Pcos

San2

San2

Mod
Okay, finally I have officially been diagnosed with PCOS.

I thought that once the whole thing had a name, something could be done about it. Was something done?

No. I was referred to a gynacologist, who didn't know his arse from a hole in the ground. He told me to look it up on the internet, come back in 8 weeks and tell him what to do.

Excuse me? I might have a a warped sense of reality, but I was always under the impression that if you go to a doctor, they will explain to you what's wrong with you, tell you what kind of treatments are available, and then try to come up with what's best for you? At least that was my experience so far, but apparently, UK doctors are different.

So....after 4 months of waiting and being tested, probed, prodded and scanned, I am back to square one. Great.

The only thing I got offered was fertility treatment, which was when I got slightly vocal and told him exactly where he could stick his fertility treatment. I am 34 for crying out loud, if I had wanted kids, I would have been there 10 years ago. I don't even like kids, so I would rather cover myself in honey and sit on a termite hill than to have any. Apparently I am not normal, according to that doctor, every woman wants children, and what did I expect him to do anyway if having kids wasn't an issue?

So, not only wasn't he helpful at all, he basically accused me of wasting his time because I wasn't there for some sort of fertility treatment. I asked for some sort of help with the constant pain I am in, the heavy bleeding that lasts for 8 - 12 weeks and makes me collapse on a regular basis (sorry for being slight graphic, hope I'm not putting anybody off their food). Or how about the hair that grows in places that women simply shouldn't have hair, or the skin problems that no amount of skincare products seem to be able to take care of. The fact that my husband rarely even tries to have sex with me anymore because he knows it'll just make things worse, and it hurts. Not to mention that he's worried sick because his first wife died of cancer, and when he heard the word 'cysts', he went through the roof.

I also mentioned that there were several cases of ovarian cancer in my family.

Nope, the doc wasn't having any of it. Go home, look it up on the internet, then come back. I asked him to do an insulin resistancy test, and he asked me what for. So much for that.

So, what do I do now? The doctor is a waste of time, and so far I couldn't locate any specialists for PCOS in the Greater Manchester area. Since my symptoms have gotten a lot worse over the last few months (which is interesting, and very discouraging, since weight loss is supposed to make it better not worse) I would really like to find some help.

So the main purpose off this long, off topic rant, is if anybody has any experience with PCOS and has any suggestions, hints, tips, advice, or simply the name of a good doctor or clinic, even a forum or website (other than the ones that come up when you put PCOS into google, I've seen them all), I would be more than grateful.

Thanks in advance!
 
Last edited:
First off, if you haven't already - get a different doctor, while there might not be one who's a specialist in your area, there are more than likely going to be some that are willing to learn.

From what I've read of PCOS, losing weight does help with it -- though it does make it more of a challenge to lose weight - you've done pretty great so far in that respect.

While i am not a fan of 'fad' style diets -there is a diet called the Insulin Resistance diet (oddly - avaiable on Google books :)

The Insulin-Resistance Diet: How to ... - Google Book Search

there is also a forum
SoulCysters.com: Polycystic Ovarian Syndrome (PCOS) Treatment & Resources
(of which I don't know much about other than it's for women with PCOS - it might be worth a viewing
 
Thanks for the reply.

I have been to my GP practice where I was told that if I want to get refered for a second opinion, then I would have to see my GP again first and explain why. So, appointment next Tuesday. Plus about another 8 - 12 weeks waiting time until I get the second opinion appointment. Part of me hopes that I'll just pass out while driving one day, maybe they'll take it seriously then?

Even though, on second thought, probably not. Unless you want to quit smoking, quit drinking, or want children, you're a second class patient in this country. Talk about having their priorities wrong! *grrr*

Anyway, yeah, losing weight should help, but so far it has done the opposite, which is another thing that worries me. And not all my symptomps can be blamed on PCOS, so I'm even more worried.

Had a look at the book, there are some things that look okay, I'll see if I can get my GP to do an insulin resistancy test with me, instead of waiting for the hospital appointment.

I'll have a look around on the forum later today....even if it's just for exchanging stories and experiences, it might help!

Again, thanks a lot! :)
 
Hi there
Sorry to hear about all your troubles! It is scandalous how poorly you have been treated. That specialist was very disrespectful, I would certainly let every female in earshot know about it.

You might see about getting referred to an endocrinologist, who deals specifically with hormones. PCOS is such an umbrella term, sort of a catch all like lupus. I was diagnosed with it and I don't even have cysts on my ovaries!

I had also been very hopeful that losing weight would help with my symptoms, but it hasn't done as much for me as I'd hoped. I think WL can help in terms of those interested in conception, in raising their fertility prospects. As for facial hair, I still have extra. I am now 39, and this all started when I was about 35-36, so I do wonder some about the possibility of perimenopause, too.

At any rate, Mal is right - you totally need a second opinion. Do try to get in to an endocrinologist. Do keep up with your WL efforts - you have done incredibly well so far!

