Unhelpful consultant - PCOS - endo - trying to conceive please help

[Lilmama06]

Hey

Looking for some advice if anyone can offer some as I’ve been feeling really low the last few months and don’t know what to do for the best. Myself and partner have been trying to conceive for 2 years. I have a diagnosis of PCOS but feel pretty sure I have endo too (have all the symptoms but always just thought it was my PCOS) although my consultant won’t do any tests just said if I do conceive I’ll find out after?

I have suffered with corpus luteum cysts continuously the last three years and had a couple of hemorrhagic ones more recently. The last one was 6cm and I ended up in hospital for a few days with the pain.

In spite of the above my consultant doesn’t want to find out what is going on with me just wants me to take clomid which I really don’t feel is right for me given the above. The advice leaflet that came with clomid said not to take if you suffer from cysts like this. I’ve said this to him but he won’t review the decision again.

I’m at a loss because I desperately want to conceive but not sure this is the best choice for me? My consultant in general is poor the appointments last all of 5 minutes and in 2 years I’m no further on with treatment really and don’t really know what’s going on with me. I don’t even feel like I’ve had the right tests etc.

If anyone has been through something similar I’d love to hear your experience. If anyone knows of any tests I should request that would also be great.

Thanks in advance if anyone can help and apologies for the lengthy post. Just feeling rather lost at what to do now.

Good luck with your journey to parenthood sending you all love and baby dust.

X

Also sorry should mention... I’m in pain a lot of the time, I’m extremely bloated for 2 weeks of the month and suffer with pain and a pins and needles type feeling on my right side throughout the month. I always bleed extremely heavily with huge clots (sometimes bigger than my palm) and my urine just looks like pure blood during my period. The symptoms go on and I have detailed this to my consultant and he told me to tell my gp?!

I have PCOS and I found a podcast called PCOS Diva very informative. I could not find much information on it before listening to that. One thing I took from it amongst a lot of other things is that PCOS isnt that well known about by most doctors so you really have to advocate for yourself. Insist on any tests you want. I don’t know anything about endo I’m afraid. There are a number of more natural options for PCOS if you don’t want to take clomid eg inositol

Hey. Firstly sorry that you are going through this. Secondly get a new consultant ASAP. If you have all the symptoms for Endo then you should be offered a laparoscopy and if found they can remove what they can and check your tubes at the same time. Especially if you have been trying for 2 years. I have stage 4 Endo and conceived my daughter 4 years ago after a lap and excision. Unfortunately my Endo has gotten a lot worse and we can’t conceive again and now am booked for a hysterectomy. So please please demand another consultant and a laparoscopy ASAP. Wishing you luck x

Sorry you're going through this. Agree with Nurselife2020 you should absolutely look for a new consultant.

I don't know much about PCOS but I've just had a laparoscopy. Endometriosis was diagnosed and removed (along with cysts and fibroids and a tube was unblocked). They were pretty sure the endometriosis was there after seeing spots on an internal ultrasound but it won't always show on that, however the laparoscopy can both diagnose and often treat the endo. Following the ultrasound I had had a HSG test to check tubes so knew about the blocked tube.

I was moved onto all of these tests pretty quickly after all bloods coming back fine, my age was a factor but even if I was younger I wouldn't be happy with the approach your consultant is taking.

Best of luck with it.

Nurselife2020, sorry to hear about your hysterectomy.

@Lilmama06 Go back to your GP and tell them you’re unhappy with the consultant and explain why. They’ll refer you to another hospital and therefore you’ll get a new consultant.

Most GP’s are happy to do this especially if you explain how upset and anxious it’s making you.

Good luck x

@Veenah
Thank you, it’s been a rough ride but I am thankful for my healthy beautiful daughter so I always keep that in mind. I’m glad they performed a lap for you and got your diagnosis. Best of luck with everything and to you OP x