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Author Topic: Getting worse not better  (Read 2886 times)

WildOtter

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Getting worse not better
« on: November 19, 2023, 01:48:05 AM »

Surgical menopause following cancer treatment last year. Was ok for a while on Evorel 50 but then they stopped working (extreme fatigue, aches, depression, detachment- felt like a 90 yr old zombie). Upping the patch dose made no difference so the doctor put me onto oestrogel. 

It blew away my brain fog but left me with horrible anxiety, palpitations, tight chest, uncontrollable crying jags. It's been nearly 2 months now without improvement. I can't work. I can't do anything except cry or stare at the wall. I feel so shit and I can't imagine ever feeling better. I just want to end things.
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Gnatty

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Re: Getting worse not better
« Reply #1 on: November 19, 2023, 08:17:04 AM »

I am so sorry that you are still struggling. As a fellow Surgical Menopauser I can tell you that things will get better, please don't think you are stuck where you are forever. I have a few suggestions for you:
Join the Surgical Menopause UK support group on Facebook. You will get so much support from there from women who have gone through the same difficulties.

Is paying privately to see someone an option for you? I know it shouldn't have to be this way but it will certainly speed things up if you can afford it. You would need to see someone who specialises in Surgical Menopause and again you will find links on the Facebook Group.

In the meantime, regarding the oestrogel - some women in SM do have difficulty with it, others love it. You could try splitting your dose morning and night, try not rubbing it in too much or..... Maybe the dose is too high and you need a lower dose but need testosterone for energy. Or maybe you will be one of those women in SM who although they don't need progesterone to protect their womb find they actually need it for their mental health because it seems to balance out the oestrogen symptoms of feeling wired.  Again on the Facebook group you will see there are lots of us like that.

Sooo there is a lot to think about and it can feel overwhelming because there are so many possibilities. Hence my suggesting if you can to find a Specialist to help you navigate the path.

Please don't believe things won't get better. I felt like that in the early stages and now I feel better than ever. You will too xx
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Nas

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Re: Getting worse not better
« Reply #2 on: November 19, 2023, 08:24:29 AM »

WildOtter, I’m saddened to read you are going through the mill right now.

Okay, so patches haven’t worked and gel has wiped away the brain fog, but given you anxiety and other symptoms instead.

What dose gel are you using? It may be that you need to increase your dose? Or change method. There is an oestrogen spray called lenzetto which some women prefer. Alternatively, there are various oestrogen tablets, which you may absorb better?

Unfortunately, it can take many months to find the optimum dose of HRT. Do you take progesterone also? If so, that can also make some women feel pretty rough and bring on unwanted symptoms in itself.

Could you afford to see a private meno specialist? I know you shouldn’t have to, but they can work with you, to try and help you balance your hormones. Unless there is some one at your practice surgery who is up to speed with menopause?

Also, look up the make menopause matter FB page. It’s fantastic and run by a lady called Diane Danzebrink. She was plunged into surgical meno, following a hysterectomy and she and her team work tirelessly to help support women manage their hormones. They offer very reasonably priced consultations for women, when private is unaffordable.

Self care is important too. Good food, sleep when you can, gentle exercise etc.

I hope you can find a way forward, it’s a horrible time of life ( i think personally!) The ladies on here are the best and will support you.

This won’t be forever.. better times are ahead.

Take care xx

 
« Last Edit: November 19, 2023, 08:26:47 AM by Nas »
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CLKD

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Re: Getting worse not better
« Reply #3 on: November 19, 2023, 09:09:07 AM »

 :hug:
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sheila99

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Re: Getting worse not better
« Reply #4 on: November 19, 2023, 09:43:40 AM »

I'm sorry you feel so bad. How much gel are you on? Anxiety and palpitations are symptoms of too much oestrogen as well as too little so it's possible you're on too much rather than too little. You might be absorbing differently too. The nhs don't usually test levels but it might be worth asking.
You may also benefit from testosterone and a few people feel better with a small amount of progesterone.
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WildOtter

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Re: Getting worse not better
« Reply #5 on: November 19, 2023, 02:49:26 PM »

I'm on 2 pumps. I've tried to increase to 3 but it makes the symptoms unbearable. I've tried doing 3 every few days, it still doesn't help.

My GP did a blood test last week and my levels were still low (though higher than they were on the patches). But I've made repeated attempts to increase the dose and I just can't last more than a few days before it gets too bad. 

I can't take tablets as I have a history of blood clots.

I can't afford to see a private meno specialist. I can't work at the moment so my financial situation will only get worse.

My GP won't consider testosterone or progesterone and keeps saying I have to try 3 months on gel - but it's been 2 months now and the palpitations and anxiety have got worse not better.  I also have no idea what could replace the gel, she did write me a prescription for estriodot once but nowhere has it. I cannot continue to live like this, i went out to the shops last night and came so close to not coming home.  It feels utterly intolerable and there isn't anyway to escape it.  It is ruining my life, I can't work, I'm repulsed by my partner trying to touch me, I haven't done housework in months, I've gained 3 stone in 6 months and I feel disgusting, none of my clothes fit and I can't afford to buy new ones, I don't want to go out and see people because I feel so gross and can't get through a conversation without crying.
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pastie supper

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Re: Getting worse not better
« Reply #6 on: November 19, 2023, 04:12:09 PM »

Big hugs to you for a start!

