a first hello

General discussion area. Just been diagnosed? Need to share your story and get some peer support?

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a first hello

Postby quackling » Tue Jan 07, 2014 4:37 pm

Hello everyone!

I am so happy to have stumbled across this website a few weeks ago and after looking around for a bit I've decided to post. I think I'm just hoping for some understanding ears, to find some tips while I'm going through the processes and perhaps to help people to avoid some of my mistakes so far! I don't really know where to start, but I guess for people to be able to help me it would be best to give you a full story, so apologies in advance if I bore you and thank you for taking the time to read it all if you do.
I am 30. I went on the contraceptive pill at 16, and since then switched between the combined and mini pills, the implant and injection. In 2011 I spoke to my nurse about the possibility of trying for kids in the not too distant future and she advised me to come off of the injection and back on the mini pill so that my fertility would return to 'normal' as sson as stopped taking it. Following her suggestion I did just that and in September 2012 I came off the pill and started the trying.
After reading the internet horror stories about periods not becoming regular for a while after coming off the pill I wasn't surprised that mine didn't and I certainly retrieved the memories of half the reason I'd gone on the pill in the first place; horrifically painful, heavy and long periods. Naively thinking that I'd be pregnant by Christmas I battled on.
Trying to be all prepared I went to visit my GP (let's call her Dr 1) and spoke about family planning. She commended me on giving up smoking (all part of the getting ready for a baby long term plan of 2011), said not to worry too much about the odd pint of Guinness and that although I was overweight, it shouldn't be an issue. Happy days! Onto the folic acid and thinking about baby names!
A year later nothing had happened. My periods were as heavy, painful and irregular as they were in my teens, the weight had again piled on and the spots were back with avengance. And I had completely forgotten about the hormonal outbursts! I was even crying at the news! I'd also started getting the chin hairs and the lip hair, and the downy chest hairs... Figuring this was what being 30 was all about I continued to ignore the obvious.
To put this into some more perspective, my two closest friends have PCOS. One, although told 20 years ago that children were impossible, has a beautiful 3 year old daughter now and the other has no desire for a family. I know the symptoms and the prognosis.
So, at the start of October I was visiting the gp (dr 2) for a urinary infection and mentioned that my cycle was still not back to normal. I can't really remember much of the conversation, but she suddenly appeared a lot less concerned about my pee. It ended in a referral for a bunch of blood tests and the first mention of PCOS. No indication of a process, a timeline, not much really.
So, blood tests were done and after the first set I rang to get the results. The receptionists words were as follows: "ooh you've got very high testosterone levels for a woman!" She I asked what I should do she replied to got to the next lot of blood tests and wait for the Dr to contact me. The next lot came and went and when I rang a second time I was told that I had been referred for an ultrasound (by dr 3) and an appointment would be in the post.
The ultrasound (external and internal) was done at the end of November. A lovely Dr (Dr 4) who was unable (due to some weird protocol) to tell me whether she found any cysts or not. 2 weeks later I was back in the gp talking to Dr 5. She had read none of my notes, but while i was there confirmed that from blood tests, symptoms and the ultrasounds i have PCOS. She also said she thaught that i was probably not ovulating and ended the appointment with the ' you must loose weight' conversation. I was offered a referral to a dietician, or diabetes pills to help with the weight, but I declined as I want to try independently first. she said she would refer me to the fertility specialists.
I've already gone on too long, so I may as well continue! The weight thing. I have always been overweight. My size 6 mum hastles me about it all the time while the other side of the family are perfectly happy as they (like I) are. When I was in my teens I tried a few different fad diets, with no impact at all. I lost a fair bit of weight after I left my ex and lived on my own, mainly on Guinness, red wine and cheese. But it came back pretty quickly and I have certainly never been under 12 stone. I am who I am, and I was happy with it.
So - that visit prompted the internet searches and finding Verity. It also prompted the low GI diet, the trips to the gym and the explainations, or avoiding them to various people, family, friends and colegues.
The appointment form arrived in the middle of December. With my 'right to choose' the hospital. After a bit of research I went for Preston. It was the closest appointment and I had heard good things about the hospital in general. I wish I hadn't been given the choice! When the appointment was confirmed I rang to see if I could request a female doctor. - I was supposed to hear that that wouldn't be an issue and to remind reception of my request on the day. In the meantime my partner went to get his little men tested although that is also a long story and we still don't have those results.
Christmas was hard. This new 'health kick' isn't easily explained to semi strangers pleading with you to just try a mince pie. But I stuck to it and I have managed to loose about half a stone.
On Jan 2nd we went together to the appointment (Dr 6). Here is were the real issues start...When I asked at reception about the female doctor I was haughtily told "this is a specialist department. We do not have a female doctor." This was followed by a nurse who was shocked when I said my last period was in November and told me I'd have to do a pregnancy test. Then an incomprehensible doctor, who half way through the appointment said that he 'suspected' that I have PCOS, lectured me about loosing weight, ignored me trying to say that I had been trying. Said that he did not have access to my notes, ignored me trying to tell him what I had already had done. Then gave me two blood test forms (with writing as incomprehensible as his spoken language), information about a HyCoSy scan and an appointment form.
The blood tests were for loads of things (done yesterday on day 4 of my cycle as requested), I have no idea why I need most of them and no explanation was forthcoming. My next appointment there, but not until mid July, when I must have lost another 2 stone , or they will do nothing... Not that anyone has said what they will / might do if I have lost the weight.
I feel like I have received no support, no understanding and no explanations as to what is going on (or might be) from professionals. No one seams to care for me as a patient at all!
Thank goodness for places like this where I can post a rant!
If you really did read all of that then thank you!!!
quackling
 
