# Chronic pain condition and TTC



## Jepa

Hello all, 

Don't know quite where to put this post, but I'll give it a go here as I'm in the lead up to an IVF cycle (booked in for Feb 2012 at the Homerton) and we're trying our hardest to get pg before then.

Does anyone know about the effects of chronic pain on TTC? 

I ask because I have a connective tissue disorder, EDS type 3, and suffer from ongoing pain that fluctuates normally between moderate and severe, occasionally giving me a reprieve at mild or shooting up into the agonizing realms of extreme. I also have endo which adds to my pain load as well.  I am on a pain management program, see a pain psychologist and also take varius medication (none of the medication effects fertility but I will need to scale it back dramatically when I conceive). My infertility is unexplained.  

I also ask because stress is constantly talked about as a big contributor to infertility, and pain is a kind of stress, or at least duress, which your (my) body is under.  However it is never discussed in relation to conception and I wonder why, and whether this may be a factor for me.

Does anyone know of any studies that may have been done in this area, or have any information or ideas? 

Thanks fr your help!


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## Sheilaweb

Hi Jepalouie 
Welcome to FF hunnie, wish I could help with your questions, but I can post you in a couple of directions, and the ladies there may well be able to help.
Firstly there are loads of ladies with various unexplained fertility issues, there may well be someone there who has posted about EDS, or can help:
http://www.fertilityfriends.co.uk/forum/index.php?board=111.0

There's also a very active PCOS thread - so you may also find some useful information there too:
http://www.fertilityfriends.co.uk/forum/index.php?board=13.0

I hope that you get the answers to help you... but please shout up if I can help with anything.

The ladies here a very supportive and provide you with all the help you need,
best wishes
Sheila


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## Jepa

Hi sheilaweb,
Thanks for your reply all that while back!!  I had a bit of a break from ff (thou not from TTC) as I was preparing to get married in Australia and got sidetracked with that... It was lovely.
Now I'm about to start IVF, DR in one week (yaaaaaay!!!) and have been more active again.  I have joined a cycle buddies thread and also the Homerton hospital thread, but I would still really like to talk to people who are in a similar boat with me re other health problems/disabilities.  Chronic pain is really very prevalent in the community at large, so I would expect there to be a lot of other people who are battling it to some degree on this site (though it does tend to deter people from becoming parents as of course it makes things complicated).  While my condition (EDS) is relatively rare, I am sure there would be plenty of people on the site for whom chronic pain or chronic bad health is a big part of their fertility journey and I would find it really helpful to chat to some others, not only about TTC, but also about the impact this has on hopes and fears for parenting, and ways of managing all this (TTC, pregnancy, parenting plans, medication, etc).
I was planning to start a thread something like : Is anybody else out there with a chronic pain condition and TTC? but I am not sure where I would be best putting something like this.  Could you suggest a spot?
Thanks!


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## Sheilaweb

Jepa - I've been looking into EDS and I there aren't any threads dedicated to EDS - as you're trying to get pregnant, and you have health issues, please feel free to begin and Ehlers-Danlas Syndrome Thread here ... you never know, we may find someone who has the same condition.

I hope this helps.
Best wishes
Sheila


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## reso

Hi Jepa, congratulations on the marriage!  

I suffer from chronic pain and have been diagnosed with 'query' PCOS.  Not sure where the query comes in but I have been told it may be that.  

I have suffered from chronic pain for the past 8/9 years with a couple of op's and nerve blocks and so on.  I am now on long term medication which will have an effect on any pregnancy.  I have been to the pre-fertility clinic to get advice from them and we chatted through the meds and what it would mean. 

I am not sure to be honest whether there is a link given the stress and everything that my body has been under whether that is contributing but am happy to chat about it further or if you just want to chat in general about being in constant pain and what this means long term for children and things please do feel free to get in touch. 

Becca


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## Tulipwishes

I also suffer from Chronic pain, I have Sacroiliitis which is very painful and although I cant convince my OH to have any IF treatment at the moment anyway, this was something that did concern me, as the pain usually affects my hips and lower back and If I were lucky enough to get pregnant I'm not sure if the sacroiliitis would flare up as a result of added pressure or weight on the joint.

Good luck in your journey.


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## Jepa

Hi Reso and Tulipwishes!  
I'm sorry to hear that you're both suffering with pain  .  Still, on the flipside, it is really lovely to hear from people in a similar position so thanks for getting in touch  .  

Tulipwishes I'm so sorry to read your OH is not willing to consider treatment.   that must be extremely difficult for you.  I really hope that things improve for you.

Reso, I had a look at your blog and got a good sense of where you're at and what you're trying from that.  Good on you and congrats for starting the blog up! 

I have polycystic ovaries but not the syndrome, and my cycle is actually pretty much regular, if a little long (it always has been, though).  My infertility is 'unexplained', but has now been longstanding enough for us to be embarking on our first round of IVF tomorrow!!! (       ).  It feels very right to be doing it, exciting but also terrifying.

I've been doing acupuncture too.  I've been going for 7 months and think my lady is fantastic.  The first thing she got me to do was start temperature charting and I have been able to notice an improvement in my charts already, though obvs I'm not pg so it hasn't been a miracle cure for me.  It does seem like it is for some, though - I hope you'll be one of them  

I'm on long term meds that will adversely effect on any pregnancy too.  I had the pre-fertility discussion - as well as several when I was briefly pregnant, plus discussing pregnancy plans regularly with my treating specialists and GP.  I would be taking more medication than I am now if I wasn't trying to get pregnant, and for a loooong time I was inappropriately under-medicated while ttc because I knew that the meds weren't recommended in pg, but it was just too much to bear and I really wasn't functioning at all (spiralling further into decline), so I decided that I had to live for now and opened up my options a bit.

My plan is to start cutting them back once I get pregnant, but this has to happen slowly.  According to my specialists and obstetrician, exposure in the first trimester should be okay (should - argh!), and I will step it down gradually during this time to a 'safe balance' in the second trimester.  Even though the doctors are encouraging in terms of me taking the meds, it does freak me out - when I was pregnant before (which sadly ended in a miscarriage) I just didn't want to take anything that may do any harm, so I took basically nothing and it was agony.  It's such a complicated area isn't it, and fraught with so much emotion (and guilt and blame) and that impossible lack of hard research.  Fortunately I have some good doctors around me at the moment and feel (hope!!) I will be going into this much wanted pregnancy-to-be-one-day with close guidance.

Tulipwishes it does seem like your sacroilitis would flare up during pregnancy, although you never know how your body will respond until you are in that situation so you never know!  If I were you (if you can manage to convince you OH, that is) I would go into any pregnancy expecting problems, and with some kind of plan on how you expect to deal with them, and find out what support and treatment would be around to help, etc.  I get sacroiliac joint pain as part of my condition and it's rotton - I feel for you!  Mine did get worse while I was pregnant too, even though I only made it to 10 weeks, though how much of that was down to the lack of medication and how much due to the increase in 'stuff going on' in the area is hard to know (to me it felt like a mixture of both).  Certainly it would take a lot longer for any extra weight associated pain to kick in and I've heard about different kinds of pelvic and back braces that can be worn to help ease this, which again are really successful for some women, not so much for others...

Wow, a long post and plenty more to say.  Sorry girls but it seems I've been waiting for someone to chat about this stuff too!  Thanks for being a sounding board, and I am very very happy to be the same with any of your issues or stuff you might want to chat about too.  Reso, you mentioned the long term stuff and what it means with parenting and the impact on kids.  That's a really big one for me too.  I'm looking forward to conversing...

In the meantime, best of luck to both of you.


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## reso

Hi how are you, good luck with the IVF and I have everything crossed.  I actually completely forgot I had put my blog here   I need to get in the habit of updating it properly but things seem to be happening with the acupuncture route so will see what happens there while waiting to be seen on the NHS. 

I know what you mean with the medication, it's a case of take it and have some sort of life, (as in I can go to work but not much more, social life, what's that, lol), or don't take it and don't do anything.  It has taken a long time to get to where I am now where the pain is regulated to a much better degree but it is pretty hard core so I am loathe to play around too much.  Both the pre clinic and my GP said that although the meds weren't ideal I should be able to keep going with them but it would mean that any baby would be monitored and things like a birth would have to be strictly planned and monitored and that there may be issues with after, no breastfeeding etc.  I was told that it may help to be on total bed-rest for the last 3 months if I was ever to get that far which would mean that I would hopefully be able to reduce in time for the birth.  However at my first appointment at the fertility clinic the dr asked if I could come off them.  To be honest I am more inclined to follow my GP and pre-clinic people who deal with people like me a lot more often.  I did laugh a little, can I just come off them, of course, I'm just on them for the buzz! 

On the flip side I do think that many people look at me and think well how is she going to cope after, the truth is it would most likely be me who returns to work and H would take full paternity leave.  I also struggle myself on whether it is right to be on meds and try for a child but as long as it is safe and no harm to any child then it is something that I just have to try for.  If you would like to chat further here, or maybe off board, then please feel free to get in touch.  You're right, there is so much emotion, guilt etc as well as the not being able to get pregnant in the first place and always being the 'ill' partner but hopefully very soon that will all be in the past for you. 

Do let me know how you get on and I look forward to chatting more. 

Becca


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## Jepa

Hey Becca!

So sorry it's taken me so long to get back to you, especially after you posted such a lovely message.  Ive been sucked into the whole IVF roller coaster and have been meaning to write back to you.

