My story - PCOS to start of IVF.

[tazza_uk]

Feel free to comment/ask any questions.

Sister diagnosed with PCOS and advised me to get checked. Diagnosed in 2007 and put onto Metformin by my GP for the nasty effects, acne, hair growth, problematic periods and weight. I was very lucky as I have not had many of the side effects from the medication. There are a few things I now have to avoid. At the time we said if we fall pregnant then great if not still plenty of time. The problem with PCOS is lack of periods. Maybe 1 or 2 a year, so TTC was difficult. Married in 2010 and still no closer to that positive test. Kept delaying visiting the GP. Eventually we went to our GPs to enquire about tests for fertility problems. He referred us in April 2012 to the local clinic.

Over the course of the next 6 months we had tests done. Lots of problems/bad reactions. When the results came back the first consultant said straight to IVF. I wanted a second opinion. Second consultant, head of the department, said the same. Felt like we were constantly fighting the medical staff for any result/appointment. Was informed then that the waiting list was a shocking 3 years, told to go away and keep trying until September 2015. However, received the great news that the waiting list has drastically reduced due to the extra funding. We are due to start this month.

So..... here we are, we have our first appointment later this week to start on the journey of IVF.

I guess the moral is never be afraid to ask for clarification or a second opinion. I found it very handy to have a little notebook with me to scribble questions etc and made sure they were fully answered to my satisfaction.

[paeroking]

Hiya tazza, I have pco's to. We had fun getting a diagnosis as I have always had problematic periods (i have very heavy periods every month), I had problems having smears done from my early 20's so my gp referred me to gynea back then where I was told I did not need a smear test until I'm 50! My gp was furious. Duo to severe acne I was referee to dermatology a few yrs later where I was given ultra sound scan showing definite pco's, he referee me to gynea who again done a scan and a blood test, scan showed definite pco's but bloods inconclusive, I then had laparoscopy where they stretched my cervix and cleaned tubes and later refered me to Ivf Wales in 2008. Ivf Wales done same blood tests which confirmed pco's and scan. I had my first round of Ivf which failed and discovered fibroids so I was refered back to gynea to have fibroid removed then discharged. In 2012 I had same discomfort as I had when I had first fibroid so my gp refered me back to gynea, this time gynea put me on metformin for pco's and confirmed 2 fibroids which were ok and he refered me back to Ivf Wales for round 2 which again failed and my fibroids have grown huge so yet again am waiting to see gynea again.

Good luck with your cycle and keep us posted.

[tazza_uk in reply to paeroking]

hi paeroking

Ive never had any problems with smears and I have them done yearly due to family history.

My bloods show 'classic' PCOS and my only ovary has a lot of cysts. I am also on metformin and find it has been helping quite a bit with some of the pcos issues. Last year I had emergency laparoscopic surgery to remove very large cysts which were extremely painful. I am still being monitored as some are already quite big but not causing any problems. I had my tubes checked with HSG in October, had an allergic reaction to the dye used and ended up back in hospital with the bad news that tubes are blocked.

fingers crossed for you that gynae are quick in helping you with your fibroids and good luck for any further treatment. Please let me know how you get on. x

[paeroking]

Hiya tazza you have had a tough time aswell then. Ivf Wales said each blood test I had with them does confirm pco's. I find my monthly periods very heavy and extremely painful and clotty. While having Ivf I had to stop metformin, as Ivf failed I have started taking metformin again all the horrible side affect should settle over the next week or two. Both my ovaries get loads of cysts which apart from infertility are not causing any problems at the moment, it is the fibroids that are giving me jip lol. I hope everything goes well for you tho

[tazza_uk in reply to paeroking]

Hi paeroking,

did you have problems with the metformin before? There is slow release version which seems to reduce the amount of side effects people get. Might be worth asking about if you are badly effected. Is there nothing they can do to help with painful and heavy periods? (Sorry that must seem like a strange question, I'm at the opposite end of the spectrum with no periods.)

I hope they do something to help you soon! Feel free to keep me updated.

[tazza_uk]

Had our first appointment and have our date to start our first NHS cycle for IVF. We are due to start down regulation on 24 June.

Quite excited and also nervous......

[Daenerys]

Hey ladies!

I, like you, suffer from PCOS, diagnosed in 2006, along with Amenorrhea. The same year we also found out that my DH also suffered from Azoospermia. I tried the Metformin route back then and couldn't get on with that at all! So we gave up for a few years to focus on our careers.

Then recently I decided that enough was enough and that, at 36, I needed to take better care of myself and get a handle of the PCOS, weight gain and everything else that goes along with it! I've lost 2 stone since January (long process!) and recently started on slow release Metformin, with some side effects, but nowhere near as bad as it was in 2006! I was also diagnosed with Hypothyroidism so also on Thyroxin. So many pills I'm rattling!

Had an AMH test 2 weeks ago and the results should be back this week which will determine what route we go down, and we're currently looking into clinics for treatment, both here and abroad. I know it's a long road but it's so encouraging to know that other people are going through the same thing and that there is hope.

Best of luck, will be thinking of you both!

[tazza_uk in reply to Daenerys]

Hi daenerys

Congrats on the weight loss.

Its good to hear that you have found the slow release metformin to be of help.

Hope all goes well with your results and whichever clinic you choose.

I agree, it helps to know there are others in the same boat.