GP refusing to refer for PCOS scan despite having symptoms

[acaciabluebell]

Hi everyone, my husband and I have been TTC for a year without success. I have concerns about PCOS due to the following reasons:

• Day 21 bloods showed I didn't ovulate.
• Irregular cycles ranging from 22-35 days.
• Significant weight gain (BMI of 30) and central obesity.
• Difficulty losing weight
• Hair thinning
• Infertility

However, my blood tests showed normal testosterone levels. I don't have any excess hair or anything like that.

I asked my GP if I could be referred for an internal ultrasound and she flat out told me no. She said the ultrasound request would be "rejected" as I am having periods every month, and my blood results were normal.

I don't understand this. I've read that to be diagnosed with PCOS you need 2/3 of the criteria. I have 1/3 so far (irregular cycles). The second diagnostic criteria for PCOS is having cysts on the ovaries, but if I can't even get a scan then how I could get tested to see if I have PCOS?

I am so frustrated. My fertility referral is taking forever - we started tests in December. Its been 3 months since then and the referral hasn't been completed. We are waiting for my husband's semen analysis appointment and GP has said that if it's abnormal, we may have to wait another 3 months to do a repeat SA. That means it could be June before the referral is even sent! And after that, I've been told it's up to a 12 month wait to get an appt with the clinic. That means I may be waiting until June 2022 to even get referred for an ultrasound to see if I have PCOS. That's a whole year and a half wasted.

Is this normal? Is there any way around this? I'm willing to argue with my GP but I don't really know what to say. I don't understand why I can't be referred for a scan while waiting for the fertility clinic. My GP kept repeating to me "I can't do anything, you have to wait for your appointment with the gynaecologist". Is the gynaecology department and fertility clinic the same thing?

Just to add, these were my blood test results

Day 3 LH: 3.8
Day 3 FSH: 7
Day 3 Testosterone: 0.3

Day 21 progesterone 25.3 (supposed to be 30+)

So my LH and FSH ratio isn't the classic PCOS profile either

Sorry testosterone was 0.8*

How long was the cycle you got your bloods done on? If you had a longer cycle that month the 21 day bloods could have been done too early, or possibly too late if you had a very short cycle.

I have PCOS, my LH and FSH were classic PCOS but my testosterone wasn't. My cycles could be 24-46 days and I also wasn't getting pregnant. Had awful cystic acne too.

What is the plan after the repeat SA if all is fine?

Sorry when I say what's the plan, I don't understand what the referral is for. If the second SA is good have they said then they will send you for an ovary scan? Or to the fertility clinic for a standard fertility investigation?

@EnglishRain It was a 33 day cycle, I got the blood test done in the middle of my luteal phase on 6dpo, and my period came exactly 6 days later. So I timed it correctly I think.

The plan for after the repeat SA is that the GP will send the fertility referral off. Nothing was said about any scans. I asked if I could be sent for a scan while I wait for the fertility clinic appointment and she said no.

Also... she kept calling it 'the gynaecologist", I asked her if they were the same thing and she said yes 😕 Confusing.

As well as the PCOS thing, she also said I have symptoms of Endometriosis but I have to tell "the gynaecologist" my symptoms as she couldn't do anything for me. I'm just concerned about the super long wait before I can get any help or tests for either of these things

The gynaecologist is the type of doctor you see for fertility issues, it sits under that specialty in a hospital which is why your GP is saying 'the gynaecologist'.

There is something called patient choice which means you can choose which hospital to go to. Some hospitals have longer waits than others - I work in a hospital and didn't want to have fertility treatment there so went to one a bit further away. Conveniently they had shorter waiting times, but sometimes waits are similar everywhere.

I empathise, it feels like a massive and frustrating journey. We started TTC June 2017 and DD was born July 2020. I got so frustrated with everyone around me having babies knowing I was stuck waiting for help. It is likely the hospital will assess you and do things like internal scans once you are referred but 12 months sounds a very long wait, partly covid I daresay. I had a diagnostic test called a hycosy as part of my assessments despite having been diagnosed with PCOS beforehand (which they also confirmed themselves via another scan). I then was given Clomid and had to keep going back for internal scans of my ovaries the first couple of cycles, and then just blood tests each cycle I was on it.

Even if you did get a scan now and diagnosed with PCOS, it is unlikely that your GP will be able to do anything to help with the fertility issues, it will be the gynaecologist who can treat the infertility. Hope you can be referred soon.

@EnglishRain Thanks so much your explanation really made things clearer for me! Yes, the long wait is the most frustrating thing for me. It would feel much better if my GP could prescribe me Clomid or Metformin (for e.g) while I'm waiting the 12 or so months. But it seems like I will have to wait for the fertility clinic to do this. So frustrating because if I'm not ovulating then TTC for 12 more months before getting help is just wasting time.

Controversially my GP did prescribe Metformin for me, but only because I was seeing the gynaecologist in a month's time and I had been diagnosed with PCOS. She wouldn't give me clomid though. She is retired now but an amazing GP, quite prepared to push the boundaries on things if she considered it worthwhile in her professional opinion, when other GPs wont. Metformin is not licensed as treatment for PCOS, it is used 'off label' and that's why the majority of GPs won't prescribe it, they'd rather it come from a gynaecologist.

I have read instances in years gone by of women getting NHS clomid from a GP but it's definitely not best practise. Also, if you don't have PCOS you put your body through something completely unnecessary. If you have endometriosis and your Fallopian tubes are partially blocked, you are much more likely to have an ectopic pregnancy too. The reason they were scanning me with the clomid is because some women release multiple eggs even on a low dose too, and a GP doesn't have the facilities to scan you like a hospital do.

It's that 12 months you need speeding up - could be worth asking your GP what the waits are at other hospitals? They will be able to find out, or you could ring the hospital and ask yourself. Some have an outpatients booking centre, or contact the gynaecology specialty. You want to ask them 'how far out you are booking first attendances in outpatients within gynaecology'. They may ask what the referral is for and say infertility. If they ask why say you are deciding which hospital to be referred to, ie. using patient choice.

To be fair you also want to ask how far out they are booking follow ups! It's possible they will see a first attendance quickly but have much longer waits for a follow up.

Feel free to PM if easier

@EnglishRain you have been a lifesaver today, so so helpful thank you. I think I will ask about referrals to different hospitals, definitely. My next appointment with my GP should be around the beginning of March (after DH's semen analysis) so I'll see where I stand then. Thank you ever so much!