Was I lied to?

[Mae20]

My op went awful, I’m left feeling so confused and drained. They discharged me yesterday at 8pm with NO pain relief so I had to go back in today and now have an infection. I’m confused with my results as well, I had such a bad experience. Basically I went private for my internal scan a few months back because I wanted an endo specialist. He said he could see a shadow on my ovary and endo growing in my uterus and vaginal wall. So after that appointment I decided not to go private for the operation as I couldn’t afford it, when I turned up for my operation yesterday on NHS the male staff were making jokes about me not being able to afford the private op and saying my student loan obviously couldn’t cover it. I know I’m sensitive but this op was a big deal for me and everyone was just making jokes about me transferring back from private to nhs cause of money reasons. On top of this I woke up and was told there was no endo and only some old blood which had leaked out of my tubes. I’m so sure I have endo as this is what was seen on my internal scan and I have almost every symptom! Someone please give me some advice because I feel like my op was for nothing and I’m back at square one. What shall I do

[Lleighs89]

I would personally get a second opinion elsewhere as I had a gyne who refused to operate instead told me to take birth control continuesly for 6months straight to control the bleeding. I saw requested a referral to an endo specialist in a different town hope this helps a little

[Mariapppp]

Hi love it’s just so late for me in Canada but I will reply in the am. This exact thing happened to me last week and I’m still reeling still so upset to have not a clear diagnosis

[hm89]

I’ve had a mix of private and NHS care too. Its awful they made you feel bad about this, it’s your health and if you decide to pay to get quicker treatment that is your right! A scan is just a few hundred whereas further treatment could be thousands! From my experience, I didn’t think you could diagnose endo from a scan (just cysts), just from the lap. Private doctors will always find something that requires further treatment to keep the money coming in. My NHS surgeon said the ‘old blood’ thing to me too. This is retrograde menstruation and VERY VERY PAINFUL. It is also the main cause of endometriosis, you may just not have any adhesions yet.

[Mae20 in reply to hm89]

It is, I did wonder if the specialist gynae has just said that so I go private. But at the same time I do have something on my vaginal wall which is very painful and causes me to not be able to wear tampons or have sex. Every symptom I have links to endo so I feel that being woken up and being told ‘great news you are all clear’ wasn’t actually positive for me. They said there was a lot of this retrograde blood and I’m not shocked about that, is that actually a cause of endo? I dont know if that explains the pain in my vagina though? To be honest I’m going to wait till I have healed and pay out for another specialists opinion because I don’t feel this surgery was beneficial and gave me any answers.

[hm89 in reply to Mae20]

Did they give you an internal exam? That sounds really horrible, keep pushing though and you’ll get the right help eventually!

[Lushbookkitty]

I’m so sorry you had this experience. Endo definitely can be seen on a scan, but only by an expert.

They had no right to speak about you like that, please consider speaking to pals - patient liaison in the hospital, to give feedback or complain.

I was also told nothing found after nhs lap. You are entitled to a second opinion on the nhs, and I’m currently waiting for an appointment with an excision expert I chose. Unfortunately it’s about 3 hours from where I live, but it’s where my sister lives and it’s her endo doctor. You can research and ask your gp to refer you anywhere in the country you want on the nhs xx

[Hannah0091]

Hey, they can not make jokes about such private and personal circumstances it’s very unprofessional and not what they are there for. Not to mention wildly inappropriate. Your finances is non of their business. Personally I would complain about this.

It does sound like retrograde bleeding to me too as it’s bleeding to the body backwards maybe watch a video about it.

If u have documents or info I would put them all together in your folder and go back to your GP or if you can, private appointment and go from there. Explain all the symptoms again and if they didn’t find anything it doesn’t take the blood they found away nor the pain and the other symptoms. They have a responsibility to help you at least manage your symptoms to be able to live life. So I would put it back on them. You can always request a double appointment with the GP to have more time so u don’t feel rushed. Hope this helps a bit x

[Mae20]

Thank you everyone for your replies. I’ve got all my documents and the written report from the private doctor - in this he says he can see endo on my vaginal wall, a shadow on my left ovary and endo on my uterus. Personally I believe what he found as everything he explained was where I was getting the pain, just a shame that the nhs surgeon didn’t spot any of this. When I asked her after surgery about the pain in my vagina and I told her I can’t have sex or even use small tampons, her response was ‘I think it’s a case of using loads of lube’! The whole experience was unprofessional and that’s probably the worst advice I’ve ever received since going to the docs about my pain. I’m 20 years old, never had a child or any issues in that area until recently it started to get worse. I was told by the private doc that it’s because it had grown more but now being told I’m ‘too tight’ or having issues ‘getting wet’ I know this is tmi but I’m mad that a doctor thinks they can say that to me after everything I’ve been through.

