Menopause Matters Forum
Menopause Discussion => Personal Experiences => Topic started by: Rose on September 25, 2013, 04:56:08 AM
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Hi everyone, I thought I read something about putting on weight around the tum due to the extra oestrogen, or did I imagine this? I am slowly adapting my body to oestrogen cream but seem to be putting on weight around my stomach, which being very thin, looks odd. My breasts are also very tender like the times I was pregnant. Has anyone else had these symptoms?
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Which cream are you using Rose as Vagifem are in pessary form. Do you have a leaflet which describes side effects? Breast tenderness is common in all of the HRT preparations and some can cause bloating.
Taz x
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I've not heard of this yet but can only add that my stomach bloats up and down according to it's own whims and what I have eaten/how stressed I am. I use Vagifem and Ovestin.
I have read of people saying that Vagifem causes stomach pain, maybe there is a link. Perhaps some are more affected than others, like any other drug I guess.
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Hi, have been in bed with a terrible cold so haven't been able to reply. I am using cream made at compounding lab which is like Ovestin. Just thought I'd read on this site that it was a side effect. No leaflet but I expect the breast tenderness is down to cream. Thanks for replying ladies!
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Hello Rose,
Can't help with your problem, but can I ask about the cream you have compounded?
I have reacted badly to ovestin/gynest/vagifem. Gynae has told me that I react to the preservatives in the cream. However, there seems to be nowhere in the UK that supplies compounded cream.
Am I right in assuming you do not live in the uk? If you do, can I ask how you get the compounded cream?
Sorry to be cheeky!
Hope you get sorted.
Thanks...Echinacea
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Hi Echinacea
I live in Australia but I will try to find out if you can order the cream. I have been using small doses, every day, and it seems to be working as I am allergic to all the things they put into vagifem/ovestin, this is wonderful. It was prescribed for me by a specialist in menopause, from a firm in Sydney. It's not cheap (around $50 a tube, which is 25 pounds for you) but I am at that stage that if it works, I'll buy it. I will ring my doctor on Monday if you are interested and find out if you can get it online.
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Hi Rose,
Thank you so much - that would be wonderful. Like you, vagifem, ovestin, gynest etc have all given me awful reactions. Here in the uk, for some ridiculous reason, we cannot get compounded creams. So if we can't use what there is, what can we do?! I know there are others like me on this site that have the same problem. I would be so grateful if there was something I could get online. I know that I could get a cream from USA, but it needs a private prescription. Have asked gynae about that, but is will not do it! They are so tied to the NHS here, and I have been unable to find a private doctor to prescribe.
Any help with this at all would be a life-saver!!!!
How are you settling on the vagifem now?
Kind regards
Echinacea
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Hi Echinacea. I am using a cream similar to ovestin but without all the stuff they put in it. The doctor has instructed me to use a tiny amount every day and I must say, 2 weeks on, the results are amazing. Not sore or itchy vaginally and my breasts seem to have become fuller (if tender). As it's the weekend I can't phone doctor but will do that for you tomorrow. Here's hoping you can order. If I find out anything in meantime I will let you know.
Rose.
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Hi Rose,
Thank you so much!
Your help is very much appreciated.
Echinacea
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Hi Echinacea
The cream sounds like a good idea - something like this ie a hypoallergenic version - should be available in UK shouldn't it?
I was just wondering what you were allergic to? You said the gynae said you were allergic to preservatives in the creams - but as Vagifem is a tablet it doesn't have the same sort of ingredients in it and is quite different as far as I can see ( not that I'm a chemist!).
I would have thought that any cream you buy would have to have preservatives in it otherwise it wouldn't keep?
In your position, if you want to have vaginal oestrogen have you thought of trying the estring which doesn't have anything like that - it just releases estradiol slowly into the vagina? Just an idea
Hurdity x
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Hi Hurdity,
Thanks for your reply.
I do not know what I am allergic to, just about everything I think! I have tried vagifem, and it burned and irritated. I have tried the estring. Brilliant idea, could not believe it, but after three days, vagina dried up, and became inflamed and sore. Gynae said it was the silicone the ring was made of, that was the problem.
