Returning Chronic Pain AFTER Hysterectomy?

I have been afraid to call my doctor or tell my family that my pain is slowly returning. My pain was gynecological in nature - I experienced severe lower left quadrant abdominal pain since the birth of my son two years ago now. I had multiple laparoscopies, a gastroscopy and colonoscopy, bloodwork, CT and MRI, ultrasounds and finally a hysterectomy.

I have bounced back - it's 10 weeks post op, and last week it started - a twinge, and it got worse and last night it woke me up. I have worked HARD to get off of all of my pain meds that I've been on, and I had a subtotal hysterectomy and my right ovary and cervix is still intact. The gynecologist was very happy with my right ovary and the outcome of the surgery. Part of my pain was related to adhesions from the C-Section and part of the pain was related to the cysts that had been occuring on my left side. My doctor said to leave the right ovary - that if something happened in the future I could have it removed. But low and all across the bottom and now the right side is sore again. It feels almost like menstruation cramps, even though I have no uterus anymore! It's sharp at times and it's hard to ignore.

I'm afraid to tell everyone - my life has made a huge turn for the better - I've gotten myself out of a bad situation and I feel good for the first time in a long time. I know being emotional never helped things either. But I exercise, eat well, don't drink or do any recreational drugs, and I'm not taking anything. I just finished 3mg once daily of hydromorph contin last week, with no adverse effects, save a little nausea (the dosage and meds I was on before was just sickening) and some night sweats. Nothing gravol and a shower couldn't fix!

But I can't shake this. Tylenol isn't cutting it - I suddenly can't lift my two year old again, and climbing stairs hurts. My doctor had me on an elliptical for three weeks, with very short workouts (the lowest impact for 5-7 minutes) and walking. None of it hurt and I have been waiting to return to horseback riding, and bike riding.

Is there pain after this surgery? Can my chronic pelvic pain return after all of this? Did I ruin my chances for another child for nothing?

[Sarajmt]

Hi Gracie:  I am so sorry that you're still having pain.  But you've found a good place to come.

I'm not a doctor but my guess is your adhesions are back with a vengeance.  I've battled these little monsters since my hysterectomy in 1995.  

My suggestion to you is get a referral to Pain Management Physician.  Your Primary Care or OB can do this.  A pain doc can do procedures such as injections, block, Radio Frequency Ablation etc.  She can also prescribe pain medications.

There is a whole list of do's and don'ts with adhesions.  If you'd like me to tell you what I know about staying fairly comfortable (which is impossible sometimes!) please send me a private message.  I'll be glad to let you know what I know.  Also there is another member Jaybay who has these monsters.  I know she will be glad to share her extensive knowledge on this subject with you.

Do check back later.  I'm sure more people will be around later who will be glad to help.  And welcome to our group.

Sara

[graciespook]

Thanks Sara,

The funny thing was, the gyno (he was the second one I'd had - I've had horrible doctor problems, long story, but along the lines of me "making it up"), said they didn't look that bad. But it was so bad, I couldn't walk properly - it looked like I was limping, and bent over.

Living through the past two years has been hell - the only relief was from medication. But I'm not myself on these meds, and it's a last resort for me. Ugh. Adhesions. I hate the word, and what they mean. And I know how they came back - I had no help with my son even though I live with two other adults (I'm moving out in the fall, I am finalizing my divorce, so back with my mother, and it's actually been a good move for the most part) and my teenage sister. I had to lift and care for him 3 days post-op. Not fun at all. So I know I did too much. You walk a fine line between exercise and doing damage!

I do need some help and I need some others who have been accused of faking their pain for medication, attention or for god-knows-what-else. I want to get back on my horses, and get on with my life - not deal with this. I've tried every medication and treatment and the surgeries and really intensive pain meds were the only relief. I've even tried Lyrica, that when coupled with an opiod/narcotic, seems to work quite well.

