Ambulance Journey Number 3!

[budasti]

I'm still in the process of being diagnosed with Endo, but the pain is so unbearable at times it calls for 999 as I literally cannot bare it, and I'm pretty thick skinned when it comes to my gynae pain!!

So a few weeks ago (23rd April) I was taken into hospital by ambulance due to uncontrollable pain. This time however gas and air did absolutely nothing to relieve the pain, it just made my head feel very muzzy, so they gave me morphine to finally bring me relief.

This time the pain was worse, it lasted longer (nearly an hour this time) and I needed stronger pain relief. To be honest, my first ambulance journey gave me gas and air which did nothing, but no morphine, the second the gas and air worked a treat, and gave me strong light headedness, and the most recent time the gas and air was like the first trip, didn't make me feel anything and did nothing to the pain.

Firstly I'm wondering if all ambulances actually carry full gas bottles, as twice now it seemed like I was sucking little to nothing at all.

Secondly, I'd like to know whether anyone thinks my condition (be it endo or otherwise) could be getting worse, or that the pain just reaches scales at different times? It just seems to be getting increasingly more regular that I'm in pain, and it wasn't even quite 2 months since my last hospital visit.

After all this I've been prescribed 60 mg codeine and 1000mg paracetamol to replace my usual of co-dydramol which was much lower and had pretty much stopped working. So basically, I'm waiting for my consultation in June, 6 months to the day since my last, and am fed up with being drugged up to my eyeballs just to get through the day, but a going to push for a laparoscopy and not take no for an answer this time!!!

Thanks for any help,

Jo x

[Mindstorm]

Lucky you to get anything! Like you I am undiagnosed but suspected endo, adeno found on scan and a cystic ovary. My pain started with 2 flares in November which disappeared. Pain came back in Jan but the daily level has increased. Flares are now longer lasting and more severe and literally put me off my feet.

I had an ambulance called in March but nothing given on journey and was given a shot of Buscopan which did very little. I was told to up my Tramadol to above what the prescription label said and told I had a "pain management issue and A&E is not for that". I was sent home barely better than I arrived and had to rely on lying v still, hot baths and heat pads.

Last week I had a major pain flare and maxed out Tramadol and Ibuprofen. I was given a lift to A&E (diff hospital this time) rather than an ambulance. The Triage nurse looked at my notes and said that because I was under a consultant and had a suspected cause I was not an emergency - I was in tears with pain and hobbling and desperate. I was passed to the urgent care centre where I saw a Dr who said he could give me no more pain meds what did I want. I sobbed like a baby and said I need something I can't take any more and I have no more pills I can take. He gave me a shot of diclofenac to reduce inflammation which did help some and sent home with a Naproxen script.

I am worried about future issues. I am guessing that I just have to stay home and do my best alone as the two local hospitals clearly don't think blinding pain is an issue. Maybe it's because when I am in pain I am quiet, teary and withdrawn, if I was screaming the place down I may get a different response?!

[_Tamsin_]

So sorry you are experiencing this. I can really relate to this - the same thing was happening to me over and over again this time last year. Pain so severe is extremely draining. I'm glad they gave you the morphine - the worst thing is when they are reluctant to give you morphine even though nothing else is working. x

[Kaysha40]

Hi they can only give you the buscopan and gas an air in case you are having a miscarriage, A & e won't really help as they just patch you up and send you home. The docters don't always no enough about this condition and believe me when I say I've had 30 years of docters fobbing me off . You have to go armed with all the facts yourself. I went to the docters with a mass that grew on my incisiol scar from emergency c section that with every period and was really painful it feel like a hot poker stabbing me. The docter told me it was a lump of fat. I came away from there and researched everything I could and went back four times. And then got referral at appointment she booked a scan, and tried to talk me out of having a lap done. I stood my ground I wanted to know what was wrong with me. I went to ultra sound scan and had a vaginol scan too, he asked me loads of stuff but more than anything he really understood there was a nurse with him who had endo so they know how I felt. He found endo in several places in my womb. I cryed when he told me. My pain was real and it was not Normal . I'm having mass removed and lap on Monday. You have to keep on banging on doors. I was told after a scan I had pcos and put on pill it's took years to get where I've got I just gave up trying to get them to listen. I thought this was normal because they told me it was. Write a symtoms diary. If they fob you off go to the next one and then the next don't be like me and give up. I was 10 when I started my periods I'm 40 now. I told her enough was enough Kxx

[SophieK2]

Hi Jo,

I'm so sorry to hear about your horrible ambulance experiences

I cannot believe you have been prescribed codeine and paracetamol and previously had co-dydramol! Why on earth would these help? Surely you need anti-inflammatories for a start. The first ever time I went to the doctor about period pain I was prescribed codeine and it made me like a zombie. So I went back and got co-dydramol and it made me even more zombie like. I could not function normally on it! Then I went to a different doctor who was brilliant and told me that it's far more effective to take NSAIDs for period pain, and even better that some particular ones have good side effects for women with period pain, like making your periods lighter. Some people take mefenamic acid but I actually found naproxen more helpful for me. There was a small study done in Iran which showed naproxen to be more effective than mefenamic in treating heavy menstrual bleeding (sajog.org.za/index.php/SAJO....

Also, to get the full effect of NSAIDs you should take them BEFORE your period starts, if you possibly know when it will (those apps to track your period on your smartphone are great):

"NSAIDs, such as Ibuprofen, Ponstan (Mefanemic Acid), and Voltarol (Diclofenac),are anti-inflammatory drugs that can help to reduce pain – but they do not work in the same way as normal painkillers such as paracetamol. They work by reducing the production of the pain-causing chemicals (prostaglandins) in the body. For them to be effective, they must be taken before the prostaglandins are produced. E.g. your doctor may ask you to start taking them a few days BEFORE your period is due. Even though you may not be in pain then, they will be stopping or reducing the production of the prostaglandins – so the pain should be reduced when your period does start."

(endometriosis-uk.org/endome...

I also have a prescription for Tranexamic Acid and I find it an absolute saviour as it makes my periods really light, would this possibly help you at all? It's not a painkiller so you can take it alongside naproxen.

patient.co.uk/medicine/tran...

If you find your doctor supportive I suggest you make an appointment ASAP to discuss a new, more effective pain management regime in terms of painkillers, or else a referral to a pain management clinic urgently.

If you don't find your doctor supportive then don't be afraid to register with a different one. When I changed my doctor he immediately suggested the tranexamic acid and I had never heard of it before but it's been about for ages and I was really annoyed as I could have been taking it ages ago - I find it so effective that it greatly reduces the amount of painkillers I need, it pretty much stops my period. Also I can't believe that despite all your ambulances trips you still haven't been referred for a laparoscopy - cut the crap and DEMAND one, do not leave until you have the referral. Get copies of your notes from A&E if possible and write down all your experiences, condense them into notes and bring them to your doctor to help you build a case - that's what I did. It helped my doctor to get an overall picture and see how serious I was about needing a referral for a laparoscopy. At the end of the day, doctors do not have "x-ray" vision, and if you're in that much pain, then you need a laparoscopy to find out what's wrong.

I also went to yoga for 2 years but had to stop because of back pain, however I am continuing with meditation classes with the same teacher as I found the "mindfulness" techniques she has taught me so useful. You may find it helpful to have some emotional/mental help for your pain management such as learning mindfulness techniques to help you cope day to day to really tackle the pain head on, in addition to more effective painkillers.

Do not give up. It is not acceptable for anyone to be in that much pain.

Hugs, Soph xx