[Jules4Yans]

Hello,

Well my rheumatologist suspects that I have SLE but is still investigating it. She has put me on Plaquenil though.

A few years ago I was also diagnosed with Polycystic ovaries. I had many cysts on my ovaries and a hormone imbalance. Some of the symptoms include irregular periods which is the main one. When I say irregular I mean that I'm turning 19 shortly and I have not had more than 10 natural periods. The longest I have gone without a period is for 19 months, which I would say is too long but my doctor didn't really care about that and refused to refer me to a specialist. Recently I went for another ultrasound and the woman told me that it doesn't look like I have Polycystic ovaries which upset me because I have been wrongly diagnosed.

I went back to my doc wanting an explanation and he said that my irregular periods could be due to my connective tissue disease. Could this be true??? Seeing as I have never had a regular period and only started to feel bad a year ago with a connective tissue disease, I'm questioning it.

So if anyone could help me out, I would be very grateful. And sorry for the long winded story.

 

[Clare.T]

Hello Jules
It seems unlikely to be the lupus to me either, although it can cause menstrual irregularities, partly because it is much more likely statistically to be PCOD or PCO syndrome as it also seems to be called.
Your GP's attitude seem most unsatisfactory to put it mildly. I don't know if GP's would routinely deal with PCOS. Do you mean he has accepted the radiologist's view that you don't have PCOS after all ?

I wonder what sort of treatment and supervision you have been getting all these years or even if the diagnosis was sound. He doesn't even sound caring - after all this could have serious bearings on your general health as well of course childbearing and fertility.
I wonder what your rheumy will say about it.
I think you are entitled to a gyny check up in the circumstances. I would want one.


http://www.netdoctor.co.uk/womenshealth/facts/pcos.htm


Good Luck

Clare

 

[halfpintfl]

Hi Jules, your Rheumy has already started you on Plaquinel, which is most important. At least you have begun the first med that we take, and this will leave her time to continue her investigation. But as far as your periods go, I think you should deffinatly get a second opinion, you really need one. Let us know and take care.

 

[LolaLola]

Hello, my periods have always been wildly irregular, just the way it is with me,no gynae problems. However I feel you deserve a proper diagnosis and explanation for your problems. Maybe you will need to change Doctor, many of us have had to, so don't feel bad if you have to change.

My Daughter who is 17 also has Lupus,but her periods are reasonably regular.
x Lola

 

[Joandublin]

Hi Jules

I just wanted to add my two cents worth. I think your GP is acting disgracefully in not referring you to a specialist for your menstrual problems Such irregular periods demands further specialist investigation.

I hope you can convince your GP to give you a referral. You might have to take a tough line on this one. Remember its your body - not his

If he refuses to refer you I would do my best to find another GP that will.

When do you next see your Rheumatologist? Mention your periods to him/her and see what they have to say. They may very well write to your GP and ask for a gynae referral.

The very best of luck
Joan:rose:

 

[Lily]

Hi jules,

For what it's worth I also think it's absolutely appalling for your GP to refuse you a Gyn referral!! He's obviously not going to sort this out and you need some answers and possibly treatment - he gets the plonker of the month award

I would firmly insist on a referral and as Joan said if that doesnt work then it's wise to find another GP.

sending hugs,

Lily

 

[Karly1964]

Thought I would throw my two cents into the mix, I have been diagnosed with polycystic ovary syndrome, I went without a period for ten years. I had an exam by ultrasound that said I had a cyst, but the blood tests never came back confirming the diagnoses that way, my nurse practioner started me on metformin, or glucophage and that has set my periods straight. I think sometimes the disorder can be more ative or less active. The ovaries are cystic in character anyway, since that is how an egg gets released. But if there is any question about the diagnoses then you should be allowed to or referred to see a gyn. doc just to get things figured out. I hope things get worked out for you very soon. Karly:there: :flower2:

 

[Jules4Yans]

Update....

Thank you everyone for your kind words and support.

I'm sorry I haven't been able to respond, my net was on the blink and I'm rather busy at Uni.

Anyways, my doctor is very annoying but I feel guilty if I did want to change because he has known me since I was 10 or something. It's so difficult because he doesn't really understand my worries or concerns. Especially that I could be infertile.

I'm actually going to see my GP tomorrow because the Plaquenil has reacted badly with me. I mean like constipation then diarrhea, feeling sick and really bad wind and bloating. He gave me medicine to help but I don't think it's done much. So I might have to stop the Plaquenil . That makes me sad because I really do want something that will help me. I feel like no-one in my life fully understands what I go through because of the pain that I experience in my knees. And now more recently my ankles. Oh its so hard.

But again thank you for all your support

Jules xxx

 

[Clare.T]

It's your choice - do you allow yourself to be neglected and maybe all your future hopes spoilt because of one lousy doc. If abuse is defined as misuse of power over a weaker individual, then he is abusive and most probably not only you.
I know it is an effort to make major changes in life, to dump the familiar, and that it is often very difficult to change GPs in the UK. Perhaps other people in your family are his patients too.
Think of it as a business deal, the car mechanic who doesn't do the job, the bank that cancels your debit card when you go abroad on holiday because the fraud dept detects a few overseas withdrawals, so you are stuck without cash in the middle of Arizona.