Best wishes to you. You deserve kudos for being your own advocate. Keep at it, tiger! :smash:

Cheers
ABBA
 
I agree, find a new doctor. I got lucky, I knew I had some problem, I researched all the girlie problems, walked into my gyno [who I'd never gone to before], said "I've got PCOS", she checked, did an ultrasound, and said "Yes, you do." I was put on YAZ BC [I wasn't getting periods in 3, 4, 6months at times for the last, since I started getting them]. I'm not insulin resistant and I was told to lose weight and that would help.

Sorry for bogging you down with my story, but what I wanted to say was that, my gyno had point blank told me that not many doctors will help you with it or tell you that you have the problem and if they do, they don't know much about it.

It's a bunch of trial and error, like I said, I was put on Yaz, have been for a year and still am in imense pain, this time it's every month instead of every few. I know women who have been on many different medications and keep getting switched because the doctors arn't sure what is going to work. A LOT of gynos [least round here, n stories from others I've heard], only want to treat it if you want to have kids. I'm not ready for kids, most my gyno will do for me is stick me on BC. Some women don't want kids, therefore, the doctor doesn't do a damned thing.

Every case is different, some are worse than others. The side effects of having PCOS are a bitch and a half tho [at times].

Keep up with your weightloss, it might not solve it, but it should help it! Do you have the insulin resistance? If so, there are particular [generally low GI] diets that are formed for those with PCOS. Lots of books about it to. If you don't have it, you can pretty much continue on with what you're doing.

[sorry this was long and kinda all over]

There are also some great pcos forums that explain things. and each and every story is different.
 
Thanks for all the replies, and sorry it took me so long to answer. Things are being mad around here at the moment.

I appreciate all your comments and sharing your experience with me, it helps a lot! :) I'll post in a little more detail later, just wanted to say 'Thank you' while I had the chance! :)
 
Okay, finally some time to post. Again, thanks for the answers.

So, I went to see my GP yesterday. Explained what happened, and asked him to refer me for a second opinion. He said he had a better idea, and phoned the consultant of the gynaecological department of the hospital. Apparently she's the head honcho there. He told her what I told him, and then handed the phone to me. She seemed very nice, gave me an appointment with her personally (still 4 weeks waiting time, but better than the 12 they told me it would take), and apologised for the other doctor. She also said that she would make an appointment with an endocrinologist for me, so that he could check me out in the meantime, some more blood tests and so on.

She asked me about my symptoms on the phone and said that they were somewhat unusual, since I don't have the problem of not having periods, but having too many, too long, and too heavy. I had the ultrasound and they confirmed that I have a large amount of cysts in my ovaries, and the first blood test showed that my hormones are apparently all over the place. So it's PCOS, but with an added twist. She said that the usual hormone approach wouldn't work for me, because it would make the bleeding even worse, and not help at all. She promised to look into it and see what she can come up with. She also said that we should look into my family history of ovarian/cervical cancer, and make sure that we aren't taking any risks.

So that sounded okay to me. Maybe it was just unlucky that I ended up with that stupid doctor that day, not sure. I won't be convinced until I was actually there.

On the pro side, my GP actually checked a few things, and prescribed me with a cream that is supposed to help with the hair. It bleaches them and kills the roots at the same time, so they just fall out after a while. Haven't tried it yet because the pharmacy didn't have it in, but it might just work. Of course the hair is not the main problem, but it's one of many things that are just totally annoying. I can take painkillers if need be, but I don't think my skin will take kindly to a lot more shaving. *sigh*

I don't know about insuline resistance yet, because the stupid doctor didn't check for that. They will check while doing the extended hormone checks and all of that. So I will hopefully find that out soon. Personally I don't think I am, I have been losing weight relatively easily and rather fast, surely it would have been more difficult with insuline resistancy?

I noticed one thing, and that's how much any kind of stress affects me. Has anybody noticed that, or is that just me? If I get upset or angry or worried about anything, I can bet that a few hours later, I will start with cramps, and bleeding not long after. My skin instantly gets worse, and I could swear the hair grows faster as well, but that could just be my paranoia actually. *lol*
But seriously, it seems where others get an upset stomach or start biting their nails, my hormones go completely bonkers. Which stresses me out more, and makes it worse....I'm a mess, I tell you! *lol*

Anyway, sorry for the novel. I don't really have anybody to talk to about it around here, I am giving my husband as little detail as possible, he's worried enough as it is. So you poor guys have to endure it....sorry about that. And thanks for reading!
 
:Angel_anim:Hey, that's great that things are finally rolling for you in regard to investigations with a DECENT doc! Sounds like she really listens and knows her stuff. They will get to the bottom of your ailments, if you just hang in there. You did the right thing! Your GP sounds like a keeper for arranging it all.

