Nikki

by Nikki
(Los Angeles, CA, USA)

Hi Wray and fellow hormone sisters,

I'm 42 years young. I was "accidentally" diagnosed with Endometriosis when I went it for surgery for a cyst on my right ovary, and adnomyomas (or is it adnomyoma?...I can never get that one right).

Anyway after being told I have stage 4 Endo I cried and cried some more, then cried a little bit more and finally pulled myself together and started to research a heck of a lot. Thus finding this amazing site.

I knew my options, and my gyno/surgeon also discussed them. ie Lupron, hysterectomy, going back on the pill, even getting pregnant might help. She also mentioned bio-identical hormones which I knew a little about from Suzanne Somers endorsements.

So I decided the least extreme choice would be progesterone cream. She prescribed me 400mg per of the cream from a compounding pharmacy. To be measured and taken vaginally. She advised that that is the best way since I have endo, we should target it as close as possible.

That was about 4 months ago. I tell you the difference was NIGHT AND DAY. No more pain, (very little), so much more energy, no more brain fog, and better moods, no more getting constantly sick and getting cold or flu. I was born again. I have to admit that the first month was awful but I read to expect that because the progesterone will "wake up" the estrogen receptors. But to hang in there and the cream will kick in and do its job. Which I can happily say it did exactly that.

Then recently I noticed that all familiar fatigue rearing its ugly head. And I remembered reading in various places that if you have Endo you should ideally start on really high dosage such as 800mg per day to really attack the estrogen load. I also read (I think it was an article by Dr. Lee) that women with endo should ideally not have a break from the cream for a period for at least the first 3 months. So last month I asked my doc if I could use it constantly and she said that would be fine because its a completely safe product to use. She told me to keep a diary of what anything I notice and I'm to see her in February.

At my last appointment I also asked her if she could prescribe me 800mg instead of 400mg because of the endo and she would not prescribe more than that because she said 400mg is the highest dose she can give me.

I did not realize there is a regulation on this cream. If there is where are the guidelines listed? The FDA has not approved this cream so I'm confused.

I'm tempted to go to another doctor and get an extra 400mg from them. But at the same time I think I should be honest with my doctor and I don't really want to start self-medicating without at least some communication from a professional.

But I can feel the cream is wearing off. Does that happen with progesterone cream. I read on some blog this woman who was very anti-bio identical progesterone cream and claimed that it does lose its potency(from her experience and other peoples testimonies)and many women become disillusioned by the cream. She also claims that because of this the result is that your estrogen levels get even higher and stronger.

So is that what's happening to me? Is my 400mg wearing off? And if I tried to get an additional 400mg from a second compounding pharmacy would that have adverse reactions because they may use different ingredients?

All I know is that last night I added an extra 200mg (600mg total) and I feel amazing again. But if I keep adding and then after another 3 months it wears off then I add more and so on...is it just a viscous circle.

I hate my endo. Since I had the diagnosis at least I know I have not been crazy all these years, but that doesn't change the fact that I still suffer from this damn disease.

Also on a side note since taking it constantly without a break I have very lightly bleeding e-v-e-r-y- day for the last 6 or 7 weeks. I read somewhere that Wray said that you should increase the dosage of the cream to stop that.

But I have information overload and I'm not sure which direction to go. Getting a little confused and lost about all of this. I just want a normal life with no interruptions because of fatigue and pain.

Thank you for taking the time to read my story. I hope some the information can help others into feeling like you are not alone if you have the same experience/symptoms as me. I think information is power and communication can help discover solutions.

Sorry if this was a bit long.

