Women’s Stories

There are many additional stories on the RhythmicLiving Yahoo Discussion group that have accumulated since May 2005.

The stories published here were collected in May of 2005.   Women continue to arrive in the Rhythmic Living discussion group saying they were on or are on the Wiley Protocol and have become sick.   Some women report doing well on the Wiley Protocol, but when we examine their dosing routine we discover that they are in fact NOT on the high dosing Wiley Protocol, they are on individualized rhythmic BHRT and they mistakenly believe it is the protocol.

Women are writing follow ups and they appear in the discussion group.   For others, the subject is too painful and too shame provoking to address.  The memories of the Wiley Protocol are a disturbing chapter in their lives and many are still tumbling from the consequences of the high dose protocol and trying to find balance.  The Rhythmic Living discussion group of over 400 members addresses these stories and members’ efforts to find their way to a rational approach to BHRT.

Many women chose not to reveal their names as the climate for reporting negative results has been less than welcoming.

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Scroll down to read the stories.

Aileen 67 improved migraines, suffered immune  suppression

Belinda, 45 quit after 3 months, 3 months later still suppressed immune

Christine, 67 heart pain, acne, immune suppression, constipation

E-Woman developed linea negra, many problems, muscle loss, etc.

JanDebra demonstrates the complexity, doctor withdrew support for WP

LG – stopped the WP My IGF-I is below reference range.

Lavelle – immediate problems, off WP and trying to recover, endocrine messed up

Linette, sore breasts, kidney pains, constipation, kidney stones

M’s Hormone Story -halted her trial

Ms. E. likes E, off WP, suffering anxiety not related to stress

Maria, 37 “it seemed like I traded one set of symptoms for another.”

Nelina, 38 WP 3 months, gained weigh, months later still unwell

Paulina, 57 Couldn’t handle the progesterone, now recovering

Susan B. Antonio hair loss, muscle wasting, bone loss, depression

Valerie Was put on double E and double again of the WP dosing

Darlene, 56 short trial of WP, demonstrates P overdose with less P than WP. She has a good starting list of progesterone overdosing symptoms.

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Aileen

(suffered immune suppression on Wiley Protocol)

Age 67

Menopause – 14 years

Reasons for starting BHRT – Osteoporosis (history in family). Regular annual bone denistometry was indicating osteopenia & osteoporosis. I had been on Fosamax for 8 yrs, was beginning to find GI problems uncomfortable, despite taking as directed.

I had been using Dr Lee’s progesterone program for 5 yrs, when I started on the Wiley protocol, after reading the book “Sex, Lies and Menopause”. I started WP in Sept 2004. My early profession was as a registered nurse on ER. I carefully followed the prescription as prescribed by the Wiley protocol. After three months I titrated to blood levels and to how I was feeling. Following is a month by month synopsis until I decided to quit the Wiley protocol. I kept a day to day chart and devised a numbering system of one to ten to indicate the levels of symptoms, i.e. breast tenderness: a ten is breasts swollen and painful, unable to lie on stomach, inflamed redness around areola extending outward 2 inches. (I had breast fed two children without problems).

I was extremely healthy for my age, 67. Walking, swimming, weight lifting, yoga, skiing…enjoying retirement with my husband of 45 years. I was rarely sick. Hardly ever had a cold or cough.

Sept 2004 – I have a history of classic migraine. On day one I had a headache. Took a Zomig (migraine med). For the first two weeks I felt energetic, but when I added progesterone my energy dropped to pronounced malaise. I was sleepy and lay on the couch a lot through days 15 – 28. On peak day I was up to 300 mgs, progesterone, BID as prescribed. My first period was on time, 5 days, and very heavy flow.

October 2005 – I discovered that my migraines were easing up. Whenever I had an aura, I could put a 1mg dab of estradiol on my neck or vaginally and the aura would disappear in about 10 minutes. Once again the progesterone phase was no fun.

November 2004 – The progesterone was ‘knocking me out’. But during the estrogen phase, I found I was thinking more clearly, I could pull up words from my memory that I’d forgotten were there. I became more articulate.

December 2004 – During the P peak I had a three day migraine and used several Zomig during this time. Once again I was disoriented, woozy and felt drugged. I also began to develop a dry cough. I increased Vitamin C which had always caught colds early. The cough didn’t react to Vitamin C. I noticed a little enlargement of the lymph nodes in my neck. The cough eased up in the E phase.

Jan 2005 – Feeling well on E. Started to titrate during the P phase. On day 21 I took the usual 300 mg BID but increased E from 4 line to 8 lines BID, as headaches were starting. My blood level on that day was E 660.1 and P 22.9. On Jan 14, I got the ‘flu’. I had had a feeling that my immune system wasn’t as strong as it used to be. After ten days the flu cleared up, but a cough remained.

Since beginning the protocol I had had some breast tenderness, yet something I expected from all the reading and researching I was doing. However, by day 12, peak E day, my breasts were swollen to a ten. I had to buy a new bra going from a B to D cup. On that day my labs were E264.4 and P .90. The breasts subsided after 12 days.

Feb 2005 – Things didn’t seem to be improving. I kept telling myself to try to remember how I felt before starting WP. The difference was that I had many more headaches. Other than that, I was happier and felt healthier before the protocol. The next P phase, I had a return of flu-like symptoms. I got a three day high dose antibiotic (first time in many, many years). It alleviated the symptoms. But the cough persisted.

Mar 2005 – I started titrating. I lowered the P by 2 lines and increased the E by 2 to 4 lines. This helped me get through the P phase. My lab on day 21 was E439 P18.30. I still had the cough. Asked doctor for another 3 day bout of antibiotics (this was really going against my method of personal health care). I couldn’t understand why the flu feeling was hanging on. I have such a healthy diet…never open a can, use fresh produce, organics where possible, no artificial things. Breast discomfort reappeared.

April 2005 – Discussions on rhythmic living yahoo group were helpful. I took a tally of the positive things that had happened while using the WP. Migraines were virtually gone (during E phase) compared to before. I had had a problem with one ear, which developed while living in the tropics 30 years ago. There was a feeling of pressure. Sometimes while hiking I would have a feeling of loss of balance. Hearing tests showed little hearing loss for my age. In August 2004 a laryngologist ordered an MRI, which was normal. In April I noticed that the pressure was gone. I then realized that it reappeared if I was feeling symptoms of being low on E. A line of E alleviated it.

But in P phase I was again reeling around and coughing. Lymph nodes were swollen. By this time I had had to up the E by 50% to keep the migraines & sore breasts at bay. If I you had asked me during E days how I was doing I would say ‘Great’! (I was on an E high…heaven!) P days though were a bummer. By this point in time I was beginning to be able to ‘read my body’. I could tell if I needed more E or if the P was too high. I decided to lower P by half. I had also talked with my doctor about this.

May 2005 – Day 21, peak day of P was again miserable even on lowered P – cough, headache, swollen glands. Quite a change from the week before on E when I was skiing happily with my family.

I did a search of the Internet. Lo and behold I found that a side effect of progesterone can be upper respiratory infection.

NATURAL PROGESTERONE

I connected with a doctor who has been involved with BHRT for several years. He is a well qualified physician with a large practice. He suggested I reduce the progesterone even more and will be helping me with my BHRT. I am no longer on the Wiley protocol.

October 2006 Update for Aileen.

Aileen continues to use estrogen patches.  She has not been able to tolerate progesterone.  She says her body is still cycling with the rhythm of the full moon calendar.  Her worst days are around day 21.  Her patches dry up more quickly and fall off during this phase.  A recent bone scan showed a return to osteoporosis.  During the initial heavy P detox stage Aileen could squeeze her leg where she applied her WP progesterone and several minutes later she would have pronounced symptoms of immune suppression, depression and sleepiness.  Recently she experimented with giving her depot area a ‘good squeeze’ and she still got similar results although not as pronounced as in the summer of 2005.

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Maria

This woman had medical training and reported as she would for a client.

37yo female began Wiley protocol in September 2004. Reports 3 periods with moderate cramping during first 6 weeks time span. Patient c/o pre-menstrual tension and anxiety. Reports increased libido and vaginal lubrication; especially during follicular phase.

October 2004: Patient increases E by 50% and adds 2 lines of P4 BID.

Rational: create more E receptors and hold uterine lining to avoid periods more frequent than q 28 days. Patient also hopes that P increase will lessen BT and anxiety. Instead reports symptoms of dry eyes and hot flashes.

