Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Rainbow74]

Hi everyone,

I'm new to the site but have read lots of very interesting experiences.

I'm here because I feel since having my ovaries removed two years ago at the age of 40 has turnd me into an emotional wreck.

I was diagnosed with VIN 3 June 2014  (pre cancerous cells of the vulva (late stage) and  if left can turn into Vulval Cancer and because the area was nr the vagina, they had to rule out AIN 3 ( pre cancerous cells for Anal Cancer) I underwent a mapping exercise, which consists of 12 biopsies around the anal area. In the meantime, I had a routine scan due to painful periods and they discovered a large dermoid cyst on the ovary which when they operated, they discovered the ovary couldnt be saved and the other one was tangled into my bowel so both ovaries were removed.

All of the above took place within 3 months and for the majority of this time, I thought they was going to diagnose cancer and that I would die. It was a really scary time for me.

I was placed on Evorel conti patches and found these to be very helpful, infact, to the degree I was almost normal apart from the severe anxiety, panic, loss of libido - to the point, I feel numb inside and have not experienced intimacy since post op in 2014.

Finally 2 weeks ago both the consultant and nurse advised me that my symptoms of anxiety and loss of libido could be linked to hormone levels and not neccesarily trauma (which I thought was the cause). I have now been prescribed, Kliofem and Testosterone gel to boost my mood and libido. Its only been a week so can't say I feel any different yet but I'm hopefull that I'll start to live again.

Durin the past 18 months, I have seem multiple medical specialists including a psychiatrist who more or less told me to accept people die from cancer and you have to accept that and start living ( I found his opinion quite patronising in light of what I went through). Other mental health nurses have said to me that what I'm experiencing a normal side effect of trauma....

I've attended mindfulness, CBT, couselling and now waiting to attend a course called 'frame of mind'.

I work full time (civil service) in a management role and on my return to work back in November 2014, I noticed commuting in heavy traffic was causing me anxiety and panic, I was referred to occ health who helped me by suggesting my working week was split into two offices ( one closer to home). This went on for a few months but my anxiety increased and I started to drink nightly to block the anxiety and panic. It got so bad that I felt I was breaking down, so another referral to occ health and this time they suggested I work closer to home due to the distress it was causing me. My manager at the time met with me and said " so let me get this straight, its specific driving that is causing you anxiety" ( in a very abrupt tone) I explained my symptoms and her response was "as I have said to HR, if its not your driving it will be something else, becuase you have anxiety and you'll have it wherever you work". Needless to say she didnt offer me the adjustment that OH suggested and was off work for over two months until another post nearer to home was found for me.

To date, I find attending training courses, meetings and being around new people frightening.
I feel the removal of my ovaries has changed my life for the worse....I never realised how much effect it could have on ones well being.

I think after discussing the ongoing symptoms with my Consultant / Nurse I can finally see there is a high possibility that my anxiety is a contributing factor to a drop in hormones. I've researched FADS ( female Androgen Deficiency Syndrome) and the top symptoms are loss of libido, anxiety, no energy etc.

Sorry if I have posted a longer than average thread 

I heard about this site through the nurse at my appointment and I am so glad I did. It was a relief to read others feel pretty anxious and frustrated too.

I would love to hear from anyone who has seen a difference with Kliofem and Testosterone 



 

 

[Nikki180515]

Hi Rainbow

Wow you have been through a tough time!   I too had a full hysterectomy with both ovaries removed.  It was due to family history of ovarian cancer and that I has a cyst on my ovary that they weren't t happy about! When they did the op they found another cyst in my left tube, fortunately all were benign, but was advised I had Dione the right thing re having the op.

I had my op in May 2015 aged 43 and wasn't put on HRT straight away, waited 4 weeks as that is what my consultant recommended.

Took 7 weeks off work, but was working from home 2 weeks after the op - am a teacher so doing reports and end of year yearbooks etc.

Anyway returned to full time work in September, went from a happy go lucky person, who had the occasional low self esteem, to a quibbling crying wreck!!  Broke down twice at work ended up getting signed off at the end of November and am only going back to work after Easter on a phased return and dropped back to part time hours.

Anxiety is a big problem, couldn't go near my work bag for 3 months! Anxiety about going places etc!

Anyway was put reluctantly on anti depressants and finally in February went to see a HRT specialist who wasn't really much help, just agreed with me and put my HRT up to 2mg of sandrena gel daily from 1.5mg.  Told me HRT won't treat emotional symptoms and that the anti depressants will do that.   

Went to see occupational health and she had been through the same and found a HRT through trial and error to treat her emotional symptoms!

Have started CBT which I have found helpful in managing my anxiety, at the moment feel much better and feel more like my normal self so don't really want to mess around with my medication at the moment.

HRT specialist was also happy to give me testosterone as she said many surgical menopause women had found it useful, but haven't tried it yet.  She also gave me vagifem which has helped with VA symptoms.

So just to say I know what you are going through and it's not much fun at all, but there is light at the end of the tunnel, if you find a medication that works for you, it's just not much fun trying to find it!!

Keep in touch and let us know how you get on.  Let me know how you get on kliofem?  Not heard of this?

Take care

Nikki xxx

[Hurdity]

Hi Rainbow74

 

Sorry to hear about all your health problems - please don't apologise for posting! That's what this forum is for!

