Any advice on making the long wait and recovery after methotrexate easier

[Lexi92]

Hello

I am currently day 5 post first dose of methotrexate. Now the worry of the regular blood tests and treatment is less, the sadness and emotions are coming out.

I understand recovery is going to be weeks and months. After losing a pregnancy (with this ectopic and previous miscarriage) it makes me want to try to conceive even more. I understand the reason why we have to wait and it is important for health reasons, and we will wait for the recommended time period; but the days are long and the next couple of months seem a long way off. Does anyone have any advice about how to get through the next couple of months?

Thanks for reading.

[ChaoticBlues]

Hey,

I had the methotrexate at 8 weeks pregnant and it took 10 weeks for hcg to get to 0. It was hard, very hard, I think mainly because of the cramping pain that came every 2 days. If the docs say you can take paracetamol combined with codeine, take it. The bleeding was consistent, then near the end there was uncontrollable bleeding, for about an hour, also loads of clots.

I would say the hcg decrease was in halves every week, so like one week it was 300, the next 150, the next 75, it was very drawn out.

Any advice to get through it? I would say just focus on the idea that it will end and you will have your body back.

[Lexi92]

Hello ChaoticBlues

I'm sorry for your loss and thank you for sharing your experience. My pain management is good at the moment, it was helpful to know about how long it took for your bhcg to decrease. Thanks for the advice, I think where I'm still at the beginning of recovery and things are quite raw, it's good to have a different perspective and share others experiences, as its comforting and less isolating. I hope your recovery is going in a positive direction.

[CamLe]

Hi Lexi,

So sorry for what tou are going through and your two losses . I had an EP treated with MXT last winter and for me it took 1.5 months to get back to 0 HCG. I also felt that the wait seemed incredibly long and remember reading someone who suggested that while the wait might feel really drawn out, most women will manage to go on to have a healthy pregnancy. The woman had suggested thinking of this time as precious time to spend just with your partner before starting a family.

I remember this being put a lot more eloquentely than what I wrote there, but what I'm trying to say is that I took comfort in trying to enjoy the good things and people around me during that wait. In no way do I mean minimizing the pain, which is important to acknowledge and so valid, but simply that shifting focus from seeing a three months count down to enjoying the good moments you can found in that space had really helped me.

The other thing I'd say is that I really tried to 'decide' that I was done with the emotional recovery when I reached 0 HCG because I wanted to be, but obviously that's not how it works. I ended up dragging a lot of emotional bagage around because I tried to avoid it for a while. What I learned from my experience was also the need to make space for emotions as much as I can and when I can because they have a way to find you when you try to avoid them!

Take care ans be kind to yourself - this is really hard! Im here (and many others!) if you feel like chatting some more. Cam xo

[Lexi92]

Hello Cam

I'm really sorry for your loss last winter and thank you for sharing your experience. I'm a planner and like to know what might happen so its good to know that the bhcg can take a while to decrease.
I understand your point about shifting focus and hadn't thought about it like that before, which has brought some positivity to the situation.

I can see completely where your coming from about deciding your emotional recovery was done (sometimes I feel like I want this part of my life to be done and just move forward, almost like boxing it up). Emotions are unpredictable and powerful and I'm sorry you had a difficult time, it's hard to know how to feel about this kind of experience and I think that's OK as everyone is different; you are right it's really hard. My experience started on 1st November and only now are my emotions really coming out and I'm also finding they can be quite fluid which is a rollercoaster. How are you doing now?

[CamLe]

Hey Lexi,

I can totally relate with the rollercoaster and the emotions coming out a bit later. It feels like when there's too much going on physically our minds push the emotions aside to come out as soon as we feel physically better..

I have been doing better with time and with acknowledging my emotions more. That being said, for me the next pregnancy after my ectopic also turned out to be ectopic, so I had a salpingectomy late Oct that added a whole new layer to my healing process. If anything, I did feel better equipped this time with knowledge about EPs, this website + forum, and my learnings from the last experience. So I've been trying a more gentle recovery that leaves more space for my emotions.

How are things feeling for you now? I remember a similar feeling of frustration with the unpredictability of healing after MTX.

Cam

[petroben]

Hello,

I'm truly sorry to hear about the challenges you're facing. Dealing with loss and waiting for the next steps can be incredibly difficult. It's important to give yourself time to grieve and process your emotions. Connecting with a support network, whether it's friends, family, or a support group, can provide comfort and understanding during this time. Engaging in activities you enjoy, practicing self-care, and focusing on your overall well-being can also help make the waiting period more manageable. If needed, consider seeking professional support to navigate through these emotions. Take things one day at a time, and know that there are people who care and are there for you.

