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Persistent pain almost 4 years out Persistent pain almost 4 years out

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Unread 01-30-2004, 09:18 PM
Persistent pain almost 4 years out

I am so worn down by the peristent pain that has dragged along with me, like a ball and chain for these almost 4 years since my initial debulking and surgical menapause!
I feel as though there is a 10 pound weight tied to the spot where my cervix used to be, by a cord that leaves it to dangle between my knees.
It is a constant, steady, persistent, assertive type of pain.
I makes me break down and cry when drving, sitting, anything!
I endure and endure, then, I reach my limit and have to sob outloud or "burst".
It doesn't really help to aleviate anything other than the load from carrying this pain all the time.
I had several sessions with the BCGO team that did me to chemically burn a _______ ( estrogen deprivation memory loss - I __KNOW__ the word - just can't think of it - MADDENING!)
( it was to burn the area where my cervix once was )
They never were able to fix that and I wonder if it could have to do with this pain...
I wonder if they touched the bladder related nerve noted in the surgical notes...
I wonder if a part of my intestines, or ? is trying to settle down at the scar area where my cervix once was and the weight/pressure is causing this -
It makes me not want to eat.
It wears me down.
Nothing will make it stop.
Sitting VERY upright, then, "scouching" my bottom forward/down and very consciously pressing in that direction - ( try accomplishing ANYTHING in THAT position! ) DOES make it LESSEN, but not enough for more than a brief break.
I know some people end up beingbeaten by the pain and kill themselves, and I understand why now.
It truly DOES wear a person down!
Almost 4 years.... no end in sight....
I hope to hear back from any folks who have a similar pain, or a SOLUTION!
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Unread 01-31-2004, 11:51 AM
Persistent pain almost 4 years out

I am sorry you are suffering so much

I don't have that kind of pain... but I have been dealing with constant pelvic pain for most of the last 13+years.

You don't mention what the doctor's diagnosis of your continuing pain is... That might be helpful in trying to find people with a similiar issue... perhaps... Do they think you have nerve damage?

I am sorry I am not much help. One doctor did mention he thought I had several neuromas (abscess on the nerve ending) in my vaginal cuff but another doctor thought the pain might be from endometriosis or something adhered to it internally.

Many hugs!!

Unread 01-31-2004, 12:45 PM
so glad you have posted

it can't be easy having to cope with all this and so many people seem to expect once you have had surgery that the magic wand has been waved, you're in perfect health and people's measure of compassion and care seems to fade away to nothing.

Your mentioning about positioning yourself to seek relief has made me wonder if you have been checked for prolapse of either the bladder or bowel? 'Dragging' is a common description of prolapse of many organs.

Another possibility is adhesions to your bladder or the tubes up to your kidneys. I thought I was having repeated uti infections but it was adhesions on the tube to the kidney that runs close to where my ovary had been left ( removed now, plus adhesions and a cyst)

What sort of pain medication have you tried, otc or presciption? There are several things going on here, one is to treat your pain effectively, then sort out the disorder that is causing it and also then deal with the fallout this condition has had on your emotional well-being.

Do you have someone who can support you with this? This site is fantastic for information, research and sharing and venting but I think you need to see a specialist and it would be wonderful if someone special can help you and support you.

Wishing you solutions and freedom from pain soon, hugs, Linda
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Unread 01-31-2004, 01:10 PM
Persistent pain almost 4 years out

Hi ((((Sweetie)))) I am so sorry you've been living with all this pain for the past 4 years

Considering the motions you have to go through to relieve your pain, I was also thinking that you might be dealing with some type of prolapse. I know that when I was dealing with the Rectocele, before my hyst, I also found that sitting or even changing position in bed would require some very creative motions

Personally, I've been dealing with increasing hip pains lately and it's also a matter of having to go through several motions in order to sit down comfortably and... sometimes... I can't seem to achieve that comfortable position. Fortunately, in my case, the pain is not constant and doesn't always occur when I sit down. My pain is either caused by bursitis or by arthritis (I've been diagnosed with both).

