Recovery Journal 5

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In five months, I will be 4 years post TAH/BSO,(removal of uterus, both ovaries,
fallopian tubes and cervix) due to endometriosis,
adhesions and chronic pelvic pain.

I am still recovering! Thankfully, it is not this long and difficult for
some women, but it is this long and difficult for enough women to continue
to support the need for this website.

My recovery now continues with finding the right *mix* of hormone replacement
for me, which I have found in the sublingual nhrt (bio-identical hormones)
through College Pharmacy.

Hopefully, this may be the last page in my *Recovery Journal*

02/18/01

Started regular refill of Bi-Est 3.75, Progesterone 100mg and dhea 12.5,
all in one sublingual tablet, dissolved under tongue, 2x daily again on 01/09
and just received second refill on 02/09/01.

All the *weird* skin things I was having have cleared up, no more cysts, cystic
acne, etc. so had to be from the testosterone. Fatigue is improved, and
fibromyalgia symptoms are still very much diminished unless I have a lot of
emotional upset, or neglect my physical, nutritional or emotional well being.

Libido is still not what it was.

Also on 02/09, I began using Testosterone thick gel from College pharmacy,
it is supposed to help with increased vaginal sensations and dryness,
and I added Pregnenolone, 50mg 1x daily.

I have a few friends that are long term nhrt users that use pregnenolone and
they say it has helped them a lot with energy. Pregnenolone is a precursor
to other hormones and is should enhance the actions of other hormones taken.

Will update on how I am doing with new additions.
Feeling very well so far, and as always praying
for better health and solutions for us all.

03/29/01

Since I wrote last, I discontinued using the pregnenolone,
approximately two weeks ago.

After using it approx. 3 weeks, I began noticing increased swelling in my
legs and ankles by evening, I also had occasional heart palpitations after
taking my evening sublingual dose which I attributed to the pregnenolone
since I have never experienced either of these before using the pregnenolone.
I have not had problems with either since discontinuing the pregnenolone.

I am due for my third refill on the Bi-Est,Progesterone and dhea
all in one sublingual tablet taken twice daily, from College Pharmacy.

I had to scrimp on my prescription a little this month due to finances,
so I ran out early and used some of the transdermal cream I had leftover....

So....with combined reduction in nhrt, and increased marital and job stress
again, I find myself in this last 2-3 weeks with increased fibromyalgia
symptoms once again. I also was not able to see the massage therapist I have
been seeing the last two years much this last month so I'm sure that has
added to my body's *stress*

*sigh*

It seems like it doesn't take much....still....to reactivate my fibro symptoms,
at the same time, when I look at the paragraph above, the last month has
been a bit stressful in several ways.

My libido without the testosterone in my nhrt is pretty non existent, at
least sex isn't aversive, I just don't think about it much :o(

Hopefully now that finances have improved and I'll be back on my regular nhrt,
back to the massage therapist, things will be improve once again.

04/11/01

Feeling fairly well, still low libido.

Have had mysterious appearing joint and muscle pains this last month, right
knee just started hurting one day after work and
hurt for about a week, nothing I did to cause it.

Woke up one morning about a month ago with an extremely painful left
trapezius muscle, that took three weeks to go away!!! I was not seeing the
massage therapist much the in March so perhaps that contributed to it.
It was sooooooo VERY painful, I could not even turn my neck for a few
days, and it hurt, and hurt across the top of the back of my left shoulder
along that muscle and going down into the shoulder sometimes, thankfully,
it is finally gone, last night it felt like my right trapezius was going to
start hurting, aaaaaaacccccckkkkkkk!!!!! I also had my low back just start
hurting one day right after I had gotten my massage, I got up off the table
and my low back felt like it was broke in two, later that night I could barely
walk, same thing the next morning, I had to call off work that day!! not good....!

I wonder if the massage therapist could be setting off trigger points? I
saw some thing about that once, need to check into it further.

