Feeling alone

[Lisalisa]

Hello,

I'm so grateful to have found this organisation and this community online, because this journey can feel extremely isolating.

I just wanted to share my experience and hear from others who've walked or are walking the same path. It's hard to talk about with friends and family, and even my husband doesn't really understand (not that I hold it against him ).

We have a child, who is 2 years old, and have been TTC since January this year. We got pregnant on our honeymoon in February, which was so perfect, and we were over the moon that it happened so quickly.

However, I began spotting daily and at week 6 I went to my GP with concerns over the spotting. He scanned me and found nothing in my uterus, so referred me to a gynecologist. My first HCG test was 8,000 and the second was 9,150 and at 6+5 an ultrasound detected an ectopic with heartbeat.

I was told that I would need surgery, and was referred on the same day, to the hospital. It was all very emotional and shocking and felt like it happened very quickly.

Though the hospital staff were sweet and empathetic, I feel they didn't inform me enough about what was going to happen and they definitely didn't present me with alternative options.

I feel a bit disgruntled from the process as I didn't realise that they were removing my fallopian tube until I was laying on the operating table right before I got anesthesia. I thought that they were going to remove the pregnancy from the tube, but was told by the surgeon that it was too complicated since I would need several follow ups to see the hormone levels reducing.

After the surgery, I accidentally got pregnant 2 cycles later (was told to wait at least 3 cycles), which ended spontaneously at 5 weeks. It was not possible to know where the pregnancy was.

Currently, I am pregnant again with PUL. HCG at 4+5 was 488, then at 5wks was 559, and at 5+2 it was 515. Nothing much has been seen on US but they mentioned that a pregnancy could be growing in the remaining stub of the tube that was removed.

I have to wait 3 days (due to weekend) and have another blood sample and US tomorrow.

I'm hoping that the pregnancy will resolve on its own without the need of drugs or surgery, so that I can move on and determine the functionality of my remaining tube, and possibly go to IVF for assisted reproduction.

I just wanted to share and let people in this community know that I'm here to listen, read, give and receive support and comments. And also that I'm thankful for such good information provided by this organisation. Without this information, I would feel much more lost as I feel the health care providers here have been so vague.

I'd love to hear from you if you've read this post, and I'd you want to share your story, I am here for you. We are not alone in this.

[EPT Host 20]

Dear Lisa,
I am so sorry to hear of your ectopic pregnancy and losses. To experience one loss is difficult, dealing with multiple losses is heartbreaking and my heart truly goes out to you.
These boards are a safe space to share, ask questions, or to vent. They are filled with people who have been through similar experiences and journeys, and we are here for you for as long as you need.
Many women experience feelings of isolation after an ectopic pregnancy - I did, too. It is a frightening experience. Like you, I reached out to the Trust for support and I will be here for you to lean on for as long as you need.
We at the Trust believe that talking through what happened and your emotions as and when you can helps the healing process. As well as these boards, we operate a helpline service and there's no pressure whatsoever but if you would ever like the opportunity to speak over the phone to someone who has been through a similar experience, do feel free to call, details are below. We can take things at your pace entirely and you are free to ask any questions that are on your mind. You can talk about the ordeal you have been through and express your feelings to vent and let off some steam. We can exchange emails too, if you prefer that route. We'll simply be here for you, however you wish and for as long as you wish.

Above all be kind to yourself and allow time to grieve and heal both physically and emotionally,
Sending much love and warm hugs,
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
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Further information is available on our website.
Email us: ept@ectopic.org.uk
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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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[CamLe]

Hi Lisa,

I'm so sorry for all you have been through, it sounds like a lot. Have you found out more about your current situation since posting?

I got pregnant last Jan on my forst month TTC. At week 7, I found out it was ectopic after being woken up by violent cramps and nearly passing out. I ended up needing 2 doses of mtx and was completely out of energy and in pretty consistent pain for 1.5-2months until I got back to 0 HCG. Since then I've decided I was still lucky not needing the surgery and tried to move on, but I'm finding that I'm not done dealing with the grief and trauma of it all. It's a longer process than I anticipated, but I think I'm slowly working through it...

Take care,
Cam

[Lisalisa]

Hi Cam,

Thank you for posting a reply.

