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Re: Chronic pain - need answers!
From: Sherry (anonymous@obgyn.net)
Tue May 30 21:41:36 2006
Hi Lora, thanks for responding. I'm glad that the physical therapy is
helping you. If nothing else turns out I am going to mention that and
see what my doctor says. I went today for the first time to a new gyn
and he seems to be thorough to a certain extent but of course is sending
me to a gastro doctor so I'll have to go through all of that again. He's
running a bunch of blood work including that CA-125 test which I was
told by my previous GP, quiet awhile ago before i found a new one that I
could not have that test done for whatever reason. Anyhow, I was
wondering what types of pain were/are you having. Did they diagnose you
as having endo at some point? Did you get the pulling/tearing feeling,
more like a spasm effect and also the cutting which basically sends you
to your knees? Did you have any problems with your periods at all. I
know for me, my periods drag on for 10 days or so, not heavy but they
just drag on and intercourse is extremely painful for me. So, why the
gastro doctor who knows, I guess they have to go through the motions but
is also doing a couple of other tests so we'll see what happens. I'm
sure a lap will be down the road a bit but I'm praying they find
something that is causing the pain. I have a lot of it near my belly
button, he could not press at all during the exam this morning in that
area. Did you have any of that type of pain?
Thanks again for responding and let me know when you get a chance.
Sherry
At Tue, 30 May 2006, Lora wrote:
>
>I started getting cronic pelvic pain after my last lap in Oct my gyno
>decided really didn't think it was endo so he decided to send me to a
>physical therapy specialist in pelvic pain. Here is the website of the
>place she trained at http://www.jmweissmd.com/index.html. Although the
>progress as been slow which I am told is normal, I have seen a huge
>improvement from 4 months ago. I am rarely in that much pain and when I
>am I not feel it is because I am sressed and my response is to clench my
>stomach muscales. They say this started because Is in pain from endo
>and I trained my muscules to tighten when they felt pain so when i was
>in pain all the time my muscales were always tightened so went the pain
>went away my muscales stayed tightened. This therapist does massage as
>a means to loosening the muscales. The website above also trains PTs in
>just Pelvic pain, so I am sure you could call them and find someone they
>have trained in your area. Good luck and let me know if you have any
>questions and you can always email me.
>Lora
>
>At Mon, 29 May 2006, Sherry wrote:
>>
>>Hi Suzie and Inny:
>>
>>Thank you both for your input on the pain and what you both are going
>>through. It does help to know that there are others as you said that
>>are in the same debilitating pain!
>>
>>Suzie: I was wondering about what the doctor had said that maybe it is
>>attacking some of the main nerves. Do you have pain in the abdomen area
>>as well, not just the lower pelvic area? I get a lot of pain around my
>>belly button and it terrifies me that I might have to go through another
>>laparoscopy. Since they say I have the IBS, it's like the doctors don't
>>want to go any further but i'm going to at least try and push this new
>>doctor I'm seeing on Tuesday for some answers. I'm sure he won't do
>>anything right away but I'm going to keep going because I can't live
>>like this, although I have no choice right? I feel for you with having
>>young children, I've been in that boat when they were younger, mine are
>>now 13 and 10 and the 13 year old helps me out a lot now, the 10 yr old
>>is pretty good too. When I had started having the pain years ago and
>>they were much younger, babies and toddlers, I had family around to help
>>but now where I live everyone is about an hour to an hour and a half
>>away from me so if I was to get a massive attack I'm in trouble. My
>>husband just got a new job so he will be traveling most of the week and
>>home on Thursday afternoons/evenings until Monday morning but I still
>>have those 4 days to think about. I'm praying that I won't have an
>>attack! I get the sharp pain which comes on all of a sudden out of
>>nowhere, I am constantly holding my side, whichever side that may be at
>>the time that I feel it might come on but years ago the doctors had put
>>me on Levsin sublingual. Have you tried that? It is a tiny white pill
>>and when you feel a spasm (which is what they think it is), I have to
>>say it does help some and has taken the pain away to the extent that I
>>can function. I am wondering if the endo has attached itself to my
>>intestines, who knows but if you haven't tried that maybe that would
>>work a little for you. If you did ask about it and your doctor decided
>>to try you on it, MAKE SURE its the sublingual one. The other one,
>>regular tablet, you can wait an hour before it starts to work IF you're
>>lucky!
>>
>>Good luck to you and please keep in touch. My prayers are with you
>>because I know EXACTLY what you are going through.
