21-02-2016, 13:30
PCO - my experience
September 4 2007 at 10:45 PM Louise (Login Louise1982)
SENIOR MEMBER
I first had the odd twinge of abdominal pain when I was about 17 and had bad period pains from age 15. Have always been fairly hairy, never had terrible skin. Was on the pill age 16-19 - improved period pains. Age 19 had severe attack of lower back pain, was asked by GP if I'd pulled a muscle or if I was sure I wasn't constipated. Few months later had severe attack of abdominal pain, GP gave painkillers. Took painkillers for 5 days then the warfarin in them started giving nosebleeds so had to stop, GP ordered ultrasound. Was told by technician that ultrasound was normal, never got written report, doctors considered endometriosis and it got left. Age 23 developed sideburns, age 24 acne, age 25 chest hair. Started the pill - acne, pms, period pains, mid cycle pains all gone, joint pains improved. I requested hormone tests, the GP said I should be seen in hospital. Hospital said I need to come off the pill, have tests and see the GP as they can't give a follow up appointment for 6 months.
That's the boring background...so on Friday I thought I'd give a private gynaecologist a try and they did ultrasound and saw me with the results this evening. I do have ovarian cysts, and the left ovary is deep which may explain all the back pain. I've been given a prescription for metformin to combat insulin resistance and dianette to balance hormones and block testosterone. Further hormone, thyroid and liver tests to be done next week. Finally after 6 years I have a diagnosis and can begin some treatment - what a relief!
I'd really urge anyone else who's left in limbo of having all the symptoms but no diagnosis to go private and get something done about it, here's a link to the female gynae I saw (London / Essex area, UK):
http://www.gynaecologist4u.co.uk/index.html
So let's just hope it works, even if it has no effect on boob growth, just to know I'm not sitting here slowly becoming diabetic as the testosterone kills of the insulin receptors it's well worth the money.
Good luck and best of health to all xx
Lost Sheep
(no login)
Thank God!
September 5 2007, 7:31 AM
It must have been a relief to finally get a proper diagnosis. Even if PCOS isn't nice to have, at least you will be able to get treatment which is great. Sometimes doctors are so sloppy! A friend of mine went for YEARS with cancer growing in her chest without any doctor noticing it even though she complained about "pressure", difficulties to breath and chest pains. A simple x-ray would have given the answer. Instead, the cancer mass kept growing and attaching itself to her lungs and to the tissues around her heart. :-( Just clumsy idiot doctors fault. Incompetence!
Anyway, I'm glad you will be able to do something about your previous trouble and hope the meds will help you get well.
Lisa
(Login Lisa121)
EVE MEMBERS
Re: PCO - my experience
September 5 2007, 1:43 PM
Louise, I am so glad you found out what is wrong, now you know what to treat at least, that is a big relief, I know how you feel, I have been undiagnosed with several things over years, it went that far that doctors even told me I was imagining things. Nice, huh, especially when it turned out in the end that I was right all along and they were wrong. There are just too many doctors out there that are just not very good, but think they are, and that just sucks.
I hope you get better soon. Can you get rid of the cysts by taking medicine or do you need an operation to get rid of them?
I just don't get it how it works, I thought extra estrogen can cause these cysts, but on my blood tests from years ago it said that I might be at risk, but I have elevated testosterone levels and not estrogen.
At least you know that all your increased symptoms will be from the cysts, so when you get rid of them those should go away or at least get better too.
Louise
(Login Louise1982)
SENIOR MEMBER
Sorry, can't help being long-winded
September 5 2007, 2:03 PM
Thanks Black sheep and Lisa for your support xx
They only usually operate if you have one big cyst. PCO means that the surface of the ovaries is covered in tiny cysts which I think are the follicles that should have become ova which is why some PCO women don't ovulate. I'm going to be reading about this so will keep you posted. On the plus side infertility is more common in women who are over weight and low calorie diet and weight loss can restart the ovulation, so glad I've got the weight down anyway.