Dec – in-person consultation with TS Wiley at support group

Jan -Feb: Patient continues with protocol. Reports confusion as to whether or not results were successful.

She states: “it seemed like I traded one set of symptoms for another.”

Reports frequent HA from roughly day 21-27, with most difficult coping on days 24-28. “Seems like my headaches start when I exceed 6 lines of E”.

April: Reports feeling bloated; particularly around her middle. Increased hair loss. Adverse symptoms shortly after applying even 2 lines of P (dry eyes and HF). Patient notes disappearance of libido and vaginal lube.

May: P reduced to peak of 6 lines on day 21. Slightly edgy with PMS.

Cycle length: 30 days. Bloating subsides and libido returns with menses.

Patient notes increased flow and cramps.

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This women had to stop the protocol as the use of P was getting unbearable. She is trying to move towards a sensible approach to BHRT.  After a recent massage she was later overwhelmed with symptoms and lost her ability to focus her eyes. We suspect that hormone stuck in her fat base came out of her tissues from the massage. She was told to go to the ER. More estrogen was the only solution to restore her vision and allow her to recover enough to go to work. She is suffering depression and pain.

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Valerie

Thank you so much for taking your time to help those of us that have tried the Wiley program. I am a smart woman, a stockbroker who does her own research and I thought this program might be the answer to menopause.

Like many of the other participants, I have been very sick on this program. I stayed on it for 5 months and then started to lower slowly the doses of everything. I am not going to list and reiterate all the health issue and symptoms that I have had. Others have said enough.

I personally spoke to Susie, and Steve the pharmacist many times. But I became suspicious when after intermittent phone calls, it seemed that the formula was always being changed and I was never notified. My symptoms would change month to month depending on what was done at the pharmacy.

My favorite story is the one where I was told to double my estrogen cream from the protocol and keep it doubled all the way through. Three weeks into this, on my own, I noticed that the pharmacy had also doubled my dose. I was on double, double the estrogen. I don’t even want to tell you how much estrogen I was on. [peak day estradiol 8mg BID =( 16mg/24hours x 2) = 32mg x 2 =64/mg This person was on 64mg/24 hours on day 12]

My doctor ( nurse practitioner) was on this program with me. I followed and did everything I was told, and kept notes regarding my symptoms, pain, etc. My doctor made a few calls when I complained, but I did the bulk of the work on this. Thankfully, I left this doctor and went to an endocrinologist who told me that I was on way too much hormone replacement and that I had all the symptoms of someone that was pregnant.

We began together to cut my doses back. It was hard. It has been painful. I am afraid to this day to use progesterone. I also kept attributing all my problems to my low-thyroid. I continued to use the creams from Steve, the pharmacist, until 10 days ago. It was during my final call, that I was told again that the formula had changed. That was it, the end of the San Ysidero creams.

I am now on estrace and at some point will begin to use a capsule form of progesterone. I feel much better on the estrace.

This is a difficult process, trying to get back to where you were when you began. It is painful, and I am sure not great on one’s body. It is also depressing. I am sympathetic to all who have tried this program believing that it might work. I do not believe that it can, will or is a healthy program to use. This would seem like a good 60 MINUTES story to be told.

I am thankful, I guess, that I didn’t continue on this and hopefully, that he damage to my body is limited. Time will tell.

If there are any useful suggestions regarding detoxing etc. I would be interested.

If you need any help, information etc., that would be helpful, you can mail be back. Thank you for your time and commitment to this effort.

Valerie’s September 2006 follow up report.

After I stopped the Wiley program, which by the way the doctor I was seeing at the time was also doing with me, I tried many things and saw many doctors.  Elizabeth Vliet, the guy down in LA., several nationally known endocrinologists, OHSU in Portland……..well, you get the idea.

I complained and continue to complain about serious muscle pain, red painful muscles in legs and arms, but mostly arms.

Backaches, dry burning eyes, bloating, serious weight gain. I tried adjusting every way I could my Synthroid and my estrogen and progesterone. These are the only things I use. To no avail.  I still have pain.  I do not seem to tolerate progesterone, in any form.  Cream, prometrium, vaginal….

I am currently on Vivelle dot patches and have been for some time.  I try to use tiny , small amounts of progesterone, remember the Uterus.  Progesterone cream in small doses helps me sleep, but during the day  it makes me dull, lethargic and creates pain.

No one, and I mean no one has any idea what to do about this.  I think they believe I am nuts.  So, I continue to work on this on my own, keeping diary like records so that I can recognize what causes what reaction.  I am determined to get this right, but it has been what, about 1 1/2-2 years since I stopped the Wiley program.

In July, I reduced my vivelle dot patches by 25% and tried to then add progesterone.  Although I felt lousy,  several good things happened.  The ridges in my nail beds disappeared quickly.  My hair loss went down to almost nothing.  I began to grown baby hair on my arms, legs, etc.  In other words, on some level I had, on my own, discovered a way to improve my metabolism.  LIke I said,  I am just banging away at this.  I try something and try to stay with it to see how it goes, unless of course it’s intolerable.

I do not know if this helps, but this is where it is.  I am actually trying to see how low I can get on the hrt. I have never been afraid or worried about using, but I just don’t feel well.  If I can feel better and use less in the way of drugs, it will be easier to see what it going on.

End of Valerie’s follow up.

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Susan B. Antonio

Another One Bites the Dust…

At the onset of menopause, I discovered the book Sex, Lies and Menopause written by T.S. Wiley. I began taking the Wiley Protocol as recommended in the book. For the first several months, it was wonderful. My symptoms all disappeared. No more hot flashes and mood swings. My hair was thick, shiny and healthy, my eyebrows were growing back in, my nails stopped splitting, I began to lose weight, etc. It was heaven for about 6 months…then, unknowingly I started to overdose.

After a while, I began to notice strange symptoms occurring during the second half of my cycle. Headaches, aching back, kidney pain, severe fatigue, muscle pain, tremendous weight gain around my midsection, breast tenderness…and an extreme amount of hair loss. These were symptoms I never had before. I spoke to people that were suppose to be knowledgeable within the SL&M camp, and the only answer I ever received was to “add more hormones”. I was told that I wasn’t taking enough. So, I added line after line after line; frightened to lower my doses for fear of immediately being ravaged by cancer, which is what I was told was going to happen if I adjusted my doses even a squeak. My symptoms got worse and worse and worse, as did my fearfulness. I could barely function. What’s wrong with me? Is this how I have to feel for the rest of my life?

I didn’t put two and two together, until another woman close to me told me that she was losing handfuls of hair during her Progesterone phase of the WP. This woman, who is much younger than I, and had thick beautiful hair, showed me her hairbrush full of the hair that she was shedding. She also complained of severe mood swings, terrible PMS, horrible menstrual periods, weight gain around her middle and headaches. We both became alarmed.

Upon the advice of a compounding pharmacist…by the way, not the one that is so-called “Wiley Certified”, but one that actually knows what they are doing…we both stopped the dangerously high doses of hormones, especially Progesterone. We have cut our Estrogen down to what feels good and our bodies find as acceptable levels, and are taking no more than 2 lines b.i.d. of Progesterone on days 14-28.

The other woman, who was taking the Wiley Protocol for just a short period of time, bounded back almost instantly. She is now taking a few lines of Estrogen, and a line of Progesterone, and feels great. Her symptoms are gone.

I, who had been taking the Wiley Protocol doses for nearly three years, have not rebounded quite so quickly. My hair loss is so severe that I’m embarrassed to go out in public. I might buy a wig until it grows back. I am severely depressed. I can barely sleep because my bones ache so badly. I have experienced bone loss and muscle mass loss. I have gained a tremendous amount of weight in my belly, and now have a round, puffy face where once existed a heart-shaped, contoured face. I have headaches I never had before and tremendous anxiety.

Upon painstakingly researching the above problems, I have discovered that I am suffering from an accumulation and overdose of Progesterone. My homeopathic doctor and my compounding pharmacist concur.

I no longer use the Wiley Protocol doses and actually believe they are dangerous. I would not recommend using the Wiley Protocol to anyone. I believe that a much lower dose of Estrogen and Progesterone is safer.

I caution everyone reading this not to fall prey to the “fear factor” that is being perpetrated by other websites and message boards. I was once told by a healthcare practitioner, that if you take a test group of 100 women and give them hormone creams to apply, they will each balance their own hormones without interference or advice from anyone. That is just what I intend to do. My body will talk to me…this time I am going to listen.

