I'm struggling. I had my op almost exactly a year ago and chemo finished in June. Scan showed NED, but was soooo tired (and bloated, with pelvic pains that have now stopped) that come October I was given another scan, NED again.
However, I am so tired I cannot function. I feel like I have a delayed menopause. My GP has said maybe my body took a while to catch up with itself, but has anybody else had this? feeling so awful this long afterwards??
I have been working full time (from home) since 2 weeks after chemo ended in June and have been just about managing but my exercise has gone down the pan. I was walking 2 miles a day for the first half of chemo Jan to March, 6 miles on the weekend. (half way thru chemo at Easter I fell ill and that stopped) But I did regravel part of my garden in July, driving and getting the gravel bags myself and unloading from the car etc on my own. I managed 4 days camping (hard but doable) driving 3 hours each way in August. Now I can barely get myself dressed in the morning. I can't walk more than 10 minutes, I can't even countenance more. Nothing helps - sleep, supplements (all the Vits, Lions Mane, Ginseng, Soy Lethicin, Magnesky etc), nothing. I can sleep 3 hours or 8 and I feel EXACTLY the same. I have barely any social life and wont' drive more than 15 minutes distance as I don't feel safe to concentrate for any longer.
I have convinced myself that they must have missed something on the scans, because how can I feel this bad? I had 'kidney' pain last week (probably back ache looking back on it) and ended up in A and E after a call to 111 as I have this kidney red flag due to having hydronephrosis but the hospital doctor said I wasn't retaining too much wee [they measured it with an ultrasound thingy] and she was confused as to why I was feeling so ill as my bloods were OK and I had no wee infection.
I may or may not have a stent put in to deal with the swollen kidney/ureter. To be discussed in a few weeks. Kidney scan shows no kidney stones and kidneys are functioning normally - the urologist is stumped as to why this has occurred.
Has anyone else had some kind of delayed reaction to the surgical menopause? I am so frightened.
I can go on low dose oestrogen but appiontment is 2 weeks away. Did anyone lucky enough to have low dose oestrogen magically get their energy back? I need some hope here.
Thanks
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Emcee71
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So sorry you are feeling so exhausted and hopeless- i know these feelings. My exhaustion did not subside till starting estrogen (+ progesterone for half the month), testosterone cream and levothyroxine (apparently, a previously normal thyroid went hypothyroid following the treatment we’ve been through). So, once you replenish your hormones, you will feel better. Try to work on the hormones, if possible, in your case. There is hope for improvement with the HRT. Wishing you the very best!
Thank you so much for replying, I'm sorry you had this too but hearing that hormones helped you with it has lifted my spirits, thank you. I know we are all different but this gives me so much hope. I am actually having the 'extra' thyroid tests. The standard one came back on the edge of normal range but I asked for further tests as I have a goitre.. though even without that I did know that the thyroid can be thrown off kilter. It may have been you who raised this possibility a while back. xx
Thanks Nordic, but… it’s unsettled in the scientific literature if women w a history of endometriosis should add progesterone to their HRT. Some studies/ recs say it’s safer to do so in order to prevent unopposed estrogen from possibly (emphasis on possibly) reactivating any endometriosis cells (no one wants to reactivate endo if they can help it, although science doesn’t even know if HRT reactivates endo or it would have reactivated itself anyway from the estrogen that’s released already by fat tissue and the propensity of endo to make its own estrogen). So, yes, non-endometriosis women don’t need the progesterone, but endometriosis patients might be (emphasis on might be) safer w added progesterone. Thanks for your comment! Hope you’re well!
Re @Emcee71 post, I’m pleased I’m not the only one totally fatigued! I’m 2yrs NED and could still sleep the clock around some days. Bloods look good all that time so not anemic. I’m on Levothyroxine as my thyroid went hypo, sertraline too, not depressed. I have to plan my week if I want to do anything special. A day ‘ladies who lunch’ or having visitors leaves me sleeping for 1-2 days! I was diagnosed with chronic fatigue 20 yrs ago and it took about 5 yrs to get back to normal life so onc and gp just put it down to cancer /chronic fatigue recurrence. It’s a case of moderation in everything, don’t push yourself to the limit, and don’t feel guilty for self care. Easier said than done😄 I hope you have more good days than bad, enjoy every moment you can. 😘
Thanks. Oh that's hard. Mine isn't solved by sleep. I can sleep 3 or 8 hours, and zero difference. Bad tinnitus, fast heart rate, can't relax properly. Yet so tired. Something is definitely "off". My money is on thyroid, possibly auto immune disease linked. I bruise very easily, bled all over the place when bloods were taken, so odd. I have a goitre. I'll get there! You too take care X
Firstly I’m soo sorry you are feeling this way it must be really awful for you. 😫
Looking at what you have written, it jumps out at me that you have really overdone things, compared to what I did during/after treatment.
For example you say about walking 2 miles every day during first half of treatment? I did about 15 minutes and was pleased at that.
As for gravelling a pathway, I still don’t lift anything heavy now as my consultant stressed the possibility of a hernia on me not just after op but forever.
I’m about 18 months ahead on this journey than you but I can still remember how I felt and it was tired and weak. I did little bursts then rested and gradually over the months that followed I felt stronger and less tired.
Add to that you went back to working full time 2 weeks after chemo finished(which I understand you needed to) it’s a lot.
I also cut back on my driving because of concentration and even changed my TV viewing as I found it difficult to concentrate on things too intense.
I’m waiting to see a menopause specialist as my hot sweats are ‘crazy’. I’ve been told I cannot have HRT. I pushed as my tumour was ER negative so it went to MDT. I was then told that recurring Clear cell OC can mutate and switch to ER positive so they wouldn’t want to be feeding a future recurrence 🤷🏻♀️.
