In June of 2014, I underwent a partial hysterectomy due to the growth of a fibroid I had been carring around for many years. Unfortunately, it had grown to the size of an orange very quickly, was located outside the uterus, and was barring me from any comfort of sitting down.
After the surgery, I expected pain but also expected the pain to decrease after a few weeks. I kept waiting and waiting, but the pain only increased.
Without going into detail in regards to the gynecologist trying to get rid of me like a hot potato and the nightmare journey afterwards, my first question is this:
HAS ANYONE HAD A HYSTERECTOMY THEN EXTREME PELVIC PAIN IN ADDITION TO PROFOUND STINGING RADIATING FROM THE FOOT (IN MY CASE THE LEFT) THEN UP LEG THEN INTO THE PELVIC REGION?
IN OTHER WORDS THERE IS A DOUBLE WHAMMY OF EXTREME PAIN
MY STORY IS LENGTHY AND I WOULD LOVE TO SHARE. BUT, FOR NOW, I WOULD LIKE ANY REPLIES TO MY QUESTION SINCE I HAVE BEEN ON A JOURNEY AND ODYSSEY SEARCHING FOR ANSWERS. I HAVE BEEN THROUGH IT ALL IT SEEMS AND WOULD REALLY APPRECIATE ANY INFORMATION.
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Dcleary
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Hi. A few questions...what do you mean by a 'partial hysterectomy'? I assume the uterus was removed but how about the cervix, Fallopian tubes and ovaries? Also what is your age, pregnancy history and any other medical conditions?
I still have the ovaries, Fallopian tubes, and will check my records but think the cervix is gone along with the uterus. I haven't thought much about that part since I was desperately trying to find out what the problem was. I had to give up my teaching job and dealing with additional stressors hasn't been easy.
I have been very disgruntled with so many doctors saying I can't do anything else for you, or I don't know what else I can do for you, to a couple of things I won't even say at the moment.
I am thankful I picked up my phone one day to start once again to look for people with problems such as mine. I just gave up a long time ago. I will say misery loves company even though you really hate to hear how others are suffering. Thank you for choosing to correspond with us. Evidently, your heart is in the right place--you care.
I am sixty-four years old. I have had three children with no miscarriages. I was in very good health until this surgery. One of the many, many tests I had after this, a neurologist ran a few and one of them being a test for diabetes. It concluded I was what the numbers suggested being borderline. Each year at my annual checkup, I was tested for this along with the usual cholesterol and so on. It was never indicated that I had any problems until the more in depth test. I suppose the secondary issue with the debilitating stinging suggested a test for this. The Mayo Clinic was too involved with the pelvic issues when I would try to describe where the pain was.
There is so much more to the story, but I won't detail now.
Thanks so much.
Forgot one thing--two of the many tests the Mayo Clinic did were MRIs. One showed I. had "an abundance of arthritis in my lower back."
The doctor who performed my surgery sent me off to a doctor to check my back when I could never gEt well and the pain was only increasing.
That doctor only did x-rays and concluded nothing. I have thought of every scenario possible and wonder if the fibroid could have done any damage. I think I told you about that--but will refresh:: I carried the fibroid around for many, many years and stayed the same unproblematic size.
I began to feel about a month before my yearly checkup something didn't feel right--which is hard to explain.
I told my primary care doctor this and after examining me, set up for an appt where they do an ultrasound while holding a large amount of urine. So, they found this fibroid had grown to the size of an orange and growing outside the uterus.
I have been going to the Mayo Clinic in Jacksonville, FL over the past couple of months, hoping to find answers for my PN pain of 3 years. After seeing a pain mgmt. doctor (who told me to stop reading these blogs) and was not very sympathetic at all, did nerve blocks on 9/19, which seem to have made my pain worse, and simply recommended a 3 week intensive comprehensive pain rehab at Mayo. Long story short, Mayo scheduled the program for me, beginning Oct. 25 and to commence on Nov. 15. I have been waiting, but did not receive confirmation that my BCBS ($1200 per month individual healthcare plan, that was supposed to "cover everything") approved this clinic, so I finally called today, only to find out that I would still be responsible for a $450 per day co-pay!! I am sorry, but I felt this was highway robbery! I am at my wits end, and in sooo much pain, and once again I do not know where to turn next. I am soooo depressed today, and I am finding it harder and harder to deal with this
I will say the Mayo Clinic is a great hospital, but I was given the opportunity such as you to sign up for the three-week comprehensive pain management clinic. I won't go into prior details of what I did on my 12 visits in 10 months. It would take too long for now. All I will say for now is I had multiple tests since they accept no prior tests results from anyone--which is great starting off with a clean slate. I saw a female gyn, a doctor for something else, then to pain management. Did you perhaps see a Dr whose lat name begins with an O in PM? I understand the frustration of the pain, and they want to teach you how to live with it. I'm not sure how that works, but now, I think I would have slept on a bench to try and see if their way worked at all. I would have never began taking pain meds since I didn't know the effects of them. I wanted to tell you a little about myself so that you may be able to tell me more about you. It is never pleasant to hear how another person is hurting, but if we share our stories, someone small things may help another. Exactly, how did you receive your diagnosis? They called mine pelvic neuralgia which is a safer term and a broad umbrella covering multiple things. Strange, my symptoms are the definition of pudendal nerve entrapment. Also, have you been to the therapist that goes to the nerve and finds the trigger points releasing the spasms? Bless you and know you are not alone. Please let me know how you are.
