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Chronic Pelvic Pain Chronic Pelvic Pain

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  #11  
Unread 09-24-2003, 01:56 PM
Chronic Pelvic Pain

I too have severe pelvic pain in the right side and it iridiates down into my hip.. although only for the past 2 months and I go for surgery on friday (2 days to go!!)

To walk 100 metres takes me about 20 minutes (slight exageration!?!?!?!) ....

It is a complete nightmare ... the gynae has rushed me into the palace twice in the past week ... I don't have a life at the moment. As I also do not know what is causing the pain I pray that with a total hys and bilateral oopherectomy it will be gone .....

Heres hoping!
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  #12  
Unread 09-24-2003, 02:06 PM
Chronic Pelvic Pain

Dear Toni... I do hope the surgery is the answer for you! s

Patticake and Cookie... I had the cystoscope to look for IC but the Uro said everything in my bladder looked good. I have some bladder symptoms of frequency when my pain gets really bad so the uro thinks the bladder problem is secondary to something else going on in my pelvis. Another doctor said I needed a potassium test to know for sure if I had IC or not... but without any other bladder problems the uro doesn't want to go there... and I don't either if it is unlikely to show anything.

I do so wish there was a cure for IC for all of you ladies who struggle with it!! I wish there was a definate cure for endo too.
Maybe some fairydust will help

Sarah
  #13  
Unread 09-24-2003, 02:33 PM
Chronic Pelvic Pain

Sarah:
Thanks for the Fairy Dust!hahaha

I'm not surprised that your uro thinks your bladder is ok upon exam with cystoscopy. But, many urologists believe that even though your bladder lining doesn't show signs of cracks and bleeding, you can still have IC. Pain and urinary frequency are some of the biggest symptoms. I have a whole slew of other symptoms too....that others don't have...yet we all have IC. Everyone is different, and that's why IC is such an awful disease. Look on these sites:

www.ic-network.com
www.ichelp.com

for valuable info and for other urologists in your area who treat patients regularly for IC. Those urologists seem to know more than the standard urologist, who see a client base of mostly men. Also, on the IC-Network.com's message boards--there's a board dedicated to people with IC symptoms but who have either not been diagnosed or whose docs say they don't have it. You'll find the postings very interesting...and you may find some of peace of mind there.

As for the potassium test--most uros who treat IC patients do the potassium test in the office (however, there are many uros who don't do it at all)...then, if the patient reacts to that test, they schedule the cystoscopy/hydrodistention in a hospital under general anesthesia (outpatient). The reason behind it is if the patient reacts to potassium they more than likely HAVE IC and they more than likely will be unable to tolerate the cystoscopy in the office procedure. The potassium test is VERY VERY painful and the cysto (even under anesthesia) is also very painful to recover from once you wake up.

For quick relief of pain, try the over-the-counter Uristat or other UTI treatment....(check with pharmacist first to be sure it won't react to any other drug you're taking)...it helps numb the pain but you can't take it for more than a couple days.

PM me if you have any other IC questions. Good luck to you!

Mari
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  #14  
Unread 09-24-2003, 04:17 PM
Chronic Pelvic Pain

I'm sure this thread is going to be a very busy one, because I for one cannot believe that they didn't remove the endo at least never mind your ovaries with endo that bad (JMHO of course).....I urge you to get at least a 2nd opinion, there could be many ways to manage this for you and a good endo dr is who to go to for that.....

I got the "chronic pain" label after my hyst because they kept releasing adhesions (and not doing any pathology on them to see if they contained more endo...duh?) and the pain kept coming back....they kept saying I had to live with it, I kept saying "heck no" and finally saw a general surgeon who took care of it for me...which isn't to say that's what you need, I just wanted to let you know that sometimes there is hope....chronic pain does exist for some people, it just wasn't my problem!

hang in there and please don't give up and remember that your sisters are here for ya!
  #15  
Unread 09-24-2003, 09:22 PM
Chronic Pelvic Pain

