Re: Dee and HRT

[Guest guest]

Sandi:

What is a urethral caruncle?

Sherri

-------------- Original message --------------

I have insomnia, sweating, headaches and a urethral caruncle which is often due to low estrogen. .

[Guest guest]

Hi Sherri, It is like a hemorhoid of the urethra. The skin gets so thin that a flap of it protrudes out of the opening. The problem is that it could be a vein problem b/c it has this big red blood vessel in it and I have vascular problems. Estrogen is very bad for vascular problems. But if it is just a normal caruncle then estrogen is very good for it. For me it is a gamble. My hormones are very menopausal FSH- 60, Progesterone - .4 and estrogen < 32, not measurable. Sandi

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[Guest guest]

HI Sandi,

Dr. Vliet says a lot of muscular aches can be contributed to the lack of E. and also how the E can benefit those nerve fibers by making them less susceptible to feeling pain, so it might be part of the problem (and likely in my opinion) I can see where that can tie in as your husband mentioned.

She also says Progesterone can increase the pain of FIBRO as well, because Progesterone can block those receptors as it is an 'anti'estrogenic or against Estrogen and it binds to the brains receptors and decreases Testosterone even more as well as the Estrogen (by the way when I say Estrogen I mean the Estradiol 17 .

They know thru studies that Estrogen and Testosterone are mood elevating and when Progesterone binds those receptors it can be typical for PMS symtoms, moodiness, blues, irritability, aches/pains, bloat, weight gain, etc. to be common with Progesterone as it kicks in midmonth.

Vliet also claims the Estrogen factor (lack of) may have more of a role in triggering FIBRO than anyone ever realized.

And hon with you being peri even before the hysterectomy it makes sense that you're even more so depleted of both the E & the T after the hysterectomy. I just saw your E levels in another post and no doubt you've no E hon, and all of those symptoms you mentioned are a part of it in my opinion. How in the heck can the body work well without the oil and gas that makes it run. *grin*.

Not only the E but the T is lost as well and is just as necessary. (I'm going to add something below about T and Fibro which might be why those aches & pains for you too hon. (meaning your back that you mentioned)

I still can't figure out why you've got the additional P with no uterus, doesn't make sense to 'me'.

As far as symptom improvement and time with adding hormones ? That's probably a variable, but I'd say within a month the hot flashes at least should have left. Just like birth control pills they say to give it a month or two for the body to adjust, (including sometimes breast tenderness with both) But that's for the body not so much for the genital improvement. There's still nothing better to work on 'just' that area than the topicals. NOt saying systemic doesn't help but it's minimal at best.

Here's one piece with a few clips about Fibro & T and a doctor working on a patent for it.

Treating Fibromyalgia with Testosterone

01-14-2004 Source: The Chronicle of Higher Education, December 12, 2003. Report on fibromyalgia research taking place at Dartmouth College.What it is: A way to treat the muscle pain, chronic fatigue, and othersymptoms of fibromyalgia syndrome using hormones administered through a gel.Fibromyalgia, a musculoskeletal pain disorder, affects three million to six million people in the United States, 95 percent of whom are women. There is no known [single] treatment for the disease, the cause of which is unknown.The spark: For Hillary D. White, it was all very personal. An associateprofessor of microbiology and immunology at Dartmouth Medical School, Dr. White was dealing with the stress of applying for a big federal grant when she began to realize how much her back and legs were hurting and how tired she was feeling.She soon recognized that her symptoms were those of fibromyalgia. Because of her interest in reproductive immunology, she knew that hormones like estrogen and testosterone are thought to limit pain.

She also knew that male hormones are anabolic - "they build muscle." (Keep in mind that we as women need toned up muscles and that doesn't mean we'd be a body builder at all) Dee.Then one day she let her mind wander. The symptoms of fibromyalgia, she realized were "eerily similar" to those for low testosterone: chronic fatigue, sleeplessness, and muscle wasting.