I feel like I haven't because it is such a 'dense' subject, with so many things to consider and think about and worry about, especially in relation to carrying a child whilst on medication, and parenting with chronic pain.

I would love to talk to you about this further.  From what you describe our medication issues are not dissimilar.  
For me it is also a trade off between some level of functionality with the medication, though still being restricted in mobility and day to day activities and still suffering a lot of pain, or being in agony and able to do next to nothing without medication.  An easy decision to make when there's just me to consider, very complicated when there's a baby in the mix.

Like you I have full support from my care team to continue the meds through the pregnancy. But (again like you) some problems would be potentially expected, though nothing 'too' serious (apparently).  Thing is, I am finding any risk very difficult to accept.  Plus I just know if something more serious than expected were to go wrong, or something were to go wrong with the baby developmentally, the very first place I would look to blame would be the medication. However it's not as simple as being able just coming off it either - like you say it's not as though we're just on em 'for the buzz'!

Plus there's the whole fraught issue of parenting with a chronic health problem, especially one that already impacts on daily life even without any children.  I think your plan about you going back to work and your other half being stay-at-home sounds great.  DH and I have got a loose plan as well, which is that he will work 4 days a week, 2 of which can be from home.  We'll share the parenting while he is working from home, then when he has to be at work there will have to be someone there to help me with handling the baby - expensive but essential.  After the initial maternity leave period, I'll go back to work for 2 of the days he has off, plus whatever I can fit in working from home - probably another 2 half days.  It looks good on paper, and should keep us ticking over.  I still have concerns about how it will work in practice and how I will feel about not being able to do everything myself (I'm naturally a very hands on person, and it has been devastating living with enforced changes in that because of my pain), as well as wanting to make sure the baby has everything needed, emotionally and physically.  Basically I am worried my problems will impact on me being a good mother and that is a terrifying thought.  However, I do believe  that love is the most important thing, and that that I can give in abundance, and other than that we'll be able to handle the practical/physical side even if it is not in a conventional way. I wouldn't have got to this point if I wasn't convinced that DH and myself could provide a healthy, nurturing environment for a child, even if doubt creeps back in at my lowest moments. Fortunately I can say that doubt doesn't get much traction these days - all of these worries are real and they've not magically evaporated, but I do feel like I have worked through most of them and come to a good place by now.

My IVF treatment has been pretty full on - it is such an emotional roller coaster to embark on (though I do not regret it one second, whatever the outcome).  I had my embryo transfer yesterday and as far as I can tell it went really well!  I'm now PUPO (pregnant until proven otherwise) and I have to say it feels mighty fine.  They nearly didn't do the transfer because I got OHSS and ended up very sick for a while and had to be admitted to hospital for a couple of nights after egg collection.  I thought all was lost for this cycle at that point but amazingly my body has been a champion and even though ive a way to go till back to 'normal' I've improved many thousandfold - enough to be allowed to go ahead with the transfer. I'm feeling very lucky to have got to this stage!

I will know officially on 23 April whether it has worked or not, although I can't imagine I'll hold out from testing for that whole time!

I hope you are well and would love to hear from you.  I would love to hear how you are getting along with the acupuncture which was sounding very promising from your blog. I hope all else is also going well with your fertility trek!


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## reso

Hi Jepa how are things?  

Don't worry, I have found that since starting on this journey I do lose track of some things and yet can spend hours on the internet carrying out research!

It is exactly the same, its the trade off that kills me and at the same time how will this impact on any pregnancy?  I can't remember if I said, (another downside to the meds!), but they would try and lower my dose towards the third tri which I have been told would effectively mean bed rest for that time.  Let alone the finance issues I would go mad. 

It is the guilt isn't it, if anything were to go wrong then no matter what would be said I would still think 'but', it was my meds, I made that choice.  I do realise this is all very hypothetical at the moment but still, I don't have the luxury of considering this when something happens, it has to be a decision made beforehand. 

I think that's it as well, you have had the conversation and if there was no way you could do it I don't think you would.  That's part of why I think me going back to work would be better for us because it means I am not sitting there beating myself up wishing it could be me picking up baby, playing etc.  I will be the one busy at work and then when I come home have cuddles etc. Beginning to cry now because that seems like such a dream.  

The acupuncture is going well, since I have started there I have had 3 periods and given that in 2011 I had 4 I am looking to beat that record!  It is the only thing I can put it down to so I am hopeful that with that and then clomid we can kickstart something so that IUI/IVF will have more of a chance of being successful.  

I really hope that this time it worked for you, if you have time or feel up to it please let me know how things are going. 

Tulipwishes, is your OH against it for pain reasons or for something else, sorry if that is too personal.  If it is the former have you thought about maybe asking for a referral to the pre-pregnancy clinic?  We asked to go there to discuss the issues over my meds and to see where we stood and what the problems/concerns from their point of view would be and it really put my OH's mind at rest in that he knew what their concerns were and he had all of the information.  Well, some of it anyway, obviously the specifics would be individual but it did help to speak to them.  How are you doing with that decision? 

Becca


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## Mrs Rock

Ladies
I'm glad I spotted this thread as I have often felt alone with my chronic pain and its impact on infertility.  Only got time for a very quick post right now but just wanted to say that I count myself a success story and I hope it gives you some reassurance.  Regarding my chronic pain the best thing I ever did was get referred to the pain management unit at St Thomas's Hospital London, it is called INPUT and takes referrals from all over the country, you just need to ask your GP.  It helped me get control of my pain, my pain meds and get my life back and I now have a 10 week old baby and although I get very tired am really coping just fine!  The pain is still there if course and for me it will never go away.  But I have learned how to manage it better and in pregnancy was able to cut my meds right down to the very minimum.  I had to have a specialist scan and ante natal blood test at 15 weeks as my meds can increase the risk of neural tube defect but all turned out fine thank goodness.  I have been so lucky and I hope all of you are too, and that you get some hope form my experience xxxx


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## Sheilaweb

Argh fab news Mrs Rock - delighted for you on becoming a Mummy, and thank you soo much for your success story
Best wishes ladies
Sheila


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## cornwall

Hi all,

I know no one's posted here for a while but I someone's still reading it.
I suffer with chronic migraines and am hoping to have DE IVF. Obviously, some people think I'm totally mad to even consider this: how will I cope with a baby etc? But DH and I are sure we will manage with support from friends and family.

My main concern is medication during treatment and pregnancy. I currently take slow release morphine each day then diazepam, imigran, co-codamol when pain/migraines are worse. We've tried nerve blocks and infusions but not had any success. I've been told I may have developed chronic pain syndrome so would be interested to know how you are all coping.

Thanks for reading


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## reso

Hi Cornwall, 

I am on clomid at the moment so can't help you with the how to cope side of things although that is a discussion that we have had!

I also had nerve blocks which weren't successful and am also on morphine.  Have you had a chat with your pre-pregnancy clinic?  My GP referred me there so we could have a chat over the meds etc that I was on and it did help put my mind at rest.  They said that it's not ideal and they would try to reduce the dose once (if I ever get that far) in the 3rd tri which would essentially mean being on bed rest to try and reduce the dose.  

She said that many of the problems that babies have are when they don't know that the mother is on meds or drugs and therefore are not prepared to deal with any situations which arise.  If I got pregnant it would be a high risk pregnancy and I would be monitored much more closely than I otherwise would be.  There wouldn't be an option for home birth and I think that it would be fully managed in every sense and I am not sure about whether it would be a c-section rather than 'natural'. 

It was really good to speak to the people who deal with that on a daily basis and to know that just because I am on those meds it doesn't mean that things are going to be bad.  They said that because we are, apart from that, healthy then side effects will be lessened.  I wouldn't be able to breastfeed and there may be issues with the baby going through withdrawal but if the dose is reduced then that won't be as bad. 

So lots of ifs and buts that's if I can even fall pregnant!  

But I hope that helps a bit and I would suggest asking for a referral to the pre-pregnancy clinic as they do put your mind at rest. 

Becca


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## cornwall

Thanks Becca.

I've read similar stuff on other forums and the general consensus is that the pregnancy can be managed with careful treatment and a reduction in meds where possible. 

It has helped to put my mind at rest and, the fact that we are going for IVF means we will have much more control over the timing of conception.

I've been looking to see what adaptations are available for caring for babies and there does seem to be quite a lot out there. I feel sure we will manage and I know the In-laws won't need any encouragement to help out ................ whether I like it or not!


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## Daysleeper

Hi all,

I was nosying about and saw this post, I had to reply as I am currently preggers with a chronic pre-existing back condition. I, like others have mentioned have been placed at high risk due to the volume of medication - but the obstetrician, and anaethetist both keep saying that they would rather keep me mobile than have a baby without withdrawl. I'm high risk as I also wouldn't be doing anything like a home birth etc, probably a planned c section (if they can get an epidural or not - scoliosis prevents it just now) so I would say please don't give up hope or be too stressed about what you are doing to yourselves! Taking care of a baby with my back is going to be a nightmare (as is being pregnant with it so far!) but rather this nightmare than never having tried xxx


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## reso

Hi Daysleeper, how are things going? 

Can I ask have you altered your meds at all since the positive result?  I seem to have a positive result and clinic have put me at 5 weeks, will hopefully still be hanging on in there for the scan in 2 weeks.  But I don't know whether to try and cut down on my meds at all. 

I have discussed this with my GP who has said that what I am on is one of the 'safer' ones and that he has no problem with me being on it but that if I wanted to see if I could reduce the dose he would support me in that.  So now I don't know.  He spoke about the trade off and that if the pregnancy sticks then I need to be healthy and obviously I need to be on the meds on the dose I am on but still my heart says but what if something happens I will blame the meds!  Aagh, so difficult! 

