Happy 1 year surgerversary

May 1st 2025, a whole 365 days since my second laparoscopy for Endometriosis - one to remember. I wanted to take some time to go over the journey to the surgery, post op horror, reflections, plus the future.

My first surgery was in 2022 and was under a general gynae where this one was under a very well known Endo surgeon (part of a well known charity in the community), in an accredited BSGE centre. I had very high hopes due to the known surgeon and begged my GP to refer me there for my second surgery. I don't regret it per se, but it did not go very well.

Back in May 2024, after my surgery, I did mention online that i regret having my first surgery because of all the unknowns and in the moment, felt that maybe if i just had the 1 surgery under the specialist, they would've seen the Endo in all it's glory as opposed to bits and pieces. However, as time has gone on, I don't regret the first surgery, I actually now wished my second was done properly by the first team.

It's important to remember, BSGE accredited centres and surgeons are needed however, in my case, I didn't have a good experience. The first appointment I had they admitted the first surgery should've been done by an accredited surgeon and that the scan shows Endo so they can't comment on anything until they have their own radiographers check the scan and comment on it. In the same breath, I was told I probably don't have Endo and I shouldn't have surgery again yet as we should trial new contraceptives to control it. That comment should've been my first red flag but I was desperate so I stayed.

My second appointment was with another consultant who was quite nice and at this time their radiographers had checked the scan and they all confirmed there are multiple lesions spread around including a 10cm lesion on my sigmoid colon. Due to my symptoms at the time and their new report, I was added to the surgery list, which was quite long but hey, at least I was added.

Whilst waiting, I was called to be seen again by the 2nd consultant who advised there's a new clinical trial and I would be a good candidate. I was super excited and agreed to come in to sign some papers. We went through the trial and I started the paperwork. Unfortunately, when they realised I was on Ivabradine and have IST, they advised I should ask my cardiologist first before we proceed. My cardiologist immediately said absolutely not due to the type of drug being used in the trail. So I waited for the surgery.

In between, I had another appointment, on the phone, this time with the main surgeon of the clinic and the one I came there for. To say it was shocking is an understatement, Everything they say on social media and online was all a lie and only for show. They were just like the rest who advise us it's just this that or the other and it sounds like Endo but can't be etc etc. I was quite upset as my hope died down after this.

It was a long wait and I got to a point where my pain was not good, my stomach was worse and I spent a week or so, not being able to walk properly due to a pulling pain. Eventually, after begging for help, I was given a date. Before the surgery, I spent quite a bit of time sending my health information, letters from doctors and going over my usual surgery protocol stuff and I was assured everything will be done accordingly.

The night before, after I started bowel prep, they called to advise my slot has been moved from morning to afternoon, after I explained over and over that I only have the morning slot due to health issues. Anyway, I showed up a bit early so they could give me some saline to stay upright and after a short wait, I was off to the theatre. After the surgery, I woke up in awful pain as I didn't get effective pain relief, again, they were told I may need extra pain relief and ignored this too. Once on the ward, I was told I can't keep my catheter and it will be removed in 24 hours. Again, I was ignored. They were advised I need to keep the catheter due to lack of bladder muscle and a not so great functioning bladder. It was removed in less than 24 hours so I didn't even get the full 24! Following this, they started to move me and get me again. A letter specifically from the autonomic nurse for this surgery literally stated not to move me too quickly and to ask if my pain is under control etc before moving me. This too, shock horror, was ignored.

All of this and more, resulted in multiple raging infections, in both my bladder and the wounds, plus open wounds and a bladder which wouldn't cooperate for nearly 2 months. They ignored the part of advice where I warned them my wounds heal slowly and I have EDS. 9.5 weeks it took for my wounds to settle and close. A few rounds of antibiotics, multiple nurse visits, leaking wounds and pain that shouldn't have been there, could've all been avoided or even lessened had they just listened to a word I said or the word of my team.

Yes I am better than I was before the surgery, not 100% but something is always better than nothing. I have a quality of life back and can do more again, which I am grateful for. Not entirely sure what the future holds and there are now talks for a third surgery due to the ovary adhesion and the incredible pain and bleeding I experience if I try to stop or even lessen the birth control pills + the general pain and soreness, which we did not expect to still be around as after my first surgery, the pain was more settled than now.

I really want to avoid a third surgery and am looking at alternative anything that could help. All within limit, doing proper research and not agreeing to things blindly. Hoping to get some relief as it is all about symptom management and not a cure.

A journey not a marathon.