Just woken up
With excruitating pain on my tummy, pelvis and bladder. So much so I was dreaming that I was running and collapsed due to the pain and woke up and it was real. No painkillers work, so refilled my hotwater bottle. Is this normal for this type of cyst? If that is what it is. I had lap in 2012 and had stage 2 endo removed. Currently got mirena coil in since May. Any advice appreciated xx
Hi Yellowrise. Thank you for your reply. It's much appreciated. The ultrasound says 4cm x 4cm x 2.5 cm if that means anything to you. With pain i had last night it feels like it's 10 cm. it's still really hurting. I was scared in the night. Didn't know if i should get to A&E or not but thankfully by hot water bottles numbed it a little, but i can't take that to work. I am going to see if i can get an emergency appointment at the doctors this morning to see if i can get something to help til I see the gynae. I am currently waiting for one consultant to send the referral letter to my gynae to my insurance company. Well his secretary. She doesn't sense the urgency at all. I think axa ppp are trying to wriggle out of paying which is worrying too. Either way i need to know so i can speed things up with the NHS otherwise.
All your info is really helpful. Thank you. Sounds like you have been through the wars too. I can't believe it got so bad you had to leave work. This also worries me too as I am constantly ill with one thing or another and nobody gets it, although they do try.
All my symptoms are pressure on my bladder, lower back pain, leg pain, pelvic and tummy pain, shivers down my leg, random twinges and pins and needles down my leg ( all left side which is where the cyst is and my endo) and more recently pain all up my back and neck, again all the left side. Is all of this normal?xxx
Ps. I don't get periods as am on the Mirena but the pain is pretty constant albeit at the moment it is particularly bad x
Hi Bez76,
Sorry to hear about your pain.
Re AXA PPP trying to wriggle out of paying, leave this to your consultant. He/she will be able to spell it out very clearly to them and shut them up. I never even bothered trying to fight with them and got him to do it for me.
My consultant's PA is so slow too. She really only works for him part tim. I always get an answerphone and it takes until the following day to get a call back. Bet you it's the same one!
Hope you managed to get something for the pain.
Take care x
Sorry for the late reply!
Finally got a referral letter from the doctor and axa has approved me, so i see the gynae on Monday! Yey! A big relief. My last lap was NHS but i was lucky and got it done in a private hospital. I didn't even think of private at the time, despite having cover through work.
I really had a bad few days but feeling a little better but currently my leg is aching like mad, and feels shivery and warm! Just boiling the kettle for my hot water bottle! I my legs fo feel funny. On tuesday i felt like i was walking everywhere in slow motion!
Thanks for all your advice and hope you are ok and not in too much pain xx
Hey I hope you are feeling better now. I have been and
Off all week. Gynae appt tomorrow thankfully. My leg was so bad yesterday it seemed to be shaking by itself and felt like it was going to give way. Today i had the most weird excruciating pain from my lower back at the left said to my right. Ovet within seconds and then happened again. I screamed and my poor boyfriend didn't know what was up. Then thankfully it never happened again! Do you ever have this. It felt
From my sciatic nerve.
Ps. Sounds like you have a very attentive man. A keeper! X
Well, I have been to see my gynaecologist. He is such a lovely man. He wants me back in for a laparoscopy next Friday! He said as the cyst is 4cm, it's not that big and normally he would say go for another ultrasound in a couple of months to see if it had disappeared or still there, however due to the vast amount of pain I am getting, he needs to investigate as it's quite clear to him that the endometriosis has come back. I feel better about that. Just got to get confirmation from AXA as they are now saying they want a letter from the consulant confiming it isn't treatment for fertility but his secretary is off sick. What a pallarva! They even said to me it is clear that it isn't but we just need double confirmation. For goodness sake, I have the coil in and it says so on my records. I have been worrying about work, as in having more time off, but had a chat with our new team leader today and she was brilliant. She knows a couple of people who have endomertriosis quite badly and she said don't worry about your work record, it's a recognised illness etc. and just to get better and have the op if needed. Such fun!
When I told the consultant about the electric shock pain across my back, he pretty much said the words at the same time as me, so it's obviously pretty common.
Hope you are feeling more pain free this week! 
Has anyone had the mirena coil and still experiencing endo pain?
Has any body been to the Chronic Pain Team? 
Been advised to see a Chronic Pain Specialist and suggested the Coil... 
4 weeks after lap and pain is getting worse, is this normal?
Has anyone every been in that much pain they have gone into a&e for help and what was the reaction? 