So I thought I would come here and see if anyone had any advice on what you have done, or not done and how things are going for you? 

Thanks for reading. 

Becca


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## Jepa

Hi guys,

sorry I've been out of action of late - I've been 'recovering' emotionally from my IVF failure (I got a positive result oh so briefly and then lost it only days later, and was absolutely devastated) as well as physically from the treatment itself - I got OHSS and was hospitalised briefly by that which was scary.  The OHSS means you end up with masses of fluid accumulated on your abdomen which also irritates a nerve that runs through your diaphragm and gives you 'shoulder tip pain'.  With my condition I already have a local nerve compression on this nerve and so the second irritation flared my pain up massively for a long time after, not to mention recovering from the other effects of the OHSS.  And since recovering I've been working really hard and trying to manage my pain as best I can alongside that (bit of a contradiction, but heh!) 

But now I'm tapping back in again and so happy we've got some more people on this thread (though not happy that you also have to live with pain- I'm so sorry for that for you all) as well as some success stories!  Congratulations Mrs Rock and thank you for being an inspiration and showing it can be done.

And massive congratulations about your pregnancy Beca!!!  I'm so thrilled for you!  I really hope everything is going well with the pregnancy progressing and you finding the balance of medication, etc, that works for you.  Please let me know!

Hi Cornwall!  Your medication list looks very similar to mine.  I've been told by a lot of doctors (inc pain specialists and obstetricians) I would be supported to stay with the medication I'm currently on, while reducing medication if and where possible and that while there were potential risks to the baby, these could be managed.  I would want to reduce as much as I could bear, but there is a balance somewhere there and it is not great for anyone's health having the mother in excruciating, completely immobilising, un-function-able pain.  This level of pain stress could itself be potentially harmful to the baby.  When I was pregnant in 2010 - for only 10 weeks, sadly, I definitely erred on the side of stopping all the meds I could and trying to deal with the fallout, but it was very hard and I don't necessarily think it was the best way to approach it.  Since then, I've spoken to more and more people about it and come to what I feel is a more balanced view. 

Congratulations Daysleeper too!  And best of luck with it all.  What a wonderful nightmare you're headed towards!!

Now I'm coming up for another round of IVF, starting in November.  I'm very excited, though tempered with 'realism'.  I hope hope hope for a positive result and a smoother path to get there than last time, but we'll see.  Wish me luck!

xxx J


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## Sheilaweb

Jepa sending you hugs hugs, wishing you all the very very best for your next round hun.
Sheila


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## cornwall

Hi,

Congratulations to the BFPs!

I had one cycle of IVF in September but it resulted in a BFN. However, I had a chat with my GP and he felt that all my meds would be safe to take at least for the first trimester, except one drug which I only recently started. He thought I'd need to stop the MST morphine towards the end of the pregnancy as it affects a new born's breathing. Well, the BFN was disappointing but at least I know I can continue with my meds if I'm lucky enough to get a BFP.

I've been having trigger point injections recently and these have helped with my mobility and general pain. I have 2 more session to go then start my next IVF cycle in early December.

Best wishes to all.


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## ickle_hamster

I just just joined this site and stumbled across this thread and am glad to see there are other people in the same situation as me - well not glad!  Would rather we were all pain-free and pregnant - but at least there are people to support each other.

I'm 26 and have been trying for a baby for 15 months with no success.  Am currently waiting to attend my initial tests at St Mary's hospital in Manchester's reproductive clinic.  I suffer with both chronic back pain and endometriosis so have been told that if I want children I need to do it asap and tht I would need to be closely monitered throughout ny pregnancy.  I've been on pretty much every painkiller going at some point from morphine to diazepam to paracetamol and verything in between.  Am currently recovering from three sets of spinal injections a couple of days before christmas which has landed me on oramorph for the festive period.  Like you ladies I have the full support of both my pain specialist, gp and gynae for trying for a baby and will manage pain as appropriate when the time comes.  Generally I've tried to manage without opiates during the two week wait each month then used patches to take the edge off when my period comes.

I'v just got to the point now where I'm so disheartened because every month the endo pain gets worse - not getting pregnant is upsetting enough but following that with gony where I don't want to do anything other than curl up in a ball nd cry coz I'm in so much pai just makes it unbearable.  I am really worried that this pain/stress is what is affecting my fertility but don't really know what to do.

Good luck to you all - I'm so glad I've found this site, makes it better to know you're not alone xx


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## Jepa

Hello ickle_hamster!  Welcome to this thread, though very sorry to hear you are suffering with pain and having difficulty conceiving   .  It does help knowing there are people out there who understand what you're going through I think.

I understand what you mean about worrying about pain effecting fertility.  I believe it does have an impact, but I don't think there has been much in the way of research to prove it, although pain is a form of extreme stress (physical and often emotional too) and stress is known to be bad for fertility.  It's very difficult when you're trying to do everything you can to keep the pain down, but also need to balance meds for baby safety.  It is heartening that we have all been given the support of our consultants in this, though.

Hello again Cornwall, Resource, Sheilaweb, Daysleeper, mrs rock, Tulipwishes, and anyone else out there in the same situation. Happy New Year. I hope you're all doing well and that 2013 brings you fulfillment and happiness.

Now for my good news.... Drumroll... ... ... I'm pregnant!!!  I'm only 5 weeks so its very early days, and we're just taking it one day at a time, but finally I am pregnant.  My 2nd round of IVF after 5 years trying was in November/December and I got my positive blood test last week.  I am so happy and so nervous about is sticking around at the same time, but mainly focussing on the being happy bit.  The best Christmas/New Year present imaginable.

I'm currently still on quite a bit of medication (i cut down a bit fir IVF but didnt want to stress my body too much in the process either). Everything im on is ok for this stage of the process, but once I've had my early scan ill be meeting with my pain team and obstetrician to work out a medication and management plan and put it into place.  It would be wonderful if some of you we're around to talk this through with and confide in when things get tricky and more painful. Fingers crossed I make it that far (and all the way!)

Cornwall, so sorry to hear your treatment wasn't successful this time around   .  Someone posted something nice about how the 1st round should be seen as a 'practice' run, which I fund helpful in looking at my bad 1st round down the track. Its really good to hear the trigger point injections have been helpful for you. Will they be ok for you to continue in pregnancy when you do get your BFP?

Best thoughts and wishes to everyone.  Happy new year again!!


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## cornwall

Jepa: Congratulations! What great news. I know it's early days but you've got past the first hurdle.

Thanks for your kind comments. I agree about the first attempt being a practice run. I've just started preparations for my next attempt and should be heading out to Cyprus in a couple of weeks. I haven't discussed whether trigger point injections will be safe during pregnancy. I'm going to wait until I have good reason to ask that question.

Good luck and happy new year to everyone


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## reso

Hi.

Firstly Jepa, CONGRATULATIONS! Am so pleased for you. 

Oh Cornwall I'm sorry to read about your first round but wishing you all the best and sending lots of vibes for the next. I hope Christmas and New Year were ok for you, I know parents/siblings can be so insensitive and suck even more around this time. 

Hi ickle_hamster, sorry that you have found yourself here but it's a great place of support so good luck for future treatment. 

AFM: I'm now 27 weeks (how did that happen, seriously!) and have been really well cared for all along.  I moved just before 20 weeks so am now under another consultant in a different health board but to be honest I like the new consultant better, he seems a lot more switched on so am a lot happier now. 

I don't know if it will help to know what I have done but I didn't make any changes in the first trimester.  My GP said that it wasn't advisable and as my meds are proven not to impact on development and growth then it wouldn't make a huge amount of difference and that in that period I needed to be able to cope.  After the 20 week scan where everything was clear I started to reduce.  I have done it really slowly, coming down by 5mg in the morning dose, doing that for a week/week and a half getting used to that level and then adjusting the evening dose by the same amount.  So it's taken a while to come down even by small amounts but I'm happy with how it's going. 

It is getting to the stage where I am having to consider whether I can continue to reduce as the levels of pain are becoming unmanageable, yesterday for example I maybe shouldn't have been driving and I need to for my job so...

Jepa, I am not allowed to breastfeed because of the meds, I can't remember if you are the same, but it can get a bit overwhelming all the pro breastfeeding literature you get.  I know I struggled with some of the advertising so I will give you a heads up, then again it might not bother you, I'm blaming hormones, lol. 

I won't go into too much details at the moment about birth plans etc, mainly because I still can't believe that after 4 years this is going to end in a real baby, but also I don't want to be insensitive to others on this board.  If people would find it useful for me to update just so they know what to expect or would rather PM me please do. 

All the best for 2013 and fingers crossed that this is the year for us all x


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## ickle_hamster

Congratulations Reso!  It's really positive to know that other people in the same position are suceeding   I've got to go for my initial scan and blood tests on Monday and my OH has to arrange for bloods and sperm test next week too so finally feel like things are starting to move after a frustrating Christmas on high doses of oramorph and diazepam after previously managing to reduce my meds to lower stuff for four weeks of the month - grrr!!  Annoyingly it was after injections into my spine which was supposed to improve the situation - and now I'm stuck on oramorph rather than my patches for my endometriosis pain coz it's too late to switch between.  Ah well - at least I'm making progress.  Has just been a very bizarre situation where I sat willing my period to arrive so I could arrange this scan, when I've spent god knows how long praying it wouldn't!  And lo and behold the one month I knew with 100% certainty I couldn't be pregnant (injections done under xray so had to not be) I was 3 days late!  Beginning to think I'm slowly losing my mind with pain and frustration coz I can't concentrate on anything which isn't very helpful when I'm supposed to be studying for a masters!

