Please login or register.

Login with username, password and session length
Advanced search  

News:

Follow us on Twitter and Facebook

media

Pages: 1 [2]

Author Topic: Stopped The Premarin  (Read 6416 times)

Tempest

  • Guest
Re: Stopped The Premarin
« Reply #15 on: September 18, 2016, 04:15:03 PM »

Oh, I sincerely hope she is ok and comes back to let us know how she is doing!

From the scenario you describe, she must have 'bottomed out' completely and we now think this is what happened with me after I had to stop the Estrogel suddenly due to chest pains (which has now been thoroughly investigated by a Cardiologist).

It is the most horrific thing EVER and I actually had psychosis. If this has happened to Donna, it takes a good while to get over that if you ever do. I'm sure it leaves you with a form of PTSD, I still get flashbacks and nightmares about it! If only I could reach out to her, then she would know that there is someone who has experienced similar to what she has been through.

If it wasn't for the wonderful Consultant Psychiatrist who believed the psychosis was caused by sudden drop in hormones, I would have been locked up and they would have thrown away the key. Over the following weeks, the GP I WAS seeing at my practice still insisted that I was having mental problems, and that made things 100 times worse. Until the Consultant Psychiatrist wrote her a very stiff letter.........As of Friday, I refuse to see this particular GP ever again!!

I just hope Donna is not now embroiled in the mental health system and being heavily medicated. THEY (whoever her 'Specialist' was) have done this to her and they should take full accountability!!! Hormones (and lack of) are extremely powerful and whoever this idiot was who did this deserves to have their fitness to practice looked at!! >:(
Logged

GypsyRoseLee

  • Member
  • *
  • Posts: 2172
Re: Stopped The Premarin
« Reply #16 on: September 18, 2016, 04:34:17 PM »

I completely agree Tempest. She was very badly let down by her HCPs, and has been potentially scarred for life by such an horrific episode.

Thank goodness your psychiatrist was open to believing you. Had they seen similar reactions before, I wonder?

Interesting what you say about PTSD, because I am convinced I am probably suffering with this to some extent. Some of the lows I have experienced have genuinely terrified me. I had no idea I could feel so dreadful. And I think the bouts of anxiety do untold damage to your psyche.

This is one of the reasons I started taking Sertraline a few months ago, because I know that prolonged exposure to stress/anxiety really strips your brain of serotonin.

I am just desperate for a period of stability. Then I can enjoy it for a while, hopefully feel more emotionally secure and from that place start to move forward and put all this behind me.
Logged

Tempest

  • Guest
Re: Stopped The Premarin
« Reply #17 on: September 18, 2016, 05:10:06 PM »

I know, I know. I've just been reading over your posts GRL and your peri sounds EXACTLY like mine! Mine was cut short by having the oopherectomy (I had a cyst and the ovaries were a mess from adhesions so the Consultant decided to remove both).

At first I was actually ecstatic that this would end my peri hell, but I have to say that I have now moved into a new kind of hell of estrogen and androgen deficiency that will last for many years, or possibly forever. If I could have my ovaries back, I would!

I often pop over to the Hystersisters website, and I have to say that almost everyone there says the same. Obtaining balance, even if you have access to the very best HRT and specialists, is extremely hard and often transient. I was told by the Gynae who did my surgery that the surgical menopause would probably last a couple of years, but I see from many others posts on Hystersisters that this isn't true. Things CAN get better in time, but I am discouraged that there are ladies there who had their surgeries in 1984 and still struggle with balance and can't manage without HRT!

The hope is that eventually when you are old enough post oopherectomy, you just won't need hormones so much any more but this can be well into old age. Also, the demand on your adrenal glands when you have this surgery done at a younger age is intense.

I still very much suffer from anxiety if my hormone needs are not being met by HRT as my adrenals struggle, as well as blood sugar problems which I have never had before (and which are very common post oopherectomy).

The best case scenario if you are able to go completely privately is to find a surgeon who will insert implants at the time of the surgery. This can be a bit hit and miss at first, as it's hard to predict what level of implant you may feel best on (it's not as straightforward as Professor Studd makes out)! There is also a risk of tachyphylaxis with repeated implants, even at the lower and more regular doses that Professor Studd advocates.

I'm sorry that I can't give you good news that this surgery would solve all your problems without bringing new ones, but I really wanted to share my experience and encourage you to pop over to Hystersisters to see how the ladies there manage in the long term.

I hope I haven't frightened you too much, I just wanted to give you an honest opinion and point you to where you can read others experiences of this surgery.

