How do you deal with the anxiety of this day to day?

lee12629 · 2015-11-24T04:46:31.247+00:00

I think about this almost 24 seven.Some days I just sit around the house trying to avoid symptoms.I feel like im stuck as I still dont know how bad it will get,can I deal with this or should I give in and start the hrt..so many unknowns.Any words of advice.Its almost Christmas and I need to focus on things besides this.Thanks.

lee12629 nancyo

Posted 8 years ago

I talk so much on here i confuse things..are you on the vagifem.I have heard the vaginal ring works very well and i beleve it only has to be replaced every three months..im still leaning towards vagifem.at least the hrt is supposed to help bladder issues.i am trying to get through the holidays before i try an hrt in case i have side affects.I am sitting here in a nght gown comando again waiting for hubby to come home and say..didnt you get dressed today.that causes stress,plus hes sick of medical bills. cant wait to pay for the meds as i know they are expensive,but without your health there isnt much quality of life..so its spend the money or continue being miserable.

Sus28 lee12629

Posted 8 years ago

Yes I had a ring and it's every 12 weeks.

got myself off it now though.

lee12629 Sus28

Posted 8 years ago

Are your symptoms better?How long were you on it?If symptoms come back will you go back on it?I guess some people use it as long as they need to.Do you worry like I do that if you dont take it the symptoms will continue to worsen.Thats why im leaning towards taking it,I cant imagine letting my stmptoms get worse when i could feel fine.

Sus28 lee12629

Posted 8 years ago

I a pleased to get off it as every 3 months I had to take tabl

ets to have a bleed and I really didnot like that. Symptoms were up ,and down on it.

lee12629 Sus28

Posted 8 years ago

I dont understand what you mean when you say to have a bleed?

Sus28 lee12629

Posted 8 years ago

Yes . Ok. Will tell you out of me head but if you need names of the tablets etc, I will look it up tomorrow. The consultant told me that if I had the ring then I would have to take tablets to have a bleed three times a year. This made me feel uncomfortable and so that is why I stopped having the ring.

lee12629 Sus28

Posted 8 years ago

Wow ive never heard of that,thanks for the information.Definitely will help me to decide what to try if i try something.

lee12629 Sus28

Posted 8 years ago

I looked up the need to take tablets to bleed every three months if useing the ring..sus i honestly could find nothing mentioning that in the net..anyone else know about this???

totallytiffy1 lee12629

Posted 8 years ago

I have heard of this but don't know name of drug as several years ago a Dr told me the same thing and that I was thin skinned or whatever and it all sounded crazy to me. Like something bad would happen if I didn't take this rx. I didn't but I got second opinion. It was a mess. Wish I could remember

lee12629 totallytiffy1

Posted 8 years ago

Well no need for such a thing with the vagifem right?

tracy12090 totallytiffy1

Posted 8 years ago

Hi, is thin skinned, a medical condition?

lee12629 totallytiffy1

Posted 8 years ago

Well i have searched and searched and cant find anything.will ask doc in a few weeks as i weigh my options.

totallytiffy1 tracy12090

Posted 8 years ago

That's what the Dr said I was inside

totallytiffy1 lee12629

Posted 8 years ago

Right. And as I research vagifem and estring are often prescribed for cancer patients due to being lower dose than premarin or estrace cream. See how we all must be a step ahead of doctors.

tracy12090 totallytiffy1

Posted 8 years ago

Thanks I have a similar problem inside and was wondering now with the lack of oestrogen it maybe affecting the vaginal skin also.

lee12629 totallytiffy1

Posted 8 years ago

I read the same thing.sounds like the vagifem is the safer.

chris00938 lee12629

Posted 8 years ago

I'm just wondering - I might be on the wrong track but the warnings with vagifem include the risk of endometrial cancer (which you know I got) but they say that women who have a uterus should also have progesterone to reduce that risk so is that what causes the 'menstrual' bleeding, I wonder? I might be way off on that though. I don't think many doctors normally give progesterone when giving vagifem though, but perhaps the estrogen ring gives a bigger dose so makes it more necessary?

