Recent Diagnosis: Hi lovely people! I am... - PCOS UK (Verity)

PCOS UK (Verity)

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Recent Diagnosis

mwhitee profile image
8 Replies

Hi lovely people!

I am twenty years old and finally have been diagnosed with PCOS today after a long time researching it which has obviously been very emotional and I don't really know where to start with all of this. My appointment was awful I was seen by a male doctor who also had a male medical student with them so this was quite daunting. The doctor explained to me how he doesn't really know much about PCOS and has been advised to put me on the pill and that was it. I didn't feel it was the right environment to even ask any questions so I feel quite lost right now. The doctor even joked to me that he doesn't know much about the combined pill and asked the medical student if he knows anything about it too. He also just said when the time comes it will probably be more difficult for me to get pregnant so I'm just sat there thinking oh great you're putting me on the pill (which I don't particularly want to go on) until I want to get pregnant.

I guess what I'm asking is how do you navigate this diagnosis? and how do you deal with your symptoms?

Also if anyone has any books, videos or podcasts I can look at that would be amazing.

Any advice would be hugely appreciated, thank you x

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mwhitee
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8 Replies
Littlev profile image
Littlev

I’m so sorry to hear that you had a rough doctors appointment and I would suggest you ask for a different doctor or practice nurse to discuss your concerns and they might be more helpful to you.

Tigr profile image
Tigr

Hi, that sounds like a horrible experience! I am sorry you had to go through this. First of all, PCOS is a range. It can be mild with little symptoms and severe and everything in between. It is also possible to just have some symptoms and not others in different levels. So generalisations are a bit difficult (and problematic from healthcare providers!). In all cases, there is an imbalance of hormones and that can affect your metabolism, ovaries, hair growth and even mood. There is no cure, so treatment focusses on the symptoms. The pill will give you regular cycles and suppress some of the imbalance that can lead to acne etc. So if you are not opposed to it and are not trying to get pregnant, maybe a good idea. I never got along with it because my emotions were all over the place, but people are different. I tried and it took 2 years before I had what I would call "regular PCOS cycles" of around 40 days though, so this is something to consider. I don't know how common that is. I found myo Innositol to help me with regular (and less painful) cycles and low sugar diets with lots of excercise can help too. As for getting pregnant: it depends. Don't be scared. The biggest problem is usually that PCOS ovaries don't regularly ovulate. This is not always the case and some do, some don't. If you ovulate, no probs getting pregnant. If you irregularly ovulate, it will just take longer. If you don't ovulate at all, you can get medication that helps with that. There is also Metformin,that can help people with PCOS. So don't worry, you'll be fine! I do agree, you should see a second doctor and I think it is a good idea to track cycles and symptoms and once you wanna have a baby, check with the doctor ahead of time if you do ovulate (is a blood test on specific day of the cycle). Good luck with it all and you've got this!

springnoodles profile image
springnoodles

Sorry to hear that. I have delt with a male NHS doctor on the same subject. While it was not a bad experience at the time, in retrospect, he didn't do enough about supporting me with PCOS.

I got my period at 17, and I was getting tests done before that to find out why it was so late. I dealt with a male doctor for a few years who was really respectful to me and met my knowledge level right where I'm at - sharing information that was helpful but not overwhelming. I remember him noting that I had cycts in my ovaries, but did nothing about it despite knowing I was struggling with my weight, irregular hormone levels.

Im now 25 and living abroad temporarily. Ive had irregular periods for the last 8 years. I went to a gynaecologist for another issue, and he did some internal ultrasounds (yes, another male doc). Noted immediately that I have cycts and asked about my other symptoms. He was able to diagnose me with PCOS and help me with treatments within a week. He said it was shocking that someone hadn't diagnosed it before despite repeated NHS treatments.

Dont be sacred to ask to be assigned to a different doctor, if there is one available. Asking for a female doctor is totally acceptable. Cant promise theyll be better, but hopefully!

GreyhoundGirl20 profile image
GreyhoundGirl20

Hi there, I'm sorry to hear about your experience at the appointment, I had a similar one myself when I was trying to get diagnosed. I'm 20, have been suffering from symptoms for about three years and have seen an NHS gynaecologist since mid 2020, only got properly diagnosed with PCOS about 6 months ago.

My doctor at the time also recommended going onto the pill but due to family history I was reluctant to do that. Instead, I took Provera, which has helped with irregular/missed periods. If you get a chance to, and you can afford it, I would highly suggest seeing a private gynaecologist/endocrinologist for a second opinion.

I've read a decent amount that links/correlates PCOS with insulin resistance, and I have been following advice to lower sugar, alcohol and processed food intake and to increase exercise, which I would recommend (though I have found university is not the easiest place to do that!)

I wish you all the best. Feel free to email me if you ever want someone to talk to about this: charlie7450@gmail.com

Piperoni profile image
Piperoni

I have a great podcast episode for you all about PCOS! Toward the end, the guest doctor describes which hormonal treatment options can help with PCOS (Ortho Cyclen, Beyaz) and which ones might make things worse (anything containing Levonorgestrel, including IUDs).

The podcast is aimed at physicians, so some of the topics might be tricky to follow if you're unfamiliar with medical terminology. But I found it very informative and helpful.

open.spotify.com/episode/6o...

Louise_Payne profile image
Louise_Payne

PCOSinseven.eventbrite.co.uk on May 10th will talk you through everything you need to manage your PCOS! X

SupportPCOS profile image
SupportPCOS

There are indeed effective and safe treatment options for PCOS.

poster
Snowybell profile image
Snowybell

When I was first diagnosed (aged 22 in the 90s when very little was known or talked about it, I was blessed to have a GP who specialised in women's health) I was prescribed Cyproterone acetate (CPA) combined with ethinylestradiol (EE). This was to treat erratic cycle, hirsutism plus moderate to severe acne, plus the rest (!!!) related to androgen-sensitivity. I was given this after being referred to an endocrinologist for my PCOS.May be worth looking into this if this isn't what you are on. I was given about 3 pills incorrectly by male docs before I found the one above mentioned.

Sadly, most GPs are not trained in women's health as much as they should be. One of the reasons I also am now a Menopause Wellness Practitioner and currently chasing the effect of PCOS on this time of life.

I hope you find the treatment that works for you soon.

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