15 months post hysterctomy and severe burning pain

Women's health
1

Hi,

I'm 15 months total hysterectomy with ovaries and cervix

removed due to sarcoma cancer of womb. I'm in severe

burning pain in my abdomen. 3 months post op,

2 long lumps appeared at either side of my wound

which were very painful and tender to touch. Gyna

had referred me for nerve blocks. Have had them but

I feel my stitches ripped as my the muscles above bikini

cut were very tender to touch and felt raw. I have one

very sore piece of hard scar tissue above wound. Very

tender and painful to touch. On right side it's like a spasmed

long lump that comes up and it burns like as if someone

has put a match to my skin, I suffer from chronic back

pain also with buring pain all into my spine.

Doctors are brushing this off as in my head but I can't

Walk around the kitchen without being in severe burning

pain in my stomac and radiates down into both thighs.

Can anyone please advise me what to do..? I was cut twice

bikini line - myomectomy for large fibroid then 8 wks later

hysterectomy due to cancer. I prob shud have left

Hysterctomy till later on but I panicked. I'm 42 years old

and my life is non existent as I can't go out socially

anymore with pain. I sleep 1 or 2 hrs a night - am awake

with pain - burning and sharp pain into abdomen

and spine.

Please help.... I must have overdone recovery and

caused serious damage inside me to muscles to be

in so much pain.... Can this be rectified if stitches ripped

how would you know....???!??

2

I am so sorry to hear that you are also experiencing burning pain. To me, burning always signifies nerve

damage. It seems unique and no other pain is quite like it.

It is now 1 1/2 years out of my total hysterectomy for endometrial cancer and I am in awful burning pain. It is in my groin, radiates down my legs and sometimes goes full body. I had been diagnosed with Reflex Sympathetic Dystrophy (now known as Chronic Regional Pain Syndrome) which had been basically confined to my upper body until this awful surgery. Almost 1 year to the day, the burning in my groin and legs started. It is like I am on fire, though sometimes it does let up. In my case, I am sure that the invasive surgery, which involved cutting through nerves, caused my RSD to spread. RSD is the first thing that comes to mind when I read your post. There are other things it could be, but nerves do not like to be cut and when they regenerate they are angry.

Some days every scar hurts with a tearing kind of pain. I have a keloid scar near my naval where they put the camera in (had robotic surgery) and every day it pulls, feels like it is tearing and it is always painful to the touch. Could those long painful lumps be keloid scars?

You may also have adhesions inside from your surgery. I just read where 50-100% of women do get them.

I'm sorry I'm not much help but your story really caught my eye because of mention of the burning pain. Do look up RSD, it may help. Also, there is a wonderful website called HysterSisters which has marvelous forums for women who have undergone hysterectomies (or will be) for all sorts of reasons.

IMO in some women (like myself who already had chronic pain issues) hysterectomy is simply horrible as to what it can do to the female body. There are other issues but I wanted to write that I too have the burning. I am not a professional but from years of experience I know when my nerves have been damaged and the consequences of this. I can't even wear jeans anymore but must wear very soft fabrics because my skin on my legs is now so sensitive I sometimes want to scream.

Please know you are in my thoughts. Perhaps it is true, the cure is worse than the disease. Respond if you like. Either way, I do wish you luck and maybe the passage of time will help us, though to me it is getting worse. Best regards,

Sharon

3

Thank you so much for replying... I thought I was going mad...!! I had open surgery twice in 2 months and I'm in chronic pain ever since...!! I can  hardly walk at this stage the burning is 24/7 except when I sleep for 2/3 hrs at night. I've spent most of the last 2 year on the couch or in the bed. I can only assume it's adhesions which was something I was never told about before surgery. I was fine before surgery with the exception of my back but I'm in chronic burning pain since and it's like as if something is twisting inside me as I sit. I also have loud bowel sounds after eating or drinking and my stomac bloats also... It must be adhesions. I literally can't move much now and muscles are wasting away as a result of inactivity. I've tried my best to get moving but just am in so much burning pain even sitting and resting - my friends don't understand this at all as I'm not myself anymore and I've been told to "de stress" myself... How can you do that when even turning in the bed causes the severe burning pain...?? And I break out into a sweat with it...?? I wish to God I'd never had to have a hysterectomy as its a nightmare to be like this and no cure either. I feel for you also as you know what it's like to be this way too... Those that recover with no nerve pain afterwards are blessed ... I've also been told that all pain isn't bad...!!! Those that said that to me have NEVER been in solid pain.... 

