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Menopause

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Is there a general chat thread for peri sufferers waiting to start HRT?

105 replies

thenewaveragebear1983 · 20/08/2023 19:45

Admittedly, quite a niche group demographic, but anyone who wants a general chat really.

I’ve been struggling since my “diagnosis” 2 weeks ago, and I’m waiting to see my gp again. She has said she will prescribe hRT, I was waiting for some bloods to come back but she wasn’t expecting anything in the bloods to change her decision . My previous bloods showed Subclinical hypothyroidism as well, which could also be contributing to my symptoms. I was doing ok but then today I’ve had a total anxiety attack driving my car with my dc in the back and it just feels so overwhelming and awful. The anxiety bubbling away is so draining and I feel like I just would like to talk to people who understand how hideous this is.

so if there’s anyone out there who would like a chat thread, please say hi 👋

OP posts:
thenewaveragebear1983 · 26/08/2023 07:41

@tigertummy i imagine it’s quite a balancing act to get the thyroid and the HRT to work together. They’ve said if my thyroid is still low in 3 months they’ll consider thyroxine for me, but I was very borderline.

i’m starting my patches tomorrow, I am half dreading it, but half… is excited the right word? I’m very keen to see if this improves my symptoms and my general well-being I guess. Hormones are weird though, aren’t they? This week I’m on my period and I’m like a different person to last week- the dark cloud has lifted, my heart isn’t pounding with palpitations and my breathless/jittery feeling has mostly gone, I’ve slept better, I’ve not cried or been tearful, and the general just anxiety has lifted. I can’t explain that dark, blood runs cold feeling, but for a week before I come on I have it constantly. So I am really hopeful that even if HRT can balance that out, it will be worth it and an improvement. 🤞 I need to buy a notebook today as I want to track all my symptoms and track my days.

OP posts:
NooNakedJacuzziness · 26/08/2023 08:36

I'm suffering with bad joint pain in hips and shoulder. Told the GP I wanted to discuss HRT but she's sending me down the x-Ray and rheumatology route (really long waiting list for rheumatology). I wish I'd made up some other symptoms now - I'm sure it's hormone related because after a period the pains disappear for a bit. GP hasn't seen me face to face, only by phone - so frustrating!

Weedoormatnomore · 26/08/2023 08:58

Wish I had come across a thread like this before.
I spoke to Dr to request a test but got told no as they can be in conclusive however recommend I consider hrt as sounded like I was peri from my symptoms . Didn't do anything as started to feel better however this month got so anxious with work I resigned.
Roughly how long did it take for those of you on hrt to feel less anxious brain fog to go or just get better night's sleep?

perilady83 · 26/08/2023 09:51

@Weedoormatnomore probably about 3-4 days! Was pretty fast.

perilady83 · 26/08/2023 09:52

Also joint / hip pain has gone jist realised. Was in pain waking up each morning and had to do stretches etc, fine now.

thenewaveragebear1983 · 26/08/2023 10:30

@perilady83 that’s so good to hear. I also have aching, i am a runner and always put it down to that but it’s only recently I have realised that I actually ache all the time, even if I don’t run for several days. Ankle and foot pain is my nemesis, although it does go up to my hip sometimes. I also get this very strange burning ache in my right (only the right) thigh in the week before my period. Never excruciating but just ‘there’. Reassuring to hear that I may get some relief from this.

OP posts:
Weedoormatnomore · 26/08/2023 18:07

@perilady83 thank you will book gp appointment.

CommaChameleon7 · 26/08/2023 21:44

I think I've found my people! Finally plucked up the courage to speak to my GP this week. Was reassured to actually feel listened to. Am booked in for bloods next week to check for FSH but he said based on my symptoms he will likely prescribe HRT following a BP check.

Some really good advice on here. Keen to see how things go for us

SlowlyLosing · 26/08/2023 22:57

I probably belong here but really don't know what is normal and what isn't. I downloaded a symptom tracking app but thought it was useless for less obvious symptoms, DH could tick as many as I could.

I'm 47, periods still clockwork but sooooo heavy, over in 2 days max. So there's definitely something happening.

I have hip pain, really uncomfortable calves and ankles - I'm very active but don't do 'real' exercise.
I dont think I get proper hot flashes but if Im overly active late at night, like running up and down stairs twice, I get dizzy and hot and my heart beats so fast I have to lie down.
I'm struggling to fall asleep for no real reason, my brains going mad but not about anything in particular.