Susan B. Antonio September 2006 follow up

As for me, I am down to taking a minimal amount of E and P.  It is still “Doctor” Wiley’s Estradiol dose, but nothing even close to what she recommends.  I only take 4 lines of E once a day…and 1 line of P on days 14 - 28.  I cannot do more without severe side effects.  I got SOOOOO sick on her protocol…I can’t believe there are still women out there who use it, especially after all this time.  There must be a lot of bald women out there now from all that P!!!  lol  Good for the wig manufacturers.

Like you, I’m still trying to detox.  My hair has not yet recovered completely…thin and wimpy now since Wiley.  Funny you mentioned my teeth because I never had a problem ever…a few fillings that’s all.  Teeth like rocks…until Wiley, that is.  Now I have a molar that cracked in half and my teeth are terribly sensitive.  My bones ache like crazy and I never had that either.  I know some things can be attributed to “age”, but I swear the WP poisoned my body.  What a fake…what a phoney she is!

I read something recently in either a professional mag, or somewhere else can’t recall, that was speaking about massive doses of E and P for older women and how our cells cannot take it because they just don’t have the receptors that we had when we were young.  Pouring huge amounts of E and P into them will not make them young with young receptors no matter what.  I will look for the article and email it to you if I can find it…it was very interesting and made sense.

I am suffering terribly from what could be bone loss now…either that, or it is a kidney problem.  My left lower hip, near the bottom of my kidney hurts like crazy…on my body, because I’m 5′0″ tall, there isn’t much room between my ribcage, kidneys and my hips!!  No waistline to speak of!  hahaha  So, it’s hard to tell if it is my kidney that hurts or my hip bone in back.  I started out with a delicate back situation because of a childhood illness.  However, all was well.  I have been very athletic and active my whole life…ran 5 miles daily, yoga, pilates, weights…rode horses…bore children…twisted and turned…sat and walked…jumped and ran…no problemo.  That is…until Wiley!!!  I never put 2 & 2 together, Laurel.  Since using and now stopping the WP, my back, or my kidney, has ached and ached and I can barely walk some days.  It started about 6 mos ago.  It flares up during my P phase especially.  What are your thoughts on that?

[See the article Long-Term Progesterone Dominance, by Bent Formby, PhD.]

Did you get sores on the inside of you mouth?    YES…blisters…never knew what it was.   How is you skin? Any acne?   No acne…however I have developed a type of eczema that comes and goes…never had any skin problems before.  I have to be very careful about soaps, perfumes, lotions, etc.  Had to stop using all of my fav stuff and go strictly to unscented, castile soap, etc.

I was a vegetarian for 30 years…happily so.  My children were raised veggies…happily so.  All of a sudden within the last year…I started to crave meat…juicy, red, nearly raw!!  I sometimes felt like I was in a scene from ”Rosemany’s Baby”!!!   I decided to let my body dictate to me what I needed, so I started eating red meat and chicken.  Felt a bit better.

Why are we so sensitive to P?  You report that your kidneys hurt as well when you use P…so maybe it is my kidneys as well as my bones that are effected by the P?

Do you get edema?   BIG TIME!!  I can hold 3-5 lbs of water on any given day…have to use a prescription dieuretic or I look like Miss Piggy in the face and my feet don’t fit into my shoes!!

Additional update, October 16, 2006

Hi Laurel, sure you can use that on the web site.  I do have some updates, actually.  I’ve cut down my use of E to one line every 5-7 days, without any P whatsoever.  No thyroid cream either.  I got so terribly overdosed by using the WP for those years that I can’t tolerate much of anything anymore.  Pain in kidney better, and bone pain is relieved by cutting back on the hormone creams.  Hair is still shedding, especially since I’ve had to cut out the creams.  Teeth still sensitive.

Simply put, the WP screwed my system up terribly.   I’ve decided not to use any hormone creams for 90 Days and then do a urine test to see where my levels are.  I will proceed with caution from there.

End of Susan B. Antonio’s story and follow up.

[Some women have stopped the WP edema by using over 3 grams of bone calcium and calcium carbonate.  This is not universal.  Everyone is different]

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Christine  May 2005

I’m 67 years old and 14 years in menopause. I never had any “menopause” symptoms, because I had taken for years Remifemin, a black cohosh extract from Europe. But in order for me to control my (otherwise severe) fibromyalgia, not due to – but aggravated by – menopause, I have to ingest up to 60 nutritional supplement pills a day to stay pain free, still giving me only about 60 % of what my vitality at this age should be. I was looking for a better quality of life – more energy, and less dependency on pills !

A TV host lady I like and admire, had been on the WP for 6 months and she was doing very well. The book made and still makes total sense to me, except for the exaggerated notion of mimicking a 25 year old if I follow the Wiley Protocol…

However, I meant to “give it a shot” for 6 months, since I didn’t know of any other BHRT method or any doctor being open to the natural hormones.  I started on November 15 of 2004.

As from day 1, starting already on relatively high estrogen doses, a whole new “fully alive” body feeling immersed me the first 10 days. However, my nipples and breasts were painfully increasing in size, and I had to support them with a bigger size push-up bra day and night and with extra pillows at night. I sometimes enjoyed high energy days when everything seemed to go well, and when I had no need for extra (anti-inflammatory) pills. Then, while on the progesterone phases, I had gall bladder and liver pressure pains, got very constipated for half the month, spending hours tortured by bloating and hemorrhoids. – At nights, more and more itching and bad insomnia filled me with doubt. In the mornings, I felt like a truck had run over me or simply not rested, experienced brain fog and dragged through the day. Trying humour, I said to myself: maybe these are the necessary “initiatory rites” ? After 2 months I was advised to add more E, then even more, to ease the itching somewhat and start sleeping. It helped temporarily, then I started getting one severe flu after another, three different viruses within 2.5 months…! Only the strongest herbs taken around the clock could stall my bronchitis and eventually heal it. Simultaneously I had bouts of herpes or candida, often not knowing which it was, and therefore did not know what to eat, because they spell the need for contrary diets. I ascribed the failure of the Wiley program to work for me up to now to my several flus, of which I otherwise have only one per year.

I had never gone quite up to the highest WP doses because of my symptoms, last not least: days and days of vein pains and tingling in my legs which made me afraid of thrombosis and being bedridden…(my gran’Ma having died from it). I went back to a maximum of 8 lines of E or P, (“smoothing” a bit the sudden ascents and descents to and from recommended “peaks”), because I was afraid of uterine cancer, since I hadn’t had the “for sure” predicted period in 4 months, and in the second half of the month I was plagued with incontinence.

But the itching, wakefulness and a kind of small acne all over my body, as well as the massive invasion of small and big brown spots, since day 7 on arms and legs continued. Instead of twice a month, I had to wash my seemingly thinned and oily hair every few days to look decent, my forehead was full of hives that didn’t go away: Besides the questionably high dosages I suspected the 5 toxic chemicals in the hormone base cream to cause distress to my liver and cause these skin eruptions.

After 4.5 months still itching and not sleeping, and now feeling a soft, insistent heart pain I had not felt in years, I decided to go with what ‘my body seemed to tell me’, adjusting the estradiol and progesterone dosages to where I felt comfortable: a maximum of 5 and 2 lines for E and P respectively. My doctor had also put me on the smallest amount of Armour Thyroid per day and allowed me small doses of DHEA that I take while needed, since my thyroid and adrenals are on the low side, especially with added stress.

However there were many more times when I could not stand even 1 line of P, and no more than 4 lines of E, plus symptoms of too much moisture or too little (candida, herpes); and a never experienced pungent smell under my arm pits. My doctor told me that I would get everything that I “had when 25 years old” – yet I hadn’t had acne or oily hair at any age! On day 25 of the 6th months, I had again spent a “white night”, not sleeping and feeling lousy. I stopped all hormones for the day.

My body, (now relaxing”?) – “rewarded” me the next day, giving me my first and “normal” period in 15.5 years, hurrah!

I have since taken olive oil hormone drops, mixed with emu oil and cycling with 4-5mg of Estradiol for half the month, adding only 13-25mg of Progesterone the rest of the month, twice/day (since I still seem to have stored progesterone), and feel fine. Yet in every luteal phase, my frightening incontinence comes back, and long forgotten sudden bouts of back and knee pains linger around for days at a time. In the end, when I’ll be able to maintain a good level of energy – like I’ve had a number of days on this BHRT adjusted to my body, my wish will come true.

