Recovery Journal

Pete Hueseman, R.Ph., P.D.-Compounding Specialist
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My Hysterectomy Journal & Experiences

It seems funny giving this journal the title of "Recovery Journal",
while, it is that, it has been almost 17 months since my total abdominal
hysterectomy with removal of both ovaries, tubes and cervix, for endometriosis,
adhesions, recurrent painful ovarian cysts and chronic pelvic pain.

Journal writings continue on: Recovery Journal 2

09/27/98-(14 months post TAH/BSO)

Up to eight months following my surgery, I didn't feel to bad, actually, after
the first initial 6-8 wks., I actually felt pretty darned good! I did have
problems with flashes and night sweats that were alleviated with natural
progesterone cream.

I did not use anything but over the counter progesterone cream for 14 months
following my hysterectomy for fear of recurring endometriosis.

Currently I continue to suffer from no libido, depression (being treated
with Paxil),weight gain (20 lbs in the last 2 months), fatigue, and
severe joint pain that has moved almost all over my body (back, hips, elbow,
tops of feet (around joint of big toe, knee, etc.) the foot pain is so severe
right now a trip to the store tonight was agonizing !

10/03/98-(15 months post TAH/BSO)

Today I got my first prescription filled for compounded natural hormones!!
The recommended starting dose given to me by Carol Petersen at Women's International
Pharmacy, that being-0.625 triple estrogen, 100mg progesterone and 2.5mg
testosterone all in one capsule, taken 2x daily.

It was a struggle, and ongoing hurdle for me, getting all this information together,
then presenting it to my doctor for her to prescribe for me. I was ready though,
I took all my info, literature to the appointment with me and to my surprise,
she was open to it and said she would prescribe it. I walked out of her office
that day, prescription in hand feeling ten feet tall.

Feeling that, in my hand, was the beginning of my return to feeling well again.

The only other challenge was the pharmacy, having HMO, there was a pharmacy
here in town that could make it for me but they were not with my HMO, so I
had to pay for the script up front ($48.00 for a one month supply) then submit
to my insurance for reimbursement. Since our family finances run pretty tight
every week, it was difficult, but I was determined to have it no matter what.

I was filled with so much excitement going with my husband to pick up the prescription,
like a little girl on her birthday or Christmas, (silly I know, but true).
When we got in the car, I immediately opened the package, and held the first
blue capsule in my hand, it looked and felt like gold to me. They are to be taken
with a full glass of water, I waited until I got home, got out one of the only
two crystal goblets I have (a little celebration!), and down the hatch.

Within three days, I began feeling a lessening of the constant joint pain that had
been with me for six months. Within five days, all the joint pains and body
aches were gone! I was amazed waking up, getting going and not being in pain
anywhere. Something I had not experienced for a long while. Although, I was very
happy, I was also afraid to be happy about it. Having tried so many things for
relief, the notion that this too would not last kept surfacing in my mind. I
struggled for a few days to get rid of that idea. I am blessed in that I have
fairly good control over my thoughts and thought processes,
able to "trick my mind" when necessary! *LOL*.

Things went well for about a six weeks, I then began having some mild joint pains
come back and a few mild hot flashes that I had not been having. I felt that
my body had grown tolerant of the dosage. Carol Petersen had recommended
staying on the dose for three months and adjustments could be made if I was
still having symptoms or problems.

I wish I had kept and daily journal of what was happening and my progress,
I just did not get to writing it. Now that I've got this far, I do intend on
keeping a daily account of my experiences with natural compounded hormone
replacement therapy, in the hopes that it may help someone else. As always,
please do not hesitate to email me if I can be of
any help or you just want to share or chat.

12/12/98-(17 months post TAH/BSO)
Well, it has been 2 months now and 9 days on the NHRT. Currently I am experiencing
a recurrence of joint pains that worsen with the weather and my stress
level. It's cloudy and we're expecting rain tomorrow and cooler temperatures
(finally!),it has been terribly hot here in Florida (still in the mid 80's)
too hot for December, sure doesn't seem like the holiday season. Even though
I've lived here for 20 years, I've never gotten used to it being hot around Christmas time.

