Coming off PCOS treatment at 53

A place for older ladies to discuss the issues affecting them and share hints and tips relating to PCOS in later life

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Coming off PCOS treatment at 53

Postby JennyC » Thu Nov 08, 2012 10:14 pm

There is VERY little known about PCOS and the menopause so thought I would share my experiences.

I was diagnosed with PCOS at the age of 25. At the time I was slim, had periods nearly all the time and had terrible acne. I had headaches, was dizzy, felt depressed and as if I was only half there. It was diagnosed after I sat in an endocrinologist's clinic and refused to move until they'd done a blood test. I was eventually put on Brevinor (the Pill) and 50mg cyproterone acetate/day for the first 10 days of my cycle. I cut the latter down to 25mg/day in my 40's.

Was dreading the menopause and the medical profession's response to it. I was not disappointed.

At 51, my male GP suggested I came off the Pill. When I started to express my concerns, instead of discussing this with me and finding out what they were, he bizarrely started shouting at me that he was in control of me and my medication and I had to do what he said. I smiled and nodded and then sacked him the minute I got out of the room. No-one controls me or my body. I saw a more sympathetic female doctor who was happy to continue prescribing my medication however on the next visit I gathered the male GP had scribbled all over my notes saying I should come off the medication and she was reluctant to continue prescribing. I sacked the practice and went elsewhere after a lot of research. This man was not going to control me. It's surprisingly easy to change practices these days.

The new GP was very good, sorted out my bad back, dealt with my hereditary hearing problem and then I needed a new PCOS prescription. Rather than discussing my concerns he got all high and mighty about my stopping my PCOS medication. Really they're only ovaries, let's not get ourselves in too great a state about this. 50% of the population have them, they're not weird. However this time I was prepared. I'd e mailed Adam Balen and attended a Society of Endocrinology meeting in Leeds to hear him talk about PCOS and the menopause. It was brilliant. Apparently the symptoms of PCOS continue after the menopause due to increased androgen levels. However there's no need to continue taking oestogen. Ah ha that's why I go all spotty again when I stop taking the cyproterone acetate.

I then attended the Verity meeting in Cardiff 2011 and again there was a very good speaker who said the same thing. I talked to her afterwards and she suggested packing in the pill and continuing to take cyproterone acetate as normal.

Well my last 6 months supply of PCOS medication was nearly up. Did I go and have a predictable argument with my GP...ooooh ovaries so scary.... or did I take matters into my own hands. Own hands I think!

So on Saturday after 28 years, I didn't start my new pack of Brevinor. I haven't had a period for 3 years, went through a phase of getting hot flushes and feeling hot in the mornings which is now over, so figured I was probably post menopausal. I did however take the Cyrproterone as usual. What happened:

Saturday-fine
Sunday-fine
Monday- headache
Tuesday-headache, bad enough to take aspirin which sorted it out
Wednesday-very mild headache, felt a bit weepy but not too bad
Thursday-very mild headache, felt a bit weepy but not too bad. No acne has appeared hoorah!

I will try and fill you in and what happens next.

However I have done a bit more research during the week.

It seems that if the GPs bothered to talk and listen to me about my scary ovaries they could do a blood test at the end of the week I'm not on the pill and see if I am actually menopausal. This would be a great help as I could stay on the Pill if not. A scientifically informed decision could be made.

There are milder forms of the Pill which would mean I wouldn't have to go cold turkey.

There is HRT. Oh yes they are scared of that, however at Leeds at the Society of Endocrinology meeting, that well regarded group of scientists, they said the study that showed HRT to be dangerous, has been discredited. In fact they were saying we could stay on the Pill until we are 56. Hmmm shame it hasn't filtered down to the GPs.

So I'll try and keep you informed of my progress. So you know I'm not talking utter twaddle, I'm a biologist at the University of Oxford, apparently conducting my own research project on an n of 1!! I haven't found anyone else who has shared their experiences so I'm happy to share mine with you as a start, to help the pool of knowledge grow.