I wish every woman who starts on a BHRT program would start slowly, ideally under the supervision of a doctor knowledgeable in endocrinology and hormonal ramifications.

Christine October 2006

I, too,  stopped cycling after the Wiley superdoses because of my health problems from it. I stopped all P, slowly waned myself from E and even the low dose Edrops, switched to herbal alternatives like DHEA and Pregnenolone, then alternating with Black Cohosh and Chasteberry, simultaneously with sublingual homeopathic HGH for 5 months, with Armour & Cortef for the thyroid and pancreas supplementation, after HGH: Indium for 3 months for the stimulation of the pituit.-thyro.-pancreas axis,  in addition to/alternating with low iodine, and my only “sex-hormone-producing” supplements are now: twice daily doses of  160mg Saw Palmetto (Testosterone for P?) and twice Maca 500mg (for E,  lately only every other day), except on stress-days.  I’ve also been using NOW’s IGF-1 from deer antler 3x/day, in the last 3 months.

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Ms. E.

I had a total hysterectomy 6 years ago due to endometrial cancer. I was 39 then, I’m now 45. I didn’t use any hormones for 2 years after as the doctors told me not to use Estrogen for 5 years. I couldn’t stand it anymore so I went on .5mg of Estrace and got some relief. But not great. Instead of hot flashes every 15 minutes, they came every hour or so. I had been lead to believe if I did more Estrogen I would get cancer again. A little over a year ago, I read SLM and thought, this is what I need!!! So, I went on the protocol. I pretty much did the basic for about 3 months and I did pretty well, headaches were almost gone as were the hot flashes. I was thinking better, and sleeping better. Nothing was perfect but MUCH better. I was even considering myself a headache free person for the first time in years! Then things slowly started getting weird. The hot flashes didn’t really come back but other things started showing up. Liver/Gallbladder pains in the P cycle. Sleep not as good, shakiness, some anxiety. Kept tweaking the E but nothing really seemed to be working. I was starting to have some liver/gallbladder pain/pressure from days 18 to the next cycle of day 5. As the E went up the pain would subside. On Day 12 and 13, I was usually pain free. Then it would start up on day 14 and get the worse around day 21. I had what I thought was a gallbladder attack in September, but ultrasound showed nothing. I then started increasing my E some as my blood levels still weren’t where they were supposed to be. After being on the protocol for 7-8 cycles, I did double E for one cycle. I did pretty well on the Double E, peaked that month at 14 lines BID as I felt pretty high on that much and if I did more, it would put me over the edge with to much energy.I then went and peaked the P at 12 lines BID. I seemed to handle that okay. Then came the downside. On day 24 all hell broke loose. I thought I was having a hypoglycemic attack. (I had been having these weird episodes in the late afternoons, that I thought was low blood sugar) Then the next day anxiety so extreme hit me, I couldn’t do anything for 2 MONTHS! I couldn’t eat, sleep, think. I was so shaky. I lost weight, my hands broke out in a rash, my hair was falling out by the handfuls. I truly wanted to be committed to the loony bin, I was so desperate. The doctors prescribed all kinds of medicines, which, as of today, thankfully, I’m off of.

For me the WP was positive in that it did show me that I do need a higher dose of Estrogen. My headaches are better, I have very few hot flashes, thinking is clearer, vaginal dryness better, body aches gone. The negative was daily gall/bladder liver pain, which is gone now, dizziness, anxiety, low blood sugar feelings (I never tested so I don’t know for sure), libido never came back, and a fat belly.

__________________________

Linette

Age -51

Still cycling regularly with reduced monthly bleeding

Hormone related problems – fibroids, some PMS

Reasons for starting HRT – serious sleep problems with continual waking at 3:00AM, weight gain of 40 lbs in 3 years most around middle, daily tension headaches at work, recent lack of patience in my job (teaching high school), thought process difficulties, overall tiredness and lack of enthusiasm, very painful swollen breasts entire week before period, very difficult to get moving in the mornings, painful joints, some hot flashes when under pressure and some night sweats, no libido.

I have no history of any hormone replacement (including birth control) until Nov. 2004. when I started on the Wiley protocol after reading “Sex, Lies and Menopause”. I live on the East coast so had trouble locating a doctor willing to prescribe high levels of bioidentical hormones. The doctor I finally found had never heard of the protocol but prescribed for me.

This is a month by month synopsis until May 2005 when I quit the protocol. The first 3 months I was on the protocol exactly as prescribed with Wiley protocol creams. The last two months I was using Women’s International Pharmacy olive oil estrogen and Medicine Shoppe progesterone. I’m presently using a lower dose amount estrogen while I try to figure out what to do next. I have been titrating estrogen to symptoms. I’ve not added any progesterone.

November 2004 – Started the protocol exactly as in the book Sex, Lies and Menopause with hormone creams ordered from San Ysidro compounding pharmacy in Santa Barbara California. The first 2 weeks went extremely well with some bouts of sleepiness. The headaches disappeared immediately and my tolerance for noisy students increased tremendously. When I added the progesterone I had more sleepiness. On the progesterone peak day I felt very out of it. Breasts were still sore this month but not as bad as pre-HRT. Lost some weight without trying. Period was regular and on time.

December 2004 – Continued with base levels as in the book and felt great. I switched to hormone creams from Medicine Shoppe in Santa Barbara. Felt very clear headed and no hot flashes. Everything else continued to go well. Added the progesterone cream and went back to feeling draggy. The day after the progesterone cream was peaked I had a kidney stone that sent me to the Emergency Room in pain. I’ve never had any problems with my kidneys so had no idea what it was. Because it was so coincidental with my progesterone peak I asked if the hormones could be involved and was told no.

Lost a few more pounds despite Christmas eating. Period was regular but shortened. Also began to bloat with water retention all month.

January 2005- Added 50% estrogen to the base level in the book because I began to have some sleep problems. Overall I continued to feel really good. No breast swelling or pain for the first time in years. I gained back the weight I lost. Period was regular and short. Water retention problem all month.

February 2005 – Still having some sleep problems and now some hot flashes when under pressure at my job (these happened usually in the late afternoon). I increased the estrogen to 100% over book base level and kept the progesterone levels the same. I was now dividing the estrogen doses into 3 daily with the mid-day dose around 4 mg of cream depending on my work stress levels. Don’t recall any problems with the progesterone phase and basically felt great this time. I do recall a few kidney pains, gained weight in my middle and thighs, breasts got bigger but were not painful. Period was regular and lasted only 2 days. Water retention still a problem but not as bad.

March 2005 – Because of discussion on rhythmic living yahoo group over the ingredients in the creams I switched to olive oil estrogen and continued on the Medicine Shop progesterone. I made the switch the last week of my cycle. Couldn’t tell any different with my sleep and hot flashes. My breasts were very swollen and somewhat tender and my body blew up with water starting from my E peak day. Serious sleep problems during the progesterone phase so dosed with more estrogen. Kidney pains starting periodically. No libido and felt like I was dragging through the day a lot. Period was 1 day late and very light. I also developed a very strong weird underarm smell that was strongest when I peaked the progesterone. It began to go away after the progesterone levels were dropped.

April 2005 – Now on olive oil and back to dosing at the base levels in the book with estrogen. I cut the progesterone doses down 3 lines but still peaked it. My breasts were very tender right after the follicular phase and continued to swell and hurt the rest of the month. They seem to have grown also. I dragged through most days during the luteal phase and was blown up with water. Constipation problems all month plus off and on kidney pains especially towards the end of the luteal phase. My period was late by 5 days. The weird progesterone smell returned a few days before I peaked it and lasted through the rest of the luteal phase.

May 2005 – Dropped any resemblance of the protocol and began dosing with the lowest amounts of olive oil estrogen needed to let me sleep and avoid hot flashes. My body again blew up with water and the underarm progesterone smell returned. I added extra estrogen (1-2 mg) during the day if I was going to be under pressure at work. I’m now 3 weeks into this maintenance program while I try to figure out what to do next. I’ve not added any progesterone so far. It feels like I have enough in my body.

__________________________________

M’s Hormone Story

Having had breast cancer twice I avoided hormone replacement therapy until I showed signs of brain fog, headaches and irritable bowel syndrome and read Wiley, Taguchi, Formby’s book Sex, Lies and Menopause. After careful consideration and several discussions with Susie Wiley regarding the risks I may or may not be taking, I started the Wiley protocol in February of 2005. Since I have had cancer she suggested I start with the Progesterone phase of the cycle, which was an uncomfortable start with lots of cramping.