Woke up this morning feeling very stiff and sore as I have for so long. Currently,
my back hurts, right tennis elbow is flaring up pretty bad again. I've
some pain in the top of my left foot, and let's see, that all?? *LOL* guess
that's enough eh?? I hate waking up in pain. I really really hate it!
There, I said that! Don't usually say I hate anything, but I do hate that!
I can only imagine how my 82 year old grandma feels, she has rheumatoid arthritis
pretty bad and I know she wakes up in a great deal of pain everyday. It takes her
a few hours before she can even begin getting around, I fear that, I cannot
imagine knowing that you will be in that much pain everyday for your remaining
days. The daily pain is depressing me, I fight that hard. I try to tell
myself that I could be much worse off, many other worse things that I could
have, it is still difficult though. When it hurts
before you've even stepped
out of bed in the morning, as soon as you open your eyes, well,
it doesn't give me much motivation to start the day!

I got really depressed about it one day last week,I have to be in to work at
7:30 am, I usually get up at 5:45, this morning I overslept,(I hate doing that
too!). Didn't wake up till 6:20, I hate to rush around, and if I don't have
my hot shower every morning and my two cups of coffee and glass of water
so I can take my nhrt, and the coffee helps to stimulate my ummm, well,
my morning duty *grin* If I don't have time to do all that, the day just doesn't
go all that well. We have to be out of the house by 7:05am in order to drop my
teenager off at the bus stop so often we are rushing out the door at the last
minute. This particular morning, I also had diarrhea, so I spent about 15 min. in
the bathroom, had to have my husband run my daughter to the bus, I was late getting
in to work and out of sorts and depressed when I did get there, I would have given
anything not to have gone into work that day! All morning long, I kept thinking
maybe I should take a medical leave of absence or something.

01/02/99-(18 months post TAH/BSO)

Happy New Year! I have a good feeling about 1999, I feel it will be a year of
rest, relaxation and recovery...the three r's :o) I also feel it will be our
year to be heard, to wake up the medical community to women's post hysterectomy
issues and problems and to hopefully increase awareness to other options
to reproductive diseases besides hysterectomy. Endometriosis and reproductive
cancers are one of the very few conditions I feel warrant hysterectomy. I've
shuddered over the last few months hearing women say their doctors recommended
hysterectomy as a "preventative" measure, as relief from PMS symptoms. The
aftermath of hysterectomy can be as serious as the reproductive disease a
woman is seeking relief from.

I continue to have pain throughout my body :o( I wake up feeling 80, with stiffness
all over, joint and body aches which usually ease up after a hot shower and moving
around, I am not a day without pain somewhere in my body all throughout the day
such as my tennis elbow, my shoulder, back, hip, today it is my right foot
towards the outside (hurts a lot walking on it, did nothing to cause it! Tennis
elbow and shoulder are pretty sore too.

I sent an email to Carol Petersen at Women's International Pharmacy outlining
the above continuing problems, she recommended that with my doctors approval,
I might begin taking the natural compounded hormones (0.625 triple estrogen 100mg
progesterone and 2.5 mg testosterone), 3x daily instead of the two times
daily that I have been. I began the increase 2 wks ago, I'll be going back to
my family doc Jan. 4th, and will discuss this with her to make sure it's ok.

01/05/99 Tuesday

Well, the post that I'm getting ready to write looks familiar to the one written
on 12/12/98! Hmmm, and I thought I was making progress!! Drat it all !
Woke up this am...late...looked as if my alarm was still set?? Woke up with
migraine or sinus headache, very tired, sore throat, low backache, mid backache
that felt like it was going to lock up when I bent over to pick up my shoes,
right elbow hurting...ahhhhh, it is all too much some days!

