fertility

HELP! Im an RPL warrior get me out of here!!!

I know right now the world is a crazy place and life is so different for every one of us, the virus is causing so many saddening deaths & our whole year has been turned upside down. I’m aware so many people are probably going to read this and if they are not an rpl sufferer they will probably think ‘get on with it, worse things are happening right now & people are dying’.

Yes that is 100% true however that does not change the fact that I know if you are a woman going through recurrent loss and in the sinking whirlwind that is rpl I know that right now you are struggling and you are afraid to say what your going through and how you are feeling out of fear of sounding insensitive or being judged. Your mental health matters and how you are feeling and coping matters too and so I thought I’ll write a blog for you because you all know me… I’m not afraid to say it and will say it how it is!
There’s so much that I can write about and

I’m going to try cover a few scenarios that you could find yourself in right now, lots of you are writing to me and I’m trying my hardest to get back to everyone, but one thing I must share with you all is that you are not alone and even though you may think you are the only person stuck in this nightmare let me tell you, there are many common themes in your emails and messages to me right now, so don’t feel guilty or bad for saying it out loud.

I know for a lot of women covid-19 has made their journey come to a halt for the time being, early on at the beginning of all this one of my closest friends was starting her first ivf round after years of infertility & suffering two losses, I felt her excitement and her positivity that this was her (and her partners) moment and then sadly after beginning the process here in the UK starting the meds and the uncomfortable jabs everything had to come to an emergency stop due to current travel restrictions.

The reason I said emergency stop is because it felt just like that, just like when your driving instructor taps on the dashboard and says stop and you slam on the breaks feeling you’re heart go to your mouth and the seat belt tighten around your stomach, I’m sure that’s how it hit her as I felt it too. That chance that month was taken away when her follies were ripe and ready to go after much turmoil over low egg reserve and other battles she has had to face, I felt sadness and desperation to be able to do something to help her but ultimately I can’t, I can’t make it right, it’s unfair, it’s crap but I can say I understand this situation is bad, it’s bad, it’s sucks and regardless of what is going on outside of your own home right now, sometimes you just need someone to agree with you that it’s unfair and to hold your hand, even if that is virtually right now.

Whilst some people have had the option taken away from them and their ivf or medicated cycle had to end, there are also thousands of you who have been left with a limbo of having to make a choice as to what to do right now, on top of the stress & anxiety you normally carry you have to make a decision and constantly question yourself if you have done the right thing. So many of you have asked me what would I do right now if I was you… so I’m going to try answer some of you here, again I just add this is just my own personal opinion and I am not medically qualified to advise you. Here are some of the questions I’ve been sent in the last two weeks, I’m posting them here because I just know that so many of you will relate to them and will hopefully feel less alone.

  1. Should you try? 
  2. Will I ever get my rainbow? 
  3. I’m anxious people will say to me ‘why are you not pregnant it was the perfect time?’
  4. Will it ever happen for me now, will I be lost in the system? 
  5. Would you have gone ahead with your treatment plan for immune issues?
  6. Should I consider my age and fertility in all of this? 

Question 1 & 5 I can answer in the same conversation, it all depends on what your individual situation is but I’ll try give my opinion on a few positions you might currently find yourself in. If you are an rpl patient who has a treatment plan put in place such as progesterone, heparin, aspirin etc whether you have or haven’t tried out that plan yet personally right now I would go ahead and try IF you have access to your medications or already have the prescriptions etc and know that your clinic will take care of you and prescribe you if you run out.

However you do need to consider that if you were to fall pregnant that reassurance scanning for anxiety/rpl related reasons is currently not advised in the up to date rcog document and therefore your local trusts epau most likely are not providing reassurance 6/9 week scans right now. So you do need to be able to handle and manage your anxiety at home at a time that you unfortunately can’t access those services due to covid-19 to protect yourselves and our nhs. PLEASE DO NOT THINK THIS MEANS YOU CAN NOT ACCESS URGENT CARE IF HAVING A MISCARRIAGE AS YOU CAN! If you are bleeding or in pain you must still seek medical help regardless of current situation with the virus.

