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Old 01-06-2005, 01:09 PM   #1
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Olyveoil HB User
Question Hello, I'm new here and have a few questions..long post.

Hello everyone,

I've been reading everyone's posts with great interest. I was diagnosed about 4 years ago with FM, SLE, and last year with ADD. What a combination.

Anyways, I've never really gotten into trying to research these disorders too much, because frankly I forget to (I believe that the forgetfulness is related to the ADD). So, yesterday my husband comes home and tells me about a treatment that is performed on women with FM and abnormal uterine bleeding (that's me) called cryoablation. My problem is this: Whenever I get stressed about anything, and I mean anything, I start bleeding. Then, if the bleeding persists, I end up with a yeast infection.

I used to have these really, really bad period cramps (this icluded blacking out and vomiting) until this wonderful young lady told me about evening primrose oil (oil of wonders) and those cramps have become a thing of the past (for the most part).

First, does anyone else have this problem with bleeding related to FM? Second, if you do, have you ever heard of the cryoablation? Has anyone on this list ever had this procedure done? I'm hoping that this will be an answer to my problems. Apparently, this procedure will stop the bleeding, even periods, without having a hysterectomy.

Anyways, that's it for now with the questions. I look forward to getting to know you all. Thanks in advance for your help with my questions.

Olyveoil...(O:

 
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Old 01-07-2005, 09:59 AM   #2
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Re: Hello, I'm new here and have a few questions..long post.

Quote:
Originally Posted by Olyveoil
Hello everyone,

I've been reading everyone's posts with great interest. I was diagnosed about 4 years ago with FM, SLE, and last year with ADD. What a combination.

Anyways, I've never really gotten into trying to research these disorders too much, because frankly I forget to (I believe that the forgetfulness is related to the ADD). So, yesterday my husband comes home and tells me about a treatment that is performed on women with FM and abnormal uterine bleeding (that's me) called cryoablation. My problem is this: Whenever I get stressed about anything, and I mean anything, I start bleeding. Then, if the bleeding persists, I end up with a yeast infection.

I used to have these really, really bad period cramps (this icluded blacking out and vomiting) until this wonderful young lady told me about evening primrose oil (oil of wonders) and those cramps have become a thing of the past (for the most part).

First, does anyone else have this problem with bleeding related to FM? Second, if you do, have you ever heard of the cryoablation? Has anyone on this list ever had this procedure done? I'm hoping that this will be an answer to my problems. Apparently, this procedure will stop the bleeding, even periods, without having a hysterectomy.

Anyways, that's it for now with the questions. I look forward to getting to know you all. Thanks in advance for your help with my questions.

Olyveoil...(O:
Hi hun. First of all, welcome to the boards. You will find a lot of good support hear, no cures, but a lot of good advice and freindly support.
As for the procedure you mention (I won't even try to spell it), I think I have seen this mentioned on somekind of TV show. I had acute fibroids and in 1999 I had a partial hystorectomy. I think this procedure is new and it "freezes" the fibroid or bad tissue in your uterus that is causing the excessive bleeding. Just seeing the part of the word that had "cryo" in it usually means "freezing" of some sort. I'm sure you have heard of, or even had yourself seen the "steamy looking" stuff they use to freeze of warts. Basically, from what I understand, it stops the bleeding by "disabling" the bad tissue that causes the bleeding. I have heard that a lot of women use this procedure in order as to NOT have a hystorectomy, especially if they are young and still want to have children. I actually was happy to hear the words hystorectomy come out my surgeons mouth! LOL I was 40 and knew I wasn't having any more children and the idea of never having a period again was like sitting down with a bag of oreo cookies and eating the whole thing!

Do you have a doctor that is recommending this procedure? Make sure you get all the info, and don't be afraid to ask as many questions as you want. That's what doc's are for. Also make sure you ask about any side effects as a result of the procedure, if there are any. My surgeon didn't tell me that sex may be experienced differently for me after the surgery, even though I still have my ovaries.

I wish you luck and I hope that if you have this procedure, it makes you feel better. I think I have seen other posts here that refer to excessive bleeding during female periods. You can do a search on the boards to see if you can find any posts that refer to that subject. Losing more blood than you are meant too will certainly make you anemic (sp?). ( I swear, ever since I was dx with FM, my spelling ability has gone right out the window, I wish someone would do a study on that)

Anyway, welcome and good luck. Keep us posted for sure, as other people here may benefit from what you experience.

much love,
tk

 
Old 01-08-2005, 06:08 AM   #3
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Re: Hello, I'm new here and have a few questions..long post.

