There is hope have faith everyone

[Danielle_87]

Hi I haven't been on here in a few months but thought I'd post up a message of positivity. I had an ectopic back in april which was treated with 2 injections of methotrexate. We waited 3 months and thought it was going to be difficult as they had explained to us that it may not happen straight away and researching on the Internet that my egg quality might not be as good after having methotrexate. Im now 19 weeks pregnant and I'm so glad to have even reached this point and hopefully my pregnancy will continue right through. I can remember laying crying myself to sleep thinking will i ever concieve, the fear of another ectopic. It was awful the emotional strain. That's why I have posted this to let other women know it most diffently is possible. I hope this message sends abit of positivity to everyone that is searching for it.

Danielle xx

[EPT Host 22]

Hi Danielle,
Thank you for sharing your positive words with the women on this board. We share together in the experience of ectopic pregnancy, and it is always a bright lining to hear good news. I wish you all the best for your pregnancy.

With good wishes,
Michele

**********************************************************************************************
If we have been able to help you, are you able to help us with a small donation or by volunteering?
Further information is available at http://www.ectopic.org.uk
Email us at ept@ectopic.org.uk.
Our helpline is 020 7733 2653 (available Monday to Friday 10am - 4pm).
Detailed medical information can be found on our website. Please remember online medical information is NO SUBSTITUTE for expert medical advice from your own health care team.
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[Embetjack13]

Thank you for sharing your story. I am in the middle of an ectopic now and I am very confused so perhaps someone could help me please.

This ordeal has been going on now for over three weeks and I am constantly getting different information and advice from the hospital staff.

My story
BFP 30th October (over the moon!)
Started bleeding 3rd November - hospital said it's probably nothing come back if it gets worse but did a blood test
5th November - another blood test says not rising well and to expect the worst
7th November - more than double increase in hcg and a nurse says 'great news' luckily I am sensible and didn't get too excited (turns out she hadn't read my notes so didn't see that the levels were eractic and that I was bleeding for days!)
9th - small drop in levels and told 'you will probably miscarry in the next few days so go home'
10th - woke in agony and rushed to the hospital where they finally agreed to scan me and found ectopic in left tube, prepared me for surgery but then as the pain settled they changed their mind and sent me home to do 'expectant management'
13th - another blood test shows a really high rise so they said to come back tomorrow
14th - first shot of methotrexate given
15-21 no symptoms only the bleeding which has never stopped.
21st - hcg big increase again!!!
22nd - another shot of methotrexate
23rd - in agony with cramps for about an hour then nothing

I have to wait until Monday 28th to have another test to see if this has worked and one meantime I feel like a ticking time bomb as they said the risk of rupture is high.

Anyway my main question has been 'when can I try again and when should I start taking folic acid' inhabe had three answers regarding the folic acid!

Nurse one said - as soon as we discharge you when your levels hit 0 then take it for 12 weeks
Nurse two said - wait till levels hit 0 then do not take it for 12 weeks at all!! Then start taking it when you start trying
Nurse three said - wait three periods then take it for 12 weeks then try

All in the same department so how they all have differing opinions is crazy!

Does anyone know the actual advice please xxx

[Danielle_87]

Hi embed jack13 so sorry for the ordeal your going through. I started to bleed I was brought in for a scan and my bloods taken. My ectopic could not be found. I was the same I continued to bleed after my first injection I had alot of pain and rushed down to my epau tissue had came away but not the ectopic. So a second injection was given. I know it's easier said than done but stay positive your levels will go up but by day 7 should have dropped? What was the highest your hcg got to? You can't take it till your levels drop to below 3 as folic acid can stop methotrexate from.working. take it for 12 weeks before ttc. I also went to my gp to get her to check my folate levels before ttc just to make sure they where up. Also question your Dr about taking 5mg instead of 4mg of folic acid. As methotrexate completely strips your body of folic acid. Hope this is of some help I hope the methotrexate does work. Hang in there. Anything else you want to.know just ask. Xx

Danielle

[Embetjack13]

Hi Danielle

Thanks for your reply. I am just at the hospital now. I had blood tests this morning and the results said my levels had dropped from 398 to 106 so that's a really good drop. I'm relieved but she said she had someone still rupture at 17hcg!! So that's scared me a bit. I told her that I'd had loads of differing opinions and she said the same as you, to take folic acid for 12 weeks from discharge, she apologied for all the different advice I'd been given.

X

[Danielle_87]

I went through the same I even got told to wait longer before ttc by some drs and nurses it was all very confusing. Great news that's a good drop fingers crossed it starts to drop fast now. Yeah I was told the same that it can rupture at low levels but stay positive. I felt the exact same as you was scared to go out if the house just incase anything did happen. The minute you feel shoulder tip pain or any extreme pain you go straight to the hospital. You know your own body that's what I always say. Tbh I thought this pregnancy was another ectopic as I got the pain on my lower side. Felt the exact same but turned out I had a cyst on my ovary. Still knew something wasn't right, so always trust your instinct.

Keep me posted on how you get on with your hcg levels.

X

[Embetjack13]

Thanks. I've said I'll go back to work on Wednesday because I am feeling so fed up of sitting around all day worrying about things and the future.

I asked her today if I should wait longer than 12 weeks after being discharged and she said 'we used to tell people 6 months but we don't now' I feel like I should wait longer to be on the safe side as I would hate to miscarry or risk any birth defects but I'm also keen to get pregnant as soon as I can because I am older and don't want to put it off.

