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My Ectopic Story.

This is a welcoming place for you to ask your questions and share your knowledge and experiences of ectopic pregnancy.
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wishful
Posts: 7
Joined: Sun Apr 21, 2019 10:07 pm

My Ectopic Story.

Post by wishful »

My Ectopic Pregnancy Story:

Sharing my ectopic pregnancy experience, hoping it will help someone in the same situation as me. The entire process was scary, exhausting and drained me physically and emotionally. But now that it is finally over, I feel a sense of relief and more thankful to everyday of my life, and every little thing in my life.

My ectopic pregnancy - It all started with a period like bleeding and a positive pregnancy test.

I had a period like bleeding that started around the time my periods were due (around 13 DPO). (I know when I ovulate because we are actively trying to conceive and tracking ovulation using combination of BBT, Cervical fluid monitoring, LH Surge test kits and ovulation pain in the ovary.)

Even though this bleeding arrived at the time I expected my periods, as I recollect it now, it was unusual as compared to my regular periods – It was watery, had clots and tissues, no cramps or any pain at all. The overall flow was only 2/3rd to what I used to have during my regular periods.

So, I thought my periods just started and yet, I took a pregnancy test, just in case (I never did that in my past cycles.) That should be a divine intervention. In hindsight, that is the best thing I did to myself, because that is what saved me with minimal medical intervention! Otherwise, given the nature of ectopic pregnancies in general, I would not have known until it became a serious emergency situation. The HPT was faint but surely positive. I could not believe my eyes because this is my only positive HPT in a natural cycle ever. I was confused and cautiously optimistic.

Luckily, I was able to see my GP same day. The Urine test at the GP was negative. But, since I showed the picture of my HPT, he booked me for a Beta HCG blood test, to have my levels checked. Four days later, the Beta HCG test came back at 111 and the GP referred me to the EPU.

My Beta HCG levels and the sequence of events are as follows:

Feb 22 – Faint Positive HPT and period like bleeding
Feb 26 – 111 - Blood test at GP.
Mar 01 – 340 – Referred to EPU. No evidence of pregnancy in scan.
Mar 03 – 574
Mar 05 – 532 - Possible left ectopic pregnancy in scan. Since the levels were falling, Expectant management was recommended.

Mar 08 – 1104 (Day 1 MTH) – Since levels doubled since last test, I was called in urgently. Another scan confirmed left ectopic pregnancy and ruled out Heterotopic pregnancy. Methotrexate shot was given immediately.

Mar 11 – 522 (Day 4 MTH) levels fell 50%. Great relief.

Mar 14 to Mar 16 – 1st bleeding after MTH

Mar 14 – 673 (Day 7 MTH) levels increased again. Worried very much. If levels do not fall in next blood test, 2nd dose of MTH needs to be given.

Mar 16 – 483 (Day 9 MTH) thankfully levels fell again so no 2nd dose of MTH.

Mar 24 to Mar 28 – 2nd bleeding after MTH. Some cramps, tiny clots, no tissues.

Mar 25 – 183 (Day 18 MTH)

Apr 02 – 40 (Day 26 MTH)

Apr 16 – 1 (Day 40 MTH) Ectopic resolved.

TOTAL DAYS FOR ECTOPIC RESOLUTION POST MTH SHOT: 40 days

PAIN:
-------

I did not have any pain or discomfort before MTH. However, after MTH shot, I had pain from severe to moderate intensity, but the pain got less severe and less frequent after the HCG value fell under 100.
Various types of pain –
Ectopic site pain - periodic, persistent pinching in ectopic site. Even had this pain few days before the value was 1. Ectopic site felt like raw unhealed wound when stretching.
Ovary pain – Both sides
Lower pubic area pain on the side of ectopic - persistent pin prick kind of pain
Upper abdomen pain – both sides, more on non-ectopic right side.


DIET
------

When my HCG levels fell 50 % on D4 after MTH, I was so relieved and started eating well in order to reward myself and feel normal again. But the value went up on D7 and only at that point, after going thru various posts in forums and other reliable sites, I understood I need to cut back on folic acid rich foods. I still wonder why my EPU did not advise me so. I cut back on all folic acid foods, basically lived on Chicken and Milk. It was really really difficult to manage with such a poorly balanced diet; I was getting weaker but could not eat healthy. But I really think it helped, because my levels started falling steadily after that change in diet.

CONSTIPATION
---------------------
As a result of my poor diet, I got severe constipation and could not pass stool for about 4 days continuously. I was not able to push hard because it hurt my ectopic site and I was way too scared of rupture or internal bleeding. At that point, Prune juice and Prune fruits saved me.

BBT
----
The days between HCG blood draws are horrible. Nothing could help settle my anxious mind, especially during the initial days when I was not sure if the ectopic was resolving or not. HPT was not of any help, because it will always be positive during initial days and will not help understand if HCG is falling or not. What gave me some comfort and reduced my anxiety was BBT charting. I still continued BBT charting and the fall in BBT trend (which indicated fall in progesterone) was in sync in HCG fall trend in blood test. And it was satisfying to see the BBT fall down consistently, which meant the pregnancy was getting weaker.

