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SIM (scratch in miscarriage)

(15 Posts)
NicolaC17 Tue 14-Feb-17 12:14:40

Hi All,

Not sure if anyone can help, having suffered an ectopic pregnancy and two miscarriages in the last year I am now being put forward for some blood tests and also taking part in a SIM (scratch in miscarriage) trail. There is increasing amount of evidence which suggests that miscarriage is related to a primary endometrial problem. Recent cochrane meta-analysis has proven that endometrial scratch improves live birth in women who underwent IVF.

The aim of the study is to find out if scratch of the endometrium prevents recurrent miscarriage.

Has anyone had this or had something similiar and If so what was the outcome?

I can't go through another miscarriage.

Thank you.

ThePopAndCry Thu 16-Feb-17 09:41:35

I had a scratch at Warwick University Hospital with Prof Quenby/Brosens after 3 early and 1 late miscarriage. The work they were doing was in it's initial stages then (nearly 2 years ago) but am really pleased to see in the news that this is now going to full trial. I know of lots of other women that have been to the Coventry team about recurrent miscarriage and most (if not all, now), including me, had successful subsequent pregnancies eventually. Whether this is down to the scratch or the other various treatment plans we were all on, I don't know. But then, that's why medical trials are so important! I have everything crossed for you.

NicolaC17 Thu 16-Feb-17 14:35:12

Hi ThePop&Cry,

I am actually under the care of professor Quenby at Coventry so this is great to hear you and others have had success. It's a difficult time when you can't see the light at the end of the tunnel, however, I am determined to stay positive and I really hope this scratch has a good outcome for me next time.

I'm really glad all turned out well for you - stories like this really do give you hope.

Thank you x

ThePopAndCry Fri 17-Feb-17 23:03:46

Aaaaah. She is fabulous! I'll never know what helped us finally have ds2, but her help and kind words will always stay with me, along with the fact that her treatment plan helped me get my consultant to agree to long term treatment when I was pregnant.

I really hope it goes well. They will look after you and listen. Staying positive is hard when you've been through so much, as you have, so well done.

JessieG1985 Wed 29-Mar-17 17:30:38

Hi Nicola,
Sorry to hear about your losses. I too have suffered two early miscarriages and an ectopic pregnancy all in the space of 6 months. I've just stumbled across the work of Prof. Quenby today, so still got lots if reading and research to do. But the success stories and the fact that her clinic is closer to me than having to travel to London as well as being cheaper than London clinics has me intrigued! Would you mind sharing any info about the SIM trial please, I'm especially keen as to how you got involved, did you get referred it was it self-referral? Thanks, same as you, I just can't comprehend going through this again sad xx

NicolaC17 Thu 30-Mar-17 10:16:07

Hi JessieG1985,

I was given their contact details from a private scan and told to have a chat with them. After having some initial blood tests that revealed no obvious causes for my miscarriages they said I was eligible for the trial (I am sure you can apply directly on their website) I had the appointment for this last month, although I am pretty sure I had the placebo and not the actual scratch and I am now trying for a pregnancy and once I am pregnant they will scan me at 6,8,10 & 12 weeks as long as it's within 3 months of the procedure. If I haven't fallen pregnant in that time they said I can call them and look at the next steps. They are a lovely bunch of ladies there and really have made me feel so much better about our situation and I feel positive for a happy outcome the next time around. Let me know how you get on if you decide to contact them? Xx

JessieG1985 Thu 30-Mar-17 12:55:25

Hi NicolaC17

Thanks so much for getting back to me with really helpful information. Even though you feel you had the placebo, at least you have the reassurance of early scans every two weeks to put your mind at rest. I'm keeping everything crossed that you fall pregnant in the next three months, yet if you don't, again there must be some comfort in knowing that they explore your next steps.
I'm in limbo at the moment, I don't think I'm quite at the stage to register for the trial. I'm only three weeks post-op from the ectopic surgery, haven't had a period yet and I think I'm going to be advised to wait a fair few months before ttc again. All my losses have literally happened back to back so I'm keen to let my body and mind heal and hopefully get some regularity back with my periods. I have been referred to my local recurrent miscarriage clinic, appointment is 10th May. I don't really know what to expect, did you have your initial blood tests to rule things out via your recurrent miscarriage clinic and then went onto be involved with the trial in Coventry? Or did Coventry rule things out themselves before accepting you on the trial? Do these initial tests cost on the NHS? I'm trying to get my head round it all, and it can become quite confusing when researching online. It seems there are level 1 and level 2 tests but I can't fathom if I'm entitled to these on the NHS and whether they are free or not. Did you have anything done to explore whether your remaining tube was healthy? Sorry for bombarding you with questions, you're the first person I've come across that has had the same experience as me and at a similar stage of moving forward with ttc. The more I read up about the team at Coventry, the more I feel like I need them in my life! They sound so sensitive and supportive, I want to see professionals that are positive and give me hope. Sending love to you xx

NicolaC17 Thu 30-Mar-17 21:16:10

That's ok. I struggled to find anyone who has been through similar and I am on the ectopic pregnancy forum and have only found 1 person who has been through an ectopic and miscarriages. My doctors wrote my initial referral for Coventry as after speaking to them they said I could go to them for free with a referral. They then tested me for
Vitamin D
Thyroid
Inherited sticky blood
Aquired sticky blood
Anemia
And something else (I can't remember)
All those came back as normal and then I was told I was eligible for the trial, however between the blood tests and my appointment with professor Quenby I found out I was pregnant but miscarried at 5 weeks. I was told to wait one cycle and then to track ovulation in my next cycle and once confirmed to call them as the trial has to take place between days 7&10 days after ovulation. They provided the digital ovulation sticks and I was lucky that my cycles returned to normal straight away.

