Needing support. Going gluten free with PCOS. Be optimistic or pessimistic?

So I'm new to this site, signed up because I really need to relieve some stress, as much as my husband and my family and friends try, its hard for them to understand how it feels and the daily emotional struggle us ladies face. Its a long story as to how I got to where I am now, It start in my early teenage years, I always suffered with extremely painful and heavy periods up until I had the HPV injection in high school after that my periods just stopped. After a year with them being absent, so around 15 years old, I went to the doctors as I was worried, and I was told, by the only female doctor I have ever seen, that she didn't know why I wanted them back as I was too young to have children. Of course, at that age no I did not want two children, but I felt ashamed being concerned about my body, had I known then what I know now I would have pushed for things to be investigated. So anyway skip to the future, got married moved into our own home and needed just that one more thing to complete our family. Just one big issue. STILL NO AUNT FLO! So, I went to my doctors who did a few tests and everything came back fine, ,I was referent to an NHS assisted conception unit, and after many tests they decided that, although my hormone levels were okay. that I had PCOS due to a lot of small cysts on both of my ovaries and I also was not ovulating. So the consultant started me off on 100mg of clomid, this made no difference, no follicles increased in size, or not enough to notice anyway so that cycle was cancelled. On to cycle 2, 150mg, again absolutely nothing happened, but at least I didn't have my hopes up as much as the first round! I also tried to take metformin but had terrible side effects and just couldn't bare to take it anymore. So was given the go ahead to start the process of inducing ovulation through injection (not ivf level) I decided to have a holiday before it started, and after finding out that the doctors think i am sensitive to gluten I have gone gluten free and it has lifted my hopes after finding out that women with pcos are more likely to have some level of intolerance to gluten and it can also affect fertility! So i decided to wait just a little longer to start my injections. it as been nearly 4 weeks now since i went gluten free, no more bloating and pain and i have so much more energy. 7 days ago i started with a bloody mucus type discharge that still hasn't gone away, i phoned the hospital Monday and told them what was happening and I am now booked in for a scan tomorrow. That's my long rant for now. Ive been trying to find someone in a similar situation that has some good news or just someone to talk to that understands. I feel like I am being torn in half. Should i feel hopeful and optimistic and risk being knocked down again or do I not get my hopes up and risk convincing myself that it wont happen and in turn jeapordizing myself! So lost right now, I know I'm not as far into fertiligt as a lot of ladies on here but after nearly three years I'm starting to struggle in my own head. Thank you and best wishes to you all.

4 Replies

  • Hello lovely, I can't relate to your specific condition, as I have infertility caused by ovarian dysfunction that nothing can be done about... I will be trying IVF (it's v unlikely to work) and if that doesn't work I'll be looking to use donor eggs. But I do understand how frightening, upsetting and stressful it is - I'm often in bits and it's always when you don't know what is next, or when it seems like you will never get your answers. I find it easier to be positive when you have your next action plan. Being hopeful is IMPORTANT so please always try and be hopeful that you are moving closer to the solution with each thing you try. It sounds like you still have other options ahead of you. And at the end of all they can try with you, if making eggs is the only main issue, there is always donor eggs to consider in the future. But I'm sure there is lots more to try before then. It's more common that you think, lots of ladies are turning to them. xx

  • Thank you for replying, and I wish you all the luck on the world. I'm trying to be realistic aswell as positive? If that makes sense haha. If all else fails i have considered using donor eggs. It's just the not knowing that's the worst don't you think? the will it work? Wont it work? Sorry for the rant haha. But thank you and all the bestime, I really hope that the I've workseen for you and you get your little miracle x

  • Ps - I didn't mention gluten - I haven't had sensitivity tested but because I have autoimmune underactive thyroid - cutting out gluten not only do I feel better but my antibodies have reduced from 90 something to 64 (normal range 0-30) and I'm due my next test where I'm sure I'll see further reduction. Stick with it as gluten is bad for lots of conditions - watch out for it being hidden in things too! I found gluten free beer on my holiday I was so pleased :-) xx

  • I haven't been tested but it was recommended by my doctor after I said that I think I might have it. I feel better too! Haven't had any bloods done, but hoping that it will be easy and I'll miraculous start OV again haha. Positive stories help!! I'm glad it has helped improve your levels. I've found a few gf restaurants tried some gf beer, it's not too bad actually haha. X