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Old 07-23-2008, 04:00 AM   #16
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Re: Scared/down as health gets worse and surgery may needed.

Hiya,

I'd suggest you read the post about the abdomen first otherwise you woun't quite understand why I'm still
Your comments were really reassuring I'm just so so relieved that there's no endo in my bladder I can't describe it. I'm going round cracking jokes
like the old me, I feel that there's been a huge weight lifted off my sholders as I was really concerned they were going to have to remove my bladder.
There is still worry there as we aven't got to the bottom of what the problem is yet. If the mri comes back as no endo at all then we're back to the drawing board and I suppose into examining my bowel to see if thats the problem.
I seem to have been better in the last few days about children as well, even before the good news. I sat myself down one night and thought that I haven't been put on this world to have cildren, perhaps somewhere there's a child that needs looking after that I can help in the future but take things a step at a time, get health sorted first and then once I'm more emotionally balanced think about kids.
Think Dave and I deserve a rest once my health picks up and just enjoy life for a while before we start going through the process of fostering/adopting, what do you think?
Looking forward to starting the enzyme and seeing what happens, will let you know, on the right board of course my progress. I've certainly got enough of it LOL, I like a bargain
Glad to hear your shoulder isn't too bad, you sound really clued up on the natural side of alternative medicines, haven't got much of a clue myself. Take multi oil capsules which help for depression plus multivits, vit c, evening primrose and soon the enzyme. Will be really chuffed if I can reduce my pk's in favour of the enzyme.
Let me know how things r with u, appreciate klnowing your there with me in thought, it really helps to have a cyber friend
Take care and speak soonxx

 
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Old 07-23-2008, 05:13 AM   #17
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Re: Scared/down as health gets worse and surgery may needed.

Scraggy,
Isn't it strange how the mind can work, just hearing about the no endo through the bladder wall and what it did for you mentally!

What I wonder and maybe you could ask when they do your MRI is if they can see scar tissue on that test? If scar tissue doesn't show up on an MRI then that may still be your problem, not the endo but the scars that endo creates. I wonder if anyone on this board knows if scar tissue shows up on an MRI?

As far as taking care of You before thinking of taking care of others, I think it's a good plan of action, you'll need time to get your health and emotions sorted out, and taking some time with your Dave is also in both your best interests. How can you be there for others when your not well yet? Your heart is in the right place though, your a good person. Having a great sense of humor is a great asset when going through what you are going through.

Womens hormones can go all wacko when we are dealing with pain and stress, so some of the depression over the children issue may be coming from that area too. Having your mind eased a bit knowing the endo did not go through your bladder wall again must of been a huge relief. It gives you a chance to rejoice in knowing that much at least for now. You needed a bit of a good news just to ease your mind. 'You just can't be much gladder to be keeping your Bladder'

I'm thinking if the enzymes work really good for you that you still may have a chance of having your own child one day, it's suppose to help with inflammation and scar tissue plus endo, so don't lose hope yet. If it still doesn't work out to keep your uterus then your mind and heart is in the right place in wanting to care for a child that is already on this earth just waiting for the right kind of 'Mom' to love them. There are so many who need a loving home. It will happen one way or another, but your right to give it some time, you've been going through a very rough time of it, and don't forget your care taker Dave, it's almost as stressful on him as it is on you. Worry can wear one out, I know this for a fact. Took care of my sick mother for 3yrs of health problems. She lived with us and it was hard on everyone. She's doing good enough to be living on her own now, not far from where I live.

So happy for you and your bladder...winks. Hope you can get them to use pillows or something when having the MRI test. Don't want to be on that slab hard bed when your back is already hurting. Keep me posted, thanks for taking the time to write! Diana

 
Old 07-23-2008, 06:22 PM   #18
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Re: Scared/down as health gets worse and surgery may needed.

Scraggy,

I have never posted to you before, but I felt I needed to. I also have endometriosis, stage 4, and endo on my bladder, colon, cul de sac, both ovaries, and one kidney. I also have interstitial cystitis which is a possibility for you, of your bladder issues. I am not sure what causes the majority of my bladder pain and problems, IC or endo, because I have both. IC is more common in women with endo, even though docs don't know why.

I felt an urgent need to post because you do not have to have a hysterectomy at this point, and give up on having your own children. It may be difficult, and it may be that endo has damaged your fertility, but a hysterectomy is not the answer right now.

A MRI is a terrible way to "see" endometriosis. It is certainly not what I would base a hysterectomy on. Research shows that if your endo is just effecting your reproductive organs, than a hysterectomy could resolve your pain. This is not the case for you however, and I feel that the doctors you have seen are looking for a quick fix.