Hi TK,

Thanks for the reply. I am nearly 40 and have thought seriously about a hysterectomy, but I saw this story on Dateline about several women who completely lost their sex drive due to the incisions cutting directly through those nerves that apparently have a lot to do with sexual stimulation. I haven't mentioned it to my doctor, but I'm trying to gather as much information as I can about it.

My husbands' co-workers and friends all know that I have FM, Lupus, and Adult ADD (I usually try not to share this with everyone...it's my wonderful gift and I don't want to make everyone else miserable...lol). Well, one of his friends who works at a hospital up north (I'm in Florida) was down for a visit and he told my husband that the docs up there have started using this procedure to treat FM patients who bleed all the time. I know that I don't have fibroids (thank God for that) and I have been watching to see what sets this bleeding off. Stress. Plain and simple.

So, when you had this procedure done, was it painful? How long did it take for you to recover?

Thanks so much for answering my questions.

O

 
Old 01-08-2005, 09:02 PM   #4
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Re: Hello, I'm new here and have a few questions..long post.

Quote:
Originally Posted by Olyveoil
Hi TK,

Thanks for the reply. I am nearly 40 and have thought seriously about a hysterectomy, but I saw this story on Dateline about several women who completely lost their sex drive due to the incisions cutting directly through those nerves that apparently have a lot to do with sexual stimulation. I haven't mentioned it to my doctor, but I'm trying to gather as much information as I can about it.

My husbands' co-workers and friends all know that I have FM, Lupus, and Adult ADD (I usually try not to share this with everyone...it's my wonderful gift and I don't want to make everyone else miserable...lol). Well, one of his friends who works at a hospital up north (I'm in Florida) was down for a visit and he told my husband that the docs up there have started using this procedure to treat FM patients who bleed all the time. I know that I don't have fibroids (thank God for that) and I have been watching to see what sets this bleeding off. Stress. Plain and simple.

So, when you had this procedure done, was it painful? How long did it take for you to recover?

Thanks so much for answering my questions.

O
Hi. First let me thank you for asking me for advice to help you out, if I can. I want to say something about the loss of libido after a hystorectomy though. I think docs are just now taking a hard look at this side effect. I told my doc (GP) about this, and he did a hormone test and did find out that my testosterone was low, but, I told him that I noticed a different almost immediately after the surgery and he didn't understand how I could experience sex different or loss of libido since I still had my ovaries, but when you mentioned about all the nerves being affected it makes sense, and I hope that more research is done for this, cuz I know a lot of women suffer from this. Make sure you talk to your doc about this. I haven't checked yet, but I'm betting that there is a section here on the boards that shares info about this kind of thing.

I don't know anything about excessive bleeding with FM. Has your doc explained to you why this happens, and have you read the other posts on the FM board from women who have the same thing? Does it maybe have something to do with your Lupus also? Can't Lupus sometimes affect your internal organs? I know that a lot of people compare FM and Lupus saying they are similar, but I know that Lupus can be more debilitating than FM, it can affect your organs, and it is a noticeable inflammatory condition where FM isn't usually. Also, as you probably already know,alot of Lupus patients usually have Lupus and then get FM. I'm sure I'm not telling you anything new, but sometimes I think Lupus is compared too closely with FM. I know when I first got FM, a lot of people confused it with Lupus.

You have heavy periods as well as breakthrough bleeding? Have they tried putting you on a low dose of b/c? I'm wondering if your uterus isn't enlarged, or tipped. Do you have bad cramps?

As for the procedure, mine was done the old fashioned way since the fibroids were so large they had to go through my abdominal area, which is the ever flatterning smiley face cut! (actually my incision looked a lot like that little smiley, big grin with the staples being the braces!) And yes, I won't lie to you, it was pretty painful. I sometimes wonder if my FM wasn't triggered by this surgery. I was in the hospital for about a week, 5 days I think, maybe a day less. They gave me the little "magic button" to press for my pain, and sent me home with Percodan. The worst part was when I got home, we had a waterbed at the time, and I couldn't get out of it! It was funny really, I was like a turtle on my back! So I spent the week on the couch until I was healed enough to get in and out of the waterbed. Another humilating part of recovery with that kind of surgery is needing help off of the potty! My poor husband, while in the hospital I was mostly on an IV then on liquids, so all that "liquid" built up, and when I came home, all that liquid started making it's way out, so I need to be helped off the potty quite frequently the first night I was home!

