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[brandydog1]

Hello,
I'm wondering if any fellow members might be able to help?

I had a hysterectomy and oophorectomy about 3 years ago aged 38,  following severe endometriosis and PCOS.

Treatment History
Started on estrodot patches
Added testosterone gel (1 small blob per day)
Switched to Evorel patches due to severe skin irritation from estrodot but this made me feel very anxious, bloated and sluggish.
Then tried elleste solo but had a lot of severe joint pains and dizziness.

Current Treatment

Premarin 1.25 plus estrogel 2 pumps and testogel (1 small blob) for the last year and a half. (recommended from a menopause clinic).

I don't have too many side effects from this HRT regime other than mild anxiety, and I still get some hot flashes but it doesn't feel like its actually doing anything! Nothing I've tried so far seems to address the overwhelming fatigue and complete loss of libido that happened within about 6 months of my hysterectomy.

My Dr's not very helpful and the waiting list for the menopause clinic is quite long. I did ask about Tibolone but the consultant said that its affects were quite mild and wouldn't be any good for me.

I have a Drs appointment soon and wonder if anyone can offer any advice or suggest a way I could change or tweak the HRT at all primarily for Energy / Libido as I'm really tired of feeling like such an old lady 
I eat healthily, normal weight, and all blood tests for iron, thyroid etc have come back normal.

I've never posted before but have found the forum really helpful when researching and I don't know if I actually have any treatment options left or, or if I have to accept the changes, or if I would be better to stop the HRT altogether.

Any advice would be much appreciated 
 

[Lou44]

Hi I'm in a similar boat. Tried all sorts and after 20 months of trying implants, still not getting consistency. Back on Premarin 0.625 and trialling Tostran gel but early days.

Do you find testosterone works at all with Premarin? I'm considering trying Estrogel but in the rare good days, I always felt better on Premarin than estradiol.

Are your symptoms better than they were? Would you consider Utrogestan for anxiety?

[Lou44]

Also do you think too much oestrogen may be the cause of loss of libido? Really interesting that you were recommended Premarin and gel together.

[brandydog1]

Hi
Thank you so much for your suggestions.

Its strange because i'd never considered the possibility of too much oestrogen or heard about testosterone gel not working with oral oestrogen (I had a quick look back through some of your other posts), and thinking about it the only times when I seem to have anything like normal energy is after a few days of running out or forgetting to use HRT so maybe too much really doesn't agree with me.

Directly after my hysterectomy I was put on 50 estrodot and testogel and felt normal for awhile (this could have been because I still had some of my own hormones left). but I had problems with skin irritation when I was moved up to estrodot 100 and never thought about going back down to estrodot 50 as I thought more E would be better.

Premarin seemed to suit me better (not so achey, less bloated, less flushes, possibly slightly more energy) but did nothing for libido, despite using testogel daily.

The consultant I saw at a menopause clinic seemed to be of the opinion that more estrogen is better and gave me oestrogel as well as Premarin 1.25mg and I've sort of dabbled adding oestrogel when I remember or together with testogel and I think I have had the best results when I've used all three together (libido wise, not energy) so it might be that it doesnt work well with Premarin.

I've been to the Drs this morning and I'm going to give Tibolone a try, and if this doesn't work I might then try low dose estrogen and testosterone.

It was really nice to hear from someone in a similar position as I've never spoken to anyone about HRT before.
I hope you get some good results, and it would definitely be worth you trying adding oestrogel to the mix to see if it helps the tostran with Premarin.  Good Luck I wish all this wasn't such trial and error! 

[Tc]

Hiya brandy.
I have been wondering for a while whether oopherectomy makes it more difficult to get hormones right.
I had BSO in August last year. I first used femseven sequi 50 but it wasnt high enough and before I could up the doze it went out of manufacturer. Shame as I got on with the progesterone in it. I was put on eastrogel and utrogestan. I got right up to 6 pumps and it was as though I wasnt taking anything. My blood levels E  was so low.
So i was changed to estradot 100 then put up to 150. I've been using 200 although the doc doesnt know that and my eastrogen level actually FELL on that high dosei!! I'm not getting on with utrogestan either, it makes me more depressed and tired. I added testogel every day 2/3 months ago and have noticed no improvement whatsoever from it.

My gynae said the pill was an option but I would have to top up with eastrogel which Iis in line with what you've been told but  i dont absorb. The gel. Plus I'm overweight smoker so there is a thrombosis risk!! So she has referred me for the implant  at meno clinic. I'd be interested to hear more about your experience with the implant LOU44.

I was told I "dont fit into the box" and that "9 out of 10 ladies find results from either patches or gel". . Maybe the removal of the ovaries is the thing that puts us "outside the box". Mt gynae just doesnt know what to do next.

I'm now using 2 and a half 100 patches. Havent used utrogestan for 3 weeks and my blood eastrogen is still realy low. I havent had a withdrawal bleed since my op despite using sequi first of all and stopping utrogestan for weeks at a time. I honestly feel like I could cover myself head to toe in the patches and it would still make no difference.

I am now 54. Before I had my op I had no symptoms whatsoever and regular periods. It's like every single symptom on the list hit overnight and nothing seems to help at all.

As for libido. I dont understand the testosterone thing. My bloods showed my T was higher end of normal but I've had no results..

