Anyone been to the miscarriage clinic at Kings?

[Smiler]

......if so, it'd be good to have info on how long the waiting times are for the initial appointment and tests, what you thought of the service etc. - private message me if you don't want to discuss on the forum.

We may be being referred there for recurrent miscarriage and are unsure whether it would be best to wait for an appointment there or spend savings on a private service elsewhere.

Thanks.

[The Nappy Lady]

Hi Smiler.....have much experience....will post later when not 1 handed with baby.

Molly

[puffin]

I?m on waiting list to get an appointment at the recurrent miscarriage clinic at Kings ? I was sent letter end of last week advising me to call to arrange appointment but they do not have any until at least end of August and their ?target date? to see me is mid August (based on their targets for keeping waiting lists under 12 weeks) so I?m in limbo waiting to be seen. I?m considering going private. If you have medical cover, they will probably cover you to be seen privately, as long as you have not had any fertility treatment. I think the clinic at Kings may be fairly new as my doctor didn?t know anything about it and no-one seems to know who the consultant is there.

If I do get seen there, I?ll let you know how it goes. I wish you all the best as I share your stress and heartache with having to deal with recurrent miscarriages.

[The Nappy Lady]

Hi both,

First of all I want to say how sorry I am for the heartache I know you have been through up to this point. I am going to reply on the forum rather than via PM as I suspect there may be others out there also going through this stuff, and if I can help in any way by sharing my experiences I am glad to do so.

Between my first daughter, who I had very easily in 2004 (text book) and my 2nd daughter, who arrived in October last year my husband and I had 3 very hard years, when I suffered 3 miscarriages (around 6 weeks, 8 weeks and 12 weeks), and an ectopic pregnancy resulting in the lost of a fallopian tube between the 2nd and 3rd mc, so all in all it was a really horrible time, and quite honestly our lives felt like they were in limbo during that time.

After the first mc I always went to the Early Pregnancy Unit at Kings for scans from about 5 weeks pregnant, and then every 2 weeks or so to put my mind at rest and see how things were going, for this reason the ectopic was thank goodness caught in good time, which potentially saved my life. Anyway, after the 2nd mc I was told that if I had a 3rd one I would be referred to the recurrent miscarriage clinic for further investigations. Frustratingly the ectopic didn't count, but eventually after the 3rd mc I was referred and after what I think was about 9 weeks got seen (Jan 07 I think it was). It was tough waiting for that appointment, and I have to admit I pinned a lot of hopes on it, even though I knew that statistically only a very, very small percentage of early miscarriages can be medically accounted for (I think from memory about 20%). Anyway, when it came to it the clinic consisted of 1 appointment, when they took bloods and things and then I got results in the post a few weeks later. They didn't find any reason for my mc's and I found it incredibly upsetting because I really wanted there to be a reason, so we could say "that's the problem, and this is how to fix it".......

I thought that from the clinic there would then be more stuff on offer, group meetings, support groups maybe, or quite simply more stuff they could do, but that was it, nothing else, unless if I'd had another mc they would have then looked at the actual baby I lost to see if they could so any obvious problems.

In December 2007 (after a year of not even getting pregnant - I think my body basically went on strike) we went to Harley Street to see a private clinic to discuss IUI, we didn't want to go down the IVF route as there is such a high risk of mc with it, there seemed little point, but we know others who have had IUI sucessfully, and thought maybe it would be the 'magic fix' and is at least closer to being 'natural conception, and also a lot cheaper than IVF. Anyway, it was a horrible day, sitting in the waiting room you could almost cut the atmosphere with a knife, so many obviously unhappy people, and also when it came down to it we realised it was going to cost such a lot of money, and be such an emotional roller coaster, we honestly didn't know if we wanted to go down that route. Just the half hour talk with the Doctor cost us about ?300 (?50 just to register before we even got an appointment). I guess I was naive about the cost of private medicine. We decided to think about it over Christmas, and to be honest during that time I decided to stop trying and be thankful for the daughter we had.

And of course, like so many others the minute we stopped trying I fell pregnant...with a positive test in mid to late January, and finally it all went fine and my baby arrived in October - I had 2 weekly scans but we didn't really stop holding our breath until the 12 week scan, when the senior consultant told us it really was all fine...and even then it was another few weeks before I really believed I was going to have another baby. Of course there is nothing more annoying that to be told to just trying and you can't just switch off, you can only get there in your own time, but I do believe that stress (even when you think you're not) contributes a huge amount to all of this. I really think that I had come to terms with being a Mum of 1 (and I know how blessed I was to be that), but it was only when DD2 arrived that I truly felt complete, and I can't explain how or why that is, it's just how it was.

