Expectant management pregnancy unknown location

Main Board
1

I’m currently on a horrible rollercoaster of not knowing what is going on with my body or how much I’m at risk. I feel like a ticking time bomb. After 10 days of blood tests and scans and very poor communication from a number of people at the EPU I’m still in limbo with a pregnancy of unknown location. I have very few symptoms - a bit of discomfort in my lower abdomen but no real pain, previous heavy bleeding for 1 day that has now slowed right down and that’s it really. My hcg is bobbing up and down between 345 and 460 - I’ve had 5 blood tests now. I’ve had two internal scans which are completely clear. I’ve seen a consultant and the plan is to wait til Thurs to repeat the hcg and scan and it sounds like they may offer methotrexate if things are still the same. I just don’t know what to expect as there are all these different possibilities and outcomes and noone can really advise what is likely to happen. I understand the difficulty with the diagnosis and the need to avoid invasive surgery if it’s not necessary but I just feel that they’re waiting for something awful to happen. I want to put my faith in the medics and believe they know what they’re doing and wouldn’t put me at risk but at the same time I read lots of stories of people having a clear scan and then going on to have a ruptured tube etc.

It feels like such a long wait and even on Thurs it may still be far from over. :cry:

I’m not even sure whether I have a question to ask but I guess it’s whether there is anyone who’s had a similar experience?

Thanks all and sorry that we are all here in the words of circumstances x

2

Dear Katiep65,

I am so sorry to hear of the difficult time you are going through.

If scans are inconclusive, doctors would carry out a series of blood tests to check hCG levels to see if the numbers are rising as expected. However, in isolation, hCG tests only provide a part of the picture - declining levels indicate that a pregnancy has ended and will be miscarried. It can also possibly indicate an ectopic pregnancy that is “self-resolving”. Also hCG levels rising by less than 66% over 48 hours means it is likely (but not certain) that it is ectopic. If levels rise normally, they suggest the pregnancy is implanted in the uterus. You may see from this that hCG levels only indicate certain possibilities and are not in themselves a definitive guide. A positive identification of an implanted embryo on a scan is usually needed before a final diagnosis/certainty that the pregnancy has implanted in the uterus. This is possibly the reason why your doctors are waiting until your appointment to carry out scans and tests.

Having said this, I do think that if you feel pain which seems unusual and is concerning you and, in particular, if you experience any bleeding or spotting, it is better to get checked out to be on the safe side.

I really do understand how you feel, I had a wait before my ectopic pregnancy was diagnosed too. Take things easy, avoid any heavy lifting or strenuous exercise and I hope you get some answers soon.

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

3

Hey, I had this in October last year. I wish I’d known that it can go up and down for a while - I always believed it would go down eventually in the early days and so was disappointed.

Expectant management winds you tighter and tighter anxiety wise. I had it for 7 weeks (end of Oct, discharged 5th December).

I never got a big bleed, no peak event but I did get stop start bleeding to heavier bleeding in that time. But the heavy never lasted long and was not heavy in the grand scheme of things - just in comparison to spotting.

Don’t panic if you pass tissue (also don’t assume like I did that that meant my hcg would suddenly go down consistently!) when the lining of the womb is no longer necessary you can shed it as a piece of tissue. I thought this meant it was over (bc initially they didn’t know if it was ectopic or miscarriage as I too was PUL).

Of course take in all the info but remember most info online seems to focus on surgery and Methotrexate, it’s so hard to find other expectant management-ers!

It can really work and I’m grateful (now) I didn’t need treatment. But by the end (mine was apparently exceptionally long to resolve) I was begging for a surgery for it to be OVER.

You’re gonna be okay X

4

Oh and use the helpline if needed - I did twice and they were flipping amazing.

When it’s over, that’s often when the floods of mixed emotions come, at the moment the world is scans tests and hcg and this dread of Danger.

Of course it’s something to be taken very seriously. But remember expectant management IS used successfully. I would freak out googling bc there was limited online info, everyone on boards outside of here is on Methotrexate or surgery.

Also - if you do end up searching online, do bare in mind in the states they have a very different protocol with Methotrexate and surgery often being used with much lower hcg. This can make you think why am I not getting help?! … it’s different protocol.

Get out a Netflix boxset, don’t take any prenatal vitamins (or things with folic acid in), take it easy. It can take a while but you can get there

5

EPT Host 20:
Dear Katiep65,

I am so sorry to hear of the difficult time you are going through.

