Fertility appointment.

[lillyflower]

Thought id let you all know what happened today. We had fertility appointment and the doctor was really good and explained everything but the bad news is the nhs now only fund up to 34 years old in Hampshire so we would have to self fund. He went over what they found in my lap and said was really good as they took lots of pictures he said although I have endometriosis, he believes my tubes and lessions are likely to be the cause of most of pain although there's no guarantee, if I was his sister or wife he would remove tubes asap. He then said this had to be by laparotomy, big cut, not by laparoscopy, like my last one. I asked why and he pointed out on pictures that there are a lot of lessions which has glued my ovary to the massive tubes which are extremely swollen and full of fluid. He said the only way to cut through this, seperate them then remove tubes is open surgery. Well that makes sense that my worst pain is always one side! I asked how likely it was he'd need to remove ovary, he said there was a chance but would be very unlucky to loose both and should be fine but worst case the one that's stuck but is very hopeful that it won't happen but can't promise, as long as I have one it wouldn't matter!!. He thinks because the endo is mild as far as he can see I may have some pain but is hopeful I would feel better after op. So yes everything the last gyni told me was all rubbish. So I asked how long, a couple of months time.... I asked for a little longer as Xmas would be better time to have off for me and he said they'd send appointment but I can ring and delay it so will see what happens. He also said he would do pre op on the Monday and op on Friday so no different doctors this time just him which I'm much happier about as actually seems to be talking sense! 

So back to fertility, he thinks after op and if all test are good he would think there was about a 40% chance of ivf working, and thought we should do all the tests to find out, so hubby got to do a sample and I have blood tests to do to check my egg reserve, if either of these aren't good then nothing else to do. If the tests are ok he can refer us for ivf but said it's not for everyone but can think about it later lets get results first. As I'm too old now which he said he did not agree with but unfortunately he has to stick to rules, it's the whole postcode lottery, if I lived elsewhere I could be entitled to 3!! So not fair, anyway there's loads of news articles on it if you Google it!! Well because they're doing initial tests on nhs, the ivf cost for us would be around £4000 depending on which clinic we chose, so as you can imagine I am devastated that there is no help for us but we have decided to do tests so we at least know and then see what happens If they come back bad it would at least be a definate answer and stop me thinking about it anymore but maybe they'll be good and who knows may win the lottery! 

So not only have I got to somehow take a lot of time off work and not be earning for a couple of months, although I'm hoping for a quicker recovery, forgot to ask that. I now know I'm unlikely to have any children, not ready to say won't yet! He said there is no way I could conceive naturally so ivf would be only option so we will decide after op and results what happens next.

The nurse has given me all her contact details so if I have any worries or questions to contact her, which was nice too.

looking forward to enjoying a painfree day soon! It's felt like I've had a knife in my left ovary for last 2 days although a little better today thankfully Xx 

I hope sharing this anyone hoping for ivf on nhs will find out the age limit and not find themselves in this situation.

[Lilyloulou]

Hi lilyflower thank you for sharing. We have our fertility appointment tomorrow and feeling nervous about the outcome.

[lillyflower]

Good luck !!they will ask about your general heath history, medication, weight etc and I've got forms to go back for blood tests on my 2nd day of period to test egg reserve and hubby needs to do sample and then we will know more, try not to worry my doctor was better than any gyni I've seen and explained everything so although it wasn't great news I came away knowing he was doing what was best for me and would try his best to improve my chances.

I've just spoke to my mum who has offered to pay for a chance at ivf if we dicide to continue after tests so I feel I've got that one chance I thought id be entitled to on nhs back and a little hope is better than none.

My cousin is having ivf in Norfolk and gets 3 goes on nhs so every area is different but at least hopefully they'll give you some answers tomorrow and I'm just telling myself one step at a time so not to get overwhelmed by it all, good luck and fingers crossed you get some good news x

[Lilyloulou]

Thank you lilyflower for your advise. Feeling nervous to find out what will happen but will keep positive. Best of luck with your test and best wishes with your journey. Glad you have the support from your family... mum both spititually and financially. I ll update you later to see if they say the same to me, thank you for sharing your story, kind regards. X

[Hollibob]

It is so unfair that there are such differences with what IVF is offered to people especially when there are obvious issues which are causing massive hurdles!!

Is there a direct website which tells you what funding/ages there are nowadays. I know the last time I googled it, they said they it was being run by NICE now?

[lillyflower in reply to Hollibob]

There are new groups for different areas that now make the decisions it's hard to find a definate answer to age I did a lot of googling and found north Hampshire said 35 which I was when I was refered but now were under southern and new guidelines are 34 but NICE set the guidelines which should be up to 42 now but due to budgets in each area that's why all areas are different it's very frustrating. Only way to get defanite answer is to speak to the fertility department I think. If you Google ivf in your area you may find an answer but must be up to date as it's all changed since April this year.

[squidgy]

Hi Lillyflower.

Wow that must have been an emotional day and one of mixed emotions. Great that the consultant is informative, understanding and has said what needs doing. But not that you are not entitled to NHS ivf and conceiving naturally is very low. Big hugs to you xxxx

I have been trying to get pregnant for the last 15 months and am now beginning the journey of being investigated. The GP hasn't refered us yet until the hormone blood test of mine comes back and my husbands sample results are back. Then he will. It is all scary and frustrating. I am now day 41 in my cycle, with no bleed but negative pregnancy test. My body aches, esp left lower abdo and back and the nausea is doing my head in too. I am also now trying hypnotherapy to help. Reiki I found didn't help with the endo symptoms at all.

Sorry I rambled on a bit about me there!