OMG, yes I did see a "Dr. O" in PM! I found out just yesterday that my insurance will not cover a large portion of the 3 week program, and can't really afford that right now, so I am feeling very discouraged, and trying to figure out my next step. I have not seen any pelvic floor physical therapists there yet, but I would be interested to hear about your experience as I am sure that is where they will send me next. ALL of my symptoms point to PN/PNE also, and I really resented "Dr. O" telling me to stop reading blogs! I would love to talk to you, if possible soon---before I have my follow up with him! I want to weigh my options, and have to figure out what to do next! I am also very flared up after the nerve block injections on 9/19 and in even more pain than usual. I have read a couple of articles about that on another forum as well. I agree that it is very important for people with this condition to share their knowledge, because this is such a little well known condition, and a very tough one to live with! Please private message me if you would be willing to call me
Thank you so much for taking the time to respond to me!!
I'm not sure how to private messageon here. I found this site awhile back. I was so busy hurting and trying to go from one doctor to the next and holding down a teaching job, I never really looked for Web sites like this one. Did you see a gyn at the Mayo Clinic? That was my referral to the therapist. I had to give that up due to the costs plus it was an hour to Savannah and an hour back.
But, I had to break the ice with Dr. O since he was pretty frigid at first! I have a picture of he and myself at the end of the tour for the 3week pain management program. He really pushes that, but I just couldn't quite understand how they can teach you to live with chronic pain. I'll try to figure out how to private message. IT is 4 am and maybe another sleepless night. I have never had sleeping problems until this happened.
I am so sorry that you are having trouble sleeping In order to private message, click on your screen name and then a drop box should come down. Click on message, and then you can put my screen name in and send me a message--it took me awhile to figure it out. I know all too well how it's all I can do some days just to get by I did not see a gyn there as I came to Mayo with a PN diagnosis, as I had already seen 3 urogynecologists as well as a gyno.---I have a huge binder with every test, scan, ultra sound, treatments etc.., so all I had to do was get established with a primary care doctor there, and then she made the referral. That's how I saw "Dr. O". I totally agree with you about the 3 week program he was pushing and I opted not to do it either. I am moving on with other options. I lived in Jacksonville for almost 30 yrs.,and then had to move for my ex-husband's job. I moved back in July, hoping to have better treatment options at Mayo and the state of FL. I will private message you with my phone #, so let me know if you were able to find it in your messages. I think you should see a little orange icon on the bell at the top of your screen (to the right of communities). I have an appt. this morning, but should be available most of the time today. You can also text me to arrange a time to talk as well. Hang in there
Hi sorry for all your pain i to had a hysterectomy and many other gyn surgery and I blame that for all my problems today the surgeon stitched my urethra I was rushed back into hospital and was told I might lose a kidney but lucky it did Not
come to that and I blame that on all my problems I have today thinking of you. Janebee
Hey, I hope you are doing well Janebee. Do you know if these messages can be pulled up from a couple months back? I saw, around that time frame and when I first found this site, a few messages about hysterectomies then pelvic pain occurring. Thanks for any info
Thanks for the response. I found more info on this site about hysterectomy surgery causing pelvic neuralgia and/or other problems. I was going to write down some of this but lost my history info. I hope it's still posted since it's been a couple or so months back. I have had severe stinging beginning at the bottom of my left foot radiating up the leg into the pelvic area. Two whammies of pain. Do you have anything like that? Sorry you live like a lot of us. People can have no empathy or sympathy and doctors can say it's in the head. Hope to hear from you again.
Hi Dcleary I don't have the pain on my foot radiating I have severe burning inside and outside the vagina which it most impossible to sit i have no pain when I lie down or stand and spend most of the day in and out of bed when the pain gets to severe and it's making me so depressed.I don't know how many GP and consultants have said it can be all in my head how is pain as severe as that all in your head it gets to the stage you don't know where to turn to next.I will be thinking of you all my love. Janebee x
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