Sending you much love and biggest hugs. xxxx
Logged

GypsyRoseLee

  • Member
  • *
  • Posts: 2172
Re: Stopped The Premarin
« Reply #18 on: September 18, 2016, 05:26:52 PM »

Thank you for being honest, it's really important that we share as much information and experience as possible.

I know Prof Studd advocates a full hysterectomy with ovary removal as a guaranteed cure for PMS or PMDD. But you would think there would still be issues getting the dose of oestrogen right?

And I know there can be physical complications to deal with. I have actually been on the Hyster sisters site a few times and done a lot of reading of the experiences on there.

It really is a minefield. I hate it.
Logged

MIS71MUM

  • Member
  • *
  • Posts: 911
  • Just trying my best!
Re: Stopped The Premarin
« Reply #19 on: September 18, 2016, 06:41:40 PM »

Just catching up on forum, glad Tempest and GRL have met, I always thought you had a lot in common.

Yes I defo have PTSD from the Peri, it'll take years to erase the feelings from this time last year. But every day is a day in the right direction, away from it all.

I always hoped that a hyster would be the way out of all this. Sort of hoped that my ablation that I am having wouldn't work, and a hyster would be the next step. If a hyster wouldn't work, do I just wait to become Post menopausal whenever that might be, and should things get easier with a constant level of hormone? I do hope so? It would be nice to know that one day, It will be all over and I can start to well and truly put it all behind me.
Logged

Tempest

  • Guest
Re: Stopped The Premarin
« Reply #20 on: September 18, 2016, 08:19:00 PM »

Yes there are issues getting the estrogen levels right GRL, unfortunately! If you go over to Hystersisters (as you already have), you will see that there is a lot of discussion on 'too much, too little'. It's not an exact science, even when you have a 'flat playing field' of no ovaries.

Absorption is always an issue too - you need a constant reliable supply as 'dips' can be very unnerving! This is why implants can be ideal, but again the risk of tachyphylaxis is real. Most surgeons don't go straight to an implant (despite what Professor Studd says about inserting in the wound before closure after surgery) as an implant which is too high of a dose can be extremely uncomfortable and the only option is to live with the side effects for a good while (weeks to months) before the level drops. Some WILL do it, but it's less common. They are also an expensive commitment, as NHS England does not routinely offer implants now and there is a problem securing a reliable supply so you would need to be sure that you can afford to continue to go privately for these. There is information out there on the latest NHS stance on implants if you research.

NHS Scotland (where I am) do use them on a patient by patient basis but again, supply is an issue. There have been a couple of posts about this from users over at the Patient Opinion website. This is less of an issue at private clinics.

And then we come onto testosterone! It is virtually a must after oopherectomy in order to feel somewhat 'normal' for most women. When the ovaries are removed, we lose 70% of our ability to produce testosterone and this is vital for overall well-being as it helps with depression, lack of energy as well as libido (which is the only symptom the NHS recognises as it's use being indicated for, annoyingly)!

Testosterone implants are available on the NHS, but this is again patchy. The Testosterone patch for women is now no longer available - the UK market is not seen as viable from the drug manufacturers point of view. Therefore, the most standard practice is to use the male testosterone products in smaller quantities. Professor Studd typically advises use of 1/8th of a sachet of gel per day. This also has side effects of unwanted hair growth at site of application, and side effects in overdose such as acne, increased anxiety and rage, enlarged clitoris and male pattern baldness as well as deepening of the voice.

So, as you can see, there is quite a balancing act to be done following oopherectomy! I think it is something to be thought about extremely carefully as to whether the psychological and physical impact of this likely long term commitment would be something you could live with.

Peri is AWFUL. But it does have an end! I know it can seem like purgatory - and for me, I thought the oopherectomy was a 'get out of hell free' card but if I had had another option or more time to research (it was thought my cyst could possibly be cancerous), then I would with hindsight have fought to keep at least one of my ovaries.

Can I send you a hug, though? You will get through this!!! I know, I KNOW it doesn't seem like it but this is part of the 'menopause transition' but that's exactly what the menopause is, really - 'the change'. The body is changing, and is on a journey which is at times one hell of a rollercoaster ride but one day you will step off that rollercoaster, I promise! xxxxxxx
Logged

Tempest

  • Guest
Re: Stopped The Premarin
« Reply #21 on: September 18, 2016, 08:30:11 PM »

Oh, Mis71Mum! I know you've been having a rough ride too. Hang onto all your 'bits', with all your might if you can. You too will get through this! I can totally relate as I have said that trauma during all this is something that I believe those of us who suffer greatly is carried with us, and is not medically recognised.

