Re: How surgery went/ Linda, (long)
For more information on symptoms and treatment of endometriosis visit www.EndometriosisZONE.org.
From: yenta (anonymous@obgyn.net)
Sun Nov 29 14:35:20 1998
Dear Elizabeth,
Sorry to hear that you are in such bad shape. Have you tried calling
one of the physicians at http://www.womenssurgerygroup.com and asking them who
they would recommend you see in your vicinity? Please do this tomorrow
morning -- you will be happy you did. You could call Dr Harry Reich's
Pennsylvania office and ask his assistant if she could get that
information for you -- if there is a great dr. in your area, Dr. Reich
will probably know of him. I hope Reich doesn't read this and get angry
with me for pushing phonecalls to his office, but I have to tell you
that I think so very highly of him and I truly feel that he is of the
sort who would want the best for you as well (he's very much a "human
being"!). Please do this first thing in the morning.
I also took ballet from ages 3 - late 20's!
I'm going to write again later but I want to go take a walk before it
starts to rain. In the meantime, please check out the above site and
feel free to email me privately if you wish at my hotmail site.
Take Care,
--
Yenta
At Sun, 29 Nov 1998, anonymous@obgyn.net wrote:
>
>Dear Yenta,
> Well, not exactly a higher plane. I believe in medical
>treatment, but my lift has been a history of having to
>find ways to fight pain myself. Doctors didn't like
>to treat me because I "looked" healthy. As a child and
>young woman I took dance lessons for about 16 years. If
>dance teaches one thing, it is to use the larger muscles
>so that the little muscles or organs don't hurt, and to
>push any other pain away. I had terrible cramps in high
>school, but my doctor (they often make girls see
>Pediatricians until 18, which is entirely unappropriate)
>gave me tranquilizers which I didn't like. Then, seeing
>the first gyn, he said that is "normal," that cramps
>meant that you could have babies later! My grandmother
>had a traditional pain remedy: gin, but although the
>juniper berries act as a muscle relaxant, it didn't
>do much. I stopped dancing because pain near my
>left colon caused me to favor that leg, and I came
>down on the leg and pulled a tendon and couldn't
>do anything, in fact, I limped for a couple years.
>(I looked "healthy" so doctors didn't do anything
>about that, either.) I did have my tonsils out
>around that time, but I had to BEG for strong
>enough antibiotics and for refills, even when my
>entire throat looked like cottage cheese and every
>lymph node in my body was swollen.
> This kind of great medical care continued in
>every area of my life: I gave birth to a 10 lb. 2 oz.
>baby naturally with only an episiotomy and no other
>pain killers. The doctor had said, up to delivery,
>that the baby would be very small and I should have
>been eating more. My doctor was gentle, but at the
>delivery she was assisted by a go-get-em resident
>who practically jumped on my abdomen to push the
>baby out, and that really hurt for a long time.
>I had also had periods for the first few months of
>pregnancy, so I didn't know when she was due.
> I nursed my baby, and when the periods stopped,
>instead of feeling better, after about a year I
>got horrible symptoms. I had gotten used to
>dealing with pain by pushing it away in my mind,
>but my body played a trick on me: it started to
>go into shock from pain. For me this meant skipped
>heartbeats, fast heartbeats, difficulty breathing,
>dizzyness, inability to digest food (it would exit
>the same color as it entered), numbness and itching,
>pains all over the place. It couldn't have been
>active endo because I didn't have my periods for
>awhile, but it was a hormone problem caused by
>this breastfeeding time. I went to all kinds of
>doctors in one of the best hospitals in New York
>City: the cardiologist said I was O.K., they
>took blood tests for diseases and I was fine,
>the neurologist said that I had slow responses
>but that was probably due to "a virus." Nobody
>mentioned hormone imbalance due to breastfeeding.
>I was glad when my periods started again, but they
>were heavier than ever, and the pain was really
>bad. I could fill an overnight size pad in an
>hour. I started praying about then, because
>every day I was just thankful that my heart
>hadn't stopped. The prayer did calm me a little,
>but it also led me to discover that I had allergies
>such as to foods like corn, and also to any kind
>of insect: allergies I hadn't had before. I
>took Panothenic Acid (a B vitamin) which helped a
>lot, and Benedryl for immediate symptoms. I had
>done all sorts of alternative meditation before that
>time but it didn't help, because I had to find a
>source of strength outside of myself.
> I began to feel awful in my back, and went
>to another gyn in Brooklyn who said that that wasn't
>so bad, but I did have erosion in my cervix, possibly
>because of the large baby I delivered, and I should
>have cryosurgery, which he did. It did help my
>cramps a little, but my back pain increased until
>I couldn't stand up for more than a few minutes.
