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Author Topic: The Surgical Menopause Thread  (Read 72024 times)

Tempest

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The Surgical Menopause Thread
« on: January 23, 2017, 05:56:28 PM »

Hi, fellow TAH/BSO and BSO ladies. Hurdity suggested that we might have a thread of our own - so here it is! I'll bump it regularly, but I thought it would be good to have a place where we can all 'meet'.

It would be nice if you could all introduce yourselves so that we can get to know  each other! :)
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Nikki180515

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Re: The Surgical Menopause Thread
« Reply #1 on: January 23, 2017, 06:40:53 PM »

Great idea!

I am Nikki, I had my total hysterectomy and BSO in May 2015 aged 43.Was left with no HRT for 6 weeks and my body just went into shock I think from having hormones to having none at all!

After having a mental breakdown and being signed off work and lots of pestering doctors, i finally got an appointment at the menopause clinic, who told the doctors I needed my hormone levels checked - which I had been asking for for 3 months!!!! 

Anyway after upping my sandrena gel to 2mg, adding testosterone and still on 20mg of Prozac. Also adding vagifem and oestrogen cream, I am finally feeling a bit like my old self!

It makes me so angry that we have to suffer like this, due to lack of knowledge of doctors on the menopause - I know there are a few good ones out there though!
The fact we have to fight for menopause clinic appointments astounds me - again I know it's a postcode lottery on what care you get!

Anyway rant over, hope to hear of others positive experiences

Nikki xxxx

Ps one thing I've not managed to sort is the joint pain?  I started vitamin d a few weeks ago, but no improvement! It's mainly my knees that are bad - to the point I was limping around today! 😒
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Rhiner

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Re: The Surgical Menopause Thread
« Reply #2 on: January 23, 2017, 07:26:13 PM »

Great move Tempest!

I had a BSO in Feb last year, I was classed as post meno, as 3 years since last period.  1 day post op, I started to feel very unwell, thought I was having a reaction to the aesthetic  (and was checked for this), got worse as the days went on, insomnia, head in a complete daze, faint, weakness like Ive never felt before and the very very low. Surgeon dismissed this at first as not hormonal, he didn't know what was wrong with me had a whole raft of blood tests and all fine except.....oestrogen nil (which is what he expected!!!)

After 2 weeks went on Femoston, after 3 weeks started to improve, then 8 weeks in bad headaches started. The surgeon did not want to know! Then got a meno specialist, from this forum and started on oestrodot. Took around a month to feel anything like normal and time to sort out dose. After 2 months I started Utrogestan. So been on oestrodot 75ug for 6 months and Utro for 4 months now.

Rhiner
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walking the dog

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Re: The Surgical Menopause Thread
« Reply #3 on: January 23, 2017, 08:14:33 PM »

I will be joining you soon ladies im just waiting for a date
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Tempest

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Re: The Surgical Menopause Thread
« Reply #4 on: January 23, 2017, 08:25:32 PM »

I think some of you already know my story.... :o

I had a hysterectomy aged 36, and bilateral salpingo oopherectomy in April 2015 aged 46. I went over a year without any HRT at all as at each follow up (every 3 months) my surgeon insisted 'you will be fine. I'm not giving you HRT'. There was no family or personal history why HRT couldn't be prescribed, this was just his preference! I have been under his care for over a decade for complex gynaecological problems and have had many surgeries under his care and previously since the age of 22 - I trusted his judgement but can't believe I was so naive!!!

I managed ok despite having had the classic 'hormone crash' about 8 weeks after my surgery until January 2016 when I was hit with the most awful depression - and the joint pain was unbelievable! I could hardly climb the stairs. Curiously, I never had any hot flushes up to that time though!

I went to see my GP and asked for assistance with HRT, but was offered antidepressants instead. In despair, I tried 3 different SSRI's - each had horrible side effects and I KNEW it was HRT I needed! I then decided to refer myself to the local Sandyford Menopause Clinic who were very helpful and tried to help by prescribing Estrogel.

It became very apparent that my body was having a tough time adjusting/responding to HRT and the Consultant there thought that my estrogen receptors had down regulated. I then went back to my GP and asked as per her advice to be referred to a Menopause Clinic at one of our hospitals, but instead they referred me to the local Community Mental Health Team! My husband, in total disgust, then made a complaint to the NHS about my poor treatment and I was referred to a Consultant at Stobhill Hospital. He again prescribed Estrogel, which I did not respond well to and then switched my treatment to a tiny dose of Premarin (0.3mg). We subsequently tried to increase this to 0.625mg but the dizziness was extremely severe so I was switched back to Estrogel despite not feeling at all well on it.

