Only now am I being taken seriously

Hi, I've had 2 laps, days 2 and 3 are the worst. It takes about 2 weeks to recover.

I had lap 1 end of June 2013 after severe pain and lack of periods. I had a scan and a cyst was found on my left ovary it was 9cm diam. In fact it had engulfed my ovary. I was lucky to keep the ovary. There was no follow up!

You get to know your body and gut feeling

At the beginning of this year the pain was back, again a visit to the gp, referred for a scan and back to the gynae.

It was said before I had an endometrical cyst but nothing more.

I went for 2 scans before seeing the gynae. 1st - cyst where last one was and another on the right ovary. 2nd scan The right one had collapsed but the left was bigger at 5 cm.

I attended my gynae apt and was advised to treat the pain by taking laxatives for 10 weeks !- movical - hilarious. Of course it didn't help just made the stools loose and unpredictable - just what every girl wants! I entered the movical for 3 weeks and stopped taking it - I had had enough.

I cut out carbs, majorly pasta, bread and pastry. It was extremely hard to do but helped the bowels.

I returned to the gynae and was given option of another scan or another lap. I said I had had enough and just get it out.

The results weren't what I expected - confirmation of having endometriosis. It has turned from a cyst and a gentle pat on the arm, slight disbelief from docs that it was actually nothing to a declaration of me having stage 4 endo!!!

I have to go back in 4 weeks for a follow up, I have to have a bigger op and see a specialist. My consultant has hit that wall of realisation that there is actually something wrong. I have endo nodules throughout my pelvic area. On my bowels, vaginal wall, behind my womb and on my ovaries. They are hoping this bigger op will be held at my usual hospital if they can't cater for it, it'll have to be at another one, I don't know when or where.

It's a mix of emotions, upset it has come this far and what does the future hold and another of relief that I'm being taken seriously, it has been confirmed and something is going to be done about it.

I'm taking it week by week. I'm currently planning our wedding for next year and we're buying a family home. I'm hoping to be able to have a family, don't know if I can or can't we'll deal with that as it comes.

My last laparoscopy was last week - 16 September 2014

Anyone else had this experience or stage 4?

1 Reply

  • Loads of us on the forum are stage 4... because it takes such a wretched age to get diagnosed.

    stages 1 and 2 are the most common, and do not involve cysts.

    stages 3 and 4 do involve cysts and most of those will be stage 4,

    or under the UK classification system this is called 'severe' endo.

    The Uk uses terms minimal, mild, moderate and severe to describe endo and this isn't much use to the patient, but it does determine which level of surgical expertise is required to tackle the endo. So it is a staging system for the surgeons more than it is of any help to patients.

    This basically means at least one endometrioma cyst of any size, scarring and adhesions from endo lesions scattered round the pelvis, and deep infiltrating endo somewhere (and that usually means the POD or Pouch of Douglas) behind the uterus but it can be elsewhere

    It requires complex surgical training to do these ops, and is beyond the expertise of a general gynaecology surgeon's training at med school. They are trained to handle minimal and mild levels of endo as routine.

    There are ladies at stages 1 and 2 who will be diagnosed with surgery and have all their existing endo removed and that's that - they get on with life again. It's the ladies struggling with endo that tend to be active members of this forum and its a fairly safe bet that most of those will be severe stage or have additional medical complications to deal with too.It's your choice now who does your op and where.

    Have a look at the list of accredited endo centres in the UK and find your nearest one and print off or write down the details and ask your GP to refer you to that endo centre.

    (the ones listed in Elland and Cheadle are private hospitals so ignore those if you are NHS)

    You will see that these endo centres not only have gynaecologists who are endo expert surgeons but also have endo colorectal, endo urology and endo pain specialists on their teams.

    And Endo-nurses who will follow up your case for a couple of years after surgery.

    There are also several hospital endo centres on the verge of full accreditation.

    listed on the provisional list. the list is only updated each january, so they may well have qualified already by doing enough RV (recto-vaginal) endo surgeries in the year so far.

    So if one of these provisional centres is more convenient then you could ask to see them too.

    They are all following the same protocol for severe endo cases and must report them back to the BSGE to maintain their status as accredited centres.

    It could be that your local hospital is already an endo centre, but if it isn't then you'd be better off traveling to one for your next op and getting the best available surgery and after care you need.

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