Flare ups

[Sadielee1608]

Hi,

I suffer from Chronic Pelvic pain syndrome, most of the time I am ok but I get flare ups so bad I can barely stand. I have been through gynae and urology investigations and it is not caused by IC or Endometriosis, My pain consultant says it is nerve related.

I have tried amitriptyline, gabapentin, Duloxetine and morphine based meds, little relief from any, TENS machine and hot water bottle gives some relief, but I am desperate to try and stop these flare ups and carry on working.

Does any one have any ideas, any would be greatly appreciated.

Thanks, S x

[nolaglen]

I feel so bad for you and can relate to your pain. I too have chronic pain deep in my vagina and often in my rectum. I thought it was endometriosis and becasue I have I history of it reoccurring............so even after a hysterectomy in 1987. I had endometriosis again in 1991, and again in 2003. It started having some discomfort in 2012 but 2013 has been hell. I did go in for surgery but they found no endo. I am at my wits ends some days. I am told it is most likely nerve related. I am on gabapentin and hydromorphone. It helps but is only a band-aide. I take lots of hot baths and I use a bean bag that I warm in the microwave for a couple minutes and that is usually the best help. I use these round the clock. I am waiting to get into the pain clinic here, long long list so I don't know how long I will have tot wait for that. We obviously need more pain clinics.

Where is your pain? Can you describe it for me. My name is Nola and I live on Vancouver Island, Canada. Where do you live?

[edythe in reply to nolaglen]

I wonder where you are located and what Kind of doctor you have seen. It would most certainly be worthwhile to find a physiotherapist with experience in treating chronic pelivc pain. They can do trigger point release, coccyx mobilisation and use other useful techniques which help to unknot the muscles, which in turn releases pressure on the various nerves in this area. You'll fnd that there are quite a lot of posts on the subject on the Network. I hope this helps!

[Sadielee1608 in reply to edythe]

Thank you Edythe,,

I am in East Sussex in England, I am seeing a pain consultant who is also an anaesthetist, and I must say she has been fantastic, but mainly drug orientated and I get so little relief from them compared to the side effects, plus I would like to think about starting a family soon and they are not advisable in pregnancy, so I will ask her about Physio and she if she can organise this, Thank you so much for your advice.

[edythe in reply to Sadielee1608]

Hello Sadielee,

I suggest you take a look at the Website simplywomenshealth.com. There you will find out about Maria Elliott and Helen ??. They practise in London (Harley Street and Barnes) so should be reasonably easy to access from East Sussex. I actually live in Germany but had a session with Maria about 15 months ago when I was in the UK and she was very helpful. From what I have discovered there are not too many qualified PTs in this field but the UK is better than Germany!

I have had pelvic pain for about 18 months now and have been very up and down but manage on Ibuprofen. Relaxation of the muscles is most important but requires time and patience! This is not always easy!

Good luck to you.

[Rosie81 in reply to edythe]

Rosie81 please look up my recent post and pass it on. thank you

[Sadielee1608 in reply to edythe]

Hi Edythe,

I have looked on the website you sent they are close to me, I have contacted them in the hope they can help. Hope you have had some relief.

Thank you x

[Rosie81 in reply to edythe]

Rosie81 please look up my post and pass on news. thank you

[Sadielee1608 in reply to nolaglen]

Hello Nola,

Thank you for replying, I live in East Sussex in England. So sorry to hear you are also experiencing this sort of pain, awful huh?!

My Pain is typical of Interstitial Cystitis, but many Urology consultants tell me that it is definitely not. I have pain that radiates from my pelvis down into my vagina and bladder, it is worse when I pass urine. But yet never a urine infection. I know that there is things that make is worse like caffeine, sex, dehydration etc. etc. the list goes on!

Hot water bottle is great, but I have to hold it between my legs which is only OK at home, wouldn't look great at work (I'm an A&E nurse!).

I am 25 and started having this pain 8 years ago, after being passed from Pillar to Post through Urology, gynae, psychology (yep, it was in my head!) I finally managed to get a Chronic pain referral after 5 and 1/2 years. My Chronic pain consultant is fantastic and as a result I was also sent to a nice psychologist who believed me and counselled me through how the pain effects my life and relationships and we talked about how the fear of the pain is disabling in itself. My pain consultant has made a real difference and given me hope, I really hope you get to see one soon. I completely agree though that Chronic pain clinics need more funding and there also needs to be a change in the way health professionals view chronic pain, across the pond!