You will be suprised how much you use your abdominal muscles for the smallest of tasks. They send you home with a "tummy pillow" so that when you cough you can hold it against you and not feel like your incision is going to bust open! I'm sorry, this is probably scaring the heck out of you, but I want to tell you at least what I felt. My aunt had the same surgery and felt basically the same. Just getting up and walking around is the best way to get better. It was only about a month and I could start wearing my jeans again. Before that, they were too tight and put too much pressure on that area. But I will tell you, after having the surgery I felt so so much better. My aunt was the same, and her fibroids were worse than mine. My doc said my stomach was swollen about the size of someone who was 3-4 months pregnant.

Now, I will give you the good news. They have a different way of doing some hystorectomies, it's been around for awhile actually. If you need just a simple hystorectomy and your uterus isn't too enlarged they will take it out without making the large incision in your abdominal area.They don't have to go in that way at all, so no incision. It's called a "vaginal hystorectomy". Which is just as it's called. They remove your uterus through your vagina. This may be a bit too "off subject" for the FM board so I'm suggesting that you talk to your doc about the details of exactly how this is done.

Your problem may be caused by FM, but the procedure may fall under another area of this board so I don't want to get off topic.

So, since you don't have fibroids you may be a good candidate for the less invasive surgery, and I know for a fact that the recovery is less painful and a lot faster. I had a freind who had the less invasive surgery done way back in 1982, so I can imagine it's probably even better now.

But you may not need any of this, hun. Since now they can just freeze the area of your uterus that is causing you to bleed so much. Like I said, I know they do it for people who have fibroids that aren't too large. But especially since you have FM, be sure to talk to your doctor about your recovery after whatever kind of procedure you have. Because, as you know, us Fibromites seem to take twice as long to heal from practically anything! LOL And seriously, I would make sure to find out how this procedure is going to sit with your Lupus.

Did I go on a wee bit long? I do that! I guess it comes from spending so much time alone.

When do you see your doc next? I would be interested in hearing what he says is the cause of your excessive bleeding. Keep us all posted and remember your experience could very well help others here who are going through the same thing.

I hope I helped a bit, even though my answer turned into a small novel!

Goodluck, and please keep us posted.
tk

Last edited by tkgoodspirit; 01-08-2005 at 10:15 PM. Reason: Because as usual, I'm too dense to preview my posts

 
Old 01-17-2005, 09:45 AM   #5
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Re: Hello, I'm new here and have a few questions..long post.

Hi TK,

I'm sorry to take so long to get back on this board. My husband has spent the last week and a half trying to fix things around the house before he had to head overseas to Iraq.

I loved reading your post, not it's not too long and it's very helpful. I do know what you mean about incisions across the abdomen though. In July of 2002, I had what was supposed to be a one-day visit to the hospital to have my gallbladder out. This was done lathroscopcally, buuuutttt...they screwed it up. After they removed the gallbladder and stapled that little bitty incision closed, when the anesthesiologist brought me out of the general anesthesia, I didn't wake up. In fact, I quit breathing altogether and my heart stopped beating. They had cut a major artery internally and I bled out into that area just below my diaphragm. Needless to say, they scrambled...shocked my chest with the defibrillator, put a cathertor into the femoral artery straight to the heart with epinephrine, and put me back under general anesthesia when they revived me. It was then that they cut me completely across my abdomen just below my rib-cage. And I mean all the way across. I had 38 staples and lots of steri-strip on that incision. After they tried to fix what they had screwed up, I had to stay in the hospital for the weekend (3 days that time), when released, I ended up going back to the emergency room not once, but twice. Apparently there was still some bleeding going on in there. Then to top that off, the bleeding caused my right lung to collapse, which in turn caused a different more competent surgeon to tell me that if the bleeding didn't stop after a nights' stay in the hospital that he woul have to re-operate to locate the source and stop it up. Well, I ended up in the nicest suite (hospital room) with a round the clock private nurse for another 4 days in the hospital. I never got a bill for either stay in the hospital and these things were never written into my medical chart.

The lupus had already begun to attack my organs and I didn't know that I had it at the time, but had been diagnosed about 8 months before the gallbladder surgery. The doctor that did the surgery took it upon himself to tell me that my symptoms were psychosesematic and that it was all due to the loaded gallbladder. Then he stopped all my meds completely and never even consulted my rheumatologist. He tried to keep me in the hospital for a week, but I pitched an ugly little fit to get out of there and I ran straight to my family doctor and tattled. Then I ran to my rheumie and told him, too.

