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how many of us have or have had chronic pelvic pain post hysterectomy how many of us have or have had chronic pelvic pain post hysterectomy

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Unread 03-09-2004, 04:30 PM
how many of us have or have had chronic pelvic pain post hysterectomy

Big (((hugs))) to each of you I figured the clips were in pace for a reason but it would seem they would be made of something similar to dissolving stitches Time to seal & heal then away they go Thanks for sharing the info concerning them ((Audrey & Linda)) does seem someone along the way would've mentioned them but then again they probably assumed that I *knew* they were in there <sigh> I also have a great deal more right-sided pain...very intense, sharp or throbbing. I feel it is Adhesions or some of it does make sense that these clips would cause a larger amount of Adhesions to form I am glad they are not using them as much tho....possibly save some others undergoing these type surgeries a great deal of pain!

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Unread 03-09-2004, 10:00 PM
how many of us have or have had chronic pelvic pain post hysterectomy

Hi everyone,

Thanks for all the info on the clips... Live and learn!

I talked to an old boyfriend about my case (he's doctor) and he speculates that the clips have been my problem all along!

My long past history, included many miscarriages and ovarian cyst but believe it or not, I didn't suffer or have anypaon in between incidences. No endo, adhesions, irregular bleeding or anything. (As it turns out, I have antiphospholipid syndrome which explains the miscarriages.) Then, 9 years ago I was misdiagnosed with an "etopic" pregnancy. The doctor "saved" me and sent me on my way. Ever since then, I have had this pain. Since I didn't like the doctor who "saved" me from the ectopic, I never went back. So for the next 7 years I saw three different gyns who couldn't find anything wrong. (No one mentioned clips.) Finally I went back to the origional doc who told me I had pain because I had a "mass". Hence the TAH/BSO.

Now, in reviewing records, there was no "mass" were I had the pain. However, path shows one surgical clip removed that was embedded in my left fallopian tube and the X-rays show three remaining clips. One on my left, the other two on the right. Right were I have the pain. I am not a big woman and there is not much room down there were the clips are. They take up a great deal of my abdomen. My friend's theory is that my pain has been, all along, from the first clip that was left in on my right side. He sees no reason for the TAH/BSO when he reads my path.

I'm devasted. My sex life is gone and I'm left with all these problems. For what???

Has anyone else had anything like this happen? What did you do? How did you cope?
Unread 03-09-2004, 10:47 PM
Pelvic Pain/numbness

Add me to the list. I have been working so hard to get those muscles which were cut during the SAH to go back into shape to hold my GUT in. My surgery was 7/22/03 and I have not missed a day of exercising to try and be "normal" again. If I had a 18-20 week size uterus before surgery, why can't I have a flat stomach now? I have been seeing a chiropractor and we are aggressively working on my situation but it is so frustrating to still have pain/numbness in the area of my incision and not be able to consciously hold my stomach in. It doesn't seem to make any difference that the 700 gram uterus with fibroids was removed. I still can't make my stomach pull in when I want it to.
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Unread 03-10-2004, 07:17 AM
how many of us have or have had chronic pelvic pain post hysterectomy

I have antiphospholipid syndrome
I have this as well... When I was dx'd with it a few months after my TAH, it occurred to me just how lucky I'd been by not having multiple miscarriages. Each article/resource I read on it, mentioned the # of miscarriages in patients with this, I only had one...I'm sorry you had to suffer thru all those
I shared most of my journey earlier on in this thread. One of the things that has really helped me, physically, is Pain Mgmt. I still have pain but it is for the most part well-controlled. For which I also feel fortunate. I try to remind myself that things could be much, much worse so I think by focusing more on the positives in my life will help to not center my thots on the pain. I know that is hard to do at times, exp. when your experiencing pain so bad your doubled over & can think of nothing else <sigh>! That is where Pain Mgmt made such a difference. I was in the same scenario I described above about 80% of the time before P.M.
I've underwent numerous procedures in attempts at some relief; Trigger Point Injections, Nerve Blocks, Epidural injections, a Discography <to see if my back was adding to my pelvic pain, also to dx some of my back problems. Those also began after my Hyst>,Physical Therapy, the use of a TENS unit <which I would suggest for anyone to at least try> Deep massage therapy, Pelvic massage <ack...never again> Ultrasound treatments, HyperGastric plexus block, a back brace, Lidocaine patches on my back & pelvic area, some stretching device that I cant recall the name of , every family of meds ever produced..not really but it sure seems like it! The long-term use of Pain medication has been the only thing that has given me real relief for an extended period of time.

