Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: yriches65 on July 07, 2017, 08:29:38 PM
-
Hi All,
I am new to the forum :) but not new to menopause and problems with HRT :'(
A brief history....
Had a full hysterectomy 12 years ago at the age of 39, both ovaries removed as well.... was put on HRT at the time being estrogen patch cannot remember which one or dosage...wasn't too bad to start with then over the 3 year got worse with funny turns... saw the GP's and Endo's blood samples came back normal... GP's clueless....so ditched the HRT and went cold turkey....was ok until last year at the age of 51...
Had a battle with a UTI with getting the GP's to confirm, but finally they did... but after causing myself to suffer with anxiety, depression, insomnia and struggling to cope.
Saw a private GP who ran 24hr cortisol tests where they came back with high cortisol and low DHEA , so was diagnosed with early stages of Adrenal Fatigue and prescribed DHEA.
The done some sex hormone saliva tests.... found estrogen was low, testosterone was none existent, and progesterone was in the floor....was prescribed 2.5mg Bi-Est, 100 mg Progesterone trouch and 5 mg of testosterone.(bio-identical)... i thought this would be answer
After 5 weeks of taking the prescription was feeling worse ref anxiety, depression, sweats, flushes , wretching etc... all their response was to take some tranqs whilst the hormones go into my system.
Sought a second opinion from a hormone specialist.... did range of saliva tests and found all levels were off the scale...
Was immediately put on a detox from the hormones for 6 weeks..
After the detox was prescribed Estriol cream and progesterone cream... over the 5 months tried all levels of dosage but couldn't get it right, suffered with depression, anxiety, flushes etc....but also new symptoms ..tics, pressure on head , acne , jaw ache, dizzy head, tingling feer... list is endless.
Didn't feel like i was getting anywhere.... saw Carol Vorderman on Lorraine....so sought another opinion
Now with a 3rd GP, have been put on the Prof Studd regime of Estrogel and Testosterone gel (testim).... no progesterone due to the hysterectomy told i don't need it
Currently on 2 pumps of Estrogel per day...have been on this for 1 month
On 5 mg of Testim (testosterone gel) for 2 weeks...
As soon as started the Estrogel had problems 'downstairs' with Thrush, BV and cystitus like symptoms .... tried thrush cream, actigel etc... but nothing has helped it yet.
Taking the 2 pumps of Estrogel in the morning and testosterone at night..
Have been struggling with the depression, anxiety, flushes, sweats etc... so much so that thought going mad, cannot see a way out except for ending it all.
Suffering with rage moments where i cannot see clearly..
Only rest bite get is when taking 1/2 sleeping tablet.... only sleep at night on a full sleeping tablet.
My symptoms get worse from mid afternoon onwards until take the sleeping tablets.... sleep okish overall....
When i wake in the morning my mood is not too bad , until i get to later in the day....appy Estrogel at 9.30 ... start getting worse around 2 ish
All goes downhill if get stressed..... due to all this going on for a year i have had to back my job in, struggle driving.... have no life left...
Has anyone experienced getting worse on Studd regime ?
Anyone using Estrogel and also Progesterone that have has an hysterectomy ?
Should i increase/decrease Estrogel ? Add progesterone ?
I am totally lost and confused and don't know which way to go.... get told still early days and give it more time...
Which is easier said than done if suffering with really bad depression and suicidal thoughts...
Can anyone help or recommend where to go to get this solved..... just want life back before i lose it all
Thanks
Y x
-
I am sure that ladies who have been to see Professor Studd will be along.
Has anyone suggested that some of your symptoms may be due to vaginal atrophy? Have a browse for the various topics and if it fits your symptoms, speak to your Practice Nurse about treatment.
UTIs often mimic VA symptoms. A fresh urine sample should be sent to a Lab. and if bugs are grown, then the correct anti-biotic can be prescribed. My bladder sometimes feels irritated :-\ so I up the number of nights that I use Ovestin as prescribed by my GP.
Where do saliva tests come into all this :-\ - blood tests are reliably un-reliable as hormone levels alter all the while 24/7 .......
-
HI CLKD,
Thanks for the reply
I haven't been diagnosed as having VA , but had vaginal dryness... and over the last 4 yrs intercourse was getting more and more painful , so that is no longer on the agenda.
The symptoms only came on when started the Estrogel... never had the issues this bad when was on Estroil etc..
The saliva tests were recommended by the two previous private GP's stating shows the available hormones for use.... but as you say they fluctuate from minute to minute..
The new GP has only done the blooded for testosterone and thyroid function.... testosterone was 0
Y x
-
yriches65
Stick with this Studd regime - it is very early days and it takes time for the body to welcome and adjust to the hormones.
