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 Post subject: My story - Prostap help and advice please?
PostPosted: Thu Sep 05, 2013 9:32 pm 

Joined: Wed Sep 04, 2013 7:15 pm
Posts: 6
Location: Lancashire
When I was young I suffered horrendous periods…with them being heavy and painful, and causing vomiting, dizziness, cold sweats, shaking, diarrhoea, panic and anxiety.

When I was 17 I was diagnosed with anxiety and depression, and have suffered with this right up to date, I now wonder whether this is all hormonely linked, in reality I’m positive it is.
I got married at 29, and became pregnant at 30….although still slightly anxious, oh my word, my mood was wonderful….happy go lucky, excited to be alive. Even when I started encountering some problems in my pregnancy at the end due to pre-eclampsia and polyhydramnious (too much water), I did not panic when pre-pregnancy I would have gone into a total meltdown.

A few days following my little girls birth, I changed dramatically into an anxious mess! Irrational, screechy, panicky…..this was more than baby blues, I was bordering on psychotic. Thank goodness for a wonderful husband.

I became pregnant again 9 months later, and again, all was rosy until after the birth…..this time the drop felt more dramatic, and I pretty much left the ‘baby duties’ to my husband…….how can a mother be like this?
I adore my husband, and my 2 pre-schoolers like you couldn’t imagine, and yet I am volatile, aggressive, nasty, scary……my children have times where they jump and flinch when I yell…..they think im going to hurt them, and im not sure myself if im honest!!

My 4yr old yells and screams at her sister in a ‘mum way’……she is copying me!!!! I want to run away, (or worse) to save her from my parenting…….and yet I love her sooo much……but this is what she will remember! My children will not and should not understand why mum is like this, they will just see and feel anger and resentment.

I feel like they would honestly be better off without me (when im like this), and when I have a very occasional good day I feel on top of the world, and wonder how I could ever be so mean and nasty to my beautiful babies, and wonderful husband.

The treatment I have tried so far…..
Citalopram, Seroxat, The pill, The mini pill, B vits, Evening Primrose, Agnus Castus……and currently I am on Prostap injections to induce a chemical menopause, and Fluoxetine (long term, however recently increased).

The prostap seemed like a miracle until I recently hit 1 year of treatment. I had no menopausal symptoms, and life was really good….not perfect but really good. I felt optimistic and internally happy…..I had aspirations and life goals. I enrolled for university as a mature student to study psychotherapy to help people like me! I had a spring in my step…..life had possibilities!

Then at 1yr I felt anxious and panicky, but more importantly to me the ‘red incontrollable rage’ was back with a vengeance…..i felt out of control, and pestered my Gynae consultants secretary to put me in for an urgent appointment, I got one for a months time.

My consultant told me that he wasn’t surprised as what had probably happened was that I had reached a full chemical menopause now, and my oestrogen levels were low. He has now put me on Tibolone, I am 3 weeks in and feel awful……….where do I go from here?? Is it too soon to feel well on it?

I’m angry, muted, reserved, aggressive, impatient, and closed off from the world. I feel depressed, fatigued to the point of illness, and so very very sad. Im terrified of hormonal treatment causing some irreversible problems.

Im pretty much decided on resigning from my NHS position of 19 years, as im just a big mess who is off sick more than im in, and not very well understood. Im just the woman with the mental health issues…..but I don’t believe I am! I have a hormone problem, and just need some help with it.

I cannot live like this, and refuse to keep letting my children ‘endure’ me……I WANT A LIFE!

:? :(

_________________
Lisa x

Long Term Prostap Injection.....under review??
Fluoxetine 40mg daily
Pregabalin 200mg twice daily


Last edited by LisaM on Sun Mar 15, 2015 7:45 pm, edited 1 time in total.

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 Post subject: Re: My story - Help and advice please?
PostPosted: Fri Sep 06, 2013 6:31 am 

Joined: Thu Nov 29, 2012 5:00 pm
Posts: 79
Hi LisaM,

Your story rings so true of many women who suffer from severe PMS. Sounds like you've got a good gynaecologist however, and this can be sorted. Tibolone is either brilliant or horrendous for the woman taking it. I couldn't tolerate it at all, from your symptoms I would say that you may be struggling too. However, it's up to you whether you want to see if the side effects wear off and you settle on it so it might be worth you discussing this with your gynae. You can always try a different type of HRT maybe one with a different progesterone in it or an oestrogen only with progesterone added 3 or 4 times a year may be possible. Unfortunately the progesterone is necessary to protect the womb lining but you don't need it every day (as with Livial) or even every month so definitely think about chatting with your doc about it.