If you want children, do not have a hysterectomy until all other options have been tried. I was where you are. I suffered chronic pain and endo ran my life. I tried Lupron, different horomones, surgery after surgery. I finally decided that I had to stop blindly trusting the doctors and be my own advocate. I researched my disease endlessly.

After several laparoscopies, and little to no relief, I did my homework. I found that excision surgery is the only way to truly remove endo. I had that surgery, and it has been four years since I have had to have major intervention due to endo. I also researched my chances in having a baby. Sure, we have all heard our chances are slim to none, or none altogether.

Remarkably, after all these years, all the endo, all the scarring and adhesions, I finally decided to check the status of my fallopian tubes. I have been told that they were literally covered with endo. Well, they may be covered, but they are clear!! I could not believe it.

I have been through hell with this disease, but I will have a baby. If I had listened to so many of the doctors who said it was time to throw in the towel, that wouldn't even be an option. Find a endo specialist. Find a reproductive endocrinologist. Find a surgeon who can remove your endo with excision surgery, lessen your suffering, and give you more time to try and get pregnant.

If you research this, truly, you will find that a hysterectomy may not even help your pain. If that's the case, why give up your ability to have children? I am not going to. I have had seven surgeries, and they have all been to try and maintain my fertility. I truly would not be writing this if I felt it was time to throw in the towel for you. It's not. Make sure you have no chance before going through with this.

Your Friend,

Amanda

Last edited by butrfligirl28; 07-23-2008 at 06:52 PM.

 
Old 07-23-2008, 07:35 PM   #19
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Re: Scared/down as health gets worse and surgery may needed.

Thank you so much for jumping in her butrfli, I was just posting to someone else recently and looked something up, this is what I found for her, I'm not entirely sure what it was, just advised a search on it. Wow kind of coincidental!

I'm still reading you post I'll be back soon on what your talking about, very interesting, hope they do more than an MRI for sure.

Still reading and Jumping up and down with your news with being able to have a child, I can't imagine the relief Scraggy must feel to even read these words. So very glad you jumped in here.

Thank you Amanda, God sent an Angel.

Last edited by drs; 07-23-2008 at 07:40 PM. Reason: adding to post

 
Old 07-24-2008, 05:06 AM   #20
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Re: Scared/down as health gets worse and surgery may needed.

You both are more than welcome! You have been an awesome friend to her, all I can offer is knowledge about this disease. I hope it does give her hope, because it should. A hysterectomy is the absolute last resort. Please let me know if I can help in any way!

Your Friend,

Amanda

 
Old 07-24-2008, 05:14 AM   #21
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Re: Scared/down as health gets worse and surgery may needed.

I hope she comes on the board and reads your post before her MRI this morning.

Scraggy, heads up, read the page 4 post from butrfli!
It's been awhile, I'm adding on this post, still waiting for Elaine to respond. Hope your feeling ok after being on that slab for the MRI.
Diana

Last edited by drs; 07-25-2008 at 08:44 PM. Reason: Adding on to post.

 
Old 07-26-2008, 06:18 AM   #22
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Unhappy Re: Scared/down as health gets worse and surgery may needed.

Hi Diana,
Not sure to be over the moon or in tears reading Amandas post. I realised that the hysterectomy may not completely solve the problem as if I've got endo on organs that can't be removed unless they remove every cell present there's a chance it can come back. I'm stopping taking the addback for the zoladex which is low amounts of oestrogen on gynaes instructions to see if its the Livial thats causing some of the pain but he wants the mri to be as bad as it could be. I've also started taking the enzyme now. I'm at a bit of a loss after reading that and yesterday. It was really painful having to lie with a really full bladder for over and hour whilst they did the scans, counted to 800 then tried relaxation breathing techniques before having to ask them how much longer as I though I'd have an accident it had been that long and the pain was awful.I'm not sure where to go from here as if the mri isn't the answer for identifying endo what is. You know I've paid private to go to this gynae as he's the one of best in the country and people travel miles to see him, having to stay overnight in a hotel just to get to talk to him.
I suppose see what the mri shows and what his reaction to it is, really overwhelmed by it all really now and in quite a bit of pain as well.
I don't see him until 12/8 unless I can get it pulled forward to next tuesday but I don't know if the mri will be read by then, or if he'll have the results from the other surgeon by then. I'm going to have to wait a week which isn't bad tiem wise but it is worrying if this is going to find anything or if I'm just going round in circles. Sometimes wish I could just open myself up and find out for myself what going on. I picked the wrong profession by miles, accountants aren't much use when you're in pain.
Hope you're doing ok and its probably too soon to see about the enzyme.