Mentally I've always been inclined towards mild depression and I do often feel down but it's more overwhelmed and hopeless than depressed.
Im ND and can't really figure out what anxiety feels like. I know what worry feels like but in that case you know what you're worrying about. I often feel like you do when you miss a step and nearly fall, like adrenaline running through you and skin crawling - DH says its like that?

None of these really sound like they're definitely peri? Even put together they could easily be related to just living a busy and complicated life and getting a bit older?

I'm autistic and don't go to the doctor in general. I don't think I've ever been taken seriously about anything that wasn't an injury. I'm pretty sure I could point to the NICE and insist on HRT but what if I don't need it? There are downsides to it too.

I've read up a lot, it sounds like a lot of work to get dosages and combinations right. I dont want to go through all that if I don't need to, the stress will make me worse. But at the same time what if I could take a tablet and it all goes away?

Anyone else like this who then took HRT and it vanished?

thenewaveragebear1983 · 27/08/2023 08:21

@SlowlyLosing defining anxiety is really hard isn’t it? My general ‘day to day’ anxiety seems to be that my brain is ‘ramped up’- everytime I’m quiet or by myself, my thoughts kick in. I seem to think darker things (eg worries about my children, or the general ‘future’, or I’ll think about how I’d cope if my dh left me or died, and then I feel really really guilty about even thinking those things as if somehow thinking it would make it happen). I suffer with palpitations and these ramp up, but they don’t seem to actually raise my heart rate. I get a weird tight feeling in my lungs like when you have a chest infection and your lungs burn. When it’s really bad I just feel like there is a dark dark cloud over me, just a sense of absolute impending doom. My blood runs cold. It’s all what if, what if, what if. It’s absolutely exhausting and at its worst I would be like that all day with no respite.

I also suffer with driving anxiety and that is more like claustrophobia, I feel trapped in the car on the road and just have this overwhelming urge to stop and open the doors. When I see roads up ahead of me I feel trapped and it’s not like I’m scared as such, it’s like I must escape. It’s like a complete sensory overload being bombarded and again it is completely exhausting. I can only manage short journeys because I’m literally exhausted by the experience.

I also have health anxiety- characterised by a lot of symptom spotting/checking, Dr Google, and again, an overwhelming feeling of doom. It’s not been helped by the palpitations and fluttering feeling because I have been very worried that my heart was just going to stop. The only ‘respite’ I get from this is that when I workout I don’t get excessively breathless so I am reassured because I wouldn’t be able to run 5 miles if I had heart disease, and also that if I did have eg. Leukaemia or some other hidden cancer, I’d probably be dead by now (which I know is a terrible thought but after 2 years of symptoms it’s probably true)

the skin crawling and adrenaline feeling is also something I suffer with, there is actually quite a lot online about this internal fluttering feeling that’s associated with peri. I’ve had that for years, in fact I’d say it’s one of my first symptoms and I always associated it with insomnia because I will lie in bed and feel like my whole body is vibrating, it’s as if the bed is trembling. Such a weird feeling. I’ve started having that in the day more now, like a light fluttering feeling in my chest and abdomen, it makes me feel sick and quite weak. Again, it is a peri symptom.

I suppose the decision as to whether to try HRT or not, or whether to treat the individual symptoms (eg with anxiety/antidepressants?) or whether to carry on and maybe make lifestyle changes to help you lies with you. I personally started by writing it all down, looking at the whole package of symptoms and the impact it was having in my life. The main one for me is the anxiety. Nice guidelines are that they should treat on symptoms alone if you are suffering.

OP posts:
thenewaveragebear1983 · 27/08/2023 08:26

Also- sorry about the essay! - but when my anxiety is high, it is completely outside of my control. I know from the moment I open my eyes that it’s going to be an anxiety day. And conversely, if it’s a good day, I cannot recreate the feeling. I can’t eg. Think about something I normally am anxious about and recreate that ‘doom’ or ‘blood runs cold’ feeling. I don’t feel like it’s in my head, I feel like it’s a chemical thing, I’m completely powerless to stop it.

OP posts:
Weedoormatnomore · 27/08/2023 08:40

Just tried to book gp appointment why do they have online booking that you can only use for a few hours a day during the working days! Finally decided to do a 3 month trial of hrt as suggested by Dr.
Was awake most of last night worrying if I did the wrong thing quitting my job!
Still shocked at her response could I not have done it sooner so they could get the job advert out before the long weekend!

thenewaveragebear1983 · 27/08/2023 08:55

@Weedoormatnomore I quit my job (I was a pastoral officer in a secondary school) in October with nothing lined up and gave them a weeks notice! I ended up having a few weeks off then temping for a few weeks and now have a really nice, stress free, work from home office job. I still wonder if i made the right decision because I enjoyed my previous job but honestly, my quality of life is significantly improved now. Their response to you tells you a lot!

