Firstly this is my gorgeous boy Finlay, who has arrived back from his excursions with the dog walker absolutely filthy and now I can see why 😁He really makes my heart smile and is a real sunshine injection on these dark, wet days of “ summer” in the UK.
Secondly I just wanted to update you all on my trip to the private hospital for a consultation about the awful pelvic pain and severe agitation, jerking, heart racing, sweating and then shivering which leaves me sleep deprived. The Urogynaecologist I saw was 100% sure that my issue is not gynaecological but neuropathy. She questioned me thoroughly firing questions about symptoms I had not got around to telling her. She told me there is no cure and no pharmaceuticals will help but there are nerve blockers in the pudendal nerve through the vagina, perineum or anus 😳 that work for some. She said CBT also can help. She has referred me to an Anaesthetist specialising entirely in pain control and I am seeing her on Tuesday.
While I am apprehensive that this pain will be with me for the rest of my life, at least I now know what it is and there is a hope that it can be eased if not eradicated . I feel a sense of relief to be believed. I had a sense that it was not Gynaecological and the 2 year NHS waiting list made me worry that I would suffer for two years only to find they couldn’t help.
To make you lovely lot laugh I will post a response below with an hilarious photo of Finlay and his pal Loki. He really is a tonic.
Baton down the hatches everyone and stay safe in the storm. Much love to you all xxx
Written by
CecilyParsley
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I can't stop laughing. 😁😁 he is so happy. What a beautiful boy! Lucky both. I am happy for you Cecily that you have an answer for that pain. I hope it magically disappears. x
hi lovely . Your boy is truly so gorgeous and I can totally relate to melting your heart. It amazes me how good at being “ in the moment “ are furry friend are . They just want to enjoy the here and now bless them.
I had followed your posts on the other forum and I am so so glad you have seen a gynae who listened to you and clearly knows her stuff. I totally agree about sometimes just needing to know what’s going on and then we can get our heads around it and deal with it as that’s what we do . I am wishing you all the luck in the world for Tuesday and you’ll be in very safe hands with the anesthetist. Take care 😘xxxx
Ps when you have a spare spoon 🥄 let us know how it goes
Thank you lovely. Yes I know you understand only too well about the relief of a diagnosis however life changing. The love of our fur babies can make us laugh when the our world is full of pain. In that we are both so fortunate xxx
Oh angel I didn’t know we were endo sisters 👯♀️ 😞. Whenever I get bowel bladder or pelvic pain always get that niggly doubt but try and put it to back of mind 🤦♀️xxx big hug
I had pelvic pain, jerking legs and feeling of things crawling on my arms and legs which kept me awake at night. After seeing urologist and gynaecologist both said all clear except extremely dry and prescribed hrt cream. Which made my joints hurt more so than normal. Rheumatologist thought it might be neuropathy and prescribed pregabalin. It took me months and discussing with GP before I would try it as being an opioid. We agreed I’d start off on a low dose of 100mg and work up to where it helped. I’m still a year later only taking 100mg it seems to have taken the edge of everything. I don’t get the crawling feeling anymore and just the occasional pain in hip ( but that could be now to do with spine 🙄) at least most nights I sleep well with no pain or jerky movement. I had a nerve conduction test for carpel tunnel and he said the pregabalin sedates the nerves. I feel like I solve one problem then something else goes wrong, maybe the consultants are right, ‘we’ll, at your age (68) ….. I think not! 😂 I hope you don’t have to wait too long to get some relief too.
Take care, give Finlay a big squishy hug & hopefully a drier day today 😁x
Hi Chris, what a relief that Pregablin worked for you. I am on six Gabapentin which do nothing for the burning or agitation. I was convinced that it was my bowel or More adhesions or endometrial tissue. I am getting crawling in my neck funnily enough too, it tends to abate with neck exercises. I will get some advice on Tuesday as I was considering a Chiropractor double visit to be crunched lol. Neil is out with Finlay now making the most of a dry hour. He just loves cuddles thank you xx
Morning, I feel for you. I have lupus but wanted to tell you about an experience my hubby had. He has ACNE (acute cutaneous nerve entrapment) in his left flank. Imagine sciatica type pain permanently in your side!
It took 18 months to find a diagnosis with many many trips to A & E. It controlled our lives. He was toxic at times. Even strong painkillers didnt really help that much. He went to a pain management clinic. The difference in his ability to deal with the situation was phenomenal. Talking to clinicians who really understand how the body reacts and what practices can be put in place. There is no magic wand but hubby is soooo much better than he was.
So…… best wishes. Stay positive and hope you see an improvement.