I'm really sorry to hear what you've been through. It sounds really hard to have gone through all that pain before and after MTX, and the loss.

I can understand what you mean about it taking a while to for the grief and trauma to be over. I feel similarly, with having what feels like a very traumatic year with TTC and losing 3 pregnancies.

Are you TTC again? I'm only asking because I wish I had thought about testing the function of my remaining tube before (eventually unsuccessfully) TTC again after the first ectopic.

The result from my last pregnancy was, again, ectopic, and I decided to have my second tube removed. This time it was just a gestational sac so they offered me MTX or surgery. I decided on surgery since I no longer believed that my tubes functioned as they should have to conceive normally, and we are going to do IVF in January.

I actually wish that I had thought about doing and HSU or HSG sooner and moved into IVF sooner, but I never came to think about it.

Anyway, I wish you the best with TTC and I hope you can overcome the grief and trauma. I actually spoke with some of my closest girlfriends about what's happened, and as it turns out, others that I know have experienced ectopic pregnancies too. And if not ectopic, they have been able to relate to a loss of pregnancy in one way or another. It's sad, and hard, but it helps me that my friends understand the pain, shock, and grief that comes along with such a loss. It helps me feel very much less alone.

I'm moving forward now, and hoping for the best with IVF.

Regards,
Lisa

[CamLe]

Hello Lisa,

I am so sorry for your losses. I am glad to hear that you are getting good support from your friends in dealing with the grief and trauma. I hope IVF will prove to be successful for you - you deserve the best. There's always so much we think of in hindsight, but hopefully that will work for you now and I'm sorry you had to experience this awful ectopic experience twice, in addition to another loss.

I actually just posted my latest updates in another thread (a bit long to include here). I found out I was pregnant a few days after writing you. I guess it had been on my mind because my cycle had been weird already. Unfortunately, mine was also diagnosed ectopic for a second time on the same side, so this time I got surgery. Now, in hindsight, I wish I had just removed the tube then or had more testing done before TTC, though as I recall I don't think there are great ways to test for that. I feel foolish almost for trying again, but at the same time after my first doctors had said it was probably random bad luck because I checked no boxes for risk factors. This time they went straight to talking about how I was at higher risk because of my history, which felt like they were telling me something different then the previous time. At least for now I don't have to worry about rupture since it's gone.

Take care,
Cam

[Lisalisa]

Hi Cam,

I just read your post on the other thread and I'm so sorry you had to go through all that. And I'm sorry for your loss.

I understand the relief you must feel about "getting rid" of the tube, in a way. I feel the same about moving on without any tubes, and glad the risk of it happening is minimised by a lot.

And you're right about looking back on what has happened. It's stressful to go through something like we have, so it's hard to get a 100% overview, and we also depend so much on our healthcare providers.

I was thinking that an HSG or an HSU could help detect if there's a blockage in the remaining tube- but I'm not sure, I never asked.

I wish you a good recovery and all the best for moving forward from all this.

[Mat_alog]

Hello !
Really sorry to hear that you had to go through all this.
I had my tube removed on the 10th of October after my second ectopic pregnancies(the first one passed by expectant management). And If I can "reassure" you, I had done an hycosy scan after my first ectopic which shows that the tubes were normal whereas the EPU told me that it was almost 100% sure if I was doing a new ectopic on the same side that the tube was damaged. The hycosy or hsg only show blockage but cannot show you microscopic damage. As you said, really not worth looking back and wondering what should have been done (easier said than done ) but I thought I would share. Hope that helps.

[Lisalisa]

Hi Mat
I hope you're feeling better and recovering well from your salpingectomy.

Thanks for sharing about the HSU, I guess I would have always wondered, even if I can't changed the past. It does help to hear that there might not have been anything I could have done differently anyways.

My surgery was on Oct 3 and I've been starting to feel better. Working almost full time again, since mid last week, and just really want my period to return and things to go back to normal! Still quite tired some days though.

[Mat_alog]

It will get better gradually... I was back at work this week as well and finishing the week exhausted. But it still felt nice to get a sense of "normality" back in my life.

[Lisalisa]

I understand that feeling of wanting a sense of normal again. I got my period today which I'm glad for as it's a step forward and a sign of normality.