So, I called in to work to check the staffing, told them I wouldn't be in this
am, maybe later I would try to get rid of some of this stuff and see how it
goes. Just can't go in feeling like this. It's hard enough just being so tired
every morning, with all the stress I have there, can't even face it feeling
this bad. Took Tiffany to the bus stop (it's cold this morning!) came home
and took a loratab and a sinus pill. Even went to bed a little early last night
cause I was absolutely exhausted, hadn't done anything all day but go
to work, go to the doctor for my three month follow up since I've been on the
natural compounded hormones for three months now. That appointment went well.
Had diarrhea last night before I went to bed, and felt nauseated. What is
going on in and with my body??? I feel like its an alien!

My three month follow up with Dr. (my family doctor)went really well, I really
like her, she's a cool lady and we've developed a really good relationship.
She's very good about following up on problems or
anything we talked about from the last visit.

Told her about my continuing symptoms, and the pharmacist recommendation
that I take the nhrt 3x daily instead of 2x daily to see if it helps to reduce
ongoing symptoms, she agrees it is a good idea (I actually increased taking
them 3x a day about 2 wks ago when the pharmacist first recommended it),
so will continue with that and hope that it helps. Told her that I had been
going to a massage therapist trying to get relief for all the various joint
pains and body aches, she thinks that's a good idea too.

The massage therapist gave me an acupressure treatment for depression
last week. I've been taking Paxil, prescribed by the psychiatrist that I took
my daughter too, in June 98' for the depression that she has, which was
uncovered or discovered during a counseling visit that I took her too after
she ran away from home one night back in June, she admitted to the counselor
then that she's had suicidal thoughts, he recommended that psychiatric and
depression medication might be indicated since she was feeling that way.
When I took her and listened to the doctor talk about depression, and that it
could stem from accumulated stress and the chemical reactions it causes in
the brain, I realized I had a problem too and went in to see him separately myself,
he put me on paxil then (June 98') and I've been taking it since then.
Since I've been on it for six months and with the therapist treating me
for it I decided last week that I wanted to get off of it. I don't like
taking prescription medication long term for anything anymore, unless it is a
critical need, plus I have gained 40 pounds since June. I was told by our
Director of Nursing at work that Paxil does cause weight gain, when I
asked the psychiatrist about this, he said no, it didn't, and that if there
was a related weight gain that it would be from feeling better and possibly
eating more. I told him this was not the case with me as my diet has stayed the
same, which was already healthy and low-fat.

When I told Dr. yesterday that I was in the process of getting weaned off of
the Paxil, she said she would be interested to see what happened with my
weight when I got off of it...told her ME TOO! But that the psych had told
me it doesn't cause weight gain, she said that it does! ? ! Asked her why the
psych would have told me it doesn't if it does, she said sometimes doctors will
not tell you something like that, that it doesn't, because they think you
won't stay on it if you think that it will cause you to gain weight.....! Told
her, didn't he think I would find out eventually? We laughed about this, she
said he didn't know me like she did, that I wasn't the typical patient and
he wasn't aware that I would be doing research on it and all. So......! What
does all that mean? That doctors tell you what they think you need to know
instead of the facts.??! I think it would be much better to tell people the
facts, it only causes confusion and mistrust!!

Upon my telling her how exhausted I was still every day, she asked me if my
husband complained about me snoring, and yes, he does, she is sending me
for a sleep study for possible sleep apnea, which can cause one to wake up
tired. I think its good to rule out all possibilities of other potential causes.

I never would have dreamed that 18 months after my hysterectomy I would be
feeling so bad. This, as much as I hate to admit it, is almost as bad as the
endometriosis and all the pain and symptoms that went along with it. Different
but damn near as bad! Well, guess that's enough for now!

02/12/98-(19 months post TAH/BSO)

A lifetime of things have happened since I wrote last...can't go this long
without writing, too much to remember....and I'm memory challenged remember?

How things can change in a little over a month..maybe its just me.

