Pain after methotrexate

[Humfry848]

Hello all
I was diagnosed with an ectopic pregnancy a few weeks ago after experiencing strange cramps and spotting. My HCG levels were initially at 1816 so the doctor thought it would be best for me to go down the medical route (methotrexate) rather than wait it out. I went in the following day for the medication and after waiting for a few hours to be seen by a doctor, a nurse called me in and said that my HCG levels had actually gone down (to 1700) so they thought they would wait to test my blood 48 hours later in case it was expelling itself on it’s own. I went in 48 hours later for my blood test and had a call the same evening from a nurse to tell me I needed to come in the following day as my HCG levels had gone up to 2900. This was a total shock because I had been told by the nurse that they almost never go up when they start to come down. I went in anyway, had a scan where everything looked to be normal and had the methotrexate. On day 4 HCG had gone up to 3500 which I was told was normal and then on day 7 I’d gone down to 2800 which the hospital thought was enough of a drop that I didn’t need another dose. I had been experiencing some pain and cramping - nothing severe but just mostly discomfort. On the evening of day 7, I started having a lot of pain and discharge so I went into A&E and although they told me everything was normal and my HCG levels had since gone down to 2400, they couldn’t give me a reason for why the pain was coming on. I’m now at day 8 post methotrexate and I’m due for my weekly scan next week. I’m still having weird one sided cramps - I’m still working and walking so I didn’t think it was severe enough for me to worry but I can’t see anywhere that it’s normal to have cramping or bleeding after methotrexate. When I had my scan I was told that it looked like the mass had moved down my fallopian tube so it may be trying to expel itself. I’m so scared of surgery and feel like I’m on edge all the time worrying about a possible rupture but I have no idea what I should be looking out for. I know the pain would likely be severe but I’m so worried that it’s slow acting and I may be missing something but don’t want to keep running back to the hospital everytime I feel off.
I would be so grateful to hear about your experiences on methotrexate and what sort of pains and symptoms would be considered “normal” and when I should consider going into the hospital.

[Lys90]

I have not tried mtx so unfortunately I cannot help you with what is “normal” but I read another story on this forum that a woman’s tube burst 3 weeks after mtx and at 0 hcg, so I would say if in doubt get it checked out. If the health system won’t cover it, it is worth your life and your fertility to get it checked out privately if you can. Seriously, be a bother and be a nag about your health. You have to be your own advocate. Even if there is a “normal” with these things, and I’m not sure there is enough research for that, you could be an outlier. If you worry get it checked out please. Assessing pain levels is really hard, it’s very subjective and how do we really compare ourselves?

At the A&E the other day they asked me to rate my pain and I said 4-5, stabbing pain. But for me 10 is period pain so bad I bite a pillow for hours and want to die. It would take allot for me to rate anything as half of that. If they ask you to rate your pain try to describe it instead, or the degree to which it impacts you “can’t sleep, can’t focus, pain killer doesnt help, stabbing/dull/aching/cramping” etc.

When an ectopic bursts I have heard some women compare it to period pains, to gas, constipation, labour, a boa constrictor around your stomach, some can’t move off the floor, others are walking around. If you worry please get it checked out.

[CamLe]

Hello there,

I am so sorry for what you are going through. I've had the displeasure of experiencing both MTX and surgery for my first and second EP, respectively. I hope that my experience can help ease some of your anxiety, though as Lys said you should 100% be your own advocate and push for more investigations if things are feeling off.

Last Feb I had to receive 2 doses of MTX because my levels didn't decline fast enough after the first shot. In total, I had three experiences of VERY intense pain - the first one tipped me off that something wasn't right with my pregnancy and the following two were some time after each of the MTX injections. The third was sustained enough that I went to hospital to have it checked out and it wasn't rupture. The best they could tell me was that it might be 'the medication working'. I imagine it had to do with the pressure of the mass in my tube. Following and in-between that, I had some more manageable pain. Much of it was on the side of the EP, although while expelling my uterus tissues it was really intense all around and a fair amount of bleeding. I have kept experiencing some pain and twinges on that side ever since, particularly around ovulation and before/during my periods.

All that to say - some pain might be normal and not necessarily a sign of rupture, which I hope can be reassuring. With that said, you should take any severe pain, changes, or intense bleeding seriously and advocate for yourself if you feel you aren't being taken seriously. Having had both experiences now, I feel somewhat grateful having had the surgery that I don't have to feel the anxiety I remember about the possibility of rupture that I remember from the MTX treatment. It's stressful, so please be kind and caring for yourself and take time from work or otherwise if you need it to care for yourself. I'm here and happy to answer any questions or just hear you out if you need. Cam xo

[Humfry848]

Thanks so much Cam and Lys for responding. I’m so sorry for what you’ve had to go through - it does feel like a very long and difficult road that’s made even more difficult by all the unknowns.

