what is endro..endometriosis? ~ liz

Yes liz didn't know how to spell that LOL Stacy

i figured that's what you meant! i'm willing to bet it's your endo or ovaries pressing on some nerve they didn't used to. or there are new attachments, endo lesions, you didn't have before. the surgery could have allowed something to settle on a nerve causing your pain too.

i have endo and LOTS of severe pain problems. yrs ago doc's recommended a hystro but i have anxiety issues involving easy things like getting IV's and blood drawn. i followed your story last spring carefully and i almost caved but then you had problems and i knew i could not deal w/ all the medical things lol. for yrs i had my endo under decent control w/ mega doses of ibuprophen and birth control pills called jolessa (generic for seasonale). i had a light period 1-2 a yr and was almost pain free.

last summer my reg gyn dr left and i got a male dr who insisted i must have a period w/in 6 wks or there could be problems. well i could not convince him otherwise and i needed a new script for BC pills so i went along w/ it. ever since then all the severe pain is back w/ a vengence and it took several months of pills to stop getting a reg period. for those who don't know endo is spread thru out the body when it breaksdown and bleeds inside you, while it's attached to other organs. it forms long connections/attachments between organs, ligaments, muscles, nerves etc...and often these cause pain when pulling occurs. many women who have hystro and/or endo surgeries have worse pain than they did before, another reason i have dragged my feet getting it done.

are you on BC pills or hormones to control your ovaries? i would definitely call the doc, maybe this is a more common problem?? hope you find relief. i am again seriously considering surgery esp after this last yr, it's more about finding the right time in our schedules. keep us posted i always read how you are doing! ~ liz

Thanks Liz....I did not know most of this.....Yes I did have problems etc from the surgery and the endro. was the cause of most of it wrapped around the bowels and intestines and then my blood loss that made me get the transfusions.....no I am not on any b/c because the lowest dose and the nuvroring make me crazy....so the cysts and endro are probably growing like crazy.....I will call monday and see what they say......when I found out I couldn't take any form of b/c my options were getting the overies out or pain pills...I don't want to have to take pain pills but ANOTHER surgery is not exciting to me either actually it terrifies me....so I am scared to find out my options...I have done aleve, motrin heat etc etc but it doesn't relieve it at all nothing does it is all day long no matter what so I know something is going to have to happed thanks so much for your reply....Stacy

get your doctor to prescribe physical therapy sessions

I had my hyst when I was 22,and suffered for 20 years with the low back pain from it

Also have the cysts too Stace....still have the ovaries..the good thing is the pain is gone..about once every other month it comes back like it was my monthly

ONt did you find out why the back pain? This is so bad I don't sleep good at night there is no comfortable position....and I never had this before....so I know their is something up somewhere in my body....I truly do not want on pain meds because I would have to take them day and night cuz I have it day and night I am not sure as Glenda suggested exercises would help not sure? Just confused about it....Why do you not have it now? Do you know...Stacy

if it's endo you need hormone control or surgery nothing else will work. the ovaries still produce hormones and that drives the lesions inside you to breakdown and bleed, spreading the lesions even more. did the doc's try seasonale/jolessa? it is the lowest BC pill, i have a strong breast cancer background and this is the only pill i can take because it has such low estrogen.

you need to be EXTREMELY careful when exercising if you have endo. the lesions cause your insides to attach to each other and stretching, lifting etc...can cause internal injuries. there is a pro dancer on DWS who found out she had endo after a dance workout, can't remember her name but she also is into singing now. she hurt her rightside and it turned out to be endo had caused her appendix to get twisted up and was attached to something else. if you had endo on the bowels and intestines you know what kind of damage that does internally. i have a really bad area in my left hip, it's so painful i almost have a slight drag on that leg when walking. those lesions could be anywhere from the lungs down, thou most likely on the hip ligaments. my docs warned me to not do much stretching, yoga or tai chi (all exercise classes i take) on that leg because i may have intestines, an ovary, ligaments or veins entangled causing pain. i too do not want to take pain meds. i do not metabilize script pain meds well, they affect me much more than they should, so i stick to ibuprophen 800mg doses. but until last summer when i had a period, i was totally off everything for 2 yrs straight cuz i had the hormones completely suppressed. i had to laugh when you mentioned applying heat. i used to use 1-2 of those stick on therma care heat things a day, i used to say i should own their stock i spent sooo much $$ on their product :-(

you might check your library for books on endo i have several, i even joined the endo society to get info and into support groups manys yrs ago when i was first diagnosed. definitely call the doc...i'll be thinking about you ~ liz

Thanks again everyone....wow liz you are really up on this.....I guess my endro was really bad that is why instead of doing the little 3 cuts like they used to they had to to do the big cut because everything was all tangled up with it......well guess I better call her tomorrow and see what my options are....and I don't remember what the b/c pill was I took but she said it was the lowest they make...within to weeks I was SYBIL!! Same with the nuvo-ring......Yeah you gotta love those stick on heat things still use them....besides the back pain I really get sharp pains on my left lower side....and right.....like knife pains? Stacy