4

I too wish I had never had it done.  Looking back, I was not a candidate for such invasive surgery as I already have had RSD for over 12 years, which began after operations on my broken wrist.  When I went to the hospital it was shocking how many nurses and DOCTORS didn't even understand what I was talking about.

Up until the surgery I was at least able to exercise, take long walks etc. thanks to pain meds and just my will to try and be as healthy as possible.  Since then there has not been one day gone by that I'm not in agony of some kind.  Let alone the fact that the supporting structures that help keep our bodies moving naturally were ripped out of me.  The heating pad is my best friend.

BTW  RSD is also known as CRPS or Chronic Regional Pain Syndrome though why they would put "regional" is beyond my understanding.  Please go online and find more information (so you can prove to the disbelievers that such a thing exists) and also try to find a doctor who can help.  

That bloating you mention is one of my nightmares.  It is not fat or gas-I wish it were than I could work on losing it-but I've read that it is tissue swelling from the surgery and there is nothing that can help.  When it goes down my clothes get very loose but then it swells again.

If you are on Facebook there is a group called "Hysterectomy Consequences".  On the internet is HERS Foundation, which is taking a stand against this female castration.  Regardless, I think most of us can say we were never given a full picture of the consequences and after effects, partly because IMO they know a lot of us would have reconsidered.  Sometimes it is absolutely necessary, but at other times there might be other alternatives.

Hope you find some comfort in not being alone and also in getting some help for that horrid burning.    

5

I am also suffering from nerve pain after a complete hysterectomy, biopsies for ovarian cancer, and appendectomy.  No one ever told me of the chronic nerve pain that also is effecting my ability to function especially walking.  I do take lyrica for the nerve pain and it does take the edge off allowing me to work; which does not involve a lot of walking.  I have been to several specialist in the US and it does not appear there is much to help.  They are not sure if it is adhesions but they believe it is along with nerve damage from an extensive surgery.  I am happy to be alive but it is so difficult to deal with the limitations from this pain.  You are not alone in your suffering but I wish there would be a physician that would specialize in helping women with this side effect of hysterectomy.  I take Lyrica 25 mg one during the day and 75 at night; along with Ultram 50mg 1/2 tablet twice a day.  If I take any more during the day I would be too sleepy to function.  It does not take away the pain totally but it does help enough to help with some functioning.  But if I walk or do any activity even standing too long will make it difficult to function as it increases the pain.  You and other women are not having this pain in their heads but we get treated sometimes as it is which does not help to make the medical profession work to help find answers and help.  I am told if there are adhesions and they are surgically removed they may just grow back or even be worse.  I feel burning, pain, tearing sensations with movement in abdomen, pelvis and groin then radiating pain to legs.  It is awful and has caused me to not be able to enjoy any activities or the life I use to have.  If anyone know of any one that can help we all would deeply appreciate relief.

6

Thank you so much for your reply. I'm very sorry for not getting back to you until now but I'm just trying to get through each hour of each day as best as I can....

It's not easy at all... Life has just changed so much ... I do hope you are finding some relief yourself in all of this... 

7

I feel burning, pain, tearing sensations with movement in abdomen, pelvis and groin then radiating pain to legs.

That's exactly what I have and it's brutal... Just because you aren't wearing a bandage or using a crutch, people think you are grand and don't believe you at all... Unless you are in this situation, nobody understands at all... I can't even sit much at this stage as the pain is unbearable.... It's hard for people to be around when you're not the person you used to be - they think you're over dramatising everything. I would love if they would swap places for just a day and then they would understand the difficulty it has caused... Life does not move on at all... I'm on Lyrica myself - dulls it a bit but when wears off, I'm in bits... Used neurontin but no benefit.... 

8

Please do not feel you ever have to apologize for not getting back to anyone right away.  You are right that sitting also is difficult.  I am limited on time to sit, stand and legs and feet have to be up to get a little relief...even then sometimes it does not help.  Neuroton did not help me either and now the insurance company is needing prior approval on the lyrica.  I never thought I would have to be dependent on a medication to help the pain even a little.  You are right that when it has worn off it is burning tearning pain that is worse.  Sometimes the lyrica helps a little and other times hours later there still is not relief so I then take the Ultram and hope it will help.  I am not sure why this occurs to some women and not others.  It is heart breaking and you are right when you look ok on the outside others do not realize the extreme pain...they would have to trade places to believe this pain. 