Second month 03/05

The second month felt great. I had lots of energy, the headaches went away, and the brain fog started to lift. At the same time, my body was showing unusual allergic signs including a constant runny nose as well as the release of a vaginal mucous plug and prolific clear vaginal fluids during the Follicular phase. I did not pay too much attention to this phenomenon, because as an overall I was feeling fabulous! I had a light period.

The third month 04/05

By the third month I ran into problems with the pharmaceutical cream and, in hindsight, the progesterone doses as well. When going to the Progesterone peak and then down I started to experience intense itching from my head to toe. After consulting with the pharmacy regarding the cream, I discovered that the standard pharmaceutical cream had multiple chemical substances, which I do not consider good for my body and would be uncomfortable to recommend to other cancer patients who often have a toxic load already.

On the recommendation of the pharmacy, I consulted with Susie Wiley and she suggested it was perhaps not the cream, but the progesterone blocking the estrogen and to up my estrogen by two lines. I did, but the itching just got worse. I finally switched to an olive oil hormone formula and the itching went away EXCEPT when I got to the higher doses of progesterone, the itching returned promptly. My excessive clear vaginal fluids continued. I had a full-on period. I had my blood tested on day 12 (while on olive oil hormones) with a reading of 671 for Estradiol!

The fourth month 05/05

Even though I was told by the Wiley people that if I was doing the olive oil hormone formula I was not doing the Wiley protocol – only hormone prescriptions from Wiley certified pharmacies are acceptable – I continued to stick to the Basic Wiley protocol (E4) and made the proper peak during the Follicular phase. I was still producing lots of vaginal fluid during the Follicular phase. Again I ran into problems with the progesterone when I would go over 100mg BID. The intense itching started and I found I could not go any higher. I had a huge period on day 27, uncomfortably heavy.

I am now in the Follicular phase and have lowered my E even further to 4mg of E BID and slowly, slowly attempting to make a peak – today is day 7 I believe and am still at E5mg BID – my left ovary is sore, even though I have been menopausal for 9 years. Two years ago, I was told that my ovaries were so shrunken that the pelvic ultrasound could barely detect them. It feels like Mittelschmerz or as if my ovary is trying to wake up.

So the good news is that I am really happy to be on hormones – they have given me back my brains, eliminated my headaches, may even have reduced my blood pressure, and reduced my irritable bowel symptoms significantly.

On the negative side, my body tells me that the doses I have been taking are not right for me. I am still discovering what dose works best for me. Having had cancer I am extra cautious in forcing myself in a situation that does not feel right. A three-month time period is usually my guide to determine whether or not a treatment is working for me. The Wiley Protocol has not worked for me!

___________________________________

Nelina

38 has all parts- tried the WP for 3 months. I was not comfortable and immediately gained weight. I have been off the protocol for 3 months. I’ve had more herpes infections it is harder to deal with stress than before, I’m more tired than before the protocol and I had epstien barr before. I’m up and down emotionally and more than before.

___________________________________

E-Woman,  52 years

In the beginning I needed BHRT. Little did I know when given amounts, that my Dr. would shutter at, my life got GREAT. I found so many things I was told are “just what you get at you age”…did not have to be! I no longer had hip and joint pain, sleep was now good. The list reads like a cure for all those TV commercials, only Estradiol fixed them all. I was in love with this new found BHRT.

Little did I know at the time that the corresponding Progesterone levels to go with it would be a secret player in my dosing adjustments. I found that too much P would slowly build up and in three months, like a pop-up timer going off, so did my balance. It seemed I now needed more E to balance this large amount of P. The process continued to escalate until I was no longer able to tolerate any P. I was now taking much more E than I had originally needed to feel good, but without it all my symptoms came flooding back as if I had never begun the routine.

I was lucky though, over the last 6-7 months, of my 22 month journey to find perfect balance, I encountered Laurel. She had put up a web site Rhythmicliving.com. There, many of us met to exchange ideas and research, we started seeing patterns. The protocol seemed to work for some longer than others, and at three months, lots of changes occurred Now we think we understand why. At least at this stage it seems to fit. We are all so different, that is why I choose this protocol, I could customize it to work for my body. Oral BHRT never seemed to work for me, but this, wow. I got a taste of how it could be.

I started with the Pharmacy in the book,SLM. I felt they would know the most about how this protocol was to work, and best to guide me. I was told that the protocol had been in place for about seven years, dealing with hundreds of women, many of them cancer patients. [We do not know details about this reference. Do not take it as fact. E-Woman is reporting what she was told] The results they told me were amazing, I felt very safe with Susie and Steve. I had no idea this was an ongoing experiment and they were still trying to duplicate the original pharmacists work for this protocol. I would learn this over the next few months.

I did fairly well at first, was amazed at the relief I was getting from so many symptoms. The E was a little bit much at first as I moved up my dose according to the protocol, I was reassured that all was going as it should, lots of “receptor talk”. So by month 3, I was stating to really like the E, but the P was getting harder and harder to do. At 100mgs. I could function, just added a little more E. Well as the P went up I asked if I could just add more E to compensate for the P, Susie gave me the green light to go with whatever worked. So this is how the E and P snowball started. Soon I would crash. I would be sent product that was faulty, E that could not be absorbed, or would go in to fast, separated, crystallized, too much lemon essential oil added, and now flew in so fast my receptors, I was told, shut down because it entered to fast. Three more batches were sent , all with different problems. I kept being assured I would be told, kept in the loop. No one would call, I would feel sick, have heart pains and palps. I had my life coming unglued. More promises.

I had to move my RX for my health’s sake. I was unaware at the time that, not only were there product issues,but my body no longer could tolerate these large transdermal doses of P. I was now suspicious of all products if I did not feel well. I never thought my E was getting drowned out by my P. I started reading and reading, every book I could find on this. So the P was making me unable to hear my E….but Susie kept telling me I needed to push through with that dose of P, or I was at risk for cancer. In fear I did this, for 3-4 more months. Finally my body could take no more. I started loosing hair, couldn’t sleep. I was a mess. I talked to as many pharmacists and people in the BHRT field as I could. After hearing my story they were in disbelief.

My dose for Progesterone would now show a Linea Negra, which appears in the second trimester of pregnancy. I was now told to take a P break, all these professionals agreed, no P for 2-3 months to get me back to a more normal level. Susie is still insistent that a person stay at 250 mgs. Minimum for the peak with protocol.

Example of this members linea negra (associated with pregnancy), which developed on the Wiley Protocol is under the tab Progestone, Linea Negra.  Other women developed linea negra, as well.

I had decided I was not on and would not be on this protocol, as it was making me sick. I am feeling better each day, as the buildup of P slowly leaves. I still have the stripe and many of the side effect that go hand in hand with too much P. My balance is off, but with time and listening to my body, help from good people, I will find that balance.

I hope to share more information, as I understand and learn from this BHRT experience. I also hope my Dr. will continue to encourage me too, as I follow this endeavor. This is a new frontier and only working as a team with our bodies and practitioner, as well as pharmacists, will we find the answers on this new unblazed trail. I welcome questions and feedback on this journey, what a wild and learning one it’s been so far. E-Woman

Addendum: We asked how old she is and what parts she has.

LOLLOL….more like, what parts are left,lol. Must be story time. OK 52,total hysterectomy. No ovaries. HRT, woke up ‘ 96 without parts, and on Premarin….made me insulin resistant, and felt bad Karma from it, went on progesterone only. Then I felt old and hurt. Found out about WIP in Madison and I got on BI-EST caps, and 100mg per gram. Progesterone cream. Did that BID no break for 4 yrs.

In 2001 I started feeling like crying for no reason, so my Dr. lowered the E2 portion of my BI-EST and increased my P!!! It was down hill from there!

Then I tried Prometrium, first the 100mgs., then 200mgs. All of it BID and NO break. The idea was he thought the WIP progesterone cream was not absorbing. That was why the switch to Prometrium, and the dose increases in P. From there I went to sublingual drops. That was very BAD…the alcohol based drops burned and made me anxious. The P made me dizzy and sick feeling..

