Older Women using HRT please HELP

Women's health
1

First apologies for the length of this post.  Bare with me, but I really need help.  Ladies, I've really tried everything and am at the end of my rope.  So hoping some one out there might have a similiar story. I'm 60, and want to stop vaginal atrophy and have a somewhat normal sex life.  

I tried BCPs in my early 20s, and in perimenopause in early 40s.  Both times a total disaster.  I tired bioidentical estrogen/progesterone in perimenopause, it was even a worse disaster.  Got to menopause without anything.  Felt ok, no hot flashes, or huge problems.  But three years in, started painful sex, vaginal atrophy and dryness.  I was given vaginal Estrace.  By regular use, I felt great, better than I had in years.  More energy, and sleeping like a champ.  The only down side, horrible itching on scalp and my hair started falling out.  Only thing that helped was some progesterone cream.  Since that time, I have worked with some of the best "professionals" out there.  I've tried creams, pills, vaginal suppositores, patches etc.  Various combinations.  I started low and wernt slow.  For a year worked with a known professional, who charged $3,500 up front cash and guartanteed she could make this work.  NOPE, I felt absolutely crappy on estrogen patches, and the only time I felt half way normal was when I also had progesterone with it.  Finally gave up on her promises and left her practice.

So here it is, these hormones change how I look, my skin, hair and nails, my brain, how I sleep, YOU NAME IT!  But what I hate is that it's usually a bad thing.  Bad hair, bad nails, bad skin, bad feelings, bloating, weird sensations, feeling of fat growing on my legs and butt, etc.  Sometimes I think I am jinxed.  

Are there any other older women out there who have had bad reactions to HRT?  If so, can you please share your experience? Did you find anything that worked?  Or did you give up?  Anyone just back to no hormone therapy?   If so, how do you feel now?  Am I alone on this?   

I actually want to do hormone therapy.  I've personally bought into the theory that in the long run this will make us healthier and offset/avoid some of the effects of aging.  I've studied at nausium, paid dearly for (non) help, and done everything as suggested.  So what gives?   ANY ONE ELSE?

  

2

Hi gailannie, so sorry you are having such a hard time of it.  Oestrogen supplementation is supposed to improve all those problems as it has done for me.  So I guess I am not the person you are looking for.  I am going on 66 and have been using hrt for nearly 27 years.

It just seems really strange that you are having these problems.  I have found oestradiol oestrogen just the best (bio-identical).

I have heard of the Mona Lisa Touch treatment for vaginal atrophy.  A couple of ladies  on patient who have had it swear by it.  But that does not cover your other issues.

If you still have your uterus, you will need progesterone anyway.  It sounds like you need strict monitoring to get your dosage right, but then that is what you paid $3,500 for, isn't it?  Is there a government funded women's/familyy planning clinic nearby who aren't in it for the money?

I really hope someone responds who has some experience with this problem.

 

3

Hi there Gailannie.

I have been using Livial for many, many years and,  as I have said in earlier Posts, each time I have gone off it I have gone back to square one - with all of the things you mention and more.  I have also mentioned previously that these days (at nearly 75 years) I prefer quality of life and wellbeing.   These days I take one tab every second day.

I believe some women are too concerned about HRT and put up with symptoms forever - but take a look at Women's eNews (Women's Health, article written by Maqllory Locklear in April 2016 - 'This Heart Doctor Wants to Clear up Confusion About HRT'.......quoting Dr Howard N Hodis). 

The article may help you to make up your mind.

Good luck.

4

Thank you so much for responding.  I got to the article you sugessted, and must say that I agree with the doctors take.  I never bought into the WHI, and felt that it was very poorly reported.  

Interested that you mentioned Livial, because it was suggested for me from a couple of people (Tribolone).  However, when I asked about it, the female I was working with said she didn't think it was on the market any more.  That ended that discussion.  So I need to do some more research and fnd out what exactly what's in it.  All I know is I hate estrogen patches.  It doesn't do well with my system.  So i need to find something else.  

Thank you again for responding.  

5

Hi. It really breaks my heart to be unable to offer you any help, support or advice as you have been a tower of strength to me and to so many others.

I honestly never knew you are suffering so badly yourself and I truly wish I could help you with answers.

I am currently off HRT due to bleeding as a result of thickened endometrial lining. Had a hysteroscopy and D & C on Friday last but won’t have any feedback on it until I go to my gynaecologist on March 22nd. In the meantime I will be off the Estrace 2mg and Prometrium 100mg that I have been on so I will keep you updated on ow that goes. So far I haven’t had hot flashes or any of the other symptoms other than awful tiredness, but unsure if that is because I have been bleeding almost constantly since Christmas Eve. I have lost 6kg since then, even though I thought I was eating normally!!