OP posts:
tessellated2 · 27/08/2023 09:10

Just ducking in to say that I've been on HRT for a year. It's honestly changed my life.

I can see in retrospect that I had become an aching, tired, irritable, sobbing mess.

Anxiety, which I'd never had before, was so bad that I had just about become a shut-in. I barely ever left the house.

It was such a relief to get my life back.

I hope it works just as well for all of you.

tigertummy · 27/08/2023 16:52

@thenewaveragebear1983 fingers crossed you see a big difference in how you are feeling!!

@SlowlyLosing which app have you got? I'd like to start doing some more sensible tracking than just adding odd things to notes on my phone

Weedoormatnomore · 27/08/2023 16:56

@thenewaveragebear1983 so good to hear things worked out well for you. I had to give 3 months notice. Applied for couple of jobs waiting to hear back but thought now could be a good time to sort out my health.

HerAvatar · 27/08/2023 17:44

SlowlyLosing · 26/08/2023 22:57

I probably belong here but really don't know what is normal and what isn't. I downloaded a symptom tracking app but thought it was useless for less obvious symptoms, DH could tick as many as I could.

I'm 47, periods still clockwork but sooooo heavy, over in 2 days max. So there's definitely something happening.

I have hip pain, really uncomfortable calves and ankles - I'm very active but don't do 'real' exercise.
I dont think I get proper hot flashes but if Im overly active late at night, like running up and down stairs twice, I get dizzy and hot and my heart beats so fast I have to lie down.
I'm struggling to fall asleep for no real reason, my brains going mad but not about anything in particular.

Mentally I've always been inclined towards mild depression and I do often feel down but it's more overwhelmed and hopeless than depressed.
Im ND and can't really figure out what anxiety feels like. I know what worry feels like but in that case you know what you're worrying about. I often feel like you do when you miss a step and nearly fall, like adrenaline running through you and skin crawling - DH says its like that?

None of these really sound like they're definitely peri? Even put together they could easily be related to just living a busy and complicated life and getting a bit older?

I'm autistic and don't go to the doctor in general. I don't think I've ever been taken seriously about anything that wasn't an injury. I'm pretty sure I could point to the NICE and insist on HRT but what if I don't need it? There are downsides to it too.

I've read up a lot, it sounds like a lot of work to get dosages and combinations right. I dont want to go through all that if I don't need to, the stress will make me worse. But at the same time what if I could take a tablet and it all goes away?

Anyone else like this who then took HRT and it vanished?

I could have written parts of this post, I'm autistic too and feel almost as overwhelmed by the complexity of HRT types and dosages as I am by trying to work out what's peri and what's just life/ageing. I don't go to the Dr's normally either, have had to brave it now as my hot flushes are horrendous and I'm sick of not sleeping but it didn't go particularly well and I'm no further forward really. I don't know which prospect is worse, putting up with my symptoms or trying to navigate the whole getting a GP to listen/prescribe in the first place and then finding the right HRT/dosage thing, both feel overwhelming and make me want to hide in bed til it's all over Blush

thenewaveragebear1983 · 27/08/2023 19:45

Yes the complete myriad of options is totally overwhelming isn’t it? My biggest concern was the progesterone and there are some worrying sounding side effects, so it was important to me that anything I am put on could be stopped immediately- hence, no mirena coil. I also wanted local rather than systemic, so I have ended up on patches. Maybe it’s easier to consider it in that way rather than read up on everything over and over. We must also remember that most women do feel better on it and if they don’t, all those options mean that at least there are alternatives to try.

OP posts:
username100001 · 27/08/2023 20:05

thenewaveragebear1983 · 27/08/2023 08:21

@SlowlyLosing defining anxiety is really hard isn’t it? My general ‘day to day’ anxiety seems to be that my brain is ‘ramped up’- everytime I’m quiet or by myself, my thoughts kick in. I seem to think darker things (eg worries about my children, or the general ‘future’, or I’ll think about how I’d cope if my dh left me or died, and then I feel really really guilty about even thinking those things as if somehow thinking it would make it happen). I suffer with palpitations and these ramp up, but they don’t seem to actually raise my heart rate. I get a weird tight feeling in my lungs like when you have a chest infection and your lungs burn. When it’s really bad I just feel like there is a dark dark cloud over me, just a sense of absolute impending doom. My blood runs cold. It’s all what if, what if, what if. It’s absolutely exhausting and at its worst I would be like that all day with no respite.

