2 steps forward and 8 back.......

[CP44]

So after seeing yet another dr regarding pelvic/bowel pain, one CT later-normal. Set of bloods-normal, I'm a "mystery" apparently...

Have been in excruiciating pain on and off for past 2 weeks. The pain in lower right hand side of abdomen was so bad I actually thought it was my appendix, again. (seeing as thats the only thing I have left down there!) Dr thinks it's something like Raynauds, all the nerve endings are shot and thats what is causing the pain??? Has anybody else had this diagnosis?

Wanted to put me on Amitriptyline but I've tried that and I cannot function on it. I'm on Pregabalin, nothing works...

There has to be more to it.. I keep getting told that Adhesions do not cause pain, but after 9 abdominal surgerys, something can't be right.

I'm supposed to be starting college next week to complete an Access to Nursing Course, but sometimes I think I won't be able to manage because of how rough I feel.

HELP!! Has anyone else been given this diagnosis?

xx

[Hidden]

Try a sports physio they are very good at sorting out compensation pain and finding the original pain. If medication is not working then it might be a trigger pain - you feel the pain somewhere else from its origin. It travels along nerves.Trigger pain is best treated with accupressure to release the nerve. The sports physio can do this and show you how to do it yourself so you can treat it as it happens.

Drs generally are not too clued up about pain just because its such a random thing and everyone is different.

Good luck

[Hidden]

Another idea popped into my head. Might be worth getting nerve studies done - with the amount of surgery you've had it may be that a nerve got nipped during a procedure.

Really hope its not this.

[jackytap]

I can join you in being "different" the pain is also killing me. I am on amatryptaline and gabapentin,they do not help. Does anyone know about internal Botox injections?

[Hidden]

Appears drs do like to prescribe antidepressant which Ive noted that very few find helpful. Protem plus capsules and lactose free has made thing more manageable. Am elderly so pleased didnt get IBS in younger days.

[CP44]

Thank you everyone for your advice. It's so nice to know you're not alone..

[PPSN_JudyB Pelvic Pain Support Netwo]

CP44,

Are you going to try any of the suggestions above ? physio may be worth a try AND some adhesions do cause pain and can be extremely debilitating.

Jackytap,

I had botox several years a go ( piriformis and internal obturator muscle ) and I'm sure it helped.

[electricjaws]

adhesions do cause pain,the surgeon who removed my bladder told me that as i get them sticking together sometimes and it does hurt,when telling my surgeon at my yearly review,he explained adhesions do cause pain as they stick together

[CP44]

I will definately try to find a physio and maybe acupuncture.

Today I saw another surgeon just to get yet another opinion.... That is an hour of my time I'll never get back. The most unapproachable, unhelpful person I have seen. Told me that adhesions DO NOT usually cause pain, laparoscopic procedures usually DO NOT cause too much scar tissue. Made me feel an inch high. Luckily I have seen plenty of surgeons to now ignore the rude ones... But it doesn't help me any. I now have now truely given up with doctors, It must all be in my mind....

I will now look into alternative remadies into my condition....

[Eggcustard]

isn't it just great when they tell you that you are a "mystery"! I was told the exact same thing. Have you been to a pain clinic? I have been referred to one and am waiting at the moment, because they don't know what is causing the pain (I do have endo and adhesions) they are assuming it is neuropathic pain and want me to try pregablin etc. I have heard that pain clinics can be very good as dealing with chronic pain is a nightmare. I really understand how frustrating it is when you can't do anything and no one seems to be able to help. Sending big hugs x

[CP44]

Thank you eggcustard, a hug is needed!

I have totally given up. After dragging myself off a train last week in agony on way to college, to go to A&E in agony, only to be given, reluctantly, by a junior Dr, pain killers. He looked at me as I was a fraud.

So I think it is time to accept that the pain is in my head, and there is nothing to be done.

I will look into physio, seems the only thing left to try.

Good luck ladies. I hope you are more successful than me.

Xx

[mdonohue169]

You wrote this 2 years ago and I wonder if you have found any relief. YES adhesions will cause this terrible pain. I have the same story as you do since 1996 and today can hardly walk or sit for the pain. But in 1999 I found a clinic who did laser removal of adhesions and it bought me almost 2 years of bearable pain in which I went back to school. Trouble is adhesions return and no one wants to treat this. My daughter's friend (50 years old) had a lot of abdominal surgery over the period of 5 years and was in terrible pain. She retired from the police department took her savings and go a tummy tuck - voila she has almost no pain for time being and has been able to go back to almost normal activities (she was very active before the abdominal stuff kicked in.) Adhesions are serious stuff and doctors don't want to treat it since there is no up side. It's a very tricky surgery if they go in and they are likely to cause more adhesions plus there's the possibility they will hurt you more (here comes the lawsuit.) I am furious that the medical profession does not want to deal with this very serious problem in people's lives and just loves to throw anti-depressants and behavior therapies at you making you even more responsible for your problems and usually even more tired than you were before with the pain.