I just need to remember not to go mad and that the metformin isn't license to eat sweets all day! I might buy a diabetes blood sugar home testing kit so I can keep an eye out, my degree covered diabetic stuff so I know how to interpret the results. Also hopefully the cyproterone in dianette will fix the hairs but if not the doctor is willing to prescribe cyproterone in addition. She did warn me that you can't take it long term because of the liver toxicity but that when you come off it the hair comes back unchanged not any worse. I have also read a study that concluded 4 years of cyproterone significantly reduced hair regrowth so praying just to stop it then can think about electrolysis to mop up what's left.
-------------------------------------------------------------------------
Lisa,
I think you're UK-based, if so I would strongly recommend going private. I'm particularly annoyed because when I first went to the GP I was covered by Bupa and by the time she'd finished fobbing me off with painkillers and antibiotics I'd left my job and lost the medical cover so now I'm paying Bupa to treat me. Even so the ultrasound, consultant appointment and blood work is going to be about £550 and then £25 for 3 months metformin and dianette so could be worse. I was told originally that my ovaries looked normal but now I'm not sure that an actual doctor ever saw the images or that my report didn't just get lost in the system. At that time I also had a blood sugar test (they didn't tell me it was fasting glucose) and I ate a pasty and a cake on the way to the test and never heard back from the doctor - surely that would've produced an abnormal result!!
Louise
(Login Louise1982)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 2:37 PM
This is good:
http://en.wikipedia.org/wiki/Polycystic_ovary_syndrome
Also PCOS i.e. the syndrome can be present without any actual visible cysts but can still be treated in the same way to relieve acne, hirsutism, weight problems, pms and other hormonal symptoms.
momXseven
(Login momXseven)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 3:33 PM
Man I could have written your post, My back pain set in around 15/16. I was on Tylenol 3 ( Tylenol with codeine) by 16 and on to real pain killers by 19. I have lot of ovarian cysts, about every 2-3 months. I got a diagnosis of endometriosis at 25 and than diagnosis of PCOS this past year at 32. My Dr said I'm a walking miracle to have endo & PCOS and 7 kids.
Louise
(Login Louise1982)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 3:44 PM
MomXseven, are you on meds for any of this? I was ?endometriosis a while ago as it would explain cyclic pains as the stray endometrium builds up (dunno if contraception lessens this - definitely makes periods lighter). Are you concerned about insulin resistance?
momXseven
(Login momXseven)
SENIOR MEMBER
Louise
September 5 2007, 4:47 PM
Not on any meds right now. I have been watching my blood sugar all my life. I was hypogloseamic (spelling ?) from birth until about 3 years ago and than started getting in pre-diabetes range. I was told I had had "reactive" hypo and they have now learned that those with reactive hypo can go diabetic. So long story short I'm still watching but still not in need of meds yet. My blood sugar is still within normal range most of the time, if I have a spick it comes down pretty fast on it's own. I've done better as the weight loss.
Louise
(Login Louise1982)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 4:57 PM
The gynaecologist I saw lists PCO, endometriosis and gynaecological endicrinology amongst her specialities. She looked at the ultrasound and put me straight on anti-diabetic medication. When you say hypoglycaemia are you sure you don't mean hyper (too much)? I've not had it checked but hopefully the tablets mean I can eat normally and have already lost a lot of weight. Apparently high insulin levels encourage a fat belly and discourage fat boobs. If you've got PCO you're making plenty of insulin and then ignoring it so you have high levels. Interestingly I read that there is a higher than normal percentage of PCO women who have problems with milk yield so possibly this is why I didn't get bigger boobs as a teenager. Also this article said nearly all PCO women lack progesterone which is something I intend to ask the doctor about next time. The doctor told me that exercise makes you more sensitive to insulin so you produce less. Have you done much reading about SHBG? This binds to sex hormones and prevents them attaching to receptors so low SHBG (which you also get from PCO) means more free testosterone.
momXseven
(Login momXseven)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 5:15 PM
WOW, I hate most of the US Dr's. They don't tell you anything.
Yes I mean hypoglycemia, too low. That's the odd thing, going from too low to too high but it's because it's the "reactive" hypo.