By the way, almost all the skin above that incision is numb permanently. Now the lupus is working on my kidneys, has been for a while. As for that bleeding, I bled so much that I went to the emergency room (different hospital) and the doctor that examined me there said that he was very sure that it was caused by the lupus not the FM and that it was the most extreme case of stress-related pro-longed vaginal bleeding that he had ever seen. I was working for a lawyer at that time (very stressful job).

Last week I went to my local health food store where there is an herbalist who really knows her stuff. You asked if I had cramps...yup, I sure did. Very severe that caused me to vomit and pass out. I was put on b/c by the gynecologist which worked for a little while, but then the bleeding started up again (I've been dealing with this problem for about 5 years now). Well, I got tired of taking the b/c because they were not working, not even for the cramping. I happened to mention to this herbalist that I was having the cramping, bleeding, and such as well as SLE. She recommended that I try a very simple treatment that I swear by now. Evening Primrose Oil. Great stuff, ever since I've been taking it (over a year now), I don't suffer from cramps nearly as bad as I did before. Now I just get them occassionally and I can put a warm heating pad on my tummy and after about 30 minutes or so I'm as good as new. I have been checked for fibroids, but don't have them.

But, I got off the path a bit here..lol, I went back to see the herbalist and she recommended another herb concoction that is supposed to help regulate my cycle and to stop excessive bleeding. I've been taking it since the day before my husband left, so that would make it last Thursday. The bleeding has almost completely stopped. So, maybe there is hope. IF this doesn't do the trick, then I'm going to discuss the cryoblasty with my doc and see what he thinks. To me, it seems like the safest alternative to a hysterectomy.

I know this is long (I can write books, too...lol). By the way, on top of SLE and FM, I have ADHD. This makes it very difficult to stay on task, especially combined with the absent-mindedness of SLE and FM. My rheumatologist told me that once the memory was gone, it was gone. Before I was diagnosed, I seriously thought that I was getting alzheimers. Thank God it's not that, but I still don't like the memory loss.

I do hope that you get this. I enjoy reading your posts. I am always shocked and amazed to read someone else with my exact same symptoms. I had felt for the longest time that I was the only one like me and no one else could possibly know what it's like. Now I know different.

Thanks for the advice on the "female" thing. I'll keep checking for your posts.

O

 
Old 01-19-2005, 01:46 PM   #6
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Re: Hello, I'm new here and have a few questions..long post.

Hey! I'm glad you found something that helps you without resorting to surgery. I'm suprised you'd even consider surgery after all that you went through with your gallbladder. YIKES! What a mess up. You poor thing.

I'll make a bet that having Lupus isn't making your situation any better since it has a tendency to attack larger ograns. I doubt that it has anything to do with FM. Maybe feeling more intense cramps would be because of the FM, since we are more sensitive to pain.

I've heard so many success stories about evening Primrose helping for all sorts of health problems. I'll have to check this out. Hmmmm..... I used to use a supplemental regimine religiously, but have fallen off so I'm going to start getting back into it. I'll definately add evening Primrose to my list.

And your husband is in Iraq? That in itself would cause health probelms for you, being nervous. Are you alone? Is he Regular Army,Marines,NG or Reserve? Are you on an Army base so that you have some support system around you? What is your husbands MOS? Where will he be over there?

Can you tell, I've been around the military before? LOL I was in the Army in 1978 for awhile and my first husband was Army. We were together for 14 years, so I'm pretty familiar with the lifestyle. How long is his tour for? Or is he a civilian working over there? Ain't I the nosey one? LOL

I just know what a sacrifice it is for you and your family to go through. Do you all have children?

You sound okay (strong) and I totally believe you will overcome whatever is thrown your way.

You are still working? You could probably get SSD based on Lupus. Working is hard when your physical condition is messed up.

I've been feeling nasty the past week or so. I've been really nauseated and throwing up, so I finally went to the doc yesterday and he thinks it's something viral. Of course it will take me twice as long to get over it because of the FM. But he gave me anti-nausea pills and they have helped a lot. I actually ate a PBJ sandwhich today without feeling like hurling afterwards! LOL

When, honey, I'm glad you're feeling better, and I hope it stays that way. Keep me posted on how you are doing while your husband is overseas fighting for a good cause. Both yours and his sacrifice for our country goes above and beyond.

(gotta ask, if you are Olyveoil, is your husband Popeye?) Sorry, just had to do it!

