Recurrent Miscarriage Testing, trials and tribulations...Part 7!

[squizita]

Hi all, carrying on from part 6. All kinicker-checkers, blood-testers, clinic-attenders and finger-crossers welcome. Nothing but love and crossed fingers...

OBD did you tell him and make him feel really bad? I would have done! Booo! Hope you feel better.

Just back from St Mary's, they were lovely but the news was not so nice; I have either a mis-shaped uterus or scar adhesions, so more surgery needed in 3 weeks to sort that lot out but it will require a month of HRT and a coil to stop the whole lot from sticking together. Joy! It should be possible to 'remodel' me, they say, and they told me they have corrected much more serious problems; they were even reluctant to name it 'ashermans' as it is not that bad and could partially be the 'top poke' of my heart shaped uterus (which they will chop off) IYSWIM. Then arm-fulls of blood (even the nurse said 'wow' and told me to go for a hot chocolate in Costa afterwards). So I think I will become a regular feature there what with pre and post op stuff, and more bloods in 6 weeks and then a full debrief and 'plan' before Christmas.

I am going to eat chocolate and lie on the sofa for the rest of the day. Grump! (I know it is actually good news that there may be a 'fix', but for now, grump!).

Got the clexane, but no sharps bin. Obviously I should have known they have to be prescribed and now I have to wait another 48 hours for one. Only have 10 days of clexane so will have to do the whole rigmarole again next week. I feel like I am spending my life walking down to the pharmacy - how on earth do elderly people on multiple meds cope??

My husband had to speak to him about something else and he had the cheek to say he didnt think I looked pregnant in a bad way but in a good way. WTF!!!!!!

Oh well - def on the choc later xx

Hello!!!! And I am back! not that I did not want to return, but the people at SMH kept me busy jijiji! no, seriously, I have been considering options, taking time, cooking and relaxing a bit before returning to the ferocious life of TTC and coping with m/c. 5 at the moment. So, to introduce myself, I had 5 m/c these past 2 years, i do conceive relatively fast (fingers crossed that it keeps this way) and then after the last one and waiting years for the NHS replies (we went early spring for blood tests et cetera and then we went to pick up results on the 4th of june only to be told that everything seemed alright and that it was then when they were officially referring us to the "specialist", the specialist was in September, 3 more months, and dr suggested us to try again...so we did and we had the last miscarriage in August.). So, I rang the SMH and booked for a private appointment. That same morning I posted my very first post in here asking for references and thanking Bakingtins and polka2 for directing me to your thread. SO, here I am following tribulations. TO those welcoming me or not, thaaaaank you for posting and for making this situation easier with all this posts.

I think someone else asked abt the appointment at SMH. It went relatively fast. In a blink of an eye we were already taken blood for blood test (ahahah! obviously) and I had a surgery scheduled, which I honestly thought it would take longer, but it was last week.

Like somebody else here, I believe it is justonemoretime I was diagnosed with a septate uterus whilst being examined during a hysteroscopy. When I woke up after the anaesthesia -and two lovely chicken sandwiches down,..i was so hungry!- the doctor came to the room and she very kindly explained me that I had a congenital abnormality that was corrected during the hysteroscopy and that she also took a biopsy sample. She did left 2 coils inside to re-shape the uterus, given hormones for a cycle, and then by the end of october she will remove the coils -I guess I will have a heavy bleeding after I stop the hormones and/or when she removes the coils. Then in Nov we have an appointment with her to discuss the findings. This is all. After the surgery I felt tired but well, the only thing was that I had bad constipation for 3 days,.. and until today or so that i don't feel 99% well. Of course I am bleeding... guess it is normal. Oh! in between I need to go for more blood test and a scan... i guess that by December we should we able to TTC again.

My DH is excited and relieved, but at I keep worried about whether or not something else will be found and/or if my eggs are good enough,.. I am getting paranoid about getting blighted ovum.. duno, after the septum has been removed they said it could be a major improvement to boost healthy pregnancy rates....

Anyways, long post I know but at least now that I have managed to almost read allll of your post and tribulations you are informed about me, ... so that -if you don't mind- I join you in the search of that sticky baby dust!

Congratulations to polka2 and to bakingtins!!!! really, for all I have read it is anout time! well, for all of us, so.. let's keep positive!