lee12629 chris00938

Posted 8 years ago

Progesterine is usually only necessary with an oral HRT..at least thats what i think i read

lee12629 chris00938

Posted 8 years ago

Your doctor pretty much overdosed you on the vagifem.I read an article just published a few days ago about doctors trying to get the black box warning changed on the low dose treatment.Its on the net,something about the fda hadnt had time to delve into that enough..were concentrateing more on oral hrt.Docs are mad because label is frightning women into not using treatment and having fear of what most in the medical community feel very comfortable calling safe.

chris00938 lee12629

Posted 8 years ago

That's actually what I previously thought, but if you look on the Vagifem site it said on there about using progesterone in women with a uterus? They seem to talk about HRT being anything using hormones - oral or topical?

chris00938 lee12629

Posted 8 years ago

Oh yes, I agree! BUT, having said that, when I looked at the prescribers information after I had my op I was shocked to see the warnings by vagifem and that was at the recommended dose.

Sus28 lee12629

Posted 8 years ago

I had to take progesterone 3 times a year when on the vaginal ring

chris00938 Sus28

Posted 8 years ago

Ah that's what I was thinking. I wonder if the ring gives a higher dose than the vagifem pessary, so GP's are being more careful to balance it with progesterone to avoid the risk of endometrial cancer.

lee12629 chris00938

Posted 8 years ago

Gosh i dont know,my doctor never talked about having to use it..thinking they just put the same warnings In as the oral.One site i read yesterday referred to vagifem,premerin cream as being labled something totally different then hrt.Maybe its a case by case thing.The article i mentioned about the warning is dated nov 25 2015

lee12629 tracy12090

Posted 8 years ago

Are you talking the vaginal or vulva..yes thats what atrophy is the tissue becomes thinner

lee12629 chris00938

Posted 8 years ago

I just read its typically not necessary,usually only in cases where the endometrial lining has built up too much,and even then not always necessay.I just typed in,is it necessary to take testosterone with vagifem?

lee12629

Posted 8 years ago

I meant progesterone lol

Sus28 chris00938

Posted 8 years ago

Probably chris

will look up the dosage for you

tracy12090 lee12629

Posted 8 years ago

The vulva is where the skin has thinned now. I had more symptoms vaginally previously. Hrt seems to only have slowed the process. I wish the consultant had warned me of the effects better of removing my ovaries other than hot flushes & mood swings, I wish that was all!

chris00938 lee12629

Posted 8 years ago

LOL! I only just got down to that before replying Lee LOL! I know - it's all very confusing.

What I've taken this from is under the 'full prescribing information for Vagifem' and what I found after I'd had my hysterectomy and this is by vagifem themselves:

Vagifem

®

(estradiol vaginal tablets)

2

FULL PRESCRIBING INFORMATION

WARNING: ENDOMETRIAL CANCER, CARDIOVASCULAR

DISORDERS, BREAST CANCER and PROBABLE

DEMENTIA

Estrogen-Alone Therapy

Endometrial Cancer

There is an increased risk of endometrial cancer in a

woman with a uterus who uses unopposed estrogens.

Adding a progestin to estrogen therapy has been

shown to reduce the risk of endometrial hyperplasia,

which may be a precursor to endometrial cancer.

Adequate diagnostic measures, including directed

or random endometrial sampling when indicated,

should be undertaken to rule out malignancy in

postmenopausal women with undiagnosed persistent

or recurring abnormal genital bleeding

[see Warnings

and Precautions (5

chris00938

Posted 8 years ago

I don't know if the link will be allowed to go through, but I'll give it a try: http://www.novo-pi.com/vagifem.pdf