I'm afraid the previous doctors you saw were giving you totally inappropriate treatment.
You need to try some relaxation techniques and stop analysing everything. Try to get on with some fun activities to stop you thinking about how you are feeling all the time.
Hormone treatment can't solve everything. Get some exercise, brisk walking is great or join a yoga class.
Be patient - you may start to feel better in the next 4-6 weeks. DG x
-
Thanks Dancinggirl...
Do you know whether i need an Progesterone ?
Very hard not to analyse...as being going for a year... and struggle with driving as currently makes me more anxious, so feel like a prisoner in the house..
I go walking the dogs , sometime struggle with the energy...
Get out and about with the DH , but sometimes struggle with my mind.. which is then a downward spiral.. the only thing that puts it straight is 1/2 sleeping tab...sometimes dig in and go without... and eventually passes
Y x
-
If you have no womb then you don't need a progesterone. That's really good as the progesterone is the "difficult" one to get right.
So.....it's a case of finding the correct amount of oestrogen that you need to make you feel better.
A gel would be best for tweaking to get to the point that you have symptom control and feel good.
I hope you find a regime that suits you really soon.
-
You definitely don't need progesterone.
As Mrs B says maybe oestrogel would help.
-
I had hysterectomy too and I was told estrogel is not a good option for us. It provokes high plasma peaks and we need to avoid that. I did terrible on estrogel.
My actual recipe is: .25 estradot patch (I am long time migraineur so can't increase but you could go higher than this) as the patch delivers stable level of estradiol. I also have 100 mg of progesterone at night to calm my "all over the place" body. I also have Ativan if things go wrong. I have started magnesium for migraines, trying to increase to 500-600mg a day. So far so good.
I was a pure wreck when I started. I just cant write all the problems I had, would be too long. I was 2/10. After 7 weeks of this regimen. I am now a 6/10. Not perfect but better. I might try to increase to .37 but I found HRT giving me bad ear ringing, headaches, water retention and head pressure as well. I just need to accept that things will be different now.
I strongly recommend that you fight for your quality of life. Dont give up. There is something out there right for you. You just need to find it.
-
Progesterone won't harm you, some hysterectomised ladies feel better on a low dose of it. What was the reason for your hysterectomy? If you had endometriosis then adding some prog could be beneficial
I had a hysterectomy at 32 saving ovaries but the blood supply was compromised leaving them hardly functioning, was given oral oestrogen and I felt back to normal for 13 years, so strange how our bodies suddenly reject a working regime , I've never felt the same since my 'crash' either but better than I did, I'm trying oestrogel (2.5 pumps now as night sweats came back and Tostran gel)
If you like to try progesterone there's a tablet called livial/Tibolone that mimics and gives benefits of oestrogen, progesterone and testosterone. It's hit and miss with ladies but always worth a try
Failing all that and let's be honest you've tried quite a lot like me have you considered low dose antidepressant ? I've resisted but starting to think maybe worth a try x
-
yriches65, I would stick with Professor Studd's regime for now because it is flexible and you can easily adjust your Oestrogel dose. Firstly, I would split the gel dose by 12 hours and use one pump in the morning and one pump in the evening. You may find that it helps to have a more even dose of oestrogen. Another option would be to increase to 3 pumps of gel everyday.
If that doesn't work, why not try taking a couple of 100mg Utrogestan capsules vaginally every week, say one 100mg capsule on Monday and another on Thursday? You would not need a high dose of progesterone but you might find that a low dose has a calming effect. Even one capsule a week might help.
Another option would be an oestrogen implant but you would need to establish how much oestrogen you need in order to feel good.
Professor Studd's regime will not work for everyone, no regime ever does, but it succeeds far more than it fails. I would trying tweaking the gel dose first and then go back to him if you don't get any improvement.
Edit: I forgot to mention that I also take 1 x 25mg DHEA tablet everyday and have found it really helps. I now produce a small amount of my own hormones again and it has helps with progesterone intolerance and migraines.
-
Also get treatment for the vaginal dryness which is a separate issue to all the rest menopause symptoms. It may otherwise cause the vaginal lips to fuse or get itchy or the bladder to feel irritated ......... your Practice Nurse/GP can give advice on which preparation would be good to try, I have found Ovestin into the vagina on a regular basis, plus the occasional application of KY Jelly on the outer/inner lips helps a lot.
Hopefully the advice thus far has been of use ?
-
Hi really sorry you are feeling like this but really know where you are coming from. I had full hyster 7 years ago & could not find a HRT regime to suit me. Progesterone made me crazier. Everyone is different & so HRT really should be tailor made for you. I am sure you will find what works for you but don't give up as there is definitely light at the end of the tunnel
-
Hi Julation,
thanks for the reply...