Just to add really re your Q about testosterone - it does take a while to fully have an effect. The consultant I went to see said 4-5 months to really work!

I do hope it works for you and you feel better soon

Hurdity x

[Rainbow74]

Hi Nikki,

Thanks for your feedback, and kind words, it's comfort knowing others feel the same.

I've started to work from home one day per week (Wednesday) just to help rest my mind so to speak. Even the morning routine puts me into an emotional state! So OH thought it may benefit me in the long run by splitting the week.

I googled Kliofem when i returned from the hospital and its a med you can take a year after menopause or removal of the ovaries etc.

I don't expect a miracle but a slight increase in these dreadful symptoms would be nice.

I will defintley keep in touch on the forum now i've found it 😊

Take care

Amanda xx

[Rainbow74]

Hi Hurdity,

Thanks for responding to me...wow I didn't think it would take that long. Suppose our bodies need time to adjust to things.

I forgot to add, I only need to use it every Monday and Friday, I have to use 1 application of gel and rub into both things across 15cm radious.

If I'm honest I would love for it to ease my anxiety and loss of interest, I am not overly bothered about the sex part ( partner probably disagree) but I expect if your wellbeing is on a healthy level to begin with then I guess that part may come naturally.

I will keep you posted. So glad I found this site too.

Take care
Amanda xx

[Hurdity]

Hi again Rainbow74

That's interesting that you are only using it twice a week - what quantity/dose are you using? I presume it's either testim or testogel which comes in sachets. Also Annie Evans didn't say that it wouldn't work for 4-5 months but that it could take that long to be fully effective. I can't actually remember when I started to notice a difference though - re muscle pain, and libido/response ( since the latter is er, not tested very frequently any more!).

Hurdity x

[Rainbow74]

Hi Hurdity,

I'm using Tostran 2%. Its in a pump form container, I press it once for the right amount which I believe is 10mg.

I must admit, Friday was my 2nd dose and last night I did have feelings again re: libido. It was out of the blue but a relief too. I'm not sure if it was a surge due having such low levels anyway.

First and foremost I really want the energy levels to increase - feel so fatigued and down on most days now 😒

Hope this helps and more importantly makes sense.

Amanda xx

[Hurdity]

It's interesting how different gynaes prescribe it slightly differently. I'm not quite sure why the twice weekly application as gels are usually applied daily whereas patches are usually changed twice weekly.

Tostran is twice the concentration of testim and testogel, but as you say 1 pump gives 10 mg - so you will be getting 20 mg per week. That is actually lower than my dose as a post-menopausal woman who still has her ovaries. I was told to use a pea-sized blob - and to make a sachet containing 50 mg T last for 10 days - so that's 5 mg per day = 35 mg per week (in practice I use less than this though).  Sounds like your dose is lower but also maybe less consistent - and you will be getting more in one hit - although from the info there is sustained release from the skin over 24 hours. However it is given daily in men so I am a bit confused by your prescription.

Maybe there are other women who use it twice weekly?

Hurdity x

[Rainbow74]

Hi again Hurdity,

I wasnt very clued up on doses but now you have explained it, it does seem like a low dose.

I have to have my bloods taken at the end of April so wonder whether they will increase my dose then.
I have been a little worried about the side effects i.e. Hair growth, lowered voice etc, but the more I research the more I see this is not likely to happen on the dose I'm on.
I will keep you posted, and thanks for your feedback, it means a lot.

Amanda x

[Tempest]

Just bumping this thread as although I know it's old, I'm hoping that Nikki and Rainbow may still pop by the forum and I'd be very interested to know how both of them are doing these days as my experiences have been much the same since my oopherectomy.

I hope you see this ladies, and are now doing well.

Much love to you both. xxxxx

[hoping4best]

I'm so glad you bumped this thread, Tempest. I had a single ovary removed 4 years ago at age 38. The other one almost immediately failed (I still have it, it produces nothing). I've had anxiety since childhood and it's managed with meds and CBT, but has gotten worse again since I went through meno. My dramatic hair loss started 3 years ago and it's made me scared to get on testosterone even with very low androgens in my blood tests. I have no libido (but I also have burning urethra a lot right now so who can say which one is the cause).

I would also love to know how Nikki and Rainbow are doing!

[Tempest]

Oh, bless you hoping4best! You mustn't be afraid of hair loss when using the testosterone - this is a big myth as we're only replacing what we have lost due to loss of ovarian androgens - I had this confirmed by Dr. Newson at my consultation last week.

It can very much help restore hair quality in time in us ladies - we are not going to become androgen dominant by replacing our testosterone. Unless dosed in gross excess or in women who don't need it who produce their own androgens in sufficient quantities, there will be no side effects except maybe a little hair growth at the patch of skin where the gel is applied - and this can be minimised by rotating the location.

Another member, Abby, was concerned as she's an oopherectomy lady too and had hair loss. I hope she's listening in as she started patches and testogel a few months back, and I was speaking to her on FB a couple of weeks ago and she's much improved now!

I think I need to 'revamp' our surgical menopause thread so that we can all get regular support from each other, and share facts that are specific to our situations as we are so different from ladies in natural meno. with both ovaries intact.

I hope Rainbow and Nikki are listening in!

Sending you biggest hugs, hoping4best! xxxxx

[Tempest]

Oh and btw - the booklet I have on testosterone says that it can also help with bladder health and tone too! xxxxx