Like you, I want to take HRT for the ‘benefits’ it brings – which I believed were heart and bone health, better skin and hair etc. I rebelled strongly when my gynaecologist suggested stopping it. He is hoping that I won’t want to go back on it – I am hoping he will agree to give me a prescription! I don’t know which of us is right as his only reason is he’d like to see if I still need it or could do without it.

So I will be watching my symptoms closely and no doubt any I miss will be picked up by my husband who is demented from all this at this point!!!!!

I am so sorry I can’t be more helpful. You will be in my thoughts.

6

And have to ask, are you in the US?  I just looked it up and it wasn't listed for the US, so now I'm really wondering if this is even an option to try for me.  

7

Actually, I just remembered an experience I had.  For 6 years, my hrt was suddenly not working and I was suffering extreme head and face sweats, constantly.  So my symptoms were being ignored because 1) my thyroid was ok, and 2) I was using hrt.  I went to another dr and she referred me to an endocrinologist and I was found to have excess prolactin caused by an adenoma on my pituitary gland.

My symptoms were not tet book excess prolactin.

The prolactin was making my hrt ineffective.  It may be worthing having your pituitary gland hormones checked out.

 

8

Thanks so much for responding.  Sorry you've had so much to go through lately.  My lining thickened also on the patches.  Was 12 mm, and I did a biopsy that turned out fine.  

I just don't know how to get things in and have it feel right for me.  I do know that the combination of estrogen and progesterone made me feel more normal.  

9

Thanks Sheryl.  I am aware of the problems with prolactin and estrogen.  however I've never had it checked.  That might be something to consider.  Can you tell me how this tests is done?  Blood work?

And what did you do about it.  

10

As I was referred to an endocrinologist who ordered the blood tests for all pit gland hormones, I am not sure if a gp can order them.  I don't see why not though.  Then I had an MRI which showed the little tumour on the pit gland.  It seems that quite often two of these hormones are generally affected and my growth hormone was slightly high but not enough, it seems to be treated.

The medication for excess prolactin is Cabergoline.  Its affects were immediate.  I suddenly stopped head sweating just as quickly as it started.  That was 2008 and I am still taking Cabergoline because as soon as I try to reduce the medication (which is not a lot in any case), I get menopausal symptoms.  My endocrinologist says there is no harm in taking them forever.  I seem to be very oestrogen sensitive and very oestrogen needy.

My 100 mg patch (make sure yours is a matrix one and not one which gives you the full dose in one go) only lasts me 1.5 days now, and I top up with a gel, because I cannot be prescribed enough patches.  I don't mind the patches, except for the itchy rash from the glue, and it quite often just peels off.

A couple of years ago, I found a compound chemist who makes the implant pellets which is what I was first put on.  They were heaven.  Except a 12 month one only lasted me 9 months.  So I happily went back on the implant pellets but they were not giving me the full effect that I used to get.  I phoned the compound chemist and she said that I probably need a 100 + 50mg pellets at once, and that they are now made to only last 3-4 months.  No wonder I was having problems.  She also said we need more oestrogen as we get older!  And here we have drs insisting we go off them!

If I forgot to put on a new patch on the day, about mid morning, I would suddenly get waves of depression, anxiety or agitation.  Why am I feeling that way (unnecessarily)?  Oh, forgot the damn patch.

Now that I have found that I do need more oestrogen, I am now not mean with myself and will top up with a gel.  On the gel days, I apply one in morning and one late afternoon.  Otherwise, I have head sweats during the night.  When I get headsweats, I realised I had forgot to top up with the gel.

I am looking forward to trying the 150 gms of oestrogen pellets.  IF, my dr will prescribe it!  She is starting to come around to my weirdness.  She was anti hrt to start with, quoting the flawed research.

As I don't have a uterus, I don't need progesterone.  However, as I had heaps of endometriosis in my abdomen that the dr tried to remove, another dr suggested I use the progesterone to prevent the oestrogen from activating any left over endometriosis.  I am not sure if it did anything for me.

When I found out it was an oestrogen antagonist (I don't really understand it fully), I wondered if it was fighting my oestrogen too much.  I stopped taking it, and my hair stopped falling out, but I stopped sleeping well!!!!

Back on the progesterone, and I am sleeping better but my hair is back to falling out.  I use Nizoral 2% shampoo for years now, and get regrowth that now keeps up with the fall.  Keep on hair for 5 mins before rinsing, and do not use a conditioner.  I use an aftershampoo treatment on ends of hair that does not need to be rinsed out.