What progesterone are you on ?
Thanks
Y x
-
Hi Annie0710
Thanks for the reply..
The reason for the hysterectomy was due to endo and also tumour found on left ovarie which was beign :)
Don't really want to go down the AD route... feel bad enough taking 3.75 mg Zopiclone to help me now and again when really struggling
Y x
-
Hi Mary G,
Thanks for the reply... at the moment the GP won't prescribe the Utrogestan, as they say i don't need it due to having no uterus...
Just want to get right so will try anything to get there
Y x
-
HI Paisley
Where are you now then if not on HRT ? ever get sorted ? and find the light ? If so what was your salvation
Y x
-
Hi Annie0710
Thanks for the reply..
The reason for the hysterectomy was due to endo and also tumour found on left ovarie which was beign :)
Don't really want to go down the AD route... feel bad enough taking 3.75 mg Zopiclone to help me now and again when really struggling
Y x
Please make sure it's not the zopiclone causing some of your problems. I went through exactly what you are going through in 2011. I felt like a complete freak because no HRT was helping me. Then I found out it was the temazepam I was taking, which is similar to zopiclone. I never believed how horrible benzos and z-drugs could be until I experienced the worst of their side effects. It's horrible.
-
Hi Dana,
Many thanks for you reply... how did you managed to stop the temazepan ? Also how did you find out it was the temazepan that was causing the problems.
Did the HRT kick in when you came of the temazepam ? If so how long after ?
At the moment only take the zopilcone when really starting to struggle... helps things settle and can do more life things... still need the tab at night to get to sleep.
At the moment only thing that keeps me sane
Many thanks
Y x
-
My gut just told me it had to be the tamezepam because there was no reason why I should be struggling so much with the HRT. It was just purely through doing a lot of reading that I had the light bulb moment.
It was a very long process for me. I transferred to diazepam/valium because that is easier to wean off, although none of it is really easy, depending on your sensitivity to these drugs. I was only on 5mg valium, but it turned out my sensitivity was very high. Not everyone is that sensitive though.
I found a really good site called benzo buddies and got a lot of information and support there. People just have no idea how horrible these drugs are or how quickly you can become dependent even at quite low doses.
I've been off the valium now for 3 years and I feel fantastic. The estradot patches work really well.
-
Hi yriches65
I stopped HRT on May 8 so still early days & at the moment going through all the symptoms from coming of the HRT. I was a bit scared coming off as had been on HRT for 7 years & so even though it wasn't helping my body had got used to it. Have good days & bad
-
Hi yriches 65
I saw Prof Studd about 3 years ago and did the oestrogel, utrogestan and testim regime. I tried it for a few months. From the start the oestrogel didn't agree with me, using the utrogestan for 7 days each month. The anxiety got worse when I started the oestrogel. I had a lot of symptoms before going on that regime, including very bad anxiety, that regime made me a lot worse. I didn't think I would ever feel better and I know it sounds drastic thought that I would never be normal again.
I had to come off of that HRT regime and used nothing for about a year after that trial. I know Studd's regime is supposed to be the best, and I did feel a failure when I couldn't get on with it.
I had a couple of friends that were using the Evorel conti patch and they were fine with that. I went to my GP and asked to try the patches, it did take me time to feel okay. I cut the patch to a third to start with.
I am so much better now, I'm out running every day and mostly enjoy life. I do get the odd few days when I feel a bit anxious, but nothing like I used to be.
Hope you feel better soon.
xx
-
I would stick on the routine you are on, the gel is great as you an up the dose by a pump if you are still having symptoms, give it perhaps another month at least and if you do not feel any better then you could consider a patch. I wouldnt think you would need the Utrogestan as you have no uterus, hope that you soon feel better the gel is wonderful and after also trying various potions and creams etc I went onto that and have never looked back.
-
Hi VickyP
Many thanks for the info.... glad you are feeling better now....
How long after the starting the patches did you start to feel better ? Are you on the just the patches or anything else as well Progesterone , Testosterone ?
Many thanks
Y x
-
Hi Shortie,
Many thanks for the info... glad to hear you are feeling better...
Are you still on prog and testim gel ? If so what is are the dosage you are on
Also what is the dosage of the Evorel patch ?
How long for the patch to put you onto the better road ?
Thanks
Y x
-
Yriches, your pattern of symptoms and timing are EXACTLY the same as mine! I am just over 2 years TAH/BSO.
I had a meeting with my gynaecologist yesterday who performed my surgery and he has been marvellous, consulting numerous colleagues in a bid to help me (some of the UK's top specialists).
I'm now off HRT completely - I was an even bigger mess on it, and this seems to be a particular problem for us surgical menopause ladies.