I can't believe that I came across this thread today. I too have had chronic pelvic pain on my left side for over two years now. Did the endoscopy thing two + years ago which showed nothing. After being bounced from GYN to Digestive doctor with no accounting for pain, it was suspected that I had adenomyosis thus, I had TAH/BSO on 8-1. Two days ago I returned to the doctor's office with flank pain, pain in left groin/pelvic area, burning urination and the inability to completely empty my bladder. I was diagnosed with another urinary tract infection and vaginitis. At around 2 weeks post op was diagnosed with same thing and treated with Keflex. Since then I have taken two more courses of Macrobid for same thing. The day after finishing the Macrobid for second time I went back to find that I still had URI and vaginitis. I was given two more antibiotics, Flagyl and Lexaquin. I was told to call if I didn't feel better after a few days. This morn I felt worse than ever. The pelvic pain that I had before surgery is still there and seems to be worse even though my pathology came back that I did have chronic cervicitis and adeno. I went back to the doctor's office today and doctor said that Flagly and Lexaquin should cover any bacterial infections that I might have. (My urine did look clear today, but my pain has gotten worse. I was put on Dextrol LA earlier in post op recovery because of bladder spasms. Then doctor changed to Ditropan XL to see if that would stop them. Now doc is scheduling a CT scan to see if anything shows up. My bladder is obviously involved but I feel pressure in my bowel too with gas or prior to bowel movement. Doc gave me stronger pain pills to see if we could stop the pain cycle since fibromyalgia is an issue for me. I really hope that the CT scan shows something that can be fixed as well. It is so hard to deal with unidentified pain. My CT scan is scheduled for Sept 30. I will let you ladies know if anything shows up. Meantime I have quit my job after returning to work for 3 days because I can't handle it and this trying recovery. God bless us all. If anyone finds out anything please post. It helps so much to hear the results of others.
  #16  
Unread 09-25-2003, 12:44 AM
Chronic Pelvic Pain

Hello to all...

It is very late where I live ... but I am unable to sleep tonight due to the severe pain I am having right now. It is exactly for that reason that I wanted to let everyone know about a pelvic pain "side affect" that I am now struggling with.

I have been dealing with pelvic pain since 1990. Over the years it seemed that I would resolve one problem only to come across another that would continue the pain cycle. As a result, over the years the muscles around my pelvis and my pelvic floor have become an increasing part of my pain. I have been told by multiple specialists (one from Johns Hopkins) that when pain signals travel repeatedly over the same path they start to spill over into the nearby pathways... this causes the brain to think that there is pain there too... and when it is a nerve pathway from a muscle, the muscle will respond by tightening up.

So, as a result of years of pelvic pain, years of the above happening, and years of probably compensating, my muscles are all messed up too.

I mention this also because the pain from the muscles can feel like it is deep inside... After the one surgery I had that really helped my pain level, it took 4 months for my muscles to relax enough that I could tell a difference... and then I gradually started to feel noticeably better. Prior to that I thought the surgery had been a failure.

Since I had a pain mapping internally I knew what things inside my pelvis were causing me alot of pain. And since I saw so many PTs etc for my muscles, I knew how screwed up my muscles were too.

Please keep this in mind for your journey, ie. how the muscles can become part of the problem.

I don't know if the PT will be able to help or not. I have been told that I have to resolve whatever is triggering the muscle problems before they will resolve. I do believe that since that is exactly what happened in 1999-2000.

So that is my story.

Many s to all of you.

Sarah
  #17  
Unread 09-25-2003, 03:19 AM
Chronic Pelvic Pain

Kelou:
It sounds like all your pain and other symptoms warrants a visit to a urologist...one who treats at least as many women's disorders as mens. You really need to ask that question when seeking a urologist. I have Interstitial Cystitis that took 4 long and painful years to diagnose. Many of us with IC have had hysterectomies, scar tissue, ovarian cysts, IBS, Fibromyalgia, mitral valve prolapse, migraines, etc. Because IC is a combination of things, it's very hard to diagnose. But, when you've gone on rounds and rounds of antibiotics and it still feels like you have a UTI, then it's time to suspect IC.