And many greetings to all of you. i promise to come back more often... oh! I have been doing some hypnosis to lose the fear I had abt getting pregnant,..and I think it is also one of the reasons why I am here, a bit more comfortable talking about it!

oh! justonemoretime, has your hysteroscopy been booked already? best of lucj with it, if you need more info about it since I have just had it done, please do not hesitate to ask.

Thanks for the update Mon it sounds like things are finally happening for you. I always feel better when there is a plan in place. Fingers crossed that everything else is normal and you get the green light to TTC again in December.

Hello and welcome Mon26, yes, it is booked for October 21st. I hope that, like you, it will be simple and help solve my problems. Best of luck with everything. :) x

justonemoretime I thought you might wanted to check it:
radiology.rsna.org/content/233/1/19/F3.large.jpg

The one I had removed last week was the small wall in the figure number 5(V) Partial Septate. I believe that is what I had. Although I also suspected that it could have been some scar tissue from my first and only D&C done abroad. However, Dr said last week that it was a septate uterus and that was corrected during the hysteroscopy. if you youtube "resection of the septum" it will give you a scientific approach. I found it fascinating, although a bit gutted that I fall in that 4% of women who have this abnormalities...I still think that it could be some septate that grew after my d&c, but obviously the doctor would have called it scar tissue,.. so, i will go by what the dr said.

Like yours, I should say , you know what I mean! xx

Thanks Mon, really helpful. Best of luck with your recovery; I will be sure to ask nearer the time if I have any questions or worries. x

hey bakingtins,... thank you. And, yes! it is a relief, and so my DH thinks, but i am all for the negative thoughts some evenings, and to tell ypy the truth to google too much to gather info is a bad thing to do. Too much info out there. i am stressed a bit about more things being found. can't wait -like all of us- to get it sorted and be in a delivery room and feeding my baby... :) At the same time I have a friend that she is recurrently failing her ivf, and getting deseperate as her last time will be this month, and i feel guilty because i do get pregnant! oh god! and on the other hand, i have like 3 friends that had had babies this month. i am happy for them, but cant wait to be there. And you bakingtins, how are you doing with the cleaxane?

Justonemoretime, thank you for your best wishes...if i could recommend something, the evening before the hysteroscopy eat something truly soft (soup...salad) ... and eat little after surgery -even if they have delicious chicken sandwiches!-, i found that my bowels were a bit upset after anaesthesia and they took their time to go back to normal. Also, if they prescribe you Diclofenac take it with food, i think i took it a couple of times without food and it added pain to my stomach/bowels.

:)

Thanks for the tip, Mon! :)

Justone sorry, I missed your earlier update. Sounds like you and OBD are in the same boat. I hope it's straightforward to get you sorted out. I think anything where there can be positive action, even if it's a bit of an ordeal to go through, has to be a good thing in the long run.

I had an email from Prof Q today and she wants me to wait until my scan to start the clexane. It's nothing to do with clotting disorders, which I don't have, it protects placental cells, so I guess she needs to know that placenta is attached in an appropriate place. might even have the sharps bin by then

OBD How bloody awful of your neighbour. Glad DH set him straight.

Just and Mon really glad they found out at St Mary's! Although it's pretty scary, it must be a relief to feel that they know and can do something very practical and definite to help you. Best of luck! (Also with diclofenac yes, always take it on a BIG meal ... used to have it for my joints- ironically now possibly down to blood stickiness- and ugh, the stomach pain).

Baking how frustrating with the sharps bin! Roll on the scan and the go ahead from Prof Q! :)

Hi, I'm back. Been really busy with work and a house move. And also just feeling like I had nothing to say. Feeling a bit downhearted about it all.

Congrats though to Polka and Baking. v good news both. I truly have everything crossed for you.

I have been diagnosed with over active killer cells by Shehatas clinic. This was done for free on the NHS by the way. So am now on steroids, and cyclogest if get a BFP. No mention of clexane so now am worried I should have that too. Have AF at the moment and feel v teary. The age gap is just yawning bigger and bigger. My DD keeps asking for a baby and her pretend games are all about having a little sister. Finding it tough.

