Group Discussion

Eight group members replies to Helen’s questions regarding HRT in May 2007.

Disclaimer: The NZ Early Menopause Support Group doesn’t advocate any particular pathway for managing the symptoms of early menopause. There are many options, as we all know, and it’s not always easy to find the right one - it’s very much a personal decision. While sharing our information and experiences with each other is an invaluable way of supporting each other, our discussions should not replace dialogue with your doctor.

Hi everyone

Helen has recently made contact with our group and she has a few questions that she’s hoping others can help her out with by telling her about their experience. Specifically she’s interested in finding out:

What type of HRT are you on?

Who do you go and see - doctor/specialist etc.

Can the costs associated with that come under public health?

For myself… I had a real struggle around taking HRT to begin with and certainly resisted it for quite some time. I had a problem with taking daily medication and I got somewhat precious about the whole thing. Eventually I came to the realisation (thanks in part to the wonderful women who were at the Wellington weekend) that it was OK and if it made my symptoms easier and gave me a quality of life that I didn’t have before then that was all good! I’m on Kliogest which is actually a full 28 day cycle. I always go a bit quiet around this point because some women I’ve spoken with have said that I should be having a period each month (in terms of alleviating the risks associated with ???? –I can’t remember what the risk was!!! I know I should!)... But… my GP and the specialist I originally went to didn’t seem to be concerned about this and left the decision to me. I chose no period because I decided there had to be an upside to an early meno.

I did go to a specialist in the beginning but she was hideous so I never went back. I’ve been happy with my GPs advice. He does recommend regular mammograms and bone density scans- my cost (though of course this isn’t such a big concern now that I’m on the HRT). The associated costs (with the GP) are much easier on the pocket too. All that said, it’s been about 5 years since my diagnosis and I haven’t got any extreme symptoms anymore and I’m also not facing specific concerns around fertility. I guess my point is that I don’t really have a need for a specialist personally but I think there’s definitely a place for specialists. I know some women go to an endocrinologist… can anyone shed any light on what that’s about… why do you go? What can they do?

Re the funds. Unfortunately there doesn’t seem to be any financial support available- but I may be wrong. Does anyone else know if a specialist is available under the public health system and if so what does a girl have to do to make this happen?

Thanks everyone

Talk soon

Trudie


Hi everyone,

My decision to take HRT was an easy choice as 6 years ago the doctor told me it’s what I should take. I have read and been told that women over 50 shouldn’t take HRT as the body starts to decrease hormones naturally when you hit normal menopause age. I am on Nuvelle 2mg (estradiol valerate and levonorgestrel) which is also a 28 day cycle. It can be used to control heavy bleeding and can produce regular bleeds even if you have been through menopause. I haven’t had normal bleeds in 6 years but over the last 7 weeks have had the odd spotting, which they think is hormone and stress related. Prescriptions from the doc $15.80 for 3 months.

When I am doing an IVF cycle I take Progynova 6mg (HRT) which is a higher dose designed to help thicken the lining and to help implantation with our donor eggs (not that it’s helping). We are getting ready to start our 6th IVF attempt in the next couple of months. I have just been and had a Hysteroscopy at the local hospital (free) to check my uterus and lining, Haven’t had any results yet but all sounds good.

I see the IVF specialist on a regular basis either in Christchurch or Nelson (free) and 6 years ago when I first saw a specialist in Nelson it cost $75 then $50 for follow ups. I only saw the specialist because my doctor back then didn’t know what to do with me. And the specialist referred us on for IVF.

I have bone density tests and mammograms every 2 years at my cost $120 from memory. And due to an abnormal smear 3 years ago I have a smear every year (was 6 monthly).

Hope everyone is well. 

Sharon


Hi everyone,

Where do you start? It’s such a mind boggling experience.

