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Has anyone else... Has anyone else...

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  #1  
Unread 06-15-2005, 01:09 PM
Has anyone else...

Hi.
I am over a year past my TAH, endured
to rid(?) me of endometriosis.
I have been back (last December) for
yet another laparotomy - to remove
scar tissue that was blanketing my
bowel and bladder. The GYN placed a sheet of some film over my organs in the
hopes that there would be no further
reattachment.
After another 6 months, I am feeling
some familiar pain again and dread going
to the Dr. and recieving the 'nothing can be wrong, you have no uterus' treatment.

Has anyone else had experience with excessive scarring after a TAH?
After Endo excision?

Anyone else in Washington (Seattle).?
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  #2  
Unread 06-15-2005, 02:59 PM
Has anyone else...

I've had problems over the years with adhesions. I hope you aren't facing this problem again. Are you in pain?
  #3  
Unread 06-15-2005, 03:29 PM
Has anyone else...

Oh yes.
It's a long story... ready?
I was diagnosed 7/03. (Endo)
During the lap GYN was able to
remove endo & scar tissue that
was apparent.
6 months of Lupron injections in
an attempt to ease pain & inhibit
progression until I had more time
available for surgery recovery period
here at work.
TAH, 3/04 Uterus, bladder covered
w/ endo despite the Lupron.
Month or 2 of pain I assumed
was associated with the laparotomy
healing.
Also started having upper abdominal
pain, began to see a GI Doc for it.
(later determined? to be too much stomache acid.treating with nulev
and prilosec currently,it's also getting
worse.)

By 12/04 my GYN finally decided to
'take a look'. Discovered scar tissue blanketing my bowel & bladder,
I was in for another laparotomy the following week.
They covered my bowel/bladder
with some sort of non stick film.
Now I am experiencing upper &
lower abdominal pain once again.

Starting to wonder how much of
the upper abdominal pain is possibly scar tissue also.

Although I work for a major health
care organization in Seattle,
my manager is not one to go easy
on those with freq. med. appts -
I've had major surgery twice in a
little over a year.
And I aleady feel like I have a target
hanging over my cubicle as a result.
I need to build up sick & vaca. again...

Anyway -
I am hoping to find a gyn in Seattle;
#1 who is not as focused on the
obstetrics side of the job and will
listen.
#2 who doesn't work for the same
healthcare organization that I do.

And I am just curious if it's common
to have so much scarring after a Hyst.
or if it is more an Endo issue.
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  #4  
Unread 06-15-2005, 05:13 PM
scarring

I too had the film placed over my organs during my first adhesion surgery. What they didn't tell me was that it is only 70% effective in preventing additional scarring. I had the symptoms, bloating, pain etc return and had to have a repeat one. It was at that time I had to have tah and bso because of the scarring. These were much worse and everything was stuck to everything. Trust your instincts...if the old pain has returned, it is very likely you have more scarring. The last time they dissolved the film and squirted it all over my abdomen. It seems that repeat scarring is very common.

Hugs out to you.

It amazes me the stuff we don't know and what they don't tell us.

Deborah
  #5  
Unread 06-15-2005, 09:01 PM
Has anyone else...

Hi,

Both endo and surgeries cause scarring. I had severe endo and it caused a lot of adhesions.

My last surgery was by an oncologist-gyn. I chose to do this because they are generally very skilled and are used to working with abnormal looking bellies.

He was wonderful to me. He told me there was a 15% chance of reoccurance of adhesions. Keeping my fingers crossed.
  #6  
Unread 06-16-2005, 07:30 AM
Has anyone else...

I've had 5 surgeries to remove adhesions - and they keep coming back. Chances are - if you think you have them again - you do. You know your body better than anyone...and if it is telling you something, listen to it. That's how we get ourselves into trouble - when we ignore all the signs that it has given us!

I know what you mean about working in a hospital - I also work in one. You would think they would be much more open to people with complications!

Take care, and good luck finding a good doctor! That is soo important! I have a lot of family in Seattle, but nobody that has had problems, so I wouldn't know if their docs are good for this or not.

Please let us know how you are doing!

s

Cortney
  #7  
Unread 06-16-2005, 09:54 AM
Has anyone else...

(((WebWench)))

I see no indication that you had a BSO in your comments. If you still have ovaries (or 1 ovary or a remnant of an ovary), endo can come back and often does. Also it is possible for remaining endo implants to make their own estrogen supply.

In my case, my ovaries went haywire since the TAH. As the endo specialist said to me that he sees my symptom pattern a lot. That women who did not have ovary problems but had endo and had a TAH and not a BSO will have ovarian malfunction. He said in addtion to pain, hormonal fluctuations are at times severe. He said no two days for me were the same.

I can say that since I have started the Synarel (similar to Lupron, but rather than a shot, its a nasal spray) I find the symptoms from menopause easier to handle than the ovarian malfunction. So, I am probably going for a BSO in the fall. I think shutting them down slowly (twice a day nasal spray) was kinder and gentler than a shot (that lasts for 1 or 3 months) or sudden surgical menopause. Time will tell.

Consider skipping the generalist gyn search and going straight to an endometriosis specialist for further evaluation. The Endometriosis Association can help you in that search.

Good luck to you and do keep us posted. We all learn from each other.

  #8  
Unread 06-16-2005, 02:27 PM
Has anyone else...

Yes I had BSO also.
I am on estratest & vivelle.
On Lupron, had a taste of what chemically
induced menopause can be like.
In order to stay off the mood enhancers
- I am on hrt. In a perfect world, I would have the time to address the HRT issues
naturally, but in the meantime?

If I had the sick time/vaca / money - I
would get Dr.Redwine to review my case.
But - I have not been able to build up more than a day or two of vaca and I think I have a whopping 7 hours of sick time. Dr.Redwine is at least a 9 hour drive from Seattle.

I am going to ask my family Dr. if there is anyway that he could refer me to a
more specialized GYN instead of the
regular GYNs available in his healthcare network.

THANK YOU LADIES.
How wonderful it is to be reminded that I am not alone and I am not crazy.
  #9  
Unread 06-16-2005, 03:05 PM
Has anyone else...

I kept reading TAH and not TAH/BSO, so I naturally thought you had ovaries. As Rosanne Rosanna Danna would say ... "Nevermind!"

As you know, Estratest and Vivelle both contain estrogen which could be feeding any endo implants. As we have experienced, endo is a very persistent and efficient disease. My gyn will likely put me on both estrogen and progestin or progesterone at the time of my BSO due to my history of endo. He says the progestin or progesterone will help to block the endo but will allow me to replace estrogen (called opposed estrogen therapy). You might ask about that option with your doctors.

Do you have adequate pain relief in the meantime? Could your family doctor help you to control your pain while you wait to have a specialist evaluate your case?

Will you get fired if you take time off without pay? If your employer has greater than 50 employees in a 30 mile radius (I think this is the rule) then you have rights under FMLA for unpaid medical leave. IMHO, well-being comes before financial considerations.

Take care and keep us posted. We do care!!!

  #10  
Unread 06-16-2005, 04:34 PM
Has anyone else...

Estratest is Methyltestosterone w/ Estrogen.
Vivelle is a transdermal estrodial.
This is a fine combination most of the time.

I'm very familiar with our FMLA policy.
Having opened 2 intermittent and 2 continuous
basis FMLAs within the past 18 months I may JUST eek by
(we only allow so many within a rolling calendar year.)
And my mgr REALLY seems to not like sick
people working for her.
IF I get it filed in time, it will be a good
source of protection.
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