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Can anyone recommend a london (or Kent) based menopause clinic or specialist ? Happy (i.e. desperate enough) to pay.

(17 Posts)
Lloydcolestilldoesitforme Mon 26-Jan-15 15:32:07

Hi
Following a previous post I am looking for a london or SE based specialist who can help me following recent surgical menopause. I am happy to pay. I had to have a risk reducing removal of ovaries due to my BRCA 1 gene mutation and some dodgy cysts. I have been plunged into surgically induced menopause (am 42) and was not given any replacement therapy. Everyone very nervous to prescribe anything. Have been back to my GP and not getting anywhere (by their own admission they don't know enough). I have a patch which I suspect is not strong enough but they have referred me to a specialist clinic. The appointment is 2 months away. I don't know if I can wait that long. The menopausal symptoms are apparently very pronounced following surgical removal of the ovaries and every hour is a monumental slog at the moment.
Thanks in advance!

BrighterLight Mon 26-Jan-15 15:56:40

Hello - I am not sure I can help with confidence, only share what I have found out myself. I have just been told I have early menopause - ovarian failure which has made symptoms come on suddenly for me as well. I feel awful, not myself at all, body, mind and spirit.

Today I tried (to no avail) to find a well woman clinic in my area, in the hope of speaking to a nurse to just know I am not alone or mad - there are no clinics in my area for this. Maybe you could try google search for well woman clinic for some support until your appointment.

Or perhaps use this search to see about other services near you.

www.menopausematters.co.uk/clinicfinder.php

I am completely dumbfounded how little support there is - aside from a formal referral which takes ages.

I totally imagine that you must be feeling awful.

BrighterLight Mon 26-Jan-15 16:02:00

I am also considering using this service to speak to someone directly:

www.womens-health-concern.org/help/telephone.html

pinkfrocks Mon 26-Jan-15 16:14:31

Have sent you a PM.

Lloydcolestilldoesitforme Mon 26-Jan-15 22:00:17

Thank you BrighterLight . I will look at those links. I am sorry to hear about your ovarian failure and have full empathy with how you are feeling. I have to keep reminding myself that the normal me is inside me somewhere. It does seem to be the subject that there are very few health professionals who know anything about it. Honestly every interaction I have had suggests that most people just seem to be making it up. I have had conflicting opinions at every appointment. At least my gp confesses to the limits of her understanding, hence the referral to a menopause clinic. Where are you based? See if you GP can refer to you an equivalent clinic. I know they have them in Guys Hospital and Kings if you are based in London.

BrighterLight Tue 27-Jan-15 12:49:07

Good suggestion to remember the normal person is inside somewhere.

There really isn't much information and I am finding myself anxious about all the 'new' symptoms and whether they are permanent or something to investigate. It's confusing to say the least.

I really had no idea that estrogen had a role in so many things - lubricating the joints, skin, mind................

I will ask my GP about other services, I am not in London, down near Brighton. Today I have found a private GP that uses a combination of approaches including natural medicine, which is my preferred route and I am going to give her a call. That way she can hopefully explain and support me learning about why these symptoms have appeared and which ones I can treat and how etc.

By the time we have finished this I think we need a certificate in sudden menopausal expertise smile In the last few days I have used the idea that it is sort of like drug withdrawal - and the body needs to adjust.

Take care and hope you feel more balanced soon -

Lloydcolestilldoesitforme Tue 27-Jan-15 20:35:47

I know, it all feels so bonkers. I just feel that everything creaks. The worse thing is that from the outside no-one would know. When I was hot flashing at work today wanting to cry , my colleague said 'ooh look at that lovely colour in your face''.

I know through my genetics clinic that Brighton seems to have links with guys hospital , at least for clinical genetics So I wonder if under choose and book you could opt. I have an appointment at Kings in 2 months who seem to specialise in women who cant take hrt. Always worth asking I guess.

You take care too ....sending you best wishes

Cafeconleche Fri 06-Mar-15 17:03:55

Have a look at the Marion Gluck Clinic in central London. I started there 18 months ago on bio-identical hormone replacement therapy and it has literally changed my life. (couldn't/wouldn't take HRT due to history of breast cancer in my family). No more weight gain, no more horrendous hot flushes, no more night sweats - it was only after I'd got my mojo back that I realised how bad my life had become. You can get her book on Amazon if you want to check that out first or, even better, Michael Platt's book on bio-identical hormones which was an absolute eye opener. The treatment's expensive initially, but probably no more than I spend on my annual car service. I cannot sing their praises highly enough. Wishing you the best of luck

pinkfrocks Fri 06-Mar-15 17:16:59

cafe- Most HRT these days is bio-identical!

You are confusing 2 things: HRT made in a pharmacy where the actual amount is varied per person, after blood tests, and bio-identical which is pre-packaged and available readily on a prescription- either NHS or from a private consultant.
If you are using bio-identical HRT then you are using HRT.