That is what happened when I first got my friend fibromyalgia, I had all
these mysterious appearing joint and muscle pains, appear, with no apparent
cause and then eventually disappear, go from one side to the other. I think
all the stress, all the changing around of my nhrt over the last month and
a half has set my system out of whack again, am back on the sublingual as
before now so hopefully all this will subside, such is life with fibromyalgia!

Stress in my personal life has died down for now?!?
so that should help too, hopefully it will last.

Getting ready to do saliva testing of estrogens, testosterone, progesterone
and adrenals with Dr. Bivins, going to do the test this Saturday,
it should be very interesting to see how it all comes out!

Over and out for now.

07/25/2001

It's been too long again since I've written, I've always got myself spread
to thin it seems and as usual, so much has happened since I last wrote.

Catching up to where I left off....

I'm feeling quite prolific tonight, or long winded and am liable to go on
about many things....hormones, life, fibromyalgia, who knows!!

I am sorry to say that since I last wrote, my fibro symptoms have worsened
again. I attribute this to several factors. I have not taken my hormones
consistently for a few months, I know this has an effect. I have also
not been to the massage therapist in over two months, this has an effect also.
My hours at work have changed and I am working all
kinds of crazy hours,
4p-12a, 12p-8p, and a few days, 4:30a-12:30p. I am sure this has disrupted
my sleep patterns and contributes to the pile. Last but not least,
the summer here in hot, unbearably humid, S.W. FL. Paradise to some
a curse to others. We have gotten a lot of rain recently which we
desperately need, but the rainy weather and climate exacerbates my symptoms a lot.

It has been difficult and disappointing coping with renewed worsening of
fibromyalgia symptoms after a period of very good improvements, I guess
I thought I was out of the woods so to speak, should have known better!!
I am thankful for the fairly long semi remission that I've had.

I received a mysterious email today, one sentence "You may have
CFIDS- chronic fatigue immune disorder syndrome. Check it out."

I sent a reply asking the writer what made them think so. Did some
reading on CFIDS, hell, I've got 90% of the symptoms, I'm not sure where I see
that it differs so much from fibromyalgia and I think I remember reading that
both conditions can sadly co-exist in the same body :o(

I hate to report that I am not feeling well. I don't want any of you
out there to be discouraged by it. I do not attribute it to any ineffectiveness
of BHRT (bio identical hormone replacement, aka: nhrt-I think bhrt is
a much more appropriate name). Quite the contrary, I am still very pleased
with the sublingual bhrt from College Pharmacy. This form of hormone
replacement is by far the most effective form of hormone replacement I have
used in the four years since my tah/bso (four yrs. this past July 17th btw).

As I mentioned, I recently had my saliva levels tested of estradiol,
progesterone, testosterone, dhea, melatonin and 4 cortisols.

Results were as follows:

Estradiol-2.4 pg/ml
(ref. range for post menopausal-0.5-3.0)

Progesterone-114.8
(ref. range for post menopausal-5.0-95
physiological range-100-500)

Testosterone (a.m.)-36.8
(ref. range-female a.m.-20.0-60.0

DHEA-1.9ng/ml
(ref. range 2.0-10.0)

I will be increasing the dhea in my sublingual since that is the only
level that was not within normal range, and was low. It is possible I may
also increase Bi-Est at some point, it was discussed that even though my
levels fall within normal range my symptoms indicate more Bi-Est might be needed.
I was reminded that we don't just go by lab values, we have to look at the
whole picture, labs and symptoms. WISE!!

I have found, and I think this is good advice for anyone using compounded
bhrt, that it is best to only make one change at a time to the mix, then
to wait 3-6 weeks, before fully evaluating any changes resulting from
that change. If you are going to change the form of your bhrt/hrt, only
change the form and wait, don't change the form and increase, say, Bi-Est
at the same time, or increase Bi-Est,and Progesterone at the same time, then
if you have any negative symptoms or improvements,
you will not know which change is responsible.

So, for now, I will be increasing the dhea, my new prescription should
be arriving tomorrow. I will give it 3-6 weeks to evaluate the change, then
decide if additional adjustments need to be made.

