(sort of) surgical menopause- positive stories only! can't handle negative at the moment

[menowoes]

hello,

it's a long one (and a bit repetitious!)

I'm looking for advice and camaraderie as feeling very sorry for myself!
I'm particularly interested in info on oestradiol tablets or the oestradiol implant and am also VERY happy to hear positive stories from women without ovaries whatever you tried!
Just to reiterate that last line- I'm actually terrified by how I feel and the prospect of the future and more than anything need to hear good news stories
I'm 51 and had my ovaries and womb removed nov 2020. I was menopausal anyway (one or two years post), hence the "sort of" in my title, and on 4 pumps oestrogel- I had the hysterectomy due to prog intolerance and the ovaries removed because "might as well", according to doc.
So strictly speaking not a surgical meno as supposedly already in it, but i feel that it might have had an impact!! felt awful about 2 months or so later. Maybe that would have happened anyway, even without surgery- maybe further into menopause would have been difficult so i cant 100 per cent it was the surgery as i think i forget how i was prior to it anyway- everything is so messy and foggy! certainly menopausal women with ovaries have similar issues but the fact that i dont have them means i might experience things slightly differently to them. anyway, 2 months later could no longer tolerate 4 pumps oestrogel- have been on merry-go-round of patches/gel since- but not higher doses as these impossible. so even baseline small doses make me feel bad: 1 pump oestrogel or 25mcg patch, or half that! i give them time to bed in but feel crap.
and the smallest increases make me feel dreadful- dark mood, palpitations etc. and as i say i cant tolerate even the smallest baseline amounts of patches/gels
even the slightly woo preparations of progesterone cream and estriol cream (biovea etc) left me reeling. even vaginal estriol (ovestin)
so i thought maybe i dont need anything and have been off the woo stuff for about a week and 25mcg patches i've been off for a couple of weeks and today feel horrible, dark mood, foggy, lethargy etc
what I do notice is that whenever i come off a patch or whatever, (usually as a temporary measure with a view to restarting/recalibrating), there's a sweet spot where i feel ok- so my estradiol levels are prob very low at that point but good for me- but i appear to have gone past that now and dont know how to get there.
it probably looks as though i'm changing every few days but actually i'm usually very cautious and give changes weeks and months to bed in- it's all so exhausting.
i've tried testosterone but- as with oestrogen i'm exceptionally sensitive and felt dreadful quickly on much smaller than recommended amount for women- I achieved low man levels!- and not in a good way- no libido, very anxious. nevertheless i gave it 3 miserable months before quitting!
my shbg isnt great- hovers around 40- and was 20 odd on testosterone- and i think this may be key at least to the testosterone sensitivity. I've deliberately lost weight- was couple stone overweight- but doesnt seem to have had much impact- a bit i guess. i have over 3 decades of poor diet/sedentary lifestyle to undo so maybe it'll take time. am trying to exercise too- not possible today.
I'm off to GP today to ask about oestradiol tablets- just to try a different method of administration. i've also read that they can raise shbg which might be good for me. i only know of elleste solo - dont know if these are bioidentical- as to be honest not even convinced that matters with me!! i dont want to take much- wonder if i can halve them? can i take alternate days maybe?
thank you anyone who's read through this- obviously lots of questions and nothing specific at the same time. i'm really happy to hear any experiences (good ones!) I just needed to post and vent!

Have you seen a consultant who can help you? This sounds too complex for a GP.

Your experience sounds quite unusual, as from what I've read online and on forums, most women do seem to settle down with HRT in some form.

