I am 110% sure I have PCOS although not officially diagnosed.

[ash_x]

Hi everyone,

I started my periods at a very young age, I was 9. Now I am 24 years old. Until 11-12 years of age my periods were normal/regular... after that it went all over the place. I would spot droplets of blood few times during the day, which would last 2-3 months, and then followed on with missing months of periods and then back on and off for the next couple of years.

I visited the GP at that age, took bloods, sent me for an ultrasound - which came back normal and just brushed it off saying they must be hormonal changes - it will get normal in some time (as in 2-3 years) if not then come back. I did, and at that time my GP was under new management so basically new doctors every time and it was really confusing. But, we just followed the doctors advice.

During that time, I put on a lot of weight, especially around my abdomen area (I am bottom heavy), bloating/swollen belly, have really bad acne, oily skin, significant hair loss (this hit me hard as I love my hair and it was really thick), I've lost so much over the years and it's made me feel awful. Well other than that, I think I have acanthosis nigricans (neck, underarm, inside thighs, underneath breast) my clitoris is enlarged (makes me feel really uncomfortable - I have never had sex and it just makes me fear that if I did, I would be in terrible pain or it would cause harm due to this), thick facial hair, and hair all over my body - belly, breasts, back, full arms, chin, neck, thighs, even inside my buttocks (if you know what I mean), I have somewhat developed a slightly deep voice not sure if it's related to this, but I know as a kid I didn't sound like this at all.

So, I went back at the age of 16-17 and had bloods/ultrasound scan which both came normal. I was told that I'm too young for any treatment, I should wait till I'm over 18 and come back, because they didn't want to put me on the pill at such a young age. And I personally do not want to be put on the pill.

Well by that time my GP had shut down due to some issues, joined another one but then I became so engrossed in my studies/uni life that I never really paid attention, although the problem continued. I eventually went back to the GP when I missed a few months - last year to discuss the issue as it has been getting to me really badly, especially because I have been trying to lose weight but it is such a struggle.

I began getting laser hair removal treatment for 2 years, which I stopped completely before the lock down as it worked, but only temporarily as I am still having hair growth - I got sick of it! Because the treatment is costly, and what was supposed to be a 8 session treatment, ended up being nearly 20 sessions.

During this time, I visited the GP again and the doctor referred me for a blood test and follow up, the result came normal. By surprise, I was on my periods when I visited the doctors again, and was told that since I was currently on my periods right now, it's best I come again when I miss my period, and then we shall discuss what needs to be done further, but in the meantime lose some weight, it will help. I was so tempted to say something back, but I just didn't bother especially as they were running late on schedule - the appt was rushed.

Anyways, post that I just didn't bother going back, it came normal for the few months post the appointment, but after that missed for a few months, and then came back on when the Covid became a serious issue. At this moment, although my friends/family are advising me I should still make an appt especially because my hair loss has worsened (my doctor recommended me to use Alpecin which I was using faithfully, did help for quite a while, but right now it's not having any effect on me, but I am losing so much of my hair).

I am not at all keen to go during this time, although for me it's becoming a major issue which is affecting my daily life, I think it's appropriate I don't waste their time as I'm sure many others are dealing with much complex issues and need attention first.

Finally, although the doctors have not diagnosed with hormonal problems/PCOS - I concluded that I am. And now I am at this stage where I do not know what to do anymore. I am trying to lose weight, by eating healthier, reducing my calorie intake, and working out more especially during this lock down which was a safe haven for me.

Life is getting back to normal, and I am sure I won't be able to keep up with my commitments. I feel so un-confident, so low in self-esteem, I do not feel good about myself at all. I've had depression in the past and feels like I'm heading back to that stage, I have always suffered from anxiety and it's become a part of life and I know it's something I can never overcome. So will be grateful if anyone could share some advice/tips or anything really which would make me feel better.

(P.S I would also like to add when I was 14 or so, I visited a homeopathy doctor once at the suggestion of a relative, who simply checked my wrist vein and touched my abdomen and said I have a cyst or something on the left side, although this has not been picked up in the scans I had, he did mention that this is why I have bloating/swollen tummy and causing my irregular periods).

I would like to apologise for such a lengthy post.

Thank you.

[veritypcos Partner]

Hi Ash,

Thanks for sharing your joruney so far, that sounds really upsetting.

I'm not a medical practitioner, just a volunteer with the condition but will ltry to help.

According to the Rotterdam criteria, used to diagnose PCOS, you could be diagnosed with it just for the fact that you have an irregular cycle and you have physical signs of androgen excess e.g. excess hair growth and weight gain.

You don't need to have 'cystic' ovaries to have the condition and it might be worth asking for a copy of your blood test results from over the years as although you're in the normal range you may be at the higher end for certain things. That's what happened to me in my teens.

It's worth reading through the NICE guidelines for PCOS (they're in our useful resources post) and using these when talking to your doctor. Make sure you document things like your cycles so you have everything logged and if you have any pictures of your hair before the laser treatment that might help give a visual example.

Also you don't have to see your named doctor at the surgery, you are within your rights to see another. Look up your surgery online and see if you have a women health specialist or if that options isn't there look for other surgeries in your area who might be better equipped to help.

Good luck and let us know how it goes

Krissy

[Juicyme25]

Hi Ash, I feel your pain and your journey is still continuing.

I am 45 and was diagnosed with PCOS during a sexual health clinic visit when I was around 17 or 18. I initially attended because I had reoccurring thrush and then BV. I have been fortunate in that I have always had great GP's who do not hesitate to refer me for further tests. Some people say your health is only as good as your GP, and I can see why.

I concur (agree) with everything Kristine is saying. However, I would say if you do not have the records or other things Kristine has recommended, do not wait to see your GP again. Book an appointment asap and absolutely insist that you want to be referred to a Gynelcologist or an Endocrinologist specialist. As it is your health and life at stake here, not theirs. Please insist on a referral as you have been living with this for the majority of your life. Do not take no for an answer, and if you need to, write down what you want to say before hand. Explain your symptoms in detail, do not be rushed and do not leave until you get a referral. That will be the start of your journey- seeing a specialist.

The hair removal is addressing the symptom not the root cause, which is a hormone imbalance. So you might see a reduction in body and facial hair if you can address the imbalance internally by taking hormones to counter balance this, or by having an operation. I took hormones and it started to work but the tablets had an adverse affect on me. So I stopped taking them, soon after I fell pregnant.

I belong to an inexpensive healthcare provider called Benedan, although you need a GP referral to see them, it might be an idea to join. It takes 6 months before you can see anyone about a pre existing condition. I only pay about £10 a month. So if you can afford it, this might be another alternative for you.

My symptoms were excessive facial hair. I have spent £1,000's on hair removal. I found one type that worked for eventually. I am unsure how much it contributes to my weight now, but I am two stones overweight.

I wish you good luck Ash, just don't take no for an answer or take someone with you who won't!

Faye

[LisaEB]

To me you have a lot of classic signs if PCOS, so there are treatments that can help. See another doctor and get a scan, that's how I was diagnosed.