But things are bad here, as I imagine they are all over North America - pharmacies getting robbed, doctors getting slapped on the wrist - I have a hard time getting any sort of medication from any doctor! And I just want this to END. I feel like I compromised being pregnant EVER again just to get relief and it didn't work. And the morning after the surgery, waking up and knowing it was done and I couldn't feel that feeling again of having a baby inside me - TORTURE. And my gynecologist works at the hospital across the road, and is mainly involved in obstetrics - so because I'm in Canada and I'm put where I'm told because it's free and I'll like it (actually, I thank my stars everyday that I live in Canada, because if I didn't, I'd be in torturous pain not being able to afford surgery, tests, doctors etc. The only thing I've paid for is parking to my gynecologists - and the pharmacy validates it! Even my family doctor is free), I ended up in the outskirts of the maternity ward. How do you think it was to watch babies being walked around by proud fathers or nestled in mom's arms while dad pushed their wheelchairs?
The kicker was when one mom asked me where mine was and I teared up and she thought I LOST a baby - I told her my story and completed it with a tear filled smile, telling her my baby was at home, and approaching toddlerhood!

Anyway, any support, suggestions, empathy, is appreciated!

[Sarajmt]

Hi again!  First let me tell you that my cat knows more about adhesions than some doctors!  I cannot tell you how many times I've heard "It's all in your head" or "Adhesions don't cause pain".  And there is my all time favorite " You have irritable bowel syndrome".

A.  It's not in head.  It's in my abdomen.
B,  Anyone who knows anything about adhesions knows they can cause intense unrelenting pain.  I wonder how those doctors would like their intestines wrapped up, squeezed and plastered in all sorts of weird places.  That's why you can't stand up.
C.  I have a colonoscopy every 3 years.  The GI sees adhesions.  Not IBS,

In addition to a pain doc, you should try a pain therapist.  They help you cope with the pain, the depression and all the other things that combine to make us miserable.  You probably could use some anti depressants.  Most of us Chronic pain patients use them.

Would you like me to private message you with my adhesion survival guide?  Just let me know.  I don't want to force unwanted advice on you.

And keep checking back in.  More people will be around later.  It's Memorial Day holiday this weekend.  Many people may be out of town.  Just have to wait and see,

Sara

[designgyrl]

I also want you to know I TOTALLY understand what you are going through. Years ago I had my left ovary removed due to endometriosis, adhesions wrapped to my colon.  I then had a few more surgeries and had to have an open hysterectomy where they took my right ovary and uterus due to a hemmorage.  Unfortunately, I woke up feeling devastated because I have no children and am 38 years old.  My chance at having children was taken away by endometriosis, adhesions, and cysts that caused my ovary to hemmorage.   I understand about the doctor telling you about adhesions not hurting, I just last week had a general surgeon who stated adhesions are not painful.  I wanted to slap her, or at least ask her if she had personally ever had them.  I'm positive she didn't.  It took me four weeks to get off pain medications for my hysterectomy and I was still in pain at the time I went back to my appointment but the obgyn stated that she wanted me to take ibuprofen, so I had to deal with the rest of the pain with just plain aspirin, so I know what you are saying.  

I do think you should call your obgyn because it does sound as though something else may be going on, or that you may need to have that right ovary taken out eventually too.  But please know there are a lot of people here on this board that do understand adhesions, and how bad they make you feel.  Please let us know how you feel and hope you will keep posting.

Sunshine

Sara,
I'd like the adhesion information sent if you wouldn't mind....

[Sarajmt]

Hi Sunshine:  I'll get that right to you.
Sara

[jamlws]

