By registering on our forum, you can view and contribute to more topics on ectopic pregnancy. Your details are confidential and we do not send unsolicited emails. For your confidentiality, you can choose your own forum name to protect your anonymity if you so wish. If you register, there is no obligation to post; you can simply take comfort from the words of others. It is entirely up to you whether you post a message or read others' experiences or do both.

Interstitial Ectopic Pregnancy

This is a welcoming place for you to ask your questions and share your knowledge and experiences of ectopic pregnancy.
Post Reply
Carolyn71
Posts: 4
Joined: Sun Feb 10, 2019 2:57 pm

Interstitial Ectopic Pregnancy

Post by Carolyn71 »

I am sharing my story as I have come to the end of being physically treated for an interstitial ectopic pregnancy and feel that one of the ways in which I can heal emotionally is to ensure that anyone else who may unfortunately suffer from this condition at least has something to read and give them hope.

In November 2018, I thought my period was late but then it arrived, and I could only describe it as weird. It didn’t quite flow like a normal period. It went on for two weeks and I also started experiencing symptoms of nausea, extreme tiredness, aversion to smells and “feeling full”. I started to think this seems like I am pregnant (I have two children of 18 and 16 years), but then thought I cannot be because I am “having a period albeit a weird one”. I decided to take a pregnancy test and it was immediately positive.

I called my doctors surgery and explained what I have just shared with you and said that I am also an older woman of 46 years. Their response was as you are older you are most likely having a miscarriage, take a pregnancy test again in about two weeks! I didn’t think that was right so questioned this advice, they then said they would call me back, which they did and said “yes, there is noting we can do, just re-test” and also can you also let us know was this a planned pregnancy. This I found astounding as that was not what I called them about and it had no bearing on my symptoms. While shocked, I explained that it was neither planned or unplanned. I then relayed this conversation to my partner and as I had been suffering for weeks, he got online and booked a private scan for two days hence.

At the private scan, we learnt that there was no visible baby, however, the sonographer listened and contacted the hospital and sent us to the emergency pregnancy unit (EPU), the next day at the EPU, they diagnosed pregnancy of unknown location and also took a blood test. My beta hcg count came back at just over 10,000. I was called back for another blood test two days later and the beta hcg was then just over 14,000. The following day was a Sunday and while at home, I became very faint and just felt totally not with it, I called the EPU and asked if I could come in, they went through a checklist and told me, that it sounded like I had a tummy bug, I insisted that I know my body well and that I did not have a tummy bug, they then eventually said come and I asked my partner to drive me to the hospital. I was not in any pain apart from occasional stabbing pains, but I knew I wasn’t feeling right. After checking me over and on my insistence that I didn’t feel right they admitted me. In the morning, I then had another scan (both abdominal and transvaginal) and after some time a pregnancy was found in the interstitial part of my womb, not close to a fallopian tube but deeply embedded in the top of the womb, totally non-viable.

My partner and I were then ushered into a side room, to meet with a consultant, registrar, student doctor and a nurse. The consultant said that it could be sucked out and they scheduled me for surgery that day. I asked to have local anaesthesia as I am terrified of general anaesthesia. They agreed to this. I then returned to my hospital bed and waited. Eventually late in the day the consultant returned and said they could not do the operation as theatre was full and I was rescheduled for the next day.

I then returned home and was told to return at 5:30am the next day. I did this and met with a whole new team. The anaesthetist visited my bed and explained why a general anaesthetic was my best option with where the pregnancy was located. Then another consultant visited and said she would be performing the operation and she wanted to run through the operation. She said they would try to suction the pregnancy but should that fail they would proceed to a hysterectomy. I was horrified and started to cry. One does not expect to go into hospital pregnant and come out unable to ever have a child again, regardless of age. By that time my partner had come in and we both started to question this. I had to be very insistent that there must be another way. The consultant said that on my notes which I had signed the previous day, it said suction guided by ultrasound under laparoscopy and a laparotomy if required and proceed. She said and proceed to hysterectomy. The previous day hysterectomy had never been mentioned. I simply fell apart at that point as I realised that had I had surgery the previous day I may well have awoken minus my womb. This left me feeling near suicidal. I had to manage my thoughts. While realising that I had a growing body of cells within my body that needed to be treated and my hcg count was steadily rising. There was also the risk of rupture which left me extremely anxious, along with a lack of sleep in the hospital and unable to do any physical activity. I was mentally and physically shattered.

I ended up getting the hospital to agree to having my consent paperwork redone and I wrote on it that a hysterectomy was only to be performed as a life saving measure. I also agreed to a general anaesthesia as this gave the doctors the best chance of resolving the matter. I cried and shook all through this and all the way to theatre. While in the hospital I googled constantly and came across many forums on ectopic pregnancy, most dealing with tubal ectopic and a handful of articles on interstitial. The lack of information was difficult to deal with. However, what I had managed to work out was that it was possible to treat ectopic pregnancy with Methotrexate, even in my case with the location and high hcg levels. I then brought this up with the consultant who said it was a possibility. But they would try the surgery first.

