Ectopic and Endometriosis

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1

2 and a half weeks ago I found out I was pregnant - my Husband and I were only in our second month of trying. But when I found out I had already been bleeding for 2 weeks (I had originally thought it was an irregular period) so I suspected all wasn’t well.

I went to the hospital and had pregnancy and blood (hcg) tests - they said it was too early to scan and they classed the bleeding as only spotting level. They said I was 6 weeks and took bloods every 48 hours.

It took 6 bloods, 3 ext scans, 3 int scans over 11 days for them to decide it was ectopic - by which time tube removal was the only option.

This happened on Tuesday.

After theatre they explained that they had found moderate endometriosis in 8 spots on my bowel, uterus and ligaments. They decided against treating these as I’d had no pain and the laproscopy had already been complicated (I have 5 keyholes instead of 3).

Basically it feels like i’ve gone from excitement - we’d been on honeymoon, were ttc and managed to be successful after only a month to suddenly having my fertility levels drastically reduced.

It seems Endo is so unclear - causes, symptoms, effects it may have. I’m finding it difficult to deal with the not knowing.

My mum says look at the positive - I did conceive immediately and there is no endo on the other tube/ ovary at the moment.

I cant help but dwell on the negative - I’ve lost a tube and been diagnosed with something that causes further fertility issues in the same day.

My H has been very supportive but he already has 3 kids and feels like I’ll resent him because things worked out fine with his ex. I don’t, but what if I do eventually. I don’t want to be that person.

Getting pregnant straight away to suddenly having to deal with this seems cruel.

It sucks.

I’m scared and angry and probably still in shock that this has all happened within a couple of weeks.

Any support or kind words are appreciated. Just felt like I needed to write it down/ let it out.

How do I deal with this in the best way?

2

Dear Loopy9,

I am so sorry to hear of your ectopic pregnancy and loss.

When we experience ectopic pregnancy we are suddenly faced with a life threatening emergency and it’s treatment, reduction in fertility, concerns about the future and the loss of our babies. Experiencing any one of these is an ordeal, putting them together is immense and your feelings are completely normal.

It is normal to feel anxious about the future. We experience a mix of emotions from wanting to try again to being petrified of what may lie ahead. We never forget but we can learn to accept what happened. It I a slow process, might be weeks or months ahead. In time, we can get to a place where we feel comfortable trying again. When this is, is individual for each person. There is no timeframe for recovery, take each day as it comes.

Importantly early scans avail. As soon as you know you are pregnant, contact your local EPU to inform them and book in for an early scan at around six weeks. Remind them of your previous ectopic pregnancy. This self refer route is the best route in our view. Hopefully you will have some comfort to know you are under the radar of medical professionals right away.

It maybe of some comfort to know that the chances of a further ectopic after a first in UK is 10%. So that’s 90% chance of the embryo being in right place next time.

Trying to conceive again can be a challenging time for couples especially after experiencing loss. I will do my best to help. While generally it is possible to conceive after an ectopic pregnancy, the amount of time it takes varies from couple to couple. Factors include age, general health, reproductive health and how often you have sex, among other things.

I wish I could give more precise information, but as I do not have access to your and your partner’s medical records, it is difficult for me to provide specific details. Generally, we and many healthcare professionals advise keeping a healthy balanced diet, maintaining a healthy weight and abstaining from alcohol and smoking.

Importantly, help is available if conceiving naturally has not yet been successful after some time trying - and the EPT advises that women under 35 should seek medical advice following 12 months trying to conceive and those over 35 should seek advice after 6 months.

Sending much love and warm hugs,

Karen x

If we have been able to help you, are you able to help us with a small donation or by volunteering?

Further information is available at www.ectopic.org.uk

Email us at ept@ectopic.org.uk.

Our helpline is 020 7733 2653 (available Monday to Friday 10am - 4pm).

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

Thank you very much for the response.

I’m having good days & bad days, which is normal I’m sure.

I’ve found the last day or two (8/9 days post op) that I’ve had quite a bit or discomfort on my pelvis on the side of my salpingectomy. Could it be delayed pain from the surgery? Strange that it’s come on as I’m over a week into recovery…

4

Dear Loopy9,

Experiencing an ectopic pregnancy is a huge ordeal and you are in the early stages of recovery. Your body needs time to heal from your surgery which is in itself a gruelling task. You have also had to process the loss of your baby and been through an immense rollercoaster of emotions - all of this will take time to come to terms with.

