Menopause Matters Forum
Menopause Discussion => Postmenopause => Topic started by: Tribbins on April 19, 2023, 03:38:56 PM
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Hi all
I just wondered if I can get some advice from others who have experience of taking HRT when they have suffered from issues created by hormonal changes. My last period was just over 7 years ago, I'm nearly 59 now. And what a ride it has been. On the way I have experienced night sweats, chronic migraine, rosacea, exhaustion, hair loss, complete loss of libido, everything has dried up and shrunk (!), digestive issues, 'adult asthma', constipation, insomnia, anxiety, lack of motivation, last time I went for a smear it was too painful for the nurse to get the speculum thingy in. She told me I should go to my GP as we shouldn't have to live like this. So anyway, the migraines have definitely lessened, much less painful but still quite frequent. Still having night sweats and poor sleep. The exhaustion is phenomenal. Feel like a husk, or a shell. I don't know where I went, if that makes sense. Doing anything requires an enormous amount of effort. I have made GP appointments but it's hard work - last time I felt like I was fobbed off with a prescription for Mirtazapine. I feel sedated enough as it is without extra help! I've had to cut my work days down to two, and even then I feel drained. I had to take two complete years off when migraine was at its worse, always being told by GPs that it wouldn't last. Well it has! Every year I get full bloods taken but I'm otherwise in good health, last time was last month. I try to run a few times a week but just so knackered and unmotivated. I can't get excited about anything that I used to enjoy. Apart from food. Prior to menopause I struggled with painful, heavy periods and terrible PMS. I felt great when I was pregnant but had worse migraines.
I feel like I should have been offered HRT instead of a brain scan and a colonoscopy, but I also held back from asking for it as hormonal changes have caused me so many issues and maybe taking more will exacerbate migraine and rosacea again. Does anyone have any experience of these things getting better or worse with HRT? Also I'm hugely sensitive to a lot of medications, and did try Evorel Conti during peri menopause with not-so-good results (used a 1/4 of a patch then felt like I was on speed, got massive migraine and bled really heavily). Think I still had too much of my own hormones at the time. Not wanting to be negative, but this just feels like the slippery slope to death (sorry) and I feel like I have already watched 10 years go by from when symptoms started, whilst feeling like I'm only half alive. I've got a GP appointment this week and I want to know what to ask for - if I get something that doesn't suit me, it will be a while before I can get another appointment, and I don't want to be fobbed off again. Any advice please on how to tackle this?
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Hello Squibbins and welcome to the forum. The symptoms you describe can definitely be addressed by HRT. With HRT it can take time to find one that suits and often the first one we try may not be the right one for us.
I am very sad you have been struggling for so long and clearly not been given any decent advice from your GP.
Vaginal dryness, constant need to wee, UTI type symptoms are caused by lack of estrogen and localised oestrogen taken vaginally will ease all those symptoms. It is frustrating that many GPs are not aware of this and it is easily treated.
I can understand why you feel so low. With all that you have going on you are bound to feel this way. You have come to the right place. You will find lots of support on here.
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Welcome squibbins and what a rough ride you are having!
The first thing to ask for is Vaginal Atrophy treatment.
You mention side effects of medications but unless you again give systemic HRT a try you won’t know whether you will be able to tolerate it or not, it’s not always the golden ticket for a lot of women unfortunately. It will be trial and error at first and you might have to try other HRT meds before you get a regime that suits you.
Be assertive at your appointment because you definitely need help, particularly with Vaginal Atrophy that you no doubt are suffering from.
Do a search for Vaginal Atrophy on here, there are tons of posts on the subject, all very informative.
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Make sure that you ask for a referral to an NHS Menopause Clinic - there R waiting lists so sooner rather than later: not a Gynae as they often don't know any more than some GPs seem to!
Let us know how you get on.
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Hello squibbins and welcome to the forum.
I'm sorry that you have had such a rotten time.
I agree with the other ladies that you have a right to try HRT and some treatment for vaginal atrophy.
The most up to date form of HRT is Oestrogen gel that comes in a pump or a sachet and can be rubbed into your skin. As you know patches are also available.