Since I wrote last, and in this order, I have separated from my husband,
due to that very emotional distress and just as I was taking my last Paxil,
to get through the first week when I had to leave with my daughter (16),
stay in a motel and with relatives and still go to work everyday, I asked
the psychiatrist that had been treating me for the depression to prescribe
something for anxiety so I could make it through the week as I was not coping
well, ending up in tears several times throughout the day, can't hardly carry
on at work like that! I took xanax for that week, stopped it on the following
Saturday since I did not have to keep up a brave front from being at work,
rented an apartment and planned on moving in that Saturday (Jan. 23rd),
instead, I became so ill I was confined to bed, for four days.

That Saturday morning, arriving at my former residence, I didn't feel
well at all, felt overcome with exhaustion, weak, headache, nausea and having
strong heart palpitations. I laid on the couch for a bit, hoping it would pass
but only grew worse, by late afternoon I was vomiting and having all the other
symptoms, barely able to stand. At my daughter and mother's insistence, I
called my family physician for advice. At that point, I thought it was due to
withdrawal from Paxil and stopping the xanax suddenly (have never taken any
type of anti-depressant or anti-anxiety medication in my life).

The doctor on call said my theory sounded likely but advised me to go to the
ER to be sure I wasn't having some kind of heart problems, he was calling
ahead so that they would be expecting me. I wasn't even able to drive myself.

The ER doctor came in with a big ER attitude, ordered an EKG and blood work.
When he heard I had been on anti depressants and anti anxiety meds, I noticed
a subtle change in his attitude, a condescension that offended me even as sick as
I was. Four hours later, I was sent home with the diagnosis of anxiety and
palpitations and told to resume the xanax over the weekend.

I was afraid at that point that it might have been the xanax that made me so
sick and could not bring myself to put another one in my mouth, even with the
thought that it might make me feel better. I remember taking one of those little
white pills out, setting it on the desk in front of me and staring at it
for a good five minutes, I cut it in half then a fourth and considered
taking that, but the thought ran through my mind, that if I put another one
of those pills in my mouth, I would never be able to get off of them, I
just could not do it. I went to bed instead.

The next day, same story...not able to rise out of fever....severe
nausea, some vomiting, dizzy, palpitations, could not hold down any food or
water even. If I tried to get up or even talk with anyone the symptoms
worsened, so I laid in bed all day Sunday, very still. Monday was much the
same, I had to protect myself very closely from getting even the slightest
bit agitated or upset, which was hard to do with my husband there and the
fact that I had rented an apartment and we were separating, so again,
Monday, I laid in bed all day, very still. I also noticed during this time
that my sense of smell was very acute, normal odors were magnified x5,
smelling almost anything made me sick, something that has not left me totally
even today. Tuesday I continued to rest,managed to even get a couple of
crackers and water down, still stayed in bed most all the day and rested.

By Wednesday, I was able to hold down my first solid food since
egg and cheese biscuit from Burger King :o) Still weak, tired, dizzy, and
having strong palpitations, I called my family doctor to see if I could get in
to have her check me out. They told me I could come in that day at 3:30.

You might be wondering at this point why I did not consult the psychiatrist
that had prescribed me the drugs to begin with. On weekends and after hours,
you cannot get the man on the phone, you get to talk to his "assistant", a
woman who works the front desk in his office who is not even a nurse. She
handles all his phone calls, screens them, relays what you need to him
then calls you back and tells you what he said ! I wanted to talk to a
doctor and get advice directly from a doctor.

The Wednesday visit with at my own family physicians office was a nightmare. I
was still too dizzy and weak to trust myself driving so my husband took me.
Due to heavy traffic, we arrived seventeen minutes late, they had put up a
new memo at their front desk stating if you were more than 15 minutes late
you would not be seen and would have to reschedule.**Mind you I
had never been late to an appointment at their office before and have sat in
their waiting room and/or examining room oh so many times for 30 minutes or more !