"I was lying down at home feeling pain all over and just feeling miserable," she says, when a simple thought popped into her head. "Maybe this is a problem with testosterone."A blood test gave strength to her theory. While most healthy women have low levels of testosterone, Dr. White's were extremely low. "Undetectable," she says.Under treatment from a fellow Dartmouth physician, she began investigating testosterone. The results "were immediate and enormous," she says. Soon after, she applied for a patent......Dartmouth chose Bentley because the company had already developed a technique for administering testosterone through the skin by use of a gel, but the company hadn't firmly settled on the kinds of ailments it hoped to treat. "We had the symptoms; they had the product," says Dr. White...............Meanwhile, Dr. White continues her research. She suspects that other hormones might work as well or better in treating fibromyalgia. "I don't think testosterone is the entire story." -Goldie Blumenstyk. The website of the Dartmouth Medical School ishttp://www.dartmouth.edu/dms/index.shtml.

Sure hoping you can get those hormones straightened out. *sigh* and unfortunately the only way is to get those blood levels tested over and over if need be till you get into an optimal not barely functional mode. I'd get the Estradiol and the Testosterone tested and it's the 'total' T as well as the 'Free & Unbound' T.

Hugs hon

Dee~

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[Guest guest]

HI Sandi, just curious hon when you said: " Estrogen is very bad for vascular problems" I've never heard that.

In fact from what I've read since it keeps not only the external skin pliable and healthy it also works that way on the interal arteries, veins, etc. to keep them elastic as well and why it can be beneficial even for the heart.

Ummmm ?

Dee~

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[Guest guest]

Sandi..... with your estrogen so low, it could very well be that you will feel nothing but good effects from HRT. I still wouldn't use the progesterone , it it was me

It could also be likely that with estrogn that low, that you were very low even before the hysterectomy and that has been contributing to your problems both V and urethral. Low estrogen can also be a contributing factor in frequent yeast infections, but I know you know that already.

Dusty

-----Original Message-----From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of Sandi SharpSent: Friday, July 14, 2006 9:08 AMTo: VulvarDisorders Subject: Dee and HRT

Hi Dee,

I got my Rx for compounded natural biest w/ progesterone. I was wondering how long it will take for general menopause symptoms to go away. I have insomnia, sweating, headaches and a urethral caruncle which is often due to low estrogen. I know for your v pain it months of topical estrace for you to be pain free but am curious as to how long it generally takes for those other menopause symptoms to improve.

I also have this weird skin burning on my upper back and chest pains - like the pectoral muscles are aching. My husband thought this could be due to low estrogen too. Have you ever heard of anything strange like that?

I am only 40 but was in perimenopause before the hysterectomy and now it has been over a year. I kept my ovaries but I know that in most women they shut down anyway shortly thereafter.

I am not sure if my syptmoms are even due to the menopausal state. They could be dieoff from the new supplements and meds. I was never very good with meds as you know.

THANKS,

Sandi

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[Guest guest]

I would like to counter Dee's statement covering the last 3 sentences below. My reduction in V pain from a daily 24/7 (DV) varying from 5-7, to a daily 1-2 and sometimes not even noticing, came from HRT and not topical estrogen. So there are those of us who can get what we need from the HRT. We often hear that many of have estrogen receptors missing in the V skin and hence the curative powers of topical E. I just think that some of us don't have the receptor problem, just a dreadful lack systemic estrogen which can affect the whole body, including the V skin and vaginally .

Dusty

-----Original Message-----From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of DeeTrollSent: Friday, July 14, 2006 1:09 PMTo: VulvarDisorders Subject: Re: Dee and HRT

As far as symptom improvement and time with adding hormones ? That's probably a variable, but I'd say within a month the hot flashes at least should have left. Just like birth control pills they say to give it a month or two for the body to adjust, (including sometimes breast tenderness with both) But that's for the body not so much for the genital improvement. There's still nothing better to work on 'just' that area than the topicals. NOt saying systemic doesn't help but it's minimal at best.

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[Guest guest]

I Agree Dusty there are always exceptions to everything. *smile*

I know it's helped you by using it systemically and I really am so glad that's worked so well for you. I know of all the hell you've been thru.

I am going not only by my own experience but by a Cont. Med Ed. class given by 4 physicians to physicians and in there they emphatically stated how it almost always has to be used directly and locally to be of benefit and even suggest it for those who are not menopausal for that reason.