It's odd how you are reacting to estrogen as you are, when you were 'only' intolerant of progesterone.

thank you for responding. yes, i've done the rounds of private docs! to be honest with you I do feel a bit better than I did this morning. Plus I've been to the GP and got some tablet HRT ordered. it's possible I don't react well with the trans-dermals so I'm hoping this might work. thanks again for wading through my post :)

It sounds to me as if you'd be better off mentally by stopping the HRT completely. DM had a nightmarish menopause, with surgical hysterectomy and ovaries removed towards the end of it. She then stayed on HRT for a long time, well into her mid-60s. When she finally stopped she said after a few months of joint pain that she felt mentally better and clearer than in years, and her mood was better than it had been since childhood. Some brains don't react well to any change in hormone levels and it is difficult to dose any hormone (even after a surgical menopause) in a way that keeps the level completely constant.

thanks hopsalong-
that is huge food for thought
can I just clarify something? do you know roughly what age your mum had her hysterectomy and then what age her ovary removal? were they at the same time? sorry I'm being a bit thick!! ie when you say, towards the end of meno, do you mean mid-sixties for ovaries out?
certainly I do feel better off it initially but then start to deteriorate mood-wise, fatigue- but if I'm honest, it's probably not as bleak as I feel on hrt!
And maybe if I left it long enough it would rectify- but I panic and recommence hrt!!
It really helps to know that your mum had a life after it all

The main concerns are your bone and heart health. With no periods from 48(?) that is now considered on the younger side - average age is 51.

So you had a hysterectomy because of being intolerant to the progesterone in HRT? That must have been done privately I assume.

Looking at your medical history- poor diet, no exercise - you must have had a DEXA scan for your bones? If not you should insist and have it as you have risk factors for osteoporosis- poor diet, sedentary, loss of ovarian function before 50, etc.

Can you arrange this?
Either see your GP or refer yourself privately maybe through the dr who did your surgery?

If I were you I'd start gel at about half a pump a day and see how that feels. It's unusual to get such bad side effects as it's just replacing what you had all your life till menopause.
But definitely look into bone density first.

Have you had your thyroid levels checked, some of your symptoms are also caused by hypothyroidism and there is also a relationship between thyroxine and oestrogen etc

Oh and iron, ferritin, B12, D and Magnesium levels too. The medical adage is if your hear hooves, look for horses not zebras, but it sounds like all the doctors are doing is looking for horses and need to start thinking about zebras iyswim

@JinglingSpringbells thanks so much for helpful reply.

ok, heart health luckily is ok- think i might have pulled back a bit of good health with my new zeal for fitness and nutrition (well, zealous for me anyway!!) over the last few months. I had asked gp for baseline checks for fatigue- i stipulated thyroid/ferritin etc anyway they gave me cardiovascular instead but thats obvs worthwhile. my cholesterol is on the higher side of ok- didnt worry docs but I'm def wanting to better it. hb1ac- also fine and whatever else they did.
Yes meno around 48-think periods stopped around 47. I think a dexa scan is an excellent idea- I expect if I press GP they'll agree to it- they're not proactive but tend to be amenable to things if I bang on enough! it's just so bloody exhausting. but I have a hip pain so bone scan good as you say.
I'm going to add some resistance band/free weight training to my at-home exercise regime- I have the equipent gatherng dust at the moment but really feel exercise- carefully done- is a huge part of the way to go for me.
I was on NHS list for the surgery but did indeed go private as covid hit and my op obvs became even less of a priority. it was for prog intolerance- unfortunately doc suggested ovaries to go as well- i try not to dwell to much on the fact that not necessary and i think i forget how crap i was feeling anyway even prior to the operation. even if surgical "meno" made me feel worse it's made me do something about my lifestyle- i'm trying to be philosophical, but it's hard.
I've actually started eleste 1mg which I think is broadly the same as estrogel 1 pump- possibly a little gentler as it builds up in system. I just wanted to try somehing that didnt go on my skin for a change. I'm no longer overweight so doc happy to prescribe tablet. it's only day 3 and am def getting the negative symptoms- pockets of low mood etc but will persevere as I know from experience this needs to bed in over weeks, perhaps months without my interfering with regime!!
why I'm so sensitve to it all- I don't know- as you say, I'm only replacing that which I had!

@SeaToSki Thank you for your reply.
Well, I ended up paying privately for various baeline tests as GP messed up and I'm just fed up with them! Nice though they are.
thankfully, thyroid is fine- yay!- I was quite worried about that. also ferritin, b12, even liver function all good. D insuffucient so have been addressing last couple of months- the only "zebra" left is magnesium which I haven't had checked and it has appeared on my radar quite a lot so I think I need to get this done.
Just thought, the other thing I've had checked privately is SHBG and this is perenially low for me and should be rectifiable over time with exercise and possibly a bit of oestrogen. something to do with it controlling sex hormones and if it's high or low it might be affecting my ability to tolerate them, perhaps?? These are my own theories!