I hope that your tests come back fine re your eggs and partner sperm. Did the dr say whether you could go down the surrogacy route as an option? I hope you have lots of support from friends and family to help you both with this difficult time. I bet you are noticing that everyone else be it people you know, or in the media is all about pregnancy and babies! I hope the operation goes ok for you when the time comes for it. Thank you for posting your update on here. Sorry I haven't been much help with advice etc. Big hugs to you xxx

[lillyflower in reply to squidgy]

Oh forgot to say haven't discussed suragocy as the one bit of good news is when they did biopsy of womb during lap he said was all good and no problems so there is no reason ivf won't work. Also most areas don't fund suragucy so would be expensive with extra legal costs too. X

[Penelsk]

So sorry to see you all going through this. We went through fertility treatment, had 3 cycles of iui on the NHS (before I developed endometriosis) and our little boy starts school in september!

It's hard work but he was definately worth it. Fingers crossed for you all xx

[lillyflower]

Hi all thanks for your comments I'm feeling a little more hopeful today and penelsk that made me smile I'm so pleased you had success. Squishy fingers crossed for you and I hope you get refered soon and find out how they can help you. There are other things they can try before ivf if there is no obvious issues, but they should be able to explain what would be best so fingers crossed you have lots of options unless you are late and pregnant already. My friend who is now 40 has been trying over a year for her second child and had given up hope as she won't get funding either, but as she was sorting through all old baby things to sell over the last few weeks she then realised she was pregnant!! Amazing but she was worried about telling me! Part of me wanted to cry but I'm so happy for her and hope it gives you hope too. Unfortunately because my tubes are so bad doctor told me there is absalutely no way I can fall pregnant naturally and so ivf is my only option. Like I said the doctor and nurse were lovely and I really felt they wanted to help which somehow made it easier to accept. Knowing I can have one try if all tests are ok is giving me hope and so keeping my fingers crossed and I wish you all luck too xx

[squidgy in reply to lillyflower]

Thanks Lillyflower. Much appreciated. I will keep my fingers crossed for you.You are so strong and brave. Hope you are having as much of a pain free day as possible. x

[Bye-Jabba]

Hi all

Sorry to gatecrash... just wanted to mention something from my experience with grade 4 endo and ivf. I had acupuncture before and during treatment and the lady that did it suggested I had blood tests for blood clotting disorders (like antiphospholipid syndrome and lupus anticoagulant) as she had seen many ladies with endo who tested positive for these. I was positiv for lupus anticoagulant and was prescribed clexane during treatment and beyond - not saying that was what def made difference between first ivf failing and second one working as I'll never know but its another factor that might be worth considering x I know theres so much info to take in with endo and ivf so hope I havent added to that or caused any confusion. Just know its not sonethjng id been aware of first time around.

Wishing you every success, and happiness x

[lillyflower in reply to Bye-Jabba]

Hi and your welcome to gate crash! Lol . That's great news that's you've had success and any info is helpful thanks. I have had acupuncture and it did help just expensive to keep upand haven't been back since lap but was thinking maybe having more soon. I'll definately make a note of the blood tests and ask about it if we get to try ivf. I'm just looking into it all so after op I'll have something to aim for. Thanks for your comments and I love hearing from anyone who has had success with ivf it keeps me thinking positive so thanks x

[Lilyloulou]

Hi ladies Had the appointment and now feel completely deflated. We too have to pay for IVF. The gynae said be prepared for a long journey. Need to have the blood test and the dye X-ray thingy and husband to do his tests. Gynae also mentioned that we may not find out exactly the cause if the. Infertility and we may not conceive. Feeling lost and confused. X

[lillyflower]

Hi I'm so sorry you had bad news too I know exactly how you feel but do the tests and see if they find a reason then at least hopefully you'll know. I had the dye test same time as lap to check my tubes and so knew ivf was only option. If your tubes are ok you should have more options which won't be as expensive to self fund. My sister emailed me saying her friend had been given a very low chance but it did work in the end with the right help so after 8 years she finally had the right treatment and a baby boy! She did end up using donor eggs as that was part of the issue along with endo. So yes I spose there maybe a lot of tests and not getting funding is a big hurdle and a long road but hopefully a successful trip!. Another friend told me she had dye test and she thinks it cleared her tubes as following month she was pregnant! Sadly that wasn't the case for me but try and think positive! Is it cause of age you don't get funding? You never know this could change in the future I'm secretly hoping it does anyway. Sending a big hug it's a lot to get your head around but don't give up hope x

[Lilyloulou]

Hi. Feeling emotional about the infertility tonight. Caught the end of one born every minute on more 4 or something.... Why I watch it I don't know but now feel even worse about it all. Seems like the biggest mountain to climb ad I don't know where the top is or how far away it is or if I ll get there. Thanking you all for your support and know we will march on trough this. X

[lillyflower in reply to Lilyloulou]

Hi I know what you mean, I definitely feel there's a mountain to climb first! I avoid those programs as know I'll get upset, seeing my nephew who's only 8 months old is bad enough! I love the kids but seeing them is a big reminder of what I may never have so can get emotional! I'm having good and bad days trying to keep thinking positive as some hope is better than none so until I'm told it's impossible I'm trying to think positive! I'm also keeping busy with work so wasn't till the weekend I really sat and thought about it all and juggling how I'll have months off work is a big issue as I run my own business so that's my immediate concern but to have any hope of a child it has to be done and I'm praying it relieves some pain like he thinks it will. I must admit since my lap and knowing my tubes were blocked I've had a lot of tears and felt overwhelmed with it all so been on anti depressants which have helped and I do wonder if they are actually keeping me calmer than I thought I'd be if that makes sense! Anyway try to keep that hope and msg me any time if you need support as I know exactly how you feel xx

[Lilyloulou]

Hi. Thank you. You too feel free to message me any time. Would love to hear your news updates on your journey through endo and conception. Seems we are on the same road. Take care xx