Any Advice Appreciated

Faith · Post by **Faith** » Thu Aug 21, 2003 9:35 pm

Hello everyone, I'm new here, so please bear with me. I think this may be a long one...I've been reading the boards for a few weeks, but have only just plucked up the courage to post. Here goes... I'm 35, DH 32. Had a lap & dye in May, after years of heavy & painful periods. Discovered I have severe endo. My ovaries are enlarged and stuck together behind the womb. Apparently they're called 'kissing ovaries' which sounds quite nice, (unless they belong to you!) Tubes are distended (swollen?) and blocked with endo, they think. We've been advised that as fertlity is our main concern and because of my age not to get the endo treated, but to go straight to IVF. Our health authority will fund two cycles, but the waiting list is 3-4 years! Luckily we have some savings so can pay for a couple of cycles. We are currently looking for clinics. How on earth do you decide? Also, we live at least two hours from the nearest one! That's going to be a nightmare with work - we will always need full days off for appointments. We live in the North, so are looking at Manchester, Newcastle, Leeds etc. We've looked at Manchester Fertility Services (we have family around Manchester - could be useful if we need overnight stays). Is anyone with them? Are they good? There are so many things to consider, we just don't know where to start. Are there any clinics that specialise in cases with severe endo? I've had a 'normal' 21 day progesterone test and DH has been tested and seems OK, though we were a bit confused about some of his results! I am terrified of everything that IVF means (and most of all that it won't work) and was just hoping that someone could give us some advice as to what we do next. Many thanks for reading this, I really appreciate it. Good luck to everyone out there! Faith

SBROWN · Post by **SBROWN** » Thu Aug 21, 2003 9:40 pm

Sorry I cant give you any advice as I live in Southampton, the other end of the country but just wanted to say hi and welcome to this site, I like you read the threads for a while before plucking up the courage to post and I can tell you its the best thing I ever did. Everyone is so kind and helpful, there is always someone on hand to give advise. Its so good to get advise from people going through the same thing and even better its in English & not medical jargon. Im sure lots of girls will advise you re clinics & I think there are a few on this site with ENDO. Good luck with what you decide Sarah xx

caz1 · Post by **caz1** » Fri Aug 22, 2003 8:29 am

HI there - I live in london so not much help But look at the HFEA (Human Fertilisation and embryology authority I think) website and they will give you success rates for all the local clinics. thats how I chose. take care Cazx

fiona_lk · Post by **fiona_lk** » Fri Aug 22, 2003 8:31 am

Hi Faith I've had experiences of 2 private clinics in M/cr - MFS and CARE. I have done all but one of my cycles (the last) with MFS (7 x IUI, 2 ICSIs) and found their service to be OK whilst I was within normal ranges. However, I have a few main critisisms of them. The first is that they only treat people with FSH levels of lower than 8, which mine was until after I had an ectopic with treatment followed by a miscarriage. I found their attitude to my 'elevated' FSH levels somewhat impersonal - a bit upsetting as I had been with them for over 2 years. The 2nd issue is that they are pretty inflexible with their treatment regime - they always do a long protocol with Buserelin and Fostimon drugs where you down-regulate at day 21 for about a fortnight and then stimulate for approx another fortnight. This is great if you respond OK to the drugs, but I didn't, and also was hypersensitive to the down-regulating drugs (Buserelin). The consultant is very rarely about at MFS - especially if you have Dr Leiberman as he deals with St Mary's NHS as well. They have no policy (in fact are dead against) egg sharing. Once I went with CARE, I found they are more willing to try new things - I did a short protocol with different drugs and although still didn't respond very well, my dr had already decided what would be done different at my next cycle if this one didn't work (I'm very lucky to be able to say it has). This is not to everyones taste of course as it could be a bit of trial and error instead of tried and tested protocols. The CARE consultant is in at 7:30 every morning (well, mine was and there are only 2 there), and their attitude is more relaxed, they just have some better ideas on making the cycle go as stress-free as possible (I can give some examples if you like). Plus CARE have good egg sharing programs which is especially good if you feel treatment may be more than you can realistically afford (I think providing you are below 36 and have normal FSH) ANyway, this is my experience - they have similar success rates and have similar prices for treatment, but it is best to go where you feel comfortable (and have easy access - CARE turned out better for me in this respect too) They both have web sites to visit Good Luck Fiona xxx PS If you are not in Stockport, you may be able to get your GP to pay for your drugs for your cycle - the funding section of http://www.one-in-six.co.uk/main.htm web site have some useful (and pursuading) documents which may help. Unfortunately Stockport Health Authority put a complete ban on all IVF drugs after I'd had 2 cycles with my wonderful GP having agreed to pay!!!!

kathryn · Post by **kathryn** » Fri Aug 22, 2003 8:55 am

hi faith, Im not much help either living in essex, but you have come to the right place here! there is always someone to help answer a question here. However you will become addicted! well done for taking the plunge! take care kathryn x

Faith · Post by **Faith** » Fri Aug 22, 2003 9:46 pm

Hi All, Many thanks for your replies. It is good to know that there are people out there who understand what we're going through. When I got the results of the lap & dye, I knew the prognosis was not good. I was quite happy to tell people what had been discovered, but I think it was more that I thought that if I told people, it wouldn't turn out to be so bad...And in the meantime, who knew? I might get pg naturally...(some hope!) It was only really after my follow-up in July, that I think I realised how serious things were...And all of a sudden I didn't want to talk to anyone. Certainly no-one who'd ever been pg. They just could never, ever, possibly understand. That's why, even though I've only posted once, this site has been an absolute Godsend! Basically, it's now time I made some decisions...I've been putting it off and making excuses but I know that things aren't going to happen on their own. We have a few days off work next week and DH & I are going to take my parent's camper van (sounds dull, but we always have loads of fun) into the Lakes (we live close by) and just chill out and decide what we're going to do. Sarah & Caz - Thanks for the welcome. It means a lot to know people will say 'Hi' to someone they don't know! Kathryn - Too late! I'm already addicted to this site! It was so nice to hear from you. Like I said, I've been reading the boards and know that you've been through so much lately. I was really rooting for you and hope things go well in the future. Fiona - Thanks so much for your reply. I don't actually know anyone personally who's been through IVF, so to get such good info from someone who has experience of the clinics we're thinking of using is really helpful. Hope everyone has a nice relaxing Bank Holiday! Faith xx

Zed2003 · Post by **Zed2003** » Sat Aug 23, 2003 9:16 am

Hi Faith, Just wanted to say 'hi'. Like you I am relatively new to this site despite having gone through IVF 3 times. Can't help you much with the hospital point as I'm further North than you, but I hope you find somewhere you are happy with. I too have endo - although nowhere near as bad as yourself. I'm one of the 'lucky' ones in terms of mine is in small pockets that can't seem to spread very far. I was told that it should not be affecting fertility because of this (despite having severe symtoms like bleeding old and new blood for sometimes 2.5/3 weeks out of 4 and bad pain! I'm almost 33 and my FSH levels were 10, so I also decided that IVF was a priority rather than trying to sort out the endo. If it's any help, someone my friend knows had severe endo and had an ovary removed etc, and she has still managed to have a baby - the trick is to never give up hope - this site is proof of that. Anyway, good luck with everything. I often find this site a great source of comfort and the people are so genuine. It's also scary at times, but things always seem to get put into perspective! Hope the camper van trip goes well! Zoe x

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