I am hurting unmercifully these last few days. Joints, soft tissue,
even my eyes feel sore :o( I couldn't get through the day at work without
Judicious use of pain medications. NSAID's (ibuprofen, advil, etc.)
do absolutely NOTHING for this pain, I have to laugh at the commercials
for this stuff. (Have to laugh at something!) I am exhausted once
again. Thankfully, I think I at least know the irritants and with rest
and careful living I can hopefully lessen the
symptoms and pain
that my mind has become so crafty at ignoring until I am near knocked down.
(Comes from years of being a single parent and having no choice.)

I am rather depressed because in 4 days, I will be 40. Yup! the BIG 4-0*
I have convinced myself that the 40's were going to be the best years of
my life because the 20's and 30's sucked! (except for my daughter :o)

Sheeeesh!! A woman deserves at least one good decade in life doesn't she??

Y'all know me. Never will I give up.

Be well and write if I can help

08/03/01

More fun and games!!!
Yeeeehaaa...it never ends...hey! I still have my
sense of humor...without it I would be sunk!

I began taking the increased dosage of dhea, on 07/25 therefore,
my sublingual bhrt now consists of:

Bi-Est-3.75mg, Progesterone-100mg, and DHEA-20mg, all in one sublingual
tablet, dissolved under the tongue, twice daily.

It will probably take anywhere from 2-4 weeks before
I notice any changes from the increased DHEA.

I am also taking GynoFem from College Pharmacy, a multi-vitamin and
mineral supplement with calcium that I know I need and have not taken for
fear of recurring kidney stones!! I am taking 1/3 of the recommended
dosage right now to be on the safe side. This is a dilemma if one has
had kidney stones (and the unbelievably excruciating pain that comes with
them!!). Since we were not able to catch my little stone/s, we do not
know the cause, therefore, not sure if the calcium will be a problem or not.

I'm still weary with not much energy, and fibro pain while not at it's
worst, has definitely been more over the last few months, and for the
many reasons I mentioned previously (stress, marital stress financial
stress...etc!!) I don't know who I am kidding thinking I can
keep my life all calm and controlled to try and control these fibromyalgia
symptoms and flare ups. I truly believe I would have to live in a fairly
stress free environment and have plenty of time to relax and take care of
myself and I just don't think that's ever going to
happen in this lifetime of mine!!!

What happened to the old days when they used to send you to a sanatorium
or something!! Maybe I should chuck my so called life and go live with my
mom for 3 or 6 months. Sometimes I do feel like if I could get enough time
with no stress from work, finances, relationships, give my body, mind and
spirit some down time to rest, relax and heal that it just might help.

I'm a' dreamin again!!

I have to go to my regular M.D. for a physical in a few weeks, they can't
continue to prescribe me medication for pain without that. I called in for
my prescription refill last week and someone from the doctors office
called me back and said we called you and told you we can't prescribe you
anymore until you come in to see the doctor.

Not a soul from that doctors office called me and told me that!! and I
told her that, so, she said well, we will refill them this time but can't again
until you come in for a physical, I said "Great! I need one, and I need
a mammogram and bone density test too!! I have just not come in because of
not having insurance and couldn't afford it.

You could just hear the snideness in her voice. I suppose they think
that I'm a dope fiend since I need pain medication on a regular basis.

*sigh*

I never used any pain medication in my life! Not through a bulged disc
in my low back, not through endometriosis, not through a lot of things
I've had happen in my life. But some days, I would not be able to work without it.

That's why I know this is from fibromyalgia or something like it.
Chronic fatigue? maybe a combo of both?

Whatever it is, I know it was brought on by the loss of my ovarian hormones,
and hormone depletion that came to a crashing culmination of a grab
bag of perplexing symptoms that can be shared by several different things.

Well, that's all for now, it's getting late and I
should get some rest.

Will update on how things go with the DHEA increase as it progresses.