My journey started with a GP who referred me to a gynaecologist who diagnosed the POF and then referred me to an endocrinologist. The endocrinologist visits cost about $150 (from memory) and the main reason I went was to get a better understanding of what was happening and it felt reassuring to see someone who was a little more specialized in the field (she was also part of Fertility Associates so I figured she would understand my need to have another child as we wanted more than one). I’ve seen her a couple of times but don’t need to go any more as I get my HRT script from my GP. I will only need to go back if there are questions my GP is unable to answer for me.

I started on HRT to get rid of the awful menopause symptoms as I wasn’t coping with things very well. The initial shock of the diagnosis as well as hot flashes, mood swings etc were more than I could handle. It really helped but I must say I was a lot like Trudie and had issues with HRT. I stopped it just after xmas so that I could get my FSH tested as I wanted to see just what was going on with my body. Since then I have come across Femaprin which is a herbal supplement that helps to regulate menstrual cycles. I have been taking it for a month and had a normal bleed. I’m still getting some hot flashes but not quite as bad. It costs $60 for two months supply which is reasonably expensive but if it helps I’m all for it. I will keep everyone posted with any developments. If you want to know more about it check out this website.

Take care everyone.

Rosemary


Hi All,

I was diagnosed at 19 and have been mostly on HRT for that time.

I have now started progynova 2mg and the provera. I will start 6mg progynova soon ready for our first ever FET (Frozen Embryo Transfer) try. Very nervous about that as I have heard stories of success and failure. I guess I want to be cautiously optimistic. My lining has so far been quite good, so hope this is a factor in our favour. Please pass on some good vibes and any other info.

Specialists vary. I have had some not so good doctors and have actually just moved our 21 embies yesterday to another clinic which I have more faith in.

I have now seen a reproductive endocrinologist who actually looked at me as a whole (bone density etc), rather than just infertility. It is all fairly expensive though.

I will write some more when I have some more time. It is good to hear other people’s journeys.

Thanks.

Kate


Thanks,

This information is really helpful - wish I had it before I went to the Dr.

He has prescribed me something called Premia which is continuous as I also decided what’s the point of having a bleed! But the downside to this one is it is $48.50 every three months. I’m not sure how to describe the dosage rate, but the Dr said that because I am rather little that I could try a smaller dosage. But if there is one out there that is far cheaper then I would love to know more about it for next time. I really don’t know anything about them!

I suppose that perhaps I should do a little introduction??

I am 28 and was diagnosed in September 2005 – we went straight into two cycles of DE which both failed. Last year I had a normal dexa scan and then last week I had a bone ultrasound and it showed problems?? Not that the Dr seemed too concerned but decided that I should go on HRT. Oh, and I seem to have missed the horrible symptoms that are associated with POF.

But my other question is – is what are people’s opinions on HRT vs Birth Control Pills? I have considered BCP because of the huge difference in cost but on the other side is the chance of spontaneous ovulation.

Anyway, thanks heaps for listening/reading!

Helen


Hi everyone,

What a lot of knowledge we all have between us. That's what is so great about this group: real advice and understanding that's free!

I was diagnosed 18 months ago and went on HRT pretty much straight away for the health benefits. I was told by my endocrinologist and another specialist I should think of it like the insulin diabetics take. These are hormones that are supposed to be in our bodies. I also try to remember to do my weight-bearing exercise and eat calcium-rich foods as well as I know this will help my bones a lot in the long run.

I tried all kinds of natural remedies before I could accept that there was no magic potion out there that was going to reverse early menopause. I think it's a natural reaction to such a devastating diagnosis, but once I stopped fighting fact (& throwing money down the drain) and accepted the situation life got a whole lot easier. I then had to begin the grieving process, but that's all part of acceptance and moving on. I'm still sad about my infertility but I know there are other options out there for starting a family.

It still concerns me that there are no studies out there to give us some idea of what to expect if we stay on HRT long-term so I'm taking part in international POF studies as I find them on the internet. I figure any research has to be helpful as so little is known about this condition.

I'm taking Nuvelle like Sharon and at $15 per month it's pretty affordable and it eliminates my symptoms. I can get the prescription from my GP or the endocrinologist. I chose the cyclical one so that I'd feel 'normal' and have periods every month. But now I'm starting to think this isn't so fun and the added cost of tampons every month is a bit like adding insult to injury.