You Dr didn't check your sugar level before putting you on anti-diabetic meds? That's not right!
No I haven't really looked into SHBG, I will now. Do you remember me posting that I'm 33 and have never really even had a sex drive at all and now after being on GABA and maybe from the other herbs I have a real sex drive finally.
Boy all the things I have learning just because I wasn't happy with my boob size, LOL.
BTW, Louise I emailed you.
This message has been edited by momXseven on Sep 5, 2007 5:20 PM
Louise
(Login Louise1982)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 5:22 PM
I think the antidiabetic meds not to reduce blood sugar but to make me more reactive to insulin such that I don't produce so much insulin. I'm glad to take this as I hope it'll help to direct fat where I want it and I can stop panicking about all the low fat foods I eat that are sugary. I wonder if it's possible you produce too much insulin and do react to it causing your sugar level to drop. It's usually high in PCO.
LL
(Login Lillea)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 10:41 PM
Thank you for posting this, Louise. I have wondered about myself for a while. Acne, hairiness, problems with carbs. I'm slim, but I've come to understand that PCOS isn't weight dependant. Tomorrow I'm having an ultra-sound. I already had blood work done for PCOS and the results were all 'normal' but the doctor told me that just one test isn't going to give the full picture of what my hormones are doing. It said I wasn't diabetic. I really need more comprehensive tests, I feel, to find out what's going on.
I found this site:
http://www.ovarian-cysts-pcos.com/index.html
and bought the e-book about diet. When I ate in the way it described in the past (low carb), my acne cleared up and I think I gained some boobage, but then I went through a stressful time and upped carbs (in the form of fruit and rice), which brought back the acne and compromised the boobs.
Thanks again for sharing what you're going through.
This message has been edited by Lillea on Dec 24, 2007 7:21 AM
KittyCharlette
(Login KittyCharlette)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 11:31 PM
i dont know much about PCO and i dont think that i have it, but i just wanted to sympathize with you ladies on not getting answers from doctors. i too have been "brushed off" about my womanly problems. ive always had really heavy, very painful periods and every gyn ive seen just gives me a pap and birth control and send me on my way. needless to say birthcontrol only shortened my periods from 7 days to 3 or 4 but are still heavy and painful. anyway, i know what its like to be ignored by "professionals". i have seen this with my daughter also for different problems. its a shame. i don't even see doctors as often anymore. ive been looking more and more into natural remedies. good luck with you, louise. i hope everything turns out OK for you
Louise
(Login Louise1982)
SENIOR MEMBER
Re: PCO - my experience
September 6 2007, 6:56 PM
I think a lot of people on here have some problem or another hence they didn't get boobs the first time round.
Lillea - have the scan, but PCOS i.e. the syndrome is not dependent on having actual cysts, so if you have all the other stuff but not the cysts you can still have PCOS and benefit from treatment. Similarly if you have just the cysts but not the rest then you have PCO not PCOS. BTW, I read that PCOS makes you deficient in vitamins A,B6 and zinc and supplementing these can improve the skin.
Kittycharlette - what you have sounds most like fibroids or possibly uterine polyps or maybe even endometriosis, PCO usually causes lighter periods. Fibroids should get better after a pregnancy, I think polyps can be lasered off and endometriosis should be fixed by hysterectomy if it's affecting you badly. I think if the pill makes you feel better rather than worse you probably have some underlying hormonal problem, maybe try a different doctor.
Thanks for the support girls, good luck to all with medical probs and boobs x
LL
(Login Lillea)
SENIOR MEMBER
Re: PCO - my experience
September 6 2007, 7:15 PM
Thanks, Louise. I'm hoping that tests or someone will help me to figure out why I'm having these symptoms! That's interesting about the vitamin deficiencies. I'll pay attention to that!
Today is ultra sound day for me. I want to be healthy, but in some ways it would be a relief to know that I have cysts - at least it would be an explaination.
Louise
(Login Louise1982)
SENIOR MEMBER
Re: PCO - my experience
September 6 2007, 7:42 PM
The way I see it you're living with the untreated disease at least a diagnosis means you can get some treatment.
