am I alone??

I was just diagnosed with Endometriosis back in Jan. of this year... I was on lupron for 4 months total and it worked for about 3 out of the 4 months... so my doctor had me stop taking it... and is now sending me to endocronologist (sp?) I have an appointment set for this coming monday... but I feel frustrated because I dont know if there will ever be something other then taking everything out that will take the pain away... I have taken pain meds and it doesnt work... I dont know where to go from here... I just want this to go away!!! Im only 25 and I dont have any children yet but would like to have one of my own at least one... Im sick of waking up in the middle of night in pain and cant do anything for it... is it ALWAYS like this??? I want to live... and with this pain its not allowing me to do that...:( what has everyone done that works for the pain? or helps at least a little bit?? Im willing to do anything that will make this go away!!! please let me know Im not alone in this!! :( THANK YOU THANK YOU for ANY help or suggestions you have!! ;)

[sammie02]

No, you are not alone! I was diagnosed with endometriosis for the first time in 2001, when I was a junior in high school... and was just diagnosed again a few months ago. I am 25 years old as well.
Have you thought about other avenues of relieving or stopping your pain? I never took (and will never take!) Lupron because of everything I have read about it... But there are other methods you should talk to your doctor about. I have had laparoscopic surgeries done both times, and the pain of endometriosis has been eliminated.(Although there were major complications after my surgery about a month ago... but that is very rare!) Keep in mind that this surgery is NOT a cure, but I can tell you that it has offered me relief.
Hope this helps!

[blueeyes_jd]

thank you soooooooooooooooooooooooooooooooooooooo much for letting me know that Im not ALONE!!! when I had surgery back in Jan. my doctor bruned off what she could but she told me that it is also on my nerve... so after surgery for a little while I didnt have pain... then the pain was back :( so then my doctor put me on the lupron shot... Im no longer taking it... but I was glad I did take it for the 3 months that it did work for me!! I was pain free for 3 months... then it stopped working so Im off of it now... I just would like something that will take the pain away... without having to loose everything... I just wish there was this magic pill or something that would take it all away... thanks again!

[blueeyes_jd]

oh yeah I dont know of any other avenues to try... Im new to this...

[justscore]

It's hard to get pain relief..........  My hubby would roll his eyes when we were 1st married every time I doubled over in pain.  One Dr told him the pain I was feeling was like child birth without having a bundle of joy at the end.  That was the last time my hubby rolled his eyes at my pain....LOL!
I tried Lupron, had several surgeries, etc.  The best I ever felt was during pregnancy and about a year after my twins were born.  After that, it was back to the almost daily pain.  I ended up having all my girly parts removed and it has made a world of difference.  My Endo was/is all on the outer areas of my uterus and ovaries, attached to my abdominal wall and the worst part was attached to my bowel.  I still have adhesion/scar tissue issues occasionally but NOT as bad as before.  Endo is very FRUSTRATING and PAINFUL and you are not alone.  I hope you find something that works for you.  I would buy the heat packs and sleep with them on and would take hot baths.  Liquid advil gels were my closest friend.  It didn't take away the pain but dulled it enough that I could function.

Hope you find answers soon!
Heidi

[blueeyes_jd]

THANK YOU  THANK YOU Heidi!!! Im so glad its not just me... because I felt like I was going crazy or something... my doctor would just look at me like she was stumped... and she told me that she couldnt do anything more for me... so... Im kind of between a rock and a hard place... Im not ready to have a baby yet... so I dont want to get all of my girl parts out  yet... but this pain... its unbareable sometimes... I do lay on the couch or in bed with a heating pad and that helps a little... but then I am stuck laying down ALL the time... but Im already laying down ALL the time... so yeah... thanks again!! ;)

[justscore]

I get the heat packs that wrap around w/velcro and they stay hot for about 8 hrs.  I think they are called ThermaCare (?).  