The surgery was supposed to last about 30 minutes. I was under for about three hours. Surgery was unsuccessful. I was returned to my hospital bed. I should also add that by this point my hcg levels were just over 16,000. The situation was the worst I had ever faced in my life. I cried all the time. The consultant came back and although the hcg was outside treatable levels, it was now at 18652, I was in good physical health and the pregnancy was unruptured. They agreed to treat me with Methotrexate. I never believed that in my life I would ever be begging to be treated with a very strong chemotherapy drug.

We waited all of the next day for the methotrexate injection to arrive. It never did. The hospital was just so busy. However, the nurses and my partner did an excellent job of looking after me. The nurses were like angels in dealing with us in the stressed emotional state in which I was in. I will also add that we were scheduled to go on a holiday of a life time travelling and had to cancel this due to the seriousness of the ectopic. We lost all of our money. In that moment, you realise that money really doesn’t matter and how important your health is. I also started becoming very upset thinking back to the advice from the doctor’s surgery and the way in which I was dealt with. Had we not had a private scan and been referred to the EPU, I could have been dead due to a ruptured ectopic and worse, yet it would most likely have happened while abroad. This shook me to my core and I am still coming to terms with it. Another reason why I am sharing this story is that we were fortunate enough to be able to afford the fee for a private scan, someone else may not be able to do so, and in this situation could very easily end up paying with their life. I share this story for greater awareness and understanding of rare issues.

The following day the Methotrexate injection arrived. I am eternally grateful. After a few hours we were released home. Having done extensive research about women who had this condition with beta hcg levels greater than mine and had been successfully treated, I also read that a diet minus folic acid rich food was important in achieving success. I then embarked on a very restrictive diet that basically gave my body no vitamins so that the methotrexate could work. Prior to this I was very fit, active and had an excellent diet. I removed all folic rich food, seeds, grains etc. The diet combined with the medication worked and by day three after the Methotrexate my levels had started falling. The drop between day four and seven was greater than expected and I cannot describe the sheer relief I felt, I burst into tears. All the time knowing that I still had a risk of rupture.

I have asked the doctors, why, why me, how. There are no clear-cut answers. I do not fit any of the at-risk factors for having an ectopic pregnancy, it is possible that a couple of tiny fibroids may have contributed to this extremely rare form of ectopic pregnancy, but this I will never know. The hospital had only ever dealt with one other case and treated that via hysterectomy. During my treatment I heard the consultants using the terms cornual and interstitial ectopic and in some cases interchangeably. I was able to clarify that mine was interstitial.

I was also sent for more scans and the sonographer was friendly and said that the pregnancy looks to be disintegrating (prior to this the sonographers were very silent and there was a lack of info). This gave me hope. I then returned to the hospital fortnightly and had blood tests, the hcg levels continued dropping. Every day I cried, I cried for the loss of our child, I cried through sheer exhaustion, I cried through not knowing, I cried though not being able to be active, I cried through not being able to eat whatever I wanted – especially as Christmas was coming, I cried as I was bleeding almost every day, I cried because I was scared that I could rupture and that could mean death, a hysterectomy, more time in the hospital. I cried through not knowing, a lack of information, I cried through not being able to have a physical relationship with my partner (but having lots of hugs and cuddles helped – it really helped). Every day I spoke about the same thing. This went on for over two months.

During this time, I also called the ectopic pregnancy trust and spoke at length with a counsellor. This helped greatly. Which is why I have shared my story through their website. During the two months, I had some weeks where there was minimal bleeding, some weeks where there was none and some where I passed huge clots. This was terrifying. The week before I got the all clear was horrendous, every visit to the toilet I passed clots. I had assumed that as I got to lower hcg levels there would be less blood, in my case this was not the case. Towards the ending I had the biggest clots I had ever seen. I can only describe it as a horrifying experience. Strangely enough, I went through this entire experience without taking any pain killers. So being in pain is not necessarily a sign of ectopic, at that level we are all different. So, when being asked about pain, it is not a clear indicator (which is what I think made my doctors surgery overlook the severity of my situation) in my case, I had discomfort and mild back ache while passing the clots and took lots of rest.

Finally, after two and a half months, my hcg levels were down to 3. I did not go into joy, just a daze. I cannot really describe what I felt as I am still in shock as to all the events that happened and yet have to write a complaint letter to the doctors’ surgery for their lack of care. Slowly very slowly, I am getting back to “normal”, my partner and I are also getting back to “normal”. We are still at the stage of talking about the situation daily and I still cry. I haven’t yet had my first period since the ectopic and from reading realise this can occur at a variable time. Right now, I feel incredibly lucky to be alive, to have my womb and am continuing to heal physically and emotionally. We don’t know if pregnancy features in our future again. Once we are recovered mentally and physically, we may see what mother nature has in store for us. I write that last sentence as age is not a barrier to conception.