Hope to jump back into this thread soon when I feel a bit better and have more headspace.

in the meantime good luck to all, and sorry fr not name checking.

donttry I also have my kids constantly going on about having a sibling, death by a thousand cuts! Our gap will be 4 yrs if this works out, and nearly 8 with my older one. Not really how my family looked in my mind's eye, but you can make it work with any sort of gap.
It's good you have a diagnosis (am quite you got to see Shehata on NHS, how did you manage that??). There's a thread on conception for TTC on pred which has a lot of his patients. I think you have to put your faith in someone and follow their protocol. It's v hard when they disagree with each other, but so much of this is new that the evidence for some of it just isn't there yet. There has been a lot of discussion on the thread about taking lots of supplements, people are taking stuff he disapproves of, others have found months down the line that treatment x interferes with treatment y etc - I think that way madness lies! DR Google carries a double edged sword - without it we'd all be sad, lonely, and swallowing the "unlucky" claptrap, but on the other hand it's v hard to evaluate all the information out there and sift the wheat from the chaff.

Morning ladies! I just had breakfast earlier on after taking my Premarin (scary prescription leaflet it comes with!). So proud of having a healthy breakfast: Yeo Valley 0% fat Yogurt with a delicious papaya. Then I thought I would check the nutritional facts for the papaya, and there I read that it "might inhibit estrogen!!!!" I just took my premarin! OMG. no more papayas for a while, I can believe it.. jijij I am still laughing at myself. Anyways, I guess that no a biggy for one papaya.

Thank you squizita, indeed they found the Partial Septate, (and I wonder how come other doctor's did not see it?). However, prof. R. said that she can't rule out any other causes yet ... so we need to wait for all the results before a plan/strategy can be decided. And you are absolutely right, oh! the Diclofenac! I will never never take it again without food.

Dear dontry having move to a new house, changes, et cetera it's stressful but don't let it to drag you down... on the contrary, just unpack the necessary boxes and go for a walk before or after work in order to relax your mind and thoughts. It is amazing what a little walk can do to our minds. I was on my way to supermarket quite fine last evening and on the doorstep I found a bill for some testing, from some third party lab for the SMH required test and it was a staggering 500 more pounds, I felt like so gutted that I thought it would ruin my day...then I decided I should not let it change my positive thinking. instead, after dinner and with hubby at home we put together all the "fertility bills" as we call them, and we found ways to deal with it. so, what I am saying is just come to terms with the fact that it is normal to be tired after all these journeys and a move, and indulge yourself with walks, knitting, lunch with colleagues or anything else. Allow yourself to live and enjoy, after all when AF is visiting we all need to make allowances!. Like Bakingtins mentioned, do not worry about the age gap, two of my nephews have an age gap of 4.5 years and they are wonderful!

oh! donttry, if you don't mind me asking how did Mr. Shehata tested for NK Cells? or how is that test done? or the average price? at my clinic, the SMH, did not test for it and I was thinking abt whether or not it is relevant....As positive as I try to be (ahahah! with all this selfhelp et cetera) it would be hard for me to have another mc once we TTC again in Nov/Dec.

Anyways... I will have to find a way to shorten my replies...!

have a great Wednesday and keep away from papayas

Mon I can help you with the NK stuff. Most of the hospitals are not testing for it, the official NHS line (which St Mary's subscribe to) seems to be they don't believe the theory that raised NK cells can cause miscarriage. Speak to donttry though as she managed to see Dr S on the NHS.
Prof Quenby and a group of colleagues recently published a paper saying that raised NK cells is a marker for steroid deficiency at a cellular level. Prof Q tests with a uterine biopsy at her implantation clinic in Coventry and this costs £350 for consultation, biopsy procedure, testing of the sample and results a month later (phone consultation) You need to be 7-10 days post ov and definitely not pregnant, and she runs a clinic twice a week. You are asked to consent to your tissue being used for her future research and to keep her informed of the outcome of any pregnancy on treatment.
The others who are testing for NK cells (Dr Shehata, Dr Gorgy in London) seem to be using blood tests. There is some controversy about whether NK levels in the blood reflects what is happening in the uterus.
Prof Q treats with steroids from BFP, plus may recommend progesterone from day 21 of the cycle (she looks at whether the lining is forming properly) and clexane. The others seem to recommend steroids whilst TTC plus a whole host of other treatments (intralipids, immune modulating drugs e.g. humira) There is a thread here for TTC or pregnant on steroids where I'm sure the ladies could answer your questions. I was recommended the book "Is your body baby-friendly" by Dr Beer who is an American pioneer of all this stuff. I didn't find it an easy read, tbh, it's horrendously complicated!
I really like Prof Q - she's very straightforward, no false sympathy, very up front about realistic chances of success. My personal feeling is that her protocol is as far as I'm prepared to go in terms of controversial treatments, money, time etc, but if those things are no object I think the London doctors will test more extensively and treat more aggressively.
HFEA advice on reproductive immunology