Sending positive thoughts your way,
[petroben]

[Lexi92]

Camle - I'm so sorry you had another loss and had to have surgery. I'm pleased your recovery this time has been more gentle, that must have been really tough, im glad you felt more informed and had some tools already you know you could use to help.

I had about 3 days last week where I just felt very sad and now I'm just calm. Just taking each day as it comes whether bad or good. That to be said, I had my day 7 bloods back and they have only dropped by 12% not 15%, the nurses want to do a watch and wait and see where my bloods are at this week as my symptoms are manageable and unchanged. Another spanner in the works, and i got quite anxious initially but have calmed down now, i cant control my bhcg dropping, this journey is just so unpredictable.

Petroben- Thank you for your reply and positivity much appreciated. I am lucky I have a good support network of my family around me and I have taken up my work offer of free counselling (which I have never done before). You are definitely right it is good to talk to someone, with my first miscarriage I felt it was a "taboo" subject and only told close family. Since having that experience and having others share their stories, I now know this time round I feel more confident to talk about it, be kinder to myself and not be ashamed.

[CamLe]

Hi Lexi,

Thank you - definitely more than I bargained for, but I guess there's a lot to learn from adversity. I've been back at work for a week and it is nice to get back to more normal thoughts and activities, but I still find that sadness comes up fairly often for me. I guess that will pass in time.

So glad to hear you found some calm amidst it all. All emotions are ok and need their space, but it's great to enjoy those quiet moments when they come! I'm so sorry to hear about your levels not dropping fast enough. I remember how stressful that could be. My levels had dropped only by 13% at day 7 last winter and they gave me no choice but to get a second injection the next day (I'm in Canada, maybe a bit of a different protocol?). It's hard to know how much the additional dose impacted my recovery, but I also remember that the added uncertainty of it alone added to the burden. Glad your anxiety went down, though don't hesitate to reach out if you need support or just to vent.

Keep me posted on what your nurses decide and be gentle with yourself, you deserve lots of kindness through those hard times!

Xo, Cam

[Lexi92]

Hello CamLe

Well done for going back to work, that's a whole different environment and after recovering at home must have been a big change. How did you feel? How's it going? Hopefully your colleagues were ok and didnt ask too many questions. I get what you mean about normal thoughts and activities, shifting focus abit.
I get where your coming from about sadness cropping up alot, after I had my miscarriage sometimes something small at work would trigger my sadness which could be completely unexpected. There was also someone who had a due date the week after we were meant to be due. I had to distance myself from her initially and she understood, but over time it got better. Does it feel good to get back into a routine? Well done .

[Coulditbelupus]

This is all really nice to read, particularly to hear people going through this at the same time.

I had a 'complete tubal abortion' 5 weeks ago, where the pregnancy fell out of my tube into my abdomen. I've now had 2 operations (the second one because they thought I was bleeding), and after lingering hCG levels I am now 10 days post-methotrexate.

Feeling totally wiped out and nauseated from the medication, while also recovering from operations 2 and 4 weeks ago. I totally agree with you all, I feel I need to be getting work done again because I'm 5 weeks into this process now, but I'm also completely physically drained from all of it.

Trying to take some time to be sad when needed, and the rest of my time booking a nice holiday for February when this should all be over x

[Coulditbelupus]

Following that, is anyone else back working a physical job quite soon after treatment? I'm a hospital doctor and my colleagues think I'm mad. I've been back at work for 1 shift at 7 days post-op, and then 2 weeks post-op the next time, and 1 week post-methotrexate. I'm a lower risk of pain/bleeding etc than most people because I know my pregnancy has already been removed and there's just a small bit of tissue left.
I feel like I've spent enough time doing the initial mourning and sadness, and I know it will come in waves in the coming months. I have counselling for other health issues so I've had extra sessions to talk about this new medical trauma.
I feel very drained so only doing occasional shifts, but I think there comes a point where I've just got to get back to normality? Does anyone else feel like this, or wish they'd behaved differently and taken it slower when it happened to them?

[CamLe]

Hello Lexi and Coulditbelupus,

Thanks Lexi for the kind words and encouragements. My colleagues were very nice about my return to work and didn't ask any questions about my absence, just that they were happy to see me. Routine has been nice, though I do sometimes struggle feeling down or tired - I guess that's normal! How about you? How is your recovery going? Did you end up needing another shot of MTX or are your hormones down?

