private specialist - what he said/recommended

[kissmummy]

i thought it might be helpful for other people who are thinking of seeing a private specialist to tell you what my appointment with a private specialist was like today and how it compared with the NHS.
First of all, cost: £180. The specialist took a very detailed history of all my miscarriages, and talked us through in a lot of detail about possible causes. we had at least an hour with him. He looked through the tests i've had done on the NHS and recommended about 15 further blood tests that can be done. He has also recommended i have a hysteroscopy, which is a procedure under general anasthaetic where they put a camera inside the uterus and have a look to see if there is any anatomical reason why you are miscarrying (eg, if you have uterine scarring, adhesions, etc.) A hysteroscopy is just a day case (no overnight stay) but costs between £1600 and £2600 privately . I could get it on the NHS but there is a risk that it would be carried out by an inexperienced doctor who might miss things. On the other hand it could be carried out by a senior consultant who is a real expert - but there would be no guarantees of this so I would just have to take my chances.
If anyone wants to know exactly what blood tests were recommended please email me at [email protected].
Compared to the NHS, we had much longer with the consultant (the NHS appointment only lasted about 20 mins, max) and he went into much more detail.
however, he wasn't giving us false hope. when i asked how optimistic he was of finding a cause for my miscarriages (four in the last 18 months despite having a healthy 2 year old..) he was quite straight, and said it was very possible we would not find anything wrong. he emphasised how little medical expertise and understanding there is in this field i found that pretty depressing but appreciated the honesty.
hope that is helpful for others considering going down the private route. Oh yes, and all the tests will cost us about £2k i think but we wouldn't get them on the NHS so not much choice.

[just1moreplease]

kissmummy im really glad you have posted this

i am in a very similar position and am really debating about whether or not to go private.

i haven't had my 1st nhs appt yet so i think i will wait for that,

i will email for details for those test details though if you dont mind.

also where did you see the specialist? i have been lookin at going to spire but i dont know any one who has been there.

[kissmummy]

I saw Yau Thum at the Lister Fertility Hospital. Another expert we saw (Zita West at the Zita West Clinic in London) recommended him as he investigates both conventional stuff and immunology (NK cells) which the other best experts in recurrent miscarriage, Lesley Regan and Raj Rai, don't. (they don't buy into the immunology theories.)
it is a nightmare getting appointments with Raj Rai or Lesley Regan, but if you do decide you want to try and see either of them let me know and i will fill you in on what little i know about getting on to their patient list.

[annie51]

Hi

Just to say that I have also seena specialist privately, lovely man very understanding, he put me back on the NHS for all my tests so all I paid was for an initial consultation. He did my procedure himself and also put die through my overies. All my tests incl bloods came back normal. We have tried again twice since. First using baby asprin and this time on progesterone pesseries as well, mc both times.Got my doc to rerefer me back yesterday to see if any more tests can be done, but not hopeful.
Hope this helps someone.

[kissmummy]

hi annie - good that you got most of your tests on the NHS. can i ask if you have any children already? i'm sure you've written about it on another thread but i can't remember. i'm 35 and have one son who is 2.

[wouldlovetoknowwhy]

Hi kissmummy, glad that your first appt went smoothly and that you got some value added....I don't envy you the cost of the treatment but I do so hope that if they do find something, then they can fix it good.

Did you have your D&C in the end? I hope you're OK and fingers crossed that this treatment/tests is the start of a new chapter for you.

[kissmummy]

yes, i had my D+C on Tuesday...it went fine and assuming it's not done any damage to my poor old uterus then i'm glad i had it as it was pain free and at least means the miscarriage itself is pretty much over now.
i really hope next year brings all of us who are going through this some answers and/or better luck...

[wouldlovetoknowwhy]

well I'll keep you updated on whatever we decide to do (still not sure, in terms of ttc) but I hope to see good news from anybody who has had mcs soon...