>>
>>INNY: I too find myself constantly looking around now, that is how much
>>this changes your life, constantly wondering if you'll ever be like that
>>person walking or that person running or that mother who is running from
>>place to place with her kids. My son has a field trip to go on in a
>>week and I cannot go because I would never want to have the attack on
>>the school bus or be that far away and have to worry about driving home
>>if i took my own car on my own with that bad of an attack. It's just
>>not worth it! Thanks for your story, it sure helps to talk with other
>>people who are going through the same thing and you don't feel so alone!
>>Keep in touch.
>>
>>Thanks,
>>Sherry
>>JFJ629x@charter.net
>>
>>At Mon, 29 May 2006, anonymous@obgyn.net wrote:
>>>
>>>Hi Suzie, Sherry!!
>>>
>>>In both of your stories I recognized all of my chronic pain symptoms,
>>>the only difference is that I don't have kids. Otherwise, I'm in the
>>>same boat. All the test they have done so far - everything normal. I
>>>was sent home more than once with a brief "you really shouldn't be in
>>>pain now". BUT I AM!!!! Best I can tell you Sherry is to go for tests,
>>>laps, more tests, everything until they give you a real diagnosis and
>>>some treatment for your pain that actually helps. Once it starts
>>>helping, that (to me) means they have nailed the problem. I'm still
>>>waiting for my laparoscopy, but everyone has believed I have
>>>endometriosis for about 10 years now....I was a coward to go for a lap
>>>then, now I'm begging for one. So don't delay your Dr. appointments!!
>>>Make them listen and diagnose, and treat you properly....not just send
>>>you home with some painkillers and that's the end as far as they're
>>>concerned. They've done that to me many a time.
>>>
>>>As far as the quality of life....I know how it feels to not be able to
>>>fend for yourself, to wait until there is not a morself of food left in
>>>the pantry to go to the store....then carry all those bags up 2 flights
>>>of stairs....a lot of my idle time recently has been spent just looking
>>>around me, looking at all kinds of different people: my friends, my
>>>family, people in the store, people on tv, rich people, poor people,
>>>people everywhere....and constantly as I look at them I keep asking
>>>myself inside my head "are they in pain?", "do they know even remotely
>>>how this feels?", "boy, I wish I can do that dance move", "I wish I
>>>could walk for hours on the beach like that, like I used to"....I wish,
>>>I wish...I wish. The only answer that I keep finding is a good ole'
>>>quote goes something like this "THIS TOO SHALL PASS". It just has to.
>>>We have to keep track of everything we can, push the doc's to find the
>>>solutions they are there to research and find, for each of us our
>>>personal "cure"....and hope for the best. Live this life best we can
>>>with this debilitating pain.
>>>
>>>I really haven't helped much, but I felt like sharing cuz I saw myself
>>>in both your stories....it's amazing to know there are other people out
>>>there with exact same pains!!
>>>
>>>Good luck!
>>>
>>>Inny.
>>>
>>>At Mon, 29 May 2006, Suzie wrote:
>>>>
>>>>Hi Sherry!
>>>>
>>>>I know exactly what you are going through, it was like reading about
>>>>myself. I have had pelvic pain for over ten years now. The first doc I
>>>>saw about it just attributed it all to damaged muscles from a car wreck.
>>>>Three years ago, I went in for same pain, ended up having my gall
>>>>bladder removed. Pain never went away. Next doc did all kinds of
>>>>expensive tests, then determined it was natural female pain, just part
>>>>of being a woman. Since then, I always just dealt with the pain,
>>>>thinking I was an inferior person for letting my "natural woman pains"
>>>>send me to the floor. The pains have continued worsening.
>>>>
>>>>In January, I woke up with such a bad cutting pain it literally sent me
>>>>to the floor. I could not get up without screaming in agony. My
>>>>husband took me to the ER. The sono tech asked about fibroids and
>>>>tumors during her exam, then mentions possible cervical cancer to the
>>>>exam doc. The male doc couldn't or wouldn't find anything wrong besides
>>>>a tiny cyst, so he sent me home with a laxative! I have IBS,
>>>>constipation has never been an issue.
>>>>
>>>>It was six weeks later before I could see my regular gyn. Just from the
>>>>ER tests, he very quickly diagnosed beginning stages of endo. Lap has
>>>>to wait for health reasons. I am now getting the sharp shooting pains
>>>>all the time, not just before my cycle. When I saw the doc again last
>>>>week, he said the endo is either progressing at a very rapid rate or it
>>>>is finally attacking some main nerves. He prescribed 12hr Celebrex
>>>>twice daily. It helps cover the pain, but surgery will be necessary
>>>>soon. I try to use a heating pad for the back pain. Its hard to know
>>>>which way to bend, isn't it? Doubled over for the cramping or arching
>>>>backwards for the back?
