I gave up and got a hysterectomy. I wish I'd done it sooner. No more cramps no more periods. Having girly parts is overrated. So life is better. Tidier, less fuss no muss.
Surgery
1999 Notes-pt 1
Surgery
2000 Notes-pt 2
Surgery
2000 Notes-pt 3
Laproscopy/Laser
Surgery November 1997
Surgery
Recovery 97
Pre-surgery diagonisis with Ultra-sound October
1997
Surgery 1997 Notes
Treatments
and Practioner Referrals
Tests show that
I'm basically fit as a fiddle...except for that fatigue and pesky pain of
course. My cholestreral is an unbelivable 147, and you don't even know how
much fat I eat. mmmmm fat.
And all my other levels are perfectly normal...on paper I sure look healthy!
We discussed my new surgery goals and pain meds for surgery.
The new goals
for this surgery are: fix bilateral hernias, fix ovarian varicosity, remove
endo in abdominal area and inside bladder. Women apparently also get hernias.
Who'd have thought? Apparently they shouldn't re-occur and will relieve
the constant pain I now have, also this should make me able to walk and
run long distances again. Ovarian varicosity is basically varicose veins
on your ovaries. Again who'd have thought? This is possibly why my ovaries
are tender, I may also have some of these varicose veins on the uterus causing
pain. They tie off the vein and hopefully this doesn't re-occur either.
The endo is the same old stuff that is unfortunately not curable and may
come back again. Though the pain for that is not nearly as bad as last time.
Pain medication is going to suck. I can't take any synthetic opiates such
as darvocet, vicodine, or demerol. That leaves natural opiates of which
there are few. Codeine #4 looks like what I'll be using. It's no longer
very effective for me so that rather sucks. I had a prescription for morphine.
It's like the holy grail of pain meds right? wrong. It doesn't work for
me. I couldn't believe it. Nothing...it doesn't even make me groggy! It
does make me slightly naseous and give me horrendous abdominal wall cramps
though. nice huh? So that doesn't leave much I can take. And they tell me
this will be horrendously painful. I reallly hope they are wrong. I guess
there's always booze if all else fails, though I hardly think that will
promote healing and I don't think I can stay drunk for a month without needing
a new liver. So hmmm.
Experimental
study:
I may participate in an experimental study this time for prevention of adhesions.
The drug is called ADCON-P-made by Gliatec and is currently used to prevent
adhesions for back surgery patients. They haven't had any adverse reactions
as yet. There is of course the chance that a) it won't work b) I get the
control-which means it's a placebo or c) it makes it worse-though that isn't
generally the case. This means I have a 2nd look surgery four weeks after
the main surgery. It will take up to a week to recover. I'm thinking about
doing it because it will help our cause in this fight against pain-and I
am always whining about the lack of research so I want to promote that in
any way I can. ADCON-P is two polyglcan-esters which are supposedly sugar-like
substances. So we'll see what happens with that.
Pain symptoms
Constant pain in adominal muscles. Some tendernes both ovaries, uterus, painful
cramps during menstration, painful intercourse- occasional sharp pain in the
bladder area and ovaries, some achiness all over the body, sharp pains during/after
urination if the bladder is too full some pain with bowel movements.
Other symptoms
Fatigue, I usually sleep at least 10 hours a day. I'm exhausted all the time.
Depression and anger during hormonal swings, depression during PMS, and anger
during periods...
PMS, I never used to get PMS..bloating, emotional, sore breasts, ..always
a good time.
Spacy disoriented feeling, forgetful.
More to come!
Pain symptoms
Constant pain in both ovaries, painful cramps during menstration, painful intercourse-sharp
pain in the uterus and ovaries along with general fear of it, constant lower
back pain and achiness all over the body, sharp pains during/after urination
if the bladder is too full.
Other symptoms
Asthma, started when the first symptoms of endo started during pregnancy. (See!
pregnancy doesn't work for everyone, it started my symptoms.)
Fatigue, sometimes I sleep 12 or 16 hours at a time. I usually sleep at least
10 hours a day.
Depression and anger, well this is hard to deal with, but the hormonal weirdness
tends to aggrevate this.
PMS, I never used to get PMS..bloating, emotional, sore breasts, loose stools...always
a good time.
Spacy disoriented feeling, forgetful.
My
symptoms post-surgery(nov. 97-sept 98):
See also Recovery and
Surgery
Pain symptoms
mild cramps during menstration, sometimes painful intercourse-still with general
fear of it, constant lower back pain and achiness all over the body, mild pains
during/after urination if the bladder is too full on occasion.
