In Agony Waiting for Op

Hi All,

I've been diagnosed with a large Endometrioma on my right ovary which was 10 by 7 cm back in April and i'm sure its grown since then!

I've seen my consultant and will be having a either a Laparoscopy or Laparotomy to remove it, although with the size of it he thinks it will more likely by a Laparotomy but won't know till he starts the op. My problem is he told me I might be looking at a wait of up to 40 weeks!!!

At the moment i'm in pain at least 3 weeks out of 4 with the pain being unbearable when i'm on and when i'm ovulating, so the thought of having to wait that long agonising. Especially as the reason I found out I had it was when i was having test for IVF so obviously that's now on hold until the cyst is removed and I turn 36 next month and my clock is ticking load and clear :-( :-(

I'm just wondering if anybody else is having wait that long I live in Wrexham and will be having op at Wrexham Maelor Hospital) or if you have any advise on maybe spending things up without going private as i can't afford that. I've asked to go on cancellation list etc but not holding out much hope there.

Feeling really low at the moment with it all so to know there are other people going through the same thing is a big help xx

11 Replies

  • I would keep ringing the cancellation list yourself on a regular basis- worked for me in the past

  • Oh....Hun I feel your pain...I too am awaiting and am in blimin agony. Went to a&e today as pain so severe it scared me it was something else it was so bad....sent home with strong painkillers :-(

    I've been on the waiting list for 4 months a d have my op in 3 weeks...I'm in Oxford area

    Hope you get a cancellation and that you get sorted fast!!!


  • I get so angry when I read things like this (about you being in excrutiating pain due to huge endometriomas and just being shoved on a ridiculously long NHS waiting list!) I have been in this same situation twice!

    I'm so sorry you are suffering like this. I really had to fight to get my last surgery within a reasonable time. So I will share what I did... It might help?

    First I rang the surgeons secretary and asked to be put on the cancellation list (which they automatically did apparently with everyone!) then I rang a few times to see how the list was progressing (I did end up annoying the secretary a bit, but felt I had a right to know)

    Once I found out I would not be having surgery within 18 weeks from my GP referal (which is the current longest wait the NHS is supposed to make you wait for treatment....... Please google the the 'NHS patients right to treatment') I emailed and then rang and spoke to PALS..... Which is the Patient liason Service at the hospital you are attending for treatment. I said how my surgery was going to be a longer wait than this and said I would be looking at being reffered to another hospital with shorter waiting times (you can ring round to find out the waiting times of hospitals nearer or further away)

    I also stressed my pain levels, and said I was close to being unable to work, and had already given up all social life as I simply could not function.... And that I would loose my job if I was off sick for months. Also fearing for my fertility due to my ovary being swamped with a rapidly growing endometrioma.

    This prompted them to get back to me saying that I would not breach the 18weeks, they promised I would have surgery before this!

    I did have to ring up again when the surgeons secretary said they were wrong to promise this (rolling my eyes!) and literally that somehow made my surgery happen just 2 weeks later.... 17 weeks from my initial referal.

    So Defo read up about the NHS waiting times and get in contact with your PALS. I know women who, after this, have got their MP involved successfully as well.

    If you are worried about the cyst growing, you should be able to get your GP to arrange a scan. If it has grown bigger, you might be able to get your GP to write to the hospital saying it's more urgent you get surgery sooner? My GP was going to help me by doing this.

    Message me if you want any other info...... I just hope you can get surgery much sooner than you expect. I have had good relief from the removal of endometriomas! (Largest was 10-12cm, and they managed it via keyhole)

    Good luck and sorry it's been such a long post! (I hope you are still awake reading it)

  • PALS- Patient Advise Liason Service...... Sorry, that's what I meant!

  • Thanks for your advice, I contacted the hospital who told me the waiting list is now 52 weeks!!!! And when i mentioned the NHS Wales guideline of 26 weeks from referral to treatment, she said that is just government guidelines and not all operations can come within that! Oh and to rub salt into the wound my operation is only down as a 'routine' op anyway! Well I've been to see my GP today and he is writing a letter to my consultant to ask if my op can be brought forward due to the size of the cyst and that it is still growing and the amount of pain it is causing me and the way it is affecting me standard to life at the moment. So fingers crossed they will bring it forward.

    Flowerpotts - Its good to hear you've had good relief since your cyst was removed and that they managed it through keyhole. That has given me hope that mine might be able to be done though keyhole as well.

  • Hi Welsh-girl!

    Please have a look at my profile, and our website - If you join our FTWW Facebook support group, or contact us through here or the website, hopefully we can really help you. :)

  • Thanks FTWW_Wales will have a look now.

  • Great!

  • Hi... I found out recently that I have an endometrioma attached to both ovaries behind my uterus. I am currently waiting for my op, I've been told 20th September but I was already under a consultant at Sheffield. I've just been told to try and manage my symptoms as best I can until then. I was 4 days into a new job when I had to go to A&E with abdo pain and I've been off for 3 weeks now. I'm also feeling pretty low at the minute, scared of getting my period (which = more pain!) scared of losing my job! scared of what will show up from the op. You're not on your own. I know endometriosis is such a lonely illness and because it's invisible I feel as though I need to get a big sign or a bell or something... We shouldn't have to prove how bad we feel and I refuse to do that anymore. Keep your chin up, you could ask the hospital if there has been any cancellations - I'm not sure how it works at Wrexham. Remember to rest, you need it. Thinking of you xo

  • Like flowerpot said just keep phoning the secretary at the end of the day they control the list. My mum and I both kept phoning her to see where the list was at. I was told 6 months and there was just no way in hell I could wait that long, I have pain 3 weeks out of 4 and its unbareable. I can't leave the house some days. We just had to keep going at them about how much pain I was in and if they could give us a better idea of waiting time. They eventually told us October/November but not to hold them to it and then I got my pre-op appt through for the 7th September so hopefully my surgery date will be through soon. I hope you get some help soon X

  • I am so saddened to read of all of these posts of people suffering while waiting a very long time for operations. Unfortunately, I am not surprised given my experience. I am waiting for my third operation and I have been on the local hospital's waiting list for over 6 months now, having had my pre-assessment appointment on 03 March! My symptoms are getting worse and my mental health is deteriorating. I believe I am on the verge of losing my job due to too much time off because of my endo and mental health problems.

    For some reason the hospital put me on the list as a routine operation, even though my symptoms are far worse than before my previous operation (which was classed as urgent).

    I believe I was put on the wrong care pathway at my local hospital so I went to my GP who kindly referred me to a specialist centre but...the wait is even longer! I've phoned the Consultant's Secretary who wasn't terribly helpful and the only thing she seemed prepared to say was that she could confirm I am on the waiting list!

    I empathise with you. It is simply unacceptable that we are waiting so long for much needed treatment.

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