Then there are those articles that talk about a study group that showed a 'significant decrease' in estrogen 'receptor' expression (over all) , and 50% of the samples did not exhibit 'any' receptor expression. <(click) (there's also one on T. 'receptors' lacking and V pain too)...

But believe me is If it works using it systemically that's great! I wish I only had to do one source myself believe me.

Whatever works is bottom line.

I just know my own blood levels were always fine (being on HRT) and I knew my levels because I kept tabs and tests done on them and it didn't help 'me' one bit till I applied those hormones topically. That's why just as you mentioned Dusty we are all different so we try and if it doesn't work, try something else.

Hugs hon and glad you mentioned that. Dee~

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[Guest guest]

Hi Dee, Pelvic congestion syndrome and endo are both made worse by more estrogen. The hormonal changes that occur during puberty, pregnancy, and menopause, as well as taking estrogen, progesterone, and birth control pills can cause a woman to develop varicose veins or spider veins. http://www.varicoseveinsindia.com/faqs.html#1 Women with pelvic venous congestion syndrome also have a higher incidence of ovarian cysts, an enlarged uterus and a thickened endometrium (lining of the uterus) - all of which may be hormonally induced. And since it’s been found that estrogen-inhibiting relieve the symptoms of pelvic venous congestion syndrome, more researchers support the theory that pelvic venous congestion syndrome is at least in part caused by hormonal dysfunction. http://www.via-med.com/pelvicpain.aspx Estrogen nce can trigger more estrogen-dependent conditions, such as fibroids, endometriosis, and various estrogen-dependent cancers. http://www.webmd.com/content/article/85/98744.htm I know you think estrogen is great and you are an expert on this. But in people who have estrogen dependent diseases it can make those conditions worse. That is why I am so scared but I also know that my hormones could be contributing to the fibro. A viscious circle. Remember when I did the Vagifem and later the oral estradiol and ended up in the ER, It has never been a friend to me. But them again I was not menopausal at that time. Thanks for the information. I'm sure I'll have

many more questions! Love, Sandi

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[Guest guest]

Hi Dusty, I hope you are right and the systemic helps me! Glad to hear it helped you. Topical estrogen flared my pain. Nightmare.Thanks, Sandi

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[Guest guest]

Sandi and everyone,

It is not true in all cases that endo is made worse by estrogen.

I also have PCS and it hasn't been made worse by or more

estrogen.

Many of the sites out there that talk about endo for example

(and other conditions) are stating the opinion of the author.

Every case is different which is why Dee said what she did about

the estrogen.

As for the issue of ovarian cysts and pelvic congestion syndrome

again that's not necessarily true. I have had issues with cysts

just b/c and also b/c of having PCOS.

Also, there are different kinds of fibroids and not all of them

are made worse by estrogen.

Point being that everyone is different and why most research is

based on opinion not fact.

Kristy

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[Guest guest]

Hi Kristy, I don't know much about PCOS b/c I don't have it, but most everything I have read about endo says that estrogen makes it worse. So yes, there are exceptions, but the opinion of many authors is that estrogen makes it worse. The same with pelvic congestion syndrome. There are many diseases where decreasing estrogen production is a treatment. Like Lupron for endo or anti estrogen meds for breast cancer. I think what we should strive for is a normal level of estrogen used by our cells. I think too little or too much can both cause problems. That is my problem. If my V pain is caused by pelvic congestion then estrogen is bad. ALl I know that prior to my hysterectomy estrogen in all forms swelled up my skin, turned it bright red and sent me to the ER for morphine. So I am scared to try HRT. But then again those were the days prior to the hyster

so my levels were different. Also I never tried a compounded cream with natural progesterone. Hopefully it will help. Please keep your fingers crossed! Sandi .

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[Guest guest]

HI Sandi,

Hon thank you for that info, I guess I was just thinking strictly vascular and not the term 'pelvic congestion'. You are right no doubt about it hon... there are certain conditions that one just shouldn't be on extra Estrogen.