I then subsequently received a referral to Professor Lumsden's Menopause Clinic at the Glasgow Royal Infirmary and I am currently under her care. I persevered with the Estrogel, and then it was suggested that I might not be absorbing the gel so was switched to Estradot, titrating doses through 25, 37.5 to 50. This was a total disaster!
I AGAIN had to switch back to Estrogel, and at my last appointment 2 weeks ago it was decided that I am not absorbing transdermal estrogen's and I have now commenced treatment with Tibolone. I have currently been using it for 10 days.

Phew!!! I hope that wasn't too long winded!  :o

This thread is long overdue I think! It would be wonderful if we can all use this as an area where we can support each other and share tips - or generally just have a chat! :)

Nikki, I don't have an answer for the joint pains I'm afraid! I've just been referred for a DEXA scan - I've previously had spinal surgery so there is particular concern there (I recovered well from that surgery though, which was in 2008. I'm just hoping I don't now have major bone loss in my lumbar spine)!

I know that 'menopausal arthritis' affects many ladies in natural menopause, but I think we should be routinely offered 'baseline' DEXA scans and again 1 year later as our hormone levels drop dramatically following our surgeries and this rapidly affects bone density. It's a travesty that in most cases, the referral for DEXA is only made following a non-trauma fracture!  :o
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Tempest

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Re: The Surgical Menopause Thread
« Reply #5 on: January 23, 2017, 08:27:28 PM »

We will be here for you, Walking The Dog! Please do join in with any questions, I'm sure we'll all be very happy to help and offer support before and after your surgery. xxxxx
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Mer109

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Re: The Surgical Menopause Thread
« Reply #6 on: January 23, 2017, 09:44:32 PM »

Hi all

Hi Ladies

I had TAH/BSO 12 weeks ago,I am 49 and was not entering the wonderful world of menopause as far as I was blissfully aware. 3 months prior to hyster I was given monthly inj of prostap which apparently put me in immediate menopause prior to op. I was prescribed Tibolone to begin straight after op as surgeon stated I would enter surgical menopause, told to take for 3 years and signed off from surgeons care.
All going ok until week 5 post op, woke to a feeling that someone was shaking the bed, was asleep alone, my eyes were involuntary rolling up and down and I became so unbalanced/dizzy I started to vomit, this episode terrified me and I called 111, advised to visit A&E who gave me an injection to stop vomitting and sent me packing. Since then I have been continually so dizzy/unbalanced and feeling like I may faint (I never faint tho) I am sleeping with light on sitting up and won't let hubby in the bed in case he moves!!!! G.P not really interested given meds to mask dizziness which work ever so slightly. I have been referred to dizzy clinic - 6 months wait but I do believe 'episode' to be hormone linked, however G.p and surgeon think not, i have back tracked in my recovery and haven't left the house since 4th January, I was making an attempt to go for a walk daily to aid recovery prior to returning to work.
Have re-visited G.P again in a hope to change from Tibolone to something more suitable in a hope that my balance improves along with my weak legs.
I am fed up!!!!
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Tempest

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Re: The Surgical Menopause Thread
« Reply #7 on: January 23, 2017, 09:55:38 PM »

I'm glad you've joined us, Mer! You can see without exception that each of us have experienced the 'hormone crash' so now you KNOW that it definitely exists (despite what your GP and Consultant have said)! It really is shocking isn't it that we're made to feel as if we're either making this up or we're crazy??? >:(

Please take a little time to have a good browse around and ask as many questions as you like here and on the other threads before you see your GP on Friday so that you're armed with the info you need about HRT types etc. Another good piece of 'ammo' in your case is to actually print off a copy of the NICE guidelines on HRT and take them to your appointment with you, highlighting the areas that apply to ladies after hysterectomy/oopherectomy (regarding referral to menopause consultant and Testosterone replacement, in particular). They really can't ignore or argue with the guidelines - it's your right to be supported and receive effective treatment following your surgery!