It's really important to continue seeking an answer when we're dealing with this type of pain. My experience has been that, for some doctors, it's easier to discount the pain, especially if it's not easily diagnosed, than to continue looking for an answer. And it's soooo easy, or so it seems, for pain to disguise itself as something else... no wonder it can take years for a doctor to, finally, find out the cause to a problem!!!

One option that has worked for some of our members has been to seek the help of a pelvic pain specialist. The specialist do not only treat the pain, but they will also actively try to identify the source of the pain, often through the help of a multi-disciplinary team of professionals.

Here's a link to several resources to web-sites dealing with Pelvic Pain:

And these resources for those of us who have long-term complications following our hysterectomy, include links to pain management and diagnosis websites.

Sending lots and lots of s your way and ing that you will find relief real soon.
Unread 02-01-2004, 10:12 AM
Thank you 3 for replying!

I keep thinking "prolapse", too.
As for adhesions: I have no doubt!
If I have a BM, right afterward there is the most deep, profound, dull but INTENSE pain on what I am certain are my ureters ( those tubes that take the urine down fromthe kidneys to the bladder )! Sometimes it actually, physically ROCKS ME -I SWAY from it! It PULSATES! KILLER PAIN! Just part of the post-op me.
This other demon pain is relentless.
Pre-op, as the undiagnosed cancer grew, I would have "my attacks". Over the YEARS that I sought Dr.s' help for the diarreah and "attacks" without EVER getting help, I would do natural childbiorth to breathe my way through them. My point being that I can take pain. But this, while not acute, like dropping a can of soup on my toe, is DEPLETING ME DAY BY DAY! That can of soup DOES work "like backwards asprin" though; I forget EVERYTHING but it when that happens! '-)
I don't drop cans of soup on my toes on purpose though! '-)
Another thing, without being too icky:
Post-op, I don't ever feel the need to have a BM. It's as though I lost that nerve or something. I just go sit and wait at set times, as I am able. Soemtimes it works, sometimes it doesn't. This morning, the toilet was full of blood. No pain associated though. None. Not a monster BM either. I DO have maybe monthly "monster BMs", we call them "my coconuts" around here.
It's like giving birth to a turd. Usually it is physically impossible for something that huge to get out, so, they take me outback and use the garden hose on very slow trickle on me. That always works after a few tries. A traditional enema is pointless against the thing. It's a wretched way to go about life and something I never would of imagined as becoming a part of my life, but we've grown used o it post-op.
Another note is that the stool after the smaller coconut always is pure liquid stool, and it is always present after the smaller coconut passes. If I CAN complete "my business" in the toilet ( no going out back and getting the hose ), there WILL FOR SURE be an immediate expulsion of a moderately large amount of liquid stool. Always this pattern. Sometimes, it is bright green, almost neon green - sort of lime jello, but that's not it - a unique color.
I have yet to regain "normal stool", as so many tout as one of the benefits of the cancer surgery, though I DID have a few "normal" stools in the months immediately post-op and recall them and the excitment they induced. The false thoughts that "all was going to be A-OK"...
Usually, I have a very loose stool. If I don't I have the small ( toilet possible ) coconuts, or , the rarer monster coconut stools followed by the liquid.
No matter what though, I don't have the abilty to "move things along" post-op. I can't "push", if you know what I mean. I use mental imagery, and try to envision the tract, and move-move-move things along through the power of thought, for what that's worth - It DID help me pre-op, during my pre-Ovarian Cancer DX bowel crazinesses.
As for the Dr., this is VERY LOW on their list of interests, if it is even on the list at all.
I go, I complain of the pain, they chemically burn the area where my cervix was, repeat, repeat, repeat, repeat, repeat....
No relief.
As for medications. I am _SO_ over that! I've tried Vicodin, something else given at discharge, Ibuphrofen - up to 800mg every couple of hours - enough to make my arms and legs go numb, but the pain was as "awake" as ever - I give up on meds!
It's OK. I was hoping to find a solution to this, or someone else going through the same mess. maybe, one day, someone will read it, recognize the problems and e-mail me about it.
Until then, I go on - and so does the pain.
Unread 02-01-2004, 11:27 AM
Persistent pain almost 4 years out

(((Susana)))) please go to the ER immediately. A toilet full of blood is simply not normal!!!!

