I need to bite the bullet and go private - gutted but where do I start?

[Summerhillsquare]

Diagnosed as peri 18 months ago, took 6 months to get any treatment. Been on HRT a year and have cycled through pills, patches/utrogestan, Oestrogel/Utrogestan and back to the patches recently.

Basically I still have most of the orginal symptoms along with the side effects. In particular I have been driven spare by poor sleep and lack of confidence, jittery anxiety and crashing depression.

I got a big promotion a few months ago in spite of this and am desperate to be succesful, but also to do something else with my life other than grinding through work.

I can't recall a single question the succession of GP's, nurses and HCAs have been able to answer. I have been told many things that are contrary to the little published evidence that there is, too many to go into here. Only once 'seen' the same person twice. Have asked to be referred to the specialists but tumbleweed. They are clueless, and worse, couldn't care less. Destroyed my faith in, and to some extent support of, the NHS. Its institutionally sexist.

To me, knowledge is power. I am desperate to understand, even if I can't be treated. I just need to KNOW whether I am one of the women who get no benefit from HRT. To make an informed decision about whether to give up.

AIBU to go private? Where do I go? I joined the waiting list for Louise Newsome's clinic, popular on here, but everyone seems to get the same presciption. I've had all the presciptions now AFAIK. I need expert input. There seem to be clinics in London. Can anyone recomend? I have a lifelong suspicion of private medicine and worry that I will also be fobbed off, but this time after handing over vast amounts of cash!

Have you tried testosterone op?

Also Nick Panay heads up a team at the ChelWest hospital. Both NHS and private. Be careful you don't get palmed off onto the nurse specialist though!

I wish! GP had not heard of such a thing.

Thanks so much for suggestions.

I can't seem to access PMs from the app, will try via desktop later.

GP's can't initiate testosterone, but you should be able to ask for a referral to gynaecology for it - there should be a local menopause clinic.

Have you seen a middle aged female GP? They're your best bet for finding a GP with some knowledge of menopause.

Yes, have asked for referral, no response, I think I will have to write to the practice manager again.

Apart from the GP who diagnosed, they've all been middle aged women.

I would second @DrDinosaur there! My middle aged female GP was more than happy to refer me to the C&W menopause clinic. She said it was an expert area and she prefers them to see women if possible, rather than prescribe herself unless it's very straightforward. I struck gold as I saw Dr Panay himself for the first appointment, and am so thankful for that as I was in a bad place at the time. I would definitely recommend seeing a specialist in whatever way you can.

I go to the Newson clinic, as do a few people I know and we definitely don't all have the same prescription! [Unless you mean oestrogen/progesterone combo, in which case that would be a typical place to start!]

I have 'tapered' HRT as still having natural periods, but that will change to a different prescription as they stop. In my experience the Newson clinic is good at tailoring to individual need.

Following as I’m at the start of this journey, prescribed the mini pill for heavy periods 2 months ago it’s done nothing I’m bleeding on average every second week.

Im so miserable anxiety and depression have no interest in anything just don’t care anymore or everything and everyone is annoying me!

can’t see a GP for love nor money here just now, they have this stupid on the day triage system where someone will “phone you back in a 3 hour window - fantastic if you work” last time I saw a nurse who basically said to me what do you want us to do?

1)What dosage are you on now OP?
2) politely demand referral to HRT clinic. Push the PM about this.
3)In the meantime educate yourself on what you are allowed and then insist that GP prescribes that. Why are you not being more demonstrative?

Ask PM which of their GP's deal specifically with Menopause.

Have you tried Oestrogel?
Are you on Utrogestan?

I have tried most things. Gel, patches, pills, vaginal pessaries!
When I finally saw HRT Consultant she couldn't understand why I was on such a low dose of estrogen. She immediately doubled my patch from 50 to 100 then to 150. I have progesterone aswell. And Oestrogel. (I'm not suggesting you will need any of this, but you could be on too low a dose). You won't know till you firmly demand answers from GP.

The menopause clinic at the Chelsea and Westminster is one of the best NHS in the UK BUT @Runaround50 I am not sure of availability at the moment. There is a referral guide on their website and last time I looked for another poster, it seems that referrals were paused- maybe due to Covid at the time.

Nick Panay who runs it is great of course, but I have heard that his private waiting list can be 6 months. Dr Louise Newson herself is on record ( youtube or podcast) about trying to get an appt with him for herself years ago and struggled!

It's very hit and miss with private consultants, I could name a handful who IMO are very good, based mainly in London, but like all things in life, it's horses for courses and who you have a rapport with.

What I do know, from my own consultant, is that HRT is only part of the 'managing meno' regime - you also need to make lifestyle changes if necessary, especially diet and really go for wholefood, unprocessed food, cutting our refined foods, getting your weight down if necessary and taking exercise daily.

Some women find meditation, mindfulness and CBT helps with the emotional side @Summerhillsquare

Agree with @JinglingHellsBells

Diet and lifestyle are also crucial at this time of life. For example, I can't cope with any major stress or upheavals. If things break in the house, I am not as tolerant in dealing with it. Same goes for people in general. I'm not the same person I was 5 years ago.

