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Management options - scared

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Enfys
Posts: 30
Joined: Wed Feb 28, 2024 8:17 pm

Management options - scared

Post by Enfys »

I’m really grateful for all the resources provided by EPT which have been invaluable in the past week or so.
After years of trying and lots of heartbreak with unsuccessful IVF, we had a naturally conceived pregnancy soon after I had a lap excision surgery for endometriosis.
Sadly last week the joy turned to devastation as I was diagnosed with a tubal ectopic. I’d started with pain and bleeding at 6 weeks. I was admitted to hospital and I had free fluid on the scan as well as a “donut sign” on ultrasound of a left tubal ectopic.
I was about to be taken to surgery. We were really worried as I’ve only just recovered from surgery. But then another consultant offered to see what happened with a repeat HCG and repeat scan. They showed the free fluid (internal bleeding) and HCG were improving a bit so they offered expectant management. They keep offering surgical management and stating the risks of expectant management. I am now home but we feel really that we’re in limbo and could still end up in theatre. My HCG didn’t quite drop the amount desired in 7 days. It’s so hard to make decisions when you’re so heartbroken and just don’t want this to be happening at all. I have repeat bloods and scan tomorrow.
I have been signed off work, but don’t know if it’s going to be enough. How long are people off with expectant management? Do you go back while HCG still not down to normal - it could take weeks couldn’t it?
I don’t know how much I can do activity wise. They’ve said to take it easy and no heavy lifting or sex. I get pain if I walk up hills or walk at a fast pace and bleeding gets worse. How long will my activity be restricted?
I feel really alone. I feel really upset when people talk about it as “the ectopic” or say it’s good that HCG coming down. Rather than that this is a baby we are losing and while the HCG needs to come down for me to be safe, it’s also completely heartbreaking to see.
Thanks again for all you do at EPT

EPT Host 20
Posts: 3193
Joined: Thu May 31, 2012 10:58 pm

Re: Management options - scared

Post by EPT Host 20 »

Dear Enfys,
I am so sorry to hear of your ectopic pregnancy and losses,
I have also replied to your other post, but I just wanted to check if your hospital offers medical management with methotrexate injection. This is often used if you are stable but hCG levels are less than 5000. It is less invasive than surgery and can help the hCG levels fall quicker than expectant management, but it is not suitable for everyone and some hospitals do not offer it.
I would suggest talking through all the options. I have added more information on treatment options here
https://ectopic.org.uk/treating-an-ectopic-pregnancy
Depending on the job you do, will depend upon she you go back to work, if you have a strenuous job and cannot alter your role, you may need to discuss your role if you need to get back to work. It is also worth remembering that you are grieving the loss of your baby and some people need additional time to deal with the emotional impact of ectopic pregnancy.
https://ectopic.org.uk/emotional-recovery

Recovery can take time and as you mention, It can take weeks for hCG to settle. You should not resume strenuous exercise or heavy lifting until your hCG levels are at pre pregnancy levels
https://ectopic.org.uk/physical-recover ... activities

Above all be kind to yourself and allow time to grieve and heal both physically and emotionally,
Sending much love,
Karen x

The Ectopic Pregnancy Trust
Registered Charity Number: 1071811
The EPT is awarded the PIF TICK as a Trusted Information Creator, the UK-wide quality mark for healthcare information
*************************************************************************
If the information provided here or through the EPT website has helped you, you can donate towards our support services, volunteer, or fundraise to raise awareness.
Further information is available on our website.
Email us: ept@ectopic.org.uk
We provide a call-back support line: 020 7733 2653. We are able to provide support in multiple languages including British Sign Language.
Take a look at our newsletters and subscribe to our mailing list.
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
*************************************************************************

Foreverhopeful
Posts: 4
Joined: Mon Feb 26, 2024 3:03 pm

Re: Management options - scared

Post by Foreverhopeful »

Hey Enfys,

So so sorry to hear about your losses and also your experience of IVF, my heart truly goes out to you.