I hope this is of some help, if you want to PM me ever, about any of this stuff, or to ask more personal questions please do.

Of course it doesn't always work out for everyone, but I know a surprising amount of women who have gone through a very similar experience to me, and one friend who has 7 children, and has also had 7 miscarriages, so don't lose hope.

Best wishes.

Molly

[The Nappy Lady]

Sorry, I got distracted half way through, so forgot to say;

When I went to the recurrent mc clinic it was run out of the Early Pregnancy Unit, so same place I had been going for the scans previously, and actually the consultant I saw was one of the guys I'd had a scan from previously. I don't know if that is still where it is based though.

At the actual recurrent mc clinic the consultant spent some time 'managing expectations' (I think he was glad I already knew low % of those who can be diagnosed), then scanned me for any physical abnormalities, then took bloods to check for stuff like abnormal clotting levels, hormone levels etc. At some point I had to have bloods taken at different points in my cycle to check whether levels were correct at each point, but I can't recall if this was part of the tests they ran at then.

My hubby also had to have blood tests to see whether there was any issue regarding compatibility, and also I believe he had to have a sperm test.

Regarding going private. It is a tricky one. I'm not sure whether you will get any better / different treatment if you go down that route, but of course you may get seen faster. Private health stuff doesn't come cheap, and a lot of the costs are hidden, as it seems once you go down that route they start suggesting all sorts of extra stuff. What we found hard was that they don't seem to discuss the money, almost as if it isn't an issue for many of their patients, so you sort of go to see them with a figure in mind, which is for the basic treatment, but then they suggest other stuff, and it is only when you go into the office afterwards to see the admin staff that you get to find out how much it is all going to cost (at which point I ended up in tears, felt so embarrassed, but couldn't help myself). So, if you do investigate private stuff try to get them to give you an honest picture of costs first, and what tests they will offer - I appreciate you are only talking about tests rather than fertility help - but also be aware that in actual fact it is very unlikely they will find a reason for the mc's.

Personally I felt the medical care I got at Kings through it all was excellent, apart from the night I spent in there after the ectopic (awful, and waited 24 hours to see the surgeon to find out how surgery had gone, what they had done, whether the tube had been taken or not etc.), I had to go in for an ERPC after 1st mc, day surgery and much more efficient and better handled, and the recurrent mc clinic offered all it could I feel, it is simply that in reality, sadly, they are only at the tip of the iceberg regarding treating mc, and are still looking for a lot of answers.

You may know all this, but the facts are:

1 in 4 pregnant women will miscarry, but after a single miscarriage you have an 80% chance of your next pregnancy being successful, and even if you have 3 or more miscarriages your chance of having a successful pregnancy is still 6 in 10. This comes from the Miscarraige Association; www.miscarriageassociation.org.uk Helpline 01924 200799. I wonder if it may be worth speaking to them about private testing etc?

I have two amazing books about recurrent mc which helped me and I would be happy to pass them on to you if you would like them. I am in ED on Thursday and can pop them through your door if that would help, if you PM me your address.

Molly

[Smiler]

Thank you so much for sharing that Molly. It's great that you were able to have your second daughter after all the bad times.

I have got Lesley Regan's book, which is excellent, especially on the science side of things. I realise that there may not be an "answer", but am hoping that we might be able to rule a few things out before trying again. A couple of people have said that it is "masochistic" or "irresponsible" to keep trying after several miscarriages, which I have found upsetting.

Thanks also for the info on private treatment - escalating costs are what I'm scared of, I'm sure once you are offered tests etc. it is hard to say no, and it could quickly cost a fortune. Think it'll be the twelve weeks wait for Kings - thanks Puffin, hope you get your appointment soon.

I have found with Kings that the various maternity departments don't seem to know what the others do! The early pregnancy walk-in service is good though, lots of places don't have anything like this.

I'm going to Kings again soon, will ask about the miscarriage clinic and who is in charge of it and post info up on here.

Thank you very much again ladies, it's good to know am not alone.

[The Nappy Lady]

You are welcome Smiler,

I totally understand the need to try again, and as long as YOU feel emotionally and physically able to do so then don't let anyone dissuade you. But only you and your partner can (or should) make that decision.

