaya Stuff

Here's what Alicia's email to me said:

One of my infertile blogger buddies just posted that she has a laparoscopy coming up:

Confessions from an Impulsive Addict

Thought we should keep her on our radar since this is her first one.

Alicia

After reading Alicia's note, I stopped over to the blog she had mentioned.

By the way, I should highlight the fact that this email from Alicia is a classic example of her going out of her way to help women with infertility and/or endo!!!

Anyway, I posted a lengthy comment on her blog and the thought occurred to me to turn it into a post because several people just this week (!) have come to my attention as being undiagnosed with endo and heading into laparoscopies. Each of these women was anxious!

So in my comment on her blog (see what I posted below)... I explained what I have experienced with laparoscopies. Also, I know MANY women who have had laps and wanted to reassure her that there are plenty of us ready and willing to help her with laparoscopy questions since we've had them (numerous laps for many endo patients).


Here is the comment I posted on the blog:

Confessions from an Impulsive Addict


Impulsive Addict,

Hi! I'm the Jeanne that Alicia (aka Yaya) mentioned above. She sent me an email about you after seeing your laparoscopy post. She wanted to "send you some support".

I have endometriosis and I have had 7 surgeries. Six of them were laparoscopies and 1 was a laparotomy ("major surgery") with a large incision. In that major surgery, I had 2 surgeons working as a team. One removed the endo. The other (a colorectal surgeon) removed a foot of my colon. While they were in there, they discovered a carcinoid tumor on my appendix. So out went the appendix.

I TOTALLY understand your fears and anxiety about having surgery.

Don't hesitate to email me with any questions you have about laparoscopy... because I have had 6 of them!

Here's my email address (written out to foil the robots/spammers): endendo [at] frontiernet [dot] net

Here's my surgery history:

1992: 1st laparoscopy, diagnosed w/endo. Unfortunately, this Dr ended up being a real jerk. I got the correct diagnosis… just no pain relief.

1993: 2nd lap with a more skilled doc who went in and got what the first GYN missed!!

1994: 3rd lap... more endo removed

1996: laparotomy with hemicolectomy/bowel resection due to malrotated colon/paraduodenal hernia that was causing partial intestinal blockage, endo removed again, carcinoid tumor/appendix removed

2003: 4th lap... endo removed again, interstitial cystitis diagnosed via cystoscopy the same day while under anesthesia. (IC and endo often co-exist in the same patient)

2004: 5th lap... believe it or not, the pelvic pain specialist I now see (highly skilled with endo) did not find any endo in this surgery! However, he diagnosed me during this surgery with pelvic congestion syndrome (by also doing a venography to confirm). He also removed a 3" cyst (non-endo type cyst) from my left ovary. This cyst was a "normal" type of cyst that any menstruating woman could have (as far as tissue type) but clearly it needed to be removed since it was 3"!

2008: 6th lap... this lap was for the purpose of cutting a nerve. Nerve cutting is a "last resort" type procedure. I had off the charts pain for several years leading up to this surgery and had gotten nerve blocks, etc. This was one of the 2 out of 7 surgeries where endo was not found. This surgery didn't go as planned. Let’s just say 2 nerves were cut (despite me consenting to one) and the results of the surgery were not good with the nerve cutting (long story). Nothing for you to worry about! Totally different kind of lap.

I’ve had 6 laps so I have lots of personal experience plus I know a slew of people who have had laps as well.

So, if you have questions about laparoscopy, I'm here to help!

Here are some of the "tips" I suggest to women having a laparoscopy:

1) Find out how experienced your surgeon is. Some docs know far more about endo than others. You don't want to have extra surgeries down the road because the first surgery didn't give you the most "bang for your buck". I do not want to increase your anxiety in any way but having a surgeon who really knows endo is really crucial when going into a lap for the reasons you mentioned.

2) Try to relax. It is totally understandable that you are anxious about having surgery --- but worrying about it isn't healthy for you. Whatever coping mechanisms you have to get through the next few weeks without fixating on the lap will help you. Some examples might be: relaxing music, candles (if you're not allergic like me), meditation, acupuncture (VERY HELPFUL!!!!), vegging out & watching TV, blogging, etc... Whatever will distract you from thinking about it will help. Getting all worked up about the lap will get stress hormones going in your body. Not helpful.

3) OK. The surgery. Yes, it's surgery. Yes, it's outpatient. Yes, it's easier than an inpatient (major) surgery... like the 1996 laparotomy that I had.

However, here is a heads up.

