Endometriosis UK
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Waiting List

Went to see the GP yesterday and was referred to Gynae assessment centre as had suspected burst cysts... Consultant didn't seem too concerned nor sympathetic for the pain I was in.

By chance, the specialist I've been waiting to see (following my MRI, which has shown endo on my left side) had a cancellation so seen him yesterday. Think I thought the appointment would give me some answers, make me feel better... If anything, I feel worse.

I've been told there is a waiting list until October just for a diagnostic laparoscopy. I then have to have a follow up appointment to discuss what's been found and then go on another waiting list if more surgery is needed (providing it's safe to do).

Now seriously considering going private - can anyone help? Thanks!

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I had a 4 month wait for my laparoscopy. After I self referred myself to do a different consultant after not being takencouraged seriously so I guess you could say all in all I waited 9 month for my laparoscopy. Thankfully the consultantI saw was so sympathetic and mortifiedthat I hadn't been referred for one sooner.

I totally understand your upset as if had the money I myself would of gone private. If you let them know your available for short notice cancellationso this may help it didn't in my case but let them know you are!.

I had my laparoscopy end of march and had my fallopian tubes removed they sent me a letter a few weeks later to say what they had then found and had my follow up in June to discuss next steps. I hi k whatever option you will have to wait. Maybe not as long as of you went private. But the choice is yours.

Please let me know who you get on xxx

Suzie

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Hi Suzie,

Thanks for your reply. Can I ask were you aware your tubes were being removed prior to your lap?

I have multiple cysts in my left fallopian tube and it seems like my ovary is affected too.

Thanks, Vicky

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Vicky, yes as the consultantamd anesthetist came to see me before I was sent down we had discused what she was going to do. I had typed up a letter for her to read of my background for the last 2 years so she had an idea of my daily struggles and problems. So she saidoesn't she would go in and if endo was found she would treat and that she would remove my tubes and then once there gone we know that I couldn't then have it return to my tubes if they weren't in place anymore. I didn't need them as I was sterilised in June 2015.

I feel that I might have endometriosis on or in my ovaries as the pain is still there and it kills me everydayour. It's so frustrating.

I feel for you but hope you get sorted.

Xx

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That's great they had agreed to do that - my specialist has made it quite clear, nothing will be done until after my diagnostic lap. I just don't think I had appreciated there may be 2 surgeries to recover from.

I'm sorry to hear you still have pain everyday, have you decided how you are going forward? If you don't want to post, happy to chat via message too. Thank you.

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Maybe at your next appt you could ask why she has made the decision not to do anything! If you suggest that if there is endo there you would feel better having it treated while your under as then it's treated and it saves you taking up another appt that somebody else could benefit from and just mention hr waiting time and stuff. If you go in with a bit of an idea of what it could be and what options there are she may think differently as she will know you have done your research. As multiple surgery's can cause adhesions which won't help either.

Regatds going forward at the minute I'm hoping to keep on the coil for as long as I can. If I can get to November at least then I've done the 6 months advised. If the pains have decreased and more bearable or have gone then I will stau with the coil. Failing that and I don't see any improvemention I'll have it removed and go on the prostap injunctions again.

Xxxx

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He was quite clear the other day that it was simply diagnostic - It seems like the urgency the process started with seems to have reduced now they are pretty confident it's endo! So frustrating!

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Hi Vicky,

I just spent three days last week in hospital due to a suspected burst cyst and the pain subsided slowly but I have woken again with it bad today. Fearing that my large 44ml ovary they saw on the ultrasound may have more cysts in it😢.

Anyway they discharged me without any further scans or real guidance. I was diagnosed with mild endometriosis in 2010 but haven't has surgery since, my only problem within the last year has been heavy period and low iron. I kind of guessed something was going on inside but wanted to delay more surgery as wasn't in pain. Well looks like my luck ran out and now in lots of pain after this burst cyst and scared it could happen again with no warning!

It doesn't appear they have put me on the referral list at the hospital, so now just waiting to see my GP, to start the long process off and that is just to see consultant and not even the laproscopy op which I know will be next stage. So I feel your frustration.