[Music1]

It's a tough one. I was diagnosed as needing surgery to start ivf and given costs if we went private - to remove ovarian cysts, clip tubes and check for endo etc. However, we were told this was a simple opp and they suggested we take paperwork back to the NHS with their findings and get the opp done with NHS to save money for private IVF. We spent a year going back and forth with NHS as my consultant said I didn't need any surgery. When she finally agreed the day before I had a pre op - checking weight, height, my bloods etc. The woman/ nurse said to me...."are you really having your ovaries removed because you're still young". I said no - just cysts and she said that's not what it says on your paperwork they made you sign. When I spoke with surgeon she said "I'll remove whatever I need to it's up to me". I cancelled the surgery straight away and went back to private - they found Endo with a biopsy and stage 4 Endo. The NHS were so rude and dismissive joking with me and my other half as well - regarding costs, can't afford it then.... there's nothing wrong, why do you want a child at your age etc". Glad I went private. Sadly the NHS filled me with no confidence. Am so sad they treated you like that. You do need a second opinion, and they should have given pain meds or you could have got some straight away from GP after. We go through all this heartache, pain and simply want answers or some relief we shouldn't have to put up with their joking, and no big deal attitude. Hopefully they will give you a follow up consultation and go through things with you. Get a second opinion, look after yourself, rest, repair. Best wishes and hugs x

[Mae20 in reply to Music1]

Sorry to hear you had such a bad experience. Maybe the nhs over all hate the fact if people switch from private to nhs for ops I don’t know. I’ve come to the realisation that if I want this pain sorted and the endo to be found then I’ll need to pay for private xx

[Music1 in reply to Mae20]

To be honest I think you're right. Whenever I've taken any 'Private letters' or findings to the NHS they've always dismissed them, scoffed and said they need to do their own tests etc. You'd think they would be more happy I was saving them money by paying for own scans and everything else. The NHS have pretty much ignored everything I've given them. I think if you want 'real results' and the truth, sadly private is the only way to go. I'm kicking myself for not signing up to something like BUPA or whatever earlier when I first started getting pain. I was told for maybe 10 years on NHS my Endo was IBS and period pains. The damage it had done inside. Wishing you all the best xx

[Mae20 in reply to Music1]

How did you eventually find out you had endo?xx

[Mae20]

Thank you for your advice, when I got my surgery date I felt so positive. I never would’ve thought the nhs would dismiss the findings from my private internal scan. Just wishing I had gone private for the op cause then I know everything would’ve been found and removed, not just the blood they found. I wouldn’t say my private doctor pushed me to go with him, but he did say that nhs would be a long wait and he was concerned that it would grow even more. I guess I always thought that the only difference between private and nhs would be the actual care, not the operation and findings themselves. I guess I’m back to square one again xx

[Peebles2sarah]

Unfortunately an internal exam can’t show endo but this does not mean that you 100% don’t have it. My first surgeon told me there was no endo just a lot of scar tissue (with no none cause) and the second surgeon said there was tons of it. I think some surgeons just don’t understand how to recognize it if they are just general OBGYNs.

[Mae20 in reply to Peebles2sarah]

I went private for my internal scan with an endo specialist, he said he could see a shadow on my ovary and endo on my vaginal wall and uterus. But you are right I guess we never really know what is fact and what isn’t. Hopefully I’ll figure it all out soon xx

[Peebles2sarah in reply to Mae20]

Was it an internal ultrasound? If so this doesn’t see endo so not sure what they meant! However, your pain is valid and they will need to get to the bottom of this. Good luck