In my personal opinion, doctors minimize the recovery time most women need after a lap.

I started a local endo support group in 2001. (That group is where I met Alicia). I have heard many, many stories from women about their recovery time exceeding what doctors predict. DON’T be scared by this but DO give your body TIME and REST after the surgery to properly recover. It’s very important to get rest afterwards!

I've been in endo support groups (the local, in-person kind) since 1992. I have talked with MANY women who have had laps.

I started my blog last June and have heard many more women's stories.

Between the support groups and the blogging, I have heard hundreds of women's stories about their laps. I can try my best to answer any questions you might have.

Obviously I can't give medical advice but I can share my personal experience and the stories of hundreds of other women.

Anesthesia has improved immensely over the years. My last couple of laps were much, much better.

So you are most likely not going to have the type of anesthesia side effects that were common in the 1990s.

The doctor inflates the abdomen with carbon dioxide to allow for better visualization. The laparoscope is used differently by different docs (i.e. number of incisions).

The small naval incision is a given. The question is how many other incisions the doc chooses to make.

Additional incisions allow for instruments to be inserted in multiple locations. (Essentially the doctor can see what's going on much better with the extra instruments/incisions).

If the doc sees something that looks like endo, he/she takes it out. A biopsy is done of the tissue to verify that it's endometrial tissue. Don't be scared by the word biopsy. It's just what they use to tell if it is/isn't endometrial tissue.

Doctors can't always tell endo just by looking at it.

Anyway, assuming you have endo... the doc will remove it, then stitch up the very small incisions (don't worry, they are small), and they'll wheel you off to the recovery room.

You'll wake up... probably feeling pretty feeling foggy. (Everyone's different in how they react to anesthesia). The nurses in recovery will watch you and they have certain criteria to follow on when to switch you from recovery back to your outpatient "room". (It's one of those rooms with curtains for sides but it’s a room).

Once you get to your room, your loved one (hubby in my case, mother in the early years) will tell you what the Dr said about how your surgery went.

You won't talk with the Dr directly until your post-op appt. So it’s important for your loved one to really listen to what the doc says re: how the surgery went, what was found, etc. My husband's phone can do audio recordings. I had him record what the Dr said about my surgery (with the doctor's permission to record his comments). Or the loved one could jot some notes down re: what the doc said post-op.

That way, I didn't have to anxiously wait the 1-2 weeks after surgery to get to the post-op appt & find out what the heck happened. That wait would drive me bonkers!

The post op appts used to always be 1 week after but nowadays they seem to be more like 2. (I personally think 1 week was better).

Anyway, TAKE IT EASY after surgery. Lie down, definitely no lifting, rest, rest, and rest.

Docs tend to minimize when it comes to laps. Surgery is surgery. Yes, you'll be sore. But the pain meds will help and the more rest you get the better you'll feel.

If you try to get too active too soon, it's not good. I've made that mistake. Trust me. You'll want plenty of rest afterwards.

4) Recovery at home... Everyone is different but I would plan on having a very sedentary week after surgery. Some people find it helpful to have a loved one help out. For example, my mother-in-law stayed with us after one of my laps. She took care of my daughter, who was in pre-school at the time while I rested and my husband was at work.

It helps to plan ahead for whatever help you may need.

Don't let anyone pressure you to do too much too soon. Don't buy into any guilt trips. Your body will need time to recover.

Recovery is much better now post-lap than in years past. Docs are better at getting the carbon dioxide out. This is huge because back in the 1990s, I'd get these terrible chest and shoulder pains post-lap and it was the CO2. The good news is docs have improved greatly on getting the CO2 out!

REST, REST, REST

5) Results of lap... if they find that you do have endo, you'll have the proper diagnosis that will enable you to get whatever treatment is appropriate for you.

If it's not endo, the laparoscopy will enable them to look around for other issues.

So the good news is that it's highly likely that this lap will give you some answers or insight or relief... regardless of what it is that they find!

6) I know you're scared. I don't know anyone who doesn't have some fears going into a surgery. These feelings are normal. A first surgery is often scarier because of the whole "fear of the unknown" factor.

That is why I wrote some of the stuff above. While it may not all sound fun, I personally would rather go into something like a lap armed with info than head into "the unknown".

I can provide you lots more info offline if you like.

I have blogged extensively about endo and many women comment on my blog that have not yet had a lap to confirm their endo but strongly suspect they have it.

Feel free to look through my blog because you may find info there that's helpful to you heading into surgery.