Menopause is massive for many women. Hrt is just one tool in the box I'm afraid.

@JinglingHellsBells Agree also re the rapport thing. Nick Panay is excellent, but lower down the line ( nurse specialist) and you are repeating yourself many a time and dealing with lost or incorrect notes, all whilst on the telephone.

Hi
Did they ever check your levels of oestrogen etc. I don't absorb transdermal way so was taking all sorts of HRT for 5 years but that NHS not private and I'm with meno clinic.

Not offered, I didn't know to ask for it.

100mcg patch.

Its takes 3-4 days on average to get a telephone appointment, with a different person each time who hasn't read the notes, and can't answer any of my questions, and whose role is to decline my requests it appears. I use up what energy navigating this process. Believe me I've been assertive. I used to be a confident woman.

HRT does not always work. I had a lot of symptoms and chose to go on HRT because of chronic muscle and joint pain. HRT solved the mild hot flushes ( which never bothered me) but had no effect on any other symptom.
I had to come off HRT when I was diagnosed with hormone positive breast cancer. I was post menopausal at this point and went straight on to anastrozole so now have very little estrogen. I have as expecting all sorts of problems but I feel better than I have done for a long time. I have radiotherapy fatigue and still recovering from treatment but overall I am coping a lot better with life.
Post menopause is as it says, you have made it through a hormone storm and everything calms down.
After a little research I found that the muscle pains were the result of low magnesium which in turn was due to another drug causing poor absorption.
Anastrazole isn’t without its side effects but taking it reduces the risk of the breast cancer returning and I’m quite enjoying the lack of hormones.
Some of the side effects Davina et al don’t tell you about include HRT stimulating fibroid growth ( most women have them). After 4 yrs of low dose estrogen I had huge fibroids causing a whole set of problems by themselves. Fortunately they have shrunk back since stopping HRT.

Although the private clinics can rapidly address your needs, sometimes it can take months on specific meds to get a result.
It’s not an instant fix for everyone.

Have you got GP in your practice specialising in womens health. They tend to be better with meno. You need blood test for your levels. I was on 6 pumps of oestrogen and my levels were low. That should check because if you don't absorb maybe you will need implant. Implants are only available I meno clinics and private. Also testosterone is not always prescribe by GP as well, is not licenced and they will tell you is not available. Some do some don't. I went through a lot with GP I was diagnosed at 35yrs so I demanded referral to meno clinic. Meno clinic runs all blood tests but recently they tend to say we go with symptoms. Also I think there are different norms about levels within NHS different in private clinics. If you can afford I would go private and do all blood work. FSH, oestrogen, progesterone, testosterone, thyroid function, you should also have dexa done. Supplementing is important I'm taking magnesium citrate now for 8 years everyday.

When I was changing HRT I was always giving minimum 4months to make sure is working properly I had appointments every 6 months.

I've spoken to both GPs in the practice who claim women's health expertise. The most recent one asked about bleeding and when I said it was irregular on HRT she said 'oh well then your periods have likely stopped and you might not need progesterone'. Thank god it was on the phone, my face must've been a picture.

The Newson Clinic have take on a load of new staff, it's cut the waiting list right down. Try them if you get no joy from your GP.

Following as I’m looking at getting a new private menopause specialist. Currently been with Newson a year but I’m not happy at their price changes and service changes. If I can’t ask a question between appointments without being charged £230 for my doctor or £50 for a nurse ( which I don’t want ) then I think that is super expensive. I feel better but not where I need to be. I’m hypothyroid too, so that is what is complicating my situation. Do you have any other hormone issues?

I wouldn't go to Newson as well I live 10miles away and I do remember when she started. Is lots of good consultants in private hospitals.

There are plenty of other private drs out there if the Newson clinic is busy.
They all work differently.

Mine doesn't charge for quick calls ( 5-10 mins) between appts. I've rarely needed this, and obviously it's not something to do all the time.

It's also worth thinking about what you need. If you 'just' want a prescription for HRT and are struggling with a GP who won't oblige, fine, go to Newson ( or try another GP, even a private GP, which will be cheaper than the Newson clinic.)

If you think you might need gynae investigations like scans or a hysteroscopy, or anything other than a prescription, choose a gynaecologist who can do HRT/ menopause and everything else.

The issue (limitations) with a clinic like Newson is it's really all about HRT (and lifestyle changes) but if you need anything else that can't be done remotely, you'll be looking for another consultant as well.

I suffered terribly from pms for years and then with peri I had all the symptoms you list plus aching limbs and teeth, hair loss , anger,anxiety and depression, nearly cost me my marriage.
I went private as I had other issues ( fibroids, undiagnosed endometriosis, adenoydosis etc) so chose to have a full hysterectomy.
I am happy to recommend my gynaecologist if you are anywhere near London/ Home Counties.
I am on Kliofem and testosterone and have been for the last 6 years and it's given me my life back.
I hope you get the help you need - it's horrible to feel like it.