Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Peacegirl on June 22, 2017, 02:03:20 PM
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This is my second visit to my local menopause clinic, the first visit being 3 months ago Where I felt she didn't accept some of my symptoms were due to low oestrogen when I'm sure (knowing my own body) they are. It's taken years and lots of tests to find this out -it's not something I just came up with. Any time I mentioned a related symptom like hair loss, ulcers, insomnia, aching bones - it felt like she said 'it could be your diet though anything can cause those things you need to speak to your GP'. It seems the only symptom accepted is hot flushes. I do have strong evidence that these are related to low oestrogen as they improve when I take enough oestrogen plus I eat a really healthy diet, plus Ive had endless batteries of tests as my GP bless him is always offering them!
On this second visit I was greeted by a different doctor who said she was taking the appointment and my usual specialist was sitting in and was that ok. I try to support training but it actually wasn't ok today as I feel my situation has got a bit complicated but I didn't feel able to say so -I know that's poor and I have been much more assertive lately, but I had got all ready to fess up to the specialist that I haven't been using the utrogestan as prescribed and wasn't expecting this.
The new doctor started taking my history again and asking when my last period was which I don't know (because is years) and didn't know on the last visit. She then asked me what I was taking - (did she read my notes!!) Anyway I kind of interrupted and cut to the chase because I didn't want my whole appointment being taken up with history/note-taking as it was last time, and said 'my life has been so much better on this regime, better than for years but 6 weeks in hair loss started up again and I don't know if i'm willing to go bald and is there another progesterone I can try?' I then has to sit through a lecture which I've heard 4 times already on male pattern hair loss. So then the observing specialist says 'I'd be very surprised if it's the utrogestan as that's rare'. The trainee then asks me again about dosage and I explain I've been taking it every other day and why and she says 'that's not ok'. I say 'but what about if I have scans - i'll pay for them myself' and she says 'they don't work because they don't detect endometriosis'. She asks me 'are hot flushes the only symptoms you had?' and I'm thinking again 'did you read my notes???' So I list them again and the observer specialist intervenes again with 'there are many things which can cause mouth ulcers you need to speak to your G.P.' (I've spoken to him many times and had several blood tests)
Sorry this is so long and ranty and angry (i'm so frustrated) the main problems are;
Not feeling treated like and adult and not being listed too.
Feeling a lack of continuity, like they hadn't read my notes.
Going over and over the same ground but not wanting to hear about my actual experience.
Treating menopause as if it's unconnected to anything else in the body - i.e. 'you need to see your GP about that'.
Having to have a 3-way conversation because the trainee was very inexperienced and kept having to ask which normally I wouldn't mind.
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Shortie, thank you for replying and giving a positive suggestion. I think I will go see him. Once I've seen him do I have to pay private prescription charges or can I take the script to my gp?
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Peacegirl, just be aware before you shell out big money on Prof. Studd that he can be rather abrupt to deal with, so if you're looking for an attentive, sympathetic ear he probably isn't the best choice although of course he's been marvellous for some women here.
I wish you the very best of luck. xxxxx
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Peacegirl, just be aware before you shell out big money on Prof. Studd that he can be rather abrupt to deal with, so if you're looking for an attentive, sympathetic ear he probably isn't the best choice although of course he's been marvellous for some women here.
I wish you the very best of luck. xxxxx
Hi, thanks that's good to know. I can indeed be a bit sensitive round this issue. :-\
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Of course you are sensitive, you have been to a 'menopause' clinic where 'they' appear to believe that if a woman has flushes then she is menopausal: without taking into account the many other symptoms which lowering oestrogen may cause. I have never had hot flushes but do have other symptoms which are intermittent.
Give Professor Studd's Secretary a ring and ask what the waiting list is likely to be and take a list of your main symptoms to the appt.. The Secretary should be able to tell you if able to get any suggestions via the NHS.