I also suffer with driving anxiety and that is more like claustrophobia, I feel trapped in the car on the road and just have this overwhelming urge to stop and open the doors. When I see roads up ahead of me I feel trapped and it’s not like I’m scared as such, it’s like I must escape. It’s like a complete sensory overload being bombarded and again it is completely exhausting. I can only manage short journeys because I’m literally exhausted by the experience.

I also have health anxiety- characterised by a lot of symptom spotting/checking, Dr Google, and again, an overwhelming feeling of doom. It’s not been helped by the palpitations and fluttering feeling because I have been very worried that my heart was just going to stop. The only ‘respite’ I get from this is that when I workout I don’t get excessively breathless so I am reassured because I wouldn’t be able to run 5 miles if I had heart disease, and also that if I did have eg. Leukaemia or some other hidden cancer, I’d probably be dead by now (which I know is a terrible thought but after 2 years of symptoms it’s probably true)

the skin crawling and adrenaline feeling is also something I suffer with, there is actually quite a lot online about this internal fluttering feeling that’s associated with peri. I’ve had that for years, in fact I’d say it’s one of my first symptoms and I always associated it with insomnia because I will lie in bed and feel like my whole body is vibrating, it’s as if the bed is trembling. Such a weird feeling. I’ve started having that in the day more now, like a light fluttering feeling in my chest and abdomen, it makes me feel sick and quite weak. Again, it is a peri symptom.

I suppose the decision as to whether to try HRT or not, or whether to treat the individual symptoms (eg with anxiety/antidepressants?) or whether to carry on and maybe make lifestyle changes to help you lies with you. I personally started by writing it all down, looking at the whole package of symptoms and the impact it was having in my life. The main one for me is the anxiety. Nice guidelines are that they should treat on symptoms alone if you are suffering.

Omg. This is me! Driving anxiety terrible and I feel like I'm trapped on the road and desperately need to get off. The vibrating body feelings drove me up the wall as well. I started HRT 6 weeks ago and I feel quite good right now. Who knows if it's HRT working or the fact I've worked bloody hard with anxiety self help stuff. I'm 40

thenewaveragebear1983 · 27/08/2023 21:19

@username100001 that’s reassuring to hear. Have you noticed any improvement in the driving anxiety? The driving one is the one people don’t really understand I find, because they seem to think that if you just get out and drive more you’ll get over it, it will get easier. But if anything it makes it worse. I did a hypnosis for driving anxiety and it said ‘imagine driving and feeling really calm, enjoying the drive’ and I couldn’t visualise it and never listened again.

OP posts:
username100001 · 28/08/2023 08:43

I'm getting better than I was but still find it tricky on motorways as I really feel trapped on them. I had a panic attack in the car a few months ago and that was awful. Heart rate went from 60 to 160 very quickly just from thoughts about the road ahead. No one really understands 😞 I now have propranolol which helps and I take that if I'm feeling particularly anxious

thenewaveragebear1983 · 28/08/2023 20:34

Good evening ladies, hope everyone has had a nice bank holiday?

so, I’m on day 2 of my patches. I’m really trying not to be too hung up on symptoms, as I have health anxiety and I can drive myself round the bend with it….. but- a few things I have observed even in these 2 days.

  • I struggled to sleep last night, felt really wired
  • my overall aches and pains were a little less this morning and even less this evening. I did run 5 hilly miles yesterday as well so I’d expect to ache
  • my bladder seems a little less sensitive, eg. I haven’t had to go to the toilet as frequently today and when I have been I haven’t immediately felt like I need another wee (this usually seems to last a while after going then fades)
  • the weird burning heavy feeling in my chest was not there this morning for the first time in a very long time and I haven’t felt breathless nearly as much today.

now- I know it’s very early days but I am enthused by these little but noticeable changes.

OP posts:
Weedoormatnomore · 28/08/2023 21:10

@thenewaveragebear1983 that is quick if your noticing good changes after 2 days.
Didn't realise the nonstop feeling like you needed to wee was a symptom. Even after you had just been.

thenewaveragebear1983 · 28/08/2023 21:13

@Weedoormatnomore yes, the irritable bladder can be a symptom!

OP posts:
Tina221 · 28/08/2023 21:28

Thanks for this thread @thenewaveragebear1983 I didn’t realise that was a symptom either. I visited my gp a while ago but was put off when she mentioned breast cancer risk. I didn’t even make the blood test appt but after reading your thread I’m going to arrange a blood test and go back to the gp and ask for HRT x