Nikki :-)

Comments for Nikki

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Nov 25, 2014
Endo
by: Wray

Hi Nikki What a pleasure to read that your endo prescribed 400mg/day progesterone. I have found if bad that 500mg/day is needed. We do have a page on Endometriosis you could look through. And if you have slight bleeding every day, please take a look at our page on Menstruation. I've found certain nutrients can stop it, there's a list on the page. Progesterone is sensitive to many things, any one of them could be causing a return of your symptoms. These are a few things which cause progesterone levels to drop, or to be less effective……
lack of or drop in Vitamin D
dark days, especially winter, probably because vitamin D drops in winter due to lack of sun
high oestrogen
high testosterone
low SHBG (sex hormone binding globulin), this binds testosterone and oestrogen making them inactive. SHBG drops due to consuming sugars, and all foods which convert to glucose, i.e. grains, legumes, sweet starchy fruits and veggies.
high LH
high FSH
high stress
high adrenaline (comes from Stress or excitement, and a drop in blood glucose), this stops progesterone entering the cells
sugars of any kind
large meals, because of the increased metabolic clearance of progesterone
alcohol, this reduces progesterone levels and increases the androgens, ie testosterone
high insulin
high level of phytoestrogens in the diet
oestrogenic herbs
oestrogen mimics or endocrine disrupting chemicals (EDCs)
contraceptives
HRT
Insulin Resistance
a defective luteal phase
high copper/low zinc
high prolactin
Take care Wray

Nov 29, 2014
Thanks for the warm welcome
by: Nikki

Hi Wray thank you for the warm welcome. Just so you know I'm on a high protein (organic) low carb diet. Increased my fruit and veg. More my veg as I am counting even the sugar in fruit. I've lost 10 lbs in a month through diet and exercise. I need to lose weight for the Endo. Endo is worse when you are overweight. And as you probably know high levels of estrogen flourish in our fat cells. That's why for example obese people are more prone to cancer. I'm 42 years old, 5"3 and 150 lbs now. I intend on losing AT LEAST another 20 lbs.

I take 8000pm Vit. D, 250mg Magnesium at night (because it makes me drowsy), I take NAC (can't remember dosage) I take MSM every night too. I have to admit I do worry about the strain all this pill popping is doing on my liver and kidney. I drink at least 2 to 3 liters of filtered water daily. I've cut back on Coffee a lot (boohoo) and drink only red wine socially.

But I'm still battling this constant bleeding which has all the other yukky symptons with it. I'm on 600mg of progesterone (vaginally) every night. Still has not stopped my bleeding. Its sort of brown small blood clotting bleeding rather than red or pink blood. And my ovaries and hurting constantly. Very Very sore.

Any suggestions would be most helpful. Am I doing the right thing increasing the amount? How long should I continue this regimen before I decide if its working or not?

Thanks a bundle Wray. You Rock!
Nikki

Nov 30, 2014
Endo
by: Wray

Hi Nikki It's good to know you're on a low carb diet, we all should be! But be cautious about eating high protein. We need 0.9 to 1g of protein per kilogram of lean body mass per day. Less than this and our bones suffer, higher, and the protein is converted to glucose which in turn is deposited as fat. Most animal protein sources are about 20% protein, whereas most veggie sources are about 5% protein, but many are very high in starchy carbs too. You might know of it, but in case not see the info about the Ketogenic Diet. These are two more sites to look through here and here. The keto diet reduces glucose levels to the barest minimum, and the body uses ketones for energy. It's a very high fat, moderate to low protein and very low carb diet. Only the good fats should be used, i.e. MCT oil, coconut oil, butter, cocoa butter, olive oil or macadamia oil. The first four are saturated fats, the other two mono-unsaturated fats. The best is the MCT oil, an extract from coconut oil. The body converts the fatty acid into ketones, in fact the brain does better on these than glucose. MCT oil forms ketones more efficiently than the other oils. You should find the weight comes off even quicker. It appears you didn't read our menstruation page yet, as I give the heavy and/or continual bleeding protocol at the bottom. I know it works. You are taking two of the supplements, but taurine is an essential, so too are the bioflavonoids. You should find you don't need as much progesterone, which will also help the pocket! We do have a page on Ovarian Cysts, which can cause pain. Maybe you could pick up a clue from the page. You might try taking iodine too, this is often the cause of sore/cystic breasts and ovaries. Thanks for the kind words! Take care Wray

