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Post by Karen on Apr 4, 2011 20:13:57 GMT -5
Yes, you can be scared of a lap, and yes, some of us haven't gotten full relief, but the way I see it, a lap is more for answers than anything. A good friend of mine has endo and was trying to have a baby and they eventually did a lap and found that BOTH of her tubes were completely blocked. I'm not saying that's what's going on with you at all, but a lap can shed some light on things that were a guess before. I'm not trying to push a lap, and lord knows we don't enjoy them, but they do provide us with much needed info!
Think of it this way - no one likes bringing their car in for repairs. It often takes longer than it should, costs way more than we'd like, and might not completely fix the problem in the long run. But, those repairs will keep things running smoother for longer and the next time things fall apart, you have a much better idea of what it is/isn't based on symptoms. And that, my friends, is my analogy for the day!
I guess what I'm suggesting is not to rule out anything because of fear. I'd think the fear of not really knowing what's going on would be worse. But that's just me.
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Post by Karen on Apr 5, 2011 21:16:41 GMT -5
First off, I'm AMAZED that you were able to get in so quickly! And second, wow, that he could SEE it? Yikes! Wow. Fingers crossed the BC works for you again and helps shrink that down! And as for option 1, do you at least know the name of it? Some of the girls on here might be on it or have info on it, might have some info to share on it!
I give you props for digging into things further!
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Post by gemstone on Apr 6, 2011 6:46:33 GMT -5
My doctor could see and feel the ball of endo in my pouch of douglas too! Although I am always in a hell of a lot of pain, so it's great you're not always in pain  My doc has said that I may have to have a temporary bag depending on what happens when they get in there and take a look around. I'm really glad you're moving forward with this. Are you going to try the endo diet now? I have found it has helped sooooo much with pain and symptoms. (oh, it totally sucks you missed Bon Jovi!) |
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Post by JC on Apr 6, 2011 6:59:58 GMT -5
"He said without a doubt and this is very very rare that the endo has eaten into my vagina."
OMFG HOLY sh*t. This has to be the source of all your problems! If it went into your vagina then it must be around your urethra and everything! WOW chica, just wow!
As far as the aromatase inhibitor is mostly used as a breast cancer drug. Any word ending in -ase is an enzyme. So this drug blocks an important enzyme that helps make estrogen from other precursor molecules. So in short, it's going to lower your estrogen levels. I'm kinda fuzzy on whether it has such a drastic effect like lupron and going into menopause but I think I might be able to find some research articles on it and get back to you. I also think when your doctor said it wasn't approved by the FDA, I don't think he meant the drug itself isn't approved, it just hasn't been approved yet for the treatment of endometriosis. This drug is probably in its last trial stage for approval which means it has been at least approved to be safe to use on human test subjects. From what I understand though, this medication is already approved for breast cancer treatment, just not for endometriosis treatment yet.
A member "Italialynn" I believe is using an aromatase inhibitor right now? Maybe I can PM her and ask her to give you some perspective on what it's like to take it.
It really sounds like you have tried your absolute best to gather as much information as possible to make these decisions. Hopefully you can wake up today clear-headed and feel good about your choices in what to do with your endo treatment. I really like this doctor. It's a great sign when they spend so much time with you and discuss your options.
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Post by JC on Apr 6, 2011 7:45:37 GMT -5
Ok correction, Talia said she hasn't started the aromatase inhibitor yet but is supposed to soon. She said her sister was on it and loved it. I'll let Talia chime in when she gets a chance... BTW I ran across an article that gave a case study on aromatase inhibitors specifically used on two women with endo and urinary issues. One of them made a drastic improvement and the other didn't have much change. I'm still digging deeper to find more info on this medication. It seems to be in very early stages of testing on treating endo so there's not much info out there. But the good news is that I haven't read anything bad about it yet! |
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Post by italialynn on Apr 6, 2011 8:22:56 GMT -5
Hiiii ladies.
Yes, my doctor is putting me on Femara (the aromatase inhibitor) with a progestin-only pill for 6 months after surgery. It's not anything like Lupron, which pretty much shuts down ALL your hormones - it's a daily pill that you take like birth control and it 'stops' the production of estrogen, only. It's been used for breast cancer patients for years and doctors have been starting to use it for endo for the past few years with great results.
My sister has lung endo and it was the only thing that stopped the monthly bleeding from her lungs without surgery. She is VERY SENSITIVE to any exogenous hormones and had no side effects at all. She absolute loved it and is most likely going on another round of it soon.
I'm willing to try anything at this point. Well, anything except Lurpon, that is.
I'm glad you liked the doctor. I must say though, I'm shocked he doesn't think surgery is an option? I guess since you don't have daily pain is his reasoning, but still interesting nonetheless. He sounds great, but in your case with how extensive your endo seems to be, I'd likely get a second opinion from an endo specialist. Maybe send your records to the CEC or something? Just don't want to "leave it alone" and have it cause irrepairable damage to your urethra or bladder.
