Feeling let down - Mthotrexate

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Hi, I apologise for the long post and appreciate if anyone reads to the end.

I have been ttc with my partner for the last 8 months after falling pregnant with my twins immediately nearly 4 years ago.

I was expecting my period to start on the 24th April and when cramping started the next evening for a few hours I thought it was just a day late. The next morning I had some brown watery spotting which carried on for a few days. I did a pregnancy test on the 27th which was faintly positive but I just knew something wasn’t right. I phoned the doctor on the 29th April and went to the EPU on the 3rd May. I had a scan with nothing in my womb so they called it a PUL. Bloods were 423 so was told to come back 48 hours later to see what was happening as it may be too early but also I might be miscarrying. My bloods had dropped to 345, not rising as expected but also not dropping enough to show a miscarriage.

They asked me to come back on the 13th May for another scan. This time it showed nothing in my womb but a mass in my right tube. They took bloods again and told me they would phone me that night with the results. my bloods had gone back up to 467 so they asked me to come back on the 14th to discuss option.

They offered me medical or surgical management and with very little info asked what I wanted to do. I was beside myself completely unequipped to make a decision as I had no idea what to decide. I called the doctor back in and asked what she would do in my position as that’s how little she had explained to me what either option really involved. Other than that methotrexate is a chemo drug not 100% guarantee to work and surgery would mean removing my tube.

I went home completely shell shocked and crying my eyes out. I then spent the whole evening reading this forum and the website and googling both options and flip flopped between both every hour or so. On the 15th I called back and spoke to the doctor again, asked some more questions based on my research and coming to my own conclusions and settled on the injection, although I was so unsure whether I was making the right decision.

I went back that afternoon and after waiting 2 hours was taken into the room and given the injection. They then realised they were meant to take bloods first but then said but we’ve given the injection now so weren’t going to.

I was so upset about the whole thing the nurse then said I was so lucky I had options, she’d been in my position and hadn’t been so lucky and had to have her tube removed. I kindly told her I didn’t think either option was lucky and that I was now anxiously going to wait while I have two little ones at home depending on me worried about every ache or twinge that I was going to be rushed into surgery because I’d delayed it and it hasn’t worked and it had become serious. I also asked her to confirm that day 4 bloods would go up as per what I’ve read on here - she told me no no they were expecting them all to come down.

It was only then my husband noticed on the sheet that it mentioned reheus negative blood which I am and asked if I needed anti-D. She then said she’d ask, came back and told me yes and that they would take bloods now as they needed to for that anyway.

I then waited another 2 hours for the anti-D by which point my bloods had come back and were now 699.

She told me that I needed to come back on day 4 (16th) as the injection day was day 1 (13th). And day 7 would be the 21st.

I went back on Friday for my day 4 bloods which are now over 900. I’m now so worried as although from what I’ve read it’s normal to go up she said she was expecting them to come down???

Also are the days right? Because when I phoned for my results there was a note to say to come back on the 22nd which doesn’t align with what the nurse told me.

Please can someone tell me how the days work in terms of injection day to day 4 and day 7. When should I go back? Also is the fact it’s fine from 699 to over 900 normal? Is this ok?

I can’t help but feel really let down by the trust, I have no idea what to expect or what’s right or wrong or what on earth to do or think.

Any advice or reassurance would be amazing.

So sorry for anyone else going through this x

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Also to add that it’s been several days since my injection and I’ve not had any cramping or bleeding or anything… does this mean it’s not working? I was expecting to start bleeding but I’ve had nothing

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Dear Lucy-lu,

I am so sorry to hear of your ectopic pregnancy loss and the worrying time you are going through.

I was also treated with methotrexate, so fully understand the concern and anxiety that comes from waiting to see if the medication is working.

Despite what your nurse said, it is common for the hCG level to rise on the day four blood test because the action of methotrexate is not instantaneous, so the cells will have continued to divide for two or three days after the injection was given, and some cells release more hCG when they start to disappear. Your doctors are looking to see a drop in your hCG value of at least 15% between days four and seven. If there has not been a 15% drop, this is when the doctors will consider a second dose of methotrexate or surgery. For you, day 7 bloods should have the 19th, so I would contact you unit tomorrow (20th) and request a blood test.

Every 3-7 days, beta hCG levels will continue to be monitored to ensure that they are falling appropriately. Most only need single-dose methotrexate injection but in up to a quarter of cases a further injection may be required if serum hCG levels are not decreasing.

A few days after the injection, it is usual to begin to bleed and this bleeding can last between a few days and up to 6 weeks. Not experiencing vaginal bleeding after being treated with methotrexate is not something you have to be too worried about. Some will not experience bleeding as a side effect with this medical treatment option. To check that the treatment is working, it is important to attend regular appointments with your healthcare professionals to have your hCG levels monitored.

you may find it reassuring to read that methotrexate is at least as good as surgery in terms of subsequent successful pregnancies. This may be due to the fact that medical treatment is non-invasive, whereas surgery may risk factors like some scarring around the Fallopian tube.

We have more information on our website about methotrexate which I have added here and you may find useful.

https://ectopic.org.uk/treating-an-ecto … thotrexate

I am so sorry the staff seem to have not been supportive, especially with their choice of words. I remember one nurse saying to me that the worst bit about methotrexate therapy was not being able to drink alcohol. Looking back, I wish I had your courage to tell her that it wasn’t.

I know you have been left confused with what to do next, so I will summarise my thoughts for you.

You have had one injection and your hCG bloods have increased as expected, but you need another blood test tomorrow (20th) to check it is now falling.

Some women don’t bleed following methotrexate treatment, but you may start light bleeding or cramping.

If your bleeding becomes heavy, you develop worsening tummy pain, new shoulder too pain, pressure on passing urine or having a poo or feel dizzy and unwell, you must seem urgent medical advice by calling your early pregnancy unit or attending your local A&E.

If your hCG levels continue to rise, they may consider a second injection or if a scan shows fluid in your tummy or you are becoming unwell, they may likely offer surgery.

Do not take any pre-natal vitamins or any folic acid supplements and avoid foods enriched with folic acid until your doctors are sure that the drug has worked and hCG hormone level has returned to non-pregnant.

You should not do any heavy lifting or housework until the hCG levels are dropping consistently and should only undertake gentle exercise, such as walking, until the hCG (pregnancy hormone) is at non-pregnant level.

You should avoid sexual intercourse until your hCG is down to non-pregnant level.

I hope this information is helpful.

There are also obviously emotional impacts of being diagnosed with an ectopic pregnancy, having treatment that means we need regular monitoring to check it is working, losing our babies and concerns about the future. Experiencing any one of these is an ordeal, putting them together is immense. Be kind to yourself, your thoughts and worries are normal. You deserve to have your voice and concerns and questions answered properly by the medical team. Do not be afraid to write questions down to ensure you get answers. All of our information on our website is medically backed by world renowned experts in ectopic pregnancy and follow NICE (National Institute of Clinical Excellence) guidance, which are standards hospitals should be using to treat patients. Do not be afraid to show them information from our website and ask why your care has deferred from the usual pathways, or why information given to you has been inconsistent. I know if takes a lot of strength to do things like that when we are at our most vulnerable, so please don’t feel you have to. It may just give you more evidence and support if you feel you wish too.

We will be here for you every step of the way.

Sending much love and warm hugs,

Karen x

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