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Re: About to give up.....to JosieFrom: josie (anonymous@obgyn.net)Fri May 25 17:10:07 2007
thanks steph!! keep me posted if that PT helps! At Fri, 25 May 2007, Stephanie wrote: > >Josie, its really weird, but my pain also increase around that same >time!! My mornings are always better then the afternoon/evenings! Well >my pelvic pain took me once to the ER! Weight gain, has also been a >problem w/me..Ive been on BC for a lil over one year and since i have NO >energy to excersice i cant loose the desired weight. Geeze, im telling >you, if its not one thing its another!!Im am glad to hear your gng to >see an endo specialist! That is the only way to get some GOOD help!! >Take Care.... Steph :) > >At Fri, 25 May 2007, josie wrote: >> >>Steph, I don't mind at all. I have been in this far less time than most >>of you. I can't imagine how some of you must feel going on for years >>dealing. I've been in the hospital for the pain and weight loss and had >>two laps. In the second one the doc took out the ovary with the >>endometrioma and basically said i should be just fine. (Even though the >>recovery nurse looked at my procedure pictures with me and said, "oh >>look there's a peritoneal lesion") I was hoping that would be the end of >>it, but the pain has been so bad with my periods and they are so heavy >>that I passed out in a store and was taken to the ER needlessly. Before >>this happened I had a Mirena IUD so I hadn't bled for about 4 years. The >>doc said my heavy bleeding must be from not bleeding for so long. Does >>this even make sense? Almost like I needed to make up for lost time? I >>though the IUD was supposed to keep my lining from building to regulate >>my bad cycles. I'm seeing an endo specialist next week to discuss the >>options. I also had some biopsies of my colon and intestine done this >>week, so hopefully will be cleared of any scary stuff this week. I just >>want my active life back!! Some afternoons I have to shuffle my feet >>because lifting them up causes lots of pain. Does your pain get worse >>at night? Mine starts to accelerate at about 3 or 4. Thanks for >>writing. This forum has been really helpful to me. Take care. >>At Fri, 25 May 2007, Stephanie wrote: >>> >>>I cant believe her doctor even mentioned that she coudl be bipolor! Im >>>glad theres been more research since then, but they still need MUCH more >>>to do! Thanks for all of your support! So, what stage of endo do u have? >>>How many laps? Hope u dnt ming the questions. Steph :) >>> >>>At Fri, 25 May 2007, josie wrote: >>>> >>>>Steph, no worries...I think that many regular OB's who may be great >>>>delivering babies just don't have the experience to handle the tough >>>>cases. That was my impression of mine. Their attitude is "I took it >>>>out so now you should be better." I don't think they realize that they >>>>make us feel like their isn't hope to improve, when the reality is that >>>>they don't have the skills to treat us. As far as the PT, I would not >>>>have imagined how much it would help until I went several times. I have >>>>backslid a little because I'm a week away from my period, but it did >>>>improve after months of feeling the same horrible pressure/pain. Maybe >>>>it can work for you too! A little relief goes a long way. It won't take >>>>away the endo, but it could relieve the spasms we can get from internal >>>>pain. By the way, my physical therapist went through endo diagnosis 15 >>>>years ago and her first doctor told her that she was probably bipolar! >>>>At Fri, 25 May 2007, Stephanie wrote: >>>>> >>>>>Hello Josie...well im still in pain, but at least my doctor decided to >>>>>refill my darvocet for now. So, that should help a lil. It is very sad >>>>>to leave the doctors office feeling like your crazy and that the pain is >>>>>all in your mind. For a while my doc was understanding, but she >>>>>probably just got tired of me complaining all the time. I have an appt >>>>>w/a new gyn and im gng to ask him about PT and maybe some pain >>>>>management. Thanks for your response, it helps a lot to hear from >>>>>others! Steph :) >>>>> >>>>>At Fri, 25 May 2007, josie wrote: >>>>>> >>>>>>I've been reading this thread and find it interesting how many women >>>>>>have gone through this same routine. At my follow up appointment after >>>>>>having my ovary removed, I told the doctor that I had the same level of >>>>>>pain as before. Instead of trying to come up with a solution to help, >>>>>>he said, "guess it's time for you to start pushing through the pain." I >>>>>>wanted to tell him that I wasn't delivering a baby, but had pelvic pain >>>>>>that put me at 20% capacity from my previous life and just wanted to get >>>>>>back to normal! I went home feeling very demoralized. Luckily the next >>>>>>day I had an appointment with a urologist who said that too many women >>>>>>with pelvic pain feel abandoned by doctors who stop trying to figure it >>>>>>out. I posted this info before, but he prescribed physical therapy to >>>>>>help with the muscles that have been in spasm from the organ pain and he >>>>>>prescribed B&O suppositories which are supposed to work directly on the >>>>>>pelvic floor. I am amazed at how much it has helped and while the >>>>>>problems are still there, it has improved (I feel like I'm at 70% now). >>>>>>Keep looking, ask for a referral to PT, ask for the suppositories (they >>>>>>work, even though it is just another gross thing to deal with!). I am >>>>>>just bummed I stuck with this other doctor, when I always left the >>>>>>appointment feeling like he was humoring me. What a difference to have >>>>>>caregivers who care!!! It may be like finding a needle in the haystack, >>>>>>but keep looking until you find someone you respect and that respects >>>>>>you. Hope you are feeling