Be well,
tk

 
Old 01-19-2005, 03:48 PM   #7
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Re: Hello, I'm new here and have a few questions..long post.

Hello, I'm new here too. I found this board just today on my search for answers to some of my questions, but found myself needing to post to your question first!

I too have FMS/CFS, a "lupus-like" condition, polycystic ovary syndrome, anti-phospholipid syndrome and believe it or not, just before the holidays was diagnosed with an "attention deficit". UGH...

Anyway, I also have had significant bleeding problems in the past. I say in the past because I did have a similar surgery to what you are describing. You are asking about cryoablation (which is freezing)...I had hydrothermal-ablation (HTA) (which is burning). after HTA you can no longer have children.

My bleeding issues were: monthly cycles that were 21 days, extreme cramping between and at the time of bleeding, bleeding so heavily that I couldn't leave the bathroom for the first two days of my cycle (soaked one super tampon in 20 minutes), bleeding lasted for 9+ days, then began again within 5 (mid-cycle bleeding) which lasted about a week, then started back up again a week later. I was anemic and exhausted to say the least! Birth control pills made me feel so bad that I couldn't take them...

My official diagnosis for the bleeding disorder was Polycystic Ovary Syndrome. If you research the disorder you will see that many references suggest that "lack of bleeding" is a symptom, and do not mention extremely heavy and irregular bleeding, which is also a symptom, although less common. Other things to look for: multiple cysts on the ovaries, Infertility (can be intermittent) due to lack of/improper ovulation, Thick dark hair (like men have) growing where it isn't supposed to: on your chin, upper lip, sideburn area, neck, upper or lower abdomen, lower back, inner thighs, fingers, toes, and upper arms. and Cystic Acne

The surgery cut back the bleeding to what would be considered a more "normal" period (two to three regular tampons per day for first two days), then light spotting, but it still lasts about 7 days. But it did absolutely nothing to fix or cure the underlying PCOS, which is an endocrine/hormonal imbalance and needs to be addressed due to some serious health issues it can cause (that I'm just finding out about).

I'll give you the flat-out-honest-truth about the surgery...When I came to (from general anesthesia), I was totally unprepared for the amount of pain that I experienced. I had the worst pain you can imagine, worse than full-blown active pushing labor (if you've had children). I actually thought (coming out of anesthesia) that I WAS delivering a baby! The pain got worse by the second. They gave me a shot of something which did nothing, then another shot of something, which again did nothing. Luckily, my Post-Anesthesia nurse had Fibro and understood the pain I was in and immediately had the Anesthesiologist return and administer two shots of morphine, after which I could finally breathe! Once that pain cycle was broken, it was smooth sailing. I had one more shot of morphine, then on to percocet. They sent me home four hours later with Vicoden. I took two Vicoden at 8pm, and at 11pm and never took another one.

I guess due to my already high tolerance to pain, and being used to extreme cramping, etc., just bedrest and heating pad were enough. My GYN said that it was amazing that I recovered so quickly from the pain, as most women complain of mild cramping for about a week. Most women have the procedure done on a Thursday and return to work the next Monday. I did end up flaring from the surgery/anesthesia/trauma and missed two weeks of work, but had no pain from the surgery itself.

I hope this information helps you or someone else that stumbles across this post. Feel free to e-mail me.

And Good luck.

[ please carefully review the posting rules - no emails ]

Last edited by moderator2; 01-19-2005 at 06:32 PM. Reason: please carefully review the posting rules - no emails

 
Old 01-19-2005, 07:49 PM   #8
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Re: Hello, I'm new here and have a few questions..long post.

Wow! I'm glad to get such great reponses. I love your posts, TK. I had to laugh when you asked if my hubby is Popeye. Yup, he sure is. Blonde, blue eyed, and well muscled. He's actually in a place called Qatar and active duty in the Air Force. He's been in nearly 18 years and this is hopefully his last tour over there. This is his fourth or fifth time over there.

I'm really sorry that you haven't been feeling well, I know that feeling. If I accidentally miss a meal, then I get really nauseous when I try to eat later. I haven't discussed disability with my doc, but did discuss with him today the cryoablation. He had heard of it, and when I let him in on the fact that I've had a bleeding problem since before August, I could see great pity in his eyes. He asked me who I last saw for my pap and I told him that I couldnt' remember her name and that she actually didn't see me at all, but that a colleague of hers did in her place. The pap went fine and there were no obvious problems other than a kidney infection.