EMOTIONAL
---------------
As rightly mentioned in some webpage, ectopic pregnancy feels like a ticking time bomb in the tummy. I felt like that every passing minute for 40 days. Every move scared me. I was paranoid about every little pain in the tummy. The numerous blood draws left me drained and exhausted. After the morning blood draws, the nurse calls me back with results by afternoon, that in-between wait used to kill me. My heart used to race harder for every little beep from the phone. I could not focus on anything else and just sit near the phone waiting for it to ring.

Knowing that I had a much-wanted healthy pregnancy, but in the wrong place, then wishing for the pregnancy to resolve by itself (expectant management), when that did not happen, terminating that pregnancy with MTH (medical management), and praying every day that that pregnancy will resolve soon, while also praying that I should come out of all this alive because I have a family to look after. The entire ordeal was an emotional roller coaster of flooding emotions and intense feelings.

If someone ask me what separates life and death – I would say a few centimetres, because that is what decided the fate of my beautiful baby.

LESSONS LEARNT:
----------------------------
1) I took a pregnancy test even when my period started, it helped me with quick diagnosis of my ectopic pregnancy.
2) The urine pregnancy test at the GP is low sensitivity and unreliable during very early pregnancy days, in situations like mine.
3) As suggested by many people and reliable websites, it is good to cut back on folate rich foods and any other supplements so that MTH works efficiently.
4) I did not have any pain or discomfort even when my HCG levels where at the highest at 1100. So, pain is not a reliable indicator for diagnosis of ectopic pregnancy, at least for me it wasn't
5) Lots of sleep (night + day) made me feel a lot better and it helped with my recovery.


My thoughts and prayers are with everyone going thru this.. Wish you lots of strength… Remember, “This too shall pass away”

EPT Host 20
Posts: 2022
Joined: Thu May 31, 2012 9:58 pm

Re: My Ectopic Story.

Post by EPT Host 20 »

Dear wishful,
I am so sorry to hear of your ectopic pregnancy and loss but thank you for taking the time to write such a detailed account, it really will provide support to so many other ladies experiencing ectopic pregnancy.

Please be kind to yourself and allow time to grieve, to heal both physically and emotionally.
We will be here for you for as long as you need.

Sending much love and warm hugs,
Karen x

The Ectopic Pregnancy Trust
Registered Charity Number: 1071811

**************************************************************************
If we have been able to help you, are you able to help us with a small donation or by volunteering or fundraising?
Further information is available at ectopic.org.uk
Email us: ept@ectopic.org.uk
We provide a call-back helpline service: 020 7733 2653
The latest EPT newsletter is out now! You can take a look at the Winter edition and subscribe to our mailing list here: https://mailchi.mp/986bdd6091ee/ectopic-matters
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
***************************************************************************

Mariia
Posts: 3
Joined: Tue Jul 16, 2019 10:41 am

Re: My Ectopic Story.

Post by Mariia »

Thank you for you detailed experience post, it is so supportive for me at the moment, when I'm in two hours since left the hospital where I was about to take a mtx shot and asked my doc to give me another 3 days for next blood test to see where my hormone levels (which are plateuining 236-294 last 10 days) will go.
Thank you ❤️

wishful
Posts: 7
Joined: Sun Apr 21, 2019 10:07 pm

Re: My Ectopic Story.

Post by wishful »

UPDATE: I am currently pregnant about 11 months post the ectopic without much diffculty, and we only started trying roughly 10 months post the ectopic, we wanted to give maximum time possible so as to give time for my body to heal. I continued to get mid cycle bleed and twinges in the affected tube every cycle post recovery. I felt the wound was raw and it dint really heal much longer.

Also after i got pregnant, they could only confirm around 6 weeks if the pregnancy was in the right place. I should say i was scared as [heck], because i had twinges, dull pains in the same tube. I was almost convinced it was another, and wasnt ready to face it.. thankfully it wasnt. .

I am posting so that it gives hope to people like me trying to get pregnant post ectopic. My prayers to anyone who is going thru tough time..

EPT Host 20
Posts: 2022
Joined: Thu May 31, 2012 9:58 pm

Re: My Ectopic Story.

Post by EPT Host 20 »

Dear Wishful,
Congratulations on your pregnancy and thank you so much for taking the time to post on the forum and give hope to so many.
Sending much love and warm hugs,
Karen x

The Ectopic Pregnancy Trust
Registered Charity Number: 1071811
Ectopic pregnancy patient information suite: Highly Commended in the 2019 BMA Patient Information Awards
**************************************************************************
During the coronavirus outbreak, The EPT team is still working hard to provide crucial information and support to women and families experiencing ectopic pregnancy as quickly and efficiently as we can.
If we have been able to help you, are you able to help us with a small donation or by volunteering or fundraising?
Further information is available at ectopic.org.uk
Email us: ept@ectopic.org.uk
We provide a call-back helpline service: 020 7733 2653
Take a look at our newsletters and subscribe to our mailing list here: https://mailchi.mp/986bdd6091ee/ectopic-matters
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
***************************************************************************

Jen1111
Posts: 13
Joined: Thu Aug 27, 2020 2:45 pm

Re: My Ectopic Story.

