Endometriosis UK
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Can't get appointment till Jan 2014 to have surgery to remove two cysts and endometriosis. In pain all the time :-(

So here's my story, Since the beginning of this year I have been having very bad period pain. Each month the doctor would say I had a UTI. By May I had enough and asked the doctor to refer my for a scan. Two months later I get told I have cyst on my right ovary and not to worry it may go away on its own, but have another scan just incase in three months time. Three months pasted nothing no appointment so my doctor tells me to be patient.

Then three weeks ago I work up 5am feeling sick, my stomach was cramping and I couldn't even stand up. Phoned NHS direct they told me to go to the doctors. I couldn't walk never mind go to the doctors!! My partner was away on business so I was on my own. I called on my neighbour to help me get out of bed and get dressed, she took me to hospital. I told them about my cyst on the right ovary and they sent me to gynaecology ward. I was told at first it was dermoid cysts on BOTH ovaries, which had twisted and I would need open surgery. Two days later no surgery but lots of pain. MRI scanner broken so they discharged me. I have since been told by a consultant I have endometriosis and it's quite bad. Was put down as urgent surgery. My date for surgery is January 2014 and I' m still in terrible pain. I called to ask if there was any chance of a soon appointment as the pain was horrible and was told to go private if that's the case and she can't do anything for me. I asked to speak to my consultant but he's now left!!!

What can I do???? Any ideas please????? I have been given a sick note by my GP because the pain is still so bad.

15 Replies

Well first I'd ask for some better pain relief, whatever you are on clearly isn't making a dent. Ask for tramadol or maybe even oromorph. I don't want to seem mean or anything but I had huge cysts and I had to wait a year for my op then they delayed it twice. January really isn't that long a wait for the NHS. :S


That wait is normal, I was on Oromorph and Tramadol every day and took me 9 months to get operated on, had a lap for a look around and they drained a 15cm cyst then I had 3 months of prostap and a 6 hour surgery for extensive excision, best thing you can do is find a supportive GP and play around til you get the right pain meds for you, I had to try loads to get the right ones.

Good luck!

Lilly x


Bugs poor you I feel so sorry for you :( why is it that gynie problems don't get treated seriously by the medical world? Because we are women they're like "take some ibuprophen love and come back to me in a month". I bet if men got endometriosis there would have been a cure years ago! Unfortunately I cannot offer you a solution to your problem, but if it's any consolation I am in a similar situation : I've been in agonising pain and pretty much constantly on my period since July this year; I've had a trans vaginal scan but they found nothing, I've also had a smear test and found nothing. I'm getting all the symptoms of endo and my doctor agrees, however, a few months ago I moved house and he's still "chasing up all my notes from my last doctor". Apparently he can't refer me to a gynie without all my medical notes. It's always "call back in a week, keep taking pain killers". I'm desperate for a referral and I need a laparoscopy scan to get diagnosed but doesn't look like it's going to happen this side of Christmas :.(


Go back to your Dr and ask to see a private consultant under the NHS Right to Choose scheme. I had a similar experience, except I had a 10 year battle. I eventually after being hospitalised for the umpteenth time went to my gp and asked for a private consultant referral letter for a hysterectomy. She said I didn't need to pay and she could refer me as a NHS patient. Hope this helps. That's the link. No harm in asking. Good luck x



Thank you for the link will try this x


Thank you everyone for your posts. X I feel bad about my little rant after hearing what some of you went through. I'm off to the doctors again tomorrow and I will ask for the pain meds you suggested. Thanks for the advice.


Don't be daft, we will have all ranted just the same before we realised it was a case of dose yourself up and pray the time goes quick, I was so ill, was on loads of different meds and lost 2 stone in a few months, kept getting fobbed off and wasn't getting anywhere even though I had endo confirmed by the hospital, I ended up paying private for a consultation with view to private surgery as my brother offered to pay after seeing me so ill for so long, I paid £200 for a 30 min chat and he luckily he did all my surgery as an NHS patient, get a good GP behind you, try a few if you need to, I had a female GP telling me to take ibuprofen, it was only when I saw a male Dr he sorted my meds out, was on







Sure there were more but that's what I can remember xx


And Tramadol! How could I forget those they were a lifesaver! Xx


Thanks Lilly I got some tramadol today from the doctors. I think I'm just abit worried about getting this sorted out. Both of my sisters have had ovarian cancer and all thou the doctors don't think I have it, you can't stop yourself from worrying hey?



I was like that I had cysts and they burst and I couldn't move. Have you asked the hospital to put you on the cancellation list? I was on the list and had an op New Year's Eve.

Hope this helps

Laura x


Hey lauralou, funny you should say that because today I got a call from the hospital saying that January the 17th is the only appointment available so she was going to put me on the cancelations list too just in case so fingers crossed. You must have some sort of mind power lol x



So sorry you are in so much pain.

You must make sure you are under an accredited BSGE Endometriosis centre (government accredited). They will properly assess you and have consultants experienced in dealing with advanced cases of Endo.

There is a website listing the BSGE centres bsge-online.org.uk/

Sadly it would seem there are many gyny's who are not sufficiently experienced in dealing with Endo.

Your GP can directly refer you to a BSGE centre through the Book and Choose NHS service.

They will be a wait unfortunately (NHS!) - keep writing and emailing every week if you need too but at least you will be under a centre that can look after you. You can consider private if you can afford it (looking at £25,000). I can recommend some private consultants who I have heard are good. You could pay privately to see a consultant who works for an accredited BSGE centre then you can have proper support and an assessment - esp around your pain.

Good luck



Meant to say - you could pay for an app with a consultant (who works for an Endo accredited centre - £200 - £300) and then have your treatment on NHS - Jemma x


for me it took 4 years to get diagnosed......nightmare! but since they found the choc cysts in march just gone i was in surgery on the nhs within 8 weeks, very surprised! happy to finally get diagnosed properly and start an action plan, although not a very good outcome, stage 4 and blocked tubes, still undergoing a number of treatments, just glad things are finally moving.

i would phone regularly to hope for any cancellations hunny. x


I think I will defo do that had a horrible night last night. Was being sick every hour the room was spinning I was cold then hot, cramps. I have had all of this before but not as bad as last night. Had a doctors appointment booked into day already so decided to speak to them about it. Turns out my blood pressure was threw the roof and my right side had swollen so much by the time I got to the doctors I looked pregnant. The dr just took one look at me and sent me to hospital. At the hospital I ended up getting a hormone injection in my butt and antibiotics as there are too many white blood cells in my urine. Them shipped of home. If the antibiotics don't work I have to go back and have them via a drip. Oh joy. So tonight I'm hoping I will get some sleep but I do have a soar butt lol. If I don't laugh I will just cry :-/


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