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New Sister in waiting.. New Sister in waiting..

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Unread 03-01-2002, 03:47 PM
New Sister in waiting..


Im new to this site. Have severe endo, with laproscopic hyster to be scheduled for late march...or April...dont know yet.

Had 2 Laps done, one in 93 and one in 96. Let it go too long and now I have terrible cramps in both legs ALL THE TIME. Its time to have the parts removed.

My doctor said he could remove all the endo without doing a hyster, but frankly, i am so tired of bleeding every month, that I can bear the thought of seeing one more large clot!!!!

When they do the lap hyster, I was told they remove the this bad? The last thing I need is bladder problems, and Im afraid that is what will happen post hyster.

P.S. my ca125 was 100. Four doctors all told me it could just be the endometriosis causing those numbers...worried ..have any of you gotten high numbers with your condition..and it NOT be cancer?

Also, wondering if anyone has stories about lapro/hyster..
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Unread 03-01-2002, 04:10 PM

This site will be a wonderful resource for you for both infomation gathering and support. The only issue I can personally share with you is that I had my cervix removed and I have no more bladder problems than I did pre op. I am 10 weeks post tah/bso and I feel wonderful. Life without cramping and flooding issues is fantastic Stop in chat and talk awhile as the ladies there are a great source of info as well as support.
Unread 03-01-2002, 04:19 PM
New Sister in waiting..

Welcome Debz. You have come to the right place. I know that this web site has helped me tremendously I also have endometriosis, and my surgery is also planned for end of March or April. I should know my date this coming week.

I can't answer your questions, but the hystersisters are so wonderful and helpful here and you will learn so much. I can tell you that I do have a good friend who had a TAH/BSO, and this was years ago, and she has never had any bladder problems even with her cervix gone. I know this gives me hope Best wishes and prayers for a healthy future ahead for you.
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Unread 03-01-2002, 05:59 PM
New Sister in waiting..

Hi Debz!

Welcome to Hystersisters!

Many, if not most, hysterectomies do involve cervix removal; I had mine removed, and the surgeon does what is called a 'vaginal cuff' to replace the structural function of the cervix.

I had the CA125 test and ended up doing alot of research about it. I found that it is not used to diagnose cancer, as it often will give false positives as well as false negatives when other factors are present, endo being one of those factors. I was concerned about my CA125 result, too, but I am cancer-free!

Keep a positive attitude, sweetie - we're here for you any time!

Unread 03-01-2002, 07:35 PM
New Sister in waiting..

I had my hyster in September 2001. It was a lap where I had my cervix and uterus removed, left the ovaries. I had no post-op problems with my bladder and was back to work in three weeks. I did have the beginning stages of cancer in my cervix, found on a routine pap. I feel great, no more periods! and no cancer worries. It's the best decision I ever made. Any questions E-mail me back at Melissa
Unread 03-01-2002, 08:11 PM
Hi Debz & Ladies In Waiting

I am glad you all found this site. It really helped me keep my sanity in a scary time of my life.

Debz, CA125 was an accurate marker for me, for ovarian cancer. However, most drs look at the CA125 test as a tool to be used with other tools together to get a diagnosis. Many things can cause a rise in CA125 including endo. So that being said, have you had any other tests to rule out cancer? Sounds like between four drs, you have covered your bases very well.

I had a tah/bso plus all kinds of other stuff. Sex is not painful anymore so that is good. I don't bleed gigantic clots anymore, so that is good. My ovarian cancer was caught so that is good. I had my cervix removed and my bladder repaired at the same time. All looks and feels pretty good. I'm glad it is behind me and I am moving forward.

Good Luck to you - RobinS
Unread 03-03-2002, 09:01 AM
New Sister in waiting..

Thanks for all the responses!

No, they had not done any further testing for cancer. I was interviewing prospective gyns for surgery and that is why i saw 4 doctors. It wasnt for the ca125 results..but they all seem to feel that a range of 100 indicates endo?? Either way, they all recommended surgery..wondering how they know if its on the bowel or doctor did examination and said it was
contained?? didnt think that he needed to do a does he know that by just feeling??

The last time i had a lap, they burned me from not using the grounding pad properly. That was in 96. a rare occurance i am told. I was told that they have safe guards now-a-days!

I have been getting MS-type symptoms and this makes me very worried about having this surgery. Pains in both legs feel like vein or nerve problems. Been seeing many doctors to rule out blood clots in legs or circulatory problems prior to surgery. Even having a stress test.

can someone explain what the bso/etc. means.
also, how long for lapro hyster to heal. If i have hyster in April, can I take a cruise in early june?
Unread 03-03-2002, 09:55 AM
New Sister in waiting..

About bowel endo. I have a mass on my sigmoid colon, but nobody could detect it my a manual
exam. I would have horrible colon spasms during my "endo cycle" and would pass out on the "john" and vommit. I have to take an anti-spasm sublingual pill (absorbs under the tongue and gets into system quickly) called Levsin to help when the spasms start. Anyway, they did a CAT scan of my sigmoid colon and the mass showed up on the CAT scan in June 2000. They did a colonoscopy and it wasn't on the inside of my colon, so they said it was endo on the outside of my colon. They just did a MRI this past November 2001, and the mass is still there. I will have a bowel resection with my hyst by a colon surgeon. If you are having bowel symptoms please have them look at your colon when they get inside. I am so happy I didn't have my hyst before they figured out the bowel problem so that they can work to repair that at the same time.

I wish you all the best, and sending prayers your way.
Unread 03-04-2002, 08:52 AM

My doctor is knowledgable about bowel involvement endo, and he usually has a surgeon assist him with these kinds of surguries. I am getting the feeling that I will probably be out of commission for a while!

I had a CT scan without contrast..and it didnt show anything..but when he did an internal, I was in a lot of pain up high,rectally.
I think the doctor thinks that since its not showing on any tests, that its not too bad. I too get weak after a bowel movement. No spasms, just a weakness. I do get spasms down in my legs however, which worries me tremendously. Nobody says that these leg pains are from endo...but I have a bad feeling about it.

After hyster, does your blood pressure change? I would think that if you remove a large organ like a uterus, the blood must re-distribute differently in the body.

I have low blood pressure, and Im worried that I will have a problem with this whole surgery thing...


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