He's checking me for anemia as I've been feeling pretty tired lately, like lead weights hanging on my hands and feet. But, I have a very hard time not doing anything. It must be the ADHD. My mind is always going faster than my body can keep up. This past week I have been salvaging a lot of building materials from some old Navy housing that will be razed to the ground in about a week or two. With the help of my 17 year old, I've removed solid wood cabinets from two kitchens, one vanity complete with sink and hardware, two gutter systems, one storm door, and my mother in law and I have rescued perfectly good insulation for the underside of my house.

When I first found out that I had lupus, it was pretty devastating. Thankfully, there were friends around that actually had the disease, too. The best advice they ever gave me was to not let this disease get me down. It was hard for me to comprehend what they meant for a while, but then it clicked for me. I refuse to take anything that makes me a little loopy, except for the Klonipin to help me stay asleep at night. The Celebrex isn't working as well as it used to and I'm having to go to an eye specialist to make sure there aren't any deposits of hydrochloroquinine inside the eyeballs.

Other than those things, in my mind that seems like an awful lot, I feel fine. I have lost a total of 38 pounds and still losing which has made a tremendous change in the way I feel physically for the better. I still need to lose about 40 more. I had topped out the scale at 198 pounds, I was actually heavier than my husband and that to me was soooo embarrassing.

Oh, I also started my own business. The only bad thing about that is so far I've only had two calls...one from someone looking for a job and another looking for a woman. I'm doing construction site clean up after new homes are built. I'm real excited because I have a handicap and it won't matter to anyone but me. My last job was a real disappointment and I must say that the thought of being my own boss is very exhilirating.

So, how 'bout you? During your tours in the army, did you ever go to Alaska? We were stationed up on Elmendorf right next to Ft. Richardson and it was great. Other than there, we've only been here in Florida. I loved living in Alaska and would love to live there again. I told my husband that if we were to ever move back up there, I would probably go back into Dental Assisting (they make excellent money up there). It was kind of funny doing that kind of work, I was sick every weekend and couldn't spend much time with the family. Now I know why...a weakened immune system.

Oh well, I could go on and on about life in the military as a dw. It has been great and the people are so nice. I still keep in touch with some of my friends that I've made over the years and miss the ones that I don't see or hear from anymore.

I would love to hear more about your time in the Army. I had several friends who were Army, great people to know.

Talk to you later,

O...(O:
><>

 
Old 01-19-2005, 08:06 PM   #9
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Re: Hello, I'm new here and have a few questions..long post.

Hi Am!

Wow! What a story. I haven't heard of the hydrothermal-ablation. When I discussed the cryoablation with my doctor today, he said that he'd heard of it for treating fibroids and that it was basically the same as a D & C (which I've never had one of those, either). He gave me the telephone number to an ob/gyn doctor that has experience with this type of thing, now I need to find out if she takes my insurance. We have Tricare and it's a real pain. Fortunately, we don't have to get prior approval through my PMC provider for an ob/gyn appointment.

I already have two children and one grandbaby (who is the most beautiful, smartest, precious baby in the world). I don't think I will be having anymore babies. I'm at that time in my life where I really want to spend special time with my husband and this thing with the bleeding is really a huge turn off, if you know what I mean. I can certainly relate to the heavy bleeding. I even went to the emergency room back in September because I thought that maybe I'd torn something internally. I was changing those really, really big pads about 6 or 7 times a day and was also using those super absorpbant tampons, too. I'm going to write down this info that you've shared with me and take it to the doctor when I go so that I can ask some questions about the different alternatives to a hysterectomy. I just hope there is something out there that will help. I know it's not birth control pills, I tried those and they only worked for a short time. Unfortunately, the doctor that was working with me on this problem was active duty in the Navy and she retired down to South Florida. Although I can't blame her, she gets paid much more money than she did here. So, I've been left without a good doc. Hopefully, this one that my rheumatologist suggested is going to be a good one.

I'll let you know how it goes. Oh, how's it going with the ADHD? I haven't really gotten into a great support group, yet, but hoping to find one. Preferably online, it's quicker and easier. Let me know if you find one. Now that I've had a dx on that front, it sure explains a lot of things about my behavior. I only wish that I'd found out sooner. Oh well, it's never too late to learn new things. Now the only thing is trying to remember them...lol.

I'll talk to you later. This girl has to get up in the morning to attend a workshop on how to open and operate a small business in the state of Florida. It should be very interesting.

Have a great evening. I look forward to hearing from you and TK again.