Need to go and digest the info a bit I think. They wouldn't tell me anything yesterday as to whether they'd found anything or not. Will have a think and post again later today I promise.
Take care in the mean time and hope you have a gr8 saturday morning. Hugs
Elaine

Hi Amanda,
Must admit was moved nearly to tears with your post. Thanks for taking the time to let me know about yor experiences. I already wondered as it can only pick up quite large endo deposits and its not the size or number that important as it can differ from woman to woman.
I've read through your post several times to make sure I've got it into my head. My new gynae is an endo professor and he was debating whether hysterectomy was the answer. He has done excision of endo on me numerous times in the past and is waiting to see the result of the mir before deciding whether to operate at all, whether it is endo thats the problem, treat it with drugs or hysterectomy. It seems all options are open at the minute but I am now really concerned that he's using the mri as the deciding factor as to which course of action to take. How else are you going to see if endo is present without just opening you up to look which he is not prepared to do due to all the other surgeries I've had. Must admit I'm now quite concerned that if the endo is small he may go back to its IBS, which there are no tests for in my knowledge. Its brilliant news re the kids issue but if I cant get out of the pain and off the opiates and endo treatments and get my body back to having periods, haven't had them for 8 yrs how am I going to have a baby. I'm not sure I can get off the pk's as I have injured my back as you've probably read and thats incurable. I was hoping the mri was going to be the answer and we'd be able to take it from there now I'm not sure what to do. If he says that there's nothing there is there but is it too small for the mri to pick up. What techniques have your gynaes used to identify if endo is back or not?
I agree I'm really lucky that Drs has been there for me, you as well. I'm really lucky to have such a friend as I don't know how I'd have got through some of the pain sometimes without some1 to talk to. Not sure whats the answer to the pain, difficult to live with every day. Really appreciate your post and any more you're prepared to send. Take care
Elaine

 
Old 07-26-2008, 10:35 AM   #23
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Re: Scared/down as health gets worse and surgery may needed.

I'm going to post back later. Nice to hear from you Elaine.

 
Old 07-26-2008, 10:53 AM   #24
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Re: Scared/down as health gets worse and surgery may needed.

Hi Diana,

Sat back and thought about what Amanda had said and realised that I knew mri only showed larger deposits, ny gnyae is using it to try and determine how bad and how well spread the endo is and in/ on the outside of which organs. I realise it won't show it all but its an indicator of what to do. When we get the mri results we can take it from there as to drugs, surgery re excision or if it means hysterectomy as all the endo would have to be excised off all other organs at the same time and that may not be practical/possible. He is a really good surgeon though and I do have faith in him. f the hysterectomy isn't necessary then all well and good the less surgery the better. the kids angle is one though that is a completely different issue with a great many things to overcome before we could consider as I've already said. However if I can keep my uterus then it means that the idea isn't removed altogether and who know what time will bring.
I am very grateful to both of u for your help and information. I went out into the garden, sat n the lovely sunshin and realised life isnt so bad, I may be in pain but I have a brilliant partner and a roof over my head alot more than a lot of people have so be grateful for what I do rather than gripping about what I don't. Sorry to sound off and sound so whiny, I try to think about people worse off but when you're in loads of pain it isn 't always easy.
Should have gone away and thought before I'd typed. Sorry ladies :-(

 
Old 07-27-2008, 11:10 AM   #25
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Re: Scared/down as health gets worse and surgery may needed.

Don't apologize for a thing Elaine, how are we to know what to do or how to help if you don't share you fears, thoughts, emotions, what your doing to stay sane through all this, you never know who is reading your post and identifying with you, you could be helping someone else get through a rough patch in their lives too. I'm glad you've come to grips with what needs to be done for YOU. That's what's it's all about, what you want to do. The choice is in your hands, your the only one who can decide what to do with your body.

Appreciating the little things in life is a great attitude to have. Helps keep you sane through the rough days.

I sure hope they don't string you along till December goodness sake! I bet if a doctor was in this kind of pain they would of been in there right away. I can just imagine the agony of holding your water for that long, OMG'sh.
I bet your so glad to have that part over with.

It's good to have information that makes you contemplate all of your issues, making you think long and hard on what your options are and which direction to go in. Butrfligirl has raised some good questions with her experiences. Nothing wrong with thinking about all your options. Coming to terms with what you need to do, how you feel and what works for you is the main thing. I wish you only the best. Huggs once again to both you and Amanda. Diana

Last edited by drs; 07-27-2008 at 11:11 AM.