>I asked if I had endometriosis, but he said I
>probably didn't. (No lap.) I stopped drinking
>coffee, which helped, but it still was bad.
> I shyed away from doctors as much as possible.
>Often, they tried to put me on birth control pills,
>but that only made me feel worse, and made my feet
>swell up almost double, which is funny because
>although I have big hips, I have thin lower legs and
>ankles. They also made me feel bloated and congested,
>and increased the pain of periods. One doctor sent
>me to a urologist because of this and difficulty
>urinating, and he catheterized me, but found no
>problems in my urine. Again... I look healthy,
>and no doctor other than a gyn has ever heard of endo.
>I also have varicose veins and veins near the temples
>of my head which hurt, but my family doctor thinks
>I am just worried about the way I might look in a
>bikini (really!), even though I haven't gone swimming
>in years because of back pain in the cold water.
>This same guy gave my husband all kinds of blood
>tests (he doesn't look "healthy") and found a liver
>problem, but the same doctor hasn't even given me
>a cholesterol test! (A former doctor found I had
>high cholesterol.) Don't get me started on the
>choice of doctors on insurance plans...
> So, this year I finally went to a gyn who gave
>me my first laparoscopy (October 28th). My entire
>left side of my abdomen was one large mass of
>adhesions, including my bowel and other organs.
>On my right, I had endo on several organs. I saw
>the glossy pictures and there were these large
>red spots on almost everything. I had cysts on
>ovaries. In my uterus (which was overly large)
>I had a large polyp and fibroids. None of this was
>malignant, luckily. The doctor tried to get everything,
>and unstick the adhesions, but my body is still very
>sensitive. This was Dr. Marchetta in Akron (I now live
>in Ohio), and he actually was on my insurance plan!
>He is a very busy doctor here. If I get adhesions
>again, I'm sure it isn't because he wasn't careful;
>I've also had skin problems all my life such as
>excema and callouses, and I can have sticky stuff
>stick all my hair together in the winter caused by
>scalp excema; sometimes I think I'm made of glue.
>(We should get the best dermatologists to work on
>this adhesion problem, shouldn't we! If they don't
>understand membranes, nobody does.)
> Yesterday I worked for half a day, and I ended
>up on my feet for at least 3 hours. As I said,
>sometimes I do not feel pain, but that is more
>dangerous. When I left work, I was beginning
>to feel really bad. I had a lot of trouble
>concentrating driving home. When I got into bed,
>I began to feel the pain, and I began to feel more
>awake, and realized that I almost had gone into
>shock again. Last night when I went to sleep I
>hurt, and this morning when I woke up I hurt.
>When I feel the pain, it is less bad. I know that
>this is strange, that I don't always feel it
>directly, but I can really wear myself out this
>way, because I don't know my limits. Also, I think
>that I wasn't treated for years because of this.
>Sometimes I do have pain, such as when I go to
>the bathroom (because of my bowel involvement),
>and it is so bad that I start to faint. This isn't
>when I have my periods, because then I have
>diarrhea, which is horrible, but not as painful. I
>stuff a towel into my mouth and bite down really
>hard just to keep from fainting. One doctor
>checked the insides of my colon (again... I looked
>healthy). Sometimes painkillers don't work for me:
>ibuprofen does nothing, not for pain or fever. Others
>such as tylenol don't work either. Tylenol-codene
>(Percocet) works a tiny little bit, but I have trouble
>breathing, and it makes me dizzy. I could go on and on.
>I am now 45 years old, and wish I could get back a
>lot of days of my life that I just spent at home.
>Elizabeth
>
>At 11:29 PM 11/28/98 -0600, you wrote:
>>Dear Elizabeth,
>>Your brain operates on a much higher plain than mine!!! Actually though,
>>I like your analogy -- very creative!!! I agree with you entirely. One
>>of the fellow endo sisters misunderstood my reasoning -- I did not say
>>that one develops endo as a result only of surgery. I said the
>>possibility, in my theory, is that endo can develop from the scattering
>>of this endometrial material during surgery OR from, AS YOU SEEM TO
>>IMPLY IN YOUR CASE, an inflammatory event.
>>In citing the various theories, the drs. have mentioned the possible
>>"reverse flow" of menstrual product into the pelvic cavity as opposed to
>>the menstrual blood flowing down freely out of the uterus. Perhaps a
>>number of inflammatory events could possibly cause this to happen -- I
>>have a few in mind but am embarrassed of sounding like a total ditz.
>> As for your theory, I think its great! I like it!
>> Keep up the good work Dr. Watson!
>>By the way, Elizabeth, whats your story?! You know -- how many laps; who
>>performed the last one; what state do you live in; how are you feeling
>>now; what organs have been removed!; etc
>>
>>Yenta
>>
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