Let us know how you get on! Where is your GP in all this ? (sorry if I've missed something ::))
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Of course you are sensitive, you have been to a 'menopause' clinic where 'they' appear to believe that if a woman has flushes then she is menopausal: without taking into account the many other symptoms which lowering oestrogen may cause. I have never had hot flushes but do have other symptoms which are intermittent.
Give Professor Studd's Secretary a ring and ask what the waiting list is likely to be and take a list of your main symptoms to the appt.. The Secretary should be able to tell you if able to get any suggestions via the NHS.
Let us know how you get on! Where is your GP in all this ? (sorry if I've missed something ::))
Thank you, my gp is lovely but he suggested a specialist referral after I had hair loss from evorel conti and then severe insomnia from Premarin and though femoston was great in many ways, I got low estrogen side effects. Think he ran out of ideas and of course I'm still learning about it all.
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Aren't we all learning :( ...........
The body drops oestrogen levels 'naturally' :-\ ......... fortunately I had few of the 'real' menopause symptoms other than periods gradually disappearing and flushing after evening bath for several months but that could have been my medication. I also itch: insteps, across my shoulders/back ....... not continually but very annoying!
Insteps start itching as I take off socks and step into the bath. Add to that VA ::) ..........
Why don't people at a Clinic, supposedly in the know about menopause, actually know :-\ - what are their Qualifications and how much do they get paid to tell ladies that without flushes they can't be in menopause!
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Peacegirl I don't think Meno doctors are specialized enough in the menopause. I think ladies on these sorts of sites know more. I saw Prof Studd & yes he is very abrupt & because his regime of oestrogel & utrogestan didn't work for me he wasn't really interested anymore. I saw DR Panay as well & found him much better to get on with but I must emphasize that these are only my personal views & others probably think differently. Menopause Doctors aren't gods & just because they haven't heard of a side effect from HRT it doesn't mean it doesn't exist for you. I hope things improve for you. Xx
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If only they would listen though :-\ - that way we all learn.
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Having been to the menopause seminar last night , I REALLY feel Dr Louise Newson would be great to see , going through meno herself and on HRT....very kind and compassionate a breath of fresh air.
I also have to go private , we shouldn't however 😏.
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She's my private consultant, MJ. xxxxx
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I see a gynaecologist privately and I am able to get my prescriptions via my surgery. She always sends my GP a follow up letter expressing her recommendations and I go for a follow up appointment with the GP to ensure my repeat prescription list is kept up to date. If you live in the south of England, I can recommend my gynaecologist who is lovely, kind and sees the whole picture.
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I know this is probably a bit contentious but can I ask a question.
I have read so many times on the forum what the private doctors prescribe. And it's exactly the same time after time.
Gel or a patch.....Utrogestan for so many days a month...,some that have trouble with progesterone on a longer cycle and a dab of testosterone.
If I know this then so does everyone else that reads the forum.
Why then spend hundreds of pounds for what will just be the same recipe.
I may be thick here but if it was a tailored prescription then I could understand. Made to measure stuff after extensive blood tests. Compounded maybe.
Can I say I am not against anyone going privately as I have done it myself over the years but not for meno stuff.
This is a genuine question as I really don't understand.
Mrs Brown
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For me Mrs. B it was just to get to try Testosterone as I couldn't get it via my NHS consultant even though I'm indicated for it with no ovaries.
As it turns out, I've fell at the 'estrogen hurdle' again as patches won't stick no matter what and estrogel is too up and down despite split dosing. So I'm pretty much back to square one again. :(
Its true what you say - there is nothing 'magical' about what private Consultant's prescribe. The only exceptions I can see are private Consultant's who will prescribe long cycle progesterone for those who are Prog. intolerant or those who would like to try testosterone and can't get it via the NHS. Everyone else can pretty much get what they need from their GP and save their money. It's just trial and error to find an HRT which offers benefits and with side effects you can tolerate (if you're VERY lucky you might experience none). xxxxx
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So difficult Tempest.
It's just that I read over and over the self same thing. It's very sad really.