The other thing might be that the Prostap has done it's job and you have become desensitised to it which is what happened with me when I was on Decapeptyl. I had to change to a different GnRH analogue after 18months, but that worked really well so maybe it's time to ask your gynae to try a different one.

What's your long term plan with your gynae? I, and so many others here, have felt that desperation you are feeling. Can you take some time off work until you feel better rather than resigning? I resigned from a great post in the middle of treatment when everything was going wrong and I have regretted it ever since.

You CAN sort this treatment to suit you, hang on to that hope. x

_________________
38 years old. Suffered PMDD for many many years. Had very successful treatment on GnRH Analogues and oestrogen only HRT. Had TAH + BSO 15/11/12 for severe complex atypical hyperplasia. Hopefully now completely symptom free permanently.


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 Post subject: Re: My story - Help and advice please?
PostPosted: Wed Sep 11, 2013 8:59 pm 

Joined: Wed Sep 04, 2013 7:15 pm
Posts: 6
Location: Lancashire
Thankyou so so much for replying to my post!! I cant tell you how greatful I am

I never thought at all about asking to change the injection to a different one, do you think this may help?

Also if I talk to my Gyn about the oestrogen only with 3-4 times a year progesterone...in what forms would i take both of these?

I am 3+ weeks into the tibolone now and still very snappy, angry, and irrational....and now having cramps and some bleeding.

At the moment im panicking and thinking of withdrawing treatment, but in turn that spins me into another panic of me returning to something even worse!

Lisa xx


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 Post subject: Re: My story - Help and advice please?
PostPosted: Thu Sep 12, 2013 7:34 am 

Joined: Thu Nov 29, 2012 5:00 pm
Posts: 79
Hey Lisa,

Don't panic. If you're not settled on the Livial now, it's entirely possible that you are reacting to it and should ask either your Gynae or GP to change you off it to maybe an oestrogen only tablet or gel or patch even. Of course, it is possible that you will settle on it but it's your choice whether or not you can wait and see or whether you want to action it now. The progesterone can be taken in tablet form 3 or 4 times a year. I'll get someone else to come back to you as I never used the prog so I'm not sure how it works but will find out for you.

It is definitely worth asking if you can try a different type of GnRH analogue as there are so many out there. My gynae was cynical about it making any difference at all but it did and he admitted that he was wrong and would remember it in the future.

Stay strong, your combination is out there, it's about finding what works best for you. x

_________________
38 years old. Suffered PMDD for many many years. Had very successful treatment on GnRH Analogues and oestrogen only HRT. Had TAH + BSO 15/11/12 for severe complex atypical hyperplasia. Hopefully now completely symptom free permanently.


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 Post subject: Re: My story - Help and advice please?
PostPosted: Sun Mar 15, 2015 7:35 pm 

Joined: Wed Sep 04, 2013 7:15 pm
Posts: 6
Location: Lancashire
Hi there,

I'm still here floating around....still trying to find a working solution for my PMS ;)

I'm still on long term prostap because im too flippin scared not to if im honest.....but yet equally scared about being on it long term too.

Does anyone else who takes these gnrh analogues feel a dip towards the end of a 3 month injection? I get really anxious, very weepy, depressed when im due another injection.

Unfortunately I DID resign from my position, and when i am 'well' I regret it immensely, but when I am like I am today, I absolutely dont believe i will ever live a normal life.

At my last gyn appointment, he said we have pretty much reached the best out come for me (bar surgery), and that maybe I need to come to terms that being 70% better is good enough, and to stop chasing something i may never find.

I just want to feel OK....not wonderful, just 'Normal' whatever that is.....just a little happy. He think i should be greatful for not feeling the intense rage that I suffered with pre-injection, and I am!!! But is it wrong to want to feel pleasure too?

Oh, and that reminds me.....I now have zero interest in sex! Poor husband doesnt even bother trying anymore.

So my current main issues are very low flat disinterested mood, and zero sex drive.....any ideas or suggestions welcome. I have been on an antidepressant for many many years.