My consultant tells me that our pituitary is driving our hormone production via the adrenals, and that with time this will 'reset' itself. When I throw in HRT this causes a violent response as the pituitary then has to switch from signalling the adrenals again. Its unique to us - a feature of our bodies having gone into shock from the sudden removal of the ovaries and the drastic compensation our endocrine system has had to make.
I don't expect anyone in natural meno. to nescessarily understand this btw - believe me, I have had a LOT of professional input on this!
So - you can either persevere with HRT but it may take many months to try to achieve balance and for things to settle. Or you can attempt to persevere without - whichever is bearable for you. If you follow the latter path, be sure to take care of any uro/vaginal issues and supplement well with a vitamin d, calcium and magnesium to assist your bones.
The consultant I see helps many women who are BRCA double positive, breast cancer patients and ovarian cancer patients on total estrogen block so he KNOWS how tough it can be, and it is! It mainly just takes time.....I know this isn't what you want to hear right now but its a fact that we ARE different and things can be so much harder for us.
I am sending you so many hugs, and hope that this helps in some small way. Remember, rest and relaxation are key and please don't beat yourself up if there are things you cannot do right now. Be kind to yourself, and remember that tincture of time is a great healer. xxxxx
-
Wow what a great post Tempest, that makes me understand more what I am going through. Many thanks. Makes lot of sense: hyster ladies we go in shock everytime we start or stop HRT. So looks like we don't tolerate but we are just in shock!!! My heart did very bad going off hrt so I take very small E and P doses for the moment, to avoid another big shock. After 6 weeks cannot say its working that great... probably have to wait.
-
Hi yriches65
Thanks for your reply.
I am using the Evorel conti patch that is with progesterone, friends using the same and told me about the conti patch and they are good on those. I have a friend who is using the Evorel patch without the progesterone, she has been using that regime for 15 years and is fine.
I know a lot of the ladies on here will say the oestrogel and utrogestan (if you need the progesterone) is the best HRT regime. It might be for some, but I felt terrible on the gel and also the utrogestan for 7 days (I was confined to bed with terrible stomach pains on the 4th day of using the progesterone). Different things suit different people!!
It took me about 4 months really to feel better, with cutting the patch to start with.
Let me know how you are and hope you feel better soon.
xx
-
Hi Tempest...
I am glad your gyne still cares... post op...never really saw mine again... and the local gp's were useless ref HRT and the problems i was having 3 yrs in on it , hence coming off.
It has been 12 years since my surgery and 9 years off HRT until recently.... off HRT wasn't too bad may be a hot flush now and again and a funny turn if i got excited...vaginal dryness has been getting worse and worse over the recent years and also have lichen scleroses down there.
Things weren't too bad until last year when i has another UTI, which found stressful... then started resulting in anxiety, insomia etc... and downward sliding from there...
Due to this had a 24 Cortisol test which showed my cortisol levels were high expecially in the morning and evening which were very high, and also low DHEA. The dr i was seeing then said i had early stages of adrenal fatigue ..so not sure if the early yrs of menopause due to surgery were taking there toll and the uti was the aspect of the 'straw that broke the camels back', he then subsequently did a sex hormone test which found my
Estrogen was in range but on the low side
Progesterone was very low, basically 0
Testosterone was basically 0
So then prescribed me with compounded bio-identical , bi-est, testosterone and progesterone...
Have then been struggling since on different regimes...on my 3rd now...now and again having a good day (must be when the levels hit right)
Also taking supplements to help the adrenals e.g. Vitc , Vit D, Magnesium , MK7, B12 , Vit B complex...
I do wonder if my adrenals would now be able to support me now if i did come off HRT, as i mentioned things weren't too bad prior to last year except for the vaginal dryness getting worse... but would use daily moisturiser now days or some vaginal estrogen.
Many hugs back
Y x
-
Hi Vickypk
Thanks for the info.... gives us hope .... are you still on any testosterone ?
Also are you a hyster lady ? Reason for asking is the progesterone element
Thinking of coming of the Estrogel.... some will say i haven't given it long enough... but cannot cope with the symptoms especially the feel of doom, dread and being scared... getting to the stage now where don't want to be in the house, but don't wont to be out either... feel like i am going mad.... cannot even enjoy being driver around in the car anymore :-(
Only thing that straightens me out for a few hours is 3.75 mg zopiclone.... i know i shouldn't but the only thing that gives me a rest bite from the insanity..
I need to get sorted or at least on the way to improvement as getting married in Sept.... already had to cancel the wedding this year due to all this
Big hugs
Y x
-
Hi Tempest,
How are you doing off the HRT now ? Any of the symptoms improved.... how long was it before you started noticing the improvements
Big hugs
Y x