September 4 2007 at 10:45 PM Louise (Login Louise1982)
SENIOR MEMBER
I first had the odd twinge of abdominal pain when I was about 17 and had bad period pains from age 15. Have always been fairly hairy, never had terrible skin. Was on the pill age 16-19 - improved period pains. Age 19 had severe attack of lower back pain, was asked by GP if I'd pulled a muscle or if I was sure I wasn't constipated. Few months later had severe attack of abdominal pain, GP gave painkillers. Took painkillers for 5 days then the warfarin in them started giving nosebleeds so had to stop, GP ordered ultrasound. Was told by technician that ultrasound was normal, never got written report, doctors considered endometriosis and it got left. Age 23 developed sideburns, age 24 acne, age 25 chest hair. Started the pill - acne, pms, period pains, mid cycle pains all gone, joint pains improved. I requested hormone tests, the GP said I should be seen in hospital. Hospital said I need to come off the pill, have tests and see the GP as they can't give a follow up appointment for 6 months.
That's the boring background...so on Friday I thought I'd give a private gynaecologist a try and they did ultrasound and saw me with the results this evening. I do have ovarian cysts, and the left ovary is deep which may explain all the back pain. I've been given a prescription for metformin to combat insulin resistance and dianette to balance hormones and block testosterone. Further hormone, thyroid and liver tests to be done next week. Finally after 6 years I have a diagnosis and can begin some treatment - what a relief!
I'd really urge anyone else who's left in limbo of having all the symptoms but no diagnosis to go private and get something done about it, here's a link to the female gynae I saw (London / Essex area, UK):
http://www.gynaecologist4u.co.uk/index.html
So let's just hope it works, even if it has no effect on boob growth, just to know I'm not sitting here slowly becoming diabetic as the testosterone kills of the insulin receptors it's well worth the money.
Good luck and best of health to all xx
Lost Sheep
(no login)
Thank God!
September 5 2007, 7:31 AM
It must have been a relief to finally get a proper diagnosis. Even if PCOS isn't nice to have, at least you will be able to get treatment which is great. Sometimes doctors are so sloppy! A friend of mine went for YEARS with cancer growing in her chest without any doctor noticing it even though she complained about "pressure", difficulties to breath and chest pains. A simple x-ray would have given the answer. Instead, the cancer mass kept growing and attaching itself to her lungs and to the tissues around her heart. :-( Just clumsy idiot doctors fault. Incompetence!
Anyway, I'm glad you will be able to do something about your previous trouble and hope the meds will help you get well.
Lisa
(Login Lisa121)
EVE MEMBERS
Re: PCO - my experience
September 5 2007, 1:43 PM
Louise, I am so glad you found out what is wrong, now you know what to treat at least, that is a big relief, I know how you feel, I have been undiagnosed with several things over years, it went that far that doctors even told me I was imagining things. Nice, huh, especially when it turned out in the end that I was right all along and they were wrong. There are just too many doctors out there that are just not very good, but think they are, and that just sucks.
I hope you get better soon. Can you get rid of the cysts by taking medicine or do you need an operation to get rid of them?
I just don't get it how it works, I thought extra estrogen can cause these cysts, but on my blood tests from years ago it said that I might be at risk, but I have elevated testosterone levels and not estrogen.
At least you know that all your increased symptoms will be from the cysts, so when you get rid of them those should go away or at least get better too.
Louise
(Login Louise1982)
SENIOR MEMBER
Sorry, can't help being long-winded
September 5 2007, 2:03 PM
Thanks Black sheep and Lisa for your support xx
They only usually operate if you have one big cyst. PCO means that the surface of the ovaries is covered in tiny cysts which I think are the follicles that should have become ova which is why some PCO women don't ovulate. I'm going to be reading about this so will keep you posted. On the plus side infertility is more common in women who are over weight and low calorie diet and weight loss can restart the ovulation, so glad I've got the weight down anyway.