November has been truly awful!

Xx

[redfox199]

Thank you for such a positive post! Take my congratulations on your pregnancy ! take care of yourself and your family. Wish you all the best!

[EPT Host 20]

Dear Embetjack13,
I am so sorry to hear of your ectopic pregnancy and loss.
I am also sorry for the conflicting information you have received regarding folic acid and methotraxate injections. We find that healthcare professionals are often confused about the advice to give women.
Some doctors (mistakenly) think that because they have administered a second dose of Methotrexate that that they must also double the recovery time for the body. However, even in a second dose of Methotrexate, the dosage is still much lower than for treatment of other conditions and is still metabolised by the body very quickly.
Our medical advice is that, if you have had one or two injections, you should rely on your blood test results as an indicator of what is happening in your body and wait until your hCG levels have fallen to below 5mIU/mL in blood tests and then can restart taking vitamin/folic acid supplements. We advise that you then take a folic acid supplement for 12 weeks before you try to conceive. This is because the Methotrexate may have reduced the level of folate in your body which is needed to ensure a baby develops healthily. The Methotrexate is metabolised quickly but it can affect the quality of your cells, including those of your eggs and the quality of your blood for up to three months after it has been given. The medicine can also affect the way your liver works and so you need to give your body time to recover properly before a new pregnancy is considered. A shortage of folate could result in a greater chance of a baby having a neural tube defect such as hare lip, cleft palate, or even spina bifida or other NT defects. This is why the "wait" and then taking folic acid for 12 weeks before trying to conceive is so important.

I hope this helps in clearing up any confusion,
Sending much love,
Karen x

**********************************************************************************************
If we have been able to help you, are you able to help us with a small donation or by volunteering?
Further information is available at www.ectopic.org.uk
Email us at ept@ectopic.org.uk.
Our helpline is 020 7733 2653 (available Monday to Friday 10am - 4pm).
Detailed medical information can be found on our website. Please remember online medical information is NO SUBSTITUTE for expert medical advice from your own health care team.
**********************************************************************************************

[Danielle_87]

Thankyou redfox. Yes embetjack I just waited the 12 weeks and I had 2 injections. you would be amazed on how quick the drug exits your system like karen has stated its more what it has left behind I.e the drop in folate acid and can take longer for your liver function to go back to normal and your white blood cells may go down which means you're more likely to get infections. I never had a drop of alcohol for the 3 months. My own Dr didn't even know that methotrexate could be used to treat an ectopic. So just listen to the advice from your epau. I had my anomaly scan done today and all went well. Was nerve wrecking but utter relief.

Danielle
Xx

[Embetjack13]

Thank you for your message. I saw I doctor on Saturday for something unrelated and mentioned the methotrexate and they had no idea that was used either so it won't be any good asking her for advice. I think I'll ask her to check my folic levels though at some point because I'm scared I'll ttc before they are perfect even if I wait and take FA for 12 weeks, I'm paranoid about it!

My levels yesterday had dropped to 68 so hopefully it won't be too long before I'm discharged now.

Good news about your scan xxxx

[Danielle_87]

Yeah drs can be abit clueless about it. Yes I got my gp.to do a full.blood count before trying ttc she did my thyroid, liver function, folate levels etc. Remember to question the folic acid. They may just prescribe you 4mg which is the normal dossage.
mention about the 5mg as you've had methotrexate. I took the 4 mg then the min I fell pregnant they upped it to 5mg apparently it's now protocol for all pregnant women to take 5mg regardless. It's diffently something to look into. That's good it's falling lower shouldn't be too much longer now.

Xx

[Embetjack13]

Thanks. I will go and see my gp once I am discharged and ask for the 5mg then. I guess each hospital is different and depends on where you are in the uk too as to what the protocols are because even from hospital to hospital they differ. It needs to be more standard and then hey all sing off the same hymn sheet.
I will also ask for the full blood count before I ttc so thanks for that info.

Xx

[Holliexxxxx]

Hi everyone, my first post & hoping you can help.
I am on the beginning of the roller coaster had my methotraxate 3 days ago & waiting for scan & bloods on Tuesday & just hoping & praying they drop 15% because the hospitals have told me I have to wait a further 3 months for each injection?
But from your lovely story - thank you by the way!! The hope you've inspired in me!!! I really needed it today!!!! it sounds like you started trying after 3 months after 2 injections.
I'm really hoping my hospital is giving out false information as the thought of waiting 6 months to even try makes you desire this little miracle even more!!!!!
xxx

[Danielle_87]

Hi hollie yeah we concieved after 3 months of waiting. Although before I did I got my own gp to do a full blood count and make sure my folate was high. My local epau explained the life expentancy of the drug in the body it leaves quite quickly it's what it does. For example it strips your body of folate which is needed can effect your liver and leave you prone to infections. Always have hope as I'm almost 27 weeks into my pregnancy. Hopefully it continues to go well. Glad my message gave you some support. Has your hcg levels dropped enough? Xx

[Danielle_87]

Hollie I was told by many different health professionals different lengths of times to wait but was always told to listen to.the advice that came from the early pregnancy assessment unit. I had researched it online and some was saying six and others 3 but I had confirmed with drs and nurses in my epau and they assured me 3 months. Not sure if it's different protocol in some areas of the UK I live in Northern Ireland. Wishing you all the best and try and take some much needed you time. Xx