O...(O:
><>

 
Old 01-20-2005, 06:05 PM   #10
Newbie
(female)
 
Join Date: Jan 2005
Posts: 5
AmethystInLight HB User
Re: Hello, I'm new here and have a few questions..long post.

Hi again,

Good luck with the GYN. The one I have now is phenomenal. I hope you find one as wonderful as mine is…

I’ll bet that grandbaby of yours is the most beautiful, smartest, precious baby in the world! I can’t wait for grandbabies! Well…yes I can…my kids are too young to be bringing home babies yet…but I can’t wait until they are finished with college, have their doctorate degrees, are making six figures a year, and THEN have grandbabies! I just love the idea of snuggling and spoiling and then giving them back (but only after a long, long visit)!

That sucks about having to go to the ER for the bleeding! What a nightmare. I probably should have gone once or twice too, but I’m stubborn. I figured if I passed out my hubby would drag me there! 

I tried the b/c route too. They just made me feel worse, fibro-wise, than without them. Aand believe it or not, while I was on them, I got pregnant!

As long as you don’t plan to have any more children, I would definitely recommend getting the HTA. I had the one done with water (hydro). Superheated water flushed into the uterus to burn (basically cauterize) the endometrial lining. Even if I had a few weeks of cramping afterwards (which I didn’t) it would have been worth it since the cramping and bleeding before was debilitating…

Definitely let me know how you make out with it…

The ADHD thing…it’s strange…I didn’t have attention problems as a child, so I don’t have an “adult ADHD” diagnosis. I have an “attention deficit” diagnosis. Apparently there is a difference?? You can’t be diagnosed with ADHD if you didn’t have attention issues before age 12. Apparently, from what I can understand from the doctor, my issue stems from the fact that my body is reading too many “noxious signals” (pain, tingling, etc.) and spends all it’s focus doing that, so I don’t pick-up/process other stuff, like deadline dates and important details, and stuff doesn’t stick in my memory. I’m not sure if I totally buy into it – I have a lot of other cognitive issues too. He didn’t give me any medications for it. Just said that “as I started to feel better the symptoms would get better”. Problem is…I haven’t been feeling better…but worse! Does that mean the attention problems is going to get worse? UGH! Did your doc put you on meds?

How was your workshop? My husband and I own a small business too. It’s tough at first, but after a while you get the hang of it…the tax stuff is the hardest… we had to get an accountant, I just couldn’t deal! It’s worth it to just write him a check and forget about it! Here in DE we actually have free programs where you can go and they help you with every step of starting and running your business, do they have that in Florida? They’ve been an invaluable resource for us…we have our own counselor and anytime we have a question we just call him up and ask away… we can also go in to the center and do all kinds of research, etc.

Take care…I have some kiddies to tuck in…

Have a restful evening…
~Amethyst

 
Old 01-21-2005, 06:09 AM   #11
Junior Member
(female)
 
Join Date: Jan 2005
Location: Florida
Posts: 18
Olyveoil HB User
Re: Hello, I'm new here and have a few questions..long post.

Hey Am,

Great to hear from you again. Funny story about the ER visit. While my friend and I were waiting on the doc, the nurse came in and was going to give me one of those boat sized pads, but there weren't any in that particular room. She left and came back a few minutes later with a couple of them for me and explained, "We don't normally use the genital rooms, we rarely ever get patients here who need them."

My mind started clicking and before I knew it, my mouth just opened up and out came, "Hummm, I can see it now. Rows and rows of vaginas and penises on each wall. Big ones on top because fat people can't bend over for them if you put them on the bottom shelf." She just burst out laughing and I heard her telling the other nurses what I'd said. I think that is a product of an ADHD brain. When I was a child, my mom never thought that I was ADHD because I had so many interests, i.e. reading, bicycling, swimming, crocheting, crafting, sewing. Anything that was new and different I did it (still do). Fortunately for me I was able to channel all that energy into all those activities.

The only time I stopped was when the lupus reared its ugly head. The doctors that I've seen don't think that young children can have lupus, but I beg to differ. I would go until I got so sick that my mom would rush me to the emergency room. Usually it was severe dehydration, occassionally it was extremely low blood iron. I don't know of many children that can say that they had a private nurse that attended their first whole year of school with them. It was to make sure that I ate a very strict diet in iron rich foods. I hated it.