If scans are inconclusive, doctors would carry out a series of blood tests to check hCG levels to see if the numbers are rising as expected. However, in isolation, hCG tests only provide a part of the picture - declining levels indicate that a pregnancy has ended and will be miscarried. It can also possibly indicate an ectopic pregnancy that is “self-resolving”. Also hCG levels rising by less than 66% over 48 hours means it is likely (but not certain) that it is ectopic. If levels rise normally, they suggest the pregnancy is implanted in the uterus. You may see from this that hCG levels only indicate certain possibilities and are not in themselves a definitive guide. A positive identification of an implanted embryo on a scan is usually needed before a final diagnosis/certainty that the pregnancy has implanted in the uterus. This is possibly the reason why your doctors are waiting until your appointment to carry out scans and tests.

Having said this, I do think that if you feel pain which seems unusual and is concerning you and, in particular, if you experience any bleeding or spotting, it is better to get checked out to be on the safe side.

I really do understand how you feel, I had a wait before my ectopic pregnancy was diagnosed too. Take things easy, avoid any heavy lifting or strenuous exercise and I hope you get some answers soon.

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

Thank you Karen, yes they have been doing blood tests every 48 hours, I’ve had 5 in total. My HCG levels have plateaued which is the concern and doesn’t match up with the scan results which don’t show anything in the uterus or elsewhere. Hence the wait! Thanks for sharing that you and a wait too, I can understand why and it seems common so that’s reassuring I’m not on my own.

6

EctopicPUL:
Hey, I had this in October last year. I wish I’d known that it can go up and down for a while - I always believed it would go down eventually in the early days and so was disappointed.

Expectant management winds you tighter and tighter anxiety wise. I had it for 7 weeks (end of Oct, discharged 5th December).

I never got a big bleed, no peak event but I did get stop start bleeding to heavier bleeding in that time. But the heavy never lasted long and was not heavy in the grand scheme of things - just in comparison to spotting.

Don’t panic if you pass tissue (also don’t assume like I did that that meant my hcg would suddenly go down consistently!) when the lining of the womb is no longer necessary you can shed it as a piece of tissue. I thought this meant it was over (bc initially they didn’t know if it was ectopic or miscarriage as I too was PUL).

Of course take in all the info but remember most info online seems to focus on surgery and Methotrexate, it’s so hard to find other expectant management-ers!

It can really work and I’m grateful (now) I didn’t need treatment. But by the end (mine was apparently exceptionally long to resolve) I was begging for a surgery for it to be OVER.

You’re gonna be okay X

Thanks so much for sharing your experience it sounds like I may have a similar one if I do end up with an ectopic diagnosis. I’m sorry that you had such a long drawn out experience that must have been very hard.

Sorry to ask in detail but can you pass the lining of the womb but still have the embryo implanted in the wrong place? I didn’t think to ask the consultant when I was last there and have been trying to find out this information online and can’t. The reason I ask is I was convinced I’d had a miscarriage prior to my first trip to EPU as the bleed was similar to my last miscarriage so was really surprised to get the label PUL. It feels like everything points to miscarriage but my HCG is saying otherwise.

Can I ask whether you work and what you did during all of this, did you take time off?

If it is ectopic I think I’ll be ok with continuing expectantly as I’m not keen on the methotrexate. Did they give you a choice?

Hope you dont mind all the questions and thanks so much for your reassurance it really helps to hear someone say I’m gonna be ok!

7

Hey no worries at all

Yes a decidual cast is very common with ectopic. This is the lining of the womb coming away as tissue rather than bleeding. The embryo can still be elsewhere. Sorry if this is graphic but I passed 2 perfectly triangular pieces of tissue that looked womb shaped, you could see the exact shape of the womb.

Therefore I figured okay, I’ve miscarried. My hcg dropped by lots on the next blood test. Then, you can imagine my surprise when it went up the test after that!

I took time off bc I was on 48hr blood tests which were approximately 1/1.5hr bus journey away. Due to the place where I work with vulnerable clients I need to be emotionally resilient in my role, and I was too stressed to give back. Also, because I was always expecting this big miscarriage type bleed I was nervous about being on the bus. I had left sided aches but no severe pain. When I would pass tissue like the cast, I had some cramps that were very similar to what my friends who have had miscarriages describe, even to how the pains mostly stopped once it ended.

There have been women on here who have worked through expectant management but it’s often mentally taxing depending on your regimen of testing. It also depends on your role - no heavy lifting or strenous exercise.

Hope this answers your questions X

8

EctopicPUL:
Hey no worries at all

Yes a decidual cast is very common with ectopic. This is the lining of the womb coming away as tissue rather than bleeding. The embryo can still be elsewhere. Sorry if this is graphic but I passed 2 perfectly triangular pieces of tissue that looked womb shaped, you could see the exact shape of the womb.