If you are a patient with an immune protocol to treat an immune issue such as natural killer cells, thyroid antibodies etc like I was myself then my answer to the question would be no I would not continue to try right now. I would not have continued to take the drugs that are immune suppressors and would have put me at higher risk of the virus. I would stay away from the steroid medications particularly right now as you may have seen that steroid patients are on the nhs shielding list, it is not safe to take them right now. I know any hxdroxy patients will probably have read all of the articles about the research and trials into using hydroxy to treat covid-19. None of these trials or research are published right now and therefore I personally would stop taking it as I’m sure most clinics have also advised at this time. I must also say, steroid patients please don’t forget you just wean the drug if you were on it over 14 days and don’t just go cold turkey, make sure you contact your doctor to find out how they want you to wean in regard to your dosage.

Question 2 & 4 are closely related and come back to the horrid reality that recurrent loss is an out of control experience and it’s the painful desperation that absorbs you 24/7. It’s the needing to know if and when this torture will end and if you will get your rainbow. I can’t just say it’s ok you will get your baby as that would be unfair as it’s sadly not a reality for everyone however I’m a huge believer in hope and determination and that you must not give up. I know many will feel like they will be forgotten about now by their consultants and clinics with most routine things coming to a halt right now, but try take some some comfort in that your still on the list you will get that appointment your waiting for it’s just not going to be as soon as you had hoped.

Over the last three years I have spoken to thousands of women through various platforms all at different stages of their rpl journey and I have also been a long standing member of many online forums and I can tell you that the majority of women that were ‘stuck in the mud’ at the same time as me did end up getting their rainbow and the very few women that I know haven’t got there yet were ones with more complex & challenging circumstances but yet they still have hope and a path to go down.

Question 6 now comes in, age does often have to be considered where fertility is concerned and I know it’s a huge worry for lots of women that are concerned about their age and egg reserve/quality. Unfortunately unless you are going to do pgs tested ivf then there’s no way of checking the quality of your eggs you have left however you can have your egg reserve checked by doing an amh blood test and having an afc (antra follicle count) scan, the two results together can give you a good indication of your fertility status. However this would need to be done privately as it’s not a routine investigation on the nhs unless undergoing ivf, just as an idea the cost is around £400/500 ish to have both of these done. Given the current situation you would need to wait to have these tests done but I just thought I would mention them incase anyone is worried about their age and egg reserve. Personally if you are over 35 and don’t have any of the immune drugs mentioned above in your treatment plan then I would keep going right now, well that’s what I would be doing!

Question 3 is something that we are faced with on a regular day to day basis and yes may be heightened after the lock down if people decide to interrogate you about your situation. If people haven’t learnt to understand by now in life that it is completely inappropriate to ask someone if they are pregnant, trying to conceive or why they don’t have kids then I guess it’s always something that might catch you off guard. If you have got the strength then a response that would make them not ask again is the best way forward ‘actually I’ve had several losses and we are struggling to have a baby’ I can pretty much assure you that person won’t put you in that position again. If your having a bad day or not feeling strong enough then just don’t answer! Change the subject or remove yourself from the situation if that is an option, you have to do what’s right to protect yourself and think about your own mental health and sometimes that involves walking away from certain situations & environments.

Its a difficult time for everyone right now and not being able to see loved ones or maybe a friend that is usually your rock through all of this makes it all that little bit harder. You already felt out of control and lost and now a further layer has been added to your worry and anxiety, one thing that we do know though is that at some point (hopefully soon) this will end, this will be over and we will carry on. Keep dreaming, hoping, wishing and wanting.. this is just another mountain that we face but together we will reach the top and I know that you will not be beaten.

All my love – Crazy Fertility Queen 👸 xxx

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