Experiences Please.. Suspected PCOS and Endo Referral

[MermaidTail7]

Hi All, am looking for some advice/experiences from you wonderful and knowledgeable ladies. Have been TTC since Sept 2016 after coming off microgynon. First three cycles were 30 to 33 days, but since then have got longer, with current cycle 58 days and counting. GP has been very understanding and supportive, initial bloods all came back within average/normal range, and have had ultrasound and internal scans which came back with an anomaly with one of my overies, which "could be PCOS".. I have been referred for further tests at a hospital Endo unit (due late summer), but thanks to a very unhelpful consultation with a different GP, I have no idea what to expect from this appointment, or even what tests they might want to do.. Any experiences from you ladies would be very much appreciated...

I could have written this. Been ttc since last January and periods started at 30 days, then 32 days then 35 days and last cycle was 57 days. I met my consultant last week who suspected I had pcos (apparently everyone on the scale although 20% get no symptoms) and then decided it's more likely it's endo. He said it won't show up on any scan and the only sure way to diagnose it is an exploratory op. The had a blood test, internal examination and an internal blood test. Op booked for 3 weeks time. Good Luck!

hi OP
how are you getting on? When is your referral appointment?
I also could have written this, my story is...
came off pill in December'16 to see what my natural cycles are like after being on it for 11 years, not TTC until next spring time once we're married, I just heard the pill can take a while to come out of your system so thought I'd give myself a head start! (I like to be organised lol!)
My first cycle was 47 days, second 35, third 62 and now I'm on CD92 and hoping AF will arrive at the weekend with the help of nortiserone that I actually had to BEG the doctor for last week.
I had an ultrasound in April and it came back with suspected PCOS and Endo, so like yourself I'm awaiting consultation from a gyno which happens to be next week, 3rd August, and I can't wait to finally push them!
My GP's have been extremely unhelpful for the most part, nobody seems to know how to help me and their only suggestion is to put me back on the pill which I am outright refusing because that'll just mask my problems! Let me know how you're getting on xx

Hi littleemma1, i'm in exactly the same boat as you currently: CD91 and got my consultant appointment in a couple of weeks. My usual GP has been really helpful and supportive, which I'm very grateful for (I had one meeting with a different GP to get my scan results which was so unhelpful and upsetting that I ended up complaining to the practice manager!). I think my scans suggested more PCOS than Endo, but as my only symptom is lack of period and 12+ follicles in each ovary I'm currently driving myself mad spotting other PCOS symptoms everywhere, even whee they might not exist (hair growth, weight gain, tiredness) and really it could be anything. Really I'm hoping to be prescribed clomid or something similar to kick start ovulation, as I can't have the CD3 and CD21 blood tests to check my hormone levels properly without and actual cycle! Good luck with your appointment on the 3rd, and keep me posted!

Aw I'm pleased your GP has been supportive!
Yup, I'm the same with the CD blood tests. They didn't really say when I got the results which one was more likely so will just have to see what gyno says.
I would ask for the nortiserone to try and kick start your period if it's getting unbearable. My pains when it goes on for this long are which is why I asked.
I do actually have some of the other "typical" signs of PCOS, the two biggest being weight control and fatigue. I'm also super hairy 🙈😣
Will keep you posted! Xx

Thank you for the recomedation, I'll add that to my list of things to ask the consultant. The wierd thing is I'm not getting any pain or discomfort.. I didn't really suffer much with menstrual symptoms anyway even when my cycles were a bit more regular- mostly cramping, grumpiness and a desire the eat constantly for about 2 days before AF arrived, and I could manage those with a bit of swimming/yoga/pilates (still ate all the carbs and refined sugar tho!). I am trying to keep an eye on changes to my CM, as that can be a good indicator of a cycle, but I'm not really getting much to go on.. Have just started taking evening primrose oil as some other MN ladies have said that can improve CM..

I think the pain with me is the Endo side of things, will have to wait and see what the consultant says!
Aw Mermaid you should see the list of supplements I'm taking at the mo...
Vitamin C, D, Primrose and Starflower oil, folic acid, agnus cactus, zinc and inositol - I literally rattle! lol.

How did you get on with your appointment Littleemma1?

Hey Mermaid!
Sorry, I was gonna update you I've just been busy at work 😩
It was ok. Didn't quite get the answers I was looking for but did get some!
I'm technically still undiagnosed as there isn't enough evidence from the scan to say whether or not I definitely have endo and pcos however I tick 2/3 boxes for pcos 🤔 however it could also be post pill amenorrhea which is where my body doesn't know what to do naturally since coming off the pill as the hormones over the years have suppressed it so much it's now confused and "dormant"
They've given me something called Metformin to try and regulate my hormones and kick start ovulation again to try and then in turn get my periods back into some form of cycle. I have to go back for another ultrasound which they'll let me know the results of but they don't want to see me again until December/January to give my body 12m pill free xxx

I'm glad you got some answers at least.. I'll keep my fingers crossed for you that the metformin starts to kick start your cycle.. I think that is was my DSiL was given when TTC for 2+ years and my Nephew is 10 now!!!