Other symptoms
Asthma, started when the first symptoms of endo started during pregnancy. (See!
pregnancy doesn't work for everyone, it started my symptoms.)
Fatigue, I'm still very tired, but I'm down to about 10 hours and can sometimes
manage with 7 if I have to.
Acne. Yes that's right, I've manged the first 28 years without it more or less-minus
that spell right before your period, but now I have it all the time. This started
in about January and Dr. Kresh is puzzled. Keiko thinks it's from toxins and
stuff still clearing out from the surgery. Beet juice (a de-toxifier) does seem
to help. Well I suppose I had to have my share of ugly someday. It's not so
bad generally that makeup won't cover it at least, I'm just not used to wearing
it!
Accupuncture/Chinese
Herbs, ACTCM clinic, San Francisco 415 282 9603, sliding scale.
This helped get me into remission for about a year and a half. This doesn't
seem to be helping any longer.
Chiropractic/Kineseology, Dr. Keiko Gill, San Francisco .
This helps a lot for the back pain and the tension in my abdominal area. She's
wonderful I don't know how I'd manage without her.
Chi Nei Tsang, Donna Krietzman C.M.T., San Francisco.
It seemed to be helping my organs function better. This is Chinese Organ Massage.
It involves getting you to breath all the way into your abdomen as well as massaging
and stimulating the organs. Unfortunately Donna is no longer doing this..there
are other practitioners of course.
Immune Therapy, Helena Women's Clinic, San Jose
408-999-7900
1998-This tests for allergies to the hormones the body produces, causing the
body to attack itself. The idea is to detirmine what amount your body can tolerate
with out reacting to the hormone. Then you take that amount orally in drops
under the tongue everyday in order to build up a tolerance to the hormone. It's
call "oral tolerazation." Symptoms can include fatigue, nausea, dizziness, asthma,
headaches, spacyness, skin reactions, amoung others. Test results show that
I'm allergic to LH, progesterone, and mostly especially estrodil but not canidida-yeast.
1999-I have noticed that I have significately fewer Asthma attacks...in fact I haven't taken medication for Asthma in 2 years. Other than that, it's not particularly noticiable. Some people have more noticible results. The yearly retesting seems to indicate that my tolerence of the allergins (my hormones) is increasing. The reactions happen to double the original amount. So that's a good sign.
2000 update-Just
finished retesting for allergies. I am no longer allergic to LH. I am still
allergic to progesterone and estrodil, so I'll be continue to do the immune
theraphy.
Laproscopy/Laser Surgery 1994, Dr. James Thom, PAMF Palo Alto.
Well I'm not completely convinced he did anything at all in there. It took about
a month before I noticed any improvement and then it only lasted for 5 months.
His bedside manner was "I couldn't find anything in there you have no reason
to be feeling pain. You are being a wimp." What a lame bastard. The ultrasound
previous to the surgery showed that there were ovarian cysts, Dr. Thom's surgical
report did not reflect the removal of these cysts. I think he just missed them.
I do not recomment PAMF, if you have to go there Dr. Sieglar is very sympathetic
and reasonably good, though this is not his specialty. I have been to see every
other doctor at PAMF and their inappropriate responses range from "You should
have a baby," to "You won't take Danzol and you don't know how to breathe, so
you just don't want to get better." (This last came from a very overweight pig.
As if he would know how to care for his body!)
Laproscopy/Laser Surgery November 1997,
Dr. Arnold Kresh, Helena Women's Clinic
Pre-surgery diagonisis with Ultra-sound October
1997
I highly recommend Dr. Kresh. The amount of prep work being done is much better.
I'm very involved in what they are doing. They are happy to explain anything
so that I know what and why they are doing it. No one tells me I'm being a wimp.
They are very sympathetic to pain and are very careful in examinations so that
they don't cause unnecessary pain. My surgery is scheduled for Novemeber 4th,
1997. I just got the ultrasounds above on October 15th, 1997. So I know there
is nasty things in there on both ovaries and the uterus. They were very nice
to print out a couple extra copies for me to keep. Dr. Kresh is very good but
a bit expensive. It's worth it though.
Laproscopy/Laser Surgery November 1999, January
2000 , Dr. Deborah Metzger, Helena Women's Clinic, 408-999-7900
Pre-surgery diagonisis with Ultra-sound October
1999
The amount of prep work being done is still excellent. Helena Women's Clinic
keeps on top of new treatments and research in the field. My surgery is scheduled
for Novemeber 10th, 1999. I have ultrasounds to post but haven't gotten the
chance to yet. Again everyone at Helena Women's clinic is very good but still
a bit expensive. It's worth it though.
Last Modified: 7 November 1999 Raven
Erebus