|
|
Post by chicagogal2 on Apr 3, 2011 12:51:35 GMT -5
Today is day 2 of a very bad period. I have been doing alot of thinking and I feel like I'm coming to the end of my rope. I was doing wonderful being on the BCP - sure I had some weight gain and was a little moody but looking back I'd take that in a heartbeat vs. how I feel right now this second. As you all know I really want a baby. I have given it a good shot on the natural side. I am growing more and more concerned with the pain I have during day 1 and 2 of my periods. The muscle ache/pain around my right butt is awful. The severe difficulty getting the urine out during these days sends me into tears of frustration every time. I have doctors telling me a lap isn't a good idea, adhesions are bad, leave it alone. The MRI at the end of the year shows the size of the endo hasn't really changed in size from my original diagnosis by lap in 2002. They never removed any of the endo at that time. I'm scared reading the posts here about bowel issues and some ladies almost dying from leaving their endo untouched. I worry that I have endo on my bladder and that i could be doing damage to my bladder by leaving things alone. Part of me says look into this further and treat it by surgery, the other part of me says leave it alone. Do I want to go back on the pill and forget about a family? Today, yes, tomorrow not so sure. I feel like I need to unload my feelings here. Last night was horrible. I had to take multiple baths to try to remotely feel better. Took about 8 total advil liquigels thru the day. Woke up at 3 30am in pain - took another bath, iced my lower back ( somehow that makes me feel better ) and watched tv for awhile. Broke down and took a tramadol and went to bed. I guess that was the best thing I did because I felt much better after that and was able to sleep peacefully from 4 30am - 9 30am. Now I'm back to some pain and debating if I want to deal with more tramadol brain fog, ringing in my ears from it and the dry throat it always gives me. I'm just so torn what I want to do. Maybe I'll try the PPT for a little bit and see if that can help me at all. If not, I think I'll need to make a decision to go back on the pill and forget about a family for good. To me, right now, it's not worth it with how I'm suffering right now.
I'm just do down and disapointed. thanks for listening.
|
|
|
|
Post by KSA on Apr 3, 2011 13:15:09 GMT -5
Sorry you feel so bad. If you have not had any of it removed I suggest going forward with a doctor that can do that. If you are taking that much medication to control the pain your endo is obviously making life difficult and treating what you can is my suggestion. Bowel and bladder endo can be removed and you still may have a chance to have a family my sister had endo and has 3 girls. I have 1. You have to be very active with your doctors and ask for what you need to see where the endo is. In the meantime have you tried any sort of massage therapy? Tummy massage and back can help. I have a wonderful massage therapist that will do both. Find some sort of relief and it helps so much with stress and it sounds that you are very stressed out. Vent here as you need some sort of outlet...
|
|
|
|
Post by Karen on Apr 3, 2011 13:42:55 GMT -5
Feeling like crap sucks, period. It's impossible to feel upbeat or optimistic when you feel that awful!! I think a lot of us can understand your frustration and how you're feeling.
I know you just want some compassion right now, but when you're out of the woods and feeling a bit better in a few days, please take that complete and utter frustration and turn it into ACTION, girl! As we all know, pelvic pain and period pain are NOT normal, and you deserve options to treat it. PPT might certainly help with some symptoms, and I know I swear up and down about it, but don't put all your eggs in one basket! Consider getting a second opinion from an endo specialist to see what some other options are. Asking around for options doesn't mean you need to take immediate action, but it at least means you can make an informed decision!!
In the meantime, I hope the worst of it passes soon for you!! Hugs!!!
|
|
|
|
Post by Karen on Apr 3, 2011 14:09:50 GMT -5
Yes, some of those things CAN sound really scary, but at the end of the day, YOU make your health care decisions, not some doctor! Who knows - they could also suggest something that isn't as scary that could really, really benefit you! The good endo specialists will listen to your needs and tailor a plan to fit YOU and your end goals. It can be incredibly scary to try to wrap your head around all this, but the more you know and the more options you have, the more power you have over endo. It doesn't run your life, it should be running from you! Now kick some endo ass, girl!!! (Too much?  I hope you get into that PPT place, they seem fab. And remember - I'm sure they work with a LOT of people with similar experiences to yours, and allllllllll those people will tell everyone they know about the good doctors they've seen. I'd be willing to bet than once you start working with them, they'd be able to suggest a doc or two that might be just what you need. It's so much easier to find a good doc through word of mouth. In the meantime, get some rest and I hope you wake up feeling better tomorrow! |
|
|
|
Post by JC on Apr 3, 2011 14:59:59 GMT -5
Hey girlie! Things just aren't quite working out for you! I'm sorry it's so hard right now. If you have to go back on BCP, you don't have to do it forever. You can try again. I really don't want to see you give up on your dreams of having a family.
I can understand the anxiety behind seeing another specialist. I hate the feeling of seeing a new doctor. I get the "he/she wont care," or "they'll just make me try ___ and I don't want to." I totally feel ya on that one. But like Karen said, at the end of the day the only person that can truly make a decision is YOU. It gets so overwhelming at times. You have one person saying this, then another person saying that blah blah blah... It's frustrating! But you have the ultimate decision in the end on what to do. Maybe gathering another opinion might shed some options on your situation that you didn't think of.
