Re: Digest Number 4399

[Guest guest]

Dear Lupies:

I have a couple of questions for you. Has anyone with lupus had female problems and or bladder/urinary problems. Since l999, I've had pain in my lower abdomen, swelling, frequent urination, etc. I have suspected for twenty years that I'm infertile and that I have endometriosis. I found lab tests from ultrasounds that said as far bk. as l999 that they saw a possible mass on my right side of my uterus and my fallopian tubes were swollen. Last week, I showed my distended stomach to my infectious disease/rheumy dr. and she said I may need an emergency hysterectomy. However, another infectious disease/rheumy dr. felt my stomach about six months ago and had no comment at all. I have never had surgery since I was 8. So, when one out of the five gynecologists I've consulted with since l999 said I needed a laprascopy I was to scared to do it. I've heard that hysterectomies are often unnecessary and leave women prone to cancer. Any feedback on this would be freatly appreciated. I am getting another ultrasound this week to see what they see. I was also supposed to consult with a urologist, but fear kept me away. I suspect I may have kidney problems because my edema is so bad and because of my history of uti's. I also was told that I needed an electrocardiagram to check for congestive heart failure which scared me to death. I'm only 45 and I thought that type of illness occurs when you're in your late sixties and up. I find myself very frightened and angry if in fact, I have some kind of mass since four dr's said my cysts have shrinked and do nothing.

I also wanted to ask the members of the group what kind of pain medication they take and at what doses. I know I have an extremely high tolerance, but I've been on mscontin l00 mg, 3 times a day for over two years. I also take 20mg of Betra daily.

I am interested in alternative treatment. I wonder if any of you found any relief from accupuncture or physical therapy or alternative medicines. I was taking venestat which is an herb for my edema, but I decided it wasn't helping. I was also taking fish oil and other vitamins, but I feel discouraged after three months of taking them with litlltle to no results. I now have permanent numbness in my right foot. It feels strange to the touch, almost painful. I was told there's a massage technique for edema and wondered if anyone's tried it.

I feel like I'm blabbing on and on, but I wanted to mention I totalled a car in April and that is the day my edema began. I wonder if there could be a connnection. At the very least, I believe that I entered a flare up because of the accident.

Hope you all are doing well. I appreciate the group so much.

Sincerely,

Royn

robynhelaine@...

[Guest guest]

Robyn, We did a member survey a year or so ago, and found that most of the female members had

already had, or were being advised to have, hysterectomies. I am one of that number. Endometrio-

sis was in my mother's medical profile, as well as chronic nephritis and cardio vascular disease. In

my father's family it was RA, Lupus and Sjogren's syndrome. I had gynocological problems right from

my first menses, and it never let up until I had a complete hysterectomy.

UTI's are common among Lupus patients, as is kidney involvement. If you are having lots of edema,

you should consult with your doctor about seeing a Urologist as soon as possible. Also, having an

OBGYN send you for scans, or, at the very least a sonogram, would answer some questions without

invading your body. It would not, however, tell you if a mass was cancerous or not. That would take

a surgical biopsy.

Most importantly, do not delay getting some answers. Delaying the tests and later regretting it is

not a reversible process. Getting answers and treatment now can prevent regrets later on. Please

seriously consider getting past your fears. I would ask which you would fear most: knowing the

answers as well as you can, or finding out when it's too late? Sorry, but the reality is with Lupus and

many other conditions, the longer you deny it's existence the more damage it can do both physically

and emotionally.

Please see the best Rheumatologist available to you, see the OBGYN asap, and get a urine culture to

know for sure if there is an unusal level of bacteria present in the urinary tract or kidneys. Keep us

posted on your progress, and don't hesitate to ask for support. Loving hugs, MM

[Guest guest]

Hi Robyn,

One of the most common similarities with women who have Lupus is 'female problems.' I was having one UTI after another a couple years or so ago to the point my Urologist and Rheumy were concerned my Kidneys and bladder would have serious problems. As it turned out my bladded had dropped down out of its assigned home. I had what's called a vaginal sling procedure to surgically place my bladder back where it belongs. I no longer dribble urine. I can sneeze and not worry, and I've not had another UTI. It would probably be a good idea if you go see the Urologist. Taking your time in deciding whether or not to have a nonemergency surgery is the smart way. The results from your upcoming ultrasound and a visit to the Urologist (should you decide to go) should really help with your decision. I also think the suggestion to have your heart checked out is justified.

, one of the moderators and also a great lady says: Knowledge is Power. She is so right. The more you know about your body and how it is functioning, the better you will be able to make decisions that will help your body start to function the way it should.

Hugs - a B. one of the moderators

Re: Digest Number 4399

Dear Lupies:I have a couple of questions for you. Has anyone with lupus had female problems and or bladder/urinary problems. Since l999, I've had pain in my lower abdomen, swelling, frequent urination, etc. I have suspected for twenty years that I'm infertile and that I have endometriosis. I found lab tests from ultrasounds that said as far bk. as l999 that they saw a possible mass on my right side of my uterus and my fallopian tubes were swollen. Last week, I showed my distended stomach to my infectious disease/rheumy dr. and she said I may need an emergency hysterectomy. However, another infectious disease/rheumy dr. felt my stomach about six months ago and had no comment at all. I have never had surgery since I was 8. So, when one out of the five gynecologists I've consulted with since l999 said I needed a laprascopy I was to scared to do it. I've heard that hysterectomies are often unnecessary and leave women prone to cancer. Any feedback on this would be freatly appreciated. I am getting another ultrasound this week to see what they see. I was also supposed to consult with a urologist, but fear kept me away. I suspect I may have kidney problems because my edema is so bad and because of my history of uti's. I also was told that I needed an electrocardiagram to check for congestive heart failure which scared me to death. I'm only 45 and I thought that type of illness occurs when you're in your late sixties and up. I find myself very frightened and angry if in fact, I have some kind of mass since four dr's said my cysts have shrinked and do nothing. I also wanted to ask the members of the group what kind of pain medication they take and at what doses. I know I have an extremely high tolerance, but I've been on mscontin l00 mg, 3 times a day for over two years. I also take 20mg of Betra daily.I am interested in alternative treatment. I wonder if any of you found any relief from accupuncture or physical therapy or alternative medicines. I was taking venestat which is an herb for my edema, but I decided it wasn't helping. I was also taking fish oil and other vitamins, but I feel discouraged after three months of taking them with litlltle to no results. I now have permanent numbness in my right foot. It feels strange to the touch, almost painful. I was told there's a massage technique for edema and wondered if anyone's tried it. I feel like I'm blabbing on and on, but I wanted to mention I totalled a car in April and that is the day my edema began. I wonder if there could be a connnection. At the very least, I believe that I entered a flare up because of the accident. Hope you all are doing well. I appreciate the group so much.Sincerely,Roynrobynhelaine@... "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies