Struggling to get help

Hi! I was diagnosed with endo last year. I had a laproscopy. They said it wasn't serious so they discharged me. I've never been able to talk to a gynae about it. I did try but she said that as far as she is concerned I am not her responsibilty.

It was better for a while but It is back with venegence, since September. Constant bleeding, constant pain. I feel like i have no life, the pain reguarly makes me ill, vomiting, I faint/pass out and it is affecting my attendance at work. It's affecting my friendships and relationship. I can't do anything, I am exhausted and in pain. My mood is really low.

My doctor finally agreed to refer me again but the waiting list is 8 months long. It is getting worse not better. The thought of living like this for another 8 months is really getting me down. They prescribed dicoflex but I'm not too sure. Do I take this everyday?

15 Replies

oldestnewest
  • Go back to your doctor, and if you get no joy, go to a&e tell them your not leaving until they at least check you over and give ct scan ect, good luck and don't give up, if it's stoping your life on a daily basis you have every right to be persistent and request urgent check ups, xxx let me no how it goes

  • I would advise you to go back to gp and see if they can refer you somewhere else that can see you sooner. It's choice based now so you can choose where to be seen. ive just been re referred as I'm experiencing difficulties after being stable for 7 years. My gp chose the gynae who could see me the quickest. May be worth a change also as it doesn't sound like your last gynae was very sympathetic.

    Going to a and e is also another good option of pain is severe as they can check you over and do a scan etc.

    Hope you get something sorted soon. X

  • Thanks for your help. I will just keep on at my GP and head to A & E when its get bad. Unfortunately that is the shorter waiting list. There are only two consultants in my area and one of them works in Scotland as well. I'm from Northern Ireland. They have had to close a lot of units here.

    No she wasn't very sympathectic. It was an awful experience. I really feel like I have no support. A doctor did come and speak to me after my surgery. She said it was endometriosis but she didn't have the time to talk to me about it. I ended up putting in a complaint about how I was treated.

    I'll keep you posted xxx

  • Hi, I'm in Northern Ireland too and have had a similar experience with being taken seriously and also getting someone to give me proper information. I had lap at the Mater in Belfast and after the procedure the consultant spoke to me there and then and told me he had found the endo and removed it but I had no after care and nothing since. My symptoms returned after about 8 months. I had a real struggle even being referred to consultant in the first place because my GP didn't think I had endo depsite me saying myself that I thought I had it more than two years before I was diagnosed. Having had the northern ireland A&E experience a couple of times in the last few years I wouldn't recommend it without an emergency situation, you will end up waiting for hours and hours (9 hours was my last wait) while you sit in a crowded waiting room in pain, it's an exceptionally unpleasant experience and they won't treat you in A&E (because they can't) they will refer you on to gynae. You must keep pushing your GP, if you don't get anywhere switch GPs. If you feel emotionally worn down with it all, then you could maybe consider taking someone with you to the GP who will help fight your corner. Sometimes it's difficult to do it for yourself when you are so low and in pain - take your feistiest friend with you lol!! I do think the services in NI are poor, and the news recently only confirms that. If you are in a position to I would advise you to look into private treatment which you will get straight away and get the proper attention. But if that's not possible, just don't give up, you can't go on living in constant pain and have it impact on all areas of your life. Good luck, and I hope things get better for you soon xx

  • I would seriously think about complaining about how she dealt with you. That's unprofessional and she has no right to just wave you away without taking any of your concerns/symptoms/pain seriously. xx

  • I would advise you to go back to gp and see if they can refer you somewhere else that can see you sooner. It's choice based now so you can choose where to be seen. ive just been re referred as I'm experiencing difficulties after being stable for 7 years. My gp chose the gynae who could see me the quickest. May be worth a change also as it doesn't sound like your last gynae was very sympathetic.

    Going to a and e is also another good option of pain is severe as they can check you over and do a scan etc.

    Hope you get something sorted soon. X

  • I'd avoid that gynae if I were you. She is clearly uneducated, inexperienced and out of her depth with your case. And also very rude. Your endo is serious if you are experiencing such awful symptoms and impact on your life. Severe symptoms can often occur when endo is visually minimal. Visual appearance does not always correlate with symptoms.

    There appears to be only one accredited endo centre in NI. It's second on this list and it's in Derry. bsge.org.uk/ec-BSGE-accredi... Is this where you have been referred? If not, you need to change your referral to this team as they are specialists in endo and are more appropriate than a general gynae.

    If you have indeed been referred to this team the best way to reduce that 8 month wait is to look up the 2 surgeons online for their private practice and consider paying for a private appointment. You can then switch to nhs but you may have to wait for scans/ops but the advantage is you might buy yourself a bit of peace of mind and a bit more of a plan of action. Should cost anything from £150 to £250 but ask when you ring.

    In the meantime do your best to improve your diet and lifestyle and research things online that will help you help yourself. Surgery and drugs aren't the only options to help alleviate symptoms. Great book I recommend is From Pain to Peace With Endo by Aubree Diemler.

