no endometriosis after surgery

[Emmlou98]

Hello, I’ve been suffering with pain around my cycle for the last 10 years. 2 years ago I finally got my gp to understand the pain I had been dealing with for so long and got a referral to gynaecology. I was seeing a consultant who specialises in treating endometriosis which I was so happy about. He got me to try Zoladex for 6 months as he says that gives the best indication of it being endometriosis if it works and because he knew how scared of surgery I was. It worked really well so he asked if he could go ahead with putting me on his list for surgery which I agreed too. He told me he would diagnose and treat endometriosis if found!!! He also said he would be very surprised if no endo was found due to how much relieve I got with the Zoladex. Last month I got a phone call asking me to book my surgery for Christmas Eve but that it would be with a different consultant. I was hesitant but eventually agreed as they said it could be over 6 months until he would be able to fit me in.

Day of surgery came around and I was so anxious. I met the new consultant and straight away she told me if she found endometriosis, she wouldn’t be treating it as she isn’t able to do that. I felt like crying straight away. She also said she wouldn’t be able to check everywhere due to me being on my period?? I nearly walked out at that point but stayed as I had waited so long for this. But at the same time, I had rang the day before to say I was on my period and ask if this would effect the surgery and she said no??

When I came round after the surgery I had a doctor and nurse stood by bed. When he saw I was awake he put his thumbs up and said ‘good news, there is nothing.’ And just walked off. I instantly burst into tears. I also had the mirena coil inserted too

After 10 years of pain and nothing is found (but also not everywhere having been checked). I then got told I would have 1 more appointment with my original consultant and then would be discharged back to my GP. What would people recommend I do in this situation. I’m definitely thinking of contacting my consultant to bring the appointment forward as I have so many questions. And he sees people privately too so should I ask about going private as I will be discharged from NHS? I feel like people are just going to think this is all in my head now this has came back clear.

[Lily1986]

gosh I’m so sorry you’ve had this experience. The thing with Zoladex is it shrinks Endo lesions which means it gets missed. Does your original consultant know they’ve just ‘fitted you in’ with a different consultant? Was the new one even an endo specialist? It’s just awful, so many people are being told they don’t have it and then when they pay to go private it’s magically being found (and often severely too).

Just their whole attitude really winds me up, like putting their thumbs up like it’s great they’re just fobbing you off and leaving you to suffer. Doesn’t effect their life at all they still get paid and you’re left with no answers.

I would do a subject access request with the hospitals legal team and obtain all notes, images and videos of your surgery. Then request a second opinion. It’s rubbish that we have to resort to this but if you were able to afford £200 just for an initial consultation privately with an endo specialist it’s well worth it. They can then do any further investigations and treatments on their nhs clinics. It just fast tracks everything. I’d wait until you have copies of photos etc to take with you.

Best wishes to you, please feel free to message me anytime. I’ve a lot of experience dealing with medically ‘professionals’ like this and lost my fertility and quality of life as a result so I refuse to allow them to treat other women the same.

❤️

[Emmlou98 in reply to Lily1986]

Thank you so for much for this. And I have no idea if the original consultant knew. I’ve contacted his secretaries this morning to demand an earlier follow up as I cannot wait until June like originally planned. And I’ve looked online at the woman who done my surgery and no where does it say anything about endometriosis. I’m pretty sure my consultant is the only one at my local hospital. And would explain why she would have been leaving it that day. What I don’t get though, is if she’s not experienced enough, why didn’t they put someone else on her list. I know someone who sees the same consultant as me who’s waiting to have fibroids removed so she could have gone in instead. It just felt like her list was crammed with ‘quick and easy’ jobs.

I definitely felt like there was no thought about my emotional state. I started crying immediately after and was just met with ‘why are you crying’ from one of the nurses.

I’m definitely going to wait and see if I can get this follow up appointment for January and see what I get told there. Then if I get fobbed off again I’ll try obtain all the notes and take it for a second opinion. Thank you

[Lily1986 in reply to Emmlou98]

that sounds a good plan. Remember you can write to MP and PALS if necessary too.

I’m so sorry, It sounds like they’ve just been trying to get waiting lists down with no thought what so ever to needing an Endometriosis expert to look for your disease.

Honestly I bet you anything it’s there and because the surgeon isn’t trained to look for Endo that has shrunken due to Zolodex (which will un-shrink / return as soon as zolodex stops). It’s a very convenient way to get their never ending waiting lists down but is absolutely no help to the patient what so ever.

Definitely get the medical records, photos and video for your own reference, the amount of stuff I’ve discovered from doing this about my own body that I’d never have known about is ridiculous .

Best wishes to you x

[KittyTherapy]

Hi,

This sounds really horrible! I'm not surprised your feeling so stressed out & dismissed. I've contacted PALS (patient advice & liaison service) in the past to raise concerns following a very poor appointment with a 'stand in' as I came away with incorrect information and being fobbed off basically. I had requested an appointment with my normal Dr and PALS managed to support bringing this appt forward. So could be worth contacting them to report your concerns and request the action your seeking.

Also just to add, i was on my period during my lap and was not told it would be difficult to assess everything.

I had also put in a subject access request to obtain my records (free to do) which includes your op notes and any images/ videos, as i wanted as much information as possible to be able to take with me wherever I went afterwards. You may be surprised by the things they fail to tell us!