[shelly0775]

You're not alone here. There are plenty of us on the board that has endo and coping with endo and adhesion pain. Trying warm to hot shower during cramping times helps. I use this method alot being that I can't take pain meds. I will be having my fourth surgery for endo and adhesions in couple of weeks. Adhesions are causing lots of problems with my bladder. We are all here to help and support you in any way. Do not to give up hope! You have appointment with endocrinologist,is this a regular endocrinologist that you will be seeing or reproductive endocrinologist? If you are seeing reproductive endocrinologist, it can be a good thing. I see a reproductive endocrinologist.They like to try to preserve your girly parts and they are more helpful in trying other methods to help with pain. Some of them are more advance in laparoscopic surgery. We are all here to help you so don't give up and please let us know how it went on Monday.

[blueeyes_jd]

I think he is a reproductive endocrinologist, so that will be good!! thank you for your comments and support!! all of you!!! its nice to know that Im not alone... yet I feel bad that all of us have to go through this pain... I will let you all know what happens tomorrow... THANKS again!!!!  HUGS!!

[blueeyes_jd]

ok so I just got back from the doctors.... he told me that he didnt think that I had just endo because  I was on the lupron shot and my pain came back, he said it shouldnt have come back with being on that...UGH!!! IM SICK OF THIS!!!  going from one doctor to the next is just sooooooooooooooooooooooooo STUPID!!! I JUST WANT TO BE OUT OF PAIN is that SO HARD to do??? I guess so... so he put me on this birth control that is suppose to be stronger then the regualr ones... and said that if it didnt help with the pain then he suggested that I go to a pain specialist... so heres hoping that the new meds will work!!! cross your fingers for me!!! ;) oh yeah I was wondering if any of you have pain EVERYDAY ALL DAY!!!??? because thats how it is for me... :(

[sammie02]

I am so sorry that you had a rough time with your doctor's appointment this morning. I can tell you that I totally understand what you are going through! The first OBGYN that my PCP sent me to was terrible... he gave me the choice of taking Lupron, or having my ovaries removed. That was all he offered... blah. He was horrible! What part of the country do you live in? I have an absolutely amazing doctor that I was able to find, and he is now my OBGYN, and I swear by him!
Also, remember that you are not alone in this, and that we are all here to offer support and any suggestions that may be helpful... Let me know if I can offer any other info, and if you are in the same state as me, I would love to give you the name of my doctor!

[blueeyes_jd]

I live in Utah... I dont know what to think about my doctor... I have never been through this... so I dont know what to expect... I have no idea what to do... thanks for your help!! ;)

[blueeyes_jd]

so Im going to go see a new endocrnologist... not until aug. 4th but hopefully maybe she can shed some light... the last one I went to ended up giving me the same meds that my obgyn gave me and when I called and told them that my obgyn gave me the same meds and that she told me it wasnt a birth control and that it didnt work... his aid called me back and said that he felt like there was nothing that he could do for me and that I needed to go see a pain specialist... this is soooooooooooooooooooooooooooo frustrating... I just want to be OUT of pain... I dont know if this pain will ever go away with out taking all of my girl parts...

[skdranch]

not to TOTALLY discourage you, but this is my 5th time getting this ****! Like you said, it IS so hard to deal with, and husbands alot of the time, do not believe how bad you hurt! We have been together 25 years, and he is great, but he gets frustrated with this stuff too....keep a chin up!!!!! email me anytime! I have been thru alot with endo, you can ask me anything, and I will always be honest

[msmarlowe]

i know this is upseting...I am in the same boat however My insurance will not pay for Lurpon so I got it for one month and it's starting to wear off and the pain is coming back....I want a hysterectomy...i can't stand the pain anymore either. I go back to the doctor on the 17th....I going to beg for a hysterectomy.....I hope going to the speclist will help. I put lots pressure on my stomach when i'm hurting like laying on my stomach or pressing down for some reason that seems to help a little...The shower thing is also a good idea