Trudie mentioned she's on a continuous HRT. This is fine if you take oestrogen and progesterone every day. This way you get both hormones and no period. Sounds tempting! The danger comes in when you take oestrogen only as this stimulates the growth of the womb lining. Without the protective effects of the progesterone this may increase your chance of developing endometrial cancer. I believe it also increases breast cancer risk. It is such a minefield.

For more info I recommend "The Premature Menopause Book" by Kathryn Petras available from amazon.com:

http://www.amazon.com/exec/obidos/ASIN/0380805413/wwwearlymenop-20

Also, check out this web page from the wonderful women at the Daisy Network in the UK:

http://www.daisynetwork.org.uk/hrt.html

When I came off it in preparation for our first IVF cycle in Jan this year I had daily hot flashes. They weren't anything to really worry about, which I'm grateful for, but it did verify for me that the HRT is doing something beneficial. Like you, Helen, I've had very mild symptoms all along. However, I've had two episodes of heart palpitations lasting about 5-10 minutes each which was a bit scary. I don't know if this is anything to do with the HRT or POF, but I've never had anything like it before and they say these are part of the symptoms. The first episode happened in the supermarket so I took myself off to the doctor round the corner and they did an ECG and everything appeared to be quite normal. The palpitations stopped the minute I walked into the surgery of course! I think that may have been a slight panic attack more than anything as I was organising a big dinner party for my husband's 30th birthday that night. The doctor I saw told me to hold my breath next time it happened and it should calm my heart down. Well, the next episode was at work and I tried holding my breath and it did nothing. Someone gave me some fruit to eat and that seemed to fix it eventually. So maybe these are cases where I've neglected my body a wee bit, but I thought I'd mention it in the hopes that someone else has a coping mechanism for them.

I was on the pill when my periods stopped. They had been getting lighter and lighter for a couple of years but medical people I spoke to just said it was a natural effect of the pill. Ha! My (new) GP took me off the pill and referred me to an endocrinologist after I'd missed two periods with no pregnancy and some odd hormone level test results. The endocrinologist analysed my hormone levels and looked into my overall health (bone density, blood pressure) and tested for any known cause of my POF. She didn't find one and although that was frustrating, it meant I didn't have one of a number of major things wrong with me. A small blessing. I won't have to have another bone density scan for about 5 years.

I've seen my endocrinologist about 4 times in those 18 months ($140 each time - thank goodness for health insurance!). She lets me email her between times as she understands it takes time for all this new information to sink in. I'll now only see her annually to repeat the blood tests to make sure none of those 'major' things has begun to develop and to see how I'm doing. 50+ women need to have annual checkups to keep an eye on the level of HRT they're on as doctors don't like to keep them on it for any longer than necessary. My endocrinologist said that for me that isn't an issue. As long as I'm happy with its effectiveness I'll stay on the same level for the next 20 years.

I personally wouldn't consider using the birth control pill for two reasons:

1. Nuvelle is a lower dose of oestrogen than the BCP and I'd rather not be overdosing on hormones.

2. The spontaneous ovulation possibility that Helen mentioned. If there's a chance I could fall pregnant naturally, I want it!

 We'll probably be attempting our second publicly funded IVF cycle at the end of the year once we've recovered from the first. It was quite an experience with big ups and downs and I'm glad to have this time to really think about what I want out of life.

Thanks everyone for sharing your information - it's been really helpful learning from your experiences.

Cheers,

Nicole.


Good to hear people’s stories. I am still really confused because my first doctor had me on HRT, saying it was the only way to try and protect my body, but then when I changed family doctors (to one that was 'child friendly' as I have been fortunate to have twin boys via donor IVF) he said the latest research suggests that I SHOULDN'T be on HRT long term - and recommended I went off it, so I have. I don't have any symptoms, but try to keep fit and eat lots of dairy etc.