About this time I read SLM, and having talked with my Dr. and said I wanted to give this a try, she said she knew the author and the references were sound. I could give it a go. I had to keep her up to speed and the new journey began. So I thought. I went to pick up my RX at the local Pharmacy, he had made me up tri-est, and P in a 15mg. per dose both in 1ml. syringes. I asked what happened to my RX???? He said he would not make that protocol up, felt it would harm me. He said it was not a healthy protocol for women and he wouldn’t let his wife do it or anyone for that matter. He said he wouldn’t feel comfortable with it. That is how I called SY,the Pharmacy in the book, felt they would know the WP and them seemed to think it was safe and tested. They told me they had been working with Susie and the cancer patients for years. I felt safe with this new knowledge. BALAHBALHBALah,lol….god if I only knew, what I know now eah!!!!

____________

Jan Debra

50 (This member sent a copy of this note to her doctor. He was so alarmed he refused to write for the Wiley Protocol as the practice already had a simple effective approach to BHRT – the report shows the “ease of use” with protocol – or not.)

I’m submitting this history to add to the group’s data bank. I have been on the WP for the last 22 months (so, May 2002)-so I guess that makes me an old-timer… if anyone actually gets through this whole thing and wants to comment, I am grateful. I should add that I’ve read most of the postings on this and the other site by now: it seems I’m in the info addiction phase.

Background: I am 50, healthy, never had kids, and I have all my parts-uterus, ovaries etc. and I don’t have other problems people often come to this protocol for, like Hashimoto’s; however I have had cervical displasia and there is cancer in my family, both breast and colon. I am not taking Thyroid or Adrenal supplements-I’m not on any medication for anything (except see supplements use at the end).

I started this protocol while still having periods, although they were 18-21 days apart by then (down from 30-34). I didn’t have hot flashes or night sweats, but I couldn’t sleep and was continually exhausted, my joints were beginning to feel creaky, I had beginnings of arthritis in a few places, my hair was falling out in large amounts, my skin was becoming very dry and my nails somewhat thin and brittle. Interestingly, my sex drive was going up through the roof. I have had horribly painful and mentally debilitating periods all my life, to the point where I had rules at cycle-end like: Don’t sign anything, don’t make any important decisions, don’t leave the house with a credit card, don’t drive a car, be really careful crossing the street.

Here’s the laborious version of my prescription changes: May of 2003, I did just p in the luteal phase at what I understand is basic protocol dose:

p: 4,4,4,8,8,8,12,12,8,8,8,4,4,4,4. Then I advanced to the whole thing in June 2003:

e: 4,4,4,4,4,6,6,6,7,7,7,8,2,2,3,3,3,4,4,4,4,4,4,4,4,4,4,4 and

p:4,4,4,8,8,8,12,12,8,8,8,4,4,4,4 (in lines/ml BID). These were compounded by a local pharmacist, who changed the base creams on me constantly (and now I wonder what else!), so I moved to San Ysidro in February 2004.

After tests showed day 21 values could go higher, Suzie recommended that I up the basic luteal phase dosages in March 2004:

e: 4,4,4,4,4,6,6,6,7,7,7,8,2,5,6,6,6,7,7,7,7,7,7,7,7,7,7,7 and

p: 7,7,11,11,13,13,15,17, 15,13,13,11,11,7,7 (so two big changes:

the SY Crash, and dosages, at the same time). It took me a few months to recover from this. July, August and September were great, and my best-feeling months. These were also the months I was cycling with the moon and ovulating at full moon; and my luteal progesterone levels were highest (11.27 July and 12.82 September).

I slipped off the moon phasing, though, so decided to try and get caught up by extending my prescription. I arbitrarily added another day (of 8 e) after day 12 and another at the end of the cycle, to bring up the number of days to 30. I’m guessing that this lowered my p test results on day 21, based on how I felt-I only had one blood draw during these four months I learned not to mix the creams while applying them during this time. It became clear to me that I needed more e as I was still spotting/experiencing breakthrough bleeding day 24 onwards, and experiencing mild cramping throughout. So I changed things again.

With the start of the cycle I am just ending, I am back on a one-day e peak and a 28 day cycle that ignores the moon for the moment.

Suzie advised me to up my e in the first half of my cycle. I switched to Medicine Shoppe (mid cycle with the p because I had run out of it). And I rotated the creams to different sites-I’d been using the same ones for 3 months. So the whole thing looks now like

e: 6,6,6,6,6,8,8,8,9,9,9,10,2,5,6,6,6,7,7,7,7,7,7,7,7,7,7,7,7 and

p: 7,7,11,11,13,13,15,17,15,13,13,11,11,7,7,7

So I am still adjusting to the protocol-it seems this is a never- ending process in some respects, although a gradually enlightening

one- and my hormonal self runs my daily life at least to the degree that it would without the protocol.

While I feel better overall since being on this, I basically need to schedule my life in alternating phases-one part of the month I’m mentally and emotionally competent and energetic, and the other it can be literally dangerous for me to do certain things and I’m exhausted, an emotional and cognitive train wreck. The last ten days of any cycle are usually a downward spiral to hell and zombie-ism, ending with the last 2 days and the following Day 1 a steel wool scramble of inarticulate scraping by-and my cramps and exhaustion take over me, the room and anyone in it like The Blob. Very much like when I was a teenager and young adult. If someone gives me the wrong change in a checkout line, I’m liable to break down into tears.

This, however, is way better than the unpredictable swoops, climbs, crashes and plain weirdness of peri-menopausal pre-protocol days.

My WP self is still unpredictable, though: some cycles, like the current one, I have even energy and mental stability. So it’s safe to say that I am back to feeling as I did 8 or 9 years ago before peri-menopause started, with some exceptional cycles as gifts from heaven.

Here is how I feel better: I sleep better, by far, and sometimes even sleep the entire night through (although I have to do the Lights Out thing: go to bed at 9, in complete dark and quiet, in order to achieve this. More on this later). My skin and hair are less dry and my joints feel better. I seem to radiate sexual energy and men are more interested in me than they have been in a while (wow, it is cool to get whistled at when you’re 50!) My moods are more predictable, to myself and to others, and generally more even (except during my luteal phase). The biggest benefit is that a cloud of light depression seems to have lifted that when I look back seems to have been there for 10 years. This is a true blessing.

As I said, I don’t have hot flashes or sweating- but never did in peri-menopause, except once or twice 3 years ago. No digestive problems as a result of protocol, no rashes. My body temperature hovers in the high 97’s, as it has since I can remember. My heart doesn’t experience the pounding or racing or palpitations that some people notice (and I take calcium-magnesium at night). Thyroid tests a couple of years ago showed my levels in acceptable ranges. I haven’t had my adrenals tested recently, although they bottomed out during a severe illness I had 5 years ago.

Weight is a problem- I am 5′-5″ and 155-160 lbs. While I have a lot of muscle left over from a career as a speed skater in my 30s and 40s, this 160 lbs is, alas, no more the 12% body fat it once was. I followed the South Beach Diet for 4 months last year and lost 12-15 pounds for my 50th birthday in August, but only by sticking to a pretty constrained form of it. The moment I added fruit to the diet I began to puff out again and I’ve gained it all back. I can’t live without fruit. I am exercising 4 days/week, cardio, yoga, and weights, but it makes no difference. I am almost a compulsive eater during the last week of my cycle. I am hoping that the early-to-bed, don’t eat past 5pm lifestyle, which I have been muddling into over the last two months, will help to change this.

I sleep about 9 1/2 hours a night, less in the summertime, which is certainly a lot by modern standards. Until this last cycle, I would toss and turn for about three nights starting Day 22 or so, and sleep would evade me almost completely. As I have said, my sleep is vastly improved from before starting the protocol, but it is still very light, and I need a white noise machine to cancel out my husband’s light snoring if we sleep in the same room. I can’t drink caffeine any more, and drinking alcohol within an hour or so of bed also keeps me awake.

Bleeding used to be heavy up through my mid-thirties. Periods on the protocol have been overall lengthening and are now about 28 – 30 days, with spotting or breakthrough bleeding usually happening on days 24 or 26, sometimes 22 or 27- then it continues lightly or sometimes stops until Day 1, when I then bleed moderately for 3-4 days.

I experienced horrible periods in November, December, and January.

My last day 11/12 test results on Jan 18 showed e: 96 pg/mL; p: .92 ng/ml, and the whole of my last cycle I felt lackluster; I had frequent headaches in the first half of it, and strange flashes in my eyes at night; I had low-level cramping frequently throughout and my eyes teared a lot. THIS cycle, by contrast, I have had none of those problems. I can even conjugate verbs today, day 28!! Now I am scared, because I have changed the source of product, and who knows what the next month will bring.

FYI here is complete e/p blood testing results.