When is your appointment?
I'm just hoping it works so I won't need further treatment! Xx

My appointment is later this week, which will be a year from when I came of the pill. I was feeling fine about it, but now I'm getting really nervous and scared that they won't do anything... Your experience has reassured me a bit though xx

Good luck with your appointment this week. If at all possible do not attend on your own (such can cause considerable nerves and they should see Mr MermaidTail7 as well).

You need a diagnosis first and foremost.

Write down any question you want to ask well ahead of this time and take notes. Do not leave there thinking oh I should have asked about x y or z. If they suggest further tests which they will do ensure that you are fully conversant as to why they are being done. Knowledge also is power.

BTW I never had a cycle to speak of either so all my blood tests were done according to calendar days (therefore you do not have to wait for a cycle). This gave them too a good picture of what was happening over some months.

That's a good point Attila, I took OH and it was good I did as I wasn't taking all of it so he was! I also had a list of questions, things I wanted to know etc in case I lost my train of thought but I ended up not needing it.
Honestly Mermaid my consultant was lovely, there was also a female nurse there as well to help explain things as consultant was a he, not that I think that makes a difference, I just feel she helped :)
Keep us updated, and fingers crossed for you xx

Thank you Attila and Littleemma1..Mr Mermaidtail is traveling with work next week (last minute thing, and not something he can get out of🙁) but the list of questions and notes is a good idea which I will spent some time putting together this week before the appointment.. Fingers crossed ladies!

I've been through this process and now 34 weeks pregnant. Ive been through the can I/cant I, what if I cant have kids thought process and worrying what they would tell me in these appointments! It is a rollercoaster so be prepared for pre nerves and maybe post dissapointment- often theres not one straightforward answer.

Don't expect firm answers at your first appointment, its a fact finding mission for them. They will ask you all your history again, symptoms etc and will undoubtedly ask for further or repeat blood tests to be done at some point, thyroid, hormone profile, blood glucose, prolactin, and possibly others. Be prepared for some quite personal questions (although by now your probably past that!). They may or may not examine you. PCOS is a cluster of symptoms so examination is often unneccesary. They will have already or will check your scan results in your appointment. They will put all this together and devise a plan with you, for me this was often 'well see what your blood results are and go from there'. I have PCOS and suspected endo. It also transpired that I had a prolactinoma (benign tumour, dont worry its not common!) and this was messing up my hormones. Started tablets and concieved a few months later.

I suppose im saying there are many many causes but also many many treatments so dont be disheartened, be prepared to not have definate answers all the time and to try different things. Hope that helps!!

Aw yes, the personal questions regarding sex life 😳 Thankfully we were prepared for those ones!
SIB it's good to know that it's normal not to get "answers" straight away.
For me it was/is about finding out what causing so much pain as mine gets so bad I'm off work, and because I've had so many absences over the past couple of months I have to have a "disciplinary review meeting" where they'll decide whether or not I'll get a warning 😔

Mermaid have you got anyone else that can go with you? Xx

Thank you SIB, it's great to hear someone further along a similar journey to Littleemma1 and I who has a happy outcome... Good luck with Bump!! I'm fine with personal questions and stuff, I accept that if I want to get the best possible outcome from all of the appointments that I need to give as detailed and clear answers as possible to help them help me.

That's awful what you are going through at work littleemma1 xx

Littleemma1 its awful isnt it having to be off work, some days I would barely drag myself through then just crash when I got home! Psychologically and physically draining. I've worked part time (luckily I was able to reduce hours) for the past 5 years and honestly it has been the best decision I made. Had barely any absences from work, don't feel the pressure to get through 5 days and have more rest. I also found daily magnesium, calcium and vit D improved my symptoms along with an antidepressant that helps with PMS.

Good luck ladies, there are plenty of avenues to explore x

SIB I've tried working out with DOH if I could go part time as I think I'd manage better but we can't afford it 😔
When is your little bundle of joy due?
Mermaid it's good you're going prepared! How old are you, if you don't mind me asking? I'm 25 fast approaching 26 and doctor was pleased with my age as he said we have loads of time. I'm not willing to let them pussyfoot around me for years though just because "I've got time" xx

Due mid september and I'm 33, I didn't get taken seriously really until I started asking about fertility and they looked at my age! So you do right in pushing it. I was very very lucky we could manage, don't forget you pay much less tax/NI etc part time too

I'm 35; DP is eight years older than me.. We met later in life and had alot of living to do before we felt we were ready for children... A few people have berated me for leaving it so long before TTC, but in all honesty children just weren't ever on either of our radars until about two years ago..

Mermaid it's whenever you feel ready! A lot of people say we're too young for considering it now, but we have our house, getting married next year and both in stable and well enough paid jobs. Although we're not meant to be TTC we don't actively not 😂🙈 we're naughty when we want to be and are going with the attitude at the moment that if it happens, it happens and is meant to be! Xx

Same here mermaid, my sis is 38 and just had her first

Thank you ladies xxx