Need helpful advice- new here ❤️

[Chester28]

Hi all,

Thank you all for sharing your stories as it has helped a lot with understanding everything as it’s all very new to me.

So last September I started getting alot of left side pelvic pain and been having heavy/blood clot periods since September , I honestly never experienced pain like this and been having this pain on and off ever since! I was consistently pestering the doctors to solve this for me as they were not helpful at the beginning and I knew something was not right as I never experienced this before! They did finally listen to me and referred me to have an ultrasound. I had an ultrasound and they have found an 8cm cyst in my uterus and they think the symptoms that I have been having is linked to endo. I have now got my referral letter to see the gyno and waiting for an appointment, but concerned that I will be waiting a long time for the appointment 😔. The flare ups are really bringing me down, I never know when they are coming or going; I am bloated all the time (I look like I am pregnant), getting dull/sharp pains on my left side and goes round my lower back/down my upper thigh and feeling tired all the time, diarrhoea and hurts when I urinate.

I am taking painkillers etc, but just want to know if these flare ups are like a trigger to something or is it always unexpectedly? Also how long has the waiting time been to see a gyno through NHS?

Thank you for your help ❤️

[guillemot]

Hi Chester,

I'm still pretty new to all this too so not sure how helpful I can be, sorry!

I had about a 3 month wait from being referred to getting an appointment, so hopefully you won't have to wait too long. It does seem to vary depending on where you are in the UK. It's been really difficult with covid lengthening waiting lists and getting to see doctors, I hope you're doing ok ☺️

I have pain all the time but there are weeks when it is worse, many people say that diet can have a big impact on flare ups and symptoms, so it might be really helpful to keep a pain diary and see if anything is triggering it, as well as making a note of what you eat and seeing if that also is affecting anything. There are a few books about the effects of diet on endometriosis, and the endometriosis UK website has helpful information too.

I hope this might be useful, all the best for your appointment too! 😊

[Chester28 in reply to guillemot]

Hi thank you so much for your reply ❤️.

Ahh you have been very helpful thank you so much ❤️

Ahh ok that’s good to know, it does feel like a long wait when you are in pain, but I understand that the NHS are stretched at the moment 🙈. How did you manage your pain while waiting to be seen? I have been taking prescribed pain killers and starting to use heat pads and the heat pads seem to be helping a bit, but I know exactly what you mean with the flare ups as it can get pretty bad some days.

Ohh ok that is good to know, and thought that maybe it could be certain foods or drinks that maybe causing the flare ups. I will definitely have a look into it, thank you so much for your help ❤️

I hope your process with it all goes well and always here if you ever want to chat ❤️

[guillemot in reply to Chester28]

Hi, sorry for my slow reply!

I completely understand how you feel about the wait, 3 months seemed unbearable, it's really difficult isn't it - sending you support and best wishes for getting through this! ❤️ I really hope you get an appointment soon.

I've ended up greatly reducing everything I do to try and reduce the pain, especially as any exercise seems to make it much worse for me - trying to build it back up slowly! I was given prescription painkillers too which don't do much on the really severe days unfortunately.

Hot water bottles/heat pads are definitely a go-to for me too, I've found them really helpful at times! 😊

Some people have suggested a TENS machine, in case that's something you've not come across. I was told not to get an expensive one as they all do the same thing! It didn't work for me but I know some people find them really helpful in reducing pain 😊

I was also referred to a persistent pain team, I think there are pain management centres that your GP could refer you to so might be worth asking about? 😊

The first line of treatment for endometriosis that they offer seems to be hormonal treatment, so depending on your situation might be worth asking your doctor about this as well. Definitely worth knowing as it's quite a lot to think about anyway 😊

Really helpful to keep a pain diary for all the questions they will ask at the appointment, and it might be useful to write a list of questions you'd like to ask beforehand too. The endometriosis uk website has some download sheets about speaking to your doctor and your consultant that might be helpful 😊

I hope this might be of some use! 😊

Aww thank you so much, I really hope it goes well for you too! Likewise I am always happy to chat and I really appreciate it, thank you! ❤️