Back to Square 1 - 16 years later!

[dinogirl2008]

I started on Zoladex in April 1997, I had such heavy periods, twice I woke up in A&E on blood and drips. Was told by many Consultants that I had polycystic ovaries.......but everytime they did any investigations they could not find anything. I was even told by one "male" to have a baby, that would sort me out!........ Hence to say I was not impressed. I gave up getting sorted and put up with it loosing days and weeks of my life due to this.

I eventually met a new Consultant in the form of Dr Kate Gutherie, she did an MRI and told me I was physically fine. No scarred tissue, damaged ovaries, tubes etc....... But she said she knew what was the problem.....I was alergic to my hormones......

I thought she was having a laugh at my expense.......

She put me on Zoladex injections and for the next 16 years I was "cured".......................

I can only be on the drug for this length of time and now I have been off it for 13 months, I am in the middle of my first period...........ITS HORRENDOUS. I have been off work, loosing way too much blood, racked in pain.

Thank god I got an appointment to see my New Consultant (in new part of the country now) today, I am going to ask for a full hysterectomy as I cant go through this every time.

I am 40, I have 1 son who is 15 years old....... yes you probably guessed it....I got pregnant on Zoladex....Don`t ask me how, no one knows, not even the Consultants.... I started the drug in April 1997, got pregnant in August 1997 and did not stop the injections until December 1997 when I had a scan to see if I had an abscess in my womb......

I was 16.5 weeks pregnant when I found out.......I had a very short pregnancy as he was born 3 weeks early = 4 months of being pregnant....he was born no issues to worry about and he is a fine young man now.

I hope my experiences and my story can help comfort anyone who is going through similar problems I did.

If anyone wants to chat, please drop me a reply.

[Impatient]

Have i understood this correctly? You have been on zoladex for 15 years?

The manufacturer recommends only 6 months maximum in a life time for benign gynae conditions. If what you say is true I am flabberghasted.

[dinogirl2008 in reply to Impatient]

Yes, you are correct, when I started zoladex, my plan was a hysterectomy ASAP, but due to other health complications I have not got it done yet.....and all the time I knew I had 15 years max. That was what I was told by my consultant, and it's been great.

[Impatient]

I am amazed you managed that. I could barely cope with 4 months!!

You must have an awesome constitution.

How much bone density did you lose after all of that length of time if you don't mind me asking? And how frequently were the docs checking scanning your bones?

[dinogirl2008 in reply to Impatient]

Dear Impatient, It was hard to start with, the night sweats and irratibility were the worse, but compared to years of haemorrhaging and pain, I could and did cope with it. Re-Bone Density - thankfully I have "heavy" bones to start with, so any loss was not a big issue for me. I had scans every 3-5 years.

Hope this helps.

[CurlyWurlyAmy]

Hi dinogirl, thank you for posting your story. It has resonated with me a lot. I have always been very tempermental with my mood swings, 8years ago when u was pregnant with my daughter i spent the first part if my pregnancy in hospital because i was constantly being sick, so much so that i couldn't eat or drink and in the end the only thing i was bringing up was blood, the pregnancy hormones trigger a temporary thyroid problem and i went to a size 10 to a size 20, as soon as i gave birth the weight started dropping off gradually each month and i returned to my normal size.

Two and a half years ago i started with pains, Endo pains and also menopause symptoms - i was 29 years old at that time. I had scans, everything fine, i have constant hormone level checks all are fine, i had a lap, i have mild Endo patches and they were removed. But i continued with the pain and the menopause symptoms and always have had the constant mood swings since i was a teenager.