The next update will be brief now you have all the background.
JennyC
 
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Re: Coming off PCOS treatment at 53

Postby Hols969 » Sun Nov 11, 2012 10:03 pm

Thats brilliant of you Jenny. I am 43 and still on the pill and dread the day when someone will say I have to come off it. I dont smoke and am only a bit overweight and so far so good but there is always that thought at the back of my mind. I had thought about HRT (as its similar to the pill I thought anyway) but obviously not that close yet.

WOuld you consider doing an article for In touch perhaps once you 'get through it'.

Good luck, I hope it is smooth going...
Unless stated, my views do not represent the official views, position or standing of Verity
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Re: Coming off PCOS treatment at 53

Postby beaglelady » Sun Nov 11, 2012 10:45 pm

the hrt studies were flawed. there is no extra risk if you take it below 50 or for five years after. estrogen only hrt has also shown to be slightly safer. i could not imagine not being able to take it.
had the lot pcos endometriosis, adenomyosis and fibroids. now in early surgical menopause.
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Re: Coming off PCOS treatment at 53

Postby JennyC » Thu Nov 15, 2012 8:22 pm

Week 2 of coming off Brevinor.

Things pretty much the same until Monday except I was feeling like I had a whole load more get up and go. Yey!

Monday: No more headache (hoorah) and took the last 25mg cyproterone acetate of the usual 10 day pack.

Tuesday: In a very bad mood :evil: . If anyone was going to cross me today they would either be torn apart limb by limb or find me bursting into hysterical sobbing. It wasn't until I was in a changing room at lunch time where I had retreated for some retail therapy that i developed a very specific craving for Marks and Spencer Biscuit cake. It was then that a distant bell started ringing and I realised I felt how I used to when I had PMT but without the stomach cramps. Not surprising really as like in PMT the levels of oestrogen and progeseterone had bruptly dropped. How long was it going to go on for? Ate all sorts of things that are definitely not in Colette Harris's PCOS diet book. Oooops.

Wednesay: Headache back again, eventually relieved by ibuprofen and more ibuprofen. Not in the best of moods but loads better than yesterday. Feeling a bit weepy.

Thursday: Headache, not in the best of moods and feeling weepy but manageable.

No sweats, no vaginal dryness, no symptoms of the menopause except perhaps being a bit dippy.

Not sure what to think. Will keep going for another 2 weeks and see if the headaches and weepiness are due to coming off the Pill after SO long. I'm hoping they will settle down. If not I'll think about HRT.

Holly i would be happy to write something for InTouch when I've gone through whatever this is.

Beaglelady.......big, big hugs to you xx
JennyC
 
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Re: Coming off PCOS treatment at 53

Postby JennyC » Sat Nov 24, 2012 10:05 am

Week 3 of coming off the Pill at 53, still taking 25mg cyproterone acetate for the first 10 days of my "cycle".

Feeling loads better! PMT like symptoms only lasted 3 days and headache has more or less gone. Seem to have more get up and go than I have for years. :P

Long may it last.
JennyC
 
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Re: Coming off PCOS treatment at 53

Postby Hols969 » Sat Nov 24, 2012 9:16 pm

Yes, fingers crossed.
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Re: Coming off PCOS treatment at 53

Postby JennyC » Sat Dec 01, 2012 11:01 am

Week 4 of coming off PCOS treatment at 53

Well this week has continued to be mainly good. Was exhausted last Sunday, slept for 10 hours and could have curled back up under the duvet in the afternoon. Not sure what that was about. Also had one tired day during the week but am putting that down to the floods and it taking 2 hours to drive the 7 miles into work. Have had some very mild stomach cramps but nothing to take any notice of.

Otherwise still have clear skin, no periods, a healthy sex drive, no more headaches and generally more energy. So coming off the Pill is going well.

The emotional impact is interesting. In 4 weeks have gone from a carefree woman on the Pill to a probable post menopausal woman. Ah that's why nature takes things more slowly. However am telling myself not to be ridiculous and be very thankful that I still feel so well!!

Just started taking 25mg of cyproterone acetate which I will continue for the next 10 days. I'm not giving up everything all at once as a) too scared b) need to know what the effect of just coming off the Pill is first c) Adam Balen and speaker at Verity meeting last year think it's a bad idea as androgen effects of PCOS can get worse during the menopause. Cyproterone acetate should help with that.
JennyC
 
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Re: Coming off PCOS treatment at 53

Postby JennyC » Sat Dec 08, 2012 10:30 am

Week 5 of coming off the Pill.