Lisa x

_________________
Lisa x

Long Term Prostap Injection.....under review??
Fluoxetine 40mg daily
Pregabalin 200mg twice daily


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 Post subject: Re: My story - Prostap help and advice please?
PostPosted: Wed Mar 18, 2015 7:45 pm 

Joined: Thu Nov 29, 2012 5:00 pm
Posts: 79
Hi again,

I always got my injections at 10 weeks if on the 3 month jags and at 3 weeks if I ever had to take the monthly injections. They ALWAYS seemed to wear off early.

With regards to libido, are you on any testosterone at all? I think that tibilone has a testosterone aspect but it may not be enough so it might be worth discussing with your gynae if you can add in something like testogel or similar.

It's a struggle but I'm sure you'll find your perfect combo soon and you'll feel like you're living again.

Has anyone discussed decreasing your antidepressant at all? This can kill libido and also leave you feeling flat. another thing to consider maybe.

Good luck and keep chatting.

Jx

_________________
38 years old. Suffered PMDD for many many years. Had very successful treatment on GnRH Analogues and oestrogen only HRT. Had TAH + BSO 15/11/12 for severe complex atypical hyperplasia. Hopefully now completely symptom free permanently.


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 Post subject: Re: My story - Prostap help and advice please?
PostPosted: Wed Mar 18, 2015 10:18 pm 

Joined: Wed Sep 04, 2013 7:15 pm
Posts: 6
Location: Lancashire
Thankyou for your advice pmddsurvivor!!

I have just sent an email to my gynaes secretary to ask if he will send a letter of permission to my GP (he does my jabs now) to give every 10-12 weeks depending on symptoms, stupidly i hadnt even thought of that, so thankyou again, lets hope they agree.

Does the testosterone do anything to the womb? What benefits does it give, i've never heard of anyone using this, or what affects it has?

If nothing else, tonight i feel hopeful :idea: 8-)

_________________
Lisa x

Long Term Prostap Injection.....under review??
Fluoxetine 40mg daily
Pregabalin 200mg twice daily


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 Post subject: Re: My story - Prostap help and advice please?
PostPosted: Thu Mar 19, 2015 8:58 am 

Joined: Thu Nov 29, 2012 5:00 pm
Posts: 79
Hey,

Testosterone does nothing to the womb as far as I am aware. I took a tiny dose of Testogel every day and it made a MASSIVE difference to my motivation and general oomph and get up and go. I also felt more like me when I took it. Unfortunately it did nothing for my libido but I think a lot of libido is in the brain and antidepressants can affect it too. I have friends who have found their "perfect combo" through years of trial and error and are happy with their libidos so there is hope for us all :)

_________________
38 years old. Suffered PMDD for many many years. Had very successful treatment on GnRH Analogues and oestrogen only HRT. Had TAH + BSO 15/11/12 for severe complex atypical hyperplasia. Hopefully now completely symptom free permanently.


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 Post subject: Re: My story - Prostap help please? (Zoladex & now ESMYA)
PostPosted: Sat Dec 03, 2016 6:07 pm 

Joined: Wed Sep 04, 2013 7:15 pm
Posts: 6
Location: Lancashire
Hi everyone.....i'm still knocking about!

Lately my gnrh treatment has gone from 12 week injections, to 10, then to 8, and now 6-7 weeks between what should be a 3 month depot......also we tried to change me onto a slightly different molecule, so i went from prostap 3dcs over to zoladex 10.mg injection.....unfortunately this hasn't suited me at all. My gynae said that people either do brilliantly on the swap when the effects are wearing off, or they don't tolerate it well.....and I don't, bugger it!

So......my gynae has suggested a new drug, not licensed for PMS/PMDD but showing great promise, and as a pharmacy technician myself i was surprised that i have NEVER heard of this drug and even google searches show very limited results, except for it's use in fibroid reduction. It is called ESMYA (Ulipristal) and is a 5mg tablet that is taken daily and it has a similar effect to the gnrh injections in that it stops ovulation so no period, and no cycle.......i haven't started it yet, and would love to know if anyone has any information or personal stories regarding this drug, positive or negative I don't mind.

I love to read about peoples experiences of a drug, and the information on this is so limited, but my gynae is very positive about it, and states that he has wanted to try this med on me for the past year, but as i was functioning ok he thought it better to let me run with the treatment, but now i'm not so good he thinks it is the right time to change.

Let me know how you are all getting on......say hi!

Love & Hugs

_________________
Lisa x

Long Term Prostap Injection.....under review??
Fluoxetine 40mg daily
Pregabalin 200mg twice daily


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