 
Old 07-28-2008, 04:19 AM   #26
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Re: Scared/down as health gets worse and surgery may needed.

Morning girls

Its brill weather here, hope you've got it too. I've had a couple of rough days, didn't sleep at all on saturday night so slept during sunday daytime, inspite of the heat. I'm wondering if ibs can give me back pain as I ate loads of things I shouldn't have done and had back pain so bad it was untrue. It was eased a bit by peppermint oil which seems to point to ibs.
Each time I bend I get a large pain go through my back much worse than normal, thinking of getting my reiki guy onto it as its more difficult to move than usual at the minute.
Still having burning when I go to the loo, but getting a bit easier so hope the huge amounts of water and cranberry juice may have warded a uti off.
Still gettting the pain after going but thats no surprise as they haven't done anything as yet.
I'm very appreciative of any1's comments about what I say, other peoples experiences are well worth listening to as they often have alternative ways of thinking about thinks or helping you. Your enzyme ideas for example . Reading their experiences can let you know you're not alone and also that there are other ways to treat conditions that your gynae may not have thought of which are always worth suggesting.
I do really appreciate Butfligirl's contribution and would love to hear from her again if she's reading, thanks and how are u?
Even though my back is rough today I'm having a good day emotionally, keeping up beat although having to take some counsellling issues which are really tough will get through them if I look at the bigger picture. Finding the sunshine does help, trying to take time out to sit outside and just look around and relax. Relaxing is the thing I find most difficult, apart from saying no to any1. Don't look after myself, rely on Dave to remind and nag me which isn't fair. Try to keep going even when I'm in terrific pain, sometimes I think to try and take my mind of the pain but giving me some me time really helps. Aso having the radio on in the background I've found is definitely a pick me up rather than just silence which I used to do have. Did have singing training at one point so tend to warble along and scare the local cats LOL
I didn't realise till very recently that my mental approach made a huge difference, bit naive Now I do, things r definitiely a bit better though I do struggle by the end of the evening if I'm really in pain to keep my chin up and not get down.
Hope you all have a brilliant day, take care and hugs to you both butfligirl and drs xx

 
Old 07-28-2008, 06:53 AM   #27
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Re: Scared/down as health gets worse and surgery may needed.

I will post more later on, I have some people coming here today. Just wanted to say that your on the right track to try and lift the spirits, it's proven that a healthy state of mind increases the immune system ability to fight things off. gotta run for now. Diana

 
Old 07-28-2008, 07:05 AM   #28
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Re: Scared/down as health gets worse and surgery may needed.

No probs Diana,

Hope you have a good day with you visitors. Thanks for the encouragement, it makes such a difference to have a positive mental attitude I can see now, just not always easy to keep it up, especially if you're on loads of pain. Back really awful, reiki guy can't come till tomorrow so will be moving v gingerly for the rest of the day.
Speak later

 
Old 07-28-2008, 07:52 AM   #29
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Re: Scared/down as health gets worse and surgery may needed.

Morning Ladies,

I am so glad to hear that you do have a doctor that is knowledgeable about endometriosis. I was very concerned about what he was trying to do. I still do not really see the point in the MRI, but it is certainly better than having another surgery. Sometimes these surgeries do more harm than good.

I worried for a long time about how I would get pregnant, and have a healthy baby with my chronic pain. I have severe abdominal pain from a hernia surgery that went badly. This is located in my upper abdominal area, where a "six pack" would be, if I had one! LOL I just had my third surgery to correct this. This pain controls so much in my life. You do not realize how much is connected to your ab muscles until something is wrong with them!

Here us an example of my ab pain: Coughing can be excrutiating, sneezing, bending, lifting, stretching, basically anything. I thought, how in the world would I carry a baby with this pain?? First I found a very good OB. She is actually the one who rushed this last surgery. I had developed a "weak area" in the abdominal wall, that turned into a volley ball sized hole within six months. She said that there was no way I could safely carry a baby that way.

So I needed another surgery, but what about the pain meds I take, and my chronic pain in general, my endo pain is on top of this other pain. As much as I long for a baby, I simply KNEW that I could not just "suffer" through it for 9 months, but I didn't want to potentially expose my baby to harmful drugs either.