The "receptionist", irritated, told me that I would have to reschedule my
appointment, my husband became upset and told her how sick I had been and
couldn't someone see me (there are four other doctors in the practice). She
came back and said the senior doctor of the practice would see me. Well, I
guess I messed up their day ! The senior doctor an older man, came into the
examining room, and said "So, what's the problem?", he listened to the events
of the last week and my symptoms, sat down with my chart folded in his closed
arms across his chest and said he didn't know why I didn't go back to the doctor
that had prescribed me these drugs and sort these things out with him. My
husband became upset at this and said "Sir, we are here for help, can you
tell me why you are closed off to us when we are here for help?" (the doctor
was sitting in a chair, his back against the wall, arms and legs both crossed),
the doctor became very angry at this question, asked my husband who was he
to be asking about the way he was sitting, he jumped up, practically yelling
and snarling and told my husband if he didn't like the way he was
sitting then he could leave, and threw the door open. I got very upset at
this exchange (this was just the kind of outbursts I was trying to get away
from), got down off the examining table, told them both I could not take this and left...

I could not take it at that point, as badly as I wanted to be seen by the
doctor to make sure I didn't have some wacky heart problem going on, I
could not take any more upset at that point. I headed straight out the front
door and walked to a corner in the back of the parking lot, sat on a
curb, cried a little, did some deep breathing and got fair control of myself.
I didn't know where my husband was at that point and couldn't be concerned
with it, I walked to a convenience store one block over and was going to call a cab.

I am still astounded by that doctors unprofessional behavior. That he could
not rise above his personal emotions and see to it I got some medical attention.
He could have calmly asked my husband to wait in
the waiting room if he felt him an obstacle.

All this happened 01/27, I had no further contact with the doctors office,
wanting to concentrate on getting well and spare myself any conflict so that
I could recover. I know that I came as close to a nervous breakdown as one
gets without succumbing totally. It's funny at one point during that
weekend, I thought to myself...hmmmm, maybe I'm having a nervous breakdown.

Soooo, to continue this ugly saga, three days ago, my daughter called our family
physician because she is experiencing symptoms of depression again, she
had also resumed taking birth control so I was concerned that it could
be from that and wondered if it might subside or needed medications again.
At our last visit we both told the doc we wanted her to treat us for depression
if we needed it, not wanting to go back to the psych. she agreed. After
two days with no return phone call, I called on the third day.

My doctors nurse (whom I've always liked and had a good relationship with
or so I thought), I explained my concern about my daughter's recurring depression,
she then told me, we can see her but you know we can't see you anymore
right? I was dumbfounded (gee....never been rejected by a doctor before,
this is new!) I told her no, I didn't know that, she said didn't you get a letter,
I told her no, I did not
and ask her if this was because of the visit with me and my husband, she said
yes it was. I told her that was very unfortunate because the senior doctor
(who is not even our primary doctor!), had indeed acted very unprofessional
and inappropriate, she said, I know but he owns the place.

So, there you have it, not only did I not get any medical treatment or
compassion from my family physician but they are now dropping me....I was
and still am very upset and angry. I really liked my female family doc, been
going to her for two years, she and I had been working, chipping away at
my post hysterectomy problems, I had finally gotten her thinking turned
around to a natural hormone replacement therapy, we were making progress.
My daughter liked her too.

I wrote them a pretty scathing letter (hell hath no
fury like a Leo woman and momma scorned ! :o)

Maybe it will make them think and hopefully not treat anyone else needing help
that way....probably not made me feel better ! Also sent a
copy to the psych., we had been seeing, the HMO Grievance Board for my
insurance and the Medical Quality Assurance organization in my state.

Next Update this weekend: How I'm doing now and what I've been trying health wise
since 01/04/99, click on Journal 2 below.

Main Page: Hysterectomy Awareness

Research & Data Collection Let your voice be heard !

Recovery Journal 2

Recovery Journal 3

Recovery Journal 4

Recovery Journal 5

Recovery Journal 6

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