Therefore I figured okay, I’ve miscarried. My hcg dropped by lots on the next blood test. Then, you can imagine my surprise when it went up the test after that!

I took time off bc I was on 48hr blood tests which were approximately 1/1.5hr bus journey away. Due to the place where I work with vulnerable clients I need to be emotionally resilient in my role, and I was too stressed to give back. Also, because I was always expecting this big miscarriage type bleed I was nervous about being on the bus. I had left sided aches but no severe pain. When I would pass tissue like the cast, I had some cramps that were very similar to what my friends who have had miscarriages describe, even to how the pains mostly stopped once it ended.

There have been women on here who have worked through expectant management but it’s often mentally taxing depending on your regimen of testing. It also depends on your role - no heavy lifting or strenous exercise.

Hope this answers your questions X

Thanks so much this is really helpful. I’m spending so much time just trying to make sense of what is happening so hearing your experience is useful. I’ve also come across your earlier posts which have really helped so thankS for taking the time to provide all that info for others.

The decidual cast is a definite possibility I just wish I had been able to look and confirm. Unfortunately I was at work at the time and was so stressed I just didn’t think. But knowing for can happen and the embryo can still be somewhere makes sense.

I’m in a similar job (I read you’re in Social Work) where I need to be psychologically ok to work with people so I don’t know what the next few weeks will look like.

Thanks for all your help

9

You’ll be okay. Your hcg is low in the grand scheme (I know it’s frustrating when it just won’t go down).

My diagnosis is a bit weird bc it’s still kind of unknown. I’ve been on paper diagnosed as ectopic and the cast showed no gaps or embryo type features.

Approximately 3 weeks before I was discharged, I did pass something however. I woke up after the second bout of big cramps I’d had, and I’d passed something and after that my hcg fell more rapidly.

Now it’s weird bc, if it was ectopic like they describe its very unlikely to have come out.

On the other hand passing this then the hcg falling, suggest it was a Something.

I do have 2 fibroids both approx 3cm. It’s possible this dense tissue hid something.

It’s v hard to know, my diagnosis is ectopic by the consultants but who knows, essentially it was still of unknown location.

If you can, take some time from work. It really messes with your head after. I was quite practical throughout but was obsessively researching trying to understand.

I felt a weird mix of guilt after bc it’d been unplanned etc. Just be prepared for the layers of it, waves. It’s hard to give ppl your full attention when you’re analysing every twinge and for me at least, the bleeding did vary all the time.

If they’re happy with you on expectant management I think it’s a good protocol bc essentially once it’s done, it’s done and you don’t have to have further monitoring or avoiding alcohol etc. This just meant for me, the physical bit was over sooner. That said by the end I realised medicine etc wasn’t the worst thing in the world. X

10

Hello EctopicPUL,

I’m just wondering how you’re doing… my story sounds like yours I had a very odd PUL in January they never saw anything but they made me get methotrexate because my numbers werent dropping enough and then went up. They actually tried to make me get another methotrexate but I refused and a day later I started bleeding a lot and my HCG finally plummeted. I never got any answers about that though and I’m still confused wondering if I had an ectopic or just a very early miscarriage? I then (somewhat accidentally) got pregnant again in early April so only 2 months instead of 3 after my PUL but miscarried around 5 weeks… maybe from the methotrexate? Did you ever get any other tests or answers about your PUL? I have an appoint with a fertility specialists as none of the OBs are offering any input (I’m in the US so the structure of healthcare may be different).

11

EctopicPUL:
Hey, I had this in October last year. I wish I’d known that it can go up and down for a while - I always believed it would go down eventually in the early days and so was disappointed.

Expectant management winds you tighter and tighter anxiety wise. I had it for 7 weeks (end of Oct, discharged 5th December).

I never got a big bleed, no peak event but I did get stop start bleeding to heavier bleeding in that time. But the heavy never lasted long and was not heavy in the grand scheme of things - just in comparison to spotting.

Don’t panic if you pass tissue (also don’t assume like I did that that meant my hcg would suddenly go down consistently!) when the lining of the womb is no longer necessary you can shed it as a piece of tissue. I thought this meant it was over (bc initially they didn’t know if it was ectopic or miscarriage as I too was PUL).

Of course take in all the info but remember most info online seems to focus on surgery and Methotrexate, it’s so hard to find other expectant management-ers!

It can really work and I’m grateful (now) I didn’t need treatment. But by the end (mine was apparently exceptionally long to resolve) I was begging for a surgery for it to be OVER.