Be well everyone :o) *hugz&blessings* from me

~10/15/01~

Greetings!

It's been almost three months now since I've been on the increased DHEA.
No problems, no negative side effects. Improvements have been subtle, there
but subtle. Slight improvement in fatigue, libido and fibromyalgia pain.

The humid weather in Florida wreaks havoc with my fibro pain!!!!

My pharmacist and I had discussed increasing my Bi Est at the same
time we talked about increasing the dhea. I did not want to make two
changes at one time, if you do and you have negative side effects or
changes, OR positive effects, you're not going to know the source and for
me it is important to know the source, so I chose to try the increase in
DHEA first. I am still contemplating an increase in Bi Estrogen and
for some reason am hesitant to to do so. Even though my last saliva tests showed
estradiol levels to be right in appropriate range, they were on the low
end of the range and it was thought that an increase in Bi Est might alleviate
some lingering symptoms. I'm still contemplating that change and have
not decided yet. I just go a refill so may decide to make the change next month.

The last two months have been very stressful, for us all and added stress
for me personally from finding out my 14 year old niece has cancer, to my
husband threatening suicide (he is now on anti depressants and doing
better, to accepting an Asst. Manager position at work thus experiencing
increased hours and responsibility.

I have been depressed and fatigued and having a a difficult time with
some of these traumas. No amount of nhrt can fix extreme life stress and
the effect it has on our psyche and body sometimes!

In light of all this, after much research, I requested a prescription
for Wellbutrin SR from my family physician, she concurred and I have
been taking it for only a week now. I wanted to try it for several different
reasons which I will explain in more detail tomorrow, and tell you all about
the excellent visit/physical with my family doctor.

Over and out for now..off to work in a few.

Blessings, peace and good health to all :o)

01/06/02

Happy New Year!

Hard to believe another year has gone by! In a few weeks, it will be two
years since I started the HRT-NHRT discussion group at Yahoo Groups. It
was Onelist when I first started the Group, then about a year
ago, Yahoo Groups took over. I started the group as a place of support
for women pre and post hysterectomy, and for discussion of hrt and nhrt.
I think it has been a good source of support.

At last writing, I left off talking about beginning Wellbutrin SR. I am
still taking it, so it has been almost three months now since I began. I was
going through a lot of family stress at the time and feeling like things
were piling up and I was not coping well, not coping and depression were
my main reasons for wanting to try Wellbutrin, along with the hopes that
it might help with the chronic pain of fibromyalgia, weight loss, and quitting
smoking, all of which it is reported to possibly help with.

Depression is the only thing it has helped with for the most part but for
me, this is a good thing and in turn helps my fibromyalgia as extreme
emotional upset exacerbates the fibro pain and symptoms. I had more
emotional upset around Christmas time, and was upset, but able to move past
it as I was not so able to do back in Aug., and Sept.

I have also changed the mix of my nhrt, I went ahead with the increase in
Bi-Est, at the same time, reducing the progesterone to half the dose as my
compounding pharmacist mentioned progesterone could add to depression.

My current dose is:
Bi-Est-5mg
Progesterone-50mg
DHEA-20mg
All in one sublingual tablet, dissolved under the tongue twice daily.
I began the new "mix" on 12/04 so it has just been a month, I've found with me,
it takes anywhere from 30 - 90 days to feel the full effect of a
change in medication. So far, so good. Some days I am still so very tired though,
tired to the bone. My fibro symptoms for the most part still remain improved,
although some days, I wake up with pain in a new or different part of
my body and still marvel how one can just "wake up" with new or different
pain/s than one went to bed with!! I do feel less depressed and just this
last week have felt a bit of a resurgence in my libido :o)
Always happy about that *smiles*

That's about all to report for now.

Please feel free to write - let me hear from you,
and let me know if I can help.

09/27/02

I surely didn't mean to go this long without an update!

Not a whole lot has changed since I last wrote.

Well, I guess that's not entirely true! I stopped taking the Wellbutrin SR
back in March, I was feeling pretty good and I have
to take enough medication on a daily basis as it is.