After the ectopic I took 6 months 'off' got a personal trainer, got really fit and had a fantastic holiday, and after that felt much more ready to 'try' again, and I think it is worth noting that in the end it was after a 'natural' break of 12 months that my body finally allowed another successful pregnancy. I think the ups and downs of pregnancy, then loss take a huge toll, so do take some time out if you need to. Try to believe that it will happen when the time is right.

I absolutely support your decision to have the tests done, because sooner or later some of us must fall into the 20% or so who are diagnosed, and can be easily treated in order to be able to have a successful pregnancy. Take them up on any tests they can offer, no matter how small the changes of a good result.

The books I have, if you (or Puffin) wants to check them out to see if you want them are;

Motherhood after Miscarriage by Dr. Kathleen Diamond

A Silent Sorrow (Pregnancy Loss: Guidance and Support for you and your family) by Ingrid Kohn and Perry-Lynn Moffitt

Sorry for the typos in my messages earlier, I wanted to reply quickly, but should really have waited until I had more time and less distractions later in the day.

Good luck, I hope things work out for you in the end.

Molly

[puffin]

Thanks Molly - this is really helpful advice and information that you have provided. I'm hoping to hear from Kings soon re: appt at the the miscarriage clinic, but my doctor has already been very up-front with me that they may not be able to find anything specifically 'wrong' and it may just be down to bad luck. I have a medical plan with my work and rang them yesterday (Cigna) to see if they covered seeing a specialist dealing with miscarriage and they do, however I'm very sceptical as they did mention they wouldn't cover blood tests for genetic screening and I'm anxious that there may be other hidden costs which would also not be covered. It is horrible having to discuss your finances under such stressful circumstances.

I have also had good experiences at Kings - I feel like a regular at the Early Scanning clinic and also had ERPC last year that was handled well, although I agree that it is frustrating that there is little support for all the women who have to deal with miscarriage. I know I am stupidly impatient with the wait for an appointment at Kings, but my frustration is that when I spoke to St Mary's (where Lesley Regan runs the RMC) their waiting list is only 5 - 6 weeks. However it is difficult to get referred there if you do not live in their catchment area.

Smiler - if you go back to Kings, make sure they definitely speak to someone about getting you referred to the RMC then and there. I was told I would be referred when I went in for scan and was told I had miscarried again. I had to go back for re-scan and then found out that the chap doing the previous scan hadn't actually followed up with the clinic. Best of luck. I'll send you PM when I actually get seen to let you know what to expect.

[The Nappy Lady]

Thanks Puffin, glad you found the post useful.

When I went to the private clinic one of the options they discussed was this relatively new blood screening they do, where you and your partner's bloods have to be sent to the USA. I can't remember all the theory, but it is based roughly on a theory that over time your body is building up resistance to the pregnancies, due to incompatibility issues with your partner, so you will miscarry earlier and earlier with each pregnancy. If they then believe they find something you have to take meds to help get and remain pregnant. I think the tests alone were about ?2,000, then the meds on top....it gets scary.

I found it odd that they offered this to us given that my miscarriages did not get earlier and earlier, they were 6, then 8 then 12 weeks, so really didn't see how the theory related to my circumstances. It wasn't an option for us anyway as we just didn't feel we could afford it, but what scares me is that it is so easy to get sucked into huge expense because of the faintest glimmer of hope, even when some of the medical theory is unproven.

They also insisted my hubby did another sperm test, even though he'd already had one done on the NHS less than 3 months before. That cost another ?100 or so I think, and was frustrating given there were no issues. I guess they have to run their own checks, but you do feel a bit as if they cash in where they can.

It was of course easier for us to think through than some because we already had our daughter, and we were always very aware that we didn't want our time with her to be overshadowed by us being totally obsessed with the need to have another baby. I didn't want her to look back and wonder why Mummy and Daddy were always unhappy / stressed etc. and so when things were bad it was a massive help having her there to lift me back up and to give me a reason to carry on. I am very, very aware, and thankful of how lucky I was to already have her on so many levels, and my heart really does go out to anyone who is childless and going through recurrent miscarriage.

At least if your private health plan will cover the cost of you seeing a private clinic you could do that and discuss what tests they offer and what the costs would be. It can't hurt to be as informed as possible, and I think sometimes just feeling like you are 'doing something' helps.

Molly