     We even traveled to the Mayo clinic in the U.S. and a neurologist there said I had arthritis of my hip causing the pain...I am a really nice person but called him an idiot!  It is hard to believe that many in the medical profession is so unaware of this problem, that it exists or how to help.  This is definitely nerve pain but the cause may be from surgical cutting of the nerves or adhesions.  Either way...I just wish they would find a treatment that would help to cure this.  My life as is yours and others is very difficult and it is easy to be depressed as one is not the person they were before being able to move and not be in chronic pain.

9

Hi. I can relate to what you're going through. I had an abdominal hystorectomy 8 mos ago at the age of 32. The pain has gradually gotten worse. There is excruciating pain in my abdomen and into my groing and legs. It is burning pain and often spreads to my whole body. 

Is there anything you've found that helps? This has gotten excrutiating and has stolen my life from me. The surgical induced menopause is horrible, let alone the pain. I was referred to a doctor for nerve injections, they helped the pain temporarily but I reacted to them and it made my health worse..

I'm sorry you're having to deal with this as well. Any info you can provide on how to help would be appreciated. 

10

Thank you for replying Joanne... At present I have found no relief for the nerve pain. I've tried Lyrica but makes me groggy and not functioning. My Doctor thinks it Post Traumatic Stress after my hysterectomy..!! Nothing else... Can you believe it...? I'd love for them to swap places with me... H

11

I hope you have found some relief for yourself by now... I think this should be done keyhole rather than abdominal incision. I never knew it could be done alternative ways as the person I attended knew I had lower back pain and really keyhole would have been best option for me but was never mentioned... I would love to be in proper contact with you but am not sure how to go about setting this up or if you would want that... 

12

Hi Alison... I'm only getting back to you now.. I've tried Neurontin but doesn't work for me. Lyrica at 150mg at night had me vomiting so I csn doff that. Nothing else tried since. I too have the severe pain into right side and groin and both legs and into lower back and left hamstring. It also spreads to the rest of my body. I'm on sleeping tablets to help sleep - few hours a night. I just don't know what can help to be honest. It's horrific that we can suffer so much after this operation. I didn't have any of this before this op. Driving causes severe problems for me also. Even basic housework. What used to be ok to do is now not. I've been told it's Post Traumatic Stress I'm suffering from...!!! I think I'd know if I was - severe nerve pain is not Post Traumatic Stress in my eyes...!! PTS can be helped with meds and CBT and you'd be able to walk and not be in pain. Someone else said it's my body reacting to the surgery... This is not normal after 2 years. Everything should heal within 8 weeks or there abouts... Have you found anything that works yourself yet...? I've also been told to try Meditation and handle my stress...!!! Very hard to meditate when in excruciating pain...!! I'd like to be in proper contact with you but I'm not sure how to go about this or if you'd like to do this... I do hope you get some relief from this... Family don't seem to understand at all. Until you go through it and suffer it, you won't comprehend it at all.... 

13

I've also tried nerve blocks but didn't work. They have suggested a laparoscopy to see what's going on inside - ie scar tissue, adhesions etc.... I'm reluctant to go this route as it's more surgery and risks more scar tissue... Plus if adhesions, they've no guarantee they can fix them. It could render things worse - although how much worse I just can't imagine... It may well come to me going down that route in the future but I hope not as I had 3 abdominal surgeries within 6 months - 2 being open surgeries 8 weeks apart (looking back they were too close together)... 

14

And I also think enough emphasis on after care and family / friends support and what the surgical menopause is going to be like should be thoroughly discussed beforehand. I couldn't get HRT due to cancer - I'm not sure if it helps or not but the months that followed surgery with the surgical induced menopause was a nightmare - brutal sweats, sleepless nights, tears, mood changes etc. Even herbal tablets from Health Shop might work if you were told about it... 