chris00938

Posted 8 years ago

I've just attempted to put the link to the full article but it has to wait to be moderated. While obviously I'm going to be somewhat biased against vagifem because of my situation if I was starting again now I'd have other questions, such as how long will I expect to be on it, because it says to use it for the shortest possible time, and what happens when I come off it - does everything go back to how it was or will the benefits last for years? Having said all that, if I was going through what some women are with the UTI's etc. and no other answers were found I probably would consider it because I'd way up my life being badly affected NOW compared to what MIGHT or MIGHT NOT happen in the future - after all, none of us know what will happen in the future! It was easy for me to say I never would have had hormone treatment in the first place because of my mother having breast cancer, but then I never had anything like the problems some women are getting! I was told that I have atrophy and that the skin is thin and that worries me slightly because of the prolapse pessary which obviously puts more stress on the skin (and add that to the connective tissue disorder and that leaves another question mark) but I'm not actually getting any problems so far. So I think this is something that everyone has to weigh up for themselves. If the alternatives have been tried , especially the hyalaronic acid possibilities, and nothing has worked then you just have to make an informed decision. A lot of the meds we take have serious side effects and risks but if it makes that much difference to quality of life, sometimes we have to bite the bullet and hope for the best, if you know what I mean. I certainly wouldn't want to live my life with constant UTI's and discomfort. I hope that's giving it more of a balanced view. I wish all GP's would have this sort of discussion though because mine certainly didn't. All I got was 'it's absolutely safe - there is no risk at all' even with the triple dose she'd put me on for 16 months!

chris00938 tracy12090

Posted 8 years ago

Thin skinned is part of atrophy.

chris00938 Sus28

Posted 8 years ago

I don't know what the dosage of progesterone is because I was never given it. I think you're right Lee, in as much as it often isn't given along with vaginal estrogen, despite it saying in vagifem's warnings that if there is an intact uterus there's a risk of endometrial cancer without progesterone. I suspect this is something where the GP's guidelines differ from the manufacturers guidelines, but if I were thinking of using vagifem, then I'd certainly at least ask the GP about that aspect.

tracy12090 chris00938

Posted 8 years ago

As you say there are so many symptoms and individual experiences. You tend to only look for information when you experience it. It's should really be the Dr's job to educate us the NHS site mearly mentions bleeding, pain and irritation hardly covers the symptoms. My Dr never even gave my symptoms a label till I actually asked if it was VA that was after my own research!

Sus28

Posted 8 years ago

My ring was Estring 7.5 micrograms 24 hour vaginal delivery system. I ring lasted 3 months.

then I had to take progesterone 3 x a year. I felt unhappy about the whole thing so got myself off of it after a year

it was not a fantastic cure to VA

i never felt that all symtoms went with it in.

doing ok at the moment

been off the ring about 10 weeks.

i took it out when I had pylonephritis as it made me feel even more uncomfortable at that point and I wondered if it had contributed to the infection

Sus28 tracy12090

Posted 8 years ago

You are right there Tracy.

lee12629 chris00938

Posted 8 years ago

Wonderful comment and food for thought.Also great questions to ask . Thank you.

chris00938 tracy12090

Posted 8 years ago

Actually my experience was exactly the same Tracy! My GP had mentioned skin thinning when she was changing my prolapse pessary before I had the hysterectomy and repair, but I wasn't aware that was atrophy! It was just 'think skin' as far as I was aware and didn't affect me at all (but interesting that she was still saying the same thing after 16 months on vagifem!) but it was only after the hysterectomy when I asked at one of the cancer check ups if I had atrophy and was told I did, and that's what thin skin was!

chris00938 Sus28

Posted 8 years ago

That's interesting Sus. It IS a higher dose than Vagifem, which is every day for the first two weeks at 5mg, but then it should be dropped to twice a week I THINK. So I guess that's why GP's often don't give progesterone as well, and even my overdosage of Vagifem wasn't as much as that. Before the current Vagifem it used to be a 10mg dose which they took off the market (I guess because of more problems of endometrial cancer etc.) and reduced it to 5mg, or perhaps they just found that 5mg worked as well as 10. I don't know. I certainly had vulval irritation when on Vagifem and a heavy discharge, but don't now.

lee12629 chris00938

Posted 8 years ago

I believe in 2010 vagifem was dropped from a dose of 25 mcg to the dose now given of 10 mcg..i believe thats current,maybe im wrong

tracy12090 lee12629

Posted 8 years ago

That is correct I took a short course at 25mcg when I had ovaries which worked well to alleviate early VA. Which seemed to cure my symptoms then. But a couple of years later it had changed to 10mcg and I had my ovaries removed which Sent me into full menopause immediately.