I must point out also that i have perfect periods, they start on the day they are supposed to, last four days and are standard, never in my life have they been out of the ordinary

I was put on cerazette and i lasted a week because they reacted with me the way my pregnancy did and i was sooo sick.

last month i was given my first prostap injection and within 48 hours i was a changed person. I literally could have done cartwheels and still could! It feels like a big heavy dark fog has been lifted off me with immediate effect. My pains have gone, my mood swings have gone, i feel so energised and feel like a new person. because I feel so great i have started eating really healthy as opposed to comfort eating which i used to do cos i felt so rubbish, yes i have menopause symptoms but i already experienced them before anyway and they are no big deal in the grand scheme of things. I am not taking hrt.

but anyway, the whole point of my post is, after my first week of prostap it dawned on me....could i be allergic to hormones? I thought those exact words to myself but didn't know if this was even possible! I believe this is what is happening to me too. I have decided that my next step is a hysterectomy although the past two weeks i have been thinking to myself that it is a shame i cannot stay constantly on prostap! This is a discussion that i will have with my consultant now

Impatient you need to stop worrying so much about bone density, oestrogen isn't the only thing that helps to prevent bone thinning. My consultant and gp said that healthy eating, regular moderate exercise and certain vitimins alone will help to prevent osteoporosis and heart disease. My mum went through menopause at 37, she couldn't have hrt and now 20 years on she looks and feels younger than ever and her health is absolutely fine, because she took good care of herself. Everyone is different with menopause, some people find it a breath of fresh air, others just cannot cope with it, we are all individual.

dinogirl i hope for you now that you will be able to have a hysterectomy, imagine no more injections and just permanent good health i really wish you the best with your journey now. Maybe there might be a new treatment for allergy to hormones that has come out since you started zoladex? Xx

[dinogirl2008 in reply to CurlyWurlyAmy]

Dear CurlyWurly Amy

I really feel for you and what you have gone through.

I would suggest you mention the alergic to hormones to your consultant, it could be a possibility.

Thanks

[dinogirl2008]

Just an update...... Went to see my Consultant, who turned out to be on Study Day, the only day she does a clinic! typical.... Saw her Registra....everything I asked her, I got told "I will have to ask Miss Omar" grrrr nearly shouted whats the bloody point of the appointment! but didnt.

Did get some meds to stop the haemorrhaing and the pain and three days later I am better, but still in pain (but less).

I am now on the waiting list for scans and operation.....

I am also waiting to find out if I can go back on the Zoladex for 6 months until I have the operation.....

So there is a light at the end of the tunnel, but its a very long tunnel!

[LittleMissManx Moderator]

Hi dinogirl

Thanks for your post. It makes interesting reading especially for me as I am also facing the probability of being on Prostap for the next few years -at least until the age I would reach the menopause naturally.

Like Impatient says we are told that GNRH analogues are for a maximum of 6 months usage. I had 8 months worth or Prostap in 2010 to see how my body responded and I was like a new person. My consultant then had no uncertaintly about me undergoing a hysterectomy and neither did I as I thought I would feel as good as when on Prostap.

Sadly for me I had ongoing pain once the post-operative discomfort had settled down and I was back fulltime at work. I also moved house and changed jobs so had a pretty stressful 12 months. However despite knowing I had no ovaries or womb left I had constant pelvic pain. I put u with it for 12months but eventually decided I had no choice but to mention it to my new GP who referred me which meant a new gynae taking over my case.

In Dec 2012 I had an exploratory lap where endo was removed as well as ovarian remnant tissue. When I saw the consultant for follow-up he said he hoped that the excision would have removed the pain but it was slowly and surely coming back. He admitted he was running low on ideas as to what to next so I asked if I could start on Prostap again as I knew that was one treatment which really helped me.

This was in February 2013 and I am continuing to have regular injections with good results. My consultant has written to a Professor in the UK about being on Prostap long term and I will get a copy of that reply at my next appointment in October. I am aware of the risks on bone density but it is proposed that I have regular DEXA scans to monitor this.

I feel your frustration at not seeing the actual consultant as she was on study day. Was this a one off as it seems strange her having her outpatient clinic on the same day. No wonder you left frustrated and without any answers.

When will you find out if you can have Zoladex until your operation date? I hope you got booked in for another appointment with Miss Omar so can finally benefit from her expertise?

Despite the long tunnel you sound positive and upbeat which can only be a good thing.

Take care

Caroline, x