Thank you so much for sharing this, it does indeed give me some hope. I am already on Morphine and Gabapentin for pain but it doesn’t touch the burning. The worst thing for me is the agitation and jerking, sweating and lack of sleep. All week I have had nine hours in total. I am a zombie xx
Oh what fun Finlay is having both in the muddy water and romping around with his pal Loki. 😂 He is such an adorable boy and knows how to enjoy himself. 😃
I’m so pleased to hear you now have some answers re the awful pain and other symptoms you’ve been suffering for too long and that there is some chance of alleviating the pain, as unpleasant as the treatment sounds. As you said, you at least know what it is now and what your options are.👍🏻 Keep us posted Cecily with how you get on.
Thanks for sharing the lovely photos of Finlay and brightening my day. 🥰The sun has even just come out to join in. 🌞 Take care Cecily. 💕🤗😘xx
Thank you so much. Yes my boy is such a character and I love him dearly despite having more craters in my lawn than on the moon. I am hoping that Tuesday will bring me some hope at least of restful sleep so that I can cope better with the pain 🤞🏻. How are you doing? Xxx
Haha, so Finlay is a digger. I hope he finds that pot of gold! 😄
I’m not too bad thanks Cecily. The wretched rash returned for a 3rd time before I’d even finished the last course of Pred I was on so Rheumy said to up them again and to stay on each dose for 2 weeks before dropping. Saw Dermy on Friday (after 5 months wait) and he has given me steroid gel for my scalp and hairline and also said to up the steroids from 10mg to 15mg if the rash doesn’t settle soon and advised to taper by only 1 mg each week or fortnight. If this doesn’t work together with the Hydroxy he says we’ll have to consider MTX injections. But he’s hoping it will settle down.
Hoping all goes well for you on Tuesday. I’ll be thinking of you and keeping my fingers crossed she is able to help relieve the pain.🤞🙏🏻
Hi Tiggywoos, no I don’t recall anybody telling me about Dapsone. Is it a drug or a preparation for the skin? I’ll consult Dr Google in a minute and find out.😉 Thanks for mentioning it. I hope you are keeping as well as can be. 🤞 xx
I had a look and it is well worth bearing in mind. If the updated Pred/Hydroxy regime Dermy has put in place for me doesn’t make an improvement soon I’ll suggest it to him. Thanks so much for telling me about it Tiggy. Take care. 🤗 Xxx
Ah no problem at all . I think you’ll find side effects are pretty minimal which is good . You just need a simple blood test first . Take care spotty xxx
Gotta love a spaniel. Utter mud magnets. He looks very much like "What?" "It's not me!" "They told me to do it!" "I'm saaawwwwrrrry!" When my girl was alive, she used to lay flat in the permanent muddy puddle that was always on her walk. She looked like a crocodile with her muzzle in the mud. Couldn't be cross especially when she used to blow out muddy bubbles from her nose. Thank you for your share today. 🙏 Hoping you have some relief from your pain going forward. 🙏
Your girl sounds wonderful. It is impossible to stay cross with them. Our house is built in an area with coal mining and he has dug down so far he is now digging coal.He also loves to “ help” me weed, which involves grabbing and running and he is not discerning lolThank you for your kind wishes I hope so too xx
Aww bless his heart 😻🐶He's loving life!! 😹Our girls getting on now n she's slowed right down (she's 11)Oh my Cecily 🤗Your experiences with this sound awful/horrific!! I'm so glad you were listened too and referred to the appropriate person to help you to deal with the pain . The blockers will be a whole new experience eh? 🙄
Hopefully you will be able in the near future to get a decent night's sleep. I've recently had a bout of insomnia n have hardly been able to function..we need our rest n when we're deprived of any relief every minute of the night feels like an hour doesn't it? Time passes by so slowly.
Insomnia is awful Kat. I am so sorry you have it too. I think fir me the worst part is I cannot keep still. My legs are compelled to move, my heart pounds, I sweat and my nether regions feel like I have a red hot poker inserted. Nothing helps. I even desperately tried to dole myself after five nights with zero sleep and took extra Gabapentin and an extra morphine. All that happened was that I felt worse but still could not t stay still or sleep.I truly hope the Anaesthetist will be helpful and constructive.I will let you know xxx
Thank you so much. Not looking ( or smelling) so Bonnie this morning. I am getting the stink eye because he has been bathed. Strange he loves muddy water but clean water nkt so much lol 🛁 xx
He has mud lumps that I cannot get out of his ears and under his armpits so he will be off to the groomer before his “ big boy operation” next week. Thank you I have seen the pain specialist today and still trying to process everything. She was just lovely and so knowledgeable xxx
Absolutely love the pics of Finlay and to hear about his adventures. Gigi escaped for a bit and returned wet, dirty and with burrs and sticktites.. She is a border collie and has a lot of fur. I was able to get the ones out around her ears and she looks so cute with her ear fur trimmed. Glad to hear you got some answers and hope you get some help.
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Please please help
What a kerfuffle to get an mri scan!!
Is it fibro though?