Dec 01, 2014
ketogenic diet
by: Nikki

Thanks Wray,
I actually had a cyst removed back in May that's how they discovered the Endo during the laparoscopic surgery. The pain I have in my ovaries is the very familiar menstrual pain I have been used since my teens. And I think the reason I am getting them constantly is because I have been bleeding constantly. I must confess I skimmed through the menstruating page but I did not read it thoroughly - there's so much to digest. I need to put time aside, But this is priority because I need to come up with a plan of action for myself.

The ketogenic diet is very interesting. I think I'm kind of pretty much doing a version of it. I take spoonfuls of Olive oil or coconut oil. My nutritionist pretty much said fats are good for me. So along with the low carb, low sugar and high protein I'm pretty much there. Although the weight is not falling off as quickly as I'm reading Ketogenic diet does, but I will research more and I guess I have to be more strict with the science of the regimen.

Thank you very much for your detailed input.
Take care :-)
Nikki

Dec 02, 2014
Menorrhagia
by: Nikki

Thank you Wray for taking the time to write me so extensively.

Having read your page on Menstruation I think I am probably suffering from Menorrhagia. And it looks like the only key things missing for me is Taurine and Bioflavanoids. I will add those to my list.

Also the page recommends taking the cream every hour. Which is a little impractical for me. Not only because of the time but also because as I said before I have to measure it and insert it vaginally. But I will split my 600mg into 3, so 200 in the morning, 200 in the afternoon after work, 200 at bedtime. I'll how I go.

I tried splitting it up between morning and night before and to be honest, I had a bad time of it. For some reason the cream was not as potent as when I take the full amount at bedtime. Not sure why. Doesn't make sense really. But I will do another trial again and try and stick out for a bit longer and note any changes in my body.

I have one more question Wray, if you would kindly tell me your personal thoughts:


Even though my doc prescribed 400pg daily, which I get from a compounding pharmacy. I have increased that dose to 600mg. She will not prescribe more than 400mg and the cost of the compounding pharmacy is $70 each month, so adding an extra 200mg is using up more cream.

If I ordered Natpro and used it in addition to my normal cream, to make up the extra 200mg, do you think the two creams would interfere? My thoughts they would not, but I just want another girls opinion on this. They both contain the bio-identical progesterone so the only difference would be the base ingredients they are mixed with. Otherwise I would not imagine any interference with each other, right?

At the moment I measure 2g of cream to make up 400mg with my normal cream. How many grams would I have to measure with the Natpro to make up 200mg?

Thank you Wray!






Dec 10, 2014
ketogenic diet
by: Wray

Hi Nikki It's taken me so long to get round to replying, but here are the nutrients needed to stop or lessen heavy bleeding….. The amino acid N-acetyl cysteine, vitamin D, taurine…. low levels have been found in women with endometrial cancer, cystic endometrial hyperplasia, fibromyoma (fibroids), and dysfunctional uterine bleeding and bioflavonoids have been found to strengthen capillaries. The Menstruation page gives more info and the dose to take. Take care Wray

Dec 13, 2014
Menorrhagia
by: Wray

Hi Nikki Let me know if the taurine and the bioflavonoids help you, they usually do. But that means nothing really as we're all so different! If you find it difficult to apply the cream more frequently, then don't. I only give that recommendation as it keeps the progesterone topped up, and this can help the pain. The creams won't interfere at all, your reasoning is correct. I'm puzzled you are able to measure in grams, do you have a very accurate scale? I find millilitres are easier to use as the cream is semi-fluid. I generally regard 1ml as 1g, so in the case of 200mg Natpro you'd need 6ml of cream. I'm amazed the cream you are using is a 20% strength, we've not managed to dissolve more than 100mg progesterone in 1ml/g of cream. In fact I've not found another cream that is higher than 10%. Take care Wray

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