Have you tried an antidepressant? You have every reason to be depressed, cancer treatment and then not being able to work is very demoralising, exhausting, scary and generally STRESSFUL.

Whether you're on antidepressants or not, you have to pester your GP for more help.

They are mostly overstretched beyond their ability to give the statutory services, so if you need to, get someone else to fight to get hold of a doctor for you, people are being left without life saving services, but not everyone is.

You need to be able to fight your way to the front and it sounds like you are too easily pushed away and not receiving the help you need and deserve and have paid for all your life.

It's true, each type of HRT is meant to be tried for three months, most women will have a good idea whether it's going to be successful by the end of two months. Your doctor ought to listen to you and stop wasting your time like this. It's your life that is being taken apart, or more to the point you haven't been able to pick up the pieces yet because your GP is being stubborn about a very arbitrary guideline which applies equally to vastly different types of HRT. I doubt that three months is based on anything scientific, more that it's easy to remember if it's always the same!

Hormones can make anyone's life hell, your doctor has the ability to give you something that will help you, don't lose hope because she hasn't managed to do her job successfully yet, most doctors love to hear they've helped, they just need a nudge to get going.
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sheila99

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Re: Getting worse not better
« Reply #7 on: November 19, 2023, 04:26:46 PM »

You can ask for a referral to an NHS meno clinic though there's usually a long wait. ADs shouldn't replace hrt but in you situation they could help you feel better while you figure out the hrt. Some people are very sensitive to increases so you may need to increase slowly. Adding an extra part pump every day would be better than a whole pump every 3 days as it will prevent peaks and troughs. It's only estradot 100 that's out of stock. You could get a 75mcg patch and cut a piece off to give you a bit less to start with. 2 pumps gel should be equivalent to a 50 patch but of course you may absorb differently. How low was your level?
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Kelrob12

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Re: Getting worse not better
« Reply #8 on: November 19, 2023, 05:00:24 PM »

Surgical menopause following cancer treatment last year. Was ok for a while on Evorel 50 but then they stopped working (extreme fatigue, aches, depression, detachment- felt like a 90 yr old zombie). Upping the patch dose made no difference so the doctor put me onto oestrogel. 

It blew away my brain fog but left me with horrible anxiety, palpitations, tight chest, uncontrollable crying jags. It's been nearly 2 months now without improvement. I can't work. I can't do anything except cry or stare at the wall. I feel so shit and I can't imagine ever feeling better. I just want to end things.

Hi,
im sorry your going thru this. Echo what the others has said - antidepressants could be a solution. Im surgical menopause too. Im 5 years in. I cant say I feel like Ive got it all sorted but Im way better. I felt bad the first couple of years so Id say time can really help. For me getting my levels tested really helped (I know its not routine and symptoms is how they normally decide). But For me knowing how I absorbed and knowing I wanted my levels above 300 helped. Once I knew what patch did this I was just patient and gave it a good few months of a regular dose. I also do a journal so I knew what symptoms happen when. I chopped and changed a few times and I think this made things worse.
xx
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CLKD

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Re: Getting worse not better
« Reply #9 on: November 19, 2023, 06:25:40 PM »

Your GP isn't able to prescribe testosterone, so he/she should be referring U to a dedicated menopause clinic for proper advice.  Once you have been assessed and given advice, the Clinic can let your GP know if testosterone is apporprirate. 
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WildOtter

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Re: Getting worse not better
« Reply #10 on: November 19, 2023, 07:49:48 PM »

My levels are nowhere near 300, I think they were 110... on patches, it was around 80. 

Thank you for your support and kind words
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Kelrob12

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Re: Getting worse not better
« Reply #11 on: November 19, 2023, 08:24:52 PM »

My levels are nowhere near 300, I think they were 110... on patches, it was around 80. 

Thank you for your support and kind words

For me personally evorel isn’t good. I started on estraderm (was fine but they big!) and now estradot. I’m also on 100mg. I’m now 44 . My levels on a 100 are around 400. X
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Nas

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Re: Getting worse not better
« Reply #12 on: November 19, 2023, 08:29:58 PM »

Kelrob,
Do you manage to get Estradot okay where you are? X
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Kelrob12

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Re: Getting worse not better
« Reply #13 on: November 19, 2023, 08:34:43 PM »

Kelrob,
Do you manage to get Estradot okay where you are? X

Hey no I’ve ran out! Gutted. I’m bury(north west Uk). Can’t get them anywhere. Even online no stock. I’ve an evorel on the past few weeks and just don’t feel right. I have an old estraderm I’m going to try tonight and see how I feel. It’s like a bag on my bum tho 🤣 x
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Nas

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Re: Getting worse not better
« Reply #14 on: November 20, 2023, 04:35:59 PM »

Yes, north west here too and struggling to find a continuous supply of Estradot. I desperately want to swap my evorel prescription to Estradot, but darent, in case I end up in a pickle! 🙈🙈 x
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