My OB stated that while they do not recommend long-acting pain meds (oxycontin, which is what I take, fentayl patches, la morphine, ect., short-acting narcotics are considered safe and used more often than people think in pregnancy. She stated that it is much more dangerous to have a stressed out Mom due to severe pain, than it is to treat it. The only reason that long-acting meds are not recommended are because they are 24/7 and will cause physical dependance in the baby.

This is a very personal decision. I know that stopping my long-acting med, in my case oxycontin, is going to increase my pain. However, to me, it is more about tolerating the pain to have a chance to have a baby. I am going into it knowing that while my pain may not be as well controlled, there are other meds and things I can do to make in tolerable. It is worth it to me. My OB says that percocet is safe to take, and as long as I don't take it all the time, it is perfecty safe for the baby. There are other meds as well, this is just one I already take. She stated that there are many more women than you would think that have painful health problems, who also have children. She told me that this is not a rare scenerio, and that there are many things that can be done to keep me as pain-free as possible.

Again, this is a very personal decision. There is always going to be someone who says that you should suffer endlessly for your child, and not get pregnant at all if you need pain meds. That to me, is ridiculous. The great majority of doctors agree that it is MUCH more dangerous to have Mom is distress due to pain. I am not going to feel guilty about CP that is not my fault. I deserve to have the chance to have a child just like anyone else.

I know that nothing for us is easy.....LOL............ that's putting it lightly! Who knows if we can even get pregnant, I just don't want to lose my chance altogether.

I hope some of this is helpful to you. I wish you all the very best. This disease is monsterous and can make us feel so hopeless. I am simply advocating that you not give up hope right now. Hang in there my friend.. Let me know if I can be of help to you in any way!

Your Friend,

Amanda

 
Old 07-29-2008, 07:35 AM   #30
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Re: Scared/down as health gets worse and surgery may needed.

Hello Elaine and Amanda,
I had a very busy day yesterday, woke up at 3am and couldn't get back to sleep no matter how hard I tried. Elaine, I hope your reiki person shows up to help you soon. I've never had that done, don't know much about it. Glad it helps you with your back, I have had reflexology done before though, after one of my surgeries I just couldn't seem to recover from I had trouble walking upright, and I took only baby steps, I went to see this one lady that lived a couple of hours from here, my girlfriend recommended her to me, had to drink only water 24hrs prior to the appointment, (I could eat food though, just water to drink, no soda or coffee) I had two days in a row that I saw her, that first appoint was very painful, after she was done I went to my friends house and laid down, drank more water, the next morning I went Number 2 like I never have in my life! (Sorry if too much information but I have trouble in this area.) Had the next session then drove home from there, three days later I was like a totally different person, I even went back to work a couple of days after that, part time but at least I could do that much. The girlfriend that told me about this has had some major back spasms in the past. I have done her feet for her before, she was sure shocked to see me as she lives two hours away..lol, and her hubby learned where to massage and he does it for her when needed also. Her back will just totally go out all of a sudden. It takes about three days for her to be up and moving around after a message each day. So I do know that works good, hope the reiki does you some good Elaine.

Amanda, funny you should mention in your post, your hernia experience, after I had my Soccor Ball Size tumor which was endometriosis removed I broke a stitch by my belly button and I have a hernia there, the doc's said it would have to be a lot worse before they would do anything with it, it hasn't gotten any bigger yet and I had that surgery 11yrs ago, one year later they took out the same size tumor again, but did it vaginally, luck for me I already had two children so I had a total hyster. and haven't had too many problems since, at least no endo. growth. I remember my painful periods, I would have one decent week out of the month. Not Fun! Was having trouble bending over by the time I finally had the surgery, both times I got really big. It was growing all over the inside of me, it was called a chocolate tumor. The first time when they did the big incision I had to wear a belt for 6weeks to hold the stitches together because I'm short wasted and the cut was very long. I have scoliosis, have had it many yrs. and after surgery I realized that my back went out on that cold table, it was my sciatic nerve, I had to wait 6weeks before a chiropractor would even touch me because I had so many stitches. It was awful, took me three months to recover from that first one. The second one would of been easier but I had a bunch of things go wrong there too. Took another 3mos. to recover and the only way I did was to go to that reflexologist.

It's hard to remember everything when it happened so long ago, I do remember how painful it was though. I'm glad you can share your story as it hasn't been so long ago and is still very fresh in your mind and body. You may be able to help Elaine in that you are still going through it all. I hope everything works out for you. Don't let anyone tell you what you should or shouldn't do if it is your desire to do it. As in having your own child vs adoption. I'm sure you will do everything you can first if that is your wish. Blessings to you both, Diana

Last edited by drs; 07-29-2008 at 07:45 AM.

 
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