New to this looking for some advice on where to start

[Weec]

Hi everyone

I have just been diagnosed with severe endo at the age of 40 and I am 5 weeks out of surgery having had one of my fallopian tubes removed. Without going into too much detail about the mess of my insides....I just wanted to know where to start to find out about how many eggs I actually have with a view to potentially freezing them. I asked my consultant and heard from her by letter but she has only suggested i speak with a fertility expert following our next appointment in six months time!!!!! I can't wait that long, i need to act now if i am going to do this. I am not in a relationship anymore but would like to consider freezing my eggs incase there is a possibility of having a family in the future. Any advice on the first step, thoughts on freezing etc would be much appreciated. I will start to go through the site looking for some answers but having done the same on the endo site I know how easy it is to get lost in threads worrying about stuff that hasn't even happened yet. I'm just after practical where to go what to expect, advice if anybody is able to offer that...

Thanks in advance

[Charlene1]

Hi Weec, I think the tests you want are AMH, fsh and the antri follicle count. The combination gives a picture of the ovarian reserve but I don't think it tells you anything about quality, unfortunately. I'm sure most private clinics offer these tests. It'll probably cost a few hundred pounds but will be much quicker than the NHS! Hope that helps and best of luck!

[Weec in reply to Charlene1]

Thanks Charlene.....I really appreciate you taking the time to reply x

[Sez73]

Yes, Charlene is right, AMH (Anti-mullerine hormone) will fall as you age, mine went from 15 when I was 39 now down to 6.6 at 43. FSH (Follicle Stimulating Hormone) will get higher as you age as more FSH is needed to try and stimulate your eggs as not so many of them left. Astral Follicle count will also show how many "resting" follicles you have and gives you and the consultant a better idea of how you may respond to ovarian stimulation. I had a scan of 9 at 43 and I got 6 mature eggs retrieved each cycle. Also a day 3 estradiol (oestrogen) level will tend to be higher when you have a low ovarian reserve too. (However, you can have higher oestrogen for a number of other reasons too) So all these things together will give a better picture, HOWEVER, they show nothing about quality and as we all know things are on a major decline post 40. I've always had levels which fertility consultants have said have been above average for my age, but that means nothing when 5 IVF cycles down and I've not had one egg grow past day 3 between the ages of 39-43, so you can have "better than average levels" but still not have the quality. Add into that mix a bout of endometriosis and that can have a big effect to. I was under diagnosed for over 15 years and when finally operated on was riddled with one of the most serious cases of endo my surgeon had seen, that alone can do untold damage to eggs unfortunately, something will can not be shown by any blood test. You may have to pay about £190 for a private consultation with a fertility consultant, however, I think it would be money well spent when time is not on your side. Best of luck Sx

[Weec in reply to Sez73]

Hi S

Thanks for your reply....great information and its really helped to hear your experience. I'm so overwhelmed, frustrated and bloody angry about it all if I'm honest and more than anything else just panicked. I suppose I am hoping that these test results will give me some hope to continue because at the moment everything looks so hopeless (especially without a partner to complete the process and support me through it! I'm so overwhelmed by it all I sometimes think I want a bad result from the test so I can just deal with that reality and get on with my life. I've always been a big believer in fate and knew I always wanted to have a family and really believed one day it would happen but now that whole life philosophy of what will be will be has been taken away with this diagnosis and i resent having to face these harsh realities. Sorry.....I'm descending into a rant here ha ha.....i suppose I will see what my results are like and then take it from there. You are right about the time issue....I will book somewhere private to get this done asap...thanks again and I wish you well for the future too. x

[emmab178]

I have severe endo and only one tube and ovary after that horrid disease stole the ones in the left from me.

To pipe in, amh cannot be done by your gp. Can only get it done privately or by fertility specialist.

After my tube and ovary were removed it took about six months for my hormones to calm down, not that it should stop you from investigating your options.

Do you know if you qualify for nhs funding or are you looking to go private? If private you can go ahead and make an appointment as soon as you are ready. On nhs it can take alot of time to get things going

[Weec in reply to emmab178]

Hi ....thanks for your reply. I have decided to go private as I can't wait any longer to find out. I'm not sure about funding as my consultant did not mention this. She only said she could put in a referral to the fertility team for me but this could take 3 months again. I know I will defiantly have to have surgery before IVF if that is the route I go down as they were unable to remove one cyst on my other ovary as it is so "densely adhered to my lower bowel"...they also did the dye test and they said whilst the dye flowed into my right tube it did not flow out???? She said that fertility experts would have to do further testing on this tube if i was considering the IVF route later down the line.....Its so confusing as before surgery my left tube was severely swollen and was causing me excruciating pain which was the reason they removed it and i assume it wasn't working.....so that would leave the other tube but the dye is not flowing out of that so how am I having regular periods??? ARRGH this stuff drives me crazy......i'll get the tests done and take it from there...I'm a terrible one on running too far ahead of myself worrying about stuff that hasn't happened....one step at a time eh? thanks again and sorry to hear about your experience too x

[emmab178 in reply to Weec]

If you go the ivf route then your tube is not needed so not sure why they said that.

It does take a long time for the nhs stuff to come through. At least if you go private you are a bit more in control. Good luck x

[Hidden]

I had the blood test yesterday for my amh count. You can have it on any day of the cycle and my fertility consultant sent me for it and it's costing £50. I assume this if cheaper than a private clinic. The blood goes to London and the results will be back in two weeks. If your consultant won't send you maybe your doctor would? X

[Weec in reply to Hidden]

Thank you....I hadn't considered that. I will look into the doctor route tomorrow. I've sent off a bunch of emails to clinics asking for quotes but they all seem to be about 350 for the ovarian reserve tests and scans and AMH counts. x

[emmab178 in reply to Weec]

Probably consultation then test is the price difference. My amh was £120. Just one thing to point out the clinic I went to said they'd had inconsistent results with the London amh lab so they redid it and sent it to the other lab in Scotland to double check. Not that it made much difference I got 7 from London and a 8.88 (very precise!) from Scotland.

[Weec]

Update - I'm booked in for an ovarian reserve test which consists of the ultrasound and blood test. Its costing 225 without a consultation or follow up to discuss the results which I'm not happy about but I couldn't afford the 650 the other clinic were quoting me to have the consultation before the test. I guess I'll just take my results to my doctor afterwards or look for answers on here.