Hey omb,

Your going to be coming to my city!! I'm on the waiting list for the same team. Just a heads up the waiting time is around 6 months but im sure it will be worth it :-) Bristol is a lovely city but parking at the hospital is terrible so leave plenty of time to get there.

I've got my EUA next Friday so hoping for a step in the right direction
J x

Thanks for the update OMB. I was just going to ask how you have been...

Sorry to hear things have not improved much for you yet. Are you still taking the gabapentin? If so, are you still taking the 300mg twice a day? I have been thinking of trying it myself.

Not much improvement for me. Apparently my wound keeps healing but the pain and spasming are not improving much. Although, ironically I think that avoiding my physio has helped some. Don't know what to do about that. Everybody wants to help so bad but it seems they just make things worse. Do you have any muscle spasms as part of your pain? Do you have any difficulty with BMs?

I have also been working on mindfulness, but not enough. I think one has to really immerse themself in it. I hope it helps you.

Hi OMB, just wanted to say sorry you are still in pain, and I really hope that you will find a team that can really help. I feel so bloody lucky to be better and it kills me that some of my dear friends on the forum, who helped me so much, are still suffering.

Ff.... You will have to tell me who you see and what they are like. Not long until you have your EUA and get some answers. Keep us posted. Xx

Msimon.. Yes, I'm still taking 300 mg twice a day. I need to up it really, but it's been the school holidays and if I start taking more in the middle of the day it really spaces me out for a few days until I'm used to it. I'm going to try next week. Saying that I have had a better week.
I'm sorry to hear you are still struggling with pain and muscle spasms. I'm sure physio irritates things too. I have had to stop using my neuro tract machine ( it's a sort of tens machine for internal keegles) as I find it just makes me worse.
I don't have difficulty with bms, although when I get the urge to go, I have to go. I still feel fissure sore, even though I can see I am healed.

Scientist..... Don't feel bad that you have healed... It's so good to have wonderful members like you who stick around after they have healed. It gives sufferers hope when they can't see an end. You are an absolute sweetheart. Xxxxxxx

Small update on me...

I have seen a specialist rhumertologist and have been diagnosed with hypermobility syndrome EDS type 3 ( although I possibly think I cross over a bit to 4 too)
This basically is a genetic disorder that affects the joints ( the hypermobility bit) and the collagen production and connective tissue ( EDS ) it goes a long way to answering why I have not healed very well, and it's taken forever and a day. In future I will have to be operated on slightly differently than others, and stitched up differently using different stitching material. My stitches also need to be left in a lot longer than a non EDS persons.

Ugh.... If only I knew this condition existed 4 years ago when I initially had my hem surgery.... Things may have been a whole lot different.

Other news..... My pain levels seem to have dropped down a notch.... Which is great. I'm still waiting for my pelvic pain appointment to come through...... I feel another nag coming on!!!

OMB xx

That's wonderful that you pain level has dropped. Any idea why? Just about time perhaps...

Hope it continues to decrease.

Oh my word, OMB, that's just terrible luck (the EDS I mean).
I just looked up EDS on wikipedia, and read this:
"Many sufferers of EDS have psychological difficulties as a result of frustration with the medical system and the socially inconvenient combination of appearing normal while being in severe pain."

Ironic, because I think this really describes how many of us fissure sufferers feel or have felt.

What a terrible shame nobody caught the EDS before, because, you are right, I am sure your anal problems would have been treated totally differently if they had known. I am so so sorry.
Glad you are having less pain now though. That is great news. I do hope it continues better!

No real update..... Just checking in.
I have an appointment in July with a dr Baranowski for my nerve damage. I'm really hoping he can help in some way.
I continue to be in pain.... I would say it's averaging out to be worse than the fissure pain. Sitting for any amount of time has become a real issue, but I'm trying to get on with things the best I can.

I will update once I have seen the specialist.

Thanks for the update OMB. I've been wondering how you are doing. Worse that the fissure pain! That's awful.
Is it a different kind of pain or just more intense? Have you increased the gabapentin? Do you think it's helping at all?

I hope this Dr. can help you too!

So, I'll be travelling up to London for my appointment with the pelvic pain specialist on Monday. My fingers and toes are crossed that a plan can be made for me to move forward and get some pain relief and quality of life back.

I'll update when I have more news.