Please check out these 2 websites where it lists lots of symptoms of IC. Everyone is different--you may have some symptoms, all the symptoms, etc. No one reacts the same to their symptoms.

www.ic-network.com (they have a great message board too)
www.ichelp.com

Both sites also list urologists who treat patients for IC. Try to find one close to you so you can get some pain relief. I'm not saying that you have IC...but it should be investigated. Half the battle is knowing what you're fighting against.

Also--in the meantime, try watching your diet. AVOID at all costs--any caffeine (including chocolate--white chocolate seems to be ok though), alcohol, acidic foods (such as tomato in any form, onion, spicey spices, citrus fruits & juices--especially CRANBERRY)...and see if that helps your pain. You have to eliminate food offenders in order to see if your pain is helped. Both web sites above list foods on the IC Elimination Diet--as well as foods that most IC patients can tolerate.

Sarah--what you describe is also a symptom of what a lot of us with IC have--Pelvic Floor Dysfunction. I see you've gone to PT--but has the therapy actually involved the pelvic floor muscles? The urologist should be able to refer you to a therapist who works with Pelvic Floor Dysfunction (PFD) patients. Lots of people in my IC Support Group have this problem (me included).

I sure do hope both of you get some pain relief. One other thing Kelou--pain meds is a huge trigger for IC pain. When pain meds travel through the bladder they cause lots of problems. You might try an over-the-counter UTI remedy, such as Uristat or Urised (check with pharmacist first to see if it will react with anything other med you're taking)--this usually numbs the pain, but you can't use it more than a couple days.

Good luck to both of you, please keep us posted.

Mari
  #18  
Unread 09-25-2003, 07:22 AM
Chronic Pelvic Pain

Dear Mari,

Yes, I have started PT again. I have been in and out of PT for years. Orginally my pelvic floor was not involved.. the main muscles involved then were the iliacus, the rectus abs, the obliques and the gluteal muscles.... now my pelvic floor muscles are joining in the party. A neurologist I saw from John's Hopkins said it was not unusuall for women with endo to develop the muscle problems like I have... it is something with the way pain is referred and the body's reaction to pain. I imagine it is the same for women with constant pain from IC.

The PT I am seeing specializes in pelvic floor treatments for pelvic pain and bladder problems. She sees alot of women with IC too.

I was in PT a couple months ago but stopped as that PTs methods were very painful and unhelpful. She did alot of pelvic floor massage internally which was exceedingly painful and I realized later... very traumatizing. The new PT utilizes the approach infrequently and instead said she will probably use ultrasound... that is what she did yesterday. I am in so much pain today but she said it might take a few times to help.

Many s

Sarah
  #19  
Unread 09-25-2003, 07:33 AM
Chronic Pelvic Pain

Oh gosh - This morning is horrible. I am going to have my pelvic CT scan today - and didn't take my pain meds, because it is further to drive than just from home to work. And am I paying for it. I tell ya - if they don't figure out what is wrong soon . . . I ain't gonna make it. I can't sit at my desk in tears all day without losing my job. Pity Party for me today . . . . cross your fingers that they find something - -anything . . . . I have to finish drinking this nasty stuff they gave me to take before the test -- eeew - it is bad . . . thought it would make me go to the bathroom - but I drank one last night and one this morning - and didn't go . . of course, now I feel like I am going to pop.
  #20  
Unread 09-25-2003, 07:52 AM
Chronic Pelvic Pain

Dear Mari,
Thank you for the information. I will check out both websites. I was especially interested in your comment about the pain pills. I thought it was my imagination, but I seemed to notice the pain increasing once I took the pain meds - until they totally blocked everything. I do agree that I handle pain much better emotionally when I know what I am fighting against. When I was finally diagnosed with Fibromyalgia I was so relieved to know there was a problem physically and not just "in my head". So this new info really helps. I am scheduled for a CT scan on the 30th of September and I will report those findings as soon as I get them. Thanks for taking the time to reply.
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