Just found this forum after a friend suggested looking into support groups. I'm awaiting a gyno appointment at the moment with no idea when this will be, due to covid-19.
I have just experienced an extremely bad period this week and its affecting me quite badly mentally. Sets me off weeks of good work and makes me feel extremely isolated. Any advice on how to cope with this please?? Any time i try to speak to a GP (ive changed 3 times since January) all they want to do is give me painkillers.
Hello! Are you seeing a endo specialist or not? Try using a hot water bottle as well when the pain is bad. Also ask the GP to refer you to a specialist pain management clinic. Get a referral to a endo clinic if possible. If the endo is in your bladder and bowels and is particularly severe then you can make a request to see a endo urologist. Best of luck! I hope you have some answers soon.
Second the clinic. Unfortunately that’s about all you’ll get from the GP, painkillers, laxatives and the pill/HRT. GP has told me there is nothing they can do.
I’ve been looking at other surgeries, but still tossing up and wasn’t a good time with covid.
Depending if you have funds, might be worth seeing someone experienced privately, these will possibly be reduced as well at the moment.
Hope you get sorted soon
Thank you for your advice!! GP has told me similar! Yes ive been looking into the possibility of private care also if financially possible.
Thanks!
The initial consultation cost £200, I did have another before op.
You can go back on NHS, the consultant can add you to their list if they choose to.
Worth looking at who has experience.
I’d had an NHS referral, but it went to urogynacology, it’s the admin who make the initial choice in which consultants pile your form goes in.
Thank you so much for that info. really appreciate it!!
Hi,
Expert opinions definitely useful - I went private first then referred through to nhs. I also got a referral to pain clinic which was v helpful. Therapy in particular.
I found trying different things helped me - made me feel more in control. Pain wise hot water bottle - glued to me at times!
Also: yoga (researched positions for endo - different for different times for he month), anti inflammatory diet (plant based), TENS machine (didnt do much for me but cheap from Amazon nd worth a try), free bit of curable app (made me look at pain differently plus inspired me to try meditation - the more stressed you are the more pain you feel which for me was a turning point). I also take a range of vitamins. Mostly designed at reducing inflammation nd ensuring I'm as healthy as possible.
Basically I threw everything at it and although still experience pain it is now manageable and I am alot healthier overall. Even chose not to have surgery. Looking a t it holistically works for me.
Hope you find something that works for you. There is loads of info online on the endometriosis uk website - questions to ask at consultations and discussions of medication options for when you get to that stage.
Hope you find something that helps you. Xx
Thank you so much for this info!
I regularly meditate anyway but had never thought to try during this time. Unfortunately TENS machines have been a tried and failed method for me too!
Yes making it more manageable rather than trying to stop it was what I'm looking for to help my mental wellbeing.
Much appreciated x
You might want to think about stopping your periods for now if you aren’t looking at getting pregnant anytime soon. You can take the pill back to back without a break or try the mirena coil. It’s changed my whole pain outlook. I have pain outside of my period too but it helps not getting one week a month where I can’t move.
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