I am a Doctor's worst nightmare. Not only am I a "Pelvic Pain Patient", but I am the beloved wife of an attorney. When I can't get a Doc to listen, I take my lawyer along with me. I have gotten great referrals to Docs that aren't afraid to treat me. And I have been refused treatment, also.
I wish that I had been able to keep my uterus longer. The recovery from the hysterectomy was hideous. Incision 8.5 inches - hip to hip. A friend recently had to undergo hysto because of the severity of fibroids and found a surgeon who kept her cervix intact. You don't know how much you like having one until it isn't there anymore. The scar from hysto where the cervix is cut out is at the top of the vagina. Not a good place for scar tissue, if you ask me. I can tell you from experience that having scar tissue instead of a cervix does not enhance sexual pleasure. My cervix was removed because, "That's what we do when a hysterectomy is done. There is no reason for you to have a cervix, so we simply remove it." I fell for it. I had to put up a fight to keep my ovaries, but was able to until they became too diseased and had to be removed.
If cysts were found and "burned out", then you have endo. If your periods are normal and you are not suffering from exceptionally painful, heavy periods and your uterus is healthy there is no reason to have it removed. It is not related to endo or pain. If your ovaries and tubes are healthy - ditto.
Just my opinion.
I understand the bloating. My pants size runs from a 10 to a 16, depending on day. I call those bloated days my "puffer fish" days.
Having you colon attached to your abdominal wall hurts like hell all the time except when it hurts enough to make you faint or vomit......I know. A good lap surgeon can take a look around and release the colon and check for adhesion around the GB removal sites while he/she is in there. Jennifer recommended having herniation checked for also as she had several found and repaired and is doing very well. My Doc agrees that at least on area of pain for me is a trocar hernia.
There are lots of well informed, highly skilled lap surgeons in this country that are conservative in their approach to Adhesive Disease.
Keep us posted. We will all support whatever decision you make.
Donna
-----Original Message----- From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of Katie Sent: Friday, February 06, 2009 3:08 PM To: Multiple recipients of list ADHESIONS Subject: Re: Surgery--Would you do it again? (POLL)
Donna, same as you. The GYN believes that I suffer from Endo although this has never been "proven". I had a lap for a cyst a few years back and the GYN (different one at the time), found only 3 spots of Endo and he "burned them out", he said. I was 37 at the time.
I want to keep my uterus, not because of having more children, but because I have never heard good stories about hysterectomies, be they partial or full. I always suspected that I would have more problems if they took it out than if they left it alone. It has become somewhat "fixed" and most days I look 3 or 4 months pregnant but I only have pain in that area when I am bloated.
My biggest complaint all along has been the pain where my GI doc says that my colon is attached to the abdominal wall. VERY, VERY painful! He knows that I have strictures in several areas and said that I probably have them in my small bowel, too. I think these adhesions are related to my GB removal 13 years ago but of course I won't know until they get in there and take a look.
I spoke with a woman yesterday that has had 14 surgeries and is a total wreck now and wishes she had never had surgery for adhesions at all. That's hard to hear but then I read what you wrote about them going in and being very "conservative" and it gave me hope that maybe I can DEMAND my surgeon to do the same???
Katie
At Fri, 6 Feb 2009, Donna C Boggs wrote:
>
>The only problems I have, currently, are from the one blasted adhesions
that
>attaches my colon to my abdominal wall. All the other adhesions have yet
to
>cause any problems that I can't live with. Sure, my bladder gets pulled
out
>of place and emptying it can take awhile 9I keep books in the bathroom) but
>there is no pain. Having been through too many surgeries where, during
>laparotomy, gloved hands were run the length of my intestines for check for
>problems and laparoscopy masses of adhesions were cut through to get to the
>colon adhesion, my current surgeon decided to try a different entry point
>and avoid the quagmire of adhesions that are not causing my pain. He
>reviewed the video of the previous surgery in order to get his bearings and
>chose to place the trocars at my waistline and was easily able to maneuver
>down to the lower right quadrant. I always ask (demand) that the surgery
be
>video-taped and a copy given to me with the surgical notes. I take the
>video to a place in town that will convert it to a DVD and I keep it in my
>medical file. We all have our own, unique, map of our abdominal universe
>and I believe that our surgeons need to review that map so that they can
>best assess where and how to get in, what to cut and why.
>
>I, unfortunately, had my uterus taken when I was only 34. I am 53 now. It
>was thought, at that time, that without a uterus that endometriosis would
>stop cycling. Since then it has been proven that endometriosis has its own
>hormonal cycle separate and apart from a woman's reproductive cycle and
will
>continue to behave as endometrial cells do (swelling, sloughing off) even
if
>the organ that is supposed to hold all endometrial cells has been removed.
>
>Removing a woman's uterus to reduce endometriosis or adhesions is, in my
>opinion, like having your leg amputated to "cure" toenail fungus.
>
>No need to cut your nose off to spite your face. Seriously.
>
>It has taken me years of research and experience to feel like I have an
>understanding of this disease of adhesions. I know what to ask for and can
>explain why I am asking.
>
>All I know is this, my surgeon and I both believe that doing as little as
>possible during a lap will help preserve my over-all health and reduce the
>adhesion response by reducing the amount of trauma inflicted on the
>peritoneum. He and I are both very careful in making sure that my symptoms
>are not being caused by any other health problem and I am vigilant about my
>health. I get regular physicals, comprehensive blood work 2x a year
>minimum. I always hurt in one spot. When the adhesions are cut in that
>spot and my bowel is released, the pain stops. I feel better and am in
less
>pain when I wake up from general anesthetic that I do right before they put
>me under. The "healing pain" is easier to deal with that the pain leading
>up to me need for surgery. As the adhesions re-grow I have twinges of pain
>- 3rd day, 3rd week, 3rd month (my own personal waltz) but they pale in
>comparison to the debilitating pain that I have been in for months at a
time
>prior to any of the surgeries that I have had.
>
>What is the reason you are being given for a hysterectomy?
>
>Donna
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