Is it just me that feels like everyone must be sick of them constantly whinging?? I'm doing my best to cope and stay positive but it's so hard sometimes......


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## Worry All The Time

Hello everyone,

Hope you don't mind me joining - thanks for the pointer to this thread - as if I didn't have enough with immune issues throw chronic pain into the mix too!  LOL (I figure I have to laugh otherwise I would be in constant tears!    )

(Some of this is just a cut and paste from an earlier posting so apologies but I will give further details re pain and meds etc and impact etc)

After 8 cycles and 2 soul destroying MC, things are looking much more positive this time so hopefully this is 3rd pregnancy lucky!

Our own journey has been challenging to say the least, some of it just being dumb luck and some of it you just couldn't make up if you tried but we haven't given up! 

We have had one viability scan at 6+5 and it was a little mixed; Looks like we lost one of our embryos within the previous week but we saw one perfectly strong HB with everything measuring 6+6 so while very relieved a little saddened too.  

Next scan is scheduled for 1 weeks time (8+3) to see what the second sac is up to and check in on everything so yet another waiting game.

Medication-wise I am on pretty much everything: Cyclogest aka bum bullets, Prontogest/Gestone, Clexane, Aspirin, Prednisolone, Folic acid 5mg and Thyroxine.  I am also on the standard Pregnacare.  At this stage its hard to tell what I feel and if its 'normal' or due to the meds but I have sore (.)(.), feeling sick but no hurling yet, headaches, not sleeping, shattered tired, deathly pale and most definitely NOT blooming. 

Due to immune issues and chronic pain (and heavy duty pain meds) I have been told I will need additional monitoring so the plan is scans etc at least every 4 weeks.

I am a born worrier and natural cynic – a scary mix in this assisted conception world ;O)  DH says it's all good practice for having a baby though personally I figure there must be an easier way!  

Pain meds wise:
I am on Morphine patches (50 micrograms changed every 48 hours), paracetamol to boost the morphine and I have the usual back up of Sevradol, Oramorph & Diazapam to take as needed if I am having an extra special 'episode'  - I figure I must be worth a fortune on the black market   I used to take Sevradol as part of my regular regime but intentionally tried to avoid it for the past 2 cycles.

Pain and impact on fertility/early pregnancy:
For our first cycle: I had discussed my pain meds with my consultant and thought everything was agreed but I was told be to come OFF ALL PAIN MEDS pretty much cold turkey just before we started.  Keep in mind we had already discussed meds with Pain Consultant, GP and Pharmacy and came up with an agreed protocol and plan for reducing close to term(if we ever got there).  
I got pregnant but sadly MC'd around 6 weeks.  
Just before I went in for my second cycle (FET), I happened to get a phone call from my pain management consultant (just as we were getting out of the car to go for transfer!) and I explained what was happening and what had happened WRT MC.  He was absolutely livid, he said and it was proven fact that unmanaged chronic pain could lead to MC etc and if my FS needed an update on current thinking point him in his direction!  To say we were distraught, upset and angry all in one was an understatement.  We regained composure and when we met with our fertility consultant, I replayed the conversation with my pain consultant.  
The immediate reaction from said Fertility consultant was 'Is your pain consultant and Endocrinologist I AM!!!'  and then to deny ever telling me to stop my pain meds!!!! At which stage DH automatically put his arm in front of me to prevent me launching myself at the little $h!T£    

I can still remember the look and feel of total and utter incredulity on our faces and how we felt so... let down...  I guess. 
Like I was going to make a mistake regarding morphine i.e. the meds that were allowing me function day-to-day and maintain some semblance of normality... it was insane. 

The outcome of that meeting was 'go back on your pain meds as agreed with pain consultant', we had our FET but BFN (personally I just put that failure down to one of those things as pain was managed again before if would have impacted negatively etc).

Since then, I have moved consultants locally and clinics (a couple of times  ) but have had ongoing support WRT pain management.  Our (second!) local fertility consultant has been amazingly supportive and has said he is very happy to coordinate my obstetrics care from an NHS(I think but not sure on that one actually LOL as we are private patients) perspective as he looks after high-risk/difficult pregnancy with his NHS hat on and is more than aware of my complicated history and lengths we have gone to get where we are (he is the unfortunate guy treating me when we had 11 embryos destroyed by ecoli in petridishes! but has gone above and beyond to help us have treatment elsewhere with him acting as personal satelite doing all the scanning and monitoring etc). 

I honestly don't know what is next but my assumption is pain meds stay as they are for the first two trimesters at least but I could be in la la land being very naive... Its only now I am thinking of what it really means and how will it impact work etc etc...  
Factor that with my full immune protocol and the risks associated with that and thyroid issues..

Any guidance and advice greatly appreciated 

Looking forward to getting to know you all

WATT x


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## reso

Hi Worry all the Time, so sorry to hear of your journey so far but also glad that there is one on board. 

Just a quick reply at the moment to say that I was advised not to do anything meds wise in the first trimester, keep everything as it is because of the risks.  Once things are more established then look to reduce slowly with support and guidance. 

As a result I started reducing meds in the middle of the second trimester.  I reduce the morning dose by 5mg and keep the evening dose the same then keep that for a week, the second week remains the same so I can monitor levels/movement etc and just make sure things are ok.  If things are ok I reduce the second dose by 5 and repeat. 

So far things are going well, apart from the pain clearly getting worse but I went through everything with my specialists and know that even if I can't come off totally then the birth will be ok, not ideal but ok. 

Any questions about care or reducing etc please ask, I can't say I will be able to answer but always happy to try.


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## Daysleeper

Hello!

Lots of peeps here now, sorry we are all in lots of pain! 

After doing all the same worrying about reducing, by the end of my pregnancy I was taking more pain meds ever due to the mobility stuff. Dont underestimate just what being pregnant will do to your existing conditions! 

Erica was born shortly after Christmas and went through an up and down withdrawal process - if anyone wants more info on this then feel free to message me. Needless to say we made no friends on the postnatal wards with a screaming devil baby to take care of   She is now gaining weight and doing much better though. 

In my case, staying on meds was the right decision, infact with the wonder of hindsight I may as well have doped myself up more. I was trying so hard to cut down, but she withdrew anyway. You may aswell make yourself as comfortable as possible xx


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## reso

Daysleeper, will message you if that's ok?  

I am really struggling at the moment with whether to actually keep reducing and cause issues for myself or just accept that there will be issues at birth.  If you wouldn't mind me asking a few questions that would be great as trying to find people who have actually been through it is rather difficult!


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## Mrs Rock

Hi everyone, just popping in again to wish you all the best.  

Daysleeper, huge congrats on the birth of Erica   

When I was pregnant with DD my main worries were about development, as I was on pregablin which is thought to increase the risk of neural tube defects.  We had a specialist nuchal scan and blood test called the integrated test at the London Ultrasound Centre which gives a risk factor for neural tube defect, as far as I know it's the only non invasive test which does this and the only place you can get it.  It was expensive but worth it.  Just thought I would mention it in case anyone is in the dame position.  I was also on amitriptyline which can lead to withdrawal at birth but I managed to get off it in the last trimester.


Good luck everyone and wish you all as pain free as possible


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## Daysleeper

Hi Mrs Rock, thanks for the congrats - part of Ericas withdrawal was from amitriptyline, I stayed on the same does throughout pregnancy, I wish I had tried harder to reduce that one, I spent all my time worrying about opiates instead!

Reso, go for it, I probably can't be much specific help but I certainly know what its like no-one havingva clue what you are going through - bet everyone thought I was a heroin addict on the ward...


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## Crazychickenlady

Hey so I suffer from scoliosis, osteoarthritis in the spine and osteophyte's. I'm 25! I'm currently seein a physio but I've found it's making this worse, (my arms go numb and tingle (its painfull!) sometimes) and I take tramadol for the pain. As the weather gets warmer, my back feels better. After advice from a doctor, he said if I am trying for a baby, I need to stop the hard cor drugs and go back to taking paracetamol 4 times a day, everyday! I'm just after some advice really on what pain relief others take, that are safe, but work for moderate to severe pain? Also, if anyone else has scoliosis I'd like to here how you cope with the condition?


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## ickle_hamster

I suffer from chronic back pain and endometriodis.  When I first started trying the pain clinic switched me to just paracetamol and codeine phosphate but over time they've also added in diclofenac, tranexamic acid and Buprenomorphine patches which I used during my period.  The pain is still awful and unmanageable at times but am trying to function on least possible drugs.  I've also been in hospital for nerve blocks, steroids etc injected so ended up on oramorph for a few weeks after which was lovely in a way coz the pain reduced so much, but was also horrible coz it made me so ill   I don't know if that helps at all but my advice is to talk to your GP, it's all very well saying painkillers are bad but you still need to be able to function.  Good luck xxx


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## Worry All The Time

Hi,  

(I have chronic back and joint pain - kicked off by an RTA in 1998 but morphed into something much bigger)

I think I may have posted the details of my medication earlier but I am currently on matrifen 50 patches and paracetamol as maintenance and for particularly bad 'episodes' I have sevradol, oramorph and diazapam (2mg) to take prn.  I usually have regular Rhyzotiomy and cooled RF to effectively burn the nerve endings in the base of my spine but as this needs to be done in theatre and under x-ray it has been on hold for the past couple of years as I was either having TX, pregnant, preparing to go again etc.  Obviously nerves regenerate causing even greater pain and I could do with having the procedure again (due to have it about 18 months ago...) but that won't be happening until after the baby is born (probably the week after if I have my way   )

Before we started ttc, I had conversations with my pain consultant, GP & pharmacy and we agreed the plan above was the safest for the baby - I was assured morphine wouldn't negatively impact fetal development and either would diazapam (used as a muscle relaxant in low doses).  However, it would mean there was a danger of impaired breathing(for the baby) at birth (but only in the same way as it can suppress an adults breathing and O2 levels too) but this could be managed as could any withdrawal symptoms if we hadn't managed to wean me off it in time.  As a result I am considered a High-Risk pregnancy and have Consultant Led care and I assume there will be a pediatric team at the birth too... 

