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Story of two surgeries / persistent / chronic ectopic

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stikl
Posts: 5
Joined: Tue Mar 30, 2021 9:57 am

Story of two surgeries / persistent / chronic ectopic

Post by stikl »

Hi,
Wanted to share my story and see if there is anyone who had similar experience.
Four days after we found out we were pregnant, I had some bleeding, went to a hospital and was told it could be ectopic or miscarriage or everything is ok. It was early, around 5 weeks. Since hcg was only 234, I was on expectant management. In 32 hours, hcg went up to 680, but ultrasound showed nothing in uterus and a mass with strong blood supply in left tube. I was told to go to the hospital asap.
At the hospital, they determined I would need surgery, but let me "choose" if I want to be operated immediately, because hcg was at 680. Everything happened very fast, nobody explained the route of expectant management from then on, and knowing the risks of rupture, surgery was chosen for next morning. I felt I had to choose, but wasnt properly explained the risks of early surgery with low hcg. It seemed doctors recommended surgery too.
(My country rarely suggests MTX for healthy women without contraindications for laparoscopy, i.e. MTX is not a standard route I understand, and nobody ever mentioned it to me. Mtx v surgery, I'd prob choose surgery anyway).
They told me surgery went well (took less than 30 mins) and they eliminated the ectopic pregnancy. I had salpingostomy, where they saved the tube. I was discharged same day after surgery and was told to check hcg levels in 3 days. Hcg levels went up to 978 3 days after surgery and to 1236 4 days after surgery. I went back to the hospital, they again saw a mass and some liquid in left tube and told me I'd likely need a surgery again, or I could wait a few days to check my hcg and see if it would come down. Their recommendation was surgery though since I had some pain (not terrible though) and was very sensitive to ultrasound. They operated again, and again saved the tube, but did a larger cut into the tube. They said there was blood already, and it was good they operated. I was discharged the next day, and hcg level in one week went to down 54, and down to 8 two weeks after surgery. I'll check it in a few days and hope it to be 0 then. They cut into the same incisions again during the second surgery and I had again full anaesthesia.
I had to do second recovery again, with unclear protocol - ie was never sure how much time I should take for recovery after two laparoscopies in one week. I started to bleed few days after surgery and had a lot of pain during the first week of bleeding but was told it is normal, ie uterus was clearing up due to drop in hormones. Bleeding lasted for two weeks. Its now two and a half weeks after second surgery, and I was feeling quite better, but yesterday night I got stabbing /shooting pain in my belly button incision, which I disnt have before. I had it checked by ultrasound, they cannot see anything wrong, it is also not infected, but there is a spot next to incision which is so painful that once it touches any fabric or once I move in a certain way, it feels like hundred needles put to my skin. I've spent half day at the hospital being tested yesterday, but they do not know what is causing the pain, and said it may be due to skin/nerves healing and I had two surgeries so it may have caused damage and I should wait it out. This is very frustrating and I am so devastated to take ten steps back in my recovery as I am again feeling so much in pain.

I wont even start on the emotional side of this... I just feel broken and this [heck] does not seem to stop.

Nobody at the hospital fully explained why first surgery didnt work. They said they "cannot say it didnt work, as even a molecule left of ectopic pregnancy could have caused it to start growing again", and said I had persistent extopic pregnancy, but since I had two surgeries and the second worked, I cannot stop the feeling that the first one was negligent... Also one doctor said early surgery with low hcg has a higher risk of persistent extopic ,but this wasnt told to me before first surgery. I feel so frustrated and cannot shake the feeling that smth went wrong and I wasnt told and now I have to suffer pains that they can only explain by 'you had two surgeries...'

Has anyone had similar experiences? Persistant ectopic pregnancies?

EPT Host 22
Posts: 659
Joined: Fri Nov 20, 2015 10:26 am

Re: Story of two surgeries / persistent / chronic ectopic

Post by EPT Host 22 »

Hi Stikl,

My heart goes out to you for how much you've had to endure in such a short period of time. I am so sorry for your loss, and for this very confusing and traumatic intervention. I am glad that you are on the other side of the surgeries, but I know there is much healing and recovery to come. I am not medically qualified to comment on your particular situation, and am not sure your country of origin, but I will do my best to help.

The most important thing right now is your recovery and giving yourself time to rest. I am sorry that you've had to go through two surgeries, and the complications of recovery from those. It is good that you are reaching out for further care, and I encourage you to continue to do so. You may find keeping a journal of the pain including, where it it, when it spikes, and any treatment that provides relief (paracetamol) to share with your doctors. As well, you can use it to keep a running list of questions that you would like to ask them.

In regards to your standard of care, within the UK health system, there is a support service to report non satisfactory standards of care. You may want to look into this option in your country if you have found that options / outcomes were not clearly provided to you. We have heard from other women that it can be very confusing in the moment to understand the options being presented to them, and later, they have questions about other pathways. More difficult, is our curiosity at whether we should have chosen another course of action or if we'd had more information. Often in the setting and learning for the first time about ectopic pregnancy, that is impossible and too much to expect from ourselves.

There can be lingering pain associated with surgery, and women have reported different sensations from where their tubes have been removed - possibly from nerves, scar tissue, or ovulation pains. That is why the journal can be helpful over a longer period of time, to track when / where you are having these sensations.

Most importantly right now, you need to give yourself time and space to heal. The emotional recovery is just as important, and we are here for you however you need. If you'd like to speak with one of our volunteers, your can reach us in the contact information below. As well, the Trust encourages talking therapies as a way to help with emotional recovery, and you may want to find these options where you are. Regardless, these Boards are here for you whenever you need them.

With good wishes,


Michele

The Ectopic Pregnancy Trust
Registered Charity Number: 1071811
Ectopic pregnancy patient information suite: Highly Commended in the 2019 BMA Patient Information Awards

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