I have PCOS and Endometreosis - advice needed!

[Kate Breen]

I am 31 and was diagnosed with these conditions 6 years ago and was on medication to control the symtoms until February this year when we decided to try our luck at starting a family. I'd lost a lot of weight prior to stopping medication. I was amazed that I did menstruate as I had assumed that I wouldn't. However, since then my periods have become more and more erractic - about 2 weeks late and lasting for less and less time. Not pregnant yet. My tummy is bloating out again (so much for those smaller clothes!), but I feel okay in myself in that I'm not getting the drastic mood swings that I was experiencing before. Trying to stay optimistic and positive - doesn't always work! My GP wants to refer me to an Endometreosis specialist as he has concerns prescribing ovualtion induction treatment until he knows that my tubes and 'what have you' are clear of obstruction. Is this standard? I just want the tablets now so that I can have a Christmas Pudding - wishful thinking I know.

[Amers Or]

Hi Kate, hows it going now??? Just going through some of the forums and noticed yous post in November last! What did you end up doing??? I also have PCOS & Grade 4 Endo Had a major gynae op last June- was originally to remove a huge cyst off my left ovary but when the surgeon started keyhole he said that I was riddled with endo - had to cut me open and took the endo away that was attached to a lot of my organs - along with 1 damaged fallopian tube and a bit of the left ovary!!! It was a shock for me when I came round to be told that all of this happened and instead of the next stage being taking the Clomid tablets he said that it was very unlikely that I would conceive myself naturally and recommended IVF as being the only option! Now I am at the 2ww stage of IVF, day 3 It has been a long turbulent rollercoaster ride but am glad that I've reached this stage and live in hope Sorry I think I might have gone on a bit!!! Take care xx

[Tiger]

Hi Kate (^o^) Tiger here,

I too suffer endometriosis (yes, my tummy is constantly bloated)... and just last month via operative laparoscopy we found out that endo has blocked both my tubes and further, they discovered adenomyosis in my uterus as well.... . We are now awaiting for IVF consultation in May.

I was diagnosed with endo back in June 1999, since I suffered so　much pain and I was not ready for a baby back then, they placed me on continuous BCP after the surgery. For next 4 years (with just 6 months break in between) I went without my period. At post-op consultation they told me that my tubes were clean and undamaged by endo so I should not have a porblem conceiving... In June 2003 my hubbie and I got married and we decided to try out for a baby. So I got off my BCP and regained my period after few months. Typically my endo pain returned and it gradually got worse. With this pain and 12 months of trying without any luck, we finally consulted endo specialist....

The silly thing is I always thought that I was not conceiving because my girly-bits were bit messy with endo, so if I had another laparoscopy to clean it all out, I will be fine. So like Amers (Hi Amers!) we were absolutely devastated when they told us that we needed IVF to help us conceive.

So what I want to tell you Kate, is that Yes, pls go and get your insides checked out before they start you with drugs. Laparoscopy is never nice... and recovery is always difficult with any surgery, but I believe it is necessary to find out exactly what is going on in your body. We are glad I went through with it.

Good luck Kate and let us know how you get on.

[SallyP]

Dear girls,
Hope I can give you a bit of hope and light here.
I was diagnosed with grade 4 endo, blocked tubes, loads of adhesions and loads of surgery etc etc. I don't need to go into it - you know the story!

Anyway, I saw an endometriosis specialist who also works in repro medicine, and he looked aftre me and gave me the best advice.

Because of the severity of the endo, I had IVF straightaway, but on the scans, they could see that endo deposits had returned from previous surgery. That attempt sadly failed.

My second attempt at IVF worked. I was given an approximate date when the next IVF would begin, so about 3/4 weeks before the IVF began I had a laparoscopy to remove as much endo as possible. The consultant also told me to take cod liver oil and evening primrose oil supplements as well up until the IVF began as that also reduces endo severity and pain.

I had 1 period after the lap and immediately started on Buserelin nasal spray which I took to downreg before the IVF. This was because in my case the endo was incredibly fast growing and aggressive, so my consultant felt that if I had any more than 1 period this would start the endo building up again which could in turn make the second IVF fail.

So we had a BFP and I am now the proud mum of Jay who's 14 months old. I had a Mirena coil fitted because that has been shown to stop endo recurring and actually reduce existing endo.

So please keep your chins up, make sure you see a fertility person who has a good understanding of endo and stay positive.

love Sally xxx

[Sand]

Sally - yours really is an uplifting story. Thanks for sharing it - it should give hope.

Sandra x

[jennifer79]

hi i have just been told i have pcos , are the 2 conected or are they to diffrent condishions

[water]

Heloo everybody
I have an endo on my left ovary around 2 cm. I had three failed IUI and now I am on my first IVF. Praying that it will work this time. Does anyone know about mild endo and IVF succes chances.

[Sand]

Hi Water

Just a quick post from me to say Hello. I hope you find the Site supportive and informative ..

Sandra x