I did a two month trial of T3 therapy, the first month went pretty well
the second month my dosage was increased and I started having heart
palpitations and discomfort in my chest so I stopped it. I felt real
good at first but the positive benefits tapered off and the
palpitations worried me so I stopped it. I may try it again some day.

In July, my pharmacist, Pete Hueseman began working at his own
pharmacy (instead of at College Pharmacy), in partnership with
his son Paul, and another Co Owner, Brock Smith, Pete's new pharmacy is:

Bellevue Pharmacy Solutions

Pete has been the backbone and source of knowledge and expertise at
College Pharmacy for bio identical hormones and hormone loss and
imbalance symptoms. I am very excited about this change and
Pete's new venture and wish him all the success in the world, he
has worked tirelessly for years helping women regain hormone balance.

Pete is very caring, refreshingly candid and intuitive and takes
the time to help anyone trying to achieve hormone balance or to find
the appropriate hormone replacement for them, he has helped
me more than anyone in the five years since my tah/bso.

I moved my prescription to Pete's new pharmacy with no hesitation.
The sublingual tablet from Bellevue is even better than the one from
College, they are firmer with no breaking apart.

My hormone "mix" has changed since the last time I wrote as well,
I dropped the progesterone, to see what happens without it,
I have taken progesterone for four years since I first began using
nhrt and it is the only component of my mix of hormones that I
have never changed, since weight gain and mild depression have
continued to be problems and too much progesterone can contribute to
these I thought I would see how I did without it and I've once again
added testosterone to my mix, a pretty small dose but, without it,
I have NO libido at all! No desire for sex, no sexual feelings/fantasies,
zip...and I usually have a fairly healthy libido so this is something
I definitely miss in my life and being. The addition of testosterone again
has helped me to feel like my old self in that regard.

The thing to remember is different hormones react differently in our
bodies, we all have different pre existing hormonal make up, different
body chemistry, etc., the BIG KEY to hormone replacement is
finding the right mix of hormones at the right dosage/s for each
of us as individuals, just because I need testosterone doesn't
mean someone else does, etc.

My current hormone regimen is:
Estriol-2mg/Estradiol-1.25mg-in one sublingual tablet 2x daily
Testosterone-.625mg in one subl. tablet 2x daily
DHEA-50mg capsule-1x daily.

I feel good on this. I've been on this "mix" since July. I notice
small improvements in specific things with each change we try,
or not feeling well with a change then we make adjustments.

With this change, my libido is back, I've noticed little to no
depression, energy is ok, fibromyalgia pains are the same for the
most part, exacerbated if I let myself get stressed emotionally,
physically, nutritionally or hormonally, and I've lost a few
pounds, my appetite seems diminished. I'll give it another month
or two even before I make a final determination on how I'm feeling.

That's all for now, let me hear from you :o)

12/15/02

Wishing a very Merry Christmas
Happiest of New Years, Best of Health!
and Hormone Balance to All~

I'm sick!! :o(
waaaaaaaaahhhhhhh

I have the changing jobs sickness!! A year ago when I changed jobs, I got sick!
Too much stress!?! At least it should be over before Christmas!!
I have the old head cold, sneezing, runny nose, that started
with a sore throat thing, guess it is that time of year as well.
Terrible to be sick at Christmas time! I'm sure this will be over before then.

Now, to answer Brenda's question-(thanks so much for inquiring Brenda!)
She asked how I was doing with no progesterone, here's what I think.

I just commented to my mom the other day (after a long night shopping),
that I did not feel like myself, that I felt out of sorts, kind of "disjointed",
and I think it could very well be due to not using progesterone, so I'm
very glad Brenda mentioned it. She says she feels more balanced using
progesterone, and it is the hormone said to help with "mood" and sense of well being.

