Re: Thanks for advice mls99 & anonymous. Here's a long story for those who suffer all sorts of symptoms & pain. Hope someone finds it interesting or helpful
From: anonymous (anonymous@obgyn.net)
Sun Sep 21 17:21:44 2008
Hi Bren,
I feel the same way about this being my only outlet for support. Friends
think I'm faking or pushing them away, when the truth is i try to tell
them what's wrong and they dont believe me and think i'm saying im in
pain just to get pain pills. I too have not had much of a social life
since i had surgery 3 months ago. I also have painful bowel movements,
but I guess I'm still new at this and chalking it up to part of the endo
experience. Any info you have is appreciated. Im on Lurpon, but am
trying to figure out what i can do diet wise to make things better.
Just so you know: it's not in your head. you're not crazy. I thought
the same thing at first. The kind people here and other internet
research has convinced me, finally, that my pain is actually real.
I wish you well. Know that you are not alone. And keep bugging the
doctors if you have to. It seems like a lot of us are getting brushed
off, which really bothers me. I"m not sure if the docs think they are
doing the best for us based on what they know, or if they just want to
get rid of us. In any event, find someone that WILL help you. And
remember we are all here for you.
At Sun, 21 Sep 2008, bren wrote:
>
>Thanks all for the reply. Unfortunately,my post-op just said if there
>seems to be a complication, to call 911, However, I don't think it's
>something to call 911 about. I did email my doctor (I have Kaiser &
>they have a system kp.org in which I can email my doctor's office
>directly). I'm still bleeding, but don't have severe pain that isn't
>manageable by my pain meds. I will definitely listen to your advices &
>try to find a way to get a hold of my doctor immediately. I know if I
>go to the ER, they don't specialize in anything like our problem of
>endo, so I know I'll be turned away. I have too many experiences at the
>ER where they just sent me home & was told they only take care of
>life-threatening situations.Since I haven't passed out yet or having any
>chest pains, I know I'll be turned away. It's said that many of us have
>to suffer this terrible disease. I was diagnosed w/ endo through a
>physical exam, yet still awaiting for a diagnosis through lap. You'd
>think I'd be happy if they didn't find endo, but not in my case. I hope
>they found something that proves that I'm not going crazy or all this
>pain I've been sufferring from for months is all in my head. This forum
>has better support than any of my friends. I haven't had a social life
>for over 6 months & my friends never even call to see how I'm doing or
>what's even going on & if they knew the way I felt, they'd probably turn
>it against me & say "well, you never told us what was wrong"...Only
>because we here all know it's hard to explain the pain we live in &
>difficult to get anyone to understand unless if they experience it for
>themselves. I too had symptoms of IC (bladder pressure,urinary urgency)
>& it only improved after my 2nd month on depo provera pills. The worst
>pain I've been sufferring from was the sciatic nerve pain down my legs
>(especially the left) & lower back pain w/ the "nerve type pain" in my
>pelvis. I'm sick of having to rely on someone to feed me my meds in the
>morning just so that I can get out of bed. It seems that no one in the
>med. field will listen in detail to my symptoms of black period blood
>w/ clots & how I feel that my retroverted uterus is actually glued to my
>rectum causing a blockage. I was told I had constipation & even tho'
>some of the meds can cause this, I feel that the meds are not the only
>cause b/c w/ each bowel movement, I get cramps in my pelvis (like
>menstrual cramps) as if the bowel is trying to push my uterus foward so
>that it can pass through the rectum (Sorry, I seem to give tmi each
>time). If anyone out there is sufferring the same problems, especially
>w/ the bladder discomfort & muscle spasms, let me know & I'll tell you
>what helped me. I've probably suffered & still sufferring from many
>different symptoms & been guinee pigged w/ meds to find what works &
>doesn't work. I've been told by a neurologist that endo can spread into
>the piriforms muscle in the pelvis (mimics sciatic pain if this happens)
>& also can spread onto the major sciatic nerve in your pelvis, which
>causes the nerve pain that travels down to your leg(s). I was also told
>it can get onto your bladder, which causes that pressure & IC
>symptoms/urgency to urniate, etc. My rheumatologist sent me for an EMG
>& I found out that the numbing I was getting in my hands were caused by
>carpal tunnel (w/ unknown cause because it was not caused by the
>norm-typing, etc). I was told it could be from the cringing @ night
>while asleep. So as you can see, I have tons of symptoms that make my
>situation quite complex & debilitating. The list goes on-leg swelling,
>weight gain w/ loss of appeitite, nausea, sweating around face & chest
>only, unusual scarring on skin, slow healing scars, etc.. Basically, w/
>each menstrual cycle, I get a new symptom.
>So, if anyone has any of the same symptoms & has questions or comments,
>I'm willing to answer or help in any way I can. Before endo was
>considered, I was misdiagnosed, sent to wrong specialist, etc...sad part
>was I had to do extensive research & thinking & studying of my med.
>history to get me to the right specialist & lead. Believe it or not,
>this is the short version of my long long story. If you read all the
>way through, thank you. Just like the help & advice I get on this
>forum, I want to do the same for all of you. If you haven't read the
>"endometriosis survivor letter", look it up in your search engine & it
>will be VERY moving. & to those who replied to my adviced needed on
>bleeding after lap, thank u so so much,...
>
>At Sun, 21 Sep 2008, MLS99 wrote:
>>
>>I agree with the previous poster: my post op instructions also said to
>>call the doctor immediately if soaking a pad every 2 hours. The risk is
>>that you have a complication from surgery. Does your GYN practice not
>>have someone on call over the weekend? If not, I would go to the ED
>>immediately. Good luck.
>>Marianne
>>
>>At Sun, 21 Sep 2008, bren wrote:
>>>
>>>Thank you so much for your reply. The only problem is that I have no
>>>way of contacting my doctor until Monday & we all know what it's like to
>>>go the ER. Waste of money & time & u come out w/ just added
>>>frustrations (@ least in my case). I don't know what to do. Also, I
>>>know having no bowel movements for the first 3 days is normal, but I've
>>>been having constipation or feels like more of a blockage (since my
>>>uterus is retroverted/tilted, I feel like it's stuck to my rectum
>>>causing a blockage @ times-sorry tmi again). You would think that
>>>laxatives or enema or something would work well, but not in my case. I
>>>just want to know what's wrong w/ me & if endo is easy to diagnose
>>>during a lap or can it be easily missed as well? I don't know the
>>>results of my lap surgery yet, have photos, but have no idea what they
>>>mean or what part of my organs I'm looking at & what's normal/not
>>>normal..I have all the severe debilitating symptoms of endo, but sadly
>>>am worried that I'm going to end up in dead end w/o definite answers to
>>>the cause of all my pain. As you can sense, I'm feeling quite anxious &
>>>concerned, so thanks for reading through my venting. BTW, has anyone
>>>gained weight for no known cause especially strange for me since I've
>>>had lost of appetite & my metabolism is still quite fast.I just don't
>>>understand many of my symptoms. Thanks for even reading through my post
>>>& any advice is much appreciated so thank you. =)
>>>>
>>>>--
>>>>I just had my second lap for endo on thursay and my post op instructions say to contact your physician immediately if you are soaking a pad every two hours!!
>>>>
>>>--
>>>Bren
>>>
>--
>Bren
>
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