I have no clue what to do next, I have endo but specialist centre says it isn't causing my chronic pain and they don't know what is.

[Eggcustard]

Well, I have just had my 4th lap (this one at a specialist centre) and have been told they don't know what is causing my chronic pain.

I have had a twisted ovary from a dermoid cyst, removal of the cyst and the ovary, lots of adhesiolysis and was diagnosed with endo last year what was diathermised.

My local hospital could only offer me a hysterectomy so I decided to go to a specialist centre.

I had my lap and saw a member of the team afterwards (not the consultant) who said they could see no reason for my pain. I had the mirena fitted at the same time (have been on prostap for quite a while). The endo isn't back which is good news and for the first time my womb, bowel etc wasn't stuck together. She was going to discharge me there and then but I protested so I have follow up appointment in 6 weeks.

I have no idea what to do next. I have been referred to the pain clinic and they say I have neuropathic pain but the meds aren't working for that either.

I do have scarring inside but after the lap they said they don't think it should be causing the pain I am describing, whatever that means! During the vaginal untrasound before the lap the gynae pressed onto the exact spot where the pain is and still they cant give me any answers.

Does anyone know who treats chronic pelvic pain? Is it a gynae area or is it a pain management area? Does anyone know a good pelvic pain expert? Thanks.

[Dragonparc]

Hi so sorry your in such pain, I'm having a similar experience to you, also on prostap due my 5th injection soon, and its working well but I'm still getting these pains, like stabbing pains and they are usually around my pelvic area but at different parts, in taking naproxen which is helping and tramadol when needed, i too have asked about these pains but doctors unsure what it is?

so i am just putting it down to possible p i d, but have no idea how its treated.

sending big hugs and hope you find some answers

dragonparc. X x

[Eggcustard in reply to Dragonparc]

Thanks for the reply. I am sure my leg pain is neuropathic pain and the pain specialist agrees, but no one seems to know why. It's so frustrating, my life is passing me by, just turned 40 and feel about 80! Keep fight though, we know our own bodies, sending big hugs back xx

[bunnylion]

Hi,

I'm in a similar situation to yourself. I've struggled with endo since diagnosis in 2006. I've just had my 5th laparoscopy where he did find more deep endo to my bowel, rectum etc. but he could not find a cause for the pain I get in my left flank, i've had this pain for 2 years it never goes some days its a niggle, between days 1 and 14 of my cycle its excrutiating, it feels that someone is squeezing me. No painkillers seem to touch it, when really bad I take tramadol but thats only because it knocks me out. My gynae consultant wants me to try cerazette for 3 months, but is also referring me to the chronic pain team. I'm desperate they can help me, I've missed so much work im worried about my job also its now affecting my marriage, my life is disintegrating.

Please let me know how you get on, I have no idea how quick my appointment will come through.

Best wishes

Jenny

[Eggcustard in reply to bunnylion]

Hi, thanks for the reply, I am so sorry to hear you are in chronic pain, it's very tiring. The pain specialist was good and I am waiting now for an injection for neuropathic pain down my leg which affects my mobility, can't walk far at all now. I take tramadol every day and have had to do this for 2 years now, they are starting to not work as well anymore. The pelvic pain for me I think must be adhesions even though they say they shouldn't be causing this kind of pain. The worry I have is that the pain guy has only ever treated 3 other women with chronic pelvic pain, one where 10 mg amatriptyline worked, 1 where pregablin worked and he didn't say what happened to the other one! I have already tried these drugs and they aren't working. Looks like trying to find a chronic pelvic pain expert next. Keep in touch, I found the pain nurse to be very useful, she understood what I was saying, she has a sister with endo.it was such a relief to talk to someone who could empathis a little instead of a man who has no idea at all. I was on cerazette for a few years and it did stop my periods, I still had some cramping but it worked quite well so def worth a g. i feel like i have lost the good things in my life, friends have disappeared, no sex, no alcohol, no nights out, cant work, where did my life go?????xx

[memyselfi]

I have left side stabbing pain too, with no apparent cause. It feels like someone has stuck a knitting needle in me and left it there. It goes right up from the left side of my pelvic bone/vagina to deep inside my left abdomen.

The only suggestion was that it is nerve damage from the laps, but it cycles, sometimes there and treatable with pain meds, but twice a month (ovulation and period) it is so bad it takes my breath away and I can't do anything but wait for it to ease. When it happens people at work say I go ashen

[Eggcustard in reply to memyselfi]

Hi, so sorry to hear this, it doesn't make sense does it? When I came off prostap last time and had a period the pain was excruciating and yet they say there is no endo there anymore. I think it is pain on top of pain. If the chronic stabbing pain is always there, like mine too, then you add on period cramps it all feels worse even though there are 2 different causes. I have come to realise that not all of the pain I have is from endo, some in neuropathic and some adhesions. For me the endo pain is cramping pain and cyclical. I hope you get it sorted soon xx