I wish I had known all of this following my surgery, but it's been a steep learning curve and if any of us can help other ladies in the same position so that they receive prompt treatment, we are more than happy to! Keep posting, and keep us updated won't you? You're not alone!
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doolou

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Re: The Surgical Menopause Thread
« Reply #8 on: January 23, 2017, 10:06:25 PM »

Hello ladies. I have just joined this site,  wished I'd found it months ago. I have just posted on another thread about tinnitus etc., but maybe could share mine and your experiences on here. I'll try and keep it short!  TVAH and BSO 28th January 2016. No follow up appointment.  Had to ask for operation info at pre op assessment, which was 2 years out of date. Knew something was wrong 2 weeks post op. Tried in vein to see someone.  GP's, out of hours, menopause clinic etc . kept saying all is ok, healing well, so wouldn't refer me to emergency gynae.  I had been googling and thought to my horror I had a prolapse.  Rang consultant secretary, she got me an appointment through the back door with emergency gynae,  yes prolapse.   She referred me for physio and prescription for vagifem. That was 8 weeks post op. Oh asked GP about hrt same time as not slept a full night since op. Put on premarin .625. Carried on trying to live with it. Saw physio,  doing pelvic floor exercises made my problem worse.  Eventually went back to GP July,  said I couldn't live with it and asked for a referral back to gynae. He then thought I shouldn't be on oestrogen only hrt because of endometriosis,  so put me on elleste duet conti.  Saw a consultant I hadn't seen before,  who said all seemed ok, and to go back and jump around at the gym. He wouldn't refer to urology as I wasn't incontinent.  So I gave in and booked  a private appointment to see my surgeon who I saw in October.  She confirmed I have possible moderate anterior and posterior prolapse.  Possible adhesion and possibly more endometriosis.  Put me back on the waiting list for surgery.  At about the same time,  my GP put me on kliovance, reasons I cannot remember now. Had all but constant headache since, tinnitus,  burning feeling side of head.  GP now thinks its silent reflux,  so put me on lansoprazole for stomach acid. I asked to come off hrt,  she said to to alternate days. That was 2 weeks ago. Think I'm going crazy.  Thinking of having private hormone blood test done.  Just had lots of other blood tests done at docs, all normal apparently!  What's normal?  Lol. Oh dear!  Got appointment at menopause clinic March 13th. Not got surgery appointment yet! Any ideas would be fabulous/amazing/miraculous!  X
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groundhog

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Re: The Surgical Menopause Thread
« Reply #9 on: January 23, 2017, 10:12:00 PM »

Hi ladies,
Many of you know my story and I don't want to depress or worry anyone about to have surgery as what happened to me is very rare.
I had TAH/BSO 2 years ago aged 55 - my bowel perforated.  I had had my last period some 5 years prior to the hysterecomy so o was told I would not miss my ovaries.  It's hard to say what is causing what with me because of the catastrophic bowel issue and continual problems since.  I do feel I am missing my ovaries with crushing depression, anxiety and loss of confidence.  I had the surgery for a suspect mass which thankfully was benign,  I'd had severe endometriosis for many years and was most upset to discover hysterecomy and oopherectomy is no cure for endometriosis.
Anyway that's my story,  I wish we could tell definitiely if the low mood is depression or hormone based.  I'm on anti depressants which do little but lots of problems in my life.
Good thread xx
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Tempest

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Re: The Surgical Menopause Thread
« Reply #10 on: January 23, 2017, 10:26:20 PM »

Doolou, welcome! I'm so glad you've joined us, and what an ordeal you've had! I am BEYOND angry that you were told to go and jump around a gym when you clearly had symptoms of prolapse! AND that you were forced to follow this up privately >:(

I hope you get your surgery appointment through soon!

So you're taking HRT every other day at present? This will indeed drive you bonkers! Your levels will be up and down - it's crazy that any GP would think this is a good idea for any lady in surgical menopause......But I'm not surprised, sadly. :'(

Have you ever tried transdermals such as Estrogel or patches such as Estradot? You could switch straight over to these without having to put your body (and mind) through the trauma of stopping HRT completely. Nikki also has great success with Sandrena gel (more concentrated), and adding in Testosterone gel too. If you feel like giving transdermals a go instead of waiting until March for your appointment, I would seriously pop along to your GP and ask for a change just now. These of course also don't go via your stomach, so I bet a penny to a pound that your 'silent reflux' if indeed it is this will clear up somewhat if not completely (and then you won't need to take lansoprazole)! Reflux can also be a sign of low estrogen, so you are on to a fairly good bet going down this route......

If we can offer any more help, please just shout! xxxx
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Tempest

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Re: The Surgical Menopause Thread
« Reply #11 on: January 23, 2017, 10:36:43 PM »

Welcome, Groundhog!

