Please help? Nerve damage after hysterectomy

Women's health
1

I had a full hysterectomy in 2013, a full incision across my bikini line. 

As Soon as I woke up, something was not right, I was in excruciating pain every day all day, I just couldn't understand why this was happening to me. 

I could not eat a full meal for a whole year and I was basically living on porridge, cereal and fruit, as soon as I would try eat a normal full meal it felt as though there was a brick in my stomach and my abdomen would swell up so large, people started asking me if I was pregnant.

After months and months of being passed around clinics appointments and surgeons, I had an operation last year to get rid of rotting scar tissue, which in the end only helped me eat full meals again. 

But I am still suffering from this pain all across my incision and abdomen, i cant bear having anything touch my skin around my abdomen, i cant wear underwear and have been wearing maxi dresses for 2 years now, even in the winter in the snow, i just cant see how this is normal, doctors have tried to convince me this is in my head.

I am in the process of selling my business as I can no longer work full time,  standing, sitting for long is just unbearable and the pain is constant like sharp stabbing pains all across my abdomen and incision. Even when I laugh, cough or sneeze. I am so frustrated, angry, upset, and just loosing all hope. 

The pain is the most unbearable thing to deal with, having to wake up knowing I have to get through the day in pain and then go to sleep still in pain, I physically and emotionally don’t think I can go on any longer. 

I am approaching the 2nd year of being in chronic pain 24/7 hours of the day. I feel as though I have completely lost my old life.

After pain clinics, injections, numerous pain killers, antidepressants, i have recently been told I have nerve damage. 

I just want to feel like my old self again, i just wish I never had my hysterectomy operation in the first place, please is there anyone on here who is going through what I am?

Surely I have a right to complain to someone? I cannot for the life of me understand how this is normal, I honestly don't think I can go on for another year like this. 

Please write to me if you have any advice in what I can do next or if anyone has a similar story and have recovered now???

2

Hi Mille

Just read your comment and it's probably the worst story I've heard and for this reason it definitely cannot be right.  I'm not sure where you can go with this now but, being a great believer in complaining whenever I'm not happy with something, I would just start doing that.  Start an official complaint through the NHS channels I did this when my original op date was cancelled and then received private care for free.  Write to your MP (I had good results when fighting for care for a friend's son who had suffered a severe brain injury, and got him moved to private clinic), write to your local paper or even a national paper - they may want to feature it on their health pages.  Just shout as loud as you can to everyone possible.

Sorry I can't really offer anything else but don't give up.

Very best wishes and good luck with getting some help.

Shani

x

3

Hello shani,

Thank you so much for your message, means so much just to read a reply about this, I do sometimes think of doing this as I am so frustrated and cant bear the pain any longer, but I get told there are many cases like mine and that we are the "unfortunate ones", so I just try and brave it. 

I think I will start by writing to my MP

thank you again shani, god bless xxx

4

Hi Mille

My partner says you should investigate making a medical negligence claim.  I know there are a lot of these types of lawyers out there that may not be trustworthy but it might be worth surfing around on the internet for any forums/recommendations from people who have done this successfully.  I certainly think you have nothing to lose.  If you start an official complaint to NHS or write to your MP then mention you are going to start such a claim.   Also, if you write to the NHS just send it to their Chief Executive Officer direct - don't bother with their 'complaints procedure' - you have the right to complain in whichever way you like. Just make sure you have a 'timeline' of dates of what happened and when - like a diary.

Best of luck and I hope you get a result.

Love

Shani

x

5

Oh Millie, you really are suffering, this cannot be right surely? I would definately write to the chief exec of the nhs trust you are under and as had already been mentioned say you are thinking of going for medical negligence, even if you are not.

With regards to your pain, I know you have tried so many other options but have you tried alternate therapies such as acupuncture, acupressure or similar. Personally I've never tried any of that sort of thing so I'm not suggesting that it will solve anything but I just hate to hear of how you are living on a daily basis and want something to ease that for you.

Good luck, I really hope something can be done xx

6

Hi Mille. I also had same abdominal hysterectomy in late 2013 by strong gyno suggestion because I had a uterus full of fibroids. At that time I was suffering chronic low back, and left flank "spasms".. I explained the excruciating pain to my GP and I felt that fibroids would not be causing this type of pain - and I seriously didn't want a hysterectomy and had been fighting it for a few years. In the end I gave in to having the surgery in sheer desperation to rid myself of the misery of the ongoing pain. After my hysterectomy, I was taking morphine based pain killers and praying/hoping that my recovery would be complete and successful so that I could get on with my life. Unfortunately this wasn't the case - far from it. Ever since my hysterectomy I have suffered 24/7 with MORE INTENSE pain than I could have even imagined! It's now July 2016 and my surgery was November 2013. Around 6 months after surgery I went back to my GP... he told me this was "normal" (?) and that it takes about 12 months to fully recover from a hysterectomy - patted me on the head and prescribed a drug called Lyrica - after reading the countless warnings about this drug, I decided - no way was I going to take it; I was already feeling defeated and hopeless and this drug is highly noted for its "suicidal" warnings! So, I went back to he hospital at the 9 month routine check up and was advised that all went well and that they have no idea why I was still in pain - that it was " definitely not due to the hysterectomy" and that I should seek other avenues of help- once again, closing my file, leaving me to feel like I was going crazy - NO ONE WAS HEARING ME! I truly understand (first hand) how miserable and frightening it is to have this extreme 24/7 pain, and fearing getting out of bed etc .. your post struck a chord with me as even as I write I've just taken more pain killers (NSAIDS), and I lie in bed fearing another attack and not at all looking forward to another day. Most nights I sleep around 2-3 hours before the pain wakes me again and then I'm up nursing it for at least 2 hours before I get to try to sleep again; this happens at least 5-7 nights a week - in other words, my life is controlled by this pain that no one in any specialist field is prepared to take me seriously about. I haven't worked since 2012 and now I gave no savings left at all and living on welfare for the unemployed... my life went from luxury to poverty and misery due to that hysterectomy and yet no one will hear me :-( I've researched and read many stories but yours is the only one that seemed similar to mine, only that mine is also unbearable low back and left side spasms (gripping and sharp, dizzying pain) - and it shows no mercy nor any sign of getting "better" - in fact since February of this year the pain has increased in level once again.... I scream out to the Lord for His mercy and healing or at least for some much needed peace and rest - I'm blessed to have been given a strong faith in the Lord as I honestly can say that I would not be here writing if it wasn't for my hope in His promises. On Wednesday I go once again to see my original GP and I am going to demand specialist referrals to gynocologist, neurologist, gastroenterologist, and also a psychiatrist! I will demand answers and I have booked a double appointment- I won't leave until I am heard. I will pray for you, and in the meantime I will hope that somehow you are better now or have found some relief. Please keep in touch. I live in Australia by the way, and I cannot file for negligence due to the fact that the system allows only 2 years in which to file - mine is now nearly 3 years - interesting how the doctors kept telling me to wait... Peace to all. Chronic pain us so complex. It destroys lives; I've lost all sense of dignity, I feel useless, humiliated, embarrassed- and it's so awkward being around friends and family - it's like the elephant is in the room but no one wants to talk about it. Sad. I have so much on my heart about this - I guess I could type away forever, but there's no point; I just want to get on with my life, that's all. I'm now 52 years young, and this all started when I was 47. I haven't ben on a date, or shared any kind if social life for this whole time. Just spend my days and nights praying and nursing my pain. Such a waste. I have so much to offer in so many ways. Losing/lost a lot of time here. Thank you for reading- keep me in the loop please. Big hugs and love your way xx