Being in limbo is so hard and I can completely empathise with you on that. I had pain and bleeding for 2 weeks before we found out that my pregnancy was ectopic and it was so scary not knowing what was going on. I’ve also been under expectant management and it seems that things are resolving naturally but it is a scary process and my HCG levels are dropping very slowly so it feels like it could go on for a long time. My next blood tests are tomorrow and I’m really hoping things are continuing to resolve - although, I find it very conflicting hoping that your pregnancy will continue to fail :cry:

I’ve been signed off for 3 weeks so far and am due to go back to work next Monday (all things being well). I’m still bleeding (5th week of bleeding now) but I’m beginning to feel much better in myself, my dizziness and lightheadedness have stopped and I’m feeling much more positive than I was. A couple of weeks ago I was crying non-stop but things are getting better/easier now. I’m nervous to go back to work but also looking forward to things going back to ‘normal’.

Try to be kind to yourself and take the time you need to recover both physically and emotionally. I’m sure the Dr will provide you with another fit note if you’re still really struggling. It’s such a traumatic experience especially if you’re waiting to see whether expectant management will work for you.

Sending strength and positivity your way and keep us posted on how things go x

Enfys
Posts: 30
Joined: Wed Feb 28, 2024 8:17 pm

Re: Management options - scared

Post by Enfys »

Thank you Karen and Foreverhopeful, it means a great deal that you replied and your advice and understanding. Foreverhopeful I hope your return to work goes well xx

Enfys
Posts: 30
Joined: Wed Feb 28, 2024 8:17 pm

Re: Management options - scared

Post by Enfys »

Sadly things haven’t worked out well and I was admitted yesterday with internal bleeding and taken to emergency theatre last night. I don’t regret trying expectant management - if I could have avoided surgery (especially so soon after my endo excision lap) and losing my tube that would have been ideal.
I’m finding it hard that I’m on a ward of pregnant women (headache, hyperemesis etc).
I hope I’ll be home later with some cuddles from my husband. Thanks for making me feel less alone too xx

EPT Host 20
Posts: 3193
Joined: Thu May 31, 2012 10:58 pm

Re: Management options - scared

Post by EPT Host 20 »

Dear Enfys,
I am so sorry to hear that you needed surgery in the end. I also hope you are no longer on the ward. If you are, so not be afraid to speak to the staff to ask them for a side room if they have one, or away from ladies who are pregnant. It really isn't acceptable.

Following surgery, you should take it very easily for about six weeks. Your body will be using its energies to heal internally. It is normal to feel physically and emotionally exhausted during this time and please do be kind to yourself. Recovery can take time and some days will be better than others, one day you maybe ok and the next you maybe in discomfort or more emotional. This is perfectly usual and the healing process will go back and forth in this way for however long you need. It is important to listen to your body's signals and pain and feeling tired are your body's signs to tell you to rest. We suggest keeping a healthy balanced diet, drinking lots of water and resting. Once your wounds have healed, very gentle exercise such as a short walk can help, but please do take this slowly.
We of course will be here for you for as long as you need,
Sending much love,
Karen x

The Ectopic Pregnancy Trust
Registered Charity Number: 1071811
The EPT is awarded the PIF TICK as a Trusted Information Creator, the UK-wide quality mark for healthcare information
*************************************************************************
If the information provided here or through the EPT website has helped you, you can donate towards our support services, volunteer, or fundraise to raise awareness.
Further information is available on our website.
Email us: ept@ectopic.org.uk
We provide a call-back support line: 020 7733 2653. We are able to provide support in multiple languages including British Sign Language.
Take a look at our newsletters and subscribe to our mailing list.
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
*************************************************************************

Enfys
Posts: 30
Joined: Wed Feb 28, 2024 8:17 pm

Re: Management options - scared

Post by Enfys »

Thanks Karen. I am home now. We were quite upset at our treatment in terms of compassion and understanding as my husband was initially told he couldn’t stay to see me and then only when he pushed he was allowed to see me for 30 mins when I got back to the ward from theatre. Similarly the next day he was told he couldn’t visit until 2pm - he came earlier as I asked to be discharged ASAP as I didn’t want to stay on that ward any longer than I had to. They seemed to have no empathy for our baby loss. If I hadn’t just had a recent laparoscopy I would have felt very scared and alone too as no one gave any advice or assistance in getting up or going for wee etc.
I also had to push them for my note to be longer than 2 weeks and for it to say pregnancy related rather than just gynae procedure. They kept insisting I could go to GP for extra time. I have a physically demanding job so know 2 weeks won’t be adequate.
I feel ungrateful saying these things as I know they saved my life and there was good care in parts but some of these aspects really sour things. I don’t need to be opposite women singing to their babies or women being discussed on ward round as finding out they are accidentally pregnant only when come on with their bad sickness because they haven’t had to even try.
Anyway home now and thank you for the advice to be gentle with myself xx