I did end up going into hospital yesterday and having a scan. They said it doesn’t look like I have had a rupture and hcg is going down (albeit slower) so we’re going to continue as normal and I’ll be back on Monday for the routine monitoring scan/ blood test. The pain has subsided which is comforting and I’m having some bleeding which is not intense but it definitely is reassuring hearing from you that you had a similar experience with mtx. Luckily my work have been very supportive and I have taken a few days off to rest. Hoping for the best moving forward.

I really really appreciate you taking the time to read and respond. It’s difficult because people around you can never fully understand how you feel as much as they try to support you so it is very comforting knowing that this community exists. So same here, if you ever need to speak or vent, I’m here too x

[CamLe]

Glad to hear you got things checked out and will continue to be monitored, and also that you are taking time for self-care! I agree, this community has been vital for so many of us to connect with people who understand the experience. Feel free to reach out if you have any other concerns, and thank you for being there for me and others as well. I hope you have a restful few days, xo Cam

[Headspace2020]

Hi, I’ve had MTX and felt fine apart from being very tired until my hcg got close to 0 then u started cramping and having period like pains.

I suffer with painful periods and if was more intense than that so wanted to make sure all was ok. I went back to EPAU at this point to check it wasn’t a rupture which it wasn’t.

When researching other peoples experiences it seemed like I was the only one who didn’t have symptoms and was concerned it wasn’t working - some people have symptoms quickly and a lot of pain, some people none at all. Try not to worry we’re all different but the closer you move to 0 you’ll bleed ljke your period although it’s not to be classed as your first cycle.

Good luck i hope you recover well xx

[Jc798429]

I’m so sorry you are going through this

I had methotrexate at HCG 330 the day my EP was diagnosed. I had cramping that felt like period cramps and bleeding at that time. My doctor told me to expect my cramping and bleeding to get worse about a week after the injection. He said to return to ER if I was bleeding through a pad an hour, an increase in abdominal pain and if I was feeling shoulder tip pain. Thankfully none of that happened for me.
I continued to have a bit of spotting off and on and cramping, but on day 18 post methotrexate, my bleeding and cramping increased a bit (and I was having some mild discomfort in my vagina/rectal area when I would sit down) so I went to ER to get checked to be safe. My HCG was 19, and on ultrasound found that my ectopic mass was still present and a hematoma had formed around it, which was likely causing the discomfort.
My HCG returned to 0 about 3 weeks post methotrexate, but I continued to feel the twinges of pain (especially after being more active) on the ectopic side until about 5 weeks post injection.
I go back for another scan at the end of this month in hopes the ectopic mass has been absorbed by my body

If you feel worried at all, don’t be afraid to keep going back to the hospital to be checked. Listen to your instincts!
I hope you’re feeling better soon!

[Humfry848]

Thank you so much ladies. Unfortunately I ended up having a rupture about 4 weeks ago and had to have surgery on the same day. It was such a strange experience as my symptoms were nothing like what I was told to expect. I know everyone’s experiences are different but it was so unsettling to think that had I not had an appointment on that day I might have left it a bit longer to go to the hospital. In case it helps anyone else, I was having gas like pains - sort of felt like a bubble was travelling through my stomach, chest and shoulders and causing intense pressure and more so with movement. I didn’t have any bleeding, nausea, dizziness etc. I had gone to A&E because the pressure woke me up in the middle of the night and they told me my HCG had gone down and blood levels were normal so were comfortable sending me home. Thankfully the next morning I had my weekly MTX hospital visit and they had scheduled in a scan and blood test and immediately saw I had a lot of free fluid in my abdomen. I was so so scared of the possibility of surgery (it was my first one) but thankfully everything went smoothly. I’m now almost 5 weeks past and it’s been a really weird time… on the one hand there’s relief from the constant anxiety and pains and worries and returning to some form of normalcy and on the other hand I’m grieving the loss of a part of my body that I never gave any thought to before this. I have started working again and I will say the uptick in my level of activity did make some of the pain and discomfort come back although nowhere near as severe as before. I finally felt ready to get things back to normal with my partner and we had sex for the first time since my diagnosis last night. I started lightly bleeding today and I thought it was just surface level irritation but it seems to be continuing. I was having cramps this week and thought it might be an indication that my period was coming. Now I’m not sure whether this is my period or we might have disrupted something internally by having sex. I do have a follow up with my GP next week so hopefully that will help clear things up.

I hope you are all doing ok in the circumstances and I’m here if you ever need a chat x