  • Keep going back to the doctor lovely. Keep persisting and stay strong. If its stopping your daily life, they have to take you seriously. Keep a diary of your symptoms and take it with you. Sending you a big hug xx

  • Dear weebird,

    I am sorry that you are struggling in this way and your recent experience has not been a positive one. I can but offer you some information and some useful links that may help.

    I would suggest returning to your doctor to better understand the dosage and frequency you are expected to take the medication you mention - Dicloflex. I am not familiar with it but by the looks of things it is an anti-inflammatory tablet.

    Regarding the long wait for referral, you mention you are in Northern Ireland, I can point you to the following link to the BSGE website. They offer lists of specialist endometriosis centres made up of teams of gynaecologists, urologists, pain management specialists, endometriosis specialist nurses and colorectal surgeons across the country.

    The nearest centre to you would be the Altnagelvin Area Hospital Endometriosis Centre in Londonderry:-

    bsge.org.uk/ec-BSGE-accredi...

    Ahead of a consultation with your gynaecologist, you may find it helpful to complete and bring along with you a pain and symptoms diary:

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/sites/...

    As far as pain management is concerned you may find the following of use. From page 8 onwards of the treatment information pack offers pain relief options. I have also added a few other external links:-

    endometriosis-uk.org/sites/...

    britishpainsociety.org/

    cnhc.org.uk/

    acupuncture.org.uk/

    I hope this helps.

    Take care,

    Simonetta, Endometriosis UK

  • Thank you for this. I will look through it.

  • Thank you everyone. I'm really glad I joined this community, It is nice to have some support.

    Firstly I did put in a complaint. I had my op at the Mater. It was more than the consultant, 'You have endometriosis but I don't have the time to talk to you' (that was literally our conversation). I asked her what do I do, she said she is discharging me and then left. My aftercare was a print out one of the nurses got, my sister kinda barged in and demanded I get aftercare. She had been standing outside for an hour trying to get in. They barely spoke to me, they just slabbered about the filipino nurse (yes a touch of racism too) and talked about how well their eyelashes had stayed on from the night before. Then they had a fight with the anesthesiologist, they hadn't brought my inhalers down and she asked that they get them. The anesthesiologist was nice, she was the only one who made me feel human.

    I've had my experience of A & E. I ended up really ill after the lap, I went to the Royal. The doctor referred me for an emergency appointment but they lost the referral. I then got an appointment but they took it back off me.

    I genuinely thought that a private consultation would cost more. So this is something I will look into. I am also following the Endo Diet. I do pilates but at the minute excerise is aggravating it. I also use some essential oils. I find lavender, frankincense and ylang & ylang make a good adominal rub. Black Pepper is good for aches and peppermint for nausea.

    Thanks again for all your help, it really has made me feel more positive xxx

    Oh and I am keeping a diary, I downloaded an app 'Period Tracker' and another one called 'Catch my Pain'. I also have a journal too, it is a nice Paperblanks one, if anyone is into stationery ;)

  • Sadly this is the case for lots and lots of women, Amy had very similar situation for a long time. The only advice I can give is that you keep pursuing it, keep going back to the GP and as hard as it is, you simply cannot accept no for an answer. Its stories like this that make me even more determined to complete my fundraising attempt for Endometriosis UK as there is simply not enough help and advice out there.

    Maybe some short term helps would be to have a good look at your diet, try to cut out gluten or dairy, and focus on getting some really good rest. Amy found that cutting alcohol out of her diet really helped keep the 'endo belly' at bay a little more.

    Hope you find some help soon.

  • Hi hun, quick question where abouts are you? 8 months is ridiculous and you shouldn't have to wait that long to be referred to a endo specialist. Try googling endo centers there is a website think it's bsge.org which has a list of centers. You can go without gp referral if your willing to pay for a private consultation. Alternatively seek a second opinion from a different gp. Best wishes xx

  • I'm in Northern Ireland. We don't get to decide where we go. You get sent by trust. Apparently there is a centre in Derry but I can't find any info on it. Its not in the list of services on the link. The only stuff I can find is the Stormont minutes discussing whether or not too keep it open. Its also 3 hours away and I don't drive, which is worrying. I'm kinda on my own. It was incedible difficult even to find someone willing to pick me up from my laprascopy.

    However there is some good news. I found out in work that I am entitled to health insurance. Which makes the private option an actual option xxx

  • Hi,

    I'm in Belfast and I just saw my GP in Holywood Arches yesterday and requested that he refer me to Dr. Moohan in Derry. He did try to find me someone closer to home that specialised in Endo (I'm not sure what qualifies a specialist) and from a gyne colleage he he heard Dr. McClelland and Dr. Jim Hunter work in Belfast on NHS. But I asked to be referred to the accredited doctor and it didn't sound like there would be a problem with that. He heard from his colleague that the belfast docs were about a 6 month wait on NHS, and Moohan was expected to be a 3 month wait.

    All of these doctors also practice privately.

    bsge.org.uk/ec-BSGE-accredi...

    I hope that helps in some way!

    Molly x

You may also like...