Endometriosis diagnosis confusion

[PizzaGremlin]

Hi, I'm a bit of a loss and if what happened ed to me is normal?

I was having some pain on my right side, and intercourse was painful. I contacted my gp and got a internal ultrasound at a private clinic in jan 22. During the exam the believed my ovary was stuck and that was what was causing my pain. The found it by shaking my uterus with the internal wand... won't forget that in a hurry!

They contact my gp and got a gynaecologist appointment. It went back and forth with dates which was driving me mad! But I ended up having a phone call with a gynaecologist in october 22. She was very quick and from my symptoms said I had Pid or endometriosis and listed other things which I can't remember. She said she'd book me in for a laparoscopy. I didn't think we were jumping straight to surgery.

I got booked in for another ultrasound at another private clinic in late Nov 22 and got totally gas lit. The technician said there was no way a sticky ovary can seen on a ultrasound. Also why I was doing this assuming I wanted to become pregnant. I have other health issues and don't want to become pregnant and the technician said 'ohh I think you're being to hard on yourself'. It was horrible.

I got my pre op in Dec 22 and now I just had to wait for my op date. I got one in April 23 but it was sadly cancelled due to strikes. I got another date of the 24th of May 23.

My surgeon was my consultant but I thought that was normal. When I woke up my belly button was full of dried blood and I had a incision on my left side. The nurses looked for another incision but didn't see one amd asked me if there was one further down and I said no. I went back to the ward and I was still on planet god knows. My surgeon appears and says he didn't find anything so he'll discharge me back to my gp and walked off. I had questions but he was gone.

I waited for a follow up letter or something to my gp. Nothing came. I asked my gp when I went in for my stitches as I wasn't given any instructions as to what to do with them. And the nurse said I should get a follow up letter from gyno.

I called gyno yesterday and the receptionist was confused as well and would email my consultant and ask.

Today I saw a nurse at my gp as I've been experiencing period cramps amd spasm which came out the blue. Apparently I had been discharged without a follow up! The nurse eventually sent an email to gyno saying I needed a follow up and I shouldn't have been discharged.

About an hour and bit later I get a phone call and it's gyno. I thought it was about the phone call the day before but it wasn't! It was from the email and the earlier appointment is November... and I was told to contact my gp again to write a clinical letter as to why I should get an earlier appointment 🙃 so in pain and the fact I had no follow up afyer my op doesn't count?!

Also on the phone call I found out that my gynaecologist who I spoke too in October no longer runs the clinic! And I've checked both my letters for my ops and both were with different consultants!

Thanks if you've read this far! I feel so lost and deflated.

Hope you are doing okay and have a hug ♡

[Loriiim]

Hi,

I'm really sorry you've had to go through this. The stress of being gaslit by doctors & chasing for answers is exhausting. I went through similar & thankfully got some help through this forum which helped me push for answers. It also made me realise that this happens all the time. Was your surgery private or NHS? Mine was NHS, so I'm advising based on my experience.

Firstly, stuck ovaries can be seen on a ultrasound, but not all sonographers are capable of seeing it. I had 2 ultrasounds very close together & my first was clear, but my 2nd was carried out by an endo specialist who was able to diagnose me there & then, & told me both of my ovaries were stuck (cut to surgery, only one was stuck, so sometimes they also get this wrong).

Post surgery your consultant should've come to speak to you, & you also should've been given a copy of your operation record on discharge, with a follow up phone call at the very least. My surgeon never called & I chased & chased, it was exhausting, but eventually did get to speak to his surgical assistant after a few weeks. So I would keep on at them until you get all this.

I also found out via this forum that there is a BSGE certified list of endo specialists, so I would check to see if your consultant/surgeons name is on there. If your appointments were private, Google them to see what hospitals they work at within the NHS to help you find them on the list. If they're not there, then they're not qualified or trained to be looking for endometriosis. My lap was done by a general gynae (I discovered afterwards, & it was only after questioning his credentials that his assistant called me), who found no endo & told me I'd had an infection, insinuating I'd left an STI untreated. My biopsy then confirmed endo. This week I have finally seen the endo specialist that did my ultrasound & said it was all there in the photos of my laproscopy for anyone who was trained to look for it, but he knew all this from my ultrasound. I've been readded to the surgery waiting list to have it all excised by him this time, but my first surgery was completely pointless.

Here is the list of the BSGE centres, with all surgeons etc listed: bsge.org.uk/centre/

If your consultant/surgeon isn't on here, go back to your GP & ask to be referred directly to one - you can chose which one.

You can also submit a "subject access request" (basically a freedom of information request) to the hospital where you had your surgery. I'd request all your operation notes & any images of your surgery if any were taken - request colour if possible. It took me 2 months to get mine, so be prepared to wait. Search subject access request on your hospital website for the form you'll need to fill in & for the contact details.

You can also submit a complaint to PALS, who can then do all the chasing of information/follow up appointments for you, to help relieve some of that stress. If your hospital does have a specialist endo centre you can tell them you want to be seen by them - this is how my original consultant got to look at the images from my op, & how I got my appointment with him. If not, tell them you want an appointment with the surgeon & list out the questions you want answering. Make sure you list everything that happened & how you've been given zero information. Again you can search PALS on your hospital website for their details.

Hope this is helpful, & you get some answers soon. Best of luck with it all.

[PizzaGremlin in reply to Loriiim]

Hi, Sorry it toom me so long to reply! I've been going back and forth with my Dr's and gyno and my brain just got fried. I couldn't put two words together.

I was treated under the NHS.

All the information you gave me was fantastic, found out my hospital isn't under BSGE so that's fun! But I can't thank you enough for replying and putting my mind at ease 😀

[Loriiim in reply to PizzaGremlin]

No worries, I remember being really overwhelmed too going through this, so completely understand!

Glad I was able to help. Good luck, & hope you get some answers soon.