I’m glad all of your tests have come back okay so far and of course if you feel something isn’t right you should get it looked at, but I just wanted to give some perspective of how I felt at that time post chemo.
Thank you Jen. I'm sure you're right. I think the walking was recommended to flush out the toxins from your system between treatments. But working, yes, totally not recommended. My GP said the other day that if I worked at Barclays he'd have signed me off for a month! That is SO interesting about Clear Cell and oestrogen. I am going to research that and query it too, and I guess I can weigh up the odds. But I have to say, the way I feel now, I'd rather live with an increased risk than not live at all, and/or give up my home and "exist" on benefits. It's so useful though, to know how you felt. I do hope your hot sweats can get better. Coffee and wine are triggers for me but I am lucky that that is pretty much it (and sweaty face in the night) xx I suppose you've tried things like black cohosh? etc xx
I saw my consultant last week and told her I’d been taking evening primrose oil and it had helped take ‘the edge off’. She immediately told me to stop taking it as she couldn’t guarantee it would be safe as EPO mimics estrogen (probably why it’s helped). She told me she wouldn’t advise me taking any OTC medication 🤷🏻♀️
My team are very ‘anti’ hrt in my circumstances plus I was 60 last month so another reason they don’t want me to have it.
Everyone has tried to get me to take the anti depressant meds for the hot sweats but after trying for a couple of weeks and no joy apart from feeling ‘weird’ I refuse this route now.
There is a new drug (private prescription only) that works purely for hot sweats that is for people unable to have hrt. This is what I am waiting to be prescribed by the menopause specialist. My consultant told me I’d be able to have it on the nhs as I’d be in the ‘special’ cohort that there is leeway to prescribe for. The appointment cannot come soon enough 🤦🏼♀️. I guess I’m lucky as that is my main symptom but do feel a bit aggrieved as I had already gone through the menopause with all its joys come out the other side for 2 years and then the cancer happened and it all started again 😫
I hope you start to feel more like you soon but remember chemo is a b***h and it takes a lot to get not only ‘through’ it but also ‘over’ it
And apparently, aside from Veozah, there is a drug Ospemifene (brand name Osphena) used to treat moderate to severe vaginal dryness and painful intercourse caused by menopause. A new drug for those not into taking the “tried and true” HRT. I don’t know anyone’s experience w these 2 new drugs but would love to hear…
I’ll post on here when I finally get to try it! HRT worked overnight for me in 2018 I only needed it for less than 2 years a true miracle drug for me….
Hi There,I just wanted to add my Mum recently got diagnosed with thyroid problems out of the blue. She went from pretty fit to feeling awful. Was struggling to even put her shopping away. She was like a different person. We thought she might have OC because she had alot of the symptoms. She doesn't and I was surprised thyroid issues could cause that level of exhaustion. So good that you're getting extra thyroid tests to rule it out.
I did some active things like you when I felt well during chemo, don't think it did any harm. I was always the diy queen of the house and felt a few jobs like that made me feel more normal. I'm 45 thou and feel I can over-ride side effects at times to get things done with sheer will power, then rest for next day.
I don't work full time though so maybe that has built up for you. I can totally see why work is important to you though. Maybe if at all possible a few weeks complete rest to replenish your reserves?
Thank you. That's so useful to know about your Mum. I had 2 weeks off in Sep and will have 2 weeks off in Dec and have refused to commit to virtually anything during that time. It's so hard, my friends and family just don't understand ... but I exacerbate the issue because I am working!
Yes, having minimal plans can really help with rest. Also you'll prob end up doing some spontaneous things you really enjoy when you feel more rested.I really admire you working full time. I have a partner to help so taken my foot of the pedal for a while but hope to do more going forward. I don't know how stressful your work is but I do miss the focus of it sometimes.
My Mum is certainly back to her old mischievous self🤣 I'm sure you'll be back on form soon once you figure out the cause x
Did your Mom take any thyroid hormone to get back to her mischievous self? I’d love my old 20lb lighter mischievous self … I don’t know if any of you ladies gained weight after treatment…
I am into my 11th year of all this and 6 since my last recurrence. I still get bouts of exhaustion lasting a few days at a time i say my batteries have been removed. At the same time my bowels and sleep go off too. Nothing helps just waiting it out. However i was low in vitamin b12 when i first finished treatment and a course of injections helped that i am also low in vitamin D and prescribed high dose replacement has definitely helped. So just wondering if they did the b12 and vitamin D bloods?
The other thing which affects my energy is my mood which dips sometimes. I found it particularly difficult when i finished all my treatment, its like being set adrift in a boat 🙈 xx just something else to consider, counselling really helped me, and 90%of the time i am very energetic, i was 60 this year and still walk every day over the moors with my dog and look after my grandchildren most days. Hope you get some answers x just thought i would share my experiences
Thank you Diane. I also feel adrift. It's so lonely, the post chemo time isn't it. My friends and most of my family have stopped calling and texting. To them, I am 'cancer free' and I've had 'the all clear'. I know I'm not alone in this. While we live with, as someone on here said, 'the sword of damacles' and suffer the physical effects of surgery, chemo and the surgical menopause. I do know that feeling like I've been hit over the head (almost like, slightly concussed??) and have those stars around my head like in the cartoons, every waking moment, isn't mood-related. I get down *because* I feel like that, not the other way around. I am so glad you've regained your energy mostly, it gives me hope. I'll eat my hat if this isn't thyroid related. I hope it is, because then there may be a medicine to help. But maybe it is just the chemo and the menopause and me working, thus making my recovery longer. However it is odd that the way I feel has really set in around 8/9 months after surgery. Thank you for sharing your experience!x
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Terrified 
Totally Gutted!!
A bit anxious 
It's back :(