Have you ever considered or tried P. Management ((Lucille))? If not, it may be worth a try ?!? There are several ((Sisters)) here who use this to help with their Chronic Pelvic Pain.
There are also procedures that are used to pinpoint the exact location of the pain. It can then be treated appropriately.
A Dr in my city has had great success with it...I've read several
articles & studies pertaining to him and other Drs performing this for CPP.
Here are a few links with some info in case your interested:

Patient Info:Pain Mapping

Pain Mapping, awake laparoscopy and Chronic Pelvic Pain

This is an excellent article I had stumbled upon the other day. It details info & stats on Chronic Pelvic Pain (CPP), possible sources & treatment:
Chronic Pelvic Pain

Good Luck...pls know your fellow *Road Travelers* really do understand...having someone to share with/vent to that has an idea of what your suffering yourself has helped me considerably in acceptance, my continuing battle for relief & more support than words can relay
Unread 03-10-2004, 10:29 AM
how many of us have or have had chronic pelvic pain post hysterectomy

Dear Sheri,

Thank you for the nice reply and sympathy. However, I must have given the wrong impression about my pain. The pain does not really interfere with my life nearly as much as the other problems. When I have an "episode" in my back it is usually temporary now as I have learned how to alleviate the severe pain.

I always have a little pain in my leg but it is managed well with Neurontin. The pain in my side, where the clip is, is a constant, minor pinching most of the time. Occasionally it can become severe if I am lifting or working hard. I have worked out a way of stretching just "so" which seems to move it back in place. Sometimes it hurts when a BM passes by it. The thing that upsets me the MOST is that I would have lived with this side pain IF I had only known what it was! He scared me with the word "mass" and I naturally thought it might be cancer.

My frustration comes from all the nerve damage and other problems caused by the surgery and knowing I should have never had it in the first place. The emotional pain, (especially whenever I remember how great sex was before surgery) is worse than the physical pain for me.

In that respect, your kind thoughts and all the other sisters on here help more than anything.
Unread 03-24-2004, 07:31 AM
how many of us have or have had chronic pelvic pain post hysterectomy

I still have some problems on and off as well. I was diagnosed with Interstitial Cystitis last July and was on Elmiron for that. That didn't help very much, and I ended up with two dilations for urethral stricture - the last one didn't do anything. I then went to a nurse at the Urology specialist who specializes in pelvic floor exercises. I have been doing alot better up until a few days ago.
I left one ovary in and I would say about every two to three weeks I get a twinge in that area. It maybe lasts a few days and then its gone. I've gotten used to it for the most part.
Going back - right after my surgery - about three months after, I was having some pain in my pelvic area again and was having some hot flashes, etc...they did an ultrasound and found a cyst on my remaining ovary. They put me back on constant BCPs and the cyst went away.
So, I do have a twinge even on the BCPs.
Starting on last Thurs., I got the twinge as usual and didn't think much about it. With the IC, I've slowly started eating and drinking pretty much whatever I want now since starting the Kegels and was doing fine. Well, I got thirsty on Friday night and drank (okay - stupid me) a little cranberry mix koolaid. Dumb dumb dumb. So, there went my bladder - at least pain with urination - the whole IC thing. Well, that finally cleared up on Monday. But I guess I exacerbated the whole ovary twinge thing and I had some sharp shooting pain on Sunday night. I've tried a heating pad which seems to work some and taking Tylenol at night so that I can go to sleep.
I'm also now experiencing hot flashes again and still the pain persists around my ovary. I went to feel for the pain by pressing down in that area and found exactly where it hurts. Thinking either my hormones are screwed up again and causing pain or maybe another cyst. Going to call the gyno this morning to see what's up.