I am really keen to come off the meds due to plans to start a family, but at the moment I am in so much pain I am desperate for any answers/options.

Take Care, S x

[nolaglen in reply to Sadielee1608]

thanks for your reply. I am so sorry for all you pain, can you reach out to your husband for support?. I know mine is so so supporting and I am so blessed that way.I too have to hold the heating pad between my legs or i sit on it to. I use the heating bean bag that I put in the microwave for 3 minutes and they work great, they are flexible sort of like a blanket. Heat is a soothing natural help. I am so sorry . Are any of the meds you are on ok to stay on while carrying a baby? What meds are you on for pain? What did the pain clinic do...besides the referral to the psychologist? It sounds like you really happy though with the pain consultant..................hope it important...your young...hang in there and continue to hope and try other treatments........acupuncture? that is what I am going to try next. Good to talk to someone else who knows their pain in not all in their head. when something physical cannot be found people immediately think it must be in your head. I try to explain that nerves overfirinig are most likely the culprit but I sometimes wonder if that is used too much. It really feels to me like the pain I had with Endometriosis....I also have MS. I deal with that fine but this relentless radiating pain between my vagina and rectum is what puts me over the top. Try to do something to focus on to taking your mind off the pain. It does help!. Without my meds I don't know where I would be.It is not a fix only a band-aide but I can't take off the band-aide I am sure you probably feel the same. Check with you pain consultant...what do they advise as far as getting pregnant and what you could do for the pain? You are so young, I feel for you.! I have a daughter 28 who has severe fibromyalgia and she too wants a family but she doesn't know if that is realistic for her situation. Have they done any investigative surgery? Have you had a pudendal nerve block test. I was hoping for that but they said the temp block didn't help me so not that. sounds like a tremendous amount of women out there suffering. they need to do more research on nerves and why they fire for no real reason. Its is a viscous cycle for the nerves...they don't know how to stop firing. the Brain controls that. It is a real nightmare to have to be in. Take Care, Nola

[Rosie81 in reply to Sadielee1608]

Rosie81 please look up my recent post and pass it on. thank you

[whittle1 in reply to nolaglen]

hi nola i have been diagonised with c.p.i.d i collaspe last july i was in a coma for 36 hrs i had a severve blood infection my tubes are mush as it was explained to me i have tissue scarring swollen ovaries ,the pain is unbearable most days for me i carnt walk or really take care of myself in most daily things im going into hospital for a full hysterectomy on december the 10th 2014 hoping so much this will improve my health my pain is my left leg and side and back more than my right i have spasms of not going tolite as easy due to the tissue scarring my periods are heavy ,bad clotting and i can have 3 bleeds within a month then the pelvic pain feels like ive been kicked and i have to catch my breath i really do feel for u keep nagging .

[Rosie81 in reply to nolaglen]

Rosie81 please look up my post and pass on the news please

[Sky58]

I sympathise. I am just recovering I hope from yet another flare up. I am now on pregabalin and use tramadol in a flare up. I have been to an osteopath who does myofascial release ie presses on trigger points which gives some relief. However this is only very temporary and am desperate for a better solution. Am thinking of Physio but it's knowing where to go and what's availabe. Hope you get some relief

[Sadielee1608 in reply to Sky58]

Hi Sky58,

Do you have a pain consultant? I feel she is going to be my best chance for the Physio option. I think my GP would wonder what on earth I was talking about!

The Osteopath sounds interesting though, thank you. I'm just sorry to hear that you are suffering and that you also get little relief from management options.

Take Care, S x

[Sky58]

I am under Dr demello in Manchester . Have only seen him once. His Physio gave me an internal examination and I have had agonising flare ups ever since. I really want to find a physio who works externally at first but who understands the nature of the condition. Since seeing the pain specialist my Gp has switched me to pregabalin and oromorph. I am seeing Dr demello next week.

[Sadielee1608 in reply to Sky58]

Do you know I had Lidocaine and Steriods injected directly into the site of the nerve bundle expected to be the cause of my pain and the next day I thought I was cured, life was wonderful pain gone completely I was alert and everything was brighter (probably the steroids!) but the next day and for 3 weeks I was in agony. Annoying that things that are supposed to help us are so unpredictable that they can make it so much worse Hope you get some answers at your appointment hun, S x

[Rosie81]

Rosie81 please look up my recent post and pass the news please