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Re: About to give up.....to Cari
From: Cari (anonymous@obgyn.net)
Fri May 25 17:40:33 2007
Thanks so so much for the info on Mirena. I will have my hysterectomy
next year but it was suggested as an option in the mean time. I had a
lap three weeks ago so I want to give it a cycle or two to really know
where my pain is at right now.
Thank you, thank you!! Sometimes I think we are all our best sources of
info...
Cari
At Fri, 25 May 2007, josie wrote:
>
>Hey Cari...I loved the Mirena...I got it from having really weird
>frequent and painful periods (maybe that was endo starting?) After a few
>months of annoying breakthrough bleeding (now i can't believe i thought
>that was tough! hahaha) I almost stopped getting my periods. It was
>just a slight bit crampy going in, but not bad. After that I was
>totally unaware I had it. Some months it was an hour of bleeding and
>some it might be two days. My cramps were pretty light also. I think I
>had one box of tampax for over three years!! I am going to ask for it
>again when I see the specialist because it was so convenient and I
>didn't have bad side effects. As soon as they took it out when they
>thought I had a uterine infection the bad periods came back with a
>vengeance. Hope this helps...
>At Fri, 25 May 2007, Cari wrote:
>>
>>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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