1/18/2005 Day 11/12 (12, actually) estradiol 96 pg/ml; progesterone .92 ng/ml

11/1/2004 Day 22: estradiol 363 pg/ml; progesterone 4.0 ng/ml

9/7/2004 Day 21: estradiol 192 pg/ml; progesterone 12.82 ng/ml

7/12/2004 Day 21: estradiol 144 pg/ml; progesterone 11.27 ng/ml

(ferritin: 66 ng/ml)

6/12/2004 Day 21: estradiol 671 pg/ml; progesterone 5.20 ng/ml

Period 3 days late so started new cycle of hormones 3 days late

6/2/2004 Day 11: estradiol 167 pg/ml; progesterone 0.75 ng/ml

5/18/2004 Day 21: estradiol 332 pg/ml; progesterone 5.01 ng/ml

painful ! period and leading up to it, breakthru bleeding day 21, started period day 24

4/20/2004 Day 21: estradiol 22 pg/ml; progesterone 5.86 ng/ml period was pretty painful and had breakthru bleeding day 21, then days 27, 28.

3/23/2004 Day 21: estradiol 166 pg/ml; progesterone 7.85 ng/ml heavy then light breakthru bleeding starting day 24 and continuing thru day 28, had very light bleeding beginning of next period

3/13/2004 Day 11/12: estradiol 93 pg/ml; progesterone 1.02 ng/ml

2/24/2004 Day 21(22, actually): estradiol 144pg/ml; progesterone

7.28 ng/ml

2/14/2004 Day 11/12: estradiol 449 pg/ml; progesterone 0.78 ng/ml

feeling stuffed with e

1/26/2004 Day 21: estradiol 52 pg/ml; progesterone 6.40 ng/ml breakthru bleeding day 25

1/16/2004 Day 11/12: estradiol 164 pg/ml; progesterone 0.85 ng/ml

12/30/2003 Day 21: estradiol 106 pg/ml; progesterone 9.82 ng/ml feeling pretty good but breakthru bleeding day 24

12/2/2003 Day 21: estradiol 80 pg/ml; progesterone 8.71 ng/ml breakthru bleeding day 21 on began protocol in May 2003 with just progesterone; added estradiol in July 2003

One more thing: As a pioneer like you all, I have felt alone much of the time in doing this protocol. Suzie is of course notoriously hard to get on the phone, and my doctor doesn’t know anything about the WP, although he’s said he’s willing to learn. I gave him Suzie’s book. (This member has told us her doctor will no longer write for the Wiley Protocol)

_________________

Darlene

So, here are the symptoms I have experienced on the high doses of P:

*dry chapped itchy skin

*aching neck

*dehydration

*kidney pains and possible stones

*insulin resistance

*cravings and runaway appetite

*weight gain

*fluid retention which continues even now – ankles, knees, entire lower body

*headaches upon waking

*unusual headaches

*hair falling out to the extreme – no new hair growing in

*sleep disturbances

*thickening in the waist, belly fat

*extreme thirst

* extreme urgency to urinate frequently

*itching

*facial hair and fuzzy face during P phase, lasting longer each month *mental lapses and inability to think

*low level depression

*sleepiness all day

*loss of strength

*acne and hives

*moon face and puffiness

*deep tissue breast pain and heaviness

*nipple soreness

* eruptions at lymph node areas, groin, armpit, sides of abdomen

I am 56, post-meno and have all my parts. I was taking 2.50 tri-est and 100mg. progesterone daily. In march of ‘04 I began to cycle my progesterone

2 weeks per month and use the tri-est twice a day…by June ‘04 I had a period again, after having been without one for exactly 2 years. I felt it was healthier that if a woman E to create a uterine lining, she should shed it. So I did. My doctor called around to Uzzi, Dr. Burman and some of his colleagues who prescribe BHRT and asked them about the cycling and getting a monthly bleed….he said that most of the various doctors’ patients either didn’t like it or didn’t do well on it – but he told me that if I felt good doing it he was okay with that. I then asked for estradiol rather than tri-est…he told me “we use tri-est”. So I ordered some estradiol

(oestrogel) online and in August, I switched to estradiol, using 1.5 mg BID.

I felt good and believed the estradiol made me feel more mental clarity and energy that the tri-est had. In Sept. ‘04 I asked my doc to please prescribe the Wiley protocol for me..he said he had only skimmed thru the book and wanted to know more about it before prescribing it. I told him I would give him a couple of months…

During my Oct. 04 cycle, I began to use 300-400 mg P BID in preparation for the WP. I had always done well on P and had gotten a lot of energy and good diuretic action from it. I also raised my dose of E in a peak during each month, from 3mg to 6mg BID and then back down to 3mg BID. I felt good!

I liked it and with the addition of the higher dose of E, my sex drive soared. I figured I was awakening receptors with the high E & P in preparation to go on the WP and saw that the P didn’t seem to be problematic for me like it seemed to be for others….December came and the doctor STILL couldn’t be convinced to prescribe the WP for me..I told him I would give him until 2005 to do it and meanwhile I would assemble a book for him with everything he needed to know, anecdotal info, prescribing info, etc. In December, my hair began to fall out in extreme amounts. EVERY DAY the shower drain would be so clogged water would not run down until it was cleaned. I didn’t know what was causing it. I have been on Armour thyroid for 14 years now and felt it was not thyroid related….I have only lost hair otherwise in my life when my E began to decline. Anyway…I gave my doctor the WP handbook I had made for him and he said he would call me – which he did in March…he said what I had written to him about the WP didn’t make a lot of sense to him…..he told me apoptosis was cell death and I didn’t want that…I said “Yes I do!”

Months went by and I didn’t get back to him on getting my WP prescription, but I did continue to use the high doses of P two weeks per month and 3-6 mg E BID during each month..I felt pretty good during the E phase, happier and better sex drive, but beginning in Feb. I began to get extremely dry, chapped flaky skin and chapped lips during my P phase….I itched and I figured it was the chapped skin…I was unusually thirsty and attributed the thirst to the fact that the P was acting as a diuretic and I needed to drink more water. But strangely enough, from Feb on, I began to have swollen ankles all month long – even while I was feeling dehydrated and had an urgency to urinate during the P phase of each cycle. I will outline the changes that occurred after I began high P:

Oct. cycle: 300mg P BID 2 weeks per month

3mg estradiol BID

I felt fantastic! Sex drive way up for the first time in about 3 years.

Energy good and mental clarity wonderful.

Nov: 300 P BID day 14-28

3mg E BID

I felt very good, happy and liking the E2 instead of tri-est

Dec: 300 P BID day14-28

3-6mg E BID peaking mid-month

started having cravings for sugar, starch, salt and picking up whatever was there and eating – not totally aware of what I was doing! Ate ice cream and salty chips, when this stuff has never tempted me for the last 25 years.

Started going downstairs about 9 PM to find something to eat..it was always junk food. I didn’t connect this eating behavior with anything in particular, but noted to myself that my willpower and sense was gone!! I put on 2-3 lbs in Dec and chalked it up to the holidays. My hair began to fall out and I wasn’t sure why. In December I began applying the P as Wiley suggested – behind the knee and into the surrounding area, giving myself a base of P in my fat. In the past, I had always been careful NOT to apply to places underlain with fat, so that it would not build up, but be used quickly. This application method had seemed to be the consensus of most of the sources I had read..ALWAYS apply P to thin skinned areas which are highly vascularized 9such as tops of hand, behind ears, inner wrists) for entry into the bloodstream and without fat underneath, where it could sit and be retained. This new “Wiley” way of applying P into the fat may have added to my storage of the excess amounts I was using. I did this month after month – into my fat.