EPT Host 20
Posts: 3193
Joined: Thu May 31, 2012 10:58 pm

Re: Management options - scared

Post by EPT Host 20 »

Dear Enfys,
I am so sorry to hear of this, it is something we at the Trust are trying to change by educating healthcare professionals as it is something we sadly hear all too often.
As a gentle message, some people need longer than 2 weeks off work also, sometimes up to 6 weeks, so do not push yourself and speak to your GP if you need longer.
Please do continue to lean on us for as long as you need.
Sending much love,
Karen x

The Ectopic Pregnancy Trust
Registered Charity Number: 1071811
The EPT is awarded the PIF TICK as a Trusted Information Creator, the UK-wide quality mark for healthcare information
*************************************************************************
If the information provided here or through the EPT website has helped you, you can donate towards our support services, volunteer, or fundraise to raise awareness.
Further information is available on our website.
Email us: ept@ectopic.org.uk
We provide a call-back support line: 020 7733 2653. We are able to provide support in multiple languages including British Sign Language.
Take a look at our newsletters and subscribe to our mailing list.
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
*************************************************************************

Enfys
Posts: 30
Joined: Wed Feb 28, 2024 8:17 pm

Re: Management options - scared

Post by Enfys »

Thank you Karen. I do wonder if I should in due course give them some formal feedback as I would hate another woman to go through what I did there.

LTQKVS
Posts: 43
Joined: Sun Jan 28, 2024 6:42 pm

Re: Management options - scared

Post by LTQKVS »

Hey enfys

I wanted to say I’m really sorry for everything you have been through. I was sent a text after discharge asking me to rate my experience and make comment, I commented that I thought it was insensitive to have pregnant women from A&E coming into the 4 bedded ward I was in with bleeding or sickness as I was trying to sleep after having my pregnancy and tube removed. I’m also planning on writing a long complaint from my beginnings in EPU to the gyne ward on what I felt was wrong in terms of the care provided - though it’s having the energy and time to do this.
I know the NHS is stretched and some of the staff were great but in general pretty unacceptable.

In terms of time off I’ve had 7 weeks and I’m back next week on a phased return- don’t rush back if you can afford it.

Take care x

Enfys
Posts: 30
Joined: Wed Feb 28, 2024 8:17 pm

Re: Management options - scared

Post by Enfys »

Thank you LTQKVS really appreciate your message and advice. I had 8 weeks off after laparoscopic excision of endometriosis recently so feel really guilty about more time but know I have to just take the time I need. The last laparoscopy I did have a post op complication so that didn’t help but I know I’m generally not a quick healer!
I hope that you’re physically feeling more yourself now. I am trying hard not to feel despair that I’m back to square one after taking 12 weeks to feel normal after the last lap.
Is your workplace understanding? I do hope your phased return is gentle xx

LTQKVS
Posts: 43
Joined: Sun Jan 28, 2024 6:42 pm

Re: Management options - scared

Post by LTQKVS »

You have been through so much you shouldn’t feel guilty.l but I know it’s difficult - I flit between feeling guilty and then feeling like I should be able to take the time off needed after everything we have been through.

I will be 7 weeks post op Monday and physically I’m feeling more like me, I had a post infection some extreme dizzy spells and really struggled the healing process has been a long one and continues to do so.

My work seem to be supportive one minute and then not so much, I just think they don’t understand - I had a come back to work interview and spoke about my tube been removed she thought I was talking about a drain not my fallopian tube!!!

Hope you recover well and manage to take it easy xx

Foreverhopeful
Posts: 4
Joined: Mon Feb 26, 2024 3:03 pm

Re: Management options - scared

Post by Foreverhopeful »

Hi Enfys

I’m so sorry that you had to go through this. Unfortunately I have also just been discharged from hospital following surgery. My appointment on Tuesday showed that my pregnancy has doubled in size and I was admitted and given the choice of methotrexate or surgery. It was the hardest day of my life. Drs pushed me towards surgery as it was the safest option for me and I had emergency surgery on Wednesday. Luckily I did end up choosing surgery as I had already ruptured which they couldn’t see from my scan so I would’ve needed surgery either way.

I’m really sorry that you had that experience in hospital. That sounds horrific and you’d definitely be within your rights to make a formal complaint.