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Post by chicagogal2 on Apr 6, 2011 8:32:52 GMT -5
I'm going to do the pill, I feel like I need to do something today. I guess I can switch to this other thing later if I want once I know more about it. I believe as long as I treat it with the pill or whatever it won't grow or do further damage so I shouldn't have to worry about future issues. I did extremely well on the pill before, no issues at all other than some spotting here and there. He said since I responded so well to that I should probably stick with what I know works. I am interested in learning more about this other inhibitor though.
What is the CEC and what would they do with my records?
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Post by JC on Apr 6, 2011 8:43:14 GMT -5
If the pill works well for you again then hopefully you wont have to try anything else! I sure hope you can go back to being pain free again.
I'm interested in this inhibitor too. It sounds promising at least. So far it's better than lupron!
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Post by pretty on Apr 6, 2011 11:59:14 GMT -5
Wow Nicole! results! sort of, right? I bet you feel better at least having all your stuff totally validated by this guy! I'm praying you are successful in this new treatment! way to go, detective Chica! P |
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Post by Karen on Apr 6, 2011 18:40:08 GMT -5
I moved your posts over to the Femara post to keep all the info together!
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Post by chan84 on Apr 7, 2011 7:54:26 GMT -5
Ok the test I had done isnt the FSH, however it does test the ovary reserve etc....... The test I got done is called an anti mullerian assay hormone test. Now, to be totally honest I dont understand the difference, however, I do know that we can get tested for FSH, but my surgeon specifically wanted me to get this one.
Now in regards to surgery.......... I trust my surgeon and last week I said this to him, "if we leave the right ovary there and we leave my bowel tell me honestly what will happen"...... and he replied, "in my honest opinion, and in my many many many years of experience with endo patients, I am worried if we leave your ovary there in the state that it is in (AWFUL) it will cause other issues for your insides and possibly make the left one worse....... I am also worried that if we leave the part of your bowel that has the endo in you, that u will end up doing more damage and you will end up with a bowel leak therefore a bag"......... I trust him. I too, am surprised that your surgeon hasnt removed the endo if it is causing you that much grief......... However in saying that, well Im headed for my 6th f**kin surgery (excuse the swearing), and Iv been told 23% chance of getting pregnant in the next 2 years.......... So u know what............. WHO f**kIN KNOWS WHAT THE RIGHT AND WRONG THING OPTION IS!!!!!!!!!
And youre prob like me at the moment thinking heaps of women get told stuff like they will never be able to have kids and then all of a sudden years go by and then they have had 2 children, which leaves us thinking maybe I wont stress myself out too much. But then on the flip side you dont wanna risk any time in case we really dont have a chance later in life.
How does IVF work over there? Meaning, how much does it cost to freeze eggs etc?
YOu know what, sometimes I write the kind of stuff im writing and then I get really ticked off coz I think, not in a million years did I ever think my life would be like this. I never ever thought that I would potentially be calling an IVF clinic and making an appointment. Again, excuse my swearing, but this is all so f**ked!
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Post by chan84 on Apr 7, 2011 8:18:12 GMT -5
By the way girls, I am still yet to do the endo diet. And I asked my surgeon about this last week...........He said, "I dont believe in cutting big foods out of your diet......ie- wheat, meat etc.......but I do believe in putting extras into your body.....For example chanel-if you were to eat Mc Donalds which contains free radicals etc, enjoy the lovely tasting burger and fries, BUT then follow it thru with a carrot juice coz carrot juice over-rides the free radicals, so its like u never had the bad stuff.......or have anti-oxidants sources."
Now for me girls, his thoughts are much better for me coz I LOVE MACCAS and wheat and bread and meat and dairy!!!!!!!!!
However, if it has worked for a lot of you girls well good on the ENDO diet. I guess chicago if youre freakin out like I have been, try the carrot juice thing........
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Post by cherry on Apr 7, 2011 9:04:32 GMT -5
Yeah there aren't many docs who heavily push a good diet I have found. What he said is preferable but he's missing the biggest issue many of us face with endo and diet... it's the allergies and inflammation we develop as a result and so makes certain foods not worth eating. There are things I don't touch because they have such a direct and immediate effect on my digestive system and lady parts. Like total agony. But at the same time I don't follow any particular diet, I follow them all to a point as I lose weight too easily and yet want to feed my body rather than my cravings. I have a good balance I think, occasionally slip up and regret it. I'm not one to push the dietary changes because you have to do things as and when you feel ready and able (who wants to drop the comfort foods when you need comfort most right?!) BUT that's just another viewpoint to consider. He's talking pretty generally about food concerns that the general public have, and missing the fact that endo is automimmune so as a result, we're pretty sensitive and also the hormones in some foods mess some of us ladies up badly. Best of luck striking a balance |
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Post by cherry on Apr 7, 2011 9:05:24 GMT -5
Oh vitamin C saved my life ladies. I take it by the bucketload.
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Post by JC on Apr 7, 2011 12:36:48 GMT -5
Chica, it sounds like you have really thought this through and have made a decision. I wish you the best of luck moving on from this difficult 1.5 years of dealing with endo.
Keep us updated with your second round with the pill!
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My doc has said that I may have to have a temporary bag depending on what happens when they get in there and take a look around. I'm really glad you're moving forward with this. 