chris00938 lee12629

Posted 8 years ago

Lee, you are absolutely right - I'm having a 'where's my brain gone' day! Sorry for the confusion!!!

tracy12090 chris00938

Posted 8 years ago

Hi it's not working now as my ovaries are gone unfortunately they took them when I had a hysterectomy. Since then the atrophy has not been fully managed by Vagifem alone this was why I'm on Livial too. I'm now experiencing urethra pain which as far as I can see here is the next step in VA :-(

chris00938 tracy12090

Posted 8 years ago

I've read that some women on the HRT pill need extra help vaginally too - that doesn't always sort it out completely, so I guess that can work both ways - Vagifem on it's own doesn't always sort it, but then neither does HRT on it's own sometimes. It really shocks me, over and over again, that women have been dealing with this for so many years and are STILL struggling with these issues because there doesn't seem any simple answer to it. I'm thinking that the hyalaronic acid pessaries that are said to work almost as well as Vagifem, but without the risks, probably aren't going to reach the urethra either. If GP's say Vagisil doesn't reach the endometrium (although I know Vagisil say it is systemic to some extent, especially in the first two weeks when a stronger dose is taken because it's daily then) do GP's expect it to help the urethra/bladder then? That's a pretty big question! I can't understand how they can say it only affects the vagina in one breath but are expecting it to help the bladder too???? Or maybe they don't expect that???? So can't they offer anything for the bladder and urethra????

chris00938

Posted 8 years ago

I've just read a very interesting article on colarado women's health, about Menopause and Urinary Symptoms but I'm trying to fathom this bit 'Systemic HT (taken orally and affecting the whole system) may reduce the urinary symptoms of urgency, frequency, nocturia and painful urination, but there is continuing debate about the effectiveness of systemic HT in treating urogenital atrophy.' This might be useful though: However, some women are not able to have HT for any menopausal urinary symptoms such as women with breast cancer. For symptoms of vaginal atrophy, they can use vaginal moisturizers for normal relief and vaginal lubricants to relieve dryness prior to intercourse.

Non-hormonal treatments for bladder control symptoms, including those related to pelvic organ prolapse and weakening of the pelvic floor muscles, can involve lifestyle changes and medical procedures. These include:

Reducing caffeine

Bladder-training techniques that increase the capacity to hold urine, control the timing of urination, and control body functions with the help of a machine (called biofeedback)

Maintaining a healthy weight

Avoiding stress to the pelvic area and doing Kegel exercises

Electrical stimulation of the bladder muscles

A pessary device inserted in the vagina to help hold up a prolapsed bladder

A device placed in the urethra that blocks leakage

Various surgical techniques to restructure support for the prolapsed organ.

I hadn't heard of some of those. A couple of people have mentioned Black Cohosh to me over the past couple of days and said that worked for them with menopause problems but I don't know how effective it woud be for VA. Might be worth looking into though.

chris00938

Posted 8 years ago

This, from parkhurst exchange, puts another side to it and answers the question about what happens when you stop using it: While it was previously thought that an intermittent progesterone challenge every three months or so was necessary to protect against endometrial hyperplasia, current dose recommendations and lower absorption properties of the newer agents now make this unnecessary. When a vaginal estradiol tablet (10 mcg), a slow release vaginal ring (7.5 mcg per 24 hours) or 0.5 g (0.31 mg per dose) 2x/week of conjugated estrogen cream is administered, the risk of endometrial hyperplasia is negligible. The ease of use of tablets and rings becomes an advantage for greater compliance.

Because of the chronic, progressive nature of vaginal atrophy, treatment should be continued almost indefinitely, regardless of the method of vaginal estrogen delivery. Cessation of therapy almost invariably results in recurrence of all the symptoms that necessitated treatment in the first place.

chris00938

Posted 8 years ago

This bit followed that last bit I posted 'Local estrogen therapy is generally well tolerated, although breast tenderness can occur, particularly with the use of estrogen vaginal creams. A reduction in dosage is usually all that’s required, although you may want to consider switching to a product with lower systemic absorption properties.' - so if there is breast tenderness there has to be systemic absorption!

How do you deal with the anxiety of this day to day?

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