>>>>
>>>>I am a stay home Mom with a 3yr old and a four year old. My husband
>>>>works nights, so its just me and the kids. Friday I was hurting so bad
>>>>I had the kids spend the night with my sister. Their first overnight
>>>>stay without me did not go well. If they can't survive one night
>>>>without me, how will it work for the three nights I'm in the hospital?
>>>>My husband can't take off work, we're barely not making it as it is. I
>>>>can't take the meds the way I'm supposed to because they knock me out.
>>>>Who watches my babies while Mommy is in a druggie stupor? When I'm
>>>>hurting without the meds, its just as bad. Then my four year old wants
>>>>to know if I'm dying like Great Grandma. I've learned to try to balance
>>>>the meds to a tolerable level of pain where I will stay conscious. I've
>>>>also started letting the kids sleep with me on the nights my husband is
>>>>at work. That way, them moving around wakes me up long before they can
>>>>get into mischief.
>>>>
>>>>I've also learned to make lots of short trips to stores instead of long
>>>>shopping excursions. My husband is good about running into stores for
>>>>me as long as I keep his list short and exact. I also try to go when I
>>>>know the stores aren't busy and park at the door where I'll be coming
>>>>out at. The less walking I have to do means fewer attacks of pain. I
>>>>also carry a small bottle of Advil in case I don't survive the trip. A
>>>>few weeks ago, my kids and I spent an hour in the shoe dept at Wal-Mart
>>>>waiting for the Advil to kick in so that I could make it to the
>>>>register. We ended up buying six new pairs we didn't need:). You just
>>>>do what you have to. I say lots of prayers and just focus on a better
>>>>day to come.
>>>>
>>>>Hope some of this helps. Get to a doctor soon so that you can get
>>>>started healing sooner!
>>>>
>>>>Best wishes,
>>>>Suzie
>>>
>>>>At Sun, 28 May 2006, Sherry wrote:
>>>>>
>>>>>Hi, I am new to this forum. I have suffered for years with chronic
>>>>>pelvic and abdominal pain. I have had 2 c-sections in the past and 3
>>>>>laparoscopies with the last one being 9 years ago to remove my appendix.
>>>>>I have had numerous CT scans over the years and ultrasounds and all
>>>>>being completely normal. Problem is, pain is worsening, been to
>>>>>emergency several times over the years with no results. My blood work
>>>>>all comes back normal except I have a high SED rate which is due to
>>>>>inflammation I am told. I have been diagnosed with IBS and am now on
>>>>>meds which have seemed to help some of the pain. Problem is, the pain
>>>>>is still there from the pelvic area, I have a terrible "tearing" pain,
>>>>>somewhat mimicks a really bad spasm, it's starting to affect my bladder
>>>>>where all of a sudden when standing it will bring on an attack and will
>>>>>rise to my abdomen area to where I cannot move. The doctor that I am
>>>>>seeing is sending me to a new Gyn on Tuesday. The previous Gyn (who is
>>>>>now out of my area for insurance) had put me on birth control pills, Lo
>>>>>Ovral. He said it was the lowest dose out there. I have always had
>>>>>periods which were not heavy, heavy flow but heavy enough with terrible
>>>>>pain which has been in the last 10 years and seems to be getting worst.
>>>>>Sometimes I can be standing and the pain will stop me dead in my tracks
>>>>>for sure. It hurts to have intercourse now, I have terrible pain no
>>>>>matter what. The pain has gotten to where I cannot lead a normal life,
>>>>>my family and I were in a store today and because I had been walking
>>>>>around, I felt the pain coming on and when I feel this coming on I have
>>>>>to hold my side so I had to leave the store and go wait in the car. This
>>>>>is where it has come to now.
>>>>>
>>>>>I feel like I am alone in this situation but I know that many of you are
>>>>>suffering with chronic pelvic pain. My question is, does anyone out
>>>>>there have any type of these symptoms, where it gets to the point where
>>>>>they cannot even do something as simple as "walk" because the feeling of
>>>>>a knife cutting through you or some type of spasm going through your
>>>>>pelvic area, also like a heaviness? It is getting worst but
>>>>>laparoscopies done years ago were all normal, only thing the doctor had
>>>>>said at the time was "there was some abdominal fluid floating around and
>>>>>I looked around everywhere to see if I could tell where it was coming
>>>>>from and couldn't find anything". This is where it was left off. I
>>>>>also have terrible low back pain all the time. How do you function when
>>>>>you have a husband and two young kids. This is truly getting to be
>>>>>debilitating. I see the new doctor on Tuesday so I'm waiting to see
>>>>>what he will say.
>>>>>
>>>>>Please help!
>>>>>
>>>>>--
>>>>>Sherry
>>>>>JFJ629x@charter.net
>>>>>
>>--
>>Sherry
>>JFJ629x@charter.net
>>
--
Sherry
JFJ629x@charter.net
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