I'm so very glad you've joined us. :)

Are you taking any HRT at the moment, or is it contraindicated? The depression and anxiety is SEVERELY underestimated in surgical menopause, for sure!  With so many other issues  Groundhog, you really are remarkable how you endure (i've been following your story). How are things just now with your bowel issues? I'm hoping that this thread will prove to be a good support for all of us, and extra support for you too aside from your  own thread. Please visit us often! xxxxx
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groundhog

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Re: The Surgical Menopause Thread
« Reply #12 on: January 23, 2017, 10:52:53 PM »

Thanks Tempest.
I'm just on vagifem .  I can't have intimacy since my botched op so have no idea if they are working but I was getting UTIs which seem better so hopefully doing something.   Il be honest I feel  mutilated as a woman and I don't think they would remove a man's testicles so readily and then just abandon them!  Yes I do feel angry,  I did actually contact my gynae who did the hysterectomy and ask him if I could speak to a Menopause expert.  I want to know if there is a way of telling If my symptoms are depression brought on by the botched op and consequences thereof,  or am I totally deficient in hormones.  He hasn't replied yet.
My bowel problems remain and I'm awaiting corrective surgery ( I don't want to hog this thread with my bowel problems xx)
Thanks again, very interesting to read other ladies experiences x
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Tempest

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Re: The Surgical Menopause Thread
« Reply #13 on: January 23, 2017, 11:37:20 PM »

ABSOLUTELY, Groundhog! There is no way men would tolerate this type of treatment (or lack of)! You are absolutely entitled to that follow up - especially so with your bowel complications which makes your situation more complex. It clearly states so in the NICE guidelines so if your Gynaecologist doesn't reply, your GP most certainly can and should make a referral! It would really help you to sort through which issues are which - and if there are treatment options that could make your quality of life better.

I have to admit that one of the reasons I am NOT giving up on all this trying to receive treatment and if I can, bring awareness about women in surgical menopause and lack of aftercare is because my Mum had a radical hysterectomy for cancer when she was 42. Mum literally changed overnight - I was 8 at the time so couldn't understand what she was going through at that age. The subsequent follow up radiotherapy damaged her bowel very badly - they just used to absolutely blitz the whole pelvic area back then. As I grew older, I understood more and helped to care for her so I know a little of the issues you must be facing too.

One of the things I remember most when I got older was Mum saying to me 'im not crazy you know. They say all of this is in my head, but I'm NOT CRAZY'. Its only now that I know what she meant by that - that 'they' think you're crazy when you suffer from unrelenting anxiety and depression (which she did), when in fact it is caused by a dramatic and sudden drop in hormone levels. So nothing much has changed in almost 40 years.......Which, when you think of all the medical advances etc. we have made is nothing short of a disgrace and a travesty. It's in memory of her, and of course due to my own difficulties that I will never give up.

The more we speak about this and the more we share our stories, the more informed women will become and the more the medical profession won't be able to fob us off and leave us to 'get on with it' after such life changing surgery.......At least, this is my sincere hope.

Sorry for rambling on a bit there..........xxxx
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coldethyl

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Re: The Surgical Menopause Thread
« Reply #14 on: January 23, 2017, 11:43:14 PM »

I had a TAH and BSO end of Sept 2016 following a scan for unexplained bleeding - turned out to have a very early stage endometrial cancer and ovarian cancer which was detected in other ovary and on omenetum at biopsy. Currently receving chemo to " mop up" any errant microscopic cancer cells. I also ended up with a temporary ilieostomy as tumour on right ovary had stuck to bowel and couldn't be safely removed without excising large part of sigmoid colon.
I was told by gynae registrar at initial consultation that I'd be in immediate menopause post operative,y and that I couldn't have HRT - neither primary turned out to be ones that are hormonally driven so his remark seems rather premature - I haven't had any follow up by the gynae team, have had no post operative checks apart from a cursory tummy feel by the oncologist and my post operative 6 week bowel follow up is taking place on March 28th , approx 6 months later !
To be fair, I have felt a lot better post operatively - before hand I had experienced about 6 months of terrible anxiety and mood swings along with irregular periods and pelvic pain from my endometriosis and post operatively these seem to have settled down. I get odd moments of panic and anxiety but given I have a cancer diagnosis hanging over me, some of it I blame on that and certainly the intense hormonal shifts that left me feeling suicidal have abated. I get hot flushes throughout the day and occasionally on waking but they are no worse than before my operation. I have zero sex drive but this is nothing new as a lifetime of endometriosis and pain on intercourse have that effect I find.
I'm hoping that things continue as they are as I seem to be less emotionally volatile than I was when I was still having periods and going through peri. If things change , I am not sure I would be offered anything and whether if I were, if I'd be happy to take anything as I think that my body has already made two cancers so why not a third ?
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