Re: About to give up.....to Josie
From: Cari (anonymous@obgyn.net)
Fri May 25 16:55:10 2007
Hi Josie,
I can't believe a doc told you that it was from not having a period for
so long, where do these physicians get their knowledge, the cracker jack
box? I did want to ask you about Mirena, it was suggested to me today
for treatment of my adenomyosis. I have never had an IUD before and I
am not sure about this so feedback would be great and very helpful!! :)
Also I relate to shuffling your legs/feet. I was dragging my left leg
for about a year until the endo on my uterine ligament was removed and
now that pain seems to be gone. I had it everywhere, my bowels, rectum,
bladder...you name it so I sympathize. I too want my life back, to be
the person I was at one time...when weekends came I was dying to get out
and enjoy the days and now I look at them as a chance to lay on the
couch. Also, like you my pain gets nasty towards the end of the day
maybe your body is fatigued from the day's activity? Who knows...but I
also have pain in the morning sometimes.
I hope the specialist helps you! It is a great thing to find a doc that
understands this stuff and actually treats it.
Take good care,
Cari
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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