I assume that you still have your womb in which case you will need to also take some progesterone. The most often prescribed is Utrogestan which is listed in the GPs formulary as Micronised Progesterone.
You may be well aware of all the above but if you need to know more you can search for HRT products on this site.
Finally you say that your doctor arranged regular blood tests and I wonder if your Vitamin D levels have been tested? Apparently many of us are low in this vitamin which is really a hormone.
Wishing you well and let us know how you get on.
K.
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Hi Squibbins,
I'm so sorry to hear what an awful 10 years you have had. I can relate to some of the things that you have described and know how bleak the future has felt for me at times But there is hope and you mustn't give up.
I dont know much about VA "yet" :o but systemic HRT should alleviate many of your symptoms. It is not a magic bullet and may need some tweaking along the way but if you can improve some things life will seem brighter. If you get gel you can tweak the dosage a bit more easily than with patches but it's a very personal thing. Usually it is recommended to try for 3 months so may be get another GP appointment booked in for then if you can, if not earlier for a review.
If you haven't got the energy to run just get your trainers on and plan to do a short walk. Once you are out you then may feel like going further or running. Get out there in the fresh air but don't put too much pressure on yourself and go with the flow. Have you got a buddy who you could meet up with while you're out? Talking burns up extra calories too ;)
Good luck and let us know how you get on X
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Thank you all for being so welcoming and supportive, I am definitely going to ask the GP for HRT, these telephone appointments aren't the easiest way of communicating personal stuff but I will mention the vaginal atrophy. I think what makes it difficult is never seeing the same GP twice and everything being done by phone, it is kind of awkward to talk about genitalia on the phone with someone I've never met - however - it has been several years since I was able to have an active sex life (not sure I could even if I wanted to) and feel a bit sorry for my poor husband. My sex drive disappeared almost overnight about a year after my last period, so I don't really miss it, but I miss the closeness.
Apparently my vit D is within the ok range this year, although it registered as low previously. I have been supplementing over winter but coincidentally when I started with the exhaustion it was in January 10 years ago - and it lifted in the summer months. Then same thing every year until it became a permanent thing a couple of years ago. I even tried a light box one year which triggered migraines so I couldn't continue with it.
I didn't even know there were any NHS menopause clinics! I thought they were all private. So I just googled it and found out there is one in Kendal, so not far from me. I will definitely mention this to the GP.
Big thanks and I will post an update after the appointment.
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Good luck Squibbins. I totally agree that telephone appointments are more difficult than F2F and also it's harder with different GPs. Maybe you could ask this GP for a follow on call with them (if you feel happy to do so and it's possible). I've recently managed to have 3 calls with the same GP who I think is good and it's really helped me have continuity.
Write everything down before your call so you can keep focused and cover everything you want to.
Let us know how it goes. X
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Hi Squibbins, so sorry you have been through some awful symptoms, you are definately not alone! I put up with all of the horrible symptoms like yours for 9 years after my last period before going to see my GP in 2019 at age 63 to ask for HRT. He refused and said I was too old (!), but I insisted on a referral to the local NHS menopause clinic which he did. I saw a consultant there who put me on HRT straight away (gel and Utrogestan) and have been on it ever since. He sent a letter to my GP who put all the HRT on repeat prescription which is still the case today. I have also been on Vagifem every other night for years now.
I have tried Femseven conti which he also mentioned at the first consult which wasn't available at the time. I tried it when it was back in production, but the adhesive irritated my skin so had to stop that one and went back on the gel. I have also tried Estradot 50 along with Utrogestan which were fine for me, but have now gone back on the gel due to supply issues of the patches. I also tried Evorel conti for a while but I had a few light bleeds so stopped that.
I was also given Tostran gel after 3 months. I use one blob twice a week and it has all managed to improve my libido and response quite a lot much to my surprise! No longer have the awful pain that I previously had which ruined my sex life.
I still have anxiety, joint pains and tiredness which the HRT still doesn't seem to have "fixed", but I have been recovering from a bowel cancer op and chemo for 18 months so it has all taken it's toll and not sure I'll ever be quite the same!. HRT is the only thing that has ever got rid of my hot flushes, and whenever I've tried a break from HRT they come back within 2 weeks, so am staying on it as long as I can.