Hope you can get some answers x

[Emmlou98 in reply to KittyTherapy]

So did the same happen to you? I’m so sorry. I wish they realise just how bad it makes people feel just being dismissed all the time. It’s definitely something I’ve looked into. Just hoping that I will get some answers when I see my original consultant at some point. I suppose he does count as a second opinion at the moment. Hopefully he will be able to look at the photos. I have also heard horror stories about people saying there was no photos for them. It’s just rubbish

[KittyTherapy in reply to Emmlou98]

My whole journey has just been hodgepodge and and had to fight all the way through for myself. It's so incredibly stressful but it's the only way to get proper help. My consultant tried fobbing me off from the get go to be honest and I had to demand investigations. Then surprise surprise my scans returned with strong indications of endo. Everything takes far too long, waiting list after waiting list. Had my lap in March, severe adhesions everywhere and endometrioma removed. Some relief from surgery and coil but now having more problems again especially with my gut. I'm waiting for BSGE appt and have appt in January with general gastro. I was referred to gastro in October, was on an urgent wait list but told even with that the current wait time is 7 months! I went to PALS detailing my symptoms & impact on quality of life and I got a call the very next day offering me an appointment for early January so in my opinion it's well worth going through PALS.Sick of the long waits, knowing in the mean time things are only getting worse inside.

My post op follow up was awful, it was with someone else who I've never seen before and wasn't the surgeon who operated me. He gave me false information and just tried to fob me off but I challenged this, went through PALS and managed to clarify/ get some answers with my usual gynae Dr who did my surgery. I still had questions and concerns I didn't feel satisfied with so I've been referred to BSGE centre now, been accepted and just waiting for an appt.

Everything medical just stresses me out so much because of how they treat us. Fed up of it but just got to keep pushing x

[Ennob in reply to KittyTherapy]

Having to push and advocate at every step is so exhausting. Good luck and all the best!

[Ennob]

I'm so sorry about this I've had a similar experience, except I was on evra fontraceptive patches months before my surgery and I was also never told that being on my period would affect anything, tge only time that should is with gynae swabs (for vaginal exams not for endo) also assured at every step if endometrosis was found it would be treated so im sorry also about the way you were treated with the laparoscopy ik its scary and personally my worst fear was also waking up with no endo diagnosis. and I had felt the same when I woke up twice I was told "good thing no endo" and that everything was really clear and healthy and tbh I still cry and get upset about it (neatly a week post op). I would definitely recommend talking to PALS and getting back to ur GP when you can, I was discharged with no follow up and given no recommendations other than the coil (whixh I've been told by the gyno that does not manage pain symptoms). I've had alot of research on deep endometriosis(only viewable via MRI).

Being in a similar place I can't offer much advice but please and with how long endo diagnosis takes push back at any opportunity to being fobbed off and push for scans, I know people who have had multiple laparoscopies in search of an endo diagnosis and as an idea there is a seatchable database for endometrosis specialists in the UK by hopsital, perhaps talking to PALS and seeing about referrals? I'm very sorry about the position you've been put in and the treatment you've received.

(Apologies for the very long reply)

[Emmlou98 in reply to Ennob]

It’s honestly so upsetting isn’t it. I’ve cried every single day and it’s a week post op for me today. But it has meant that I’ve pushed forward with trying to get answers. I’ve contacted the hospital to get my follow up sooner and also request all my notes from gynaecology. Plus my GP wants to speak to me in the new year. As for PALS I think I’m just going to wait until I see the consultant if I get an appointment. How are you managing with it all?

As for the coil, that’s the thing I’m most worried about. If it works, it’s obviously a gynaecology issue which will confuse me even more. And if it doesn’t work, they’ll just try fob me off even more despite it being proven that it doesn’t work for everyone. This is one of the things I want to ask my consultant.

I actually know a few people who went through the same hospital as me and never got their diagnosis until they went private. Only thing is the endo specialist at the private hospital is my consultant already through the NHS so just depends if he feels the laparoscopy wasn’t done properly by the lady.

Please keep me updated with how you get on. Maybe we can PM?

[Ennob in reply to Emmlou98]

I'm with a similar mentality too and we'll done for getting ready to gather everything together.

And honestly it's a struggle to not let yourself be fobbed off but we try! And yeah I'm hoping for another round starting from GP again before I do go private.

Sorry about having a good specialists too just for that to be turned around but you are so right to keep pushing.

Same to you and please do keep me updated and feel free to send a chat over!

[Slourah81]

I came off the rod 3 year ago, as turning 40, my partner and thought we try one last time for a baby. when my periods kicked back in, they where just awful.. I could even stand tampons & my smear test I nearly went through the ceiling in pain so as you can inmagin the baby trying process was just not the most pleasant of times for us.. after several appointments also suffering with bowel and bladder issues too.. go referred to gyne too year for appt and another 18 months to my surgery. Thank fully all pretty quick considering the wait some of you have had. I was put back on the pill to stop my bleeding again.. soo hope of baby vanished. I come to peace with this I have a fur baby.. kids were obviously not meant to be for me.. over my wait for surgery I back and forth with bladder and bowel issues. Every time I was told possible due to Endo , we will wait and see what surgery brings. 10th Dec day of surgery. No Endo found super healthly womb tubes and ovaries.. but one inflamed bowel staring right at you.. in middle my images. Nothing they could do that day. Stitched up sent back to gp for further investigation. I am furious the never investigated this separately and used my potential Endo as an excuse. No I am back at square one starting fresh treatment and investigation all over again.

[Ennob in reply to Slourah81]

I can't believe that I'm so sorry for you. Being put back at square one is so defeating and no results is honestly anger inducing. I hope you continue to advocate for yourself and I wish you all the best in every journey <3