Possible pcos | Mumsnet

Aimseelauren · 2022-10-03T14:52:02+00:00

Hi all, apologies in advance whilst I vent/try my best to explain! so I had my implant removed in April and had it replaced with the copper coil. I have struggled with my weight all my adult life and hoped switching to non normal birth control would help. I have been using a pt and have honestly tried so hard to lose weight and have been doing so seriously since March. So far I have lost the same 4 kilos up and down over and over again, my PT suggested doing an at home hormones test, I did this and it showed that I had almost triple the hormones of a normal person, indicating PCOS. I contacted my doctor who firstly berated me for doing the at home text but sent me for an ultrasound and blood tests. He insists all results are normal and require no further action, despite the lady who did my scan telling me I was multi follicular which also indicates PCOS. im just so frustrated and lost. My periods are mostly regular but can sometimes throw me a curveball to keep me on my toes, I’m overweight, can’t lose weight, suffer from acne and headaches,mood swings. All symptoms point to normal pcos but according to the doctor it’s just me being overweight and I’m not trying hard enough! can anyone help/has anyone been through something similar. I know there’s something going on but don’t seem to be able to get to the bottom of it! any help or advice would be so appreciated!

Neverendingperiod · 03/10/2022 17:03

Hi Op I'm so sorry I don't have any advice but I'm in a similar position but I think it is endometriosis rather than pcos, as we have a family history of endometriosis and I have most of the symptoms.
The past few months have been hell, I have put on 2 stone in 1 year and it keeps increasing slowly despite watching what I eat and joining the gym. I look 9 months pregnant all the time.
My periods have been irregular since the start of the pandemic, usually short, every 17-20 days but since June they have been more irregular and I had bleeding 22 days in a row in July and 16 days in August, I had 2 10 day periods in September with a week break in between so whatever it is, it's definitely getting worse.
I recently saw a new Dr, I'll call her Dr D and she has been incredible, she has referred me for scans back in July though I've still not heard anything ( she said it could be 16 weeks before I hear so hopefully soon)and I'm going for blood tests on Wednesday as I'm so tired and I catch every cold going, I've had this one for 3 weeks now with no improvement. No one else in the house is ill and we eat similar food so I think it's the sheer amount of blood I'm losing that's affecting my immune system. I googled and found "period flu" last year because it seemed a strange coincidence that I was always ill on my period and my Dr at the time said it is real and put me on the progesterone only pill, which has helped reduce the pain during my period slightly but it is still excruciating.
I recently told the pharmacist when i was buying ibuprofen with codeine that I am tempted to go to a and e, especially as the pain on my left side sometimes makes me vomit and she said "just go" and she was shocked I'm putting up with these symptoms.
I left and cried for hours.
I also cried after my call to Dr D last week and on the phone to book my blood test, it's getting me down so much.
I gave up my job in July and I honestly don't know how I coped for so long doing the long shifts, I was in so much pain I could hardly concentrate and I was ill all the time.

I would recommend asking to see another Dr, I had one GP throughout the pandemic, well on the phone, who was no help, offered no options, made me feel like it was just one of those things whereas Dr D has been the opposite and I feel so lucky to have her.

I hope someone can give you some answers and better advice.

Sending you a big hug 🫂 ❤

DameWashalot82 · 03/10/2022 17:29

Hi OP it does sound like PCOS to me...there are some good podcasts that explain why often standard tests won't be enough. Can't remember offhand the name but a quick Google should throw up some things for you to look at. Lara Biden is a good source of info for hormonal stuff, her books and blog explain things a lot.
I have 'lean' pcos and remember my doctor telling me I couldn't possibly have pcos but a scan showed the multi follicles and I had elevated hormones including testosterone which was causing my acne. I've also got insulin resistance issues and again was told nothing wrong with your blood sugars but when a different test was done I was nearly on cusp of pre diabetes!

Bottom line is everyone is different and hormones and blood sugars effect everyone in different ways so sometimes tests hard to Pin point exactly

DameWashalot82 · 03/10/2022 17:30

Just remembered podcast: the pcos nutritionist

Original poster

Aimseelauren · 03/10/2022 18:51

I’m so sorry to hear you are also struggling. It definitely seems as though pcos and endometriosis are ignored frequently with GPS. A friend of mine has gone private and had a completely different experience, unfortunately that’s not something I can afford to do.
I hope you get to the bottom of it and are able to move forwards soon!

OP posts:

Original poster

Aimseelauren · 03/10/2022 18:54

DameWashalot82 · 03/10/2022 17:29

Hi OP it does sound like PCOS to me...there are some good podcasts that explain why often standard tests won't be enough. Can't remember offhand the name but a quick Google should throw up some things for you to look at. Lara Biden is a good source of info for hormonal stuff, her books and blog explain things a lot.
I have 'lean' pcos and remember my doctor telling me I couldn't possibly have pcos but a scan showed the multi follicles and I had elevated hormones including testosterone which was causing my acne. I've also got insulin resistance issues and again was told nothing wrong with your blood sugars but when a different test was done I was nearly on cusp of pre diabetes!