All the gynae says is that there are 'fillers' in everything, and I must be hyper-allergic. He thinks it is the preservatives, but does not really know.
It is so annoying! When I read on the internet articles about vaginal creams etc, other countries do compound, and use a base that is inert, like olive oil. I believe the cream will last a month once opened.
Have been trying for about three years to find an answer to this.
I do get frustrated when I think that if I lived in USA, for example, it may not be a problem.
I would go private, in desperation, and purchase from USA, but can't afford it.
Thanks for your interest.
Echinacea
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Echinacea, I got in contact with the compounding lab but unfortunately they only prescribe for doctors. I am so sorry. I know how it feels to be allergic to the fillers and yet everyone else seems to be fine on them. You almost feel as though your body is acting up but what you're experiencing is very real. I am sorry that I can't help but hope you find something soon. Just a thought, have you tried a Homeopath Doctor as they are usually clued into the more natural things? France is brilliant at homeopathic meds and it's easier to get them from there. Please let me know how you are going.
Rose.
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Hi Rose,
Thank you so much for trying! I really appreciate your efforts.
Yes, you do feel as though your body is being very awkward.....and most other people do find something in the end.
I have not thought of homeopathy - I will look into it.
In the meantime... struggle on!
I hope your vagifem belly settles down.
Thank you again, I will keep in touch.
Echinacea
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YES YES YES I have had a flaT TUMMY ALL MY LIFE
I WAS THE PERSON YOU HATED IN THE MATERNITY HOSPITAL LEFT IN A PAIR OF SIZE 10 JEANS
NOW MY TUMMY ISNT FLat ANYMORE BUT ITS A SMALL PRICE TO PAY FOR THE PAIN OF ATROPHY SINCE ON VAGIFEM GONE FROM 10 TO 14 I WAS ON OVESTIN FOR 10YEARS
NOTHING IF ANYTHING I LOST WEIGHT XXXXXXXXXXXX
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Hi Suzi , so I didn't imagine the vagifem belly. Thought I was going nuts there for a while! God, I remember hating those women who got back into their normal clothes after childbirth. I went home in a sack! Well as you say, it's a small price to pay to get rid of the pain and irritation of VA. I am doing okay on this cream from compounding lab. It's hard on those women who can't find alternatives to mainstream medication. I highly recommend that you see Homeopath therapist, Echinacea. I lived in France for 5 years and my GP was trained to use homeopathic meds as well as general medicine. I was given a choice always of what to use, and found the homeopathic meds to be great. My son had a wart on his knee that I couldn't get rid of, but after using the homeopath meds, it went away within a week, never to return. I was amazed at how good it is. I was so disappointed that I couldn't help. I'd love to hear how you get on. I was in a Health Food shop and asked about getting help for VA and the assistant told me about products that many women use ,on the advise from their Homeopaths. Was going to try that next if this cream didn't work, so I know that there are products out there.
Rose.
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Hi Rose,
I will definately look into homeopathy and let you know how I get on. Thank you so much again for trying to help!
I do hope you continue to be ok with your cream.
Echinacea
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Hi Echinacea
I beg to disagree fundamentally - it's not homeopathy you need for VA but oestrogen.
Fine for anyone to try homeopathy because the placebo is very powerful and great if the mind can overcome some things - but it can't cure VA. Only a topical oestrogen will do so. I appreciate others are trying to help but please don't waste your money or your time on this. It's a red herring. It (Vagifem and other topical oestrogens) has been tested on placebo controlled double blind trials - ie recipients don't know what they are getting and placebos do not work on VA.
I am sorry to hear that you are allergic to the fillers, and in your situation I would suggest you try the estring which doesn't have any, although it is a ring - so you maybe allergic to that - but must be worth a try. What did your gynae suggest?
As for increase in belly size - that can occur naturally over time anyway as you get further into meno whatever you are using. My belly is still relatively flat and I use vagifem and full HRT so it is a personal thing.