Coulditbelupus, I'm so sorry for what you're going through. I've had MTX and surgery on separate EPs and I can't imagine having to go through all of it at once.. I totally appreciate your desire to go back to doing things and I can relate to the struggle with energy. For me, after MTX (I ended up needing two injections), it took about 1.5 months for my energy to climb back up. I have an office job and doctors didn't even mention the possibility of taking sick time, so I really only took most of the first week, during I had lots of bleeding. But I was so tired that I ended up working part time for 1.5 month because I wasn't able to get through full days. My learning from my first EP was that I should have taken more time, that I wasn't well informed on the impact MTX could have on me for many weeks and it took me a long time to recover my energy. That's why I took three weeks post surgery for my 2nd EP, to make sure I rested better before going back in. I hope this helps! Working a few shifts seems like a good idea if you can maintain it for a while and it works with your energy levels. Keep us informed on how you're doing!

Cam

[Lexi92]

Hello

Coulditbelupus - welcome to the chat. I'm so sorry for your loss and you have had to have almost a triple treatment, must have been so hard. I have good days and bad days with symptoms, mainly a dull ache and tiredness. This week I have felt very frustrated about having to rest at home and limited tasks of my normal routine, from what seems to be the never ending risk of rupture. Yes, I think its a fine balance, how long do you take off of work for something like this? but not look like you are taking advantage of your work. Like you, I have quite a physical job so don't want to push it to soon and end up in surgery, but I dont know how long I can rest at home as it gives you alot of thinking time. Does your work do a phased return where you gradually increase your hours back up to full time? Might help with routine but not overwhelm you, if your in the uk, speak to the occy health dept, they are very good. Holiday sounds nice where are you looking to go?

Camle - I'm so pleased your colleagues were really nice makes such a difference to go back to a positive environment. I had some good news, im d13 today and my bhcg has dropped from (d7)1100 to 700 which they are happy with and much more reassuring. Although in the next breath they say I'm still at risk of rupture until 21 or below, so not out of the woods yet :This is the part I struggle with I feel like rupture is always at the back of my mind and don't want to get complacent.

[Lexi92]

Hello

Coulditbelupus - welcome to the chat. I'm so sorry for your loss and you have had to have almost a triple treatment, must have been so hard. I have good days and bad days with symptoms, mainly a dull ache and tiredness. This week I have felt very frustrated about having to rest at home and limited tasks of my normal routine, from what seems to be the never ending risk of rupture. Yes, I think its a fine balance, how long do you take off of work for something like this? but not look like you are taking advantage of your work. Like you, I have quite a physical job so don't want to push it to soon and end up in surgery, but I dont know how long I can rest at home as it gives you alot of thinking time. Does your work do a phased return where you gradually increase your hours back up to full time? Might help with routine but not overwhelm you, if your in the uk, speak to the occy health dept, they are very good. Holiday sounds nice where are you looking to go?

Camle - I'm so pleased your colleagues were really nice makes such a difference to go back to a positive environment. I had some good news, im d13 today and my bhcg has dropped from (d7)1100 to 700 which they are happy with and much more reassuring. Although in the next breath they say I'm still at risk of rupture until 21 or below, so not out of the woods yet :This is the part I struggle with I feel like rupture is always at the back of my mind and don't want to get complacent.

[CamLe]

Hey Lexi,

Thanks for the update. Nice to hear that your levels dropped and the doctors are happy! I totally remember the anxiety you describe - I'm really sorry you have to carry that load around with you. Here in Canada doctors weren't as concerned about exercising at lower HCG levels, but I did carry that constant worry about rupture around until are was down near 0. I still find that pain in that area of my body since had been triggering a higher than normal fear response some months after.. I do believe that risks go down progressively so hopefully the worry will alleviate. Do you have a good network of people to help distract you when you need it?

Take care! Coulditbelupus, I hope you, too, are doing as good as can be.

Xo Cam

[petroben]

Hello,

I'm truly sorry to hear about the challenges you're facing. Dealing with loss and waiting for the next steps can be incredibly difficult. It's important to give yourself time to grieve and process your emotions. Connecting with a support network, whether it's friends, family, or a support group, can provide comfort and understanding during this time. Engaging in activities you enjoy, practicing self-care, and focusing on your overall well-being can also help make the waiting period more manageable. If needed, consider seeking professional support to navigate through these emotions. Take things one day at a time, and know that there are people who care and are there for you.

Sending positive thoughts your way,
[petroben]

Kyle

[petroben]

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