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Joined: Tue Jan 07, 2014 3:25 pm

Re: a first hello

Postby Hols969 » Tue Jan 07, 2014 5:50 pm

My goodness that was a long, it made me chuckle in places and sad in others.... Its normal procedure for them to do a pregnancy test when you first get referred as they have to rule that out. What is your BMI currently, NHS areas vary but can be quite strict on this (even though it is proven to be a load of rubbish). One thing I would suggest diet wise is making sure you eat little and often. The diabetes drug that you would have been offered would have been metformin probably and there is very differing opinions on whether it does help. Yes it can help you lose weight but normally it is down to the horrible side effects and spending half your time in the loo, which is no great joy!! Unfortunately they also seem to be obsessed with periods, I had relatively regular ones but didn't ovulate, they don't seem to grasp sometimes that a period doesn't mean you are ovulating and if you have none it doesn't mean you aren't ovulating. Oh for someone who actually really understands PCOS (it is why the charity was formed almost 20 years ago). When I was diagnosed 20 or so years ago it was a lifeline as no one knew about it then, unfortunately it still seems to be the case even though it is pretty common. It is pretty rare to get a female fertility dr, Ive never had one, it does tend to be men. I would go back to your GP for a follow up appointment and say how disappointed you were with the 'service/explanation' received as well.

There are a variety of diets you can try, I tried weight watchers but got stuck after a stone and then couldn't shift any (I did have to eat 2 points below the recommended amount to lose anything, which was advised by verity at the time), I put on 3 stone when I came to try for Noah, which took 3 years and then I found the Norah Lane diet and lost the 3 stone (2 within 3 months), that last stone has crept up on again but Im pretty much maintaining now and not increasing so that's good, will try and shift it for my hols at Easter! So I love the NL diet but it doesn't suit everyone but fits in well with my lifestyle. Cut out all the white stuff as well as they are bad from a pcos point of view.

If your BMI is over 30 they normally wont normally prescribe clomid, it sounds like they are looking to check your tubes, which is good as clomid has a time limit of how many cycles you can have it for and if your tubes are blocked it would be a waste of it.