For instance those who may get blood clots for one, or excessive proliferation of the uterus, and I wasn't that aware of what you just mentioned hon, but I sure know enough men who have varicose veins and huge ones (Why do they love to wear shorts *chuckle*) so I can't say for sure E contributes to that or pelvic congestion for them.

(Tho they do get 'blue balls' *smile*) and I saw that mentioned with women too if they don't climax they'll get the pelvic congestion. Those with PCO 'typically' shouldn't be on E either (but may be) and no doubt there are other conditions as well. So there are always circumstantial things that can come into play.

It's interesting about E & fibroids though, mine has diminished over time from a fairly lg one all my life to almost nothing (checked last month again with ultrasound) and that was when I was (and still am) adding E & T... (and high doses) for the past 15 yrs or more, so for what that's worth.

When I suggest something or send on reports etc.etc.etc.. those typically are for an overall generally healthy person, one who doesn't have a lot of other health problems in addition to the V pain. And as we all know, there are always exceptions to any rule and it doesn't matter if it's just one person, I'd hate to be that one person, no doubt it.

When you think about it those chosen for a particular study or something sent on that's published, generally don't have other major problems else they likely wouldn't be used and there are usually a lot of criteria one has to meet before being put in one of those clinical trials. Not only to not skew up their study but for the safety of the person as well. (Of course it all depends on what they are testing for no doubt)

And come to think of it, it's probably the case with many who've been here for so long and just haven't been able to find an answer because their problems are myriad and one or two or even three things that might work for most people are just are not going to be the answer for that type of a patient, sad as that is to say.

That's when I really feel the frustration a doctor must feel and wanting to help so badly BUT... where to even begin? Of course there's no way any of us would ever know what someone else may have over and above the V pain, and why we must always question, question, question, no matter who it is or what might be suggested.

That's why we must do our own research. We must!

Look at the things we've all learned from so many like Arline, Dusty, Hollis, Kristy, Tami and so many more, even you yourself hon for instance, not that many necessarily have need of 'that' particular thing or area, but if there's just one that does, what a miracle that could be.

I can't say I have any of the problems you or they have but what I've learned from all of you is phenomenal and if the time ever comes, I KNOW who'll I'll ask advice from, *smile* it'll be those who have been there and have the expertise, but each of us offers up a sincere opinion simply to be 'considered' ranging from diets to surgery, to thyroid, to hormones, to endo, to antidepressants, to PT and on and on, and the bottom line and only agenda is always trying to help another sister in pain.

I just am so sorry that you're not able to use the E hon and yet our bodies function on E, (not alone of course) and there's not one part that doesn't need it from the brain on down.... so I sure don't know the answer hon. *sigh* No doubt it puts you in a quandry between a rock and a hard place Sandi. *sigh* My heart really goes out to you, I'm just so so sorry and only wish I could help. ;**( sob sob.

BIg hugs and I hope this new clinic is able to help. I just wish you the very best hon, always!

Dee ~

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[Guest guest]

Thanks Dee, I am going to try the HRT in a couple of weeks when I get back from vacation. I pray it will help. My levels are so low and I do think that we need a balance - not too much, not too little. Maybe before I had too much.It is just very scary. You are so right about the other health problems. Before this I was fine. I had endo but I didn't have pain from it - just infertility. Now I have fibro, IBS, yeast, pelvic congestion, a blood coagulation disorder, very low immunity markers, Lyme, and possibly related Epstein Barr and HHV6 viruses. All of these problems are related to fibro /Lyme. It sure is frustrating b/c I have done everything all of the successful ladies have done with No benefit and usually only got worse. For example, Dr. Peacocke had me do estrogen with Vagifem and then oral estradiol and I ended up not

sleeping for weeks or eating b/c the pain was so bad and I needed morphine. Who gets like that? Just me. Other treatments have produced similar results. Chinese Herbs made me have a nervous breakdown from the pain. This leaves me afraid to try anything but I keep trying b/c I can't stay like this forever. The FFC wants me to take so many things - miralax which is working somewhat for the IBS - lumbrokinase, Lamisil, jarrodophillus, Leuko-Stim supplement to improve immune function, Mitomax to improve mitochondrial function, melatonin and Trazadone for sleep, nutritional IVs and injections of immunoglobulin, thyroid hormones, HRT, Namenda for chronic pain, nortriptyline, cortisol compounded and more. I have just taken the first 9 with no increase in V pain - although it still is terrible-but major fibro symptoms that I never ever had - like insomnia, brain fog, chest pain, back