I just need to remember not to go mad and that the metformin isn't license to eat sweets all day! I might buy a diabetes blood sugar home testing kit so I can keep an eye out, my degree covered diabetic stuff so I know how to interpret the results. Also hopefully the cyproterone in dianette will fix the hairs but if not the doctor is willing to prescribe cyproterone in addition. She did warn me that you can't take it long term because of the liver toxicity but that when you come off it the hair comes back unchanged not any worse. I have also read a study that concluded 4 years of cyproterone significantly reduced hair regrowth so praying just to stop it then can think about electrolysis to mop up what's left.
-------------------------------------------------------------------------
Lisa,
I think you're UK-based, if so I would strongly recommend going private. I'm particularly annoyed because when I first went to the GP I was covered by Bupa and by the time she'd finished fobbing me off with painkillers and antibiotics I'd left my job and lost the medical cover so now I'm paying Bupa to treat me. Even so the ultrasound, consultant appointment and blood work is going to be about £550 and then £25 for 3 months metformin and dianette so could be worse. I was told originally that my ovaries looked normal but now I'm not sure that an actual doctor ever saw the images or that my report didn't just get lost in the system. At that time I also had a blood sugar test (they didn't tell me it was fasting glucose) and I ate a pasty and a cake on the way to the test and never heard back from the doctor - surely that would've produced an abnormal result!!
Louise
(Login Louise1982)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 2:37 PM
This is good:
http://en.wikipedia.org/wiki/Polycystic_ovary_syndrome
Also PCOS i.e. the syndrome can be present without any actual visible cysts but can still be treated in the same way to relieve acne, hirsutism, weight problems, pms and other hormonal symptoms.
momXseven
(Login momXseven)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 3:33 PM
Man I could have written your post, My back pain set in around 15/16. I was on Tylenol 3 ( Tylenol with codeine) by 16 and on to real pain killers by 19. I have lot of ovarian cysts, about every 2-3 months. I got a diagnosis of endometriosis at 25 and than diagnosis of PCOS this past year at 32. My Dr said I'm a walking miracle to have endo & PCOS and 7 kids.
Louise
(Login Louise1982)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 3:44 PM
MomXseven, are you on meds for any of this? I was ?endometriosis a while ago as it would explain cyclic pains as the stray endometrium builds up (dunno if contraception lessens this - definitely makes periods lighter). Are you concerned about insulin resistance?
momXseven
(Login momXseven)
SENIOR MEMBER
Louise
September 5 2007, 4:47 PM
Not on any meds right now. I have been watching my blood sugar all my life. I was hypogloseamic (spelling ?) from birth until about 3 years ago and than started getting in pre-diabetes range. I was told I had had "reactive" hypo and they have now learned that those with reactive hypo can go diabetic. So long story short I'm still watching but still not in need of meds yet. My blood sugar is still within normal range most of the time, if I have a spick it comes down pretty fast on it's own. I've done better as the weight loss.
Louise
(Login Louise1982)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 4:57 PM
The gynaecologist I saw lists PCO, endometriosis and gynaecological endicrinology amongst her specialities. She looked at the ultrasound and put me straight on anti-diabetic medication. When you say hypoglycaemia are you sure you don't mean hyper (too much)? I've not had it checked but hopefully the tablets mean I can eat normally and have already lost a lot of weight. Apparently high insulin levels encourage a fat belly and discourage fat boobs. If you've got PCO you're making plenty of insulin and then ignoring it so you have high levels. Interestingly I read that there is a higher than normal percentage of PCO women who have problems with milk yield so possibly this is why I didn't get bigger boobs as a teenager. Also this article said nearly all PCO women lack progesterone which is something I intend to ask the doctor about next time. The doctor told me that exercise makes you more sensitive to insulin so you produce less. Have you done much reading about SHBG? This binds to sex hormones and prevents them attaching to receptors so low SHBG (which you also get from PCO) means more free testosterone.
momXseven
(Login momXseven)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 5:15 PM
WOW, I hate most of the US Dr's. They don't tell you anything.
Yes I mean hypoglycemia, too low. That's the odd thing, going from too low to too high but it's because it's the "reactive" hypo.
You Dr didn't check your sugar level before putting you on anti-diabetic meds? That's not right!