[annie51]

Hi Kissmummy
I have 2 dd's am 39 and have had 6 mc's. First a mis then the dd's then 5 mc's.
Have tried asprin and progesterone pessaries the last time (MC on 9/10). Seen doc yesterday and got new rererral to gynae, hope it doesn't take too long. I've had 6 D & C's one due to retained products 3 months after dd2 was born.
Sometimes I feel I could write the book!!

[kissmummy]

annie i know what you mean - i genuinely am thinking of writing a book. i write for a living anyway. but i don't want to tell this story unless and until the journey has a happy ending - otherwise it will just be a book of total misery! eventually though whatever happens i would like to write something that really raises the profile of miscarriage and the suffering (so much of it silent ) that goes with it. thank goodness you have two children - six mcs is just unbearable...you've done amazingly to keep trying.and six D+Cs? i'm in awe and hope i never reach anywhere near that number. after my most recent MC i told my husband i did not want to go through it again unless we have some new hope, but already i'm mentally preparing myself for another try, even if the tests reveal nothing. the tales of women who have five, six, seven, eight or more miscarriages and then suddenly have a successful pregnancy are so tantalising....

[annie51]

Hi Kissmummy
The Doc yesterday said that his friends a doc and nurse had 4 mc all tests came back clear they then had a successful pregnancy. Maybe theirs hope?
My DH hates seeing what I go through every time and has swore never again. I'm normally so strong and he's not used to me in floods of tears it's about the only time it happens starting on the day of the D & C. All my mc's have been different from hearing the heartbeat to sorry but its not good news but we'll scan in x days to be sure. X days later good growth there's hope. 10 days later another scan no heartbeat. I got to 14 weeks one time and had everybody told had to untell but don't know if thats worse that telling family that I had a mc only to have to say that they got it wrong I hadn't then 10 days later well maybe I have, confusing and very up and down times.
Might try again after talking to consultant.
Hope's springs eternal and que sera.
Would you try again or wait on test reesults, how does your OH cope.

[kissmummy]

we're not trying again this side of christmas that's for sure. will go for blood tests in december, they take a few weeks to come back, so maybe get the results in Jan, and take it from there.... going to get acupuncture once a week in December and Jan. i hate it and don't know whether it makes any difference but will try anything that might help, and the acupuncturist's special field of interest is fertility and she is adamant it will give us a better chance. i don't see what we have to lose except money !
as a last resort, would consider surrogacy but that is such a desperate, extreme step, or adoption, but that is also a long and miserable process, according to people we know who've been through it. DH not convinced about adoption as he was adopted and did not have a good childhood. i actually think that would make him an even better adoptive parent but i think he's scared....
he's been brilliantly supportive over all the MCs...i'm really pleasantly surprised. wouldn't have been sure he would Get It but he does. i think it's brought us closer together - i hope it stays that way as i'm very aware this sort of thing can end up destroying marriages.

[sh77]

Thank you so much for posting your experience. I am a 1st timer as far as MC goes (missed MC at the mo) but experienced neo natal death of daughter 6 months ago. I had some clotting test results which came back abnormal but my consultant thinks there was a problem with the testing and so having them repeated again.

Not sure if it is worth having more blood tests at this point. How much did all your private blood tests cost? Bupa won't cover anything preg related at all. I called them yesteday to see if they would cover erpc but they said only if my MC was life threatening.

[annie51]

Kissmummy
My blood tests took ages to come back at least 10 weeks maybe because of being NHS.
I'm petrified of needles used to need held down for bloods am getting better at it loads of pratice. I've v bad viens and could end up like a pincushion with great big bruises which I focus on takes my mind off the real issue so acupuncture def out for me but hope it does you some good.
Think that my MP could be starting would be early for me but exactly 4 weeks after mc (I'm usually 6-7 weeks).
Would love to give it one last shot straight away but doc says to wait until gynae see me again.

sh77
I'm assuming your not covered by the nhs, would your doc not refer you as life threatening as a missed mc can cause complications.