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Post by Karen on Jul 24, 2013 5:49:51 GMT -5
Welcome to the board! I'll try to write more later, but wanted to at least say hi.
What area are you from? We may have experience with a more experienced doc in your area. Beware of lupron without having a lap first. You really should have a diagnosis first prior to a drug as harsh as that.
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Post by nibletz on Jul 24, 2013 12:31:51 GMT -5
Hi and welcome Its good u came here theres so much information and helpful tips n advice n the girls are wonderful hun Youve been through alot and its good u want to fight it n have that mind set...once you have had surgery it tends to help put things in perspective n know what stage you are dealing with how bad it is in there xxx
It does suck that some docs are patronizing whatever you do dont let them push u into something you are not comfortable with take time to decide the right course of treatment. I was 14 and they started me on bcp up until 16/17 along with numerous other meds am now 25 n run out of options as the few that are left im not happy about but thats another story
Keep positive n read here alot feel free to ask any questions about anything and message me anytime xxx
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Post by hellsbells on Jul 24, 2013 14:51:14 GMT -5
Oh crikey, if a doc even mentions Lupron to a 15 yr old after 20 mins, run a mile!
In some ways I'm glad you know about it now, although not glad you're in pain, because you can make changes now that can improve your quality of life for the rest of your life. Please check out the diet and exercise board, loads of great information on how diet can reduce symptoms. Also there's the natural treatment board that was worth a good read.
Welcome and stick around!
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Post by Karen on Jul 24, 2013 21:15:36 GMT -5
I've heard about the no dairy and no bread diet before, but does it actually work? I don't have a lot of willpower when it comes to diets, and I'm in love with cheese. But as for exercising, I do that daily but my doctor told me to not work my abs at all because of my lower tummy being so sensitive, and I haven't, for the most part. and does acupuncture work? My doctor recommended it, and my mom said she'd be fine with taking me to her acupuncturist. The only thing is, I'm scared to death of needles. Yes! There are so many foods (and hormones/preservatives/additives) that exist in our modern diets that our bodies aren't quite sure what to do with, and they can send our immune systems on overdrive. Lots of auto-immune disorders, including endo, can be managed by diet. It may not undo any existing damage, but it can do wonders for mood, bloating, cramping, flow duration/quantity, etc. In addition, changing your diet can improve your hormone levels WITHOUT synthetic hormones. If you think you can find the willpower for one month to eliminate anything that might be offending, and then reintroduce to really see how you feel, check out the Whole30. Talk to your family, see if they'd support you with something like this. Things like physical therapy, acupuncture, herbs, etc. can also help. Acupuncture is actually really relaxing. The needles are the diameter of a strand of hair, so they don't feel like much. After 30 seconds at most, you don't even feel them. Don't get me wrong - I think it's really important to get a diagnosis so you know what's going on, but many of us often feel at the mercy of our doctors. There are lots of things we can do to improve the situation without their input. You might not be at that point yet, but just know that other options exist.
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Post by chibineko717 on Jul 25, 2013 11:35:49 GMT -5
Welcome! I'm sorry you are going through so much right now. I know that most doctors don't your symptoms like this very seriously because of your age. I went through the same, but was not diagnosed until I was 20 with an emergency surgery. I suggest getting an ultrasound. It may not show any endo, but it can show a large cyst. I had similar pain to you when my cyst ruptured.
Try looking at the Find a Doctor thread so that you can find someone who will take you seriously. I would not trust a doctor who wants to put you on Lupron before getting a lap(surgery) done first. I was on Lupron when I turned 20. It can help some people, but it did not help me since I had large cysts. Lupron cannot shrink large cysts. Lupron is an injection that goes into the back of your thigh muscle. It is a very large needle and is very painful. It puts you in a medical menopause, which is very awkward at such a young age. It can make mood swings worse and can sometimes give you brain fog.
I like acupuncture. It does not hurt and since you may not have a lot of scar tissue yet, it might help a lot. Diet can help, but it doesn't help everyone. I suggest trying Whole30 or the endo diet for a month and do an elimination test to see what is a trigger. Exercise helps too. I use a foam roller and it seems to release some of the tension I have.
I know waiting can be frustrating and painful. I'm going to tell you what helped me through the pain at school. I used a waist slimmer wrap. It gives a little pressure and keeps heat around the pain. I also keep a few skiing hand warmers with me. You just smack them a few times to warm up and then you have an instant mini heating pad that lasts about one school day. You can use the waist slimmer and hand warmers under your shirt so that no one can see them. If you use the hand warmers, move it every so often so you don't get a burn.
If you have any questions, feel free to ask.
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Post by Karen on Jul 25, 2013 12:02:53 GMT -5
I forgot to mention, we have several members in the Maryland / DC area. There's a thread in the general endo board about doctors in the area. You might be able to find a better doc from that thread.
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Post by nibletz on Jul 26, 2013 5:40:22 GMT -5
Hey its good you already eliminating unhealthy things from your diet hun thats great!!! Keep it up and hope u see differences xxx
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Post by willow82 on Aug 18, 2013 16:38:55 GMT -5
A lot of us in Maryland use Dr. Belizan 301-279-7622 at Shady Grove Hospital, he is amazing. Also very good if you're closer to Baltimore is Dr. Barreuto (410) 321-8452 with Mercy. I had my first Laproscopy with one of Barreuto's associates, Dr. Audlin, and it was a very thorough excision surgery for Endometriosis (aka the gold standard). Dr. Barreuto is very well respected, and is actually friends with Dr. Belizan Both are experts with Endometriosis, minimally invasive surgery, and provide full gynecological care. Both also accept most insurances. Both practices are also extremely nice, professional, and take their time. Both understand that unless they're in the OR with you that you are the best source for them in regards to understanding what is going on with your body. With Endometriosis it is really important to work with a doctor who specializes in endometriosis and minimally invasive surgery. Also Endometriosis cannot be formally diagnosed without a lap, and a lot of the medication treatment options are not likely to be very effective until the endometriosis lesions are removed. Endometriosis can make it's own hormones especially when it is in dense pockets, the pill, even lupron may barely help at all until after surgery! Both Dr. Belizan and Dr. Barreuto's practices are also very good at diagnosing endometriosis based on patient history and physical exam, they will not recommend surgery unless they are very certain that is what you have.
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