It seems to be imperative for a woman who still has her uterus to take progesterone to prevent break through bleeding and risk of cancer.  What I do know is that the progesterone we are prescribed is really a drug pretending to be a hormone so I don't think it works as well as a bio-identical progesterone, which I believe can only be bought from a compound chemist with a script.

Another hormone thief is haemochromatosis, which I have.  That could explain why I need more oestrogen to be symptom free.  The symptoms of haemochromatosis are often the same as menopause, so a women with both are having a double whammy of it.  The test for haemochromatosis is an Iron Studies blood test - not just iron, but you should have ferritin and transferrin saturation % tested as well.

If your levels are high, then a blood genetic test is performed.

Drs should do Iron Studies as a matter of course, as it is a window to a lot of issues - but they don't.

Vit B12 and D are also very important tests to have done.  Deficiencies in these can destroy health.  (Vit D is actually a hormone too!)

I will be very interested to hear about the results of your tests, and hope they provide a solution for you.

 

11

Hi Shazanne. I have to agree with your comments on the help and support Gailannie has been giving to all of us. So informative!

Could I ask, is haemochromatosis an excess of iron in the body? I am self medicating with iron supplements due to anaemia from heavy periods. I was prescribed iron last year when ferritin was low, 9, and have continued to buy them myself.

12

Hi Gailannie. I have been using Evorel Conti patches since last autumn. Combined estrogen and progesterone slow release. I change them twice a week. I was given them as I'm 58 and had missed 3 periods. I have started irregular periods/bleeding again and currently having tests for this.

I have small fibroids too but hoping they will shrink as menopause nears.

But I have felt great using the patches and don't want to stop so hope I'm not made to!

One thing my friend told me helped her vaginal dryness is Omega 7, sea buckthorn oil. Maybe worth reading up on it.

I have used Vagifem pesseries, (is that the same as Estrace), and they helped me with dryness.

13

Yes maisie, it is an excess of iron in the body - but not from taking iron supplements. It's actually an inherited discorder (genetic) that causes the body to absorb too much iron from the body. Funny thing about it is that the symptoms can often be amost the same an not having enough iron in that it makes you feel tired and weak. But apparently it can also cause joint and abdominal pain.

I personally never that iron on its own - only as part of a supplement. Mainly because it causes me to suffer constipation (which I have anyway!!) and also because, with a good diet, you really should need it. But if you were diagnosed with anemia you needed to bring your irom levels up.

Might not be any harm to get your iron levels checked again? Maybe cut out the iron for a month or more before you do to see how you levels are balancing out?

Are you still having heavy bleeding?

14

Thanks for replying Shazanne. I have periods every 6 to 8 weeks now for last few months. I have been taking tranexamic acid which reduces the blood loss. I have spotting too. I have multiple small fibroids. I'm currently having tests for this, waiting for hysteroscopy. I've been on evorel conti hrt patches since last autumn.

Yes I think it is time I had my ferritin level checked again. Thanks for the info x

15

I took that tranexamic acid a couple of weeks ago. Took almost 5 days to stop bleeding. Had a hysteroscopy on Friday last along with a D&C. Haven't seen gynecologist yet to get a report on the procedure. Was on Estrace and Prometrium up to two weeks ago but he stopped it after heavy bleeding landed me in Emergency at hospital. Hoping I can continue HRT if they can sort out this bleeding issue. Haven't bled since the procedure on Friday but feel as though it could start again any time - only spotting since yesterday. So sick of it.

16

I've read some of your other posts Shazanne so you don't have to repeat yourself! Sorry you going through a bad time with the bleeding. Hope you get good results back soon and can get back on hrt.

I'm pretty sure it's the hrt causing me problems along with the fibroids, I don't think I should have been put on a combined continuous hrt as I haven't reached full menopause yet. Only missed 3 periods last summer and the night sweats started amongst other symptoms.

It's a nightmare when all we want to do is enjoy our later years!

Take care now

17

hi , i live in central Scotland, i am 62 i was on hrt from 39 when i had a hysterectomy till i was 55 then the doc stopped it, i have put up with thw hot flushes , night sweats , no sex, urine infections to name but a few, i felt great on hrt and have tried numerous times at my gp to get it but they refuse, i have been told all the risks and have read about them but for me the benefits outway the risks,it should be my choice to take it or not, it would improve my life 100%

18

So these symptoms are still occurring 7 years later!  For some, they don't go away.  I sympathise because I am very oestrogen needy too.  If every dr refuses, trying investigating pregnenolone.  You will need to look it up to find out about it.  Probably only available via a compound chemist (with a dr's script) and more expensive.  But maybe worth it to you.

Also, go armed with up to date information about hrt and don't let them quote flawed research to you.  Insist that they update their knowledge.

 

19

thanks for that if i have no joy i will read about Pregnenolone and will try that if i can get it