The feel frustrated and confused - PCOS related

[MedicalMystery1]

First time poster, long time lurker. Sorry, it’s a long one.

I’m 23 and found out 3 years ago I suffer from Polysystic ovarian syndrome (definitely syndrome this past year).

I attended appointment with a consultant with regards to not having a menstral period for almost a year now and suffer daily with chronic pelvic pain.

The appointment only lasted ten minutes of which the consultant gave me my blood results taken 3 months before (really high tostosterone) and advised to stop taken mini pill which I was originally put on to regulate my menstral cycle. I asked the reason I was to stop, which he advised he didn’t have enough time in the appointment to go through everything but with my hormone levels the way they were 3 months ago and lack of period, I can’t conceive naturally anyway and by taken the tablet is only adding to the ones 30 odd I take for pain relief daily.

I didn’t have any time at all to take this in or ask any questions before being taken by a nurse to get blood work retaken.

Follow up appointment isn’t until April!

AIBU to feel frustrated and confused regarding my future and by the lack of support from consultant/family? My family have expressed disappointment that I haven’t ‘been my usual self’ over the festive period.

OP, there is a brilliant forum here just for women with PCOS. They are amazing and so supportive and will be able to answer your questions really well:

forum.verity-pcos.org.uk

My diagnosis was a bit different because I hadn’t taken any contraception for many, many years while doctors insisted there was nothing wrong before the diagnosis.

I do have an idea what is happening here though. Because you’ve been taking the mini pill your hormones and cycles are not what they would naturally be. So they will wanting your body to flush out the hormones before doing more investigation.

Are you looking to conceive now? If so at your next appointment I would except them to arrange you a scan and a series of blood test over a month to several months to see what they’re doing. Potentially they might put you on Metformin too, some people find that eases the symptoms.

Unfortunately with things to do with PCOS, and with infertility in particular it is a very slow and frustrating process because they only have so much time each month to find out what is going on.

If you’re not TTC unfortunately more often than not you’ll be told to just put up and shut up and come back when you want to have a baby.

Good luck, I hope you get the answers you want. I had many friends from that Verity discussion forum and all but two had babies and the two that didn’t also had other problems with TTC apart from PCOS. I have 3 all from fertility treatment and may be going for one more next year.

I was 15 when gp first suspected PCOS but it took until I was 20 and a lot more assertive for them to make a diagnosis.

Thank you so much for the link to the forum, I’ve had a quick look and looks like I will get a lot of information and support

I am thinking the same regarding coming off the mini pill and getting the hormones out my system. I just wish they could have explained this and not simply because I ‘can’t conceive anyway’. I’ve never been on the pill for contraception purposes it was always to minimise my PCOS symptoms and try to regulate my period.

Ideally me and DP would like to TTC but right now my pelvic pain is really bad and DP isn’t keen on risking the pelvic pain getting any worse

I’ve had 10+ ultrasound scans in the past year due to GP suspecting ovarian torsion on numerous occasions due to the amount of pain I’m experiencing. Left ovary is twice the size it should be due to being very polycystic but except from that, everything is fine.

Thank you and good luck for your future fertility treatment

If I was you, I would tell them you’re TTCing anyway. All the tests and scans and rigmarole take so long, by the time you’ve done all that, you’ll probably be ready anyway if it’s something you want to do in the not too distant future.

Hi! I’m also a pcos sufferer. Mostly I’m trying to get effective treatment for my symptoms (hairiness, hair loss and acne) but want to have a baby at some point.

If you are in pain surely they should treat you for this? Have they not suggested anything? I would say put your foot down and say you are in pain and you need treatment for this. So often women are told to just put up with pain that no man would put up with. I would also ask to be referred to a specialist.

I agree with what they are saying about the pill, however I’m not sure why you were on the mini pill anyway. The pcos friendly ones are Yasmin and dianette, they are anti androgens which lessen pcos symptoms ( for me they worked wonders for acne) but they aren’t a solution when you want to have a baby (which is what I’m trying to sort out now).