Post by Jen1111 »

Dear wishful, congratulations on your pregnancy and so sorry to hear about the awful time you went through with the ectopic.
I found it very interesting what you said about having twinges in the tube of your ectopic. I was diagnosed with an ectopic pregnancy in March this year (although it took an entire month of positive pregnancy tests and bleeding for the doctors to finally scan me!). It took about 10 weeks from initial bleeding to resolve to an HCG of zero using expectant management, which felt like an entire lifetime and it was the most emotionally exhausting thing I have had to go through. So obviously it’s now August (6 months since ectopic) and I have had a very early miscarriage (5.5 weeks) at the start of this month, but I still have a weird twinge down my right side (the same side as the ectopic). I am totally convinced that something isn’t quite right (and possibly causing my miscarriage) but my doctor says it’s inflammation and my miscarriage was bad luck. Did you continue to have pains for the entire time after (and do you have them now?). The internet seems to be full of stories about pain after surgery but not much when the tube was left in tact. I’m just so frustrated with everything! xxx

wishful
Posts: 7
Joined: Sun Apr 21, 2019 10:07 pm

Re: My Ectopic Story.

Post by wishful »

Hi Jen1111,

I am sorry abt the delay in responding.

Yes I did have the twinges, raw wound like pain in the ectopic side and spotting mid cycle for many cycles after the ectopic was resolved.

When I got pregnant 10 months after the resolved ectopic, I had severe pains in the ectopic tube that I was convinced it was another ectopic. I had to wait until 6 weeks to get it confirmed that it was not by a scan, I would say the discomfort was the worst at 5 weeks, and I was too scared because of the delay. But fortunately it was not another one.

I hope it helps. I wish you all the best.

Jen1111
Posts: 13
Joined: Thu Aug 27, 2020 2:45 pm

Re: My Ectopic Story.

Post by Jen1111 »

Dear wishful, thank you so much for you reply. It’s really helpful - I’m going out of my mind wondering why I have this odd pain 6 months on, and wondering whether it is something that is causing me to have an ectopic and an early miscarriage.

Congratulations on your pregnancy! I hope it’s all going well. These stories give me hope, when I’m feeling a bit hopeless. Thanks again xxx

2020Lady
Posts: 3
Joined: Wed Jul 08, 2020 7:24 pm

Re: My Ectopic Story.

Post by 2020Lady »

Hello Wishful,

Thank you so much for sharing your story, I am so sorry for your loss but I am so happy to hear you are now pregnant.
I sadly had an ectopic pregnancy not so long ago and still experience the raw twinge like pains you have described and it is really worrying me but hearing your story has helped put my mind at rest a little.

This forum has been such a pillar of strength for me this last couple of months. I don’t like discussing anything out loud to people as it feels like I am reliving everything again, I know it sounds silly but I feel like I can cope if I am not speaking about it, so being able to come on here and read others posts like yours really helps me.

Thank you again x

Jen1111
Posts: 13
Joined: Thu Aug 27, 2020 2:45 pm

Re: My Ectopic Story.

Post by Jen1111 »

Hi 2020Lady, I’m so sorry you’re going through such a rough time. It’s so helpful to hear of other people who are going through something similar. Can I ask, did you go through expectant management/methotrexate with your ectopic, or did you have surgery? I can find lots of info online about pain after surgery to remove a tube (which I can understand) but not lots of info after expectant management. It would be interesting to know whether experiencing pain and twinges is normal after expectant management because I’m just so worried that something is wrong with me (although this forum has put my mind at ease a little). Thanks so much xxx

Crumje_nb2020
Posts: 1
Joined: Sun Aug 09, 2020 7:36 pm

Re: My Ectopic Story.

Post by Crumje_nb2020 »

Really good post Wishful and great detail. I also think that the EPC should advise re non folic acid diet and I found green tea really good it apparently stops the body from obtaining any folic acid from foods I Frank's loads of it and got my HCG down quite quickly. Lack of information really is the issue. I am currently getting pain on side of ectopic during ovulation but hearing your positive story is giving me hope. Congratulations on your new pregnancy and all the best.

wishful
Posts: 7
Joined: Sun Apr 21, 2019 10:07 pm

Re: My Ectopic Story.

Post by wishful »

Thank you all, I am glad my experience is of some help. This is the least I could do, for all the help and comfort I got from this forum during one of the most trying times of my life. I felt so lonely, and could not share my situation with anyone I know. With out this forum I would have felt lost. Appreciate every bit of help from the volunteers who run this forum and the users.

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