I have managed to stay away from sevradol, oramorph and diazapam as much as I can all throughout TX etc and stayed off it totally for the past year  but still use patches continuously.  

I initially came off ALL pain meds at the instruction of my first fertility specialist  - I got  pregnant and had my first MC.  When I told my pain consultant about being forced off all pain meds and the subsequent MC etc. he was very angry as he he said there was much documented proof that unmanaged chronic pain could lead to MC...  When I presented this theory to my Fertility consultant he actually denied telling me to stop my pain meds in the first place!    Needless to say we moved consultants and my pain management regime was reinstated.

I am now in my 2nd Trimester and my understanding is I will need to wean off morphine in the 3rd Trimester and I will be discussing this in a couple of weeks when I meet with my consultant(OB) as we need to formulate a plan (and I like to manage my expectations  )....

I am not looking forward to coming off meds as I don't take morphine for the fun of it - it allows me to function and I am pretty sure I won't enjoy the heightened pain levels and the impact they may have on me.  In saying all that - I feel really good so far and my pain hasn't increased yet so who knows...  
I am also comfortable with the fact that by the 3rd Trimester the baby will be able to survive me being in serious pain and while my life may be miserable, the misery will be for a finite period of time and junior shouldn't be impacted.  

I had to fight to ensure the people involved in my TX and current pregnancy were 'educated' in my pain issues (never mind the underlying issues causing the pain) but I am very lucky to be cared for by an OB Consultant willing to listen and learn  

This a really difficult decision to make and I was more than prepared to give up pain meds if it meant a healthy baby no matter how that impacted my quality of life but the reality is that may not be the best choice to make.  We were heartbroken after the first MC especially as it may have been avoided.  

My advice would be to talk to your GP or pain consultant (if you have one) and explain your dilemma - you need to function if at all possible and while you are prepared to compromise on that, you are aware this approach may be a danger to a developing baby especially in the early stages.

I will let you know what the plan of attack for weaning me off my patches is and what I can expect etc - hopefully know more March 14th!

Good luck!

WATT x


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## reso

WATT, 

I am now 35 weeks and have been slowly reducing my meds since the second tri.  I am in discussions now with two different consultants about induction / my care.  I have come off totally and can hardly walk and am house bound.  Am starting maternity leave on Friday but it's the not sleeping etc as well that you have to consider. 

One consultant is talking about putting my meds back up so I can cope but my thinking is that if I am this close, it's going to take weeks to get me back up to a dose that helps so why not just consider early intervention.  

I am consultant let which now means weekly visits to the consultant, thank goodness my partner has flexible work.  

It's hard though because I'm the same as you, for a few weeks of discomfort for me the baby will hopefully be ok and being so close now it seems daft to undo all of that.


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## Crazychickenlady

Thanks for the background info ladies. I'm finding the mornings the worst actually. Once I'm up and about things ease off. I'm definitely going to see my normal GP as I think going cold turkey can be quite harmful! There must be stronger painkillers out there than paracetamol, it doesn't touch the sides!!


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## cornwall

Hi,

I take a cocktail of meds including morphine and diazepam. My GP said I could continue with most of my meds during the first trimester and probably during the second. He said it would be best to try to stop the opiates in the third trimester due to possible breathing difficulties for the baby when it is born. 

I'm not pregnant yet (2 unsuccessful IVFs). Going for a third try soon and hope it works. My GP is very supportive. I haven't discussed it with my pain specialist yet as I thought I'd wait until I was actually pregnant. Hopefully, he will also support me as I'll be needing my trigger point injections and nerve blocks after 3 months with no morphine!  

Good luck and best wishes to all, whatever stage you are at


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## Worry All The Time

Hi,

How is everyone? x

Apologies for not replying Reso - for some reason I haven't been getting any alerts to posts so I didn't bother checking threads!
How are things? How did the last few week go? x

Cornwall, I too expected to come off morphine etc from about 6 months due to possible breathing and dependency issues for the baby from the meds in their system at birth but I saw my OB Consultant for the first time over 3 weeks ago (he knew all about the complicated history and still agreed to look after us!) and one of my questions was about weaning off and when etc... 
I am no clearer as to a plan as he said he may not go down that route as there was perhaps a greater risk if I was off my pain meds and unable to function and was immobile.  I was really surprised by his attitude but it makes sense - he said it was very different weaning someone off meds if they could continue and function to a level(albeit in some discomfort) but if there was a great need for the pain management he would prefer I was up and about rather than risk blood clots and other complications etc. He also said it is very different dealing with a baby with dependency and/or breathing issues if they were aware in advance and prepared at the birth and had the relevant experts on standby as it was the unexpected difficulties that were the most challenging.

CrazyChickenLady, I hope you managed to get some help to improve your pain and things aren't so difficult.

It looks like the Consultant and DH know I will be having a c-section - just waiting for me to come to the realisation too and then accept it!  I said I wasn't in the slightest bit concerned about having a 'wonderful' birthing experience as our priority will always be for baby and Mom to both make it in one piece.  I told the consultant I didn't mind which, only the outcome mattered and that I was under no illusion of a CS being the easy way out as I have had many major abdominal surgeries and am too aware of the recovery process!  Interesting enough he said he would also have a GI(Bowel) surgeon in theatre too due to existing intestinal complications - something I hadn't even considered... 
At this stage there won't be any room for me with Paediatric team for the baby, OB team and GI surgeon etc for me!  
Honestly, I thought it was difficult getting this far - I hadn't even considered what would happen at the other end of the pregnancy!  

My pain levels had got much worse as the pregnancy progresses and I have contacted my pain team but it seems they want the OB team to look after me for the duration of the pregnancy and am a little disappointed by that as the reality is (regardless of how enlightened my consultant is I don't know what his supporting team are like - physio etc) only a pain team truly understand the challenges and implications of being in constant pain, day in day out, year in year out.  
That being said I now have a magic back and bump support and it has really helped with a particularly challenging flare up a couple of weeks ago but I was terrified this was the beginning of the end and I was on a steady decline pain-wise but looks like it was just a blip and am back to the usual pain    Should get referral to the OB physio next week so will see what transpires... 

Everything fine at last scan @ 17 weeks and our 20W (20w+4d) scan is on Tuesday - beginning to get edgy as usual as it get closer to a scan.

Hope everyone is doing OK and pain is manageable.

WATT x


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## VWilko

Evening Ladies

Mind if I join you? Any of your thoughts/opinions would be most grateful 

Firstly many congrats to those of you who have managed to conceive & all the best to those who are still trying 

Sorry if I waffle...
4yrs ago I suffered an emotional & stressful time, I returned to work too early resulting in going sick again. I suffered with fatigue, then insomnia & muscle pain but no inflammation.  Several tests later nothing, 1 thyroid test was slightly elevated so given 25mg of thyroxine which made me poorly so told to stop.  Went to Rheumatologist who sent me for more tests including MRI scans of my spine, again all clear, letter to GP "treat symptomatically for chronic pain disorder" (fibromyalgia). He was a bit of a @@@@ & I was pretty peeved to just be sent a letter writing me off!

I've been back n forth to my docs who have prescribed overtime Co-Cocodamol, Amitriptyline and Paracetamol.  I'm now on Paracetamol & Dihydrocodeine 30mg x2 upto 4x a day.  Bizarrely you'd think I'd be a space cadet but don't really affect me . I ask for a repeat & my GP gives me one, no questions!!!!  Some days are better than others, depending on weather too, when its lovely & warm I don't struggle so much however recently I get up from my chair or bed like a 90yr old 

4yrs on and 2 ICSI BFN both top grade blasts transferred? 

I'm probably going off the subject now but wondered how many of you ladies with pain issues have had immune testing? I had level 1s done (Nov 2012) prior to tx 2 although I'm concerned to consultant didn't read them as I had to chase them repeatedly & finally got a call the day I started DR to say oh yeah they're fine!

Now we have a frostie this time but I'm thinking should I go for level 2s or get my level 1s repeated?  Out of interest my Nan has Rheumatoid Arthritis, Mum has Hashimotos & Sister Underactive Thyroid!!! Too much of a coincidence?  I'm wondering if steroids would help....

I've just acquired Dr Beers book & it's the first time I've seen Fibromyalgia mentioned!! Whoopy

Thanks for reading & sorry for going on.  Vanessa x


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## reso

Hi,

Worry all the time, I gave birth 9 days ago so thought I would let you know what happened with me in the end, there were lots of conflicting information under two health boards but we got there in the end!

I started to reduce my meds properly from about 15 weeks, reduced the morning dose by 5mg's then stayed like that for a week or two then adjusted the night dose.  This meant that I was clear by 35 weeks.  It wasn't easy at all, I won't even pretend that it was but I had an understanding boss and worked a lot from home and then started mat leave at 36 weeks so was bed bound for most of that time. 