Also - I do understand that the current situation is that if we’re nlt trying to conceive they just tell you to put up with it. But that is NOT right and we should all be pushing for treatment that isn’t just fertility based, we are worth more than our child giving qualities and deserve quality of life in more ways than just having babies.

Please don’t just accept that they won’t do anything if you’re not trying to conceive, it’s not acceptable. Continue to push for the treatment you deserve.

Are you seeing a private consultant or gp? I am confused as to why you are saying follow up isn’t until April. I think you should push to see an endocrinologist

If you are able to afford it I would try and get a private consultation. They will spend the time with you, do all the correct tests and make sure you have the right treatment. You could also look into a private health insurance plan from one of the providers which might make it more cost effective. I suffered for 10 years with horrendous and severe pain. like you, got a 10 min NHS consultation where they didn't even do the right tests. They put me on a pill that was actually making my problem worse because they didn't diagnose the problem correctly . Saw a private consultant it's the best thing I ever did, am pain free and it's totally changed my life. Very unimpressed with the NHS.

•brighton, nuttella, so so agree with you on that. It’s a woman’s illness so it goes straight to the bottom of the pile. You’re just told to put up or shut up.

augusta2012

Thank you, we would like to try to conceive and if the process takes a while, I guess we are probably best telling them we are wanting to TTC just now.

brighton2

The only treatment I am getting for the pain is pain relief, I’m on maximum doses of tramadol, dehydrocodiene, paracetamol and diclofenac and take oramorth upto 4xdaily and still in pain .

I’m not entirely sure why it was the mini pill I was put on, it’s the pill cerezette I was taken.

It was NHS gynaecology I seen about the PCOS as that’s were my GP referred me to but the consultant said he also works in the endocrine centre. I queried the appointment of April as the whole point I was referred was due to the GP not having any other solutions and reached what we felt was the maximum pain relief. I’m currently saving to go private as don’t feel NHS is doing enough

nutellalove

It’s NHS that I’m seeing just now but saving up to go private as I want to make sure I definitely have enough for all the tests/treatment. I wouldn’t want the heartache of getting so far then money running out.

I hadn’t thought of health insurance so will have a look into that option.

augusta2012

Unfortunately, I agree too with regards to put up and shut up . One time I was in so much pain which the GP suspected ovarian torsion, I was sent straight into hospital and admitted. It took them 56 hours from agreeing to do emergency diagnostic surgery to find out if the pain was due to ovarian torsion. When it was confirmed it wasn’t, I was sent home 12 hours after surgery with the same pain relief I went in with

My family just don’t seem to understand why my mood is so low and why I’m fustrated at the whole situation.

The gynocologist is for fertility issues. The nhs are failing women with pcos issues. Pcos is a hormonal issue although it also affects fertility. If your problems are to do with pain from pcos you should be referred to an endocrinologist.

I only found this out recently and so I booked a gp appointment and asked for an endocrinologist referral. I was told that’s not what they usually do... even though that’s what it says is appropriate on the nhs website.

The doctor was very angry with me and said I’d insulted her profession. Just because I knew what I wanted and was assertive. But she reluctantly agreed to refer me.

I would go back to your gp and ask to be referred to an endocrinologist. You deserve to not be in pain.

Have they checked for endometriosis? It’s not normal to be in pain all the time.

cafeaulait27

Sorry for the delayed response, I was admitted back into hospital due to pains I’m experiencing.

Unfortunately, once again I’ve been told, I’m on lots of pain relief and they don’t have anything else I can be sent home with .

I’m due to see the NHS pelvic pain team at at the end of February. I honestly don’t feel like I can wait. Do Doctors honestly expect me to se signed off work for another 2 months?

Thank you, I wasn’t 100% sure the difference between gyny and endocrine with regards to PCOS if it’s not for fertility treatment. I will definitely get onto my GP and ask to be referred to the endocrine centre and not gynaecology.

I hope everyone is well and thank you all for the support.