Mrs Brown
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Also shortie - it is Professor Study ...... would you want to be called by your surname? >:( He has worked hard to get where he is !
It is Trial and Error to find a Consultant who will prescribe what might help rather than prescribe what they think will help . Also, paying means we get a longer session so don't feel rushed :-\
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I'm sure he really wouldn't care CLKD if he is getting a recommendation.
My point is that Prof Studd....and the rest prescribe exactly the same. I first started reading this forum about five years ago and I have read the same thing being prescribed for almost every single woman that have been to see these eminent consultants.
It begs the question why.
Ok you can get testosterone but everything else can be had from even a less than clued up GP.
If they were coming up with something new then.... :-\
Mrs Brown
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Trouble is, a lot of NHS GPs don't listen to women who are aware of what they may require so they get fobbed off ......... so the women don't get referred to a Consultant who may offer or not, a solution. Some GPs still believe that women need to be flushing regularly 2 B menopausal and don't discuss or believe the other symptoms that lack of oestrogen throws up.
Privately one does get the opportunity to discuss pros and cons as well as being able to go back to discuss results ......... sometimes it is easier for a Private Consultant to press for treatment where a GP may not be willing to prescribe.
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Very true CLKD.
Sad situation though as all ladies should be able to get good treatment without having to pay.
A good GP is worth their weight in gold.
Mrs Brown
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So true, Mrs. B! There is also a case for counselling women about their expectations of HRT. I read some guidelines from one NHS trust (I can't remember which, but they were very good) about advising women of what CAN be achieved with HRT and how it's not be be expected to be a 'cure all' for everything. I think this is a very valid point.
For instance, in a thread I posted on today I spoke about how Professor Studd on his own website says that anxiety is very difficult to treat with HRT and that he advises women to seek counselling in addition if this is part of their symptoms. I know this will surprise some, but it's there in his own writings. He also stated that depression post menopause is NOT helped by estrogen replacement therapy unless it is due in some way to an improvement in vasomotor symptoms and therefore sleep quality and quality of life (this is repeated in numerous other sources elsewhere). The benefit to mood is seen predominantly in women who are in the menopause transition.
I'm just picking these two examples, but there are others of course.
I think a good question to ask first of all when you see any Consultant is 'what improvements to my symptoms can I expect from hrt' and take a list. That way, the Consultant can advise you if the things that are bothering you CAN be helped by HRT, and how much of an improvement may be possible with the right type/dose.
I've learned all this the hard way myself over the last 2 years - there is no 'magic bullet' that will be able to fix everything, unfortunately . xxxxx
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Oh, and I know Professor Studd's prescription off by heart.....it's the same for everyone! ;) :)xxxxx
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I think my post about HRT and expectations was valid to Peacegirl's post. It's a good idea to ask outright 'will HRT address these symptoms which are bothering me'. For instance, hair loss can be tricky. It MAY be related to hormone imbalance, it may not. It can certainly also be CAUSED by some types of HRT too. Joint pain can be improved, but some may be due to 'wear and tear' due to osteoarthritis which would NOT be helped by HRT.
It's tricky for Consultant's to give definitive answers sometimes - it IS very much 'suck it and see'. xxxxx
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Menopausal symptoms vary from person to person. When you are able to see someone privately, you are given more time and your issues looked more holistically. ( I don't know about Prof Studd). You don't have to wait months and month for an appointment and if you don't get the service you deserve you can go elsewhere. I am able to contact my gynaecologist if I have problems or further questions. I have also received dietary advice, which I have found invaluable. I do not have a lot of money, but I consider help I have received is invaluable and has given me back quality of life. I did not get this on the NHS. It was being suggested I had CFS and that CBT (in the far distant future by the sounds of things now) was all that was on offer. I was not convinced. HRT can never be the whole answer, I agree. How can it be when we don't know exactly what is lacking. It is trial and error. I still have bad days when even showering seems like a mountain to climb, but other days I can walk for miles.