I'm now 37 and was diagnosed when I was 30. I have had 2 bone density scans and will do another one this year. I have slight osteo in my right wrist and also hips so keeping an eye on how that is going.

Thanks again ladies for sharing your 'journey' with me/others.

Anita

Hamilton


Hi everyone,

I've been meaning to write to you all for a number of weeks now and I just keep putting it aside to 'get around to' but decided if I don't just sit down and do it it's just not going to happen!

Firstly, I'd like to WELCOME our newcomers to our growing group of POFers and think it's absolutely wonderful that our very new website has already been working bringing women our way - awesome!

For those new to the scene, my name is Paula Johnson and I live in Upper Hutt, Wellington. I was one of the founding members of NZEM.

Anyway, just a little background on myself.

I went into early meno when I was 29 after a very stressful period in my life where I lost lots of weight and my periods stopped because of it. Diagnosis: early menopause brought on by stress and put on HRT. No support, no information, no nothing. I'm now 42 and have tried most things, have looked at most websites, been to lots of different doctors and now feel like I'm finally out the other side and happy with where I'm at and what I'm on. Of course EM will always be a part of me and has led me on a journey very painful but also very fulfilling. I would not be where I am today if I had not gone through it nor experienced the huge personal growth involved as well.

I came off synthetic HRT and went onto Bioidentical BiEst Cream (Estrogen), Natural Progesterone Capsules, and DHEA Capsules. I was on this for a period of 2yrs and during that time saw my bone density level plummit to border line osteoporosis, my libido turn to zero and depression start to set in. What was happening was that the BiEst Cream was not absorbing into my skin in the right doses plus I found it to be a pain in the bum having to find a fresh place every day to put the stuff, not to mention the cost of all this!

I changed doctors and went onto Estrofem and Ovestin tablets, stayed with the natural Progesterone Capsules and dropped the DHEA. I carried on with this for around 12 months but still was not happy with the outcome. Something had to be better.

I then went and saw Dr Bev Lawton at the Wellington Menopause Clinic. Finally, someone who knew what they were talking about! And she does, she's a specialist in the area and I'm blessed to have her right on my door step!

I'm now on 100mg Utrogestan Capsules (Progesterone), 50mg Climara Patches for estrogen. I cut the Climara patches in 1/2 as I have a breast lump (which is apparently ok but still being checked) and I've found that the full patch makes the lump quite noticeable but the 1/2 dose makes it almost indistinguishable - interesting...

I am happy being on the bioidentical HRT as opposed to the totally synthetic as it just makes sense to me to put something more naturally recognisable by my body into my body than something that is foreign, if you know what I mean. Yes it does cost a lot more (approx $45 per month), but that's the price I pay for what is comfortable for me and my peace of mind.

At the end of the day we are all living 'guinea pigs' and it's up to us as individuals to seek out the best solution for ourselves. Research, try different options and if you have to, keep going to different doctors until you find one you are comfortable with. I just wish I had of gone to Bev long before I did but I had to go on my other journey first as that's where I was mentally and emotionally and my belief system at the time wouldn't let me try anything else.

I'm now happier than I've been in a very long time, I actually feel like sex on the odd occasion instead of not ever, we recently even had intercourse for the first time in YEARS and it didn't hurt so much so I'm confident the patch is the way to go for me and that the estrogen level is slowly coming right and building things up for me in that department. My memory is better, although still not like it used to be, but I don't get stuck in the middle of a sentence like I used to as often as I used to. I still get tired but just learn to live with it and try and take time out before I burn out. Plus I'm now only popping 1 pill instead of 4!!

I'm about to go for another bone density scan this month so will be very interested to see what the outcome of that is - I'll keep you posted :-)

My advice - listen to your body, do your research, do what feels right for YOU. Word of caution re the Progesterone Cream - you never get a reliable dose with creams and of course don't know if it's being absorbed properly into your system. Personally, I think the capsules are far superior as you are getting a measured dose, plus they are much more convenient - but that's just my opinion :-)

I'm happy to talk with any of you at any time so please feel free to phone me for a chat if you want. It's best to call weekends - 04 526 4996

Warm Regards to you all.

