Finally getting help after a year of pain following a hysterectomy.

[CatJan72013]

I totally thought I was losing my mind. I had my uterus and cervix removed due to large fibroids. The gyno said that he had a very difficult time removing the uterus and said that I had a lot of adhesions from previous surgeries which have never bothered me. I had an area that would not heal and had to have it packed for 6 weeks. Months after, I kept complaining that I was still in so much pain and the doc kept saying I was still healing. It started in my lower back and into the pelvic area and had to go to the hospital many times for a shot of morphine. Which then resorted to taking morphine at home to manage the pain. By this time depression also set in and I thought I was losing my mind. Finally they did a CT SCAN and an Ultra sound and discovered a blood filled cyst on my left ovary. My gp sent me to a gyno that I requested thinking this was a problem to my pain. But the gyno said the pain I was experiencing was not caused by the cyst ... as the pain was now chronic. It had been 10 months since my hysterectomy. She diagnosed me with neuropathic pain (something I had never heard of). She sent me to a pelvic floor clinic for physio and started me on Lyrica. I told her I was worried that I had more adhesions because of my surgery. She said that the Lyrica would also help for this type of pain also. Honestly, I went into this thinking negative as this sounded so questionable as I have never heard of this! Well ... 4 months later I am finally feeling that the pain is under control. Not that I do not experience any pain ... but it is manageable. Has anyone been on Lyrica and am wondering if this is something I have to be on for the rest of my life?

[paulyne]

I had a hysterectomy in 2001 due to a prolapse, then 8 years later I had a further prolapse which resulted in further surgery. I woke from the surgery in agony. I couldn't get anyone to believe I was in such pain, the hospital insisted all had gone well. Because of the hospital insisting everything was fine, it was an uphill battle to find out what was wrong. One year later, I was suicidal, then my gp got involved and put me on gabapentin but changed it to lyrica as gabapentin made me very constipated. Apparently gabapentin is much cheaper than lyrica and that's why they normally try you on it first. I eventually found out I had pudendal nerve entrapment. So, I know what you mean about losing your mind.

I've been on 150mg lyrica (also on the back of packet called pregabalin) about 4 years and I also take 10mg amitriptyline at the same time. I take this dose about 9pm and although it is apparently a smallish dose I really don't want to up it, although I know some people take 600mg but I'm dosey enough as it is. Sometimes when I feel very uncomfortable I've been tempted to but I find it hard to wake up in the morning as it is, so I don't think I'd be able to function on a larger dose. I don't think there's any problem staying on this medication.

X

[Poppy26]

I really sympathise, I have been in chronic pelvic pain from a hysterectomy 8 months ago. Like you was initially told adhesions etc and was prescribed a whole array of medication but to no avail. After depression, desperation and sheer bloody mindedness I was able to get a diagnosis of bilateral pudendal nerve entrapment. I had surgery in th uk 5 weeks ago and now recovering very slowly. I was on Lyrica for a month prior to surgery 450 mgs per day, I am now on 600 mgs per day and have been told I will need to take this for at least 6 months . Everything is very sore and painful at the mo but 3 weeks ago I forgot to take my nightly 300 mg tablet and next day was crying in agony. I guess I am dependant on them at the moment and thankfully they seem to be agreeing with me. How long do you need them for and what is your prognosis for recovery?

[CatJan72013 in reply to Poppy26]

Poppy ... I have no idea about recovery??? It was never explained to me. All I was told was it was neuropathic pain and I needed physio and she put me on Lyrica. Were you ever told why you have this problem ... was it because of the surgery? I am glad you were finally given some answers and treatment!

[Poppy26 in reply to CatJan72013]

When I first saw the consultant/ surgeon he told me the hysterectomy could not have caused this . However after pudental nerve surgery and I had a follow up consultation he had changed his tune and conceded that hysterectomy had contributed and he said he needed to open his mind and do more research. I have never in my suffered with this chronic nerve pain, came on immediately after hysterectomy. I feel passionately that awareness needs to be raised in the medical profession as this awful condition is completely life changing and could be prevented with the correct care and consideration during gyny surgery and while patients are under a general anaesthetic . What are you going to do next ? Are you still in chronic pain?

[CatJan72013 in reply to Poppy26]

No, my pain has eased ... still have some pain and if I over do things it does get worse. I think back to after my surgery ... I could not believe how much pain I was in and I have had other surgeries before and never felt this way. The surgeon did tell me that he was rough on me as he had a hard time getting my uterus out because it was so large. So this really makes me wonder.

[Dandielion in reply to Poppy26]

Wow... Its reassuring ( in such a selfish way ) knowing others have the same problems... If I'd have known now what i didnt know then, I don't think I would have gone through with it. I did live in pelvic discomfort but nothing like what I live with now. The pain can be so disabling, which brings on depression in return depression stresses the body and it burns/pains us even more. . All over not just in one confined area. Most recently (9) days ago I had intercouse with my partner and bled for the first time since 2009, Along with severe abdominal cramping. I dread the ER so I waited it our for his next available when he asks me ...ARE YOU SURE THIS WHERE YOU WERE BLEEDING FROM!!!😖 I didn't even argue. 4 days of it yes I know where it came from. The he says that my severe lower pelvic PAIN was brought on because of my fibromyalgia and stress, maybe my psych could prescribe something for your pain??? Again I just agree, I'm in to much pain to even put up a fight. Just for the hell of it I ask my psych she looked at me like i was CRAZY 😜😜... Since the hysterectomy I have to catch myself 6-8 times a day because sometimes I just cannot pee... NEVER had any kind of problem like that before. I've caught 3 septic infections, now have a "mild" liver problem, extreme widespread body PAIN.. My prayers are for all in chronic pain to be freed 💘

[Poppy26]

Makes me wonder as well. Glad pain has eased and hopefully you can start to enjoy life again. Please let me know how you get on as awareness does need to be raised. I wish you loads of luck and keep smiling. X

[CatJan72013]

will do Poppy and I hope you r finally on your road to relief too