Hurdity x
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Yes that's true, Hurdity, oestrogen is definitely needed but for some of us, it's hard to get that oestrogen when it's got fillers in it, that we are allergic/sensitive to. It would just be so easy to insert Vagifem and be done with it. It is honestly depressing when you seem to be in the minority and that's why I have been trying to help Echinacea try to find a way around this. Luckily, here in Oz, we can get purer forms of oestrogen from Compounding Labs. I have spoken to women who have tried homeopathy and it's helped them. I imagine you have tried ring, Echinacea but if you haven't, do give anything a go. As for increase in belly size, my doc said that the extra oestrogen can increase your bust size (great if you've had mine that looked like droopy sacks!) and add that extra bit of weight. Doesn't happen to everyone of course but this site has made me realize that I'm not alone in being super sensitive to medication and that is worth knowing!
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Hi Hurdity and Rose,
Thanks for trying to help!
I have tried the estring, and it also caused a massive reaction. Was told it was the silicone in the ring. Why was I not surprised?
I have even tried estradot/evoril patches - three days in and a swollen vulva/vagina and burning pain like never before! Again, was told a chemical in the patch that carries the oestrogen, was causing it.
So you see, think I have just about tried everything, over the last 4 years.
Depressed does not express how bad I feel about this.
I do really appreciate the help. Rose, I know you understand how frustrating it is to know that usually most ladies find something, but your body does not want to play ball. I will look into homeopathy, but can't help feeling that it is oestrogen that I need. I will try anything now though!
Hurdity - my gynae has run out of suggestions, and I keep trying things I have tried before, in the hope things have changed. I think he despairs of me!
I think I have no option but to try and save the money and find a private doctor who will prescribe a compounded cream. Just need a lottery win now.....
Echinace
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Hi Echinacea. yes I do understand how depressing this is and a lot of people don't understand how it feels. I am sensitive to many medications and my doctor keeps trying to make me take them, I do but hey ho I react badly to them. I've got to the stage where I won't be a guinea pig anymore and don't care what my doctors think. It's not them that has to suffer. Deep down we both know that oestrogen is needed but in a purer form. Until you find something, I was just thinking that my daughter, who has terrible eczema, uses natural coconut oil and that helps the unbearable itch she gets. Keep me posted okay?
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Hi Rose,
Thanks again for your reply.
Am seeing the gynae next week, and am going to push for a referral to a vulvar/dermatology clinic that I know of about 30 miles away. Maybe they could prescribe something. I was sent there around 3 years ago, when I had vulvodynia. At that point, there was not much they could do for me, but this is different now.
I can but ask!
Will keep you posted as to the response I get!
All the best,
Echinacea
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Hi Echinacea, I've got vulvodynia as well. The referred pain is bad enough without VA! Tried another nerve pain med for that and guess what?...terrible side effects. I will keep my fingers crossed for you that they come up with something to help you.
Rose x
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Hi Rose,
Arn't we the lucky ones?! Vulvodynia was bad enough, then the VA too!
My vulvodynia is loads better than it used to be, but can flare up when stressed etc. Don't think you are ever really free of it.
I did take nerve meds etc, but like you, had awful side effects. It seems that pharmaceutacols (sp!) are not for us!
How long have you had it? What have you tried?
Would like to hear your experience.
Some days I feel very resigned to all this, almost 'given up' on ever feeling normal again. Other days, so depressed, I cry alot. Other days, not very often, I feel almost used to it all! Sex like non-existent at moment. Ouch.