I am so sorry you are going thru this. But I agree you need to find a good pain dr to treat your pain. Most of us hate to be on pain meds but that is the only way we can make it thru the day.
One time I was in the ER crying in so much pain and the dr which was a girl ran some tests and then came in my room and said you only have a cyst on your ovary and you can't be in that much pain and sent me home, she treated me like a total druggy and I HATED her for that and if I ever have to go back to that hosptail I will walk out if she is working no way she will treat me like that again.
I had my tubes tied due to some female issues, I know I didn't have a hysterectomy like you did but I also went thru the "what did I do" It hit me after that I will never be pregnant again and feel another baby in side me. That was so hard getting over. But the way I got thru it was I kept telling myself it was for the best cause of my health there was no way I can have another baby;. I had pre cancer cells on my cervix and had to have most of it cut off and if I was to get pregnant again I wouldn't be able to carry the baby passed 20 weeks so it was either don't get my tubes tied or lose a baby so I made the right choice even tho it was so hard. I still have alot of female problems and I really need to get a hysterectomy but with my current health problems I have put that to the side.
I wish you the best of luck and keep in touch to let us know how your doing.
Jamie

[graciespook]

I appreciate the answers postedhere. And the fact that you feel the same.

The last four days have been bad. I couldn'tsleep the other night because there was shooting pain down my legs, I get very tired easily, and even my deep breathing when I'm pushing it while walking/etc, seems to hurt. I hate going back.

My family physician thinks it's in my head and the local hospital has seen me SO many times, THEY think I'm wacked out, or onto drugs. This is NOT about drugs, this is about PAIN. I forgot how it crept up on you, until your shoulders ache, you're exhaustedand doing simple exercises seem futile.

I may call my gyno again and tell him whats been happening. But unfortunately,  I think he'll just brush me off. I may ask him in that case to refer me directly to a pain specialist. I'm almost afraid to call!

Thanks again, and it's good to know I'm not alone!

[Sarajmt]

I am so sorry that you're having such a hard time.  I know that my pain goes down the inside of my legs when it's really getting bad.  Your instinct to just ask for a referral to a pain management physician instead of going in is dead on in my opinion.  As I stated before, doctors either don't know very much about adhesions or don't want to admit the surgery they performed caused it.  Your doctor will give you the referral if for no other reason, to get you out of his hair.

Make very certain that the pain doctor you choose treats abdominal pain.  Some do not.  So check on that.  Good luck to you.  Let me know if I can do anything for you or give you more information.

Let us know what your doctor says.  And come to stay.  We all have chronic pain here.  Different causes but we all hurt.  There are many knowledgeable and  sympathetic people here.  We'd love to have you in our group.

Take care
Sara

[designgyrl]

So, did you call the gyn today?  I was wondering what has happened since your last post?  Are you feeling any better.  I'm sorry about the situation in the ER but I know they do tend to label a lot of people as drug seekers.  I was in the ER one time for kidney stones, and there was a person next to me screaming and saying my back, my back, it hurts so bad, I need more demerol.  This guy was screaming at the top of his lungs.  My nurse came in and I told her I was sorry for complaining about the kidney stone and I said can't something be done for that gentleman.  The nurse made the comment that they had ran every test on this person and they did not find anything wrong with him and that they thought he was seeking medications.  I just wanted to get the heck out of there because I didn't want the ER to think I was like that too.  Unfortunately I know that most nurses feel that everyone who needs a shot of morphine or demerol is doing it out of drug seeking.  It's so sad.  

Anyway, I hope you called a doctor to try to get a pain specialist.  It isn't right that you have pain down your leg.  I've had some adhesion pain since my hysterectomy and the obgyn told me that adhesions are painful.  It makes me upset when I hear doctors trying to tell people that they don't hurt.  I'd like to give those doctors some adhesions and see how they feel after that.

Welcome to the board, keep posting because we do care what happens to you!!

Karen

[graciespook]

Hi Karen,

I go in next week to see my obgyn and his nurse was sympathetic.

the point is, it is what it is - I shouldn't be afraid, I'm in pain and that's the end of it.

I'm gonig through a divorce, and I haev a two year old. This winter I go back to finish my Bio/Chem degree, years after I started it, and hopefully on to medical school. I want to work in family practice and also want to specialize in pain. We're way understaffed here in Canadafor pain specialists and all kinds of doctors.

I will keep in touch over the next few days ,but maybe I went through this to wake me up to the problems many haev and to specialize in pain management.

Trying to keep my chin up!