Discharged from hospital today

Hope someone can help,

I was diagnosed with PCOS when I was about 14 and suspected endo aswell but they said I was too young to have the laproscopy to confirm this. Because they were pretty certain I had endo they told me to take the pill continuously, because my pain was so severe they said I never needed to take a break.

I was admitted to hospital saturday night with the most agonising pain that had lasted all the week before I was seen by a gyno who said he suspects endo and will refer me for the laproscopy. Since then I felt very ignored in hospital, one doctor told me every woman feels like it and it's completely normal, I never saw the gyno again and I felt all he had written in my notes had been completely ignored by everyone else. I've explained numerous times I'm finding it so hard to move, ive missed so much work and day to day life is hard when everything takes 2x as long. The painkillers dont seem to do anything other than make me dreadfully tired and inactive, despite this they sent me home today saying I need to start taking my pill a different way (meaning I'll have my first period in 4 years) theyve told me it will be very severe but have just given me cocodomol for the pain which I have explained doesnt seem to do anything. They said theyve arranged a scan for me next week, this will be my 3rd and then discuss a laproscopy but I'm feeling so anxious about whats to come. I feel very ignored and alone and as if I've been fobbed off for the past 6 years. I've got no idea what to do about the pain as nothing at all seems to be working I can't go on with the pain being how it is but feel very reluctant to go back to the hospital as I felt they just wanted to get rid of me. Have any of you been in a situation like this? I'm not sure what my next steps should be as theyve denied me the laproscopy twice because of my age but I can't continue to function with this pain

Thanks

Hannah

4 Replies

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  • Are you seeing a gynaecologist or are these hospital visits to A&E?

    I know the 1st period will probably be a severe one. It will not be pleasant but it won't kill you and you will get through it. It is important now you are chasing a surgery to have your endo active so that the surgeon who operates on you has the best chance of spotting all the locations of endo.

    If your GP is refusing to refer you to a gynaecologist and you are employed still, then I would urge you to consider bypassing the GP and making a private appointment with an ENDO gynaecologist. Go direct to a surgeon who does both private and NHS endo surgery, not a bog standard fertility gynaecologist which most are.

    If after the private consultation, the endo expert agrees that a lap op is what is needed (and it sure sounds like it) then ask him to arrange that for you on the NHS.

    The surgery side of things is costly - you can do that privately if you can afford to, or have private health insurance, but we have seen on this forum many cases where after the initial private consultation, suspected endo cases have then be referred back to the NHS.

    Consultations cost up to £300 depending on the consultant, but it really can get the ball rolling so much faster than relying completely on a GP referal to a gynaecologist, and 9/10 you end up not seeing someone who is an expert on endo for the 1st diagnostic op.

    Ask your GP for Diclofenac or Naproxen pain killers - they are stronger than co-codamol and they are not addictive - but do have side effects. I find they make me very sleepy but they sure can tke the edge of endo pains and allow you to have a good night's sleep.

    Hopefully with a decent endo surgery clearing out the existing troublesome endo and any cysts you might have you will find it much easier to cope afterwards with work and life in general.

    Keeping periods at bay is still a priority after a surgery - so you might want to consider using the op to have a mirena coil insertedwhile you are under general anaesthetic.

    Much lower dose than pills - and no tablets to take and lasts up to 5 years of stopping periods.

    Just forget it is there and get on with living again.

    It is not an instant period stopper - it's a gradual one taking around 4-6 months to completely stop

    periods. it's a lot more convenient than pill popping.

    Not everyone has a body that can process co-codamol or the codeine based pain killers. If you find the drug is not effective you could be one of the people that has a negative response to the drugs.

    Have a read of the following article which explains it

    dailymail.co.uk/health/arti...

    Neither Naproxen or Diclofenac are codeine based which is good news.

    Diclofenac aka Voltarol is available over the counter at a lower dose than prescription strength, but for cysts and endo - you will likely need the prescription strength of the drug to make a dent in the pain levels. Ask your GP for a prescription - well worth having something stronger in the cabinet for those days when you need it.

    Don't give up on the hospital or the GP, keep pushing for a diagnostic surgery and the treatment you might need. It can be a mammoth struggle getting to the point of surgery for so many of us, and all I can suggest to speed things up is jump the queue by paying for a private consultation.

    I m well aware that we shouldn't have to resort to such tactics, we have after all being paying National Insurance contributions for years so we can have NHS care, but demand is so high and there are not enough specialist surgeons or scanners to accommodate every one in a timely manner.

    If you weigh up the costs of a private consultation compared with the cost of the hours you can't work productively and are waiting for NHS appointments - it works out to be good value for money.

    If you have more thanone GP at the surgery -check online to see if any of the other GPs specialise in women's health issues a book to see them instead of your usual GP.

    The women's health GPs are likely to be much more sympathetic and clued up on endo and thereby willing to support you with the right strength of meds too. Very best of Luck obtaining a diagnosis and getting treatments. It isn't easy to find someone who will listen and help, for so many of us. All very frustrating.

  • Thank you so much that was all so helpful. I went to a&e saturday evening, was admitted then seen by the gyno there. I couldn't fault him at all, but like I said felt from then on no one read his notes.. Going to go to my GP tomorrow and really push for something to be done I've written a pain diary which I hope will help. Otherwise I think im definatley going to have to go private, like you said, the money I'm loosing from not being able to work is worth the private health care.

    Thanks so much, Hannah

  • If possible definatly look on the bsge website for your nearest endo centre and book in for a consultation with somebody who understands !

    Good luck. X

  • If possible definatly look on the bsge website for your nearest endo centre and book in for a consultation with somebody who understands !

    Good luck. X

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