Now onto the business thing. The state of Florida has some really great resources that are either free or low fee. Yesterday that workshop I attended was $20. There will be a four day workshop in March on recordkeeping. That one will be $45. I'm going to pre-pay that one if they'll let me. The instructor said that we all needed to learn to do the books by hand, but invest in a computer program that will do a lot of the headache stuff for us. So far, I haven't gotten any actual business. I'm looking for a company that can make me some signs. My sister calls them card signs. They're those ones that politicians use that are plastic and have the "H" prongs. I'm thinking of going online for a search on these since everyone here has jacked up their prices since Ivan came to town.

What sort of business is it that you and your husband do? Mine is cleaning up new site construction. My husband has actually backed me on it. He won't join me in it when he retires from the Air Force, but plans to open his own business as a carpenter. I know that once I get my signs out that I'll start getting calls. So far, I've only had two calls. One from a man looking for a job and the other was a young man flirting with my daughter (she was driving the truck which has signs on it), he was using the business as an excuse to talk to her. She shot him down...lol.

Oh, my doc did give me the name of an ob/gyn doctor the other day. He asked me who I had seen for my last exam and I told him that I couldn't remember the lady's name. In fact, she didn't even bother to show up for my appointment, but had one of her colleagues see me in her place. I saw something on my doctor's face that I don't think I've seen in the 3 1/2 years that I've been going to him...pity. I'm glad that I have the doctor that I do have, he's terrific and easy to talk to when I need help.

Well, I'm going to close for now. I have tons of stuff to do around this old house and only me to get it done.

Talk to ya later!

O

 
Old 01-23-2005, 07:48 AM   #12
Newbie
(female)
 
Join Date: Jan 2005
Posts: 5
AmethystInLight HB User
Re: Hello, I'm new here and have a few questions..long post.

O,
Too funny about the ER!

That’s strange about the Lupus. I was diagnosed with Lupus by one Rhumy, then undiagnosed by another, then a tentative diagnosis by another…I have many of the symptoms…now i'm dx'd with "connective tissue disorder". My current Rhemy thinks I’m a nut case and doesn’t care to treat me. I have to find a new one, especially in light of a recent doc’s appointment I just had…

Went to an Endocrinologist on Thursday--found out my thyroid is enlarged and I have reactive hypoglycemia & possibly type II diabetes, in addition to PCOS. Also some vitamin/mineral deficiencies. Turns out that a whole slew of my issues can be caused by the thyroid/hypoglycemia issues. Put PCOS and fibro on top if it and it makes for one unhappy girl! No wonder I felt so bad! Doc re-arranged some of my meds, added some new ones and put me on a really strict low-carb/low-fat diet. Have to have a bunch of blood tests done too, but I have to wait a couple of weeks for that. But I feel so much better knowing that there was definitely something else in addition to the fibro going on, because I really felt like I was going to slip away, and all my rheumy kept saying was, “it’s fibro, learn to live with it.”

What a good idea for a business! We have a painting & faux finishing (fancy finishes) business. My hubby works full time for our business. I work on weekends faux finishing, but not lately because I’ve been feeling so icky (we’ve postponed all our faux finishing work by 3 months). I help with the administrative stuff, of course. I work full-time somewhere else for the medical benefits. If I could find a way to pick up decent benefits that weren’t $900/month I would put all my time/effort into our company! As it is, we have to hire someone. I wish it I could quit and it could be me (i.e., I had enough strength, stamina to work full time at such a physically demanding job). I absolutely love working with the customers, helping them to choose colors for their rooms and watching their faces light up as all their furnishings begin to “pop” when the color is applied.

Shhh…don’t tell my boss…Sometimes when I’m feeling bad I’ll take the day off from regular work, sleep in ‘till noon, meet my hubby for lunch, then visit with the customer for the afternoon. It’s so much nicer than the high stress of the corporate world where I work. Hubby insists that we can afford med benefits without me working, but I am afraid it would put too much of a strain on our budget. He says it would be worth it since I wouldn’t be stressed from my job anymore…I’m sure he’s right…

We had those same signs made – costs $59 for 2 sides – here locally, but our logo is multi colors, with gradient shading. I’ve seen the one or two color signs very cheap in the internet. Check the “Political Sign” websites. Have you joined the local Chamber of Commerce? Sometimes other members will give discounts for their services…and just some advice – the H frames are great for sticking in the ground and leaving them there, but for ones you are putting at a site, then removing and putting at a new site, invest in the heavy-duty frames. The H frames break quickly (as we found out!)…

Got to run – we’re under 15” of snow and the kids want to go sledding…they’re bundled so thick they can’t move their arms or legs…need to get dressed before they suffer a heat stroke!

Talk to you later
~Amethyst

 
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