You’re gonna be okay X

Can you give me more info on what your numbers looked like??? Currently going through this vicious cycle of up and down HCG, been doing expectant management for close to 3 weeks, I had a major drop and then increase but my extopic is stable and not growing so doctor wants me to wait it out … :pleading_face:

12

Hey not sure if my numbers are helpful as I’ve had a pretty much identical experience to ‘ectopicPUL’

12 July: Positive PT

19 July: cramps spotting HCG 154

21 July: 6 week scan = PUL HCG 141

23 July: heavy bleeding, severe cramps passed large clots HCG 77

25 July: HCG 51

1 Aug: HCG 69

3 Aug: HCG 91 scan = clot or ectopic?

7th Aug: HCG 142 scan = clot cleared / cyst? Methotrexate taken*

12 Aug: HCG 221

15 Aug: HCG 214 right ectopic confirmed

Offered 2nd MTX / surgery - declined

17th Aug: HCG151

22nd Aug: HCG 45 bleeding, cramping

bri1989:

EctopicPUL:
Hey, I had this in October last year. I wish I’d known that it can go up and down for a while - I always believed it would go down eventually in the early days and so was disappointed.

Expectant management winds you tighter and tighter anxiety wise. I had it for 7 weeks (end of Oct, discharged 5th December).

I never got a big bleed, no peak event but I did get stop start bleeding to heavier bleeding in that time. But the heavy never lasted long and was not heavy in the grand scheme of things - just in comparison to spotting.

Don’t panic if you pass tissue (also don’t assume like I did that that meant my hcg would suddenly go down consistently!) when the lining of the womb is no longer necessary you can shed it as a piece of tissue. I thought this meant it was over (bc initially they didn’t know if it was ectopic or miscarriage as I too was PUL).

Of course take in all the info but remember most info online seems to focus on surgery and Methotrexate, it’s so hard to find other expectant management-ers!

It can really work and I’m grateful (now) I didn’t need treatment. But by the end (mine was apparently exceptionally long to resolve) I was begging for a surgery for it to be OVER.

You’re gonna be okay X

Can you give me more info on what your numbers looked like??? Currently going through this vicious cycle of up and down HCG, been doing expectant management for close to 3 weeks, I had a major drop and then increase but my extopic is stable and not growing so doctor wants me to wait it out … :pleading_face:

13

Headspace2020:
Hey not sure if my numbers are helpful as I’ve had a pretty much identical experience to ‘ectopicPUL’

12 July: Positive PT

19 July: cramps spotting HCG 154

21 July: 6 week scan = PUL HCG 141

23 July: heavy bleeding, severe cramps passed large clots HCG 77

25 July: HCG 51

1 Aug: HCG 69

3 Aug: HCG 91 scan = clot or ectopic?

7th Aug: HCG 142 scan = clot cleared / cyst? Methotrexate taken*

12 Aug: HCG 221

15 Aug: HCG 214 right ectopic confirmed

Offered 2nd MTX / surgery - declined

17th Aug: HCG151

22nd Aug: HCG 45 bleeding, cramping

bri1989:

EctopicPUL:
Hey, I had this in October last year. I wish I’d known that it can go up and down for a while - I always believed it would go down eventually in the early days and so was disappointed.

Expectant management winds you tighter and tighter anxiety wise. I had it for 7 weeks (end of Oct, discharged 5th December).

I never got a big bleed, no peak event but I did get stop start bleeding to heavier bleeding in that time. But the heavy never lasted long and was not heavy in the grand scheme of things - just in comparison to spotting.

Don’t panic if you pass tissue (also don’t assume like I did that that meant my hcg would suddenly go down consistently!) when the lining of the womb is no longer necessary you can shed it as a piece of tissue. I thought this meant it was over (bc initially they didn’t know if it was ectopic or miscarriage as I too was PUL).

Of course take in all the info but remember most info online seems to focus on surgery and Methotrexate, it’s so hard to find other expectant management-ers!

It can really work and I’m grateful (now) I didn’t need treatment. But by the end (mine was apparently exceptionally long to resolve) I was begging for a surgery for it to be OVER.

You’re gonna be okay X

Can you give me more info on what your numbers looked like??? Currently going through this vicious cycle of up and down HCG, been doing expectant management for close to 3 weeks, I had a major drop and then increase but my extopic is stable and not growing so doctor wants me to wait it out … :pleading_face:

Thanks for your info!! I have a confirmed”tubal miscarriage” it is basically an ectopic that stopped developing so I’m at less risk of a rupture as it is shrinking super slow but my numbers are just up and down between 86-189 … I’m so frustrated.