Some top meno consultants such as Panay do not believe in the approach of Gluck because they believe that it is impossible to judge the amount of hormones anyone needs from blood tests as our hormone levels change daily.
I have been on bio-identical HRT for years; prescribed as Oestrogel. You can alter your own dosage by using different amounts until your symptoms are under control. Same outcome as with Gluck and MUCH cheaper!

Cafeconleche Fri 06-Mar-15 19:07:08

pinkfrocks - not true. My bio-identical replacements are absolutely not the same as HRT - (ie not made from pregnant mare's urine or other such shite) but made/adjusted for me (after blood tests etc) according to my own hormonal needs and levels by the London Specialist Pharmacy from plant-based hormones which closely mimic human hormones. If Panay says it's impossible to judge hormone levels then why do you say that pharmacies which manufacture conventional HRT do so according to hormone levels confused. And if you want to know the difference between conventional HRT and bio-identical prescriptives (and not the pre-packaged ones from the NHS) then read Michael Platt's book on bio-identical hormones. Bio-identical Progesterone is the main component of my daily replacements @ 50 mg, with small amounts of Estradiol and Estriol, along with 2mg of Testosterone. All in lozenge form. I agree that Gluck is hugely expensive but, having also suffered from large and numerous fibroids which led to me hemorrhaging blood for years and for which my GP wanted me to have a hysterectomy, after just 3 months of bio-identical progesterone supplements the fibroids had disappeared completely. I don't wish to seem evangelical about this but I have had two close relatives die from breast cancer exacerbated by conventional HRT. I cannot recommend Michael Platt's book strongly enough. Either way, I'm just saying that this treatment worked for me.

pinkfrocks Fri 06-Mar-15 19:51:00

Sorry but you are mistaken.
Oestrogel- which is a well known oestrogen gel- is made from plants. Look it up- you will see what it is made from.

It is not made from mares' urine 'and other shite' . The only HRT made from mares' urine has the letters 'Prem' at the start often standing for Pre marin ( mares)

I didn't say that conventional manufacturers of HRT do so according to hormone levels. I said that if a woman uses gel she can titrate the dose accordingly daily, weekly or monthly until symptoms are controlled.

I am afraid you are teaching hens to suck eggs with your post. My HRT is every bit as bio identical as yours. What I am prescribed is bio identical- right down to the progesterone - which is marketed as Utrogestan. Look it up.

Oestrogen in any form - as oestrodiol or estriol- has the capacity to perhaps trigger breast cancer in the same way as CEE 0 conjugated equine oestrogens= mares' urine.) If you have been led to believe otherwise that is worrying. What is becoming more contentious is the use of synthetic progestogens and their role in breast cancer. That is why well informed consultants prefer progesterone in natural form.

This paper explains it:

www.ncbi.nlm.nih.gov/pmc/articles/PMC2211383/

There is also info here - about half way down where the sub-heading is Receptor specific progestogens and progesterone
nickpanay.com/Papers%20pdf/HRT%20Paper%20New%20Products%20and%20Regimens%20Climacteric.pdf

This is an extract from the Mail where Nick Panay comments on the type of treatment you are having: (he is past president of the British Menopause Society)

^And it does not make medical sense, explains Dr Nick Panay, consultant gynaecologist at Queen Charlotte's and Chelsea Hospital in London. 'It is not possible to work out the level of hormones to give, based on a blood test,' he says.
'First, because your levels fluctuate-all the time and second because you can't predict what a person needs from the test result.'
He is also concerned about making up creams for individuals. 'These are unregulated products that haven't been tested for safety or effectiveness.'
However, Mr Panay does support the use of licensed forms of bio-identical hormones. And as he points out, you can get these on the NHS.
There are patches or creams containing a standard amount (not tailor-made) of the hormone oestrogen and progesterone. 'That's the most effective route,' explains Dr Panay. 'It gets directly into the blood stream, so you need much less of it.'
Brands include Estrogel, Estraderm and Hormonin. He believes that these approved bio-identical hormones 'should be regarded as part of HRT'.
The problem is, few doctors know about these treatments. 'The crisis of confidence in HRT after the study showing the cancer risk has meant there has been a lack of promotion and education. But these licensed bio-identicals should be one of the options available,' says Panay.
'For a healthy woman coming into menopause, one very good option would be a bio-identical oestrogen in patch form together with a bio-identical progesterone pill.' (A progesterone patch is not thought to be as effective as an oestrogen patch.)
However, he offers this caveat: 'We just don't know yet whether damaging effects will show up in the long term with bio-identicals. Trial results look encouraging at the moment, but we lack the data to say so definitely.'^

Read more: www.dailymail.co.uk/femail/article-1197933/Should-middle-aged-women-taking-natural-HRT.html#ixzz3TdXF3lbT
Follow us: @MailOnline on Twitter | DailyMail on Facebook

pinkfrocks Fri 06-Mar-15 19:56:15

I'm sorry to hear that you have had relatives die from cancer but my consultant told me- when I asked him- that it was completely impossible for any dr to 'blame' HRT for breast cancer- because it could never be proved one way or the other. No one would ever know if those women ( your relatives and others) would have got cancer anyway- how could we? They would have needed an identical twin - one using HRT and the other not- with exactly the same lifestyle, stress factors, diet, medical history etc- at least!