I am taking each day as it comes. The number of people with whom I can discuss/have chosen to discuss this is limited, so as a couple we have only shared with our immediate family and a few friends as a way to protect ourselves from any insensitive comments while we heal. Through sharing this anonymously and wider I hope that if you are facing this rare form of ectopic pregnancy that you are given hope and perhaps albeit a small amount of comfort.

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Interstitial Ectopic Pregnancy

Post by EctopicPUL »

I haven’t had this type of ectopic but this is so useful to me. What’s interesting and what I wish I’d done earlier (but am still doing now!) and what I will take with me to any future medical things that may come my way in future is how you have to have the confidence to ask questions. I’ve been offered contraceptive advice etc that is all contraindactory when I’ve said I want NOTHING that increases risk of ectopic etc.

I think you have to quickly become your own best advocate which is so hard when you are hormonal, and terrified. Your diagnosis was different to mine but it personifies that experience. I was phobic of the prospect of a chemo drug at the beginning with it inducing a panic attack - by the end I begged for it!

Well done for asking questions and pushing for what you wanted. On American boards and with certain really rare types of ectopic people are treated with Mx into the tens of thousands - I’m not saying everyone should rush to ask for this but Munira reminded me on the helpline that it was for me to advocate and ask questions - I could take control.

Bizarrely I do all that at work but I was so panicked.

Thanks for sharing. Every story I read that echoes my feelings makes me feel less bonkers :)

EPT Host 20
Posts: 2451
Joined: Thu May 31, 2012 10:58 pm

Re: Interstitial Ectopic Pregnancy

Post by EPT Host 20 »

Dear Carolyn,
I am so sorry to hear of your ectopic pregnancy and loss, I can tell from your own words, just how frightening an experience this all was and I am so sorry you have had to go through this.

Thank you so much for having the courage to write about your journey to support that many ladies/families experiencing ectopic pregnancy.

I know that when I had my ectopic pregnancy I also looked for a reason and almost automatically we tend to blame ourselves. From the bottom of my heart, there is nothing you could have done to prevent the ectopic pregnancy from happening. I cannot emphasise enough - you are not to blame. Please be kind to yourself and I send you gentle hugs.

Much love,

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?
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
***************************************************************************

Carolyn71
Posts: 4
Joined: Sun Feb 10, 2019 2:57 pm

Re: Interstitial Ectopic Pregnancy

Post by Carolyn71 »

I am glad my story helped. I learnt too how much we must advocate and feel incredibly lucky to still have my womb. As women we have to keep fighting for greater standards of health care, information and understanding.

Carolyn71
Posts: 4
Joined: Sun Feb 10, 2019 2:57 pm

Re: Interstitial Ectopic Pregnancy

Post by Carolyn71 »

Thank you EPT Host 20, it is a long journey, hopefully each day gets easier. This site was a great source of information, comfort and hope to me, my partner and wider family, as no one had ever heard of or realised that there were so many forms of ectopic pregnancy.

wishful
Posts: 7
Joined: Sun Apr 21, 2019 11:07 pm

Re: Interstitial Ectopic Pregnancy

Post by wishful »

Hello Carolyn,
Your post gave me the strength to sail thru my ectopic and come out of it finally. I cried with you...because in many ways i too felt how you felt, though my situation was not same as yours, the emotional side was similar.. Thank you for sharing your experience.

Carolyn71
Posts: 4
Joined: Sun Feb 10, 2019 2:57 pm

Re: Interstitial Ectopic Pregnancy

Post by Carolyn71 »

Thank you wishful. It is such an isolating experience. I am glad it helped.

Bhakti
Posts: 37
Joined: Thu Oct 11, 2018 8:08 pm

Re: Interstitial Ectopic Pregnancy

Post by Bhakti »

Hi Carolyn

Thank you for sharing your story. I too have an interstitial ectopic pregnancy. Last year I had an ectopic in my left tube. My left tube was subsequently removed. In April I got pregnant again but I now have another ectopic which as the consultants described it “is in the stub of the left Fallopian tube that enters the womb” this part wasn’t removed at surgery last time and is basically half in my womb and half in my tube. My hormone levels are 8,000 and I got given the mtx shot on Thursday. You’ve given me a lot of hope so thanks. I hope you are now feeling much better.

gracia2510
Posts: 4
Joined: Wed Sep 29, 2021 4:12 am

Re: Interstitial Ectopic Pregnancy

Post by gracia2510 »

Hi Carolyn,
Thank you for posting this. I really can totally relate with your story because I'm currently going through a cornual ectopic pregnancy. You have explained it very well... I am sorry the you went through this too but thankful that you shared the story and it made me feel I am not alone and there is still hope for me to get through this..