burning, terrible constant head ache. I just don't know what is causing that. And to make it worse some of the supplements have 10 + herbs in them!!!! Then after I get on all this they will give large doses of antibiotics to get rid of the Lyme. I have decided to start each thing and give it at least 5 days to see if it will make me worse before starting something else. But I live in a state of terror with all of these meds and their potentially lethal side effects for me - when the pain gets so bad I get suicidal. Oh well, I just have to keep trying. Thanks for your support. Love, Sandi

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[Guest guest]

Sandi, may I make an observation here. I believe that then - when you used the estrogen before (which has been a few years now) at least 2 things were very different from today.

1.) You had a rare undiagnosed form of yeast (which was pretty chronic until you had the typing and sensitvities done). Estrogen can (and in my case did) feed yeast and make it worse. Is it posible that your use of estrogen caused this reaction? It did in me and I didn't have rare yeast. In other words, your rare yeast was always present - sometimes worse than others - but MUCH worse when you used the estrogen because of the effect of estrogen on yeast. ( P.S. There is confusion among professionals about when yeast is aggravated by estrogen and it seems that an imbalance of any kind - too much or too little estrogen - gives us a tendency for yeast).

2.) My sister had a hysterectomy - everything removed and then some bits and parts of organs be because of her endo - and yet she takes 17b estradiol without problems. She does not use progesterones or biest or triest - just straight 17b estradiol in the patch form.

3.) If in fact you were perimnenopausal before your hysterectomy - you may well have been estrogen deficient and the introduction of topical estrogens could have started the yeast chain reaction. For this reason, I avoid topical and internal yeast.... but as I said in my earlier post, perservering with my doc to find the "right" dose for my body of estrogen patch has done the trick for me. It wasn't a quick process so I'll warn you ahead of time. It took nearly a year of trial and error to get the right dose, but in the end it was worth it - though sometimes DURING the process, it was VERY frustrating.

Dusty

-----Original Message-----From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of Sandi SharpSent: Friday, July 14, 2006 8:58 PMTo: VulvarDisorders Subject: Re: Dee and HRT

Hi Kristy,

I don't know much about PCOS b/c I don't have it, but most everything I have read about endo says that estrogen makes it worse. So yes, there are exceptions, but the opinion of many authors is that estrogen makes it worse. The same with pelvic congestion syndrome. There are many diseases where decreasing estrogen production is a treatment. Like Lupron for endo or anti estrogen meds for breast cancer. I think what we should strive for is a normal level of estrogen used by our cells. I think too little or too much can both cause problems.

That is my problem. If my V pain is caused by pelvic congestion then estrogen is bad. ALl I know that prior to my hysterectomy estrogen in all forms swelled up my skin, turned it bright red and sent me to the ER for morphine. So I am scared to try HRT. But then again those were the days prior to the hyster so my levels were different. Also I never tried a compounded cream with natural progesterone.

Hopefully it will help. Please keep your fingers crossed!

Sandi

..

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[Guest guest]

Sandi,

Antibiotics don't get rid of Lyme. I know b/c I have a friend

who has Lyme and she has to get antibiotics often to keep it in

check.

Also, yes, you are on too many medicines. That's also why it

says on their (the FFC) site that you need to check with your

physician (meaning your local physician) b/c of the potency of

some of those things. Also, you should have started those

things one at a time so that in case you have some kind of a

reaction so that you can trace which one it is.

Also, as for the issue of your fibro symptoms, whatever you are

taking right now may be similar to Guaifensin which is causing

you to cycle which means that you will get worse before you get

better if the stuff works.

Kristy

__________________________________________________

[Guest guest]

Good points Dusty and something I hadn't thought of. *sigh* Dee~

----- Original Message ----- From: Dusty

Sandi, may I make an observation here. I believe that then - when you used the estrogen before (which has been a few years now) at least 2 things were very different from today...........

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