Also you may be interested in this article written by freelancegirl who posts on the pred thread and published in the Times a few weeks ago.

Hope that helps.

Hi everyone, im sorry but i feel the need for a rant and i know im probably being unreasonable. I have had bleeding for 12 weeks now sometimes so heavy its pouring down my legs and soaking through my clothes, ive asked and asked for adviceand just been told it will settle down, gp trying to be helpful but admits she is out of her depth and specialist is not returning her calls, ive had to delay starting back work as its just not possible with the bleeding and pain even though we really could use the money. My DD is trapped in the house with me most of the time as i feel so unwell, so this morning hospital calls me and i think great finally some help but no they were phoning to offer me counselling, asked advise about my symptoms told it will settle down and do i want to see a counsellor?? Is it so unreasonable to ask to be examined and or have a scan? Just seems this is never going to end

purple you are so not being unreasonable to be pissed off. How far away are you from the specialist centre in Dundee? Is asking to be referred there physically rather than just sending bloods a possibility? Failing that, I'd ask to be urgently referred to a gynaecologist more locally, at least they will have more experience than your GP.

Purple like Bakingsaid you are absolutely not being unreasonable not only is it a health risk (anaemia) but also mentally it must be killing you, it really doesn't sound right that you're bleeding so heavily still. I would kick up a stink if I were you and get at least a scan but ideally an appt with a specialist. Poor you, like its all not harrowing enough.

Baking good news you've heard from the horses mouth what, when and why you should be taking your clexane, hope the scan comes round quickly for you. I have had a similar problem with the sharps bin - I did remind them to put it on the initial prescription but its already full and I'm now getting drugs from Tesco pharmacy as its much closer (although needles are bigger so may re-think it) and they won't change/exchange/emply sharps bin as it was originally from Asda?!

Dont great news (if you know what I mean) that they've identified and can treat the killer cells - its all so confusing on this matter but I do think its pretty ground breaking stuff. Our hormones are a powerful thing - hugs.

Just and Mon great you have buddy's in the uterus shape correction gang, I hope they can get it sorted for you as quickly (and painlessly) as possible.

Hello to anyone else I've missed - its been a busy couple of days on the thread!

purple not unreasonable at all! I am a little shocked, tbh. My experience was diagnosis via histology, phoned in by local gynie hospital, called centre (Charing x) scanned, blood tests, weekly bloods set up and meeting with Prof Seckl the next day. You could try ringing Sheffield... They are on the web and help run Dundee. You should be scanned as a matter of safety/diagnosis.

Hi this thread was recommended to me. Can I join. I had my third missed miscarriage in june. I previously had two missed miscarriages then my dd then on our first go of trying we mm again. To say I'm gutted is an understatement. I'm at the stage of wanting to try again just got period today so feel like I could start trying in a couple of weeks but so terrified, putting yourself on the firing line again...medically I'm apparently OK after a couple of blood tests and a scan. The specialist we were referred to said if I were to fall pregnant again and a heart beat detected I would be put on aspirin, not sure how I feel about this! On another note has anyone else found sonographers to be rude and inconsiderate? When I had a scan to check there were no structural problems the woman said yes everything looks fine but don't be surprised if it happens again!! It is very common for woman to have multiple miscarriages 1 in 4!!! My husband and I just oh OK thank you, it is only now I think crikey whast great personal skills she had, bet she`d never miscarried!!! Anyway thanks for reading.

Hello can I join please?

Hi Pickle you are welcome to join, sorry that you find yourself here. This is a really supportive group and between us we could write a book on all aspects of mc, clinics, doctors and treatments. IKWYM about some sonographers, but please be assured that many of the specialists you will see are really understanding, I hope you have more sensitive care from here on in.