Cafeconleche Fri 06-Mar-15 21:27:03

Fair enough, but I wasn't talking about Oestrogel - I was talking about Premarin (pregnant mare's urine and one of the world's biggest selling drugs) and synthetic progesterone - and I know that estradiol can trigger breast cancer - which is why I take it in minute quantities and all via a lozenge dissolved under my top lip and previously as a cream. Estriol is probably the 'safest' oestrogen when applied transdermally and has, in fact, been used to treat breast cancer since it occupies oestrogen receptor sites and blocks stronger forms of oestrogen. My step-mother died last year from cancer, aggravated by the HRT she was on, which the hospital had failed to cross-check when they started her treatment and the consultant admitted that it had definitely contributed to its spread. I'm not trying to teach anyone to suck eggs, hens or otherwise. It's just that the vast majority of GPs - and many consultants - are not clued up on any of this and when they prescribe HRT they use the conventional pharma form. We're both obviously for bio-identical HRT and against conventional HRT - it's whether or not you believe in the Marion Gluck, Yehudi Gordon, Michael Platt etc 'unregulated' route (and that you shouldn't take progesterone in pill form) or the Nick Panay route in standard (ie not taylor made) amounts. You pays your money (in my case a lot!) and takes your choice.

Cafeconleche Fri 06-Mar-15 21:41:46

www.nhs.uk/Conditions/Hormone-replacement-therapy/Pages/How-it-works.aspx

From the NHS website. No offer of bio-identical progesterone, only the synthetic version which is unrelated to the natural version and has the same side effects as oestrogen. This is what most GPs prescribe

pinkfrocks Sat 07-Mar-15 08:09:33

I think your view is a bit out of touch if I can say so- because Bio-identical HRT ( that is with the same formulation as we produce ourselves)is actually very common.
This list from the website www.menopausematters.co.uk gives all the brands. You will see how few there are made with CEE.

HRT products

Many women use these- if you want to join the MM forum you can ask around- or read without going.
There are lots of women using natural progesterone - Utrogestan- and estriol/ estrodiol.

Re. cancer and oestrogen- what is agreed is that women who use oestrogen-only HRT ( after a hysterectomy) have fewer cases of breast cancer than women who don't use any HRT! The research that I linked to shows that the culprit appears to be synthetic progestogens.

I can't comment on your step mother but all I can do is repeat what my consultant told me ( he is world class and a leading expert)- that no one can ever say HRT 'caused ' cancer. If you think about it logically, how would they know? If the breast cancer was oestrogen-positive then it may have had some impact but my understanding is that it doesn't cause cancer but may promote the growth of small cancer that existed already- and which would have developed anyway. Many women have contributory lifestyle factors such as being overweight, ever exercising, drinking more than 1 unit a day, etc.

What you are using now is probably quite standard in many ways- progesterone has always been used to regulate bleeding - such as via the Mirena coil- and many women use varying amounts of Utrogestan to control bleeding- ranging from 100mgs daily to 200mgs every 10 days in a cycle and use it either vaginally or orally. Again, there are women on the MM forum who describe their regimes. I have experimented with various combinations to get the right balance.

MG has tapped into a need but quite honestly, you could get the same at a much lower cost from other good consultants who will tailor what you need, without it being made for you in a lab.

Kelpie75 Sat 21-Mar-15 08:04:48

Hi lloydcole, hopefully you have seen someone by now but if you are still looking for private, I recently saw an excellent lady at the London Bridge hospital. I will PM the name and likely cost.
The Menopause Society website is also very useful - both for good information and to get the names of the gynaecologists who are closely involved in this field.

sportiedoc Sat 09-May-15 10:44:53

Interesting thread. I sent my mum to Marion Gluck after hearing rave reviews from a few women at my gym. At 63 she is a new woman.
Yes the inital consultation is high - but actually not as high as some other private consultants - around £250/hr with follow up appointments either 75 or 125 depending on the length.
Most patients just need one consult appointment and then 15min follow ups as deemed necessary.
The actual cost of the hormones as compounded at their pharmacy is around £60 per month.. its not huge bucks. The diffierence is - she often adds in other hormones like DHEA, testosterone and pregnenolone which really benefit some women.

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