How did you get diagnosed with PCOS??

[Grace2296]

I’m having a difficult time with my cycles since coming off the pill in August. They have been longer than 35 days and I’m currently waiting for this month’s to arrive (I’m on day 38) 😔 it’s making trying for a baby really difficult. They have never been this long before. I have very oily skin and acne all on my back which again, I’ve never had before. Could I have developed PCOS whilst on the pill? Please share your stories and successes.

Any thoughts? X

I was diagnosed eight years ago at 24. I’d had horrible periods, fainting, vomiting with pain and cycles anywhere from 16-48 days. I’d tried going to the doctor multiple times but he brushed me off and told me that was just how periods were, so I stopped going.

Then I developed costacondritis(?) and had to go to OOH, so completely unrelated! The female doctor there was examining my abdomen and noticed a line of hair, like men have, on my lower abdomen, and asked about my periods. She referred me to gynaecology and the rest, as they say, is history!

@AlohaMolly thank you for replying! Sounds like your really suffered. I don’t have symptoms as bad as what yours sounded, I do have a very faint line of hair on belly though! The only symptoms I’ve had are irregular periods and oily skin. I’m not sure if it’s too soon to go to the doctor x

I'm very similar to you @Grace2296. I have been off the pill since June last year and my periods are very irregular. They have been 27 to currently on day 73 so I'm not sure if this is a missed period or just a long cycle!!! I've had really bad acne on my chin and I'm defiantly hairier then when I was on the pill.
It's very stressful to try and get pregnant as I just don't feel like I know when I am supposed to be trying. I feel like I haven't been able to have a 'shot' at even getting pregnant because they are so irregular!
I have spoken to my doctor and he said to have blood taken on day 1-3 of my cycle and he can run other tests then on cycle day 21 to see if I am ovulating. He said to also then get another set done at the same time that he can test for other things. I haven't yet managed to go for the bloods for day 1-3 of my period but might just go and get the other ones done as I don't know when/if my period is going to come.

@other89 really sorry you’re having a tricky time! I think it’s worse because we have these great expectations that when we come off the pill it will happen and everything will return to normal yet it is very different and very stressful! I might book and appointment at the docs this week and just hope they agree to tests! Thank you for getting in touch! Hope it all gets sorted soon! X

I had every symptom in the book, I was a classic case. Hair on face, overweight, spotty, periods either 2 months or 2 weeks apart.

I had an ultrasound scan at about 25 which confirmed the cysts. I then conceived naturally.

Trying for my second took 4 years, I again was scanned twice as the first time I had no cysts and no one could believe it. After the second scan I was given metformin which resulted in my second pregnancy.

Third, also fell naturally. So for me diagnosis was a combination of symptoms and scans.

I was diagnosed in 2017 after going to A&E thinking I had appendicitis, turns out a few of the cysts had burst which caused pain, inflammation and free fluid in my abdomen.
I'd been to the doctors with irregular periods but as mine were just within the threshold to be classed as normal they sent me on my way!
I suffer with acne and abit of excess hair growth on my face but nothing that ever made me think PCOS.

Alot of people say you always have PCOS but I disagree, I think it can develop although not too sure whether the pill would be the cause but I suppose it's a possibility.

Hmm perhaps the pill was masking your symptoms, as most pcos symptoms are caused by high levels of androgens. Some pills also contain small amount of anti androgens
How long have you been on the pill?

I have ‘lean’ pcos. Always been very slim, but very oily and acne prone skin, as well as severe hirsutism.
My cycle was slightly irregular before but having taken inositol as a supplement it’s completely improved. I never had such a long cycle as you though
I’ve never taken the pill

I think it can at times be more severe than others. When I had the scan with no cysts, I had to go back at another time in my cycle because it gave them more time to develop.

My hair also came and went, it was very severe before my first pregnancy and lessened afterwards even though my periods became less frequent.

Yes I was also going to say the pill may have been masking symptoms.

I have PCOS, diagnosed when I was TTC by a scan showing cysts on the ovaries. I also have acne. No other symptoms, I’m not overweight or hairy. However I do have underactive thyroid (also diagnosed while ttc) which can go hand in hand with PCOS - so do get tested for that too.

If you are over 35 they will do tests after 6 months’ ttc. Under 35 it’s a year. But this varies from area to area so ask your GP.

I was diagnosed at 21. I'd had severe lower tummy pain and vomiting and ended up going to OOH. They suspected I was pregnant and perhaps having an ectopic. Went for a scan, no ectopic pregnancy thank goodness but ovaries covered in cysts. They suspect some had ruptured causing the pain.

I'd been on the pill since I was 15 for acne then later contraception so I expect that masked things like irregular cycles. I have always been spotty and a bit overweight.