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My NHS menopause consultant does support truly 'extreme cases'.......I chose to go private purely as I wanted to try Testosterone simultaneously with my ERT to see if this might help rather than wait as the guidelines suggest. The NHS does generally have to operate within some guidelines but I agree a bit of flexibility is good. But cost and demand on limited services does prohibit a truly flexible approach also.
To illustrate the 'extreme cases'seen at the clinic I attended, we are talking about young ladies as young as 16 who have premature ovarian failure and are in menopause. Ladies who are BRCA positive and having to undergo oopherectomy, often many years before the age of natural menopause. Women with estrogen receptive cancers who cannot take HRT and have severe symptoms which are difficult to manage.
Whilst I understand that a woman's natural menopause can be extremely difficult, I think it's important to realise that the really 'difficult cases' should receive good support and that strapped resources can't cover everyone to the degree of attention and follow up that many women in natural menopause would like.
Where things ARE falling down is that GP's are not up to speed with the prescribing of HRT. This is a travesty. No woman unless she has a complex case history should need to be referred to a menopause consultant if all GP's were competent and confident in prescribing.
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I see a gynaecologist privately and I am able to get my prescriptions via my surgery. She always sends my GP a follow up letter expressing her recommendations and I go for a follow up appointment with the GP to ensure my repeat prescription list is kept up to date. If you live in the south of England, I can recommend my gynaecologist who is lovely, kind and sees the whole picture.
Hi ju ju, thanks that's really helpful, could you possibly pm her name?
Thanks 😀
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Very interesting discussion. I'm agree with most if what's been said and can see there are a lot of shared experiences but also a lot of very specific o es too. I was reluctant to go the specialist route because my gp is so lovely (having had at least 3 very negative experiences before that) but at that stage, he'd run out of knowledge of what to prescribe and, as I said I'm not quite confident to know what to ask for myself yet. I agree too that the so-called soeciakusts aren't gods either- Tory seem yo vary and I had one awful exoerience with a gynae who to,d me my receptors were worn out, something which clearly is t true. (Yet).
I hear what's been said about super-experts, we can have too high expectations and I'm not a wealthy person. I might yet investigate other causes of hair loss again but I have had regular checks for this and I may consider a wig. If I continue with the utrogestan though I'll take it my way- my body, my life, my choice but if anyone knows and good wig people (south area) thst would be great. 🙄 Thanks again all xx
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Hi Peacegirl,
I'm really sorry but not on here all time so don't know your full history. Have you had/got endometriosis?
I do have it and now cannot take oestrogel without continuous Utrogeston or no HRT for me! If you do have it the unopposed oestrogen feeds the tiny spots of endo very quickly!
Hope you find a regime that suits you.
X
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As we all know we are all so different & so what works for one won't work for another be that NHS or Private. In my opinion hair loss & hormones are definitely related. I used to have lovely thick hair & now it is much thinner. Also I think stress because of the menopause has made my hair thinner as well. Have you researched into natural therapies which might help with this?
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Hi Peacegirl,
I'm really sorry but not on here all time so don't know your full history. Have you had/got endometriosis?
I do have it and now cannot take oestrogel without continuous Utrogeston or no HRT for me! If you do have it the unopposed oestrogen feeds the tiny spots of endo very quickly!
Hope you find a regime that suits you.
X
Thanks for your post. I haven't got endometriosis no but due to nasty side-effects I'm taking utrogestan in a way thst is deemed safe in some countries but not by some here therefore it could be perceived thst im putting myself so risk so some advocate regular womb measurements as a way of monitoring is useful (although my specialist doesn't)
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Hi Peacegirl - just read this page and replying to your request for wig makers in South area.
Not sure where you are but a friend who had recent chemo treatment was recommended two - one in Blackwater (GU17 0DS) and the other in Sandhurst (GU47 8EE) both easily accessed from J4 of M3. Or from M4 but no idea of junction.