It's a disgrace that we women are still being treated as 'hysterical' by the medical profession (and sometimes by female GP's too - usually those well under the age of menopause)! The label of 'hysterical' actually makes me cackle in my case, as I haven't got anything go be 'hysterical' with, if you take it in its literal sense.

What I REALLY want (and often think about in the wee small hours when I'm staring at the spider in the corner of the ceiling) is a support network nationally for all women in menopause. Drop in centres. Advice lines. HRT clinics. Access to counselling. Wouldn't this all just be wonderful???

Sending you hugs, as always! xxxx
« Last Edit: September 18, 2016, 08:36:36 PM by Tempest »
Logged

MIS71MUM

  • Member
  • *
  • Posts: 911
  • Just trying my best!
Re: Stopped The Premarin
« Reply #22 on: September 18, 2016, 08:49:09 PM »

Tempest
That's a brilliant idea - I sometimes want a "drop in" Centre, where I can go and cry, laugh, and hug out my emotions with ladies who feel exactly the same as me.

Sometimes I feel like I could care for all of us and give us all the gumption needed to get through. Then other days, I will need to absorb others gumption to get through.

I went to see a female GP about peri after missing periods for a couple of years, ( strangley mine stopped over winter times) and always always restarted over summer, just when you want to wear white, she said, "it's nothing to worry about, you're just like an animal hibernating for the winter and you are too young for the menopause". I told her my Mum was 28 but she wasn't interested.

Many thanks for the hugs and lots, lots more back to you. And I'll keep my bits intact for a bit longer ☺️

Logged

Tempest

  • Guest
Re: Stopped The Premarin
« Reply #23 on: September 18, 2016, 09:04:39 PM »

And we should be allowed to drop in in our jim jams as well, Mis71Mum!   ;)

Ooh, it's INFURIATING how GP's won't accept that we're not all 'text book cases'! As if it's not bad enough feeling like a stranger in your own body, being treated like a medical freak or not believed at all just adds to it all doesn't it??

I'm so grateful for this forum! And I'm rooting for you for your upcoming op.too.  Thank you so much for your kind words and hugs, it's so very much appreciated.  xxxxx :thankyou:

Logged

Tempest

  • Guest
Re: Stopped The Premarin
« Reply #24 on: September 19, 2016, 11:23:26 AM »

Day 3 of stopping Premarin, day 2 of the Estrogel and starting to wobble again quite badly. Not liking this at all but realise it's a big 'ask' of my body and mind switching from one to the other.

Hoping I have the tenacity to hang in there! :-\
Logged

Tempest

  • Guest
Re: Stopped The Premarin
« Reply #25 on: September 19, 2016, 04:45:14 PM »

Thank you so much, Menomale! Today is a toughie for sure.

Anxiety is through the roof, dizziness, buzzing all over. Oh the joys!!!!! >:(
Logged

Tempest

  • Guest
Re: Stopped The Premarin
« Reply #26 on: September 22, 2016, 12:49:37 PM »

Hi ladies (and thank you so much for asking, Menomale)!

Well, yesterday was a white knuckle ride!!! Was applying 1 pump of Estrogel after stopping the Premarin on Saturday. I could feel things getting pretty unstable, and when I went out yesterday to the garden centre I was feeling very shaky, sweaty, anxious, blurry vision, palpitations etc (all low estrogen symptoms for me). By the time I got home, I felt on the verge of a 'hormone 'crash' again - it was terrifying!!

Subsequently, I applied 2 pumps (which is what my GP wanted me to do straight away after stopping the Premarin in any case), and spent the evening feeling rotten. No sleep - but I hope I averted a crisis. Feel quite a bit better today, so I hope this was just as a result of rapidly dropping levels and I 'caught' it in time (everything crossed)!

Wow! It is so hard making ANY changes to your HRT when you have no ovaries. :'(
Logged

Rhiner

  • Guest
Re: Stopped The Premarin
« Reply #27 on: September 22, 2016, 02:01:55 PM »

Hi Tempest, the same happened to me when I changed from Femoston to a patch, same symptoms. Hang on in there, it took me about 3 weeks, to be able to function normally again and then get back to 'normal' - I couldn't believe that the change in dosage form could make such a difference.

Good to hear you are seen a good specialist soon.
Rhiner
Logged
Pages: 1 [2]