May I ask how you got to the Gynae assessment unit? Did your GP refer you on the day?

I noticed the Gynae ward I was on had an assessment centre attached to it but never known of these before. To be fair though these poor ladies appeared to only be seeing the same junior doctor I was seeing who had no interest or specialisation in gynae but was purely on their rotation of wards!!!

I am in East Kent and seriously now considering going private but that's a minefield too, as if I am paying I only want the best and I don't know anyone in my position who tried them.

It's just so frustrating and stressful 🙃

Laura

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Morning Laura,

I'm sorry to hear of the pain you are having. I was admitted a couple of years ago with suspected appendicitis - was supposed to be getting scanned but then the surgeon decided to go ahead and do surgery because of the symptoms I was experiencing... turns out my appendix was fine, but I had a burst cyst. Endo wasn't mentioned.

I started having pain again earlier this year and have been told an MRI shows endo on my left side. I got to the gynae assessment unit as my GP asked me to attend there on Monday when it was thought my cysts had burst. I still don't know if they have as to be honest, they didn't seem too concerned. The only thing they said was that if I needed emergency surgery, things may be removed by a general surgeon - whereas if I wait, the endo specialist may be able to preserve what is there.

I am guessing in my case I may need a diagnostic lap and a follow up operation due to what is already there blocking my left tube. I have no idea how much that is likely to cost going private but I think I need to at least find out. Best wishes to you.

Thanks, Vicky xXx

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Hi Vicky

Keep pushing your GP, the more visits you make to complain about the pain the more they will take notice. I was started on Co-codamol and paracetamol, which were useless, I persisted and am now on a cocktail of pills. Be aware that all these pills come with their own side affects. I've already had kidney tests and am now on daily Antacids. You can also try asking your doctor to send a recommendation for an urgent referral / appointment, but I believe they can only do this for you once.

The same thing applies to the clinic, keep calling to see if they have any cancellations. If this does not give you a result, check the web for local clinics, see if any of the Gyno specialists have both private and NHS clinics. If you are able to get a private consultation with one of them, ask them to then see you as an NHS patient.

This is the route I had to take, I have to say I don't want kids and am happy to go down the hysterectomy route. At the private consultation I was started on Prostap, in August I will see the surgeon for the 3 month catch up, then hopefully I'll be on the surgery waiting list. And as Susie says, I will be telling them I am available for short notice cancellations.

Best of luck x

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Hi there,

I've been given co-codamol and paracetamol recently - been on mefenamic acid for years due to period pain. I believe the urgent referral was already made back at the start of May when high levels of CA125 were found.

I wouldn't have thought of asking at a private consultation about being seen as an NHS patient, would I not still be put to the back of the queue though?

Good luck to you too x

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Morning Vicky

I was given an urgent referral from my original (locum) surgeon in January, after getting no response for weeks I eventually discovered my letter had never been sent after the locum left. The letter was then drafted and sent but never received at the Gyno Clinic. The hospital referral letter was sent 3 times to another hospital. By this time I was in agony, I've missed nearly 7 weeks of work to date this year, I'm on Tramadol, Naproxen and Gabapentin etc. In the mean time my GP sent an urgent letter to the Gyno Clinic asking them to see me sooner. I was eventually given an appointment to see a surgeon in a neighbouring county, fortunately I got a private appointment before this, and now I have a course of action.

I can't see any reason why you would be put to the back of the queue. As long as the surgeon you see has both private and NHS clinics, then I can't see the harm in asking (during your private consultation) if he will see you going forward as an NHS patient. I did, and my surgeon was most agreeable. I was started on Prostap that day, and my following injections have been administered by the nurse at my GP's surgery. I paid for the first injection at the private clinic, the rest have thankfully been on the NHS.

I guess what I am trying to say is, if you will do anything to get rid of your pain, keep pestering everyone, chase for cancellations, get a private consultation, whatever it takes. Having a family member or close friend to back you up always helps. I wish you luck x

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