|
Post by tarabobara17 on Jan 12, 2011 11:36:39 GMT -5
I am about to get my last shot of Lupron on the 24th of this month, which marks the end of a 6 month treatment. I feel like i wasted my time, money and sanity. I am starting the endo diet today, this week no more soy! Next week no more wheat and so on. I'm not sure what to talk to my doctor about, i am officially refusing any more hormonal treatments, they are very expensive and i have had NO sucess with any of them ( i don't know why my obgyn keeps trying them, we did implanon, progesterone and now lupron). The only thing I have ever found helpful was a lap. I didn't have pain for nearly 7 months after my lap, and that the longest i have gone without pelvic pain, bad periods and pain during sex. I have endo and cysts. I have a cyst rupture about 2x a year on average and have since i was 16. I hate them, and i hate endo. I'm finding myself an emotional reck, not only from the pain, but the meds, and the lack of support. My family doesn't really give me much support, so all i have is my fiance and you guys! There isn't anyone in my town that i know with endo, so none of my friends understand. I guess im just tired of being the sick kid. All i want is to be healthy! I don't think i did anything to deserve this. I feel like there aren't enough outlets for endo patients. My problem is either no one understands or they just don't really care because it's not fatal. I have had a very hard time venting lately (Lupron). Since i started getting my shots i can't cry, i don't know the cause. But i really feel like i just need a good cry to release all these pent up emotions. If i could just get rid of the pain, i would be doing much better. I wouldn't even mind the 2x a year cysts rupturing if i could just be pain free for a year. I need a break. I had a 2 month break when i first started Lupron, but it's back. It's always back. I do not know what stage endo i have, but i do know that i hate it regardless. I have found that meditating while listening to mantras has helped a tiny bit, but that mostly allows me to sleep peacefully. Does anyone have similar issues or advice? I feel like im going crazy. My emotions are up and down constantly, and no one understands me. Right not i'm currently on a heart monitor trying to resolve a heart problem i have had for some time now, which has proven to be a little extra stressful on me for the moment (not only is it itchy, but for the first time, i look like a sick person, so i have people staring at me and asking me a million questions). I guess im just a bit angry at these people because NOW they care and are supportive, but still ignore endo. I just wish there would be more endo awareness and support out there, let alone research. I would really like to see a cure in my lifetime, for my daughters sake, i'm so worried she will end up like me. There are 2 other family members of mine who had endo, it resulted in a total hysterectomy at around age 40. Ugh, sorry im just ranting and rambling now.
|
|
|
Post by pretty on Jan 12, 2011 12:18:07 GMT -5
Me too honey, wish there was a way to get people to be more supportive without sitting them down and subjecting them to our horrible tales of suffering.
I know it's hard to start the diet but of all the things I have tried it's the ONLY thing I can put my finger on and say, that helped a lot.
You need a doctor who can tell you more about your endo. Can you get the report from your lap and get your surgeon to talk you through it? it helped me a lot to get a play-by-play from my doc, then I knew WHERE the endo was and what she did with it. Helped me understand so much.
In your situation have you thought about writing a blog? you're so young and going through so much. Might help you 'get it out there' ?
Hoping the diet makes a huge difference soon. It will take longer to show a change since you're choosing to do it slowly, one thing at a time, so don't get discouraged if you don't feel anything for a while. For me the big ones were wheat and dairy. I didn't get any relief until I got rid of those two.
OK gotta get to work here. Best, Pretty
|
|
|
Post by tarabobara17 on Jan 12, 2011 12:35:56 GMT -5
I haven't thought about blogging, never given it a try, but hey at this point i will try anything! I have my pictures from my lap, and my doc explained a little bit, but not much. She did tell me all the did was cauterize what lesions she could and remove what cysts that were not dangerous to remove (i had a couple that were just too bit to remove). I guess I just feel like that wasn't enough, I feel like she could have done more, and by could have, i mean should have. When I see her on the 24th i'm going to ask her what my options are now, and if a lap could benefit me, surgery does scare me a little bit, but it's what helped the most. My last one was 4 years ago, and they didn't really take much time to do anything. I just feel a little helpless at the moment.
|
|
|
Post by pretty on Jan 12, 2011 12:41:42 GMT -5
Yeah. If you are going to go through it again, I suggest seeing a specialist who can excise ALL the endo. It's like, why go to all that trouble just to leave a bunch of it in there. Ask your doc which specialists she can refer you to. I know it's hard to ask a doc that since you have built a relationship, but seriously, all these hormones aren't working for you anyway. You may need to see someone else. If you are uncomfortable asking HER for a referral, could you ask your GP or another doc, so you don't have to go through it with your GYN? Remember it's your health and your GYN's feelings aren't relevant to your long term healing and health.... ok enough pretty lecturing for this morning!