Regards
Echinace
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Hi Echinacea, at least we can console ourselves that there are at least two of us who don't react well to certain meds! Not being alone in this certainly helps me, so thank you for replying. I have been on Fentanyl patches for chronic back pain (nerve impingement, you name it!) so I only started to notice how bad the Vulvodynia was when the patches weren't lasting as long as they should. The VA certainly has made things worse. Now I have to change patches every 2 instead of 3 days. I also was given Gabapentin and that was a total nightmare (slurred speech, short term memory loss) and have also tried Endep (Ad's) but because I was given two different kinds of antidepressants, I got serotonin syndrome which could have killed me. In short, I am very wary of medications and doctors aren't Gods. I am stressed by University at the moment but also with a husband who neither knows nor cares about my condition. If he were like this, I'd be searching the net to find out all I could do to help him. I hope you have someone in your life who is understanding as it helps, so much. If not, you can moan away to your hearts content and I'll listen. What things have you tried?
ps; I get very depressed too but I know that when you get out of the house and talk to others, it helps the morale. I wish I could use Vagifem :'(
Rose x
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Hi Rose,
Sorry to hear you OH is uncaring..that is awful for you, when you have all this to put up with. You must feel so down at times. Big hug from me x.
My husband is ok, quite supportive, does not really understand these things, but tolerates my moans and groans. Gets irritable with me at times, understandably. So in that, I know I am fortunate.
I have tried all the usual things, as you know, and amytriptylline (AD), gave be bad side effects, Gabapentin - awful side effects, nortriptyllilne (AD) - bad side effects. Had enough then!
I agree about doctors. I do not trust them to know more than me now about all this! We research, in depth, anything that may help, obviously they do not have the time. A lot of the time they will just give you the next thing on the list to try, just to get you out of the surgery. I joke that I am the 'heartsink' patient, I walk in and their heart sinks!
I too, wish I could use vagifem. It seems so simple and effective, and so many others have got on so well with it.
Please keep in touch, and I do wish you well.
Echinacea
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Hi Rose
Hope I find you well.
Could I ask, out of interest, what are the ingredients in the compounded cream you have?
Just in case I do decide to go down the private route?
Thanks
Echinacea
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Hi Echinacea
I have been suffering from the usual cystitis like symptoms which as you know, go with VA. I was doing fine but know I need to up the dosage so I will try to see my Menopause Doc this week. I wasn't given the ingredients but will ask doc for you, okay? Feeling pretty rotten at moment and the Vuladynia seems to be playing up too. Does this ever end? I was doing so well but obviously the bladder isn't getting enough oestrogen. I really wish I could use Vagifem!!!!
Rose
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Hi Rose,
so sorry you are struggling again!
I, too, am having a rough weekend. The vulvodynia, which has been pretty 'quiet' for ages, has suddenly flared up. Oh, the pain! I know that I really need to get some oestrogen in there.......!
Thanks in advance for asking doc. Am seriously researching a private solution at the moment.
We get one life, and the quality of it is being ruined by this.
I do wish you well, hope you have a better day.
Echinacea
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It's a long week-end here and it seems never ending. Echinacea! I think I can take the pain when I'm on my own but everyone is off and I'm fed up! My vulvodynia has flared up with the VA. Let me know how you get on with your research and I'll keep you posted my end. We WILL get through this!
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This sounds such a horrible illness to have. I don't know if the societies mentioned in this link can be of help or whether you have exhausted all of the painkilling and treatment possibilities already http://www.nhs.uk/conditions/vulvodynia/Pages/Introduction.aspx
Taz :hug:
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Taz you're right there - I am another one who has VA and vulvodynia and sometimes the pain of vulvodynia can be akin to childbirth!!! Luckily at the moment Amitriptyline and Gapabentin are helping me, otherwise life would be hell.
Katy x
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I'm glad that you are getting some relief Katy - it sounds such a miserable condition to have.
Taz :bighug:
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Thanks Taz :)
Katy x
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Thanks for the link Taz! I have tried all the things that can help it but have such bad side effects from the drugs that it's worse than the original illness. Know that I'm not the only one, so that helps. I am on pain relief patches for chronic pain and now have to use them every 2 days instead of 3 as the pain can be unbearable. Going mad with the cycle of cystitis that comes with VA too. Just hope I can build resistance to oestrogen by increasing dosage.
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Hi Rose, I hope you don't mind, but I have send you a PM.
Regards
Echinacea
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Hi Echinacea, hope you got my reply :)