I hope that you can begin to heal now that you’re at home. I’m sure it’ll take us time to recover both physically and emotionally. I just wanted you to know you’re not alone on this journey. Xx

Enfys
Posts: 30
Joined: Wed Feb 28, 2024 8:17 pm

Re: Management options - scared

Post by Enfys »

Oh gosh @Foreverhopeful it sounds like you’ve been on a very similar trajectory to mine! I’m so sorry you’ve had to have surgery. I’m glad though you’re safe. It is definitely a help to feel not so alone in it.
Please feel free to DM me any time.
I’m in quite a lot of pain with my incisions this time which I don’t remember being quite so painful when I’ve had my laparoscopy in December for endometriosis, I hope it settles soon. I was quite upset when I changed dressings like they told me to yesterday as my incisions are really messy, my belly button will never be the same again. After my last lap everything looked so neat from day 1. I hope you’re doing okay xx

ChaoticBlues
Posts: 126
Joined: Thu Jan 12, 2023 10:17 pm

Re: Management options - scared

Post by ChaoticBlues »

Anyone who has gone through an ectopic pregnancy with a wanted baby can understand how you feel. It's heartbreaking when you learn your HCG is decreasing but it's also bitter sweet as I personally had the methotrexate and waited 10 week for my HCG to get to 0, in those weeks I had painful contractions, bleeding and fear of rupture. Usually you will be monitored until your hcg is 20 or below. Rupture is still possible with low hcg levels so take it easy. How long it takes depends on how much hcg is in your body and if it continues to decrease. We are all here to support you and we know what youre going through so you are not alone.

Enfys wrote:
Sun Mar 03, 2024 5:51 pm
I’m really grateful for all the resources provided by EPT which have been invaluable in the past week or so.
After years of trying and lots of heartbreak with unsuccessful IVF, we had a naturally conceived pregnancy soon after I had a lap excision surgery for endometriosis.
Sadly last week the joy turned to devastation as I was diagnosed with a tubal ectopic. I’d started with pain and bleeding at 6 weeks. I was admitted to hospital and I had free fluid on the scan as well as a “donut sign” on ultrasound of a left tubal ectopic.
I was about to be taken to surgery. We were really worried as I’ve only just recovered from surgery. But then another consultant offered to see what happened with a repeat HCG and repeat scan. They showed the free fluid (internal bleeding) and HCG were improving a bit so they offered expectant management. They keep offering surgical management and stating the risks of expectant management. I am now home but we feel really that we’re in limbo and could still end up in theatre. My HCG didn’t quite drop the amount desired in 7 days. It’s so hard to make decisions when you’re so heartbroken and just don’t want this to be happening at all. I have repeat bloods and scan tomorrow.
I have been signed off work, but don’t know if it’s going to be enough. How long are people off with expectant management? Do you go back while HCG still not down to normal - it could take weeks couldn’t it?
I don’t know how much I can do activity wise. They’ve said to take it easy and no heavy lifting or sex. I get pain if I walk up hills or walk at a fast pace and bleeding gets worse. How long will my activity be restricted?
I feel really alone. I feel really upset when people talk about it as “the ectopic” or say it’s good that HCG coming down. Rather than that this is a baby we are losing and while the HCG needs to come down for me to be safe, it’s also completely heartbreaking to see.
Thanks again for all you do at EPT

Foreverhopeful
Posts: 4
Joined: Mon Feb 26, 2024 3:03 pm

Re: Management options - scared

Post by Foreverhopeful »

Hey @Enfys, likewise! I’m so sorry you’ve been through this too but it is nice knowing there are people who understand out there! Please also feel free to message whenever ❤️ here for you!

Oh gosh, I’m sorry that it’s so painful for you especially as it’s worse than when you previously had surgery. That must be worrying. I’m in quite a bit of pain too and feeling very bruised today but I dont have anything to compare it to!

Sorry to hear about your wounds 😞 I actually don’t have any dressings on my incisions… It took me a couple of days to build up the confidence to even look at them. My belly button is also a bit of a mess right now 😞 it’s just one huge scab. I have an inie and it’s just full of dried blood (sorry for TMI) so I have no idea what it will look like once it’s fully healed! I hate anyone even touching my belly button so it’s freaking me out that it looks like this and that I can feel the scab 🤣

Hopefully we both heal soon. Thinking of you and anyone else who is going through/has been through this today ❤️

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