|
|
|
Post by tarabobara17 on Jan 12, 2011 13:45:17 GMT -5
You all have given me the courage to ask to see a specialist, i will be asking on the 24th when i get my last shot! (thank god im so sick of lupron!)
|
|
|
Post by katiev on Jan 12, 2011 19:26:52 GMT -5
The diet wold be the first thing to try but what about accupuncture? Accupuncture has helped me sleep at night too. Definetly find a specialist. I was just thinking yesterday that there needs to be something here in Toronto to help girls & women but could start something like that? I'm thinking I might. Just have to research it I guess. I hope you find some relief.
|
|
|
Post by tarabobara17 on Jan 14, 2011 12:26:38 GMT -5
Do you have any advice on home remedies for cramps and stabbing pains? I had the hardest time sleeping last night, i have a stabbing pain where in going to guess my right ovary is, it's killing me. I do not take Tylenol or ibuprofen anymore, as they do nothing. i just need to be able to sleep at night, and relax when i get home from work. I'm out of ideas. I go to my doc. in a week, but i want to have some relief until then.
|
|
|
Post by Karen on Jan 14, 2011 13:12:28 GMT -5
Do you still have your appendix? I thought my right ovary was an issue, but it turns out an adhered appendix was pissed off & causing a ton of pain. If it continues, please see a doc. An adhered appendix may not show the 'typical' appendix symptoms so if it persists, please consider getting it check out sooner. If it's typical pain that you've had before, though, heating pads might help. There are also topical creams (similar to bio-freeze) that are sold to help with cramps.
|
|
|
Post by tarabobara17 on Jan 14, 2011 13:47:23 GMT -5
i do still have my appendix. it's not like cyst rupture pain, i've had that many times, it's different. i have had stabbing pains before, this one just seems to be different. it's mostly on my right side, sometimes a bit on the left, but not nearly as bad the right side. i think the pain on the left is just cramps. Cramps haven't stopped since it started last night. Stabbing pain is a little on and off, mostly on.
|
|
|
Post by katiev on Jan 15, 2011 11:22:09 GMT -5
I used ot get that before I started the diet. I used to just crunch up in the fetal position and hope for the best. I can only lay on one side. Maybe try and see what side feels best for you. Heating pad or hot water bottle is a must. I put one on my back and one on my tummy. Certain foods make the pain worse. Try also putting your legs/kness on top of a pillow. Sometimes that takes the strain away somehow.
|
|
|
Post by Karen on Jan 15, 2011 11:28:25 GMT -5
I agree with Katie, if you're one that's sensitive to foods, it can make any cramps worse. Any chance you loaded up on a lot of gluten or dairy the past few days?
|
|
|
Post by tarabobara17 on Jan 16, 2011 20:23:33 GMT -5
im working on changing my diet, but i have been struggling. I found that all the food in my cupboards have dairy and wheat :s i have been craving milk like crazy, so i drank a glass or 2 each day for a couple days. no milk today and little wheat as possible and still pain. today has been the worse. i'm calling my gp tomorrow to get some pain meds till friday when i see him. im miserable, my 2 yr old is mad at mommy today, ive been glued to my couch today
|
|
|
Post by Karen on Jan 16, 2011 20:35:10 GMT -5
Unfortunately, the endo diet isn't something you can try for a day or two and expect relief, it's more of a long-term kind of thing. It can take some getting used to, and will require a lot of cooking from scratch, but it's completely do-able, as many of us can contest!
In the meantime, though, I hope you're able to get some relief!
|
|
|
Post by KSA on Jan 16, 2011 22:40:39 GMT -5
Your right side? Galbladder pain is right side it also gets worse at night. What sort of foods are you eating? The endo diet takes time. When you are eating fatty starches this can make the pain worse for endo and galbladder pain. With what I have went thru the last few months anytime someone says right side pain I will immedietly think galbladder that little organ can cause a lot of issues and for whatever reason seems like it hits us endo girls. 2 members me and 2 friends of mine all have endo and galbladder issues. Diet can help with that also but if it is not working right or you have galstones getting it out is best. Good Luck keep us posted please on how you feel and what gp says.
|
|
|
Post by pretty on Jan 18, 2011 16:26:11 GMT -5
Yeah honey, I second Karen's post: You really do need to stick with the diet if you expect to feel any relief at all. I promise it will work, but you have to ELIMINATE FOODS before you can re-introduce them. This means don't eat ANY wheat or dairy for a month or two. Then, after you have successfully eliminated it TOTALLY, you will know if that food is the 'culprit' or not... But seriously, not eating wheat for one day and then eating it the next will not help you at all.... Let the awful pain be your motivator. good luck.
|
|