You need to have these issues addressed!!!! Please, bring a print-out of your two posts on this thread, just to let them know how bad the pain is, how it's been going on and just how much it's affecting your quality of life.

Please, listen to your body: it's telling you that it needs medical attention... Please keep us posted on how you're doing
Unread 02-01-2004, 11:59 AM
Persistent pain almost 4 years out

(((Susana))), I agree with (((Dany))) that a toilet full of blood is not OK or normal. Neither is green stool on a regular basis; neither is having to use a garden hose to have a bowel movement.

It sounds to me like you have some serious GI issues that need addressing right away, and I mean like today, for starters. I would get to the ER and show them what you've told us.

Also, have you seen a gastroenterologist recently? It sounds to me like a colonoscopy (at a minimum) is in order. That much blood in your stool is something that MUST be checked out. I know all the tests are not fun (I have had them too) but they can potentially save your life. Maybe that doesn't sound like such a big deal right now, when you are in such pain, but it is to those around you who love you and want you to feel better.

Please take that first step today, OK?
Unread 02-01-2004, 11:06 PM
Both replies read

I'm backing out of here now.
Thank you for everything.
Unread 02-02-2004, 05:29 AM
Persistent pain almost 4 years out

Thanks for posting, Susanna, and be assured that the Pre-Op and Post-Op members are being helped

I'm relieved that there isn't blood everytime you have a BM. Still, blood showing in your stools is not normal and should be attended to. Furthermore, pain is only one way for your body to tell you that there is something wrong: other signs are blood (which you've had), fatigue, bloating and a general malaise.

You've been through a lot and seems to have developped a tolerance to pain and suffering. However, in the long wrong, being in constant pain takes it's toll and that's why specialists are now turning to the value of managing the pain while, always, trying to identify the cause.

Sending lots of s your way and wishing you the best of luck.
Unread 02-02-2004, 09:21 AM
Persistent pain almost 4 years out

Your description of the "weight" from your cervical area makes me wonder if you've not developed some vaginal vault prolapse, which could obstruct things when in an upright position, but not necessarily be discoverable when lying down in stirrups (which tends to push things back into some sort of "normal" position). It does sound like they had to do silver nitrate treatments of the vaginal cuff (that would be the "burning" that you report); there may have been granulomas in that area; however, you could have developed scar tissue there as well.

That, perhaps combined with a rectocele, may be contributing to your mechanical problems. It wouldn't be a surprise that the blood could potentially come from a ruptured hemorrhoid; if you're straining and having to go to the degree of the garden hose , that's prime hemorrhoid conditions.

As far as "making a fuss" while on Medicare: you've paid into it and have the right for humane, appropriate treatment. I'm assuming you continue to have followups with an oncologist for your ovarian CA, right? It's wonderful news that you've been "dancing with NED" (No Evident Disease) as -- visit our friends say over in Cancerr Concerns. There's a whole community of ovarian cancer survivors over there who are not just surviving but thriving.

To have given up sex for seven years, even though it may be "small price to pay" seems a high price to pay for day to day living. If you can't find your current doctor able to answer some questions and come up with a plan to improve the quality of your life, it's time to find another. The quality of your life is just as important to overall survival as is good surgery in the first place.

I sure hope you get some answers when you go in for this latest labwork -- no matter how accustomed to pain you may be, the quality of life is worth fighting for!


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