Anyway, keep us posted. I can relate some to the hormone/stress thing. Sometimes it actually scares me how quickly I can swing from pleasantly happy to extremely blue or angry. I didn't used to be this way! *sigh* the joys of womanhood...

Hang in there, :driving:
ABBA
 
I'm 27 my doctor put me on metformin. It is for insulin even through my sugar isn't high. She told me that it would help I don't take it cause I like not having any weird foreign medication in me. I'm trying the old fashion eat less sugar approach. But you may want to ask your doc. It is a suggestion.
 
I'm actually on Metformin now. I don't really know if it is doing anything or not, but it's not making me feel any worse, so I'm taking it.
 
Reading this (and I hope I don't come across as rude) makes me wonder why people are so quick to diagnose or be diagnosed with a "disorder"..

In certain circumstances of course it is necessary to see what is going on, should you feel that something is wrong. It is also important to be proactive in your health care.. but otherwise some things can be left unresolved. In my humble opinion.

I will share my small story..

Since I started my period (age 13 and I am now 31) I have never had a regular period. I have never bled once a month around the same time. Not once. Sometimes I would go up to 4-5 months without a period. In the last 5 years it seems to be every other or 1 once per 3 months.

I went to the doctor when I was young and was told that my period would likely sort itself out in the coming years. It never did.

I started going to the doctors at age 23 to try to resolve this issue and see what was going on. She put me on the pill.

As you are all aware the pill is often used to "regulate" your period. Techinically though, when you are on the pill you are not having a regular period. At the end of each cycle your body realizes you are no longer receiving the hormone (the last 7 days are sugar pills) and responds by bleeding. Then you start the new pack of pills, body receives the hormones and then you stop bleeding.

When I started the sugar pills at the end of pack one, I started bleeding. I had the worst cramps I have ever experienced, ended up in the hospital with blood running down my legs (I am not exaggerating). The nurse informed me that it's common for that to happen, and to keep taking the pills. It should sort itself out in 3 months.

I then went to my doctor who suggested I start taking Naporsin about 5 days before my scheduled period and that would help with the pain and the amount of blood I was losing.

I sat down that night and really thought about it. I was taking a pill (filling my body with hormones) to regulate my period (or rather to bleed once a month and feel "normal") and I was taking another pill to regulate the bleeding caused by the first pill. I ripped the prescription to bits and called the whole thing off. I stopped the pill immediately.

I have been poked, prodded, ultrasounds, paps, the works. I resolved that perhaps this is just how my body works. I might not ovulate every month. So what? I accept that and I am happy.

In case you are wondering why this has anything to do with PCOS? Well my doctor suggested that I might have it. I might have it or I might not. Either way I don't really care to find out as I know it isn't a life threatening condition. Like suggested above it's a catch all umbrella phrase for a supposed disorder.

In the end, I'm just going to accept my body for what it is and let it operate how it's going to operate. I will have my normal pelvic exams and the occasional check to make sure there aren't any large growths on my uterus and that's about it.

Sometimes every question doesn't need to have an answer.

But that's just me.
 
Of course it's up to you how you handle these things.

Personally, if I'm in pain 24/7 and have days during which I can't leave the house because I'm bleeding so heavily, I want to know what's wrong, and what I can do about it.

Not ovulating every month is one thing, and if that was all, I probably wouldn't bother either. But it's not just that, unfortunately. It's something that is affecting my life on a day to day basis, and on some days it makes a 'normal' life impossible.

Believe me, I couldn't care less what it's called. Giving it a name doesn't make any difference. I wasn't looking for being 'diagnosed', I was looking for help. Still am, because unfortunately it has turned out that there is very little they can do. So, even though I was 'diagnosed', I am still in pain every day. I still can't have a normal sexual relationship with my husband. I still have to eat a handful of painkillers every few hours to even be able to function.

The reason people are looking for a 'diagnosis', as you call it, is because a) if doctors know what it is, they might know what to do about it as well, and b) because there is a world of ignorant people out there who won't even take you serious if you can't name what is wrong with you.

As said, if your symptoms are so minor that you're not really bothered, then hey, I'm happy for you. If it's not something that makes most of your days living hell, then I totally agree, why stuff yourself with pills that make you miserable and impact your life negatively?

Not everybody is so lucky though. In addition, my aunt has just been told that she has a tumor in her uterus, and my mother had ovarian cancer. So you might be able to understand why the heck I am adamant to know what exactly is going on down there.

And by the way, you're wrong. PCOS is not a a catch all umbrella phrase, there are very clear guidelines to what's PCOS and what's not. And it can be a life threatening condition in rare cases, because the cysts can mask any abnormalities. So a tumor could be misdiagnosed as a large cyst and left untreated for too long. With a family history of cancer, that's a risk that I personally won't take. And believe me, if you pass out while driving because you've lost so much blood, that's life threatening as well. Just because your symptoms are minor, don't think everybody is like that. Some people actually do have real problems.
 
Last edited:
You must log in or register to reply here.
Back
Top