Help getting help

[Evanss]

Hi all. Although I've been following these posts this is my first entry. I am just at my physical and emotional wits end. I'm struggling to get help with my endo. I was diagnosed over 10 years ago and had laser surgery. For years I have been battling it's resurgence. I just can't really get any health professionals to take it seriously.

I've bled everyday for a month my GP referred me to the hospital gynaecologist. However, I can't get in until September!. I'm worried I'll carry on bleeding until then! I'm exhausted and in pain- and work full time. Does anyone have any advice? I can't get back in at my GP for weeks and am at a total loss. Does anyone have any advice??

[confusedandworried]

Hi sorry to hear you are struggling at the moment.

Given you have been bleeding for so long I think it would be reasonable for you to contact your GP and request an urgent appointment - explain to the receptionist your need for an emergency appointment. You may need to be tested for anemia under the circumstances and your doctor may be able to prescribe tranexamic acid in the short term to lessen the bleeding whilst waiting for a specialist appiintment.

Also I note you have had laser surgery for endo in the past. I'm guessing the surgeon used the laser to burn the endo instead of excise it (ie cut it out). If this is the case it may be why your symptoms have returned. Excision surgery is now considered the gold standard of endo treatment and a skilled excision surgeon offers the best chance of reducing or eliminating endo symptoms. However it needs to be undertaken by a skilled endo specialist, not just a general gynaecologist whose main interest lay in the reproductive organs so they are unlikely to effectively address endo elsewhere (eg bladder, bowels, ureters etc).

Do you live in the UK? If so you can request a referral to a BSGE accredited endo centre via your GP as is your right to do so under NHS choices. These centres are nationwide and you don't just have to choose your local one. However if you are in Wales or Scotland I think it's not so straight forward but am unfamiliar with the system I'm afraid. You can find a list of the centres at the following website: bsge.org.uk

Unfortunately not all BSGE centres are equal, some are better than others so it's worth asking around for recommendations. Whilst you are not able to do this in open forum on healthunlocked your are able to do so through PM. .

I hope this helps.

Best wishes, Jo

[Evanss in reply to confusedandworried]

Thanks Jo! I'll try and get in at a specialist centre.

[Seaside1]

You poor thing. I know how this feels it's not nice at all. I agree with the other reply, ask for an urgent GP appointment, you should not have to wait weeks to see a GP with your pain etc. Unfortunately us endo sufferers really have to push for advice, appointments etc as there is not enough awareness about the condition. I also agree that you should definitely get seen by an accredited endo centre. I was referred to a general gynae consultant at a hospital years ago, he was more than useless - he even told me after a laparoscopy I did not have endo. I then was forced to go private and saw an endo specialist who indeed diagnosed endo. From personal experience general gynae consultants are not necessarily the best for treating your endo. Some may be great by my one was not. At a specialist endo centre you will be seen by a doctor who specialises in endo so they will know exactly what to look out for and are in the best position to advise you. It is your right to be seen at such a centre. When you have your next appointment with the GP ask to be referred to your nearest endo centre. There is often a bit of a wait to be seen for these things so best to get the ball rolling asap if you can. All the best. I hope you get the help you need very soon, hugs xx

[Evanss in reply to Seaside1]

Thanks so much. It's lovely just to be listened to, believed and be around people on the same situation. Hugs. X

[Evanss]

Just an update on this. I am still bleeding, didn't sleep last night because of pain. (Since 1st July) managed to get an appointment at the GP today although I've been told 'not to expect much as I can't be examined due to bleeding.' My stomach is really bloated and I've lost my appetite now too. I've come home from work this morning due to exhaustion. Does anyone have any suggestions I can say to a clueless GP? What to ask for etc? I have a hospital appointment but it's not until 11th sept. I can't carry on like this until then. Sorry to post a moan, getting a bit desperate!

Here's hoping....

[Seaside1 in reply to Evanss]

Maybe it's worth calling the hospital to ask if there have been any cancellations so you could be seen sooner? Hope your GP appointment was useful the other day. I note you say you are in a lot of pain and work full time, it may be useful to discuss pain meds with your GP and if the ones you are on are not currently working, perhaps to try some alternatives until you find one that works for you. All the best, hope you get some good advice and help soon xx