Towards the end the consultant had no issues with the baby but it was my wellbeing that they were concerned about so talked about inducing me at 37 weeks then, because my consultant ended up being off no one else was happy to make a decision on 'his' case without him so I ended up seeing him again at 38 weeks when he set up a sweep for 39+1.  He also stated that I should have an epidural as I wouldn't be able to cope with two lots of pain and the stress on my body so if we eliminated one of the pains it would be a lot easier and I would also be able to cope better.  It sounds like that is what your consultant is thinking with the c-section? My consultant was the same as yours, actually more concerned about my health than that of the baby.  He said as long as they knew what to expect then they are prepared, it's when they don't know that issues arise.  As it was, by the time I had come off, although he said I would be better going back on and up, I knew myself that to get to a dose that would work would take a while so why not just stay off and go on bed rest.  Towards the end I was being monitored with an extra scan and weekly appointments with consultants and consultant paediatricians but the care was good. 

In the end I went into labour naturally, and only managed to get to hospital 40 minutes before our son decided to appear, so there is an upside to being in chronic pain so I never got the epidural. 

For us there was no issue with his breathing or withdrawal because I had managed to come off a few weeks before hand.  We were advised that were I still on medication I would be in at least 96 hours as that's how long it can take for withdrawal signs to appear.  I had expected a 6 hour discharge so glad I was prepared to stay in longer had it been needed.  My consultant also sent us to the head of the sick kids unit to talk about what to expect should there be issues which I found incredibly helpful we knew exactly what would be happening from the lady who would be looking after the baby, it might be worth asking for something similar. 

The other thing is make sure that they read your notes and that your partner is ready to jump in to advise them of your injury/pain.  A couple of times the midwife went to haul me up by the shoulder so mt H had to stop them and move me himself or tell them how to move me.  

Also, as the pain gets worse expect the tears and frustration to get worse too.  I spent a lot of the time in tears asking H to help me/push for induction/ just get it out.  It becomes so, so hard to just function but it is all so, so worth it in the end. 

Good luck for your scan.

VWilko, I'm sorry I can't offer any advice for you, but there is no harm in pushing for testing even just to rule things out and so that you have answers.  I am sure someone more knowledgeable will be along soon.  Good luck though in whatever you decide.


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## cornwall

Hi Reso,

Just wanted to say congratulations on the birth of your son  . I'm so pleased it all worked out for you.
I'm still waiting to start my next IVF cycle but would like to know how you are coping with your little one. 
Do you have any special equipment, or are you just learning how to adapt as you go along?


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## Jepa

Hi there!

I know it's been quite some time but I'm hoping some of you at least are still keeping an eye out for this thread...

Reso, massive congratulations on the birth of your son! And Daysleeper too on the birth of Erica!  Well done lovelies, I'm so happy for you!  I'd love to hear how you're finding motherhood?  I hope its going really well and you're both managing to keep your pain in some kind of balance along with plenty of happiness!!  It has also been really helpful reading about how your pregnancies/labour went and how you've both managed so far, so thank you!

Worry all the time I really hope this pregnancy goes well for you all the way up till the end and that you manage to navigate your meds successfully.  I absolutely cannot believe (except of course I can only too well!) your fertility consultant telling you to go cold turkey on your meds!  How mind blowingly irresponsible and misguided...  I'm so glad you put him thoroughly straight and that you've got some solid support and good advice on board for your pregnancy.  I'd like to hear how you're going/have gone in the last months/weeks of your pregnancy and I hope it hasn't been too diabolical pain wise.  I'm hoping I'll be in your situation in the not too distant future and can learn from your experience.

Mrs Rock I was really sorry to notice in your signature that you've just had an unsuccessful FET    .  That really sucks honey, and I know you've had a real ride recently. VWilko I also read similar in your signature - that you've recently had a negative cycle.  I'm so sorry. Wishing you both all the best as you heal and hoping for better luck for you soon  

Cornwall, when is your next cycle?  Maybe we'll be at similar times?  I'm so sorry that your second round wasn't successful either, but I really hope that 3 is the magic number!  It's such a hard, bumpy, painful ride isn't it!?  

AFM, the last post I made on here was a joyous 'I'm pregnant' shout out.  Sadly not long after (at 8 and 1/2 weeks) my pregnancy was discovered not to be viable - no heartbeat on scan.  So I had a medically managed miscarriage.  Crushingly disappointing and sad, as i'm sure you all understand.  I was complete zombie for a while, then my work deadlines caught up with me and I threw myself into them with reckless abandon, drowning out some of the emotional pain with work obsession, but irresponsibly making my physical pain a whole lot worse in the process.  I'm still suffering the effects of the flare-up, and of course the 'emotional debt' had to be paid back too.  After my big work deadline passed (which I'm happy to say at least I met!), my DH and I finally went on our belated honeymoon and spent 10 days in paradise in Thailand.  Sweet bliss!  Unfortunately though, when we got home everything completely fell apart for me - pain levels through the roof and so exhausted I turned into a complete zombie, and consequently felt utterly depressed and like nothing was possible anymore and the grief of the recent miscarriage reared it's head loud and large.  I had no choice but to rest up and wait it out and gradually have started to come back to life.  

In the last few weeks I've finally hit something like 'my normal' again  (meaning a life restricted and compromised by pain and the associated fatigue, but at least a life again) and I'm trying to build on it now, taking one step at a time.  Excitingly I'm also nearly finished DR for FET with a baseline scan on Friday to see if I'm ready to go to the next meds and head towards the transfer!  So I'm cycling again!  With everything crossed for a better outcome this time and trying to get that elusive balance between hope and realistic expectation right to get through the treatment.  I'm finding FET feels like less of a big deal than a fresh cycle, partly because I don't need to worry about OHSS which I'm high risk for (and got badly my first IVF) and I guess there's just less stages to go through.  I know my heart will be in my throat when it comes to thaw my embie out, though, and the 2ww will of course be purgatory!

Crazy Chicken Lady and Ickle Hamster how are you going with your treatment?  I hope things are looking up for you both.  CCL you're right, there are definitely stronger things than paracetamol that it's appropriate to take in pregnancy for pain if you need to.  It sounds like you need to find a consultant who will properly understand your situation and help you in balancing the needs of your baby with your body's needs - you have to take care of the mother to take care of the baby anyway - rather than just some puritanical idea about a strict paracetamol only regime no matter what the circumstances.  Have you been seen by a pain team?  
In answer to your question about scoliosis, I have a scoliosis in my back which contributes to my pain but is not the sole cause - I have a body-wide connective tissue problem which means that my joints don't hold stable and I get lots of problems, mainly in my neck, lower back, shoulders, arms, wrists, hands as well as hips, knees and ankles at times.  I get the numb painful arms you describe - I've had nights where both arms are paralised to the point where my DH has to gently begin to move them for me.  For me this is caused by compressions in the nerves becasue of my unstable joints, unfortunately aggravated by any activity I do, but it makes sense that this could be caused by scoliosis too.  Ive definitely had the experience of having physios make things much worse (I got rid of those physios) but I've also had fantastic physio in the past that has really helped me.  It's hard work living with constant pain and the support of a properly informed consultant and/or pain team is so valuable, I really hope you can get the help you need.  

Hope everyone's feeling as good as they possibly can!!  
xxx J


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## Mrs Rock

Jepa you've had a very hard time, I'm so sorry about your miscarriage and also your pain flare up.  Very happy to hear you're about to do FET.  I'm about to start DRing for yet another go.  I've had 2 miscarriages now but I also have my daughter and she makes the pain I went through with the mcs, especially the first one, pale by comparison to the joy she brings me.  Massive good luck wishes to you, I really hope it will happen for you soon.


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## cornwall

Hi Jepa,

Yes, we're still here - don't know if that's a good or a bad thing.

So sorry about your miscarriage but well done for meeting deadlines with work (can I ask what you do?). Pain flare ups are horrible. Like you, I try to keep active, keep working and have the occasional holiday. Of course, I suffer as a result. I tried giving up work for a while to see if my health improved. It did but only a little and the guilt of not working at all made me depressed so I started working again. Now, I have some sort of balance with daily meds, lots of rest and a little work. I've had to give up a lot of the things I enjoy though. 

I hope your next cycle is successful. I'm aiming for ET towards the end of July so I think you're just a little bit ahead of me. 

Mrs Rock, good luck with your next cycle. 