You deserve the best you know. We need to do ourselves favours because other people seldom take the trouble

Hugs
Clare

 

[Lily]

Hi Jules,

I must say I agree with Clare on this one, there is no point 'feeling guilty' if you changed GP's. Clearly he isn't looking after your interests so really you are the only one left to look after them. It's no skin off his nose if you are unable to lead a life full of some quality (and that includes having a family of your own!) As soon as you walk out his door you aren't his problem, he moves on to the next patient and probably treats them with similar contempt.

On another note, I am wondering how much Plaquenil the Rheumy put you on? Was it 400mg straight up?

If so, then many of us have had to start out slower with 200mg and then maybe increase it to 400mg after some time. This gives your body time to get used to it. Lupies and people with Sjogren's too can have trouble starting any new meds and are often sensitive to them. So starting slow and working your way up is one way to tolerate it.

The side effects you list are quite common but usually fade after a couple of weeks, if they don't then you need to have a more gradual introduction to the med. Perhaps even taking it one day, skipping the next and taking it the following day. Your Rheumy should be able to verify/discuss this with you, I doubt the GP will have much experience with this med and yes he probably would advise you to stop it.

Stay strong, we understand what you are going through and how vulnerable you feel right now, but we will try and help if we can.

love
Lily

 

[Jirel]

Jules, Please, please, please go to a GYN - or to a doctor that will refer you to a gyn. With the irregular periods you could be building up the linning in your uterous. That would eventually cause problems, the least of which would be immensely painful cramps and horrendous bleeding. I know because I went through it - but my problem was that I didn't go to a doctor not that they ignored my problem. I finally solved it through several visits with a GYN.

 

[Jules4Yans]

Thank you everyone for your support. I really do appreciate it.

In answer to your question Lily, I was put on 200mg...so thats once a day. I went back to my doc who said that I should keep taking my Plaquenil until my next appointment.

All of you are right, I should change my doc....I just need to build up the courage. Easier said then done.

But once again thank you!!

Jules xxx

 

[purplesnowflake]

Hi. I had to change GP because he said my symptoms were all in the mind and to take prozac. I was amazes how easy it was. I just went to receptionist and said I wanted to change GP. A form was filled in and I had a new GP in the practise. I never had to see my old GP again and no awkward questions were asked either. It may be the same at your practise and it is worth it. I felt quilty too because he was my GP from childhhood and my family thought he was great. You have to do whats right for you.


Good luck and have a hug.

 

[Lily]

Hi Jules,

Oh so you are only on 200mg are you still having as many problems with it and when do you back and see the doc next? You mean the rheumy?

love
Lily

 

[Jules4Yans]

I am definitely considering changing my doctor...definitely.

Lily in terms of your question....I am still having the symptoms but its not bothering me anymore because I am home most of the time now. Before I was at uni and I had a lot of trouble with it because there were times when I thought I had to run out of my lecture which sat 200 students because I was feeling sick. I didn't thank god but then found out that the sickness was actually because I had loose bowels. It is rather embarassing.

I will be seeing my rheumy doc in May but I might bring the appointment forward. I'm not too sure yet.

Hugs to all

Jules xxx

 

[ALWIN]

Hi Jules

Just thought I'd drop a line to sympathise with the plaquenil side-effects. I know nothing about gynae problems.

I was fore warned about the possible side-effects, but that did not help much when I too had to FLY to the lavatory very quickly on many ocassions during the first 4 - 6 weeks (I THINK that's how long it was - can't remember now because I no longer have ANY side effects at all.) On one ocassion I even had a little cry because i thought i was becoming incontinent. Might make me laugh now, but it didn't at the time.

The wind took a little longer to settle down, but the nausea went at the same time as the ruuunnns!! I hated it. My abdomen used to swell and you could hear all the 'bubbles popping' ( if you know what i mean). I learned to take my anti-inflammatories and a drug to protect my stomach from the anti-inflammatories AT A DIFFERENT TIME to Plaquneil too - this reduced the side-effects no end. I started to take each drug 1-2 hours apart, then re-introduced them one at a time to see which it was that made things worse. Now I take Plaquenil and aspirin in the morning with breakfast (you should have food in your stomach or your gut reacts worse), then my other stuff at lunchtime.

I'm still a bit of a farty pants, but all is well. It seems common amongst many of us on the site.

Importantly...

I have been taking plaquenil 400mg for about a year now and cannot remember when I last felt so well. It has been marvelous for me. I am not ill or tired at the moment. I have been more or less pain free (except for a bad back) since just after christmas.

I used to hope for 3 days of health, and cannot bleieve what is happening right now. Long may it last, but from my perspective, even if i had a flare next week, these 3 months have been worth the few weeks of side-effects. i too considered stopping them - first because of the side-effects, then because they took so long to work.

I am glad i gave them a fair crack of the whip.

Good Luck Jules

 

[Jules4Yans]

Hey Alwin,

I'm so glad for you that after all the problems there is a positive side for you. I am in total agreement with you....I considered stopping the Plaquenil and my GP even said I should but I said No! I am continuing to take the medicine

By the way....I felt like you described me when you were describing your symptoms. Especially the bubble's popping. I had that but it was so loud in my lectures and seminars and so embarassing. It sounded like my stomach was grumbling but I had just eaten!!! My problem is that the symptoms have persisted even though I have tried to counter the symptoms with medicine to help my stomach but it hasn't worked.

Nevermind because I have my appointment with my Rheumy doc soon, which I'm sure will help a lot.

Thank you for your support!

Jules xxxx