I came off the pill at 30 to TTC and was pregnant in three months. Didn't go back on the pill and noticed hair on my face for the first time, luckily I'm fair and it isn't much. Perfect skin in both pregnancies for the first time ever. Second time TTC I was pregnant in two weeks and my cycles were 28-36 days in between. I am really fortunate not to have struggled with fertility. On the mini pill now and have ok skin but I am 35 now so hormones are probably changing!

I think I could deal with the acne and the hair if only I thought I was ovulating regularly but I don't think I am. If I had known this I would have off the pill sooner!! :(

Nice to hear some pregnancy successes despite PCOS diagnoses! I am 23 and have been trying since we got married in August. I just presumed that my periods would go back to 30 day cycles 😔 desperate to resolve it but don’t want to go to the doctors for them to turn me away! X

@other89 I wish I had come off it sooner too! Every month drags!

One thing to consider is that just because you have PCOS doesn’t automatically mean you have allow fertility. I tried with my previous partner for 6 years. Thought it must be my PCOS. Met my DH and was pregnant in 9 months. I would start temping if I were you, I managed to find out that On average I would ovulate on day 36 rather than the standard 14.

Yes for me it wasn’t the PCOS that caused ttc issues, it was the thyroid. Once I got put on thyroxine I got pg very quickly.

Yes, as others have said PCOS doesn't automatically mean you'll suffer with fertility issues. I didn't, though I fully expected to. I was told to expect it to take me two years and that I'd probably need clomid and/or IVF. I didn't, either time I fell quickly by normal standard especially second time around (first cycle). I was taking metformin both times, I should have mentioned that, bjt not specifically for TTC, to try to help me lose weight. I wasn't obese but I was overweight and the doctor said it'd help, and in turn help me to ovulate regularly if I wasn't (as wound the losing weight). Even the first time it took me 3 months but that's perfectly normal especially after coming off the pill.

At your age even worth no PCOS they'd expect you to be TTC for 12m before they'd offer any help in this area as anything up to that is considered normal. With PCOS they may offer help earlier, it really depends on your area and your GP tbh.

SO many typos. Sorry!

I think it’s worth asking for tests, there may be some the GP is willing to do now.

Also there are supplements that can help - myo inositol is often taken by women with PCOS trying to get pg. DIM is another one, more recommended for acne but also worth a look.

I was diagnosed 9 years ago when pregnant with my 2nd child, they suspected ectopic and had a laparoscopy to check the location if the pregnancy, due to a large cyst on my ovary and they couldnt tell if it was the baby or a cyst. Since then ive had another laparoscopy and another baby. It doesnt cause too many symptoms for me, slightly heavy, very painful periods that only last 4 days, since coming off the coil to ttc my cycles seem to be irregular. I also have the line of hair on my lower tummy and every once in a while i get excruciating pain in one side (usually left) where a large cyst grows and bursts. I had an ultrasound maybe 2 years ago and had a 4cm cyst on my right ovary and it wasnt deemed large enough to warrant surgery. So far for me there have been no fertility issues, this is cycle 3 of ttc no 4. Hope that helps!

Wow thank you ladies that has made me feel much better! Hopefully this month’s AF will arrive soon and I can start temping! Thank you all! Xx

Thanks @Grace2296 @AlohaMolly @SisterAgatha @tiddlerthefish @minipie @namechangepls5 @EastMidsMumOf1 @Letthemysterybe That has been a great help. I know that it probably can just take people a bit longer because of the PCOS but doesn't mean that everyone will have issues. I just feel because I'm waiting nearly ages for a period (nearly 3 months this time) that I have less chances than if i were ovulating every month!!
@namechangepls5 can you just get that supplement inositol by its self? Does it have another name? Did it take long for them to regulate?

@namechangepls5 I was wondering the same about the inositol? X

Hi Grace!
Seems like you are in a similar situation to me. I am convinced I have pcos but pushing for a real diagnosis as GP's are not very clued up it seems. I have been off the pill since August and have had varying cycles anything from 22-37 days and then my periods just stopped! I'm now on cycle day 70... so need to know what's going on. I've requested all the bloods that I needed and they said they've come back as normal including thyroid and also asked for a scan which they did and said one ovary is polycystic but the other is fine. They don't diagnose pcos from a scan alone. Anyway.. this was a while ago. But I went back to my gp a few weeks ago and they've now referred me to a gynaecologist to see what's going on and if there's further issues I can be referred to a fertility clinic. Honestly it's really hard to get diagnosed with this sort of thing but very frustrating with ttc because it's difficult to know if ovulation is even occurring. Sorry to go on and on! Any questions just ask. I'm 23 and ttc baby 1 but a relaxed approach. Xxx

@swirls3468 it seems we are in the exact same position. Do you think it’s worth me going to the doctors at this point? Did you have any other symptoms? Xx