I hope you will both keep posting here and I'll do the same. If we are lucky to get our BFPs, we can support each other


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## ickle_hamster

Hi ladies - hopefully someone will still spot this.  Am so fed up!  Went for my teach today and everything went really well but just got a phonecall saying that a doctor (not a consultant and not mine) who the nurse spoke to wants me to stop all painkillers except for paracetamol before starting treatment.  I'm currently taking codeine, paracetamol, diclofenac and tranexamic acid (which I knew I'd need to stop) with oxynorm as required, which I'm managing to not do very often.  Am so ****** off and feel really disheartened - do they think I LIKE taking painkillers every day?!  With the best will in the world, I'm not going to manage 9 months plus treatment on paracetamol and is it really a good idea to kill myself at the first hurdle??  I can't get hold of my pain specialist or an appointment with my GP and lthough the nurse seemed nice and sadi she understood my worries I feel like a cow.  The best she could say was that she would get it brought up with the consultants at their meeting on weds but feel like it' a losing battle coz it's going from me, to a nurse and then them and then back through someone else too - she probably won't even be there so it's even further away.  Feel like nobody understands and that they don't get that I would manage without anything and everything if I could......  Am completely deflated and feel like it's all going wrong already


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## Worry All The Time

Hi - just got this notification and apologies for the abruptness but check back through my posts on this and you shoukd(if I remember correctly!) see details regarding me being told to stop all meds and the disasterous outcome....
Basicallyi had a miscarriage and my pain management consultant went balastic and I went back on pain meds immediately for all other cycles.
Have now got an amazing baby son, 6 weeks old tomorrow (delivered 4 weeks early but due to non pain related complications - I developed OC - nothing is simple with me!!! ;0)
No issue with pain meds transfer and DS is fit and healthy)
PM me if you want any more detail but my advise would be ... Do not do anything drastic without conferring with your pain specialist as there is a proven link between MC and unmanaged pain. Also my OB decided not to reduce pain meds towards the end of pregnancy as he figured there was much greater risk having me bed bound / reduced mobility compared to the risk to baby but the neonatal team were involved in delivery in case there was an issue.  The issue we had was related to the premature delivery and not opiates)
Good luck x


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## cornwall

Feel I need to add to the current conversation. Had my third cycle in July and got a BFP! Went to see GP that day but my own GP was away so I saw a different one (who I'd never seen before). He told me to stop all meds immediately: duloxetine, MST, co-codamol mainly. I did as I was told and had a horrendous time - total insomnia, pain flare up, brain zaps etc. It was two weeks before I got to see my own GP and he immediately put me back on everything expect the duloxetine. I had contacted my pain clinic to inform them but didn't get a response.

Well, I lost the baby at about 7 weeks - possible ectopic which was reabsorbed. I was in and out of hospital for a couple of weeks having scans and blood tests. The EPU added codeine and some anti-emetics to my meds.

I saw my pain consultant last week. I told him I would be trying again so he has not put me back on duloxetine or anything similar. I am staying on MST and codeine. He did trigger point injections there and then and said he will contnue with them if/when I get pregnant. He also listed other treatments/meds I will be able to take.


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## Jepa

Hi, it's been ages since I've been on this board but I thought I would pop back in and see if anyone's around to say hi to.

Thank you for your well wishes Mrs Rock and Cornwall.  It does make a difference having people with insight into both infertility and living with chronic pain to check in with.  Thank you for your kind words.  It has been a difficult year (few years really) but I believe I'm in the process of turning some big corners. Mrs Rock it lifts my heart to read the joy your daughter brings you, and I wish you and her every happiness.  

My FET mid year failed    .  No real surprises on OTD, though, as the ET itself was a complete [email protected]&* up, and pretty much all hope drained at that point.  The result really just confirmed what DH and I already knew  

However, on the better news front, I'm currently in the 2ww for my second FET.  This time I was able to get them to do a natural one (becasue I'm paid not nhs now I have more choices) which was a dream compared to any other IVF I've had.  NO DRUGS at all until ovulation and now I;m on hormonal support and bloodthinners only.  I saw the same lovely consultant the whole time and the ET was a dream.  Also had an endometrial scratch before the cycle started which I hope will help, and everything has gone like clockwork as far as we can tell.  I'm now 6dp5dt with a single embryo (my other problems mean twins is not a risk I can knowingly take) and feeling hopeful.  OTD is 29 Nov but my clinic make us wait an age.  In reality I've given myself an unOTD of tomorrow, so if anyone reads this before them, please send me good luck!

Ickle Hamster I cannot believe the advice you've been given.  That is so completely irresponsible and misinformed  !!!  Like you say, you're on this medication for a REASON, and for doc to simply stop it is stupid, not to mention dangerous.  Most of what you've noted down is not specifically contra-indicated in pregnancy and should be advised to be used where the need is great, as it clearly is.  I really hope you've managed to get some informed medical advice from someone who understand your situation and are getting some support.  
Other than that, I really hope your treatment is going well?

Worry all the time and you too Cornwall for your temporary bad advice (I'm glad you're now getting some sensible input!), heres some extra   to throw at the irresponsible non-pain-management you were given by morons.  Bah,  *&%! and  .  Seriously, though, it   me off that people who we rely on to look after us are so often so misinformed about pain management and do not take seriously the very real effect it has on our lives, that we wouldn't even be asking for it if we weren't desperate and doing everything we could to try to get on with our lives.

Ah, rant over.

Worry all the time, congratulations on your baby son!!!  That is just such wonderful news and I look forward to an update on how you are getting on when you get the chance.  I'm imagineing time may be just a little it scarce at the moment...  but would love to hear how things are going.  Very very happy for you     .  And well done!  I think you (and the other mums on here) deserve a big, shiny, proud medal (as do those of us who are not yet mums   ) !

Cornwall, how are you getting on?

Reso?  Crazychickenlady?  Daysleeper?  WilKo? Wishing very best to all of you

My big mission recently has been sleep.  I've normally tried my 'best' with it but in some way's given up becasue it feels like fighting a locing battle if my pain is bad becasue the pain just wakes me up grrr.  But recently I've made a sustained attempt to improve it, trying lots of different things at onece, from sleeping tablets, to acupuncture (as much as I can afford at least), to ear plugs, to special teas, to overhauling my 'bedtime routine, to adequate pain meds at bedtime and overnight, to hypnotherapy, to ... and plenty more.  The byproduct has been that I've also been recording just how much I sleep.  If I measure generously (ie if in doubt, note it as asleep) I have gotten an average of 3 hours 6 minutes sleep over the past 28 days.  Kind of demoralising, but also good to have a baseline to begin from.  The breakthrough?  The night before last I slept for almost 6.5 hours!!! The trick being to take 2 sleeping tablets at once, and have everything else perfect too.  Last night unfortunately I dropped down to 4 low quality hours, but even that is an improvement on average.  I did feel amazing yesterday - the 6.5 hour night was after 2 better than average nights in a row too, so I really felt the benefit.  

So here's hoping I'm turning the corner! And here's begging for anyone's sleep tips   ... I'm sure this is the place to look for them! Anyone have anything that works for them?

Big   and   and   and   to everyone here.  Good to touch base with you all and hopefully I'll get some news back... And wish me luck for tomorrow and for OTD! x


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## Worry All The Time

Jepa - BEST OF LUCK!!!!!   Here's hoping for   

Will catch up next week - am so disorganised and tired but wouldn't change it for the world - he simply is my sunshine  
X x x


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## pinkishgirl

Hi,

I'm about to start my drugs (short protocol) late jan all being well and this is my first IVF attempt.

TTC since 2010 when got married and all set for IVF in 2011 when realised my bone density was rubbish.  This partly due to no periods and lack of oestrogen and partly as susceptible to this due to health issues (hypermobility syndrome and fibromyalgia).  Anyhow, 2 years on and lots of hard work and its improved slightly and got go ahead for IVF!  Wahoo!

Been very open with work (manangers only) and they know I'll take as much time as I need so although work is a great distraction at the moment its also a reminder as kinda doing mini handovers, ensuring everything up to date and training colleagues up so they don't miss me too much.

Fingers crossed this is a lucky thread and whilst being positive trying not to be too optimistic much in case unsuccessful then not really heartbroken as heard the first time can be more a 'testing' go to understand what works.  Heard quite a few successful on their first though so hoping we're the same then we can use the precious pennies on the actual baby and whilst off work instead of spending them to get the baby!!!! 

Really concerned about how the drugs will react with my fibro / hms.  Suffer mainly in hips, back, and knees the most with hands also flaring when not using my specialist equipment / help or do muck in cooking.  Got to be benefits right (look on the bright side) and having my DH cook most nights is one of them so I can rest more after work.  Currently manage the condition through regular private physio, physio based pilates for strength, paracetamol and tramadol for those really bad days.  Used to take amitryptyline but been off since TTC and reducing amount of time take tramadol and heard its not safe for the potential baby and after so long waiting want to do nothing to put any additonal risk in place.  All my hard work in physio has slightly helped manage the condition and reduce the intensity and length of the flare up which can only be a good thing.

If anyone else has experience of this please share as worried although excitied about the journey we're about to commence.  Also worried about how I'll respond during pregancy and any possible labour.  it'll be worth it for the end result but any hints / advice etc will be greatly appreciated and would love to talk to others in my situation.


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## cornwall

Hi Pinkish Girl,

Very best of luck with your cycle. I can't give you much advice but you seem to be well organised and it's good that your managers are generally supportive. I stoppped duloxetine when I got a BFP in the summer. Sadly, I lost the baby but decided to stay off the duloxetine ready for my next attempt. My pain consultant has been very supportive and is helping me to manage my pain without taking too many medications. He also said that some women find their fibro symptoms ease during prognancy so perhaps you'll be one of the lucky ones.

Is there anything you can take instead of Tramadol? I've been told I can continue to take morphine until the third trimester, although obviously would want to keep the dose as low as possible. 

As for labour, I really wouldn't worry about that yet. Wait until you've got your BFP and then you can plan things with your midwife and doctors


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## pinkishgirl

thanks for your reply cornwall.  I also use heat and tens when req so I plan to up the use of these instead of the tramadol on particularly bad days.  Already trying not to take as much medication unless really really need it to try and reduce any potential impact.


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## reso

Hi, and firstly so sorry for going missing.  My pain levels shot up, I got PND and then found myself amazingly, unexpectedly pregnant again which is therefore putting more strain on me pain wise, as well as trying to keep up with a 10 month old who is into everything, especially things he knows he isn't supposed to be!