15

Hi,

I just read your posts and recoginze myself in you. I had hysterectomy 4,5 months ago for endometriosis. I've started to have worse and worse pains after the surgery and thought I was going crazy. It started as burning pain in the pelvic area which started to shoot down my legs. Sometimes it goes all the way down the left leg in the back down to the calf. If I try to do some excersise it gets worse and I have stabbing pain in the pelvis. Maybe this is the endo, difficult to know. It's hard to sit, I work in an office and have now burning pain almost all day. It's horrible. I take Cymbalta (it's the Swedish name for it), the active substance is Duloxetin. I tried Lyrica for some time but had bad side effects so quit. On top of that I take Paracetamol, Naproxen and Palexia for the pains. Also have Tramadol for very bad days which is now almost every day as I'm becoming progressively worse. I'm starting to regret ever having this surgery. I had chronic pains before and also the endo pains and getting worse is not something I'm feeling happy about. I try to stay positive, I have great friends and family and a good boss but feeling scared of where this is going to end. Sorry for being so pessimistic, I'm not always like this but having a bad day today. Take care, I hope you're having a good day!

16

No need to apologise... I fully understand your situation... And you're not pessimistic... You're just being honest in how you feel and what your life is like now after your hysterectomy... It's a nightmare as far as I'm concerned. Life has changed so much - it's such invasive surgery and sometimes the full extent of it is not fully explained beforehand...  Lyrica nearly drove me insane - like a personality transplant.  Cymbalta affected me too... The more the pain is masked the more you think you can do and the more you try to be "normal" but relying on pain killers becomes necessary to function better. Having good family and friends is a must during this time and that they understand how you are feeling and that there are times you are not yourself due to the nerve pain... I always say to anyone - swap places with me for just a day and you'll understand.... People sometimes don't think you're in pain as they see you out and about and you may look good as you try to put on a face when out - but only you know how you feel .... The only thing I can say is try take each day as it comes as best as you can - I've a very good friend who advises me this all the time. She knows what it's like herself and has been a rock for me... Good friends are hard to come by but it's at times like this that you know who you're true friends are... Stay strong as best you can and try do one nice thing for yourself each day to brighten up your day... Not easy but even if it's just watching a comedy or a coffee with a friend or family member... 

17

Hi Gail, 

Thanks for your response, it feels good to talk with people in the same situation. 

I also felt like my personality changed completely when I took Lyrica. It was terrible and lots of nightmares. Cymbalta does not affect me as much but suffer from sweats :-( Not nice to sit in the office and feel sweaty most of the time. Also the menopause gives more sweats so not an ideal combination. 

I try to practice mindfullness, it helps somewhat, I do try not to worry too much and just live in the moment and be happy about the good days I have sometimes. I also love being out in the country house and just sit in the garden reading a book. This gives me some calmness. I am quite a positive person normally and try to hold on to that but then somedays it just feels hopeless. But trying to find health even though I'm ill. I know I can. Today I'm meeting friends at a b-day party, looking forward to that :-) 

Take care 

18

Hi Sharon.... Just checking in to see if you had found anything to help the burning nerve pain to be better...? I'm still not sleeping with it and when I move or walk it's worse...

19

If anything, things are worse.  I now have constant constipation, terrible dryness and it is a constant daily battle with urinary infections.  I was told none of this before the surgery.  The trouble with nerve pain is that there is not much that can be done.  If I could just turn the clock back, I would have done much more research on what a hysterectomy truly means for a woman.  I know there are cases where it must be done.  But the medical profession seems to think it is perfectly OK to take out all a woman's female organs yet if it were a man with a similar condition they do not remove all his male parts.

Some have found relief from nerve pain with having a spinal cord stimulator implanted.  As for me, I don't feel comfortable having anything like that placed near my spinal cord.  It is the only other option besides medications that I know of.  Oh yes,  there is also an outpatient procedure (done by very few doctors) called a ketamine drip which has provided some measure of relief on an individual basis. However, my insurance won't pay for it for me so it is not an option.  One must go, I think, 3 times a week for a certain amount of time.  They will usually know right away at start of treatment if it is going to work, but cannot predict how long the relief will last.

These are the only options I know.  Living with this has made me absolutely miserable, since before the surgery my RSD was mainly confined to my upper body.  Now I must deal with all sorts of new pains and terrible constipation on top of it all.  It is no wonder that there is a huge percentage of women who develop depression in the years following this procedure.

Sometimes I feel that as woman our concerns are brushed aside or not taken that seriously.  

20

Thank you for your reply. So sorry to hear you're having those daily problems on top of nerve pain. Hindsight is a great thing... I would have opted for laparoscopic surgery if I could have rather than open incision. I have difficulties walking after op also now with my back which is a daily battle. How does one keep sane in all of this...?? Friends don't really understand as you're not out & about the way you used to be & can't go places like they do so it limits your life & what you do. How do you pass your day if you don't mind me asking...?