Here is my story:
I suspected having an Asherman because I had very light periods after I had a D/C 4 years ago. I finally reached out and seek help and finally had my hsg and hysteroscopy done on Jan 2021. My doctor found no scars and my tubes were all in good condition (thankfully), but from the endometrium biopsy, they found that I had a endometritis. It was then treated by doxycycline.
Doctor said that I could naturally try to conceive for 6 months and if not successful, she would recommend me to get estrogen therapy for helping thickening the lining (also because im trying to conceive on 36yo).
I finally got pregnant on September after 6 cycles, but the fear was very real because of my previous miscarriage 🙁

A week after I found out pregnant (around 7th week), I started having light brown spotting for 3 days, cramping and finally bleeding. I thought I had another miscarriage because I have passed all the pregnancy tissue (similar to what I had 4 years ago) because there is no more pain and bleeding (very light). I had an ultrasound the day after and they could not find any embryo or other pregnancy tissues left in my uterus, tubes and ovaries. However, my HCG level went up from 2,500 to 2,700 (first usg) to 3,700 (second usg) within 2days). The doctors then monitored my hcg levels and conducted ultrasound again because they suspected I had an ectopic pregnancy which could not found/located by usg (Pregnancy of Unknown Location). It was a week after the bleeding and I don't feel any pain/cramp at all.

Two days after that, I had another ultrasound along with the hcg level test again. This time they found something on the cornual side of my uterus which is suspicious for a cornual ectopic pregnancy because my hcg was rising about 39% in the last two days (3,700ish to 5,100ish). I was more ready to receive the methotrexate medication at that day after did some research and read others' stories on forums.

I had the 1st shot on Sept 22 and 2nd shot on Sept 25 (first and fourth day). Praise The Lord, my hcg levels were going down gradually: It was decreased to 4,700 (8% decrease from the 1st shot to 2nd shot) and to 3,800 (17% decrease from the 2nd shot ~ fourth day of taking the medication ~ to the seventh day of follow-up). I will be monitored every week to see how it goes. So far the side effects are little, I feel no pain. However, I am so exhausted with everything that is going on and as you shared: "all the time knowing that I still have a risk of rupture". I hope it will continue working beautifully until my hcg levels reach 0 and I would be able to try again although I'm so scared if this happen again in the future. Thank you again for sharing your story and I hope I am going to have a good result too in the couple of weeks/months (hcg levels go down with no need for surgery or any other frightening risks). I want to trying to conceive again but I'm so scared if this happen again.

THANK YOU!❤

gracia2510
Posts: 4
Joined: Wed Sep 29, 2021 4:12 am

Re: Interstitial Ectopic Pregnancy

Post by gracia2510 »

Bhakti wrote:
Sun May 12, 2019 10:45 pm
Hi Carolyn

Thank you for sharing your story. I too have an interstitial ectopic pregnancy. Last year I had an ectopic in my left tube. My left tube was subsequently removed. In April I got pregnant again but I now have another ectopic which as the consultants described it “is in the stub of the left Fallopian tube that enters the womb” this part wasn’t removed at surgery last time and is basically half in my womb and half in my tube. My hormone levels are 8,000 and I got given the mtx shot on Thursday. You’ve given me a lot of hope so thanks. I hope you are now feeling much better.
Hi Bhakti, I hope you are doing well and everything went well after the time you posted it. I know your post was 2 years ago but if you don't mind, I would like to hear your experience with this ectopic pregnancy. Did everything go well with the mtx and no need a surgery? I am going through similar thing and I am scared if it is going to rupture. I started had cramping and bleeding on the 8th day of mtx. Is it normal?

Thank you beforehand.

Best,
Gracia

Bhakti
Posts: 37
Joined: Thu Oct 11, 2018 8:08 pm

Re: Interstitial Ectopic Pregnancy

Post by Bhakti »

Hi

I'm so sorry for the late response. I haven’t been online much. Unfortunately no it didn’t go ok in the end. I ruptured after having methotrexate and I lost 3 litres of blood and did need surgery. I have however since recovery conceived twice and both times the baby has made it to the right place. Unfortunately I lost my son at 22 weeks pregnant due to an incompetent cervix but I have in September finally had my rainbow baby. I hope you’re ok? Hope it all went well for you. X

Bdetimc
Posts: 3
Joined: Fri Oct 29, 2021 5:36 am

Re: Interstitial Ectopic Pregnancy

Post by Bdetimc »

Hi Bhakti thank you for popping back on and sharing your news. I am so so happy for you! I have been through a very similar journey as you with two ectopics in short succession… Thank you for giving me new Hope. I hope you are looking after yourself, all the best xx

Post Reply