Pain during these early stages is very common. You should take it very easily for about six weeks after surgery. Your body will be using its energies to heal internally. It is normal to feel physically and emotionally exhausted during this time and please do be kind to yourself. Recovery can take time and some days will be better than others, one day you maybe ok and the next you maybe in discomfort or more emotional. This is perfectly usual and the healing process will go back and forth in this way for however long you need. It is important to listen to your body’s signals and pain and feeling tired are your body’s signs to tell you to rest. We suggest keeping a healthy balanced diet, drinking lots of water and resting. Once your wounds have healed, very gentle exercise such as a short walk can help, but please do take this slowly.

Sending much love,

Karen x

If we have been able to help you, are you able to help us with a small donation or by volunteering?

Further information is available at www.ectopic.org.uk

Email us at ept@ectopic.org.uk.

Our helpline is 020 7733 2653 (available Monday to Friday 10am - 4pm).

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.

5

Loopy9:
2 and a half weeks ago I found out I was pregnant - my Husband and I were only in our second month of trying. But when I found out I had already been bleeding for 2 weeks (I had originally thought it was an irregular period) so I suspected all wasn’t well.

I went to the hospital and had pregnancy and blood (hcg) tests - they said it was too early to scan and they classed the bleeding as only spotting level. They said I was 6 weeks and took bloods every 48 hours.

It took 6 bloods, 3 ext scans, 3 int scans over 11 days for them to decide it was ectopic - by which time tube removal was the only option.

This happened on Tuesday.

After theatre they explained that they had found moderate endometriosis in 8 spots on my bowel, uterus and ligaments. They decided against treating these as I’d had no pain and the laproscopy had already been complicated (I have 5 keyholes instead of 3).

Basically it feels like i’ve gone from excitement - we’d been on honeymoon, were ttc and managed to be successful after only a month to suddenly having my fertility levels drastically reduced.

It seems Endo is so unclear - causes, symptoms, effects it may have. I’m finding it difficult to deal with the not knowing.

My mum says look at the positive - I did conceive immediately and there is no endo on the other tube/ ovary at the moment.

I cant help but dwell on the negative - I’ve lost a tube and been diagnosed with something that causes further fertility issues in the same day.

My H has been very supportive but he already has 3 kids and feels like I’ll resent him because things worked out fine with his ex. I don’t, but what if I do eventually. I don’t want to be that person.

Getting pregnant straight away to suddenly having to deal with this seems cruel.

It sucks.

I’m scared and angry and probably still in shock that this has all happened within a couple of weeks.

Any support or kind words are appreciated. Just felt like I needed to write it down/ let it out.

How do I deal with this in the best way?

Sounds like we’re in similar boats. They found endo in me during my salpingectomy but don’t want to treat me for it just yet as it ‘isn’t causing me any problems’, despite them saying it caused my ectopic.

Everyone keeps acting like its not a massive issue and keeps telling me everything will be fine but all I keep thinking is I have 1 damaged tube left and this condition that affects fertility so how can I believe everything will be ok??

I understand how you feel. Sending lots of love and strength xxx

6

Thank you for replying June I really appreciate it.

It’s hard isn’t it.

Although I often suspected it (call it intuition) I didn’t know I had endometriosis until the morning after the operation.

I felt like someone had said oh you know how we took that part out & reduced your chances? Well now there’s a shitload of other stuff in there to hinder you too, ok bye! The doctor who told me (not the consultant who operated) also said oh & because your husband has kids you won’t get ivf on NHS.

Kick me when I’m down love!!!

I know I’ll struggle tomorrow but there seems to be so much planned over the next week that I hope I’ll be distracted enough.

I’m really sorry that you’re having a similar experience & I hope this week goes as well as it can for you too x

7

Thank you for replying June I really appreciate it.

It’s hard isn’t it.

Although I often suspected it (call it intuition) I didn’t know I had endometriosis until the morning after the operation.

I felt like someone had said oh you know how we took that part out & reduced your chances? Well now there’s a shitload of other stuff in there to hinder you too, ok bye! The doctor who told me (not the consultant who operated) also said oh & because your husband has kids you won’t get ivf on NHS.

Kick me when I’m down love!!!

I know I’ll struggle tomorrow but there seems to be so much planned over the next week that I hope I’ll be distracted enough.

I’m really sorry that you’re having a similar experience & I hope this week goes as well as it can for you too x

8

which tube did they remove?

9

Left, you?

10

left as well and it was my first pregnancy ever xxxx

11

Mine too Virgo

My H has 3 kids already. I’ve waited patiently for his kids to be older, independent etc to start trying.

None of them know what happened. I can’t bear them on their mum knowing (she won’t be happy if we have a child & I can’t cope with any smidge of negativity from any of them right now).

Because he has kids there is no NHS ivf, we have no money & H is older. It’s basically natural or nothing.

And this THIS is my first experience. It’s crueller than anything.

How are you doing? X