better.... >>>>>> >>>>>>At Fri, 25 May 2007, Cari wrote: >>>>>>> >>>>>>>I know, and it just enrages me. That plus the judgement. Wasn't pain >>>>>>>medicine developed to help those who need it? I have learned from my >>>>>>>experience that is for sure, no more do I judge others in pain... >>>>>>> >>>>>>>What I really wanted to say is that after my last lap, three weeks ago, >>>>>>>one of my docs came in to my hospital room and talked to me in detail >>>>>>>about the surgery and actually took the time to answer my dad's >>>>>>>questions (my mom passed away and my boyfriend could not be there so my >>>>>>>dad has become my surgery buddy) which was so cool. The jist of what he >>>>>>>said at one point is that our periods are not supposed to be >>>>>>>debilitating at all. Yes, cramping is normal but it should never be >>>>>>>severe and for too long docs wrote it off as part of being a woman. Now >>>>>>>that I know that, I feel better to have someone side with me for a >>>>>>>change. I used to have cramps and often they were pretty bad but a >>>>>>>couple of Advil always did the trick...with endo and adenomyosis, I find >>>>>>>Advil doesn't cut it at all. Doctors on the whole don't get that. A >>>>>>>few that focus on endo get it, but most just don't. Typical thinking is >>>>>>>that women are drama queens. >>>>>>> >>>>>>>I just wish the docs knew how humiliating this process can >>>>>>>be...constantly subjected to ultrasounds and exams of our most personal >>>>>>>private body parts, being probed and treated like pariahs for asking for >>>>>>>medicine...and how stigmatized pain meds have become. Where is the >>>>>>>compassion? I have put a career in archaeology on hold because of >>>>>>>pain... >>>>>>> >>>>>>>Sorry for the rant ladies, I am just never going to understand it >>>>>>>all...but maybe if we continue to speak up and create awareness, who >>>>>>>knows? >>>>>>> >>>>>>>-- >>>>>>>Cari >>>>>>> >>>>>>>At Thu, 24 May 2007, Stephanie wrote: >>>>>>>> >>>>>>>>Hey Cari, i totally agree that we need to do something to let the >>>>>>>>"world" know what kind of chronic pain we suffer and how much it affects >>>>>>>>our lifes! And its very true that everyone thinks that there just NORMAL >>>>>>>>cramps. It drives me NUTS to hear people tell me that. Like you said, >>>>>>>>only if they would see us at home, and how we spend our evenings crying >>>>>>>>and in bed, only then they would understand, that it isnt just NORMAL >>>>>>>>cramps! Sometimes, i explain to others that the pain is like the pain >>>>>>>>going into labor! Those are the types of cramps we deal with on a daily >>>>>>>>basis! Thanks for the words of encouragement, they mean a lot to me!! >>>>>>>>Steph :) >>>>>>>> >>>>>>>>At Thu, 24 May 2007, Cari wrote: >>>>>>>>> >>>>>>>>>Stehanie, >>>>>>>>> >>>>>>>>>No great advice but words of encouragement, I have been there. What >>>>>>>>>enrages me is that this is a chronic pain condition, no cure etc and we >>>>>>>>>are treated as though we are medication seeking addicts. Docs prescribe >>>>>>>>>ibuprofen like its candy saying that the pain is merely inflammation etc >>>>>>>>>and that makes me mad...once upon a time, a couple of Advil made my >>>>>>>>>cramps melt away. Now with endo and adenomyosis, my ovulation and >>>>>>>>>periods are horrific. Talk candidly with the doc, explain that taking >>>>>>>>>motrin is great but the pain becomes unbearable and incapacitating and >>>>>>>>>you want help. >>>>>>>>> >>>>>>>>>I often wonder, if we had some other "more tragic" (not my words, my >>>>>>>>>ex-doc's) disease that caused pain the doctors would bend over backwards >>>>>>>>>to help but too many doctors assume our cramps are not that hard to live >>>>>>>>>with. They should come to our homes and see us curled up in the fetal >>>>>>>>>position with pain tearing out our insides. I can't even tolerate my >>>>>>>>>boyfriend to touch me just to rub my back because it just sends pain >>>>>>>>>shockwaves thru me... >>>>>>>>> >>>>>>>>>I don't know what it will take to raise awareness...maybe if we keep >>>>>>>>>fighting... >>>>>>>>> >>>>>>>>>At Thu, 24 May 2007, Stephanie wrote: >>>>>>>>>> >>>>>>>>>>Hello everyone...well iv posted a few messages this week, due to this >>>>>>>>>>excrutiating pain episode i had on Monday night. Quick brief..last week >>>>>>>>>>i ovulated and my pelvic/back pain for some reason increased, since then >>>>>>>>>>iv been taking Darvocet every 4 hours, otherwise i cant even work. So, >>>>>>>>>>i called my gyn and asked for something stronger at least until this >>>>>>>>>>pain subsided a little. Well i get a call back on Wednesday from the >>>>>>>>>>nurse telling me that the doc would only prescribe me IBUPROFEN 600 mlg >>>>>>>>>>every 6 hours!! Later on in that day i called back to get a refill on my >>>>>>>>>>darvocet, since i only had about 3 left. Well the doctor DENIED it. >>>>>>>>>>When i asked why, the nurse just said that the doctor would only >>>>>>>>>>prescribe ibuprofen for now. It made me SO MAD! I cant believe she said >>>>>>>>>>that. After i had told her that my pain had INCREASE and not even >>>>>>>>>>Darvocet was helping and now, they wont even give me a refill! Im so >>>>>>>>>>upset, i just cried!! I have an appt next week w/a new gyn (who does >>>>>>>>>>excision on endo) but im just so worried, since i still have to wait >>>>>>>>>>till June 1st and no pain meds. Then i feel that they must think im >>>>>>>>>>some drug freak or something, i cant believe they cant understand how >>>>>>>>>>painful this can be!!! Sorry for the long story once again....I can >>>>>>>>>>totally understand all of the other woman who feel like giving up! I >>>>>>>>>>guess we get to a point we just dnt know what else to do!! Hope everyone >>>>>>>>>>else is having a better day!! :) Steph >>>>>>>
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