I’ve been awake since 12:00am couldn’t take painkillers until 2:30am .. constant pain I don’t know how much more I can endure. This is not normal, I’ve lived with this for 15 years worst it’s ever been. Can’t get in to see consultant.
naproxen 4x a day with paracetamol as a pain killer is now not lasting. Can anyone recommend any other pain relief? I’m so desperate..
this might not help but just encase - I find taking some andrews (a powder mix to make you pass gas) can somtimes help is gas is pushing on any parts that are inflamed. Good luck 
also a super salted bath (salts make you more boyant and reliefs pressure)
thank you So much for replying I will try it, desperate for anything to work x
I use medical cannabis for break through pain when Tramadol and paracetamol isnt enough.
Google Sapphire Medical clinic and find out if this is useful for you xx
I hate living with this pain. It wakes me up, it stops me sleeping, it stops me living my life. I'm on a 1 year waiting list for hysterectomy and bowel surgery... 1 more day is too long let along 1 year. This is a cruel disease!
thank you so much for your reply. My wait is similar over 12 months at last appointment Same surgery x
Hi,
so sorry you are going through this. Its so exhausting and overwhelming being in chronic pain. Do you know what stage endometriosis? Do you know what is the next step for you e.g. if severe refer to endometriosis centre? or more imaging etc?
I generally manage much better now with naproxen and paracetamol with flare ups ( I had a diagnostic laparoscopy in June with adhesions removed but still based on MRI rectovaginal nodules left, adenomyosis) but there are days/ nights this doesn't work. When it is really bad I will take the odd dihydrocodeine but find I get constipated if too frequent. My doctor did give me gabapentin at night if really struggling with it. Flare ups were more common/ intense at menstruation and ovulation.
I am also on the progesterone only pill on the hope it may stop or reduce menstrual bleeding with a partial response.
Speak to your GP about pain management in the mean time or ask for referral to a pain management team to help give you more medical options when it gets unbearable. Enquire about hormonal medication if not on already if appropriate etc. No-one should be left to suffer. When I see my GP they also send a repeat letter to the endometriosis clinic to try and get me seen sooner, not worked so far but I appreciate the effort and kindness of my GP!
Also use a hot water bottle. Have a TENs machine which has a 20 min cycle also with heat.
I have had some phone consults with a pelvic floor physio who has said techniques for trying to relax an overactive pelvic floor ( happy to send some links if you want/ message me). I try to do a bit of basic hathe yoga or physio stretches as per my physiotherapist (I'm no pro at yoga I just go on youtube and look for basic guided ones- childs pose, happy baby pose, hip flexor release are meant to be good stretches for pelvic pain). You can self refer for physio I asked my GP practice how to for my region and I am sure it was all online. I know when in pain its the least thing we want to do but I try and do them in the morning when I don't seem to be as painful or suffering from fatigue.
I hope any of this helps but I'd strongly suggest while awaiting further support from gynae contacting your GP to discuss pain management and ask re pelvic floor physio. I found it initially a bit hit and miss but I found a Gp within the practice with an interest in women's health/ pelvic pain thus find in this horrible waiting period can at least get some guidance. Maybe ask if anyone in the practice also has an interest in endometriosis/ women's health.
❤️Sabrina xx
Dear Sabrina, thank you for taking the time to write such a detailed reply. My apologies for not replying to you last night I was in absolute agony. Even to the point I nearly called an ambulance, told my son I was going to hospital.. his little face just looked broken. This takes a huge toll on my family there are only my husband my son and I.
I am stage 4 but I’ve been stage 4 for many years. Mri Ct did show some bowel endo less than 2cm. Chocolate cysts approx 3cm both ovaries and possible adenymosis. The cysts on my ovaries I’ve had a long time. No change in size. Long term my consultant said surgery, remove shave bowel possibly resection bowel if the E do was deep they wouldn’t know that until the operation. As you can imagine I was horrified at the thought of possible stoma etc however my pain wasn’t bad enough then (that was august) also possible hysterectomy (had to decide which one best) because I also have rheumatoid arthritis i have to weigh up going into a surgical menopause and the effect on my joints. My problem stared when I had the Mirena fitted (6th September) It lasted one week, o had it removed due to pain. Then I was hospitalised for a week with in infection probably because of the Mirena. I’ve never been the same since. 4 weeks off work, I’m living maybe 5 hours pain free then the rest I’m waiting to take naproxen and paracetamol. Last night I suffered more because I couldn’t take the naproxen and paracetamol quick enough (otherwise I’d be ‘over dosing). Today woken Tat 4:39 In pain. I knew I could take my pain relief earliest at 5 so I’ve had some porridge taken both nap and paracetamol, done some pelvic floor excercisrs that I found from the internet. If you wouldn’t mind sending me your links I’d be really grateful. Thank you also for the name of the additional pain relief I will talk to my doctor on Monday. I’ve never been so scared of my endometriosis in all the time I’ve had it. It usually ruins 7 days a month not the constant pain it’s doing at the moment. I’m so exhausted, my son and husband are too.. I just feel like I’m such a burden. I feel like it will never stop. That this is it.. no one should be expected to live like this it’s just not right. So many of us just left to suffer and put up with endless hours pain. Thank you again for your reply Sabrina it really does mean a lot to me xx
My dear I am so sorry, this disease is so cruel and at times we all feel powerless by it but it will get better. You are not a burden your husband and son love you and will just want you pain free too. I've been there too pain so bad I consider calling an 999 but talked myself out of it. If it does get really bad over the weekend and you cant wait until Monday an option is calling 111. They've been quite useful for me in the past sometimes just refffering to local urgent care centres or at my worse arranging an ambulance etc.
Medication wise there are certainly more options in the mean time you can discuss with a doctor. Opiates ( longer acting - codeine, Dihydrocodiene) but really make sure they give you lactulose or laxido as constipation is a known side effect and can make the pelvic pain worse. Gabapentin or tramadol were offered at a point not much was working. For chronic / nueropathic pain they also offered amyptriptyline as an option. Thus all can be discussed which may work best for you. Everyones body is different. In my case I've avoided any which can affect cognition or memory for work purposes ( no tramadol or amyptriptyline for now but id consider if too painful to work again). Also discussing other hormonal options which may help you I guess.
The pain I find flares up if bowel issues if not passing as I said bloating and constipation seem to aggravate it so I'm eating loads more fruit and veg , avoid dairy ( I have an allergy) and cafeine and alcohol. Currently I still need one laxido per day to have stools soft enough to pass the colorectal specialist says its likely the rectovag endo nodule is being pulled causing some of the pain and making it hard to pass formed stools.
Also bit random but is pain worse lying on your back? found at points sleeping on back the pain was worse. That was prior to surgery at that stage had adhesions bowel to repro tract, heavily scarred repro tract, nodules broad ligament. Adhesions were pulling the stiff pelvic organs. Because they couldnt move freely that was the source of some of the worst pain endo has given me.
Oh i checked the physio stuff alot of word documents quite long. If you DM your email address happy to send it all. Or if you prefer not to send email address when I finish work can have a look better and send bits of it.
Hope you get some peace today.
❤ Sabrina x
cocodamol you need to get the stronger ones from gp though, my pain has been so bad last month I had go back my gps and prescribed me oramorph aka morphine which after ten minutes the pain eased
Hi , Have your sympthoms changed ? Have you had a scan recently
call in ambulance next time your in agony. Get visits to doctors & hospital on record. Make yourself heard.
Have you had any surgery at all in the past?
Take care x
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