Try to get some rest and sleep on it for a little while before making any decisions. Sometimes a good night's sleep is all you need to get your mind clear again. Then you can make a good decision and feel good about it with no regrets. And as always, we're here for ya!
|
|
|
|
Post by gemstone on Apr 3, 2011 15:11:02 GMT -5
I don't have much to offer in the way of advice when it comes to surgery as I am yet to have any, but I do understand the pain during your period. I get horrendous pain for around three days, get very little sleep and find that most painkillers barely take the edge off, so I can totally relate. My butt pain is constant and awful during my period but I know that there is endo in my bowel that the doctor could see when he did an internal exam. My periods are also regular as clockwork and I after those three days the bleeding really slows up, so I get that too. I think Karen has said everything and I don't want to offer advice about things I don't fully understand and haven't experienced, but you know you can always vent and we're here for you  |
|
|
|
Post by Shannon Elizabeth on Apr 3, 2011 15:44:22 GMT -5
Hey girl,
I'm at a crossroads too and I have an appointment with a new doctor May 6th and I'm absolutely terrified to go. I'm afraid of a Lupron pusher (which I KNOW I will not be able to tollerate Lupron with the way I've handled the Depo so poorly). And I'm afraid of any tests or exams she will want to do because I've become so tender down there I can't even use a slim tampon for my period which I've had 6 times in 2 months now. Something great about being here is that at least we an all relate and support one another, even if no one else in our lives can understand. Don't be ashamed of having to take your pain medicine either. I used to take 100 ibuprofen in 5 days before my doctor started giving me 'scripts for the pain. (not advising that course, but I would be vomiting and pass out otherwise) This disease, as doctor Cook wrote in his article, can be more painful than advanced Cancer at times.
Hang in there!!!! *hugs*
|
|
|
|
Post by JC on Apr 4, 2011 11:24:01 GMT -5
Hey chica, I posted in your other thread about laps giving you symptom relief. I just wanted to also mention that the best surgical success is when the endo is excised off and not lasered off. If you can find a doctor that does excision surgery that would be best.
Also check out the thread titled "questions to ask your doc before having a lap" in the surgical section. That thread saved my ass before I had my lap!
|
|
|
|
Post by KSA on Apr 4, 2011 11:43:04 GMT -5
I would tell you that when I found out of my endo I went every where I could for answer. I know you are in Chicago and a specialist may not be in your area however NYC is a not that far. The questions to ask you doc is a perfect thread for you to read. Get all the knowledge and options you can. If Lupron is being pushed and you do not agree with it you have to just say no. Excision has the highest succes rate but you may have to travel to find a doc to do it. Dr. Jones in Columbus is awesome and was trained by the guru of endo Dr. Redwine and you are a plane ride away to NYC. When I went doctor hunting for answers I did it much like a interview. I would def suggest reading the thread Jenaya posted. When I talked to the docs that specialized in endo I left with so much confidence and it gave me peace to know that we have options not just Lupron. Its everyone's own choice as what they decide it hard to do get as much information as you can if you choose surgery educate yourself about the process and the doctors ability. They are up front usually if they can not help you then wont say they know how to do excision if they have not been trained. No every doc does excision you have to search for them. Good Luck~Head up girly you will make the right decision. We are here for support no matter what you decide.
|
|
|
|
Post by JC on Apr 4, 2011 11:47:10 GMT -5
Also try googling "women's health clinics" or "women's surgical centers" in your area. Sometimes you find good stuff like that.
|
|
|
|
Post by pretty on Apr 4, 2011 12:02:18 GMT -5
|
|
|
|
Post by JC on Apr 4, 2011 12:06:48 GMT -5
I knew those threads would scare you off. Just keep the option open about having a lap. You never know, they could find the source of all your problems.
|
|
|
|
Post by chicagogal2 on Apr 4, 2011 12:22:01 GMT -5
Thanks you guys! Wouldn't I have the urinary issues when I'm not having a period if it were tied to the diet thing?
I'm anxious to see what the dr. says tomorrow. I'm totally scared by the dye test - the nurse that just called seemed annoyed that I said I didn't want to do that test. Oh well, my body and I'm going to take this at my own pace.....I'm scared but want answers so it's 1 day at a time for now. I guess being that I am still hurting, thinking of another test that will hurt just freaks me out even more! Also for those who had the laps and then pain after, if I get on the pelvic physical therapy right after wouldn't that break up any scar tissue/adhesions and prevent that type of new pain?
|
|
|
|
Post by pretty on Apr 4, 2011 12:29:35 GMT -5
For me, no, the hormone changes of my period were what triggered the responses. I could not poop or pee without hellish pains. Diet changes took ALL the issues away totally. I've been telling you this for months. Just try it please, you sound so desperate, I can't understand why you wouldn't want to try it. But, everyone makes their own choices. The HSG is hugely informative, but you need to calm down about it. If I were you, I'd see a specialist and ask about options and write them all down, meanwhile I'd give the endo diet a serious go, for a month, giving myself a month to calm down and consider carefully whether I wanted a surgery. If you have surgery, it should be excision with a specialist. You should begin PPT asap and do discuss wheat and inflammation with your ND and PPT, both of mine were very positive that my avoiding wheat and dairy (and soy) had really put me ahead of my symptoms so that they both felt like they weren't wasting time treating me while I was working against them with diet choices. Give yourself a break, and do one thing at a time. Hope you feel better soon, Pretty |
|
|
|
Post by pretty on Apr 4, 2011 12:56:33 GMT -5
me too, girl. Sucks you feel so bad! hang in there....
|
|