The problem is nobody does a blood test before the op so we dont know what is "normal" for us as an individual. I also think they shouldnt be so cautious and give such a low dose after the op initially as the drop is severe and during that first few months on such a low dose it leads to "bottoming out" of eastrogen which I know personally was what made things worse and maybe has made it harder to climb the hill back up. What do you think,
Xx

[brandydog1]

Hi Tc,

The consultant I saw did say an oopherectomy can make it more difficult due to the abrupt halt to all hormones but I thought that if i just used enough estrogen that it would bring me up to something close to normal!

Aside from the endometriosis pain which was the reason for my hysterectomy, like you, at 38 I had no menopause symptoms and it was a real shock, and frustrating not being able to find a treatment that works continually.

I'm realistic and not after miracles but I feel so different (terrible fatigue and libido missing) that i'm starting to feel desperate.

I tried utrogestan for a few months but like you it made me quite depressed and tired. 

And i've also tinkered with the HRT trying double patches or lots of gel but nothing has seemed to make much of a difference so far.

I've only ever had blood test once and despite the HRT they were all quite low, except for the testosterone (but having had PCOS I don't know if this made a difference). I'd also be interested to hear how the implant works

I'm starting Tibolone today and just hoping that as i've not had much success so far that this might work for me.

I hope the meno clinic can give you some good advice, as it does seem like your using a lot with no results

"I honestly feel like I could cover myself head to toe in the patches and it would still make no difference" Same, did make me laugh 

[Tc]

Brandy thanks for the good wishes.

I must admit I wasnt prepared. I thought I could just stick on a hormone patch and it would make up for the loss of ovaries!!

You are much younger than me so it is important for you to protect bone health so I do hope you find something that works for you.

I'm awaiting my appointment. It's at Chelsea and Westminster panay clinic. They offer implants to ladies who struggle to absorb.transdermally.

I have a friend who has pcos and it causes her testosterone to be high. After ovary removal testosterone plummets and you may have fallen from a higher level. I think if one is not post menopause it stands to reason we are falling from a greater height in terms of all the ovarian hormones.

May I ask why you were taking utrogestan. I didnt think it was necessary if you dont have uterus?

[brandydog1]

Hi Tc,

I tried the Utrogestan as I read somewhere (can't remember where!) that even though not necessary it might help 'balance' things, but it didn't work for me at all.

It would be great if you are able to post in the future how you get on with the implant, hopefully well 

[brandydog1]

Hi Birdy,
Thank you, I'm really sooo confused by it all!

When I went to the meno clinic I'd been taking what I thought was quite a high dose of estrogen.
Elleste Solo 2mg plus between 2-4 pumps of estrogel
and testogel 1 small blob per day

The consultant said the same as you, if I was feeling rubbish that I needed more estrogen. But even when i'm applying loads I've never really felt any better and have had lots of symptoms that I thought were possibly from too much estrogen (sore boobs, bloating, tearful).

The results at the time were:
Plasma FSH level 21.4 iu/L
Plasma LH level 7.7 iu/L
Plasma oestradiol level 279 pmol/L
Plasma testosterone level 1.6 nmol/L [0.35 - 2.6]
Serum sex hormone binding globulin level 9 nmol/L [30.0 - 90.0]
Free Androgen Index 17.8 % [0.6 - 6.1]

Is 279 a very low estrogen level? I had PCOS and endometriosis before so I don't know if that messes up how I absorb HRT or the balance between things. 

[CLKD]

Do U have a local Pharmacist?  Most of private rooms these days so may be able to talk you through your results, or ask for a referral to a Menopause Clinic - not a Gynaecologist who often don't know anything different to GPs. 

Some ladies find that keeping a mood/food/syptom diary useful - maybe decide which symptom you would like to ease and work towards that 1.  Have a read round, make notes 

[brandydog1]

Thank you for your reply CKLD
I have been to a meno clinic but I didn't find it that great, long wait, 5 min appointment, and only advice was to take more estrogen gel.
Symptom wise I'm not overly worried about hot flushes, its the general sense of fatigue / oldness / loss of libido that has really changed since my op and I can't seem to fix.
Keeping a diary might be good as I've had good and bad days so it might help me work out what works for me.
Thank you

[CLKD]

 

Were you offered a follow-up appt. after that advice  .  It seems that Drs give suggestions but have little interest in finding out if it works!  What happened to being supportive 

[brandydog1]

lol thank you
And no, no follow up. I could probably go back but it was a bit pointless. I have learnt more by reading info on this site and then going armed to my not very interested GP with print outs.

[Lou44]

Hi Brandy dog and TC

This thread is old but just wondering how you're getting on and what you're both now using?

I'm 7 years post hysterectomy and BSO and still struggling.  Have used every HRT and combination and still feel rubbush.

Currently doing Oestrogel,  Utrogestan and Tostran.  Zero energy,  dry,  no libido, cache everywhere. Diagnosed with fibromyalgia and ME but all started with ovaries being removed.

At my wits end.  Might try adding a bit of Premarin as think it's the best of a bad bunch.

Hoping you've found the answers!

[Gnatty]

Hi Lou, I am one year post hysterectomy and BSO. What works for me is taking in a good amount of testosterone. So at the moment I take 3.5 pumps of oestrogel and I make a tube of testim last me just seven days. I think that was the real game changer, going from the tube lasting me 10 days down to 7. This makes me feel more like myself, stronger mentally much less scared, better energy and a more positive outlook. It makes my skin less dry too. If it were me I would get your testosterone and free androgen index measured to see if you have scope to increase the dose. I was on a low dose antidepressant called Mirtazapine but no longer take it and again that has helped my feeling more alert in the mornings. I don't take progesterone though. Do you take it because of endometriosis or does it just help you feel better? Some feel better on it and some don't!