still waiting for hospital referral and u... - Endometriosis UK

Endometriosis UK

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still waiting for hospital referral and unsure what to do…

R0zie profile image
7 Replies

I’ve been waiting almost 2 years for my first initial hospital referral. GP done as many tests as they could then referred me for endometriosis. I get severe pain both the week leading up-to my period and my ovulation week is often much worse. The GP will only give me pain medication but say since the referral has been sent there is nothing more they can do. They put me on anti depressants as I’m diagnosed with PMDD which is helping however this is taking over my whole life and I have no idea how long I’ll be kept waiting. Does anyone have any advice? I’ve had a look at private healthcare but it’s so expensive. I just don’t know what else I can do.

7 Replies
CryBaby91 profile image
CryBaby91

Hey ROzie, I'm so sorry to hear how much you're struggling! I have a few things that may help (if you've not already tried them). I totally understand the frustration, it's taken me years to get taken seriously by any doctors and the whole process has been really hard on me.

What pain medication are you on? Tweaking it with your GP can often help, I can't say what medication to take but please speak to them. It may also be worth requesting a referall to the pain clinic, that way you can get some help specifically for the pain whilst you wait for the gyne.

Have you called the hospital where the referral has been made? Do you know if you're marked down as "urgent" or just as a standard referral? Your GP receptionist should be able to give you this info, but only the GP can upgrade you to "urgent" if you're not already. If you're down as urgent then you will be seen faster, but please be prepared for a long wait regardless. I think I waited around 6 months for my telephone appointment and I was down as urgent. I'm also over a year into the surgery waiting list for a lap! So definitely push on them and find out what the average wait is for patients who are like you. It can help if you know how long you'll be waiting.

Pain relief that's not medical, are you using any heat relief? This could be hot water bottles, heated pads that you plug in, hot wheat bags, heated blankets? Or possibly cold relief, like freezer packs? There's also deep heat which can be helpful for deep back pain, and some patches called BeYou that are good for period pain. They don't take all the pain away but they take the edge off! I also use lots of things like epsom salt, massage guns, tens machine. I do daily yoga that is aimed at endo sufferers, there's loads of free vids on YouTube.

Other than that, diet can sometimes be helpful! Have a Google at the best diet for endo, I tend to avoid red meat as it sets me off. But we are all different, so finding what works for you is often trial and error. (don't start a new diet without speaking to your GP first).

Most of all... Take a deep breath, remind yourself how strong you are and how much you go through. Be kind to yourself, try not to beat yourself up for needing to rest too, I hear way too many people pushing themselves way too hard! Rest is super important!

All the best 😘

R0zie profile image
R0zie in reply to CryBaby91

Aww thank you so much for all the advice! I think I’m just down as a standard referral. My doctors have given me Naproxen and I managed to get some codeine phosphate off a friend who got prescribed it after wrist surgery and didn’t use it - I found it helped however it’s not something I want to be taking regularly. Heat pads/deep heat and hot water bottles are a must but the thing I struggle with the most is fatigue! I asked my gp if they could help and they said because it’s hormonal they can’t and I have to wait for the hospital but when my flare ups are bad I can’t get out of bed for days. I’ve also had to buy new clothes for when I get endo belly as I look about 4 months pregnant. I’ve tried cutting out gluten and dairy but didn’t find it made any improvement - just made my shopping more expensive haha! I got an internal ultra sound which found a fibroid close to my right ovary but got told it was small so probably wouldn’t be causing my pain, however I get a lot of pain in my right side and after the ultrasound I was off work in pain for days. I’m just so fed up of waiting - which from these forums I can see so many others are too!

CryBaby91 profile image
CryBaby91 in reply to R0zie

I have Naproxen too, so far it's not helped that much if I'm honest! I've been waiting to try some nerve pain painkillers, I've been on Dihydrocodein and morphine for years now and it barely does anything anymore. Definitely don't recommend being on codein long term, just because it loses its effectiveness over time. I wish I had known years ago but now I'm kind of stuck on them lol hard to come off once you're on! Especially when you're already in pain, going through withdrawal is just awful.

Omg the fatigue is definitely one of my worse symptoms too, it's crippling me today tbh. I've never really found anything that actually helps with it, to my knowledge there isn't much medicine wise that can help. Are you taking supplements at all? Sometimes having extra vit c, iron and vit B can really help with fatigue. Though obviously it's not going to be a total fix, it might take the edge off the worst of it.

Yeah the diet thing is not something that helps everyone, I've not found it's made my symptoms any better but I have noted it isn't making them worse lol. Things like throwing up have become less frequent, but I'm still stupid bloated. I bought loads of trackies so I can have comfortable outdoor clothes, also baggy tshirts! Occasionally i'll wear jeans and then if I have a baggy top on I can undo the button and the zip and no one can tell!

You're absolutely part of a very big group who are all sick of waiting too lol it's not a nice club to be part of, but I guess we're not alone so that's something.

R0zie profile image
R0zie in reply to CryBaby91

Today I was in bed all day with the fatigue too! Fun times 🙄 I’ll defo look into the vitamins thanks for that advice! I got put on the anti depressants which did help a bit cause I couldn’t sleep when I started taking them so it levelled me out, however now I’m used to them I’m just back to how I was haha. I’m happy to be part of this group tbh everyone seems lovely and so supportive! I felt so alone before I found this forum today! Thanks so much for responding to me! Xo

Crazycatladyjones profile image
Crazycatladyjones

Hi Rozie its very frustrating it really is.Im a year into waiting for lap they said another yr same with GP they said cant do no more than give pain killers!

My GP did wrote to the gyne to help speed it up but it hasnt made a differnce its worth asking them though to do this, also ring the hospital and ask how long tell them how long youve waited already and you are struggling sometimes u just have to keep at them.

All what Crybaby has said is all good advice too.

I find it very hard to deal with this as tome goes on and nothings changing it really is a horrible thing to live with! Take care hope you get seen soon xxxx

R0zie profile image
R0zie in reply to Crazycatladyjones

Aww thanks so much for commenting! It’s the waiting that’s the worst! I hope you hear back soon! GP’s are so useless when it comes to endo but it is quite comforting to know it’s not just mine! I’ll defo ask them to try and speed up the referral 🤞🏻 Lovely hearing from you! And feel free to drop a message any time! Even if it’s just to have a rant! I only found this site today and already I feel speaking to others has been so helpful xo

Crazycatladyjones profile image
Crazycatladyjones in reply to R0zie

Yes me too this group has taught me so much more about the condition too so when I do finally go for lap I know what to expect and what to ask about etc. I am only this far ahead as I ended up seeing a private endo speacilst who also works for nhs so he put me on his nhs list which helped even tho still a long wait. I have only just got an apt thru from original gp referall so that was 14monhs. Thats something to consider if you can find a endo gyne that does private and nhs aswell x

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