Time to add some progesterone back into my "mix" and see if it helps me feel
more balanced. I stopped using it in July (and yes, it takes my body that
long sometimes for the effect of a hormone addition or subtraction to feel
the effects), I have not noticed any less depression, nor have I lost weight
as a result of not using progesterone which was the original reason for
stopping it to see if it made a difference since that was the only component
I'd never changed in my 3&1/2 yrs. on nhrt.

Other than that, I am still feeling well and hope you all are too!

I hope everyone has a wonderful Christmas filled with
love and joy and the Best in the New Year!!

06/10/03

Once again an update is long overdue! The craziness that
is my life doesn't seem to slow down too much.

I still never started taking any progesterone so now I've been a year without it.
I can't really say I notice "missing it". Despite April being a really tragic
month (my nine year old Australian Terrier was hit by a car and killed, three weeks
later my three year old cat got sick and died and two days after that my computers
hard drive failed-it was still under warranty thank goodness so it was covered but
it took Compaq almost a month to get it fixed and back to me! awful being without
a computer for a month when I work on it daily!) So despite all the stress and
heartache, I can't say that I feel any more depressed, but, I do feel kind
of "flat" and I noticed today that "feelings" I think
I should be feeling I'm not, if that makes any sense! Perhaps I am depressed but
don't realize it. I seem to have a difficult time responding to people, I've
had difficulties recently getting along with my manager and really don't have
the patience or desire to try and resolve it of course some of that is just
relative to the situation and what it is, she thinks I'm moody and have problems
communicating and I feel the same way of her. Oh well, you can't please all
of the people all of the time and I keep trying to just work hard and treat
everyone with respect and in a professional manner that's about all I can do.

I'm happy to say that my hormone supplementation remains the same, I'm
still using bioidentical hormones from Bellevue Pharmacy
and am very happy with the sublingual tablets, they truly are the perfect
delivery form for me, easy, no fuss, no muss, place one under your tongue,
it dissolves quickly (2-3 min.) and that's it! The most effective form of
hormone supplementation I've used and Pete and the staff at Bellevue are
unsurpassed for knowledge, service and genuine caring.

My "mix" is still: Estradiol-1.25mg/Estriol-2 mg (both in one sublingual tablet
taken 2x daily, Testosterone-0.625mg-one sublingual tablet taken 2x daily and
DHEA-50mg 1x daily. In addition to that, I've really been earnestly taking my
calcium daily (for a long time I was afraid to take it because of the kidney
stones I had 2 yrs ago), a good multi-vitamin, I've recently added digestive
enzymes (because I have a lot of gas and don't feel I digest my food properly and
I've recently started having mild heartburn which I never have!)

I'm about to get my hormone levels tested soon, when I can afford it (I'm still
poor and still the only one working in my household after my husbands back injury
3 yrs ago), but I'm wondering what my testosterone levels are, libido's not all
that great, low testosterone could be affecting my mood as well, the main reason
that I question my testosterone levels and this will sound funny is before when
I was taking testosterone I always got one long (not really long, only about 1"
maybe) black hair near my belly button (sounds pretty goofy!) but I don't have
that all of a sudden I notice so I'm curious where my levels have gotten too,
it's been quite some time since I had them checked
so I suspect it's time and will update when I do so.

Fibromyalgia is still hell! I never know where I may hurt from day to day. I was
just marveling yesterday that the hip pain I had in one hip for at least a year
has disappeared only to be replaced by pain in one shoulder, the pain seems to
settle somewhere, come on mysteriously then leave one day as quickly as it came.
The summers in hot, humid S.W. Florida are murder and bring on plenty of sinus
headaches and aching all over my body, sometimes I feel like every tissue in
my body hurts and still have a lot of tingling in various places. I've got
to go see my primary doctor next week and with no insurance have no money
for all the testing they will surely want to do, it will have to wait.

Guess that's enough of an update for now. Did I say I was doing pretty good?
Hmmmm..now that I've written all that out I'm not so sure!

Be well all!~

Onward!

Recovery Journal 6

This page first created February 18, 2001

2001 Jeannah McElroy


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