Jan: 300-400 P BID day 14-28

306 mg E BID peaking mid-month

felt good – liked the high dose of E, began to find I wasn’t feeling as well during the P phase as I had been..in the past the whole month was similar for me..beginning this year, the P phase was something I was not happy about. I never related it to the high P though, because for years I had always thought I did very well on P…previously to Oct. 04 raising my P, I had been doing about 150mg BID during my P phase for 6 months before that, and always liked the energy and diuretic it gave me. Beginning in Jan 05 – my P phase was like a two week long PMS…I began to cry at the drop of a hat, have a need for comfort food, even when I wasn’t hungry – it was like a compulsion to eat – I was bloated and my ankles were swelling. I began not to be able to wait for my period to start just so I could feel better – but my hair began to fall out in handfuls every single day – into my shower drain and clogging it….no new hair seemed to be growing in to replace it

Feb. 05 – 300-400 mg P day 14-28

3-6mg E BID peaking mid-month In Feb I began to get really dry skin during my P phase…my skin was dry and flaky, even on my always oily face, I itched but figured it was the cold weather and chapped skin – my lips were chapped too. I did realize the P was drying me out and making me very thirsty, but was drinking huge amounts of water all day and night and put moisturizer on my lips and face all day long and nothing was helping. I found I had a very intense urge to urinate, probably about once per hour, but thought it was due to the large amounts of water I was drinking. the holidays were over and I had no willpower to stop eating! I would start the day by boiling eggs and gathering my protein snacks so I would have something to eat if I got hungry and look down at an ice cream bar in my hand!! what the heck was happening?? I was gaining more weight and feeling tired and depressed, due to the sugar in my diet. Having been severely hypoglycemic since my twenties and having learned to eat accordingly, I didn’t understand my urge to eat sugar or junk food..it just wasn’t even something I enjoyed..but for some reason I kept eating..I attributed it to things going on in my life which were rather tense.

Beginning In Feb. I began to worry that I was becoming diabetic…I had always been insulin sensitive, but the recent months of sugar and junk I was eating didn’t lead me into hypoglycemic episode which really surprised me…I began testing my fasting BG and it was usually around 90-100, which is on the high side for me…I thought that it was possible the higher E was raising my blood sugar and didn’t want to tell my doc for fear he would not prescribe the WP. I realized way later, I was becoming insulin resistant!

My hair continued to fall out so quickly that I was surprised I still had any on my head..I had NO IDEA what was causing it. It was getting very thin, dry and lifeless looking.

March – 300-400 mg P day 14-28

3-6 mg E peaking mid-month was still feeling better than on the tri-est, more energy, clear mind, happiness, and I found myself dabbing on extra E all month – but it was no longer for the full month that I felt wonderful…the P phase again proved to be hard – it dried me out again, made me itchy and my lips were horribly chapped – my skin was dry but breaking out, which has never happened to this degree…thirsty, dehydrated, yet retaining fluids around my ankles…since I thought it virtually impossible to be this dried out and dehydrated PLUS have fluid retention, I thought my ankles were getting fat from the junk food! Several times in March, during my high P phase, I experienced a pain in my kidney area that I had in the past many years ago…. the doctor had then told me that the pain was caused by me passing kidney stones which were like fine grains of sand…in March, on several occasion, I was afraid that my kidney stones were returning – the pain was so bad it was like a knife in my back that took my breath away..I also began to experience constipation day after day, which hasn’t happened to me in many years. I just kept drinking GALLONS of water and thinking the diuretic action of the P might have caused the kidney pain and the constipation. The problems I had experienced in the March P phase did not go away when I stopped the P. I continued to be thirsty and my skin dry until a few days before it was time to being the P again in April. My constipation continued, which was unheard of during my period in the past.

April 05 – 300 mg P BID day 14-28

3-6 mg E BID peaking mid-month

In April I cut back slightly on the P…since Laurel had been making noises about too much P possibly making her lose her hair and I felt I had been getting too dried out on the high P, I went down slightly with it. My face broke out in acne bumps but it was very dry. Something I have never experienced before. My doctor had prescribed me the WP and I was anxious to begin it…I had felt good with the higher estradiol and would have stayed with that and lowered my P somewhat, except I was worried about the cancer risk of low dribblin’ doses of E and not using enough P to trigger apoptosis. I had 6 days mid-cycle where my breasts became very sore deep within the breast tissue. I had to hold them when I moved or ran up stairs, I had to hold them when I turned in bed and prop myself all around with pillows so the pain in my breasts would allow me to sleep. My April P phase was brutal…from the minute I began to use the P, I began getting more kidney pain and a pain in my neck…I didn’t relate the pain in my neck to high P until I spoke with others who also have it. In April, I was constipated for the full month and only had two days that month where I went to the bathroom normally. I was dry, thirsty and itchy and found the urgency to urinate was back – this never happened when I was only using E…I also began to have problems with my mind. I seemed to have lapses in my ability to think – it was as though my mind went totally blank…I was mildly depressed and life began to seem very bleak to me…I would be okay and these bleak feelings would come out of nowhere. I began to have terrible headaches every morning when I would wake up…wondered if it could be my tree pollen allergies, but I had never had headaches with allergies. Could not explain the headaches, but thought it might have to do with the sugar (and junk food) I was eating…my family began looking at me funny when I would pick up a box of cheese crackers or whatever was there and start eating..this is very unlike me – especially since I was not eating out of hunger…I gained 16 lbs since last Sept. when I began to use more hormones…but STILL wasn’t making the connection! I put the weight on in my mid section and I usually do not carry weight there. I began to retain fluids from my waist down in April, and now in late May, I still have swollen legs, knees, ankles, and my legs have lost their shape – they are round, swollen and retaining fluid. I tired a diuretic and it did nothing

at all to help me lose some of the water. I was again concerned I was becoming diabetic….

May 2, 2005

My period came and so – joy of joys – I began the WP!! I still had the effects of last month’s P hanging around…my skin was dry and itchy and flaky…but now it is warm and my skins should not be dry like this..my li[lips were chapped like I was sick. I began either not getting to sleep until 3 or 4 AM, or waking after I had been sleeping for an hour and not getting back to sleep for hours…I had kidney pains, stiff neck, and was drinking huge amounts of water. Still not going to the bathroom well. I felt like my cortisol was spiking at weird times…walking around exhausted during the day and wide awake at night. On Day 3 of using the MS E2, I broke out in itchy hives all over my dry face. I took Benadryl at night before bed and it calmed it down somewhat. On day 5 of my WP, I got very sick. Chills, sore throat, headache and fever so bad that all I could do was stay under the covers in 80 degree weather and shiver for hours and hours…Advil didn’t help…I was sick for two days that way and then the third day, I developed a dry cough and felt like my lungs and windpipe were dry and flaky and itching intensely…I thought I had triggered apoptosis to the point that my lungs would dry up and flake away, cell by cell…it was the strangest thing I have ever experienced!! 10 days later, I am still coughing and it is a DRY cough, no phlegm. And when Laurel mentioned her mom having a harsh cough and another girl had mentioned that she had the exact same thing (fever, sore throat) the month before on her day 5 of her first month on WP – I gave it a couple more days and left the WP on Day 9…I used only 1 dose of E from the MS that day and went back to my estradiol. My hives, which had been with me for 4-5 days, went away the next day….I used my estradiol for 3 days and then ran out…so I went back to the MS product and applied the E – within hours I had the hives back and itching! Seems to me that there is something in the MS base which is irritating or allergenic to me. It has been two weeks since I stopped the WP. I have decided not to use any P this month…I still am feeling effects of P….I have mild depression and a flat energy level – not at all what it should be. I am going back to estradiol 1.5 mg BID and the doctor prescribed prog which I can use when I feel I want to. I do not know when i will return to using P.

So, here are the symptoms I have experienced on the high doses of P:

*dry chapped itchy skin

*aching neck

*dehydration

*kidney pains and possible stones

*insulin resistance

*cravings and runaway appetite

*weight gain

*fluid retention which continues even now – ankles, knees, entire lower body *headaches upon waking *unusual headaches *hair falling out to the extreme – no new hair growing in *sleep disturbances *thickening in the waist, belly fat *extreme thirst

* extreme urgency to urinate frequently

*itching

*facial hair and fuzzy face during P phase, lasting longer each month *mental lapses and inability to think *low level depression *sleepiness all day *loss of strength *acne and hives *moon face and puffiness *deep tissue breast pain and heaviness *nipple soreness

* eruptions at lymph node areas, groin, armpit, sides of abdomen

Right now, I feel I am in P overload. It was not the WP, but the high doses of P that did it to me. There is NO WAY I could use the amount of P in the WP in my present condition and I have no idea how long it will take me to get back to normal. My thirst is such that I need to drink water all day and night. I have been taking milk thistle in an effort to cleanse my liver. My mind is still given to lapses of memory and thought processes stop without warning. My energy level is flat. I do not sleep through the night anymore and spend several hours awake in bed every night. This is VERY unusual for me.

More stories are being gathered from members and are being checked before being published. Women who are ill struggle to get through the day. Many have said they will write their story when they feel better.   Lots of stories have appeared in the discussion group and as of Jan 09 women continue to show up feeling sick on the WP.