My other thought to your comment is have you considered asking who your GP would recommend you seeing?
Hope you feel better soon :foryou:
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As we all know we are all so different & so what works for one won't work for another be that NHS or Private. In my opinion hair loss & hormones are definitely related. I used to have lovely thick hair & now it is much thinner. Also I think stress because of the menopause has made my hair thinner as well. Have you researched into natural therapies which might help with this?
Hi, and thanks, it's not gradual thinning but sudden and noticeable hair loss as per male pattern baldness. It happened with the norethisterone as apparently this progesterone is known for in susceptible people and then it was ok and the it happened again exactly the same way (I.e. 5 weeks into taking it and escalating) since starting the utrogestan. So I heavily suspect it's this but I guess it's possible the utrogestan is perhaps causing another effect like iron-deficiency but this wasn't the case previously as I had loads of blood tests. Im going to try provera and see what happens then!
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Hi Peacegirl - just read this page and replying to your request for wig makers in South area.
Not sure where you are but a friend who had recent chemo treatment was recommended two - one in Blackwater (GU17 0DS) and the other in Sandhurst (GU47 8EE) both easily accessed from J4 of M3. Or from M4 but no idea of junction.
My other thought to your comment is have you considered asking who your GP would recommend you seeing?
Hope you feel better soon :foryou:
Thank you!
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You certainly can Mrs B! - I eventually and reluctantly went privately as I was getting nowhere with my GP practice- little knowledge of HRT and little tolerance of the severity of my symptoms.I begged them to change my prescription to a different prep or method of application ( no, it's the same hormones etc etc) . All they did was increase and decrease my dosage. Feeling increasingly unwell , all they then did was give me another regime and then another, all with norethisterone as the progesterone. They then changed me from sequential to cyclical therapy despite me begging for a kinder progesterone and possibly going back to sequential. I had of course discovered this site and made the connection with the progesterone element.
So, getting nowhere, I saw the consultant privately- to be fair, he went through all the HRT options before prescribing oestrogel and utrogestan- no testesterone at this point. I thought I had won a watch as so many people had raved about it on this site. It hasn't worked out for me- it's been better than the previous regimes but it's not been great. Went back and can go longer cycle with medical supervision which I've decided not to do ( although I may have to if going without doesn't work)
Maybe they prescribe this regime as the bio identical progesterone is kinder ( huh? ) and that the oestrogen can be tweaked up and down.
I would doubt very much that most GPs would have the knowledge or experience to deal with this and it's only the very confident amongst them that would start with the more expensive options! They seem to go through a list of what they will prescribe initially - one size doesn't fit all, so that's why sadly a lot of us are forced into the private sector - maybe the oestrogel/ utrogestan combo is the best we've got at present but it's not for everyone. I'm rapidly reaching the conclusion that HRT doesn't suit everyone either. It sucks! X
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I think that I mentioned a specialist hairdresser: did a search on here : found it!
maybe have a look-see at the Stylist, Trevor Soribe ……. he supports those going through treatment
"His other passion is My New Hair - the wig personalisation charity for cancer patients he founded in 2006. Trevor came up with the idea following his sister-in-law's struggle with hair loss after cancer treatment, and is dedicated to training other hairdressers on how to customise wigs in order to make this service widely available to everyone. "
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I think that I mentioned a specialist hairdresser: did a search on here : found it!
maybe have a look-see at the Stylist, Trevor Soribe ……. he supports those going through treatment
"His other passion is My New Hair - the wig personalisation charity for cancer patients he founded in 2006. Trevor came up with the idea following his sister-in-law's struggle with hair loss after cancer treatment, and is dedicated to training other hairdressers on how to customise wigs in order to make this service widely available to everyone. "
Hi yes trans out he doesn't make the wigs himself but shows women how to use them well and trains professionals around this too. But he endorses a wig site which Ive looked at and it's fab!! And most importantly, they accept returns (many don't) So thanks for your really helpful posts! :-*