I would focus on July and losing that 2 stone, it is easily doable (the motivation to keep going is the struggle sometimes as weight loss can be a bit slower for us). I would chase up on your partners sperm tests and get him on the Boots Vit C and zinc tablets, my hubbies sperm was terrible even tho his diet was good, didn't drink, smoke etc so that was a bit of a shock, but they had improved by 100% within the year after eating anything with zinc in it and taking the Boots tablets.

Good luck, it can be a long road sometimes but it is pretty rare not to conceive because of PCOS, it just takes us longer but makes us appreciate our children more I think (and makes us more patient as well!!)
Unless stated, my views do not represent the official views, position or standing of Verity
Hols969
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Re: a first hello

Postby xLivingDeadGirlx » Tue Jan 07, 2014 6:03 pm

First off, *hugs*
You seem to have been through a lot! It's such a shame that the NHS took that long and how you've been treated! I think a lot of the ladies went through that so they can sympathise.
Chin up though, there are a lot of ladies that have conceived even with PCOS. They always give me hope.

I wish you luck with everything and I hope to hear some good news soon :) Always hear to listen if you need to rant or a shoulder to cry on.
xLivingDeadGirlx
 
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Joined: Mon Jan 06, 2014 6:25 pm

Re: a first hello

Postby quackling » Tue Jan 07, 2014 6:19 pm

Gosh! Thank you both... I wasn't expecting replies really,let alone that quickly! I shall look up more on that NL diet, I'm already off any processed food (although that's not been a huge change) currently cooking up some sweet potato and tuna falafels, minus the flour,and we'll see how they come out!
I think I'll see how the next few months go until I pester another Dr at the health centre. I was just reading that sometimes lowering that bmi below 30 can trigger everything to run more smoothly, so fingers crossed. Mine is currently 35, which I didn't think was that bad, hey ho.
I'm not expecting a quick fix, and I am willing to work for it and I know that there will be others going through it much longer and having a harder time than me. I'm very greatful for the support though. :)
quackling
 
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Joined: Tue Jan 07, 2014 3:25 pm

Re: a first hello

Postby Mrs_T » Wed Jan 08, 2014 3:11 pm

Sorry to hear you've had such a difficult time, a doctor clued up on PCOS in the NHS seems to be a rare thing indeed! Sounds like you're on the right track diet wise, I cut out processed food last June when I started the Harcombe Diet and has made such a difference, not only from a weight loss perspective but my health in general and my pcos symptoms have massively improved too. Also i've found taking certain supplements helpful too, particularly magnesium, and a combination supplement called sucroguard. I've recently been reading about inositol too which there is a lot of research backing up it being beneficial for PCOS. If you're on facebook there's a good group called PCOS awareness UK, which also has lots of other useful info x
Mrs_T
 
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Re: a first hello

Postby quackling » Wed Feb 12, 2014 3:44 pm

A quick update... I've now lost about 1.5 stone, and my last period was as normal as I could image one to be. 28 day cycle and 5 days long. Still heavy and painful, but you start to wonder how much blood loss and pain IS normal! I've just come back from the hycosy where the hospital staff were wonderful. Really supportive, positive and willing to tell me what was going on. The dr said that the cysts are still there, but that it didn't look too bad (I have taken that as meaning it's getting better) and more Good news - my tubes are all clear. Under the advice of a friend I've also ordered some cheep ovulation tests from eBay - i've got a few months till the next appointment with the consultant so it's time to get down to trying - here's hoping the diet has made a difference :)
quackling
 
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Joined: Tue Jan 07, 2014 3:25 pm

Re: a first hello

Postby Hols969 » Wed Feb 12, 2014 4:30 pm

That's great news well done you, remember the ovulation tests can be a bit hit and miss for us so keep at it even if it says you aren't ovulating as they are often wrong !!
Unless stated, my views do not represent the official views, position or standing of Verity
Hols969
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