So I hope you manage to get an appointment with a meno clinic and start on the road to a better you in the future. Good luck! xx
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Thank you Dotty, I am going to sit down this evening and write out what I want to say to the GP, as I'm already starting to feel anxious about the call. I don't want to end up getting fobbed off again, it's gone on for so long.
Julia - how long did it take from referral until you got a clinic appointment? I think the gel sounds a better bet as it seems more flexible in the amount you use, I'm glad it has given you some symptom relief. It's the tiredness that I am really struggling with - at the same time I am terrified of HRT exacerbating the migraines as they have definitely calmed down, only get a couple of 'mild' ones each week now. Did the clinic or the GP prescribe the Tostran gel? Sounds like it has worked well for you :-)
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Oh I love the Lakes 8) except when it's raining ;-)
R U able to take a cancellation appt in a Clinic, if a lady doesn't turn up for example or rings in that day and isn't keeping the appt.? U could ring the menopause clinic, some take self referrals. Do take a list of your concerns to any appts from now on in, my GP takes mine from my hand, reads it and we go through to prioritise.
Altering the delivery of HRT can impact on absorption and reactions. I wish that GPs/manufarcuters were aware that it might not be a simple swap!
As oestrogen levels drop the body may become dry inside and out as well as muscles may become lax = aches and pains. GPs often don't join those dots!
Let us know how you get on.
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Hi CLKD, I will definitely update on the outcome and will have a look at whether the clinic takes self-referrals. Unfortunately I can't give the GP a list as it's phone consultations only, which I struggle with (think it's brain fog that stops my brain absorbing information unless I can see someone).
I've had so many menopause related complaints over the last 10 years - shoulder pain, tendonitis, IBS, neck pain, bowel issues and the bloody migraines - but they have all been treated as isolated issues, not one GP has ever mentioned menopause or HRT.
Off to write my list :-)
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Tick!
MayB ask for a face2face with the Nurse Practitioner.
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Hi Squibbins,
It was back in Sept 2019 my first appt with the Meno clinic, so pre covid. Think it took about 6-8 weeks or so after the referral. I got the Tostran gel after 3 months on HRT from the clinic, which appears to the standard practice, and it is now on repeat prescription "as per specialist" as don't think Gp would have prescribed it. I have tried a few breaks from the Tostran as did get sore boobs initially, but have been back on it since last September, seems to have settled down and can really tell the difference!
During the pandemic the clinic closed down and I have never been called back since. I have to discuss any changes with my Gp now.
I wish you well and hope you manage to get some symptom relief if you do decide to try HRT, these flippin hormones are a real pain!! x
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It's off licence for women >:(
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Hi Squibbins
:welcomemm:
So sorry to hear about all your menopausal woes.
I would suggest - get thee some HRT and vaginal oestrogen asap!! Don't worry about testosterone for the moment.
But first - have you had thyroid function checked and if so what were the results (although NHS are not good with thyroid as they don't test everything that needs testing...). There is an increased incidence in underactive thyroid in menopausal women which can lead to exhaustion (feeling cold and unexplained weight gain are other tell-tale signs) - but can also interact with menopausal hormone changes such that it can be difficult to work out what's causing what. I'm not an expert on thyroid but there are forum members who are, if needed.....
If you are still having night sweats then HRT will help.
I will give a different recommendation than some of the others. As you have been so long without oestrogen I would recommend patches (this is what I use) because the dose is probably more consistent and you only change them twice a week, so you could start low - so a 25 mcg patch and gradually increase if necessary.
The other problem is the progesterone If you are exhausted already and fatigued then continuous progesterone may well make this worse, especially Utrogestan - because you need a high dose in order to protect the womb - without going into details, so initially I would suggest a cyclical progestogen so that you could see how you get on with just oestrogen. However, downside is having a monthly withdrawal bleed. Alternatively you could take utrogestan on a long cycle eg 6 weeks if you're only using a 25 mcg patch. This is very much off licence so ideally would need a specialist to oversee, but the products are all available on NHS.
