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Re: anyone living a normal life out there? if so, can you give me some advice Andrea
From: andrea (anonymous@obgyn.net)
Wed Jul 25 21:44:34 2007
My specialist said he could tell that my ovaries would not move during a
vaginal sonogram, meaning they were fastened down by lesions. He said
very heavy periods, big clots, lots of lower back pain and pain with
intercourse are all symptoms of endo. I fill up the biggest tampon, ONE
AN HOUR the first 2 days. And, my uterus was already full of blood
during my sono, like I was going to start another period, when I had
just finished my period the day before! He said that's a sign of
Adenomyosis. Another doctor years ago said she could actually feel some
of my lesions during a vaginal exam.
No, I have never had a lap, but desperately need one. It is the worse
pain I have ever felt in my life and I have had 2 other surgeries and a
broken foot and that pain never came close to what my period pain is. I
get 102º fever, a migraine and feel like I am dying. All gyno's tell
you that you need a lap to diagnose it, but if you go to a specialist,
and tell them ALL your symptoms, they know a lot more and are pretty
sure what the problem is. My doc is a pelvic pain specialist, so he
knows his stuff and I trust him.
At Wed, 25 Jul 2007, anonymous wrote:
>
>just curious, how did you have your endo diagnosed if you have not had a
>lap? It was my understanding that a lap was the only was to diagnose it?
>just curious if there is another easier route...
>
>At Wed, 25 Jul 2007, andrea wrote:
>>
>>Hi, Jennifer.
>>
>>I have to say, Lupron scares the holy crap out of me and every doctor
>>I've been to in the last 10 years has tried to put me on it except for
>>one, and HE'S the only one I trust! Many women get bad side effects that
>>are irreversible! Bone loss and memory loss are the most common. I
>>think the best way to deal with this disease is to go to a great
>>specialist, who can get as much endo excised as he can and then balance
>>your hormone levels.
>>
>>I guess I have a somewhat normal life, but still have 3 days of severe
>>pain with my period and right now I don't feel good because I have an
>>ovarian cyst. I get one about every 2 years now. I can only work
>>part-time because I always end up taking days off for my period. I am
>>most likely going to have an extensive lap surgery next month. I have
>>never had one, because I could never find the right doctor. Now, I have
>>a specialist named John Dulemba in Denton. I can sympathize with your
>>pain and fatigue. It's awful. Just don't let your doctor make you feel
>>like Lupron is your only hope.
>>
>>Check out my July 7th entry that says "The Cause of Endo" and see if you
>>have had any of the same symptoms I used to have. I started taking
>>bio-identical progesterone 4 years ago to balance my hormones and it
>>helped so much! Your doctor giving you Estrogen makes no sense, because
>>that is what makes endo GROW! The best add back to take is Progesterone
>>because it gets rid of yucky symptoms and supresses your estrogen so the
>>endo won't grow. So many doctors out there are just plain stupid when
>>it comes to this disease.
>>
>>If you end up not liking your doc or treatment and want to go an
>>alternative route, these doctors in Houston use herbal progesterone to
>>balance your hormones:
>>
>>Dr. Steven F. Hotze, M.D.
>>Hotze Health & Wellness Center
>>20214 Braidwood Drive, Suite 215
>>Houston, Texas 77450
>>281-579-3600
>>
>>Dr. Loretta Lanphier, ND, CN, HHP
>>Oasis Advanced Wellness
>>35 S CreekMist Place
>>The Woodlands, TX 77385
>>832-295-0560
>>
>>Dr. Gilbert Manso, M.D.
>>7211 Regency SQ # 200
>>Houston, TX 77036
>>713-840-9355
>>
>>Dr. Ronald M. Pucillo, M.D.
>>Board Certified Family Practice
>>4415 Hwy. 6 South
>>Sugar Land, TX 77478
>>281-340-9325
>>
>>Dr. Alex Vasquez, D.C., N.D.
>>The Whole Health Center
>>5177 Richmond, Suite 125
>>Houston, TX 77056
>>713-203-7828
>>
>>At Wed, 25 Jul 2007, Jennifer wrote:
>>>
>>>Hello.. My name is Jennifer. I have stage 4 endo all in my body -
>>>especially throughout my abdominal cavity. I have been sick and in pain
>>>since December and was only diagnosed with this in early June after my
>>>second laproscopy surgery and after they removed a bunch of organs for
>>>sytematic reasons.. gallbladder, appendix, part of my liver...
>>>
>>>I am seeing a specialist in the med center in Houston who has a clinical
>>>trial for people like me.. and since July 2nd, I have been taking a
>>>daily Lupron shot that I gave myself at home plus I wear an estrogen
>>>patch for side affects and take several different "oils" and am on a
>>>special diet.
>>>
>>>I am so run down and my body is always in so much pain and I am so tired
>>>and my life has basically become nothing... I sleep and when I am awake
>>>I try to just rest and the pain is so intense I just feel horrible all
>>>the time.
>>>
>>>My life is completely gone .... I just am wondering if anyone is in my
>>>condition - I want to live.. I want to go back to work - I want to be
>>>able to feel good and have a normal sexual relationship with my
>>>boyfriend.. you know.. just feel good enough to get out of bed at a
>>>reasonable time and live..
>>>
>>>I have already given up more than 9 months of my life to this disease or
>>>whatever it is.... and I just want to know what I have to do to learn
>>>to either cope with my pain or solve that issue so I can start my life
>>>again...I am very depressed and I honestly feel that I am in more pain
>>>now than I was before I started the Lupron daily shots.
>>>
>>>I have noticed that my diet has alot to do with it and when I eat
>>>properly and take all of these oils and follow the nutrition part of it,
>>>I feel somewhat better.. but the joint and bone pain is severe not to
>>>mention the pain I have had on my right side since December when I got
>>>sick...
>>>
>>>If anyone has any advice, please feel free to write me here or at
>>>urbancatdesignstudio@yahoo.com.
>>>
>>>Best Regards,
>>>
>>>--
>>>Jennifer
>>>
>>>At Wed, 25 Jul 2007, Stephanie wrote:
>>>>
>>>>Hello Jill....OMG...your story totally sounds like my Story!! LOL....One
>>>>of my coworkers tells me all the time...or should i say when she hears
>>>>me complaining...she tells me Girl, what is it today? She says it
>>>>playing around BUT i know she means it! So i totally understand how you
>>>>feel!! Its very frustruating dealing w/the daily pain, work and
>>>>coworkers who think that we are either faking it or exagerrating!! Im
>>>>also on Lupron...well only got one shot because i had really bad joint
>>>>pains, so i wont take it anymore, but people do think that since im
>>>>taking a medication, that i should be feeling better! Well NO, it doesnt
>>>>work like that!! Take Care and hope you feel better soon!! Steph :)
>>>>
>>>>At Wed, 25 Jul 2007, jillson wrote:
>>>>>
>>>>>Today I had a co worker say to me "is there anything that isn't wrong
>>>>>with you?" I just wanted to punch her. I try not to complain but
>>>>>sometimes I have to. My back always hurts if I don't take Motrin and I
>>>>>have a strenuous job. She knows my situation. If I ever call in sick
>>>>>everyone always asks me why and why am I having pain. I should see a
>>>>>doctor, like I don't already you idiots. They think because I am on
>>>>>Lupron and I had surgery I should be 100% pain free. Ugh! I have
>>>>>constant fatigue and it is getting hard to pretend anymore that
>>>>>everything is "fine". Thanks for listening I just had to vent.
>>>>>
>>>>>Jill
>>>
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