I'm generally faster moderating comments than answering direct emails but you're welcome to contact me via either method. :)

I'm sorry to have babbled on so. I just wanted to try to make you feel better. Alicia's email to me had your link and mentioned you were heading into your 1st lap. So I just wanted to stop by and let you know that I'm available if you need an ear or if you have lap questions.

Having had 6 of them, I've learned a few things along the way. :)

I know it's scary and I know the wording on those forms can be freaky.

What may give you some peace of mind is to set up a health care proxy. Sounds complicated but it's not!

You can get the form at any hospital. Here's what I did. I listed my husband as my health care proxy. If I'm unable to advocate for myself or I'm incapacitated in some way, I authorize him to make medical decisions on my behalf.

For example, with my last surgery... I explicitly told my doctor in the pre-op appt "I do not want to have a hysterectomy unless there's cancer”. I went over my wishes in detail with my husband. I designated him as my health care proxy.

That way, I have the peace of mind that my wishes are being respected (say, protecting fertility) while I'm under anesthesia.

That made me feel better. I believe it's so important for patients to advocate for themselves and to delegate that duty to someone they trust if/when they are going to be unable to speak for themselves.

I'm sorry to get all serious on you. It's not all doom and gloom!

They might find endo, remove it, and help you somehow (pain relief? fertility?)

I know MANY women who have had laps that would be happy to talk with you about their experiences. If that would give you any comfort or peace of mind, let me know!

I'm a big believer that "fear of the unknown" is far worse than reality most of the time. Knowing what to expect may calm you down heading into this surgery.

I have posts about coping mechanisms, the healing power of music, relaxation etc. You may find something on my blog that will "calm your nerves" a bit about the lap.

Hang in there!!!! When I read your post and heard how worried you sound about surgery, I felt compelled to respond with this detailed comment because I want to help!

So, use these next few weeks to prepare. Take advantage of the notice to make arrangements for your recovery period, for example. Instead of dreading the wait for your lap, use this time to use or develop coping techniques, relaxation, stress reduction, etc.

I know you'll be relieved to get the surgery behind you. That's understandable. However, if you use this time to prepare, physically and mentally, things will go much more smoothly than you might think.

I hope this comment makes sense. I've had terrible insomnia and have been getting very little sleep lately. So I'm feeling dizzy and out of it right now from being so tired. So I apologize if this comment is talking in circles at all.

I'm exhausted and in pain and on my last little bit of energy right now.

I hope something in here is helpful!!

Again, don't hesitate to contact me if you have questions or just need to talk to someone who has had numerous laps before.

I'm sending positive energy your way and wishing you a smooth surgery and recovery.

Remember... after the surgery:

REST, REST, REST :)

Take care and try to relax... For me, acupuncture is at the top of my list when trying to calm down!

Have a wonderful night! :)

{{Hugs}}

I'm around if you need me!!!

Jeanne

February 20, 2009 5:54 PM


Hopefully this will be helpful info to anyone out there reading this who is wondering about laparoscopies or scheduled for a first laparoscopy.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

4 comments:

Yaya said...

I think this information is SO IMPORTANT for women to know. Look, you've already had google alerts regarding it and you just posted it, so it is definitely something that women need to know.

Jeanne said...

Alicia,

In all these months of blogging, I had talked here and there about my surgeries but never to this level of detail.

It's funny. As I was writing the comment to that blog you had mentioned yesterday, the comment just grew & grew. I tried editing it as I went along but just couldn't bear to leave any of it out because it was all so huge in my life.

As I was writing the comment, it got so long and so detailed that I started to get the idea to have it double as a post on my blog.

So that's what I did.

It blew my mind that I got a Google alert for my blog a few hours after I posted it.

It was just a strange week where I heard of multiple women in that same boat... suspecting endo or having a doctor who wants to check for it... but being nervous about having a laparoscopy.

Hopefully it'll help someone. Lord only knows how blindly I walked into my 1st laparoscopy. Dear God. I was as clueless as can be.

I had never heard the word endometriosis until the doctor's appointment where we set up the surgery. This was in 1992!

Well, as they say... experience is a good teacher! (Or something like that). :)

Jeanne

Fenz said...

thanks for posting this, i'm having my first lap in 2 days and it's good to have this info.

Fen

Jeanne said...

Fenz,

I'm glad you found this helpful.

GOOD LUCK with your lap!

Please stop back and see us when you're feeling up to it.

Rest, rest, rest after your lap. :)

Take care!

Jeanne

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