I've actually started eleste 1mg which I think is broadly the same as estrogel 1 pump- possibly a little gentler as it builds up in system.

No it's not.

1 pump of gel is 0.75mgs estrogen.

If you pump out half of that (approx) or a whole pump and discard half, you can get it down to around 0.35mgs, so 1/3rd of the tablet you are on.

I started on half a pump at 53, as suggested by my specialist and only increased it after a couple of weeks to 1 pump, then to 2 some weeks later.

When you say your thyroid was normal, what exactly was your TSH, and T3, T4 and free T3 and T4? Did they also test for antibodies? The range for normal for thyroid function is huge, so technically you can be normal for the population but still way off what would be normal for you and therefore you are symptomatic.

I had hysterectomy and oophrectomy at 38 and went straight on tibolone. Never had or tried anything else. No problems on them. Might be worth reading up and trying them?

I'm sorry I disappeared! I couldn't face the thread- was feeling a bit irrational. I now have a plan and feel optimistic about it.

@JinglingSpringbells Thank you for the post. Oh my goodness, you're absolutely right of course- the elleste 1mg was a frickin nightmare and definitely a higher equivalent dose than 1 pump gel!! I lasted 3 days. beware internet searches, eh? I'm now on half a 25mcg patch which, dare I say, I think is broadly similar to your half pump estrogel. It's only day two- I feel wired but will be sticking with it. I definitely need some oestrogen- feel flat without and knuckles, knees and even toes have started to hurt. I want to get up to 25mcg, then possibly testosterone or poss more oestrogen but I'm going extremely slowly- it's the only way for me.

@SeaToSki Again, thanks for the helpful post. That's a very good point re thyroid- I'll have a look- I may repost the results if there's a lot of room for error. I remember when I felt like crap when my ferritin was low- but it wasn't treated initially as it was about 1 or 2 units above the absolute minimum, so not picked up by GP. Luckily- after time- I realised and once I'd pushed for iron tablets I felt a whole lot better!

@Daimyum Can I just say, this is a fantastic post for me to read- thank you. First, it's always good to have another possible hrt in my armoury but most of all it's SO GOOD to know that there's someone out there who feels ok post surgical meno. In my bleakest moments I feel so hopeless for having it done- but, rationally I do know there are women who are fine years post op (one of the docs at the newson clinic, for example- or so I'm told by a former patient!) and I'm very aware that there are plenty of women who still have ovaries and are struggling with meno- it's clearly not an exclusively surgical thing! I think it's just brought things to a head more quickly for me but I'm really trying- I'm exercising, I've lost weight, I feel very determined- maybe I can see it all as a bit of a wake up call to get off my arse and be healthy. I'm rambling now! But really appreciate your post :)

You sound as if you have tried so much ! You sound like you need one specialist doctor with a clear plan for you as opposed to using your GP. I went through menopause early 50s , started on HRT and then had to have a total hysterectomy at 59 due to a large fibroid. I went into THE worst surgical menopause afterwards ( I was told that even if you have ovaries after menopause they still give out a small bit of oestrogen) so went immediately onto Oestrogel. I am still on it 6 years later and intend to continue. I feel and look great on it.

oh @NormaTheWife I'm sorry I didn't check back on this thread sooner! I was a bit afraid as feeling so fragile. But, thank you soooo much- wonderful for me to know that someone in a very similar position is feeling excellent! And I just knew that I'd experienced a sort of second menopause after surgery, I didn't imagine it. It's hard to be reconciled with it sometimes because I could have kept my ovaries, but, to hear that you're doing well gladdens my heart :) And thank you for the advice too. Can I ask how much oestrogel you're on?

@menowoes I am on 3 pumps of Oestrogel a day but it does vary from person to person. You know when it's the right dose. My private doc said you know you need to stop when your nipples hurt 😂

thanks @NormaTheWife I will bear that in mind😁