Also you really do NOT need to see a menopause specialist to be prescribed HRT in the first instance! Just ask for it from your GP but do some research beforehand so that you know what type you want and why, and then insist. At the same time ask for a referral so that a specialist can advise on any tweaking but at least you can get started on the road to recovery. I am late 60's and have been on HRT for 16 years....
Vagifem or estriol cream will help with the vaginal problems. Really your docs have been remiss in not suggesting this earlier though I guess if you didn't get on with Evorel conti previously perhaps they/you are/were wary of going down this route again? Anyway as flossteacake said it can take several goes to find the right one.
Oh yes and rosacea. Not exactly sure about this but before I went onto HRT I started to get horrid red itchy blotches on my cheeks - which some refer to as menopausal acne. This completely disappeared when I started on HRT and only began to return when I stopped HRT once for 3 months, 12 years ago, and has never returned since remaining on HRT.
Hope this helps and if you want more specific advice please ask!
Hurdity x
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Thanks Hurdity, what you have said about the progesterone is really interesting. I will take that information to the next appointment. Thyroid was tested recently, I don't know what the reading was but was just told all my bloods were fine. I do get very cold, but think that is because I just sit and stare at the wall a lot - once I start moving around I warm up. No particularly serious weight gain, just a spare tyre which usually reduces when the weather gets warmer. I have been told that I have slightly raised cholesterol in the past but they didn't even mention that last time.
Also interesting what you say about rosacea -mine started when I stopped breastfeeding - I think the sudden drop in hormones triggered it, lots of awful flushing, terrible spots and also ocular rosacea. I was given antibiotics for many years to control the inflammation and now maintain it with finacea gel, which is brilliant. Strangely, it flares up every year in early spring. Yes I have been wary of using any form of hormones as I'm really worried about worsening the migraines again, which have probably been the most disabling part of menopause for me, although the fatigue and lack of interest in anything appear to have taken over.
I spoke to the GP yesterday and she was really helpful and agreed that I need some HRT and would prescribe after I had done blood pressure readings. So off I went to the health centre to use the blood pressure machine, but all the readings came back as quite high, between 130 and 148 systolic, although the diastolic pressure seemed ok. Anyway, after having handed them in at reception I received a text booking me in for a further telephone appointment in 10 days, so I called the docs as I was a bit concerned about the blood pressure thing, and they just said not to worry but GP probably just wants to discuss it and prescribe the HRT. Now I just feel a bit confused as I thought it would be sorted, but anyway, more of an opportunity to discuss the progesterone now that I have further info! I can also ask about the referral to the specialist as I didn't get that one in yesterday.
Julia, does your GP now prescribe the testosterone as CLKD has mentioned it is off-licence? I googled it and it sounds effective, but can raise blood pressure so that might count me out now.... also read something earlier about women's libido not usually disappearing for around 10 years post menopause - well I don't know where they got that from, mine went almost overnight within a couple of years.
I can't say how grateful I am for the supportive and knowledgeable responses, thank you :-)
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Hi Squibbins, yes, my Tostran is on repeat prescription since the Meno clinic prescribed it. It actually says "as per specialist". It does last a long time as I only use it Mondays and Thursdays. My Oestrogel also says "as directed by OPD" (guessing that may mean outpatients dept??) My HRT is conti, as I didn't want a bleed but as Hurdity says, there are other options.
Your symptoms in general seem to match most of mine!!
My libido disappeared also very quickly and despite lubricants, sex was very painful (razor blades have been mentioned by others-ouch). But over time with Vagifem and HRT this has been so much better for me, can't quite believe the difference, although I do have some episiotomy scarring at the entrance which can be tender, but nowhere near as bad as before.
Also, your blood pressure may be slightly higher when you are having it tested, if it's the dreaded "white coat syndrome". Mine always goes up when am at the Drs :-\. I have a wrist monitor at home and find that useful for me to keep an eye on it.
Hope your next telephone appt goes well.
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Hi again Squibbins - I would actually ask for the details of your thyroid reading because just saying all bloods are fine doesn;t really answer that specific query. For example what were the TSH and T4 readings? Were they near the bottom or top of the reference range? I'm not saying it is an issue but you want to rule it out.
Re Tesosterone - if I haven't said already, I also get mine on repeat thought NHS doctor now - since 2015.
All the best
Hurdity x