No I haven't really looked into SHBG, I will now. Do you remember me posting that I'm 33 and have never really even had a sex drive at all and now after being on GABA and maybe from the other herbs I have a real sex drive finally.
Boy all the things I have learning just because I wasn't happy with my boob size, LOL.
BTW, Louise I emailed you.
This message has been edited by momXseven on Sep 5, 2007 5:20 PM
Louise
(Login Louise1982)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 5:22 PM
I think the antidiabetic meds not to reduce blood sugar but to make me more reactive to insulin such that I don't produce so much insulin. I'm glad to take this as I hope it'll help to direct fat where I want it and I can stop panicking about all the low fat foods I eat that are sugary. I wonder if it's possible you produce too much insulin and do react to it causing your sugar level to drop. It's usually high in PCO.
LL
(Login Lillea)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 10:41 PM
Thank you for posting this, Louise. I have wondered about myself for a while. Acne, hairiness, problems with carbs. I'm slim, but I've come to understand that PCOS isn't weight dependant. Tomorrow I'm having an ultra-sound. I already had blood work done for PCOS and the results were all 'normal' but the doctor told me that just one test isn't going to give the full picture of what my hormones are doing. It said I wasn't diabetic. I really need more comprehensive tests, I feel, to find out what's going on.
I found this site:
http://www.ovarian-cysts-pcos.com/index.html
and bought the e-book about diet. When I ate in the way it described in the past (low carb), my acne cleared up and I think I gained some boobage, but then I went through a stressful time and upped carbs (in the form of fruit and rice), which brought back the acne and compromised the boobs.
Thanks again for sharing what you're going through.
This message has been edited by Lillea on Dec 24, 2007 7:21 AM
KittyCharlette
(Login KittyCharlette)
SENIOR MEMBER
Re: PCO - my experience
September 5 2007, 11:31 PM
i dont know much about PCO and i dont think that i have it, but i just wanted to sympathize with you ladies on not getting answers from doctors. i too have been "brushed off" about my womanly problems. ive always had really heavy, very painful periods and every gyn ive seen just gives me a pap and birth control and send me on my way. needless to say birthcontrol only shortened my periods from 7 days to 3 or 4 but are still heavy and painful. anyway, i know what its like to be ignored by "professionals". i have seen this with my daughter also for different problems. its a shame. i don't even see doctors as often anymore. ive been looking more and more into natural remedies. good luck with you, louise. i hope everything turns out OK for you
Louise
(Login Louise1982)
SENIOR MEMBER
Re: PCO - my experience
September 6 2007, 6:56 PM
I think a lot of people on here have some problem or another hence they didn't get boobs the first time round.
Lillea - have the scan, but PCOS i.e. the syndrome is not dependent on having actual cysts, so if you have all the other stuff but not the cysts you can still have PCOS and benefit from treatment. Similarly if you have just the cysts but not the rest then you have PCO not PCOS. BTW, I read that PCOS makes you deficient in vitamins A,B6 and zinc and supplementing these can improve the skin.
Kittycharlette - what you have sounds most like fibroids or possibly uterine polyps or maybe even endometriosis, PCO usually causes lighter periods. Fibroids should get better after a pregnancy, I think polyps can be lasered off and endometriosis should be fixed by hysterectomy if it's affecting you badly. I think if the pill makes you feel better rather than worse you probably have some underlying hormonal problem, maybe try a different doctor.
Thanks for the support girls, good luck to all with medical probs and boobs x
LL
(Login Lillea)
SENIOR MEMBER
Re: PCO - my experience
September 6 2007, 7:15 PM
Thanks, Louise. I'm hoping that tests or someone will help me to figure out why I'm having these symptoms! That's interesting about the vitamin deficiencies. I'll pay attention to that!
Today is ultra sound day for me. I want to be healthy, but in some ways it would be a relief to know that I have cysts - at least it would be an explaination.
Louise
(Login Louise1982)
SENIOR MEMBER
Re: PCO - my experience
September 6 2007, 7:42 PM
The way I see it you're living with the untreated disease at least a diagnosis means you can get some treatment.