Paula

P.S. The only children (apart from my partner) I have is my Birman cat called Bailey who I love to bits :-)


Hi Paula (and everyone!)

I always think it’s a brave move putting yourself out there to other women in the group- but I know that others gain so much from it. It’s interesting and really wonderful to hear you use the word “fulfilling” to describe part of your journey through EM. I guess it gives a light at the other end of the tunnel to those who are newly diagnosed and struggling to come to terms with what that means for them and their families. All of our stories are so very different and impact in so many ways, not only on our own lives but the lives of those we love - but your email sounds hopeful. Thank you.

I‘m interested in the recommendations of Bev Lawton (for those of you who don’t know her, she’s the president of the Australasian Menopause Society – if you’re in the Wgtn region she could definitely be worth checking out- what sort of charges are involved Paula?). I was particularly interested because I assumed she would promote synthetic hormone therapy but you say you’re on a bio-identical… have you actually found a specialist who will CONSULT with you about ALL of the options and work out a treatment option that suits?! I’d started to believe there was no such thing. If this is the case, she is definitely worth visiting as it really is such a struggle to understand all of the options and what they mean for you and your long term health – and of course as Paula mentions, our belief systems sometimes get in the way of us trying some options (I know this was the case for me - it took me a good two years before I would even consider synthetic HRT) but at least if you have a specialist who will consider all of the options, then you’re never writing off possibilities and closing doors. 

Thanks for keeping in touch, Paula.

Trudie


Hi again,

I think my first appointment with Bev was around $160 or $180 but was for approx 1.5hrs and she did a very good checkup and we had a good chat about things, history, etc.

Subsequent appointments are around 1/2hr and cost $80. I've been back to her twice since my first visit and due to go again in July. I can probably get away with yearly visits now as I'm happy with what I'm on and my GP can monitor blood pressure or other things if need be.

It's a bit of an investment but I feel it's worth every penny to talk to someone in the know, and being a woman she understands us!! Forget the men doctors, they haven't a clue and quite frankly I think they get the heebie geebies and throw their hands up in despair as to what to do with us - bit like men in general I think - hehe :-)

I must say I was expecting Bev to go down the synthetic hormone road, and my GP thought she would too. We were both relieved and pleasantly surprised that she didn't. Just goes to show that some are open minded after all. Plus Bev has an awful lot of contacts and keeps up to speed with recent research etc. etc. Menopause is her passion and what she specialises in so she has our best interests at heart.

If you want to contact Bev directly her details are:

Dr Bev Lawton
Wellington Menopause Clinic
Ph: (04) 475 7670
www.wellingtonmenopauseclinic.co.nz

Good luck and I'll keep you posted on my upcoming Bone Density scan, Infrared Imaging for my breast and biopsy - it's all go!!

Cheers,

Paula


My story is of some interest I think because I am one of the older members of this small group of women.

At the age of 32 I was diagnosed with premature menopause as it was called then. I am now 63 years of age. For all of that time, 31 years, I have been on HRT. I don’t think a lot was known then about premature menopause and HRT was very new on the market. I believe my doctor was quite forward thinking to have put me on it.

I have had fantastic quality of life during all those years on HRT which I firmly believe would not have been the case without it. There have only been a couple of not so good periods, one being when at the age of 55 I decided to stop having periods, and had to go off HRT for a month. The effect was unbelievable. Back came all the symptoms of menopause and unbelievable mood swings, which I am not prone to at all. However, once back on a different HRT to stop me having periods, all symptoms disappeared.

The second problem occurred about two years ago when I had some spotting and an examination showed a thickening of the endometrium. I had a “d and c” and a Mirena implant, a slow release oestrogen, contraceptive. In my case of course, at the age of 61 it was not for contraceptive purposes but for HRT. I am now also on a lower dosage of Estrofem and the plan is to slowly reduce it and eventually stop altogether. At what age that might be I don’t know.

Anne Wilkinson

Health__and__Wellbeing