Oh, also diganosed with IBS, but the pain this time is definitely not the IBS - after awhile you can get to tell the difference.

Unread 03-24-2004, 08:29 AM
how many of us have or have had chronic pelvic pain post hysterectomy

Let me add my story here.. I had my TAH keeping ovaries 3 yrs ago, had no troubles at all till last August when I went to the ER for SEVERE cramping, and doubled over pain. They took CT scan and tried a vaginal U/S that was nixed in the process as I was in too much pain to go on.. Had another regular U/S in December to see if I had a cyst that popped or had a cyst that was there. The report came back as nothing there, but I have small ovaries.. Ok fine, Let's roll on to the 8th of this month, back in pain, back to doc, this time thinking I have something falling out, the pain is as bad as it was last Aug.. Nothing wrong, it may be a cyclical thing, I had another U/S yesterday and I am not going to be surprised when they tell me they found nothing.... I find that I can't lift anything heavy now with out getting crampy (like period crampy) and I can't walk at the clip I used to either.

I had my TAH due to fibroids and there was so much relief when it was done and yet this pain is not the same kind as the fibroids gave, either. Its crampy and burning and mostly in the middle, under the belly button and my back hurts all the time too.

Unread 03-24-2004, 11:54 AM
Count me in to...

I had my TAH on 2/19/03 I was hoping to be pain free after boy was I wrong. My request was to have everything taken. My dr and DH decided while I was under to leave ovaries because of age and hrt. They felt comfortable that she could remove the endo, adn that removing the uterus would take care of the ando, fibroids, and it wasn't until after that they discovered the cervical cancer cells. Well, On Dec. 17 I had an mri done for my back and low and behold they found a 6x10 mass on my left ovary. Not knowing for sure what it was I opted to have a BSO on 2/27/04.
They found severe bowel adhesions, and pelvic adhesions, my ovaries looked like cocoons they were so covered. I have had continued back pain for about five years with no luck on treatment several drs just say I am a drug seeker and dismiss me.
I have had one dr finally who I swear was sent by God himself who has helped me tremendously. He dxs me with SIJ dysfunction. And began trigger point injections. They help a little but not long term.
After the BSO I was hoping for some relief well it was short lived I am now three and a half weeks post op and in a lot of pain. I just called my dr to ask him about the amount of pain I am still having. I am beginning to wonder if it will ever end..
I am only 29 and this is very depressing. I am on anti-depressants and I try to have a positive outlook but some days it is very hard.
I am so glad that I found this site it has been a life saver. Having you ladies to talk to and who truly understand what I am feeling and knowing that I am not going crazy is just wonderful. For awhile I felt so alone and like their wasn't another person in the world who understood what I was going through. Just sitting here I am crying my eyes out with joy to have friends that understand my everyday struggles. Thankyou for bieng here.'
I know this is long so I will close know.
All my thoughts and prayers are with you
Unread 03-30-2004, 10:54 AM
pelvic pain after hyst.

Pelvic pain and low back pain since last lap in oct. to remove scar tissue(no endo found)I had hyst in 2000, was pain free for 2 years, but had many hormonal issues.
Dr. says all she can do is manage my pain with medication, or refer me to a pain clinic. I guess im not alone in this continuous pain cycle.
Anyone want to talk ?
Unread 03-31-2004, 06:55 PM
Count me in

Well, it would be easier for me to list what isn't wrong with me

But pelvic pain is certainly one that is!

I've had almost uncontrollable pelvic pain since hyster ...

Pain free is way past my radar. I gave up on that, it was just too heartbreaking to think that hope was just over the horizon. can learn to live with it.

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