Awaiting further investigation...

[richar96]

Hi All,

Looking for anyone who has been in a similar situation to myself -

I was diagnosed with PCOS roughly mid-2018 aged 22, after having been on the pill between the ages of 18-21. The year between coming off the pill (due to weight & blood pressure) saw me having basically zero periods whatsoever. I ended up having scans/blood tests/etc. with the local hospital via my GP who eventually told me nothing was wrong but would refer me to Gynaecology just in case.

I had a face-to-face appointment with the Gynaecology consultant who told me as soon as I sat down that I had PCOS based on my test results - something which the GP had not mentioned, so took me by surprise. The consultant then told me to lose weight (roughly 15kg at the time), and that my symptoms (mainly lack of periods, pelvic pain and tiredness) would heal themselves.

This didn't happen, and during an online consultation during the beginning of Covid, I was told that as I hadn't lost weight, there was nothing further the department could do for me and that he was discharging me, even though my symptoms had worsened and I had also put on weight.

Fast forward to late 2021 - my weight was at an all time high - just several months before I'm due to get married, and the pain was the worst it had ever been and suddenly I started bleeding. Every day for at least 9 months, including my wedding day. Well, slight exaggeration... there were 6 days within those 9 months that I didn't bleed.

I thought, enough is enough and this isn't 'normal' regardless of what my weight is. I went to my GP, and thank goodness, saw the most understanding female GP I've ever come across (I think she mentioned she had specialised in gynaecology when she was a student) - she did an internal exam, tests, etc. Everything seemed 'normal', but she was uncertain whether I was given the diagnosis of PCOS incorrectly, and questioned whether it could be something else. She was amazing, and it was the first time in the past 4 years where I have felt someone understood me. At one point, I cried - don't know whether it was upset or relief that it had taken so long to find someone so helpful.

I have recently had an ultrasound, including an internal ultrasound, of which nothing unusual was shown (thank goodness!) - so now I am eagerly awaiting an appointment with a consultant at the end of September.

I just have a feeling that the first thing they're going to say to me is 'you need to lose weight' - I understand that this could be a huge part of the issue, however, I had these symptoms when I weighed a lot less.

I'm honestly scared to know what my future will hold, as myself and my husband want to start a family within the next few years. But even if that wasn't the case, I don't want to keep living in such awful pain and discomfort.

Thank you x

[MiissBehave]

i’m sorry to hear that. i know how you feel. although i’m only turning 20 in a couple of months, i have struggled with pcos symptoms for as long as i can remember but was never taken seriously and was just turned away with a leaflet and told there was nothing they could do. it really impacted on my mental health and all through secondary school and A level, i just normalised that this was how i was going to be for the rest of my life. it wasn’t until i got a new dermatologist who told me that i definitely had pcos and that i should (essentially) fight to get it diagnosed and fixed

long story short, ask for complete blood tests, covering all aspects of hormones (im sure i got like 5 litres taken out of me when i got my blood tests😭😭) and ask about hormone balancing medication. i’m currently on Spironolactone (although i haven’t been on it long, it is known to help women with pcos). in terms of losing weight, i know what you mean. it’s very difficult, especially if you have pcos and/or metabolic conditions and issues. however, one thing i did find was that when i needed to lose a certain amount of weight for whatever reason (i needed to get a period for a blood test and often when i lose a few kilos, i get my period but my weight fluctuates a lot so it can be a bit hit or miss), the Keto diet actually made a difference. although, as sad as it is to give up carbs, it really does work. of course, you don’t have to stay on it forever but if you needed a quick (ish) solution to losing a couple of kilos, i found this worked for me. it may not work for you but it’s more likely to be successful if you really do stick to it and do your research (and of course the process will speed up by doing exercise)

i’ve heard that low intensity work outs and walking are better for people with pcos, rather than HIIT, intense cardio and other workouts that interfere with cortisol levels (i think it is). also try taking supplements if you don’t already. of course, do your research as not everyone can take every supplement but i’ve started taking inositol (powder or capsules) after not taking it for a while and apparently that helps a lot

i think the main thing to know is that it’s not your fault. i’ve spent my whole life blaming myself and thinking it was my fault and that i was the one to blame but when i went to see an endocrinologist who specialises in hormones and pcos (and a VERY clever one, might i add) i asked him if it was all my fault and he said no. the odds are stacked against you. perhaps you could’ve helped yourself in little ways, but it was never your fault. i think that was the most important piece of information i took from my consultation with him

best of luck xx

[Bea61 in reply to MiissBehave]

My daughter 28, was diagnosed recently with polycystic ovaries and a 3cm cyst..via a transvaginal scan ..she now has to wait 6 weeks for follow up with ?GP...not sure why blood test wasn't done at the hospital at same time...we're obviously worried and am trying to reassure her BUT having had hormone imbalance since menstruation and having to have hysterectomy with removal of both ovaries at 45, she knows it a major concern. My periods were always heavy and came with such low back pain could hardly walk and had time off from work each time had a period. I hope someone can confirm this is not genetics linked?

[TigerH]

Wow! Exactly the same thing happened to me, I was suffering from these symptoms since2018.

In 2021 I did scan I had PCOS since then I never got the treatment and the doctor told me the Same thing I had to lose weight if not I won’t get any thing.

I’m trying to have baby, I’m tired of these doctors they’re helpless.