Jepa, I hope the sleep in improving for you, it's a huge issue isn't it.  I also have everything crossed that things will work out for you soon. 

Worry all the Time, how are things? 

Cornwall how are you doing? 

Hi Pinkish Girl.  I came off my meds at the beginning of the 3rd tri and was on bed rest for the last month.  I was given a tour of the SCBU so I would know where/what was happening but my team were really good through pregnancy and labour.  We had lots of plans in place and the thing to keep focusing on, and which I was told repeatedly by my consultant, was as long as they are aware of everything you are on then they can deal with it.  The issues arise when pregnant ladies come in and they don't know what they are on or whether they have taken anything and are not set up to deal with the baby immediately.  I wish you every success in this cycle.


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## cornwall

Hi,

I didn't want to post this news earlier as I was worried something would go wrong. 
But - had my 12 week scan yesterday and everything is looking great! Can't quite believe I'm actually pregnant  

My GP, midwife and pain consultant are all being so supportive. I couldn't have hoped for anything better. I'm staying on the morphine for now and will see how I feel as I start the third trimester. Everyone has said it's ok to stay on the morphine though. It can affect baby's breathing at first but at least they know what I'm taking and how much so they can prepare for things. Baby will have to spend a few days in hospital just to check for any withdrawal symptoms. I will come off the korphine if I can but at least I'm not being forced to do this.

Pain consultant said a lot of women with chronic pain conditions see an improvement during pregnancy. So far, my pain had got worse though so I'd be happy if it just stabilised. Must admit, mornng (all day and night) sickness isn't helping but I won't complain cos I know it will all be so worth it in the end.

Wish everyone success in your next cycles/pregnancies.


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## reso

Oh Cornwall, congratulations!

I had hsg and I wonder if it is down to the medication as well so don't be afraid to ask for help.  If you can't manage much a teaspoon of water every 15 minutes is better than nothing. 

That's what I was told, as long as they know what you are on they can be prepared.  If you have any concerns though ask to speak with / have a tour of the SCBU.  We met with a consultant paediatrician and a tour was arranged so we would know exactly what would happen, where we would be and it took some of the uncertainties out of it. 

Also I had no preferences for the birth, my birth plan said as long as the baby was born safe they could do what they liked.  My consultant also talked about an epidural for me because they wanted to eliminate as much pain as possible so again, that might be something to bear in mind. 

Good luck though, I hope the sickness passes soon for you.


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## cornwall

Thanks Reso,

Sickness is beginning to ease off now and I am managing to get some fluids in. I am due to see the obs consultant next month so can then start to plan ahead. Like you, I have no aspirations for the birth - just as long as baby and I are safe and well. If we both spend a few days in hospital, then at least I'll know we're being cared for properly.


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## Jepa

Hi everyone,

I know it's been ages since anyone has posted on here but I really wanted to post and update with my news and see how everyone else is doing too.

Cornwall your little one must be well and truly born and bouncing around by now.  I truly hope everything has gone well for you        I'd love to hear news of how you're doing?

Pinkishgirl Congratulations!!! I read down your signature and looks like your cycle worked out well for you and your lovely daughter.  I hope motherhood is treating you well!!!

Reso, Worryallthetime, Mrs Rck, Ickle Hamster, Crazychickenlady, VWilko, Daysleeper, and any I've missed - I hope you're all good and happy and managing your pain as well as possible.  Again, I'd love to hear any updates on how you and your bugs are doing? Sending best thoughts…

AFM, I've had a continuing rollercoaster, of which I'm right now very much on the UP part of.  After focussing as much as possible on getting my pain levels under control and trying to sort my sleep out, I got magically knocked up in August last year!!!  Completely over the moon, I was every bit equally devastated when I miscarried shortly afterwards  .

But incredibly I conceived again as a natural miracle on New Years Day this year!!!  I'm now 12w1d pregnant and had my 12 week scan yesterday.  Everything was better than perfect and I am now believing more and more that this is really happening.

The scan was amazing and beautiful.  Our little acrobat wriggled and danced around during the entire scan and was literally squirming all over the place and stretching arms and legs in all directions, putting tiny fingers tiny mouth and generally being full of beans.  SOOO cute!  I can't believe how much incredible detail can be seen already - Fingers and toes and eyes and nose and brains and kidneys and all the little knobs on the spine and so much more. Such a world away from the last scan we had only 2 weeks before...  

Surprisingly they also processed my bloods while we went off for coffee so we got to find out the results for the combined test the same day, which were that our chance of any chromosomal issue is very very low - a particular relief considering that all these years spent trying to get knocked up means my age now starts me out at high risk.  But back firmly in the very low risk box now, fortunately.  I feel so lucky      

I'm still on all my meds, and had clexane, aspirin and strides added to the mix for 1st trimester because of my recurrent miscarriage history.  But I have a plan to reduce opiod based medication leading up to the 3rd trimester and to be on as little as possible by then.  In any case I'm being looked after by a small army of consultants who have all been very supportive and so far shown really good understanding of the various risk factors and complications of my condition and my individual history too.  So at the moment I'm feeling very well supported and very, very much ready for it!

Anyway, I really just wanted to pop on here and gush with some good news, as I feel like I;ve almost always come on to moan in the past.  I'm just so over the moon that this is happening!!!

Hope to hear back from some of you.  Very best wishes anyway  
We couldn't have been happier.  This really feels really really real now!!!


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## Uber Barrens Club

Hello ladies

Don't know if anyone who this thread is relevant to is still on FF but I thought I'd just jump in just in case 

I'm currently TTC with chronic pain - I'm PCOS and only just come off the pill, but because I've been anovulatory every time I've been off the pill, am due to start Clomid pretty soon.

I have long-term spinal pain due to smashing my coccyx and sacrum up, having my coccyx removed but having a v prominent sacral stump, and my pelvic muscles and nerves being all over the place post surgery (12 years ago!)

I've been round the houses getting a pre pregnancy plan in place for pain management  - my pain consultant is awesome and admitted the limits of his expertise on pain medication's impact on the foetus, i.e. he could make best recommendations but wanted to liaise with the OB who'd have a better understanding of foetal development, and would likely have more experience of patients with pregnancy & chronic pain issues. The OB also had a point of view, that married with the pain doc's view, but suggested it would be worth seeing a specialist in maternal medicine, a consultant obstetric physician (no, I hadn't heard of them either - the Doc I saw is apparently one of only five consultant obstetric physicians in the country!) who literally wrote the book on prescribing in pregnancy, as in addition to the chronic pain I also have epilepsy, which is another consideration to take into account.

He was absolutely brilliant, and actually had a different POV on meds than the other two consultants - but it was literally from the horse's mouth so am SO glad I went to see him. The pain doc and OB had said I could stay on my tramadol and oxycodone while TTC, but after a BFP would need to come off them and codeine / co dydramol / morphine were the only safe options during pregnancy - with tramadol a particular concern as animal model studies had shown it to be embryotoxic. The consultant I saw said I could continue with the tramadol (sparingly, not at my current frequency) as animal studies were v different to human and vice versa, and it was just Big Pharma being scared of litigation and it being easier to say 'it's not safe in pregnancy' than to attempt any research (as it's more difficult for pregnancy safety as not ethical to conduct clinical trials). 

If anyone is having issues with prescribing in pregnancy and is in the London area, I can highly recommend Dr David Williams - he heads up the high risk pregnancy unit at UCLH and was brilliantly helpful, both for the chronic pain and the epilepsy management, to get a plan in place.


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## Worry All The Time

Apologies everyone for being so so so terrible and not replying! I know I have been busy but December 2013 is taking the Michael!  Congrats and good luck etc and I wish everyone the best of luck on whichever path/merrygoround/roller coaster you happen to be on  .  Bananafish, I too was very lucky WRT Pain consultant and OB.  My NHS "complex obstetrics" consultant just so happened to inherit me from himself (he was with us either driving or monitoring cycles 4-8, he delivered our little guy(elective CS - seems both my DH and OB knew it would be a CS and I was the last one to come to terms with it LOL) and it was decided it was less complicated/dangerous for me to stay on my pain meds pretty much as they were.... Only diff was I didn't take any anti-inflammatory meds and instead took low dose diazepam (same effect as anti- inflammatory  at low dose it seems). Morphine stayed the same - steady patches and liquid and slow release top-ups as needed. Due to added risk to baby both from morphine and the fact I developed OC and delivery was a month earlier than scheduled (I don't do things the easy way!!) there was a NICU Alert in place.  Delivery fine but PANDA station and NICU bed required as his stats were off initially but he graduated from NICU to my room within 3 days and hasn't looked back 👍. Only ongoing issues are serious reflux and an allergy to dairy but they are not holding him back as he is coming in over 95 centile for height and just under 95 centile for weight! So aside from copious amount of puke at times life is pretty much perfect 👍 (ok, so pain is a bit of a pain again but I did really well getting away from back procedures etc. for 3 years! - met up with my pain consultant and am now scheduled for cooled RF again to help take the "edge off" but nothing is stopping me running after a very active toddler and I am loving every bit of it. 😏 on a serious note, DS keeps me moving - seriously fast reflexes required! And I believe I am fitter & healthier that ever and perhaps this may be helping me retain my mobility and minimise pain - that and simply not having enough time to dwell on it....
Long story short - we hoped for the best but planned for the worst and got a pleasant surprise but tbh I would do it all again (but don't think DH would survive another bout of sleep deprivation 😝)

WATT


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