Hey guys, I’ve currently been suffering really badly with my endometriosis for a while now. This has left me bed ridden, unable to walk and aggressively throwing up on the particular bad days.
I moved out of area the beginning of the year and had to change GP’s, however my GP failed to refer me to the gynaecology in the area, which then resulted in me missing my appointment, that was meant to be scheduled for the beginning of April.
Unfortunately now I won’t be able to see a consultant for another few months, due to the late referral and covid backlog.
I am constantly chasing the doctors up for an urgent appointment, but they don’t want to listen to me or even offer any advice.
I’m currently taking the microgynon pill and I’m up to my eye balls on painkillers, which have little effect on me. I use all different home remedy’s such as a water bottle or a hot bath but I cannot be pain free for at least a couple of hours.
I recently got admitted into hospital because the pain was unbearable, again I felt like noone wanted to listen to me.
I feel like I’m at a dead end, this condition is so crippling, isolating and draining all in one. And makes it even worse when doctors don’t want to listen to you and think your making the whole thing up. My mental health is at an all time low right now, I just want my life back and have some sort of normality. I cannot cope for another few months like this.
Has anyone been in a similar position? How did you get through it? What sort of things did you use to help you?
I will appreciate any sort of help right now!
Thank you
Xxxx
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Charlxxx
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I know that getting in to see someone right now is hard, but be persistent and do research on the doctor! I went through many before I found one that would perform laparoscopy. When I did menstruate, I found muscle relaxers worked best (weird, I know, but think about it... it’s a muscle!) I had an ablation, which seemed to help (2yrs at a time 🙄). I’m now scheduled for a hysterectomy, but this has been a 12 year long nightmare!! Even the hysterectomy isn’t 100%!!
When it comes to pain, I hate pain meds, but get to the point that I don’t have a choice, because nothing else works.
And fatigue... that’s no joke either. I’ve started taking supplements, Cordyceps, Calcium, Magnesium, D, Omega 3, and CBD for sleep...
I really wish they would do more research into what causes this and treatment, because there is NO cure. Unfortunately, most GYN’s are men and don’t understand the severe, uncontrollable pain we endure with this disease!!
I know how you feel, it took years for them to finally sort something out, I spoke to a consultant nurse she listened to me and said I will get to the bottom of this and find out what it is , she sent me for tests ect , this was just before covid few years ago . I used to have a hot water bottle for soothing and used breathing techniques when the sharp pains got worse. Not even strong pain killers work all the time.
Go back to the GP and keep going back. You are very ill and the treatment is not working. The GP can review your pain relief, prescribe something to help with the vomiting, and meds for IBS like Buscopan can also help with cramping. They can also call the consultant to prioritise your appointment.
Consider taking someone, a friend or family member to advocate for you, it can really help. Write down what you have written in your letter and give that to your GP and ask them to put it in your notes ( I have never tried this but a friend suggested it to me when I was at my worst. They can’t say they didn’t know)
If there is more than one GP in the practice, try another one. Their website will probably have details about each one, someone might have an interest in gynaecology. In my experience recently qualified GPs are more up to date and more willing to go the extra mile.
Consider putting in a complaint to the practice manager if you feel you are being brushed off.
If you know which consultant you are waiting to see, try calling their secretary and explaining you are desperate and asking for any cancellations.
I really feel for you, chronic pain/illness is so isolating. I hope you get some improvement soon.
Have you tried a TENS machine? It's been a life saver for me lately! I also have a heated pad that's like the hot water bottle but you can lay on it to soothe your back, and you don't have to keep filling it up!
I'm sorry you're struggling so much, take a couple of breaths and remember how strong you are. You've come this far, your body has taken a serious amount of pain, you can get through it darling. Don't let it take you down! My husband keeps reminding me how strong i am, I know it's not easy to make yourself actually believe it, but if you keep it in mind sometimes it helps. Does for me anyway xxxx
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xxxx
What pain relief do you use? Also, sickness with endo?
I’m back to square one and idk what to do 
What does one with endo do when pain killers don't help at all with the pains?
don’t know what to do about pain
Has anyone had the merina coil put in? I’m very unsure what to do to help with pain? 