Have been taking 25mg cyproterone acetate per day all this week as recommended by medical doctor speaker at last year's Verity meeting in Cardiff.

Have felt fine all week. Feel as good as when I was taking the Pill only I have more energy. Fantastic!
JennyC
 
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Re: Coming off PCOS treatment at 53

Postby JennyC » Sat Dec 15, 2012 6:11 pm

Week 6 after coming off the Pill

Another week of feeling great and having more energy. Perhaps the female body grows weary of too much oestrogen coursing round her veins and we feel better off the Pill at this stage of life........?
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Re: Coming off PCOS treatment at 53

Postby JennyC » Fri Dec 21, 2012 11:10 am

Week 7 of coming off the Pill at 53

All still going well. Feel fine, no periods, no acne, no hot flushes. Think may hair may be a little bit thinner.

I have been stressed off my head, having been told my job was coming to an end. I mention this as my PCOS was supposed to be stress before I was diagnosed 28 years ago. I was in my 20's, living away from home and having a ball before being smitten down with PCOS symptoms. I am stressed now and have no symptoms so if you come off the Pill and get prolonged PCOS symptoms, whether you're stressed or not, you may need to continue treatment. Don't let those doctors fob you off :roll:
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Re: Coming off PCOS treatment at 53

Postby Hols969 » Wed Jan 02, 2013 4:14 pm

How have things been the last few weeks Jenny?
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Re: Coming off PCOS treatment at 53

Postby JennyC » Wed Jan 02, 2013 7:55 pm

Week 8 of coming off the Pill at 53

All continuing to go very well.
JennyC
 
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Re: Coming off PCOS treatment at 53

Postby JennyC » Sat Jan 05, 2013 9:33 am

Week 9 of coming off the Pill and week 1 of stopping cyproterone acetate

As things were going so well with coming off the Pill, decided to try coming off the 25mg/day cyproterone acetate I was taking for the first 10 days of my "cycle".
Whenever I've tried doing this in the past I've developed a headache above one eye by Wednesday. This time Wednesday passed with no problems. Hoorah! However on Friday I developed a more generalized headache, felt weepy, tetchy and fragile. Now Saturday morning and I've woken up with a headache. I'll tough this out for the time being and let you know how things have progressed next week. Now where did I put the paracetemol......
JennyC
 
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Re: Coming off PCOS treatment at 53

Postby JennyC » Sat Jan 12, 2013 6:18 pm

Week 10 of coming off the Pill and week 2 of stopping cyproterone acetate

By Monday the headache had gone. Hoorah! Have felt fine all week and have had even more energy than normal. Holly to answer a previous post of yours about anything improving as we get older, maybe coming off hormone medication in our 50's is a good thing and we get a boost to our energy levels. What a wonderful thing that could be.

I'll keep you informed of progress.
JennyC
 
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Re: Coming off PCOS treatment at 53

Postby sasha_ray » Sat Jan 12, 2013 8:44 pm

Hi Jenny,
I've been reading your thread with interest. I'm 34 and hope to be able to keep taking dianette for many years to come - but obviously there will come a day when I will have to go through what you are now. So its very helpful of you to be sharing this journey with everyone on here. One thing I wanted to share with you is that when I saw an endocrinologist last year he explained the science of dianette to me (dianette being the combined pill that uses cyproterone acetate as the progesterone). He said that the reason dianette takes at least 3 months to begin working for acne (longer for hirsuitism - 9 months) is to do with the cycle of hair follicle cell regeneration. Something to do with them taking 12 -14 weeks to regenerate(and then in continuous 12-14 week cycles), so that after that time- with the anti androgen cyproterone acetate in your system, they begin to respond differently to testosterone and the skin is less greasy. And this is also why you see a continuous improvement in acne on dianette. So, given that your treatment was cyprotetone acetate itself I wonder whether it will be at the three month stage of being off it that you may begin to see a difference in the condition of your skin. Lets hope not - but I will be fascinated to find out. Lets hope that in reality we just all eventually 'grow out' of it! This is such an interesting thead - keep it up!
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