Bottom line is everyone is different and hormones and blood sugars effect everyone in different ways so sometimes tests hard to Pin point exactly

I’ll take a look, thank you so much! So frustrating that there seems to be no reliable way of diagnosing!@DameWashalot82

OP posts:

Original poster

Aimseelauren · 03/10/2022 18:55

Neverendingperiod · 03/10/2022 17:03

Hi Op I'm so sorry I don't have any advice but I'm in a similar position but I think it is endometriosis rather than pcos, as we have a family history of endometriosis and I have most of the symptoms.
The past few months have been hell, I have put on 2 stone in 1 year and it keeps increasing slowly despite watching what I eat and joining the gym. I look 9 months pregnant all the time.
My periods have been irregular since the start of the pandemic, usually short, every 17-20 days but since June they have been more irregular and I had bleeding 22 days in a row in July and 16 days in August, I had 2 10 day periods in September with a week break in between so whatever it is, it's definitely getting worse.
I recently saw a new Dr, I'll call her Dr D and she has been incredible, she has referred me for scans back in July though I've still not heard anything ( she said it could be 16 weeks before I hear so hopefully soon)and I'm going for blood tests on Wednesday as I'm so tired and I catch every cold going, I've had this one for 3 weeks now with no improvement. No one else in the house is ill and we eat similar food so I think it's the sheer amount of blood I'm losing that's affecting my immune system. I googled and found "period flu" last year because it seemed a strange coincidence that I was always ill on my period and my Dr at the time said it is real and put me on the progesterone only pill, which has helped reduce the pain during my period slightly but it is still excruciating.
I recently told the pharmacist when i was buying ibuprofen with codeine that I am tempted to go to a and e, especially as the pain on my left side sometimes makes me vomit and she said "just go" and she was shocked I'm putting up with these symptoms.
I left and cried for hours.
I also cried after my call to Dr D last week and on the phone to book my blood test, it's getting me down so much.
I gave up my job in July and I honestly don't know how I coped for so long doing the long shifts, I was in so much pain I could hardly concentrate and I was ill all the time.

I would recommend asking to see another Dr, I had one GP throughout the pandemic, well on the phone, who was no help, offered no options, made me feel like it was just one of those things whereas Dr D has been the opposite and I feel so lucky to have her.

I hope someone can give you some answers and better advice.

Sending you a big hug 🫂 ❤

@Neverendingperiod I’m so sorry to hear you are also struggling. It definitely seems as though pcos and endometriosis are ignored frequently with GPS. A friend of mine has gone private and had a completely different experience, unfortunately that’s not something I can afford to do.

I hope you get to the bottom of it and are able to move forwards soon!

OP posts:

ajandjjmum · 03/10/2022 19:29

My DD struggled for months with PCOS - GP told her to exercise more (she was attending two high level gym classes every day), eat less (she was eating like a sparrow) and prescribed antidepressants. She was having outbreaks of acne and generally feeling rubbish.

She went to see a guy who was a consultant specialising in PCOS, and he prescribed Metformin - it has literally changed her life.

Neverendingperiod · 03/10/2022 19:40

Thank you OP, I hope you get some relief soon too!
I found this website a few weeks ago, www.careopinion.org.uk/ it has feedback from patients about everything however there is often nurses responding and I clicked on the nurses name and it revealed all her replies to patients in the gynae ward, there were so many it that it was multiple pages of replies.
In each one she asked the women to email her and she would follow up, maybe you could see if someone has posted in your area?
My issue is I haven't even had the first scan, which Dr D said probably won't show anything anyway but has to be done first before an operation which would confirm endometriosis. My aunt was told she didn't have endometriosis however the surgeon found it when she had a hysterectomy.
I really wish there were more options before it gets this bad.

DaisyArtichoke7 · 03/10/2022 20:33

I think what the doctor meant was that losing weight is supposed to relieve pcos symptoms and reduce risk of the associated long term health problems. Lifestyle change is the first “treatment” and this is what your doctor has advised isn’t it? That said it’s certainly not easy to lose weight if you have pcos.

ajandjjmum · 03/10/2022 21:16

But that's the point, with PCOS it can be impossible to lose weight. Nomatter how much you exercise and how much you diet/eat healthily. Horrible condition - I saw it really drag down my beautiful, confident daughter, and I hate to think of others going through the same.

septembersapphire7 · 03/10/2022 21:56

There is a way to diagnose it pcos properly! Nice guidelines clearly state what is required.
did you GP request bloods for FSH/LH on day 3 of your period? Testosterone and SHBG? thyroids function tests, fasting glucose as well as vitamin D? These are basic bloods that should be done in addition to FBC/kidney and liver tests when Looking for PCOS.

it’s any TWO of:

irregular periods
ultrasound showing multiple follicles
Bloods showing high hormones like testosterone

(my gp surgery had classified my bloods as normal until I looked at them and saw my LH:FSH ratio was 5:1 (should be roughly the same on day 3) and requested the extra tests. I was trying to get pregnant and getting frustrated with how long it took them to get to that diagnosis. Like a pp said, I was started on metformin by my infertility consultant and it’s already made such a big difference. Keep calling back and ask for a second opinion!)

beonmywaythen · 03/10/2022 22:07

I have PCOS. It sucks, I'm sorry. But you can make it better! There are a few apps you can download to help with lifestyle changes, but the number one thing is insulin resistance and glycemic index. Keep your blood sugar levels on an even keel and you'll vastly improve. I'm also on 1000 mg a day of metformin to help. Good luck!!