Since that miscarriage I visited my doctors and have been referred to my local RMC for further testing. So far I've been for blood tests (has to be Day 2-4 of your cycle) and I am awaiting the results of those tests (I was told would take up to 12 weeks). All of this is NHS provided at the moment and have been done with referral letters from my doctors.

I had 4 months between my ectopic and falling pregnant and then 5 months between miscarriage and miscarriage so I don't think time makes a difference, if your body is ready it will happen. It seems it just holding on to it for us.

If you can I would call the research team at Coventry and have a chat to them, the ladies are lovely and when I first got in contact they were on the phone to me for about 20 minutes listening to my story and telling me what they can offer. They are happy to see anyone after two miscarriages with a doctors referral.

I have had scans and been told everything looks as it should down there and they can't find any issues but they are only external scans and I've been told I'll get a more detailed scan at my RMC appointment (whenever that may be).

Happy to help if you need anymore information and please keep me updated. I hope you are able to TTC again with some support from either Coventry or your local hospital. Xx

JessieG1985 Tue 04-Apr-17 16:20:21

Hi NicolaC17

How are you doing? I hope you're well. Apologies for the delayed reply, I've spent these past few days doing loads more research and reading plus phone calls to try and get some advice and guidance for a plan of action.
I'm also on the ectopic forum, I'm yet to post anything as of yet but it seems there's no posts that explain of the same situation as we have experienced. I'll have to keep trawling through and find the other person who has, I'm intrigued to hear her story!
I emailed Professor Quenby and she replied, giving me info on the scratch trial and the nk cell biopsy. She basically said I could do either or both. I wanted to know whether I should do them alongside any treatments/investigations that my local RMC may offer, but I didn't want to pester her anymore as I'm sure she's a very busy lady! I therefore took your advice and called the research team at Coventry for a bit more of an informal chat. I spoke to a lovely lady called Lyndsey who was so kind and helpful. She advised me to wait for my local appointment on May 10th then wait for their results and then decide whether I wanted to be investigated further with a biopsy/scratch through Professor Quenby. She said that that the wait times for appointments and results, although frustrating, will do me good by giving me longer to heal considering I'm just over three weeks post-op. As you are encouraged to conceive straight away after having the biopsy/scratch, it makes sense for me to ride things out and wait because I'm just not ready to at the moment. I'd be wasting my time and theirs if I were to have them done anytime soon. It will definitely be an option for me though if no issues are flagged up from my RMC.
Have you considered the nk cell biopsy? Did you have surgery for your ectopic or was it medically managed? Sending positive vibes your way! Jess x

Miloarmadillo1 Tue 04-Apr-17 16:23:04

I had my DD after 4MC, having had the scratch and treatment for high uNK cells (progesterone, heparin, prednisolone) at Coventry. I'm not sure which element worked, I conceived DD on my next cycle after the scratch. Good luck!

NicolaC17 Tue 04-Apr-17 17:32:14

Hi JessieG1985

I'm good thank you. Are you recovering ok? Lyndsey is the lady I spoke to and have seen at Tommys and she is lovely, they all are. I suppose it makes sense to wait until after you have had your RMC appointment as that might find something they will want to treat and I know being on the scratch trial they have said we should hopefully conceive within 3 months and if we don't to call them and they will look at next steps - that may be the NK cells then. I wasn't aware you could do them both together and I would have if I had been aware.

Have you had blood tests done already for you RMC appointment or will that happen on the 10th? I had mine done around 4 weeks ago and they said it will take around 12 weeks for mu results and the appointment to come through so should be similar time to yours.

I was treated with methotrexate for my ectopic. However whenever I ovulate from that side I always have a lot of pain and I wonder if there's an issue.

Miloarmadilo - that's great news! Really does give you hope hearing positive news! Xx

Nade2708 Sat 06-May-17 06:48:05

Hi, I saw this post online and thought I would join to see how you are all getting along with the trial. I had the scratch done yesterday at Warwick university hospital. I'm not sure if I had the placebo or the scratch but either was it did hurt. I haven't had any bleeding afterwards, did anyone else have bleeding? Can't wait to hear how you are all getting along x

JessieG1985 Sat 13-May-17 11:23:30

Hi Nade2708

How was your experience at Warwick? Did you see Professor Brosens or Quenby? Hope you're feeling ok after the scratch, or do you think you got the placebo? I'm not quite up to your stage just yet, just waiting for blood test results and I need to have a procedure to check my remaining tube after ectopic surgery. If both bloods and my right tube are ok, my consultant said she will refer me to Warwick. I think I just want to pay and be part of the uterine biopsy to check for nk cells treatment rather than be involved in the scratch trial. I don't think I could cope with overthinking if I had received the scratch or placebo. My understanding is that the uterine biopsy and scratch are essentially the same thing anyway.
Please keep me updated on your journey.

NicolaC17 - how are you getting along? Been thinking of you xx

Nade2708 Tue 16-May-17 06:07:03

Hi Nicola, I am seeing professor Quenby, she is amazing and gives you so much hope. I am just not sure if I have had it done or not, I keep thinking about it but I think I just need to put it to the back of my mind now and concentrate on getting my BFP. I had it done 2 weeks ago so ready to start trying again very soon so I will keep you posted. When do you get your blood results back? Can you get both done because I have read that some patients have had both. I didn't read this till after my procedure otherwise I would have asked about both. I hope your right tube is fine and you can look forward to the tests. After your results come back everything seems to go so quickly, I feel like that last few weeks have flown by.

Nadine xx

Nade2708 Tue 16-May-17 06:07:46

Sorry for late reply Nicola I didn't realise that anyone had responded xx

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