Continuing chronic pelvic pain

I haven't been around in a long time but felt the need for some HS support and input here. I had my TAH in 2006 and another abdominal surgery in 2008. Since before that last surgery I have suffered from continual, chronic pelvic pain. The pain centers on my pelvic/abdominal scar and sometimes feels like a hole is being bored through me. It reaches all the way through to my back and around through my hips. Sometimes it's not as bad as other times.

My GYN said a couple of years ago that there wasn't much more he could do because he suspected adhesions. However, recently I saw the PA at my GPs office, who is awesome, and she advised me to schedule a pelvic ultrasound with my GYN to make sure there is nothing left or there is no mass, etc. Last week I hurt so bad I would swear I still had a period. I use a TENS machine almost daily and sleep with two heating pads at night.

Could something possibly have been left behind and be causing this pain? Has anyone ever heard of this? My GYN was very receptive and scheduled me for a visit and ultrasound tomorrow morning (I scheduled this last week) so at least he's willing to check and see what we might or might not see.

Any input is MUCH appreciated!

Thanks HS!

Hi Lisa,

I have a long history with this! LOL...Im so sorry that you have not found an end to your pain. I would def get the ultrasound. I have had surg to remove adhesions and have had them reoccur. Idk if you have them or not ( im no dr just a lifer!) i do know by experience that they are like endo they do not show up on any test or ultrasound. The only way to know for sure is lap. Please keep me updated on what your dr and tests say. Hugs

Thanks Rhonda! I went to the GYN Thursday and we talked for awhile and then did the ultrasound. That is clear, nothing abnormal showing. What I'm coming to realize I think, and this is what my GYN thinks, is that my pain may very well be caused by the Interstitial Cystitis that I was positively diagnosed with in December of last year. I had a bladder distention in December to fully diagnose and hopefully help treat the problem. It did diagnose me but did not help with the problem.

If you know anything about IC, you know that it is SOOOO aggravating and painful. You feel like you have a UTI all the time but there is no infection. After a lot of research, I've found out that IC is a very complicated medical issue. IC is not just a bladder issue but has been linked to chronic pelvic pain and migraines (which I started having chronically too in August 2009).

I am on Elmiron for this issue now; have been since January. It has helped the UTI feelings and such, but not the pelvic pain much. My GYN wants me to give it 2-3 more months; Elmiron is not an instant cure, it helps repair the lining of the bladder so can take several months to a year to show progress. After that he is very willing to refer me to pain management but I am not sure I want to go that route. I take a lot of medications as it is and don't really want to add another (such as Neurontin or Cymbalta), especially when I don't think they work that well from my research.

I use a TENS machine quite a bit and it does help. If I need to learn to live with the pain, I just need to know and wrap my head around it...and get counseling probably! My GYN gave me 15 Lortab 5/500 which is like throwing a bucket of water on a forest fire, but I took them willingly. I see my urologist next week so I'm going to discuss with him too; I need to understand more about this issue I have so I can deal with it.

All that aside, I definitely have adhesions. That's why my GYN would not take out my last ovary laparoscopically in 2008. I know that sounds backwards, but when he took out the first earlier that same year I had so many adhesions he almost had to open me up anyway so at least he knew what he was in for the second time. I don't have the "pulling" feeling that is usually associated with adhesions though...do you? Is that always present with adhesions pain and discomfort?

Thanks for your input Rhonda...I really appreciate it and will let you know what my urologist says next week!

Lisa,
I am sorry to hear you are still experiencing chronic pain. I know well how that feels. Have you thought about accupuncture? I was on pain meds for 15+ years and am finally now off all of them. It took me awhile to get to that point. My doctor stated to me that after so many years of being in pain, my body did not know how not to be in pain. While I still have issues, the chronic pelvic pain and nerve pain I was experiencing are 99% gone. I feel twinges here and there, but it is not constant and usually only lasts a few seconds once every few weeks or so.

Being in constant pain also takes a toll on the body and the spirit. I am and always will be a fighter, but I didn't really realize what being in pain was doing to me. I now have a weakened immune system and digestive issues. I truly believe that it is the years and years of pain and other issues that have taken its toll.

Take care.

Hi Otessa,

I am very familiar with IC. I havent been diagnosed but I have a bladder lining that stays cronically inflamed. I can go from 0 to blood in urine overnight! I have done 6 rounds of bladder treatments. They mix cocktail of meds and deliver directly into bladder. This usually includes numbing meds and also antibiotics. They mix for the individual. I also have a pelvic kidney that has collapsed onto my bladder (lack of support from reproductive organs) so for me the treatments did help. My bestie has IC and has done the emeriol (sp?) and it didnt seem to help her. She avgs distention surg. about every 2 years but she doesnt have pelvic pain from her IC only bladder. I have both. My adhesions are so severe that my urologist wouldnt try to even fix my collapsed kidney he sd he wouldnt come near me with a scalpel ! LOL but he meant it. I have tried all manner of drugs for pain and have been allergic to all. Kim is right about the wear and tear on the body and mind from pain long term. I have found great relief from accupuncture and herbal meds. The herbal meds have worked so well for keeping my inflammation in check that I have figured out that half of all my pain is due to inflammation from bladder and adhesions. My acc guy is also having me massage adehsions and also doing cupping technique. We are trying to get the body to reabsorb the adhesions. Please keep us up to date on what the uro says ! Will always be here for you.

Hugs...Keep positive and keep posting

Rhonda

wow, you guys are telling my story...i dont even have to say anything, except i'm new, and it feels hard to keep fighting. im 30, 9mon post op, w severe i.c and endo for last 15yrs. cramps went away until 5 days ago, i've been in an i.c flare since dec. did allll the treatments, on so many meds. toviaz, elmoron, antihistimnine seem to be helping until cramps came. now everything is as bad as b4. severe cramps, headaches, very tired, then bladder acts up when cramps happen. i feel terrible right now, and i dont know where to go or what to do. already go 2 pain clinic, but like others, want to make sure nothing got left behind or adhesions. gyn said i make her feel like a failure, got frustrated that i'm her worst case. she and othr drs tried convincing me and did convince my fam that it was in my head, bc im so young, until they opened me up and saw my ovary attached to uterus w endo, and my bladder looked like freddie crugger slashed me...so i feel paraniod about drs. i know its not in my head. i dont want to be like this. i have fibro, too. i dont know where to go from here, and i feel very alone..

I'm new here as well, but have suffered from adhesions, with dx, since 2009. I'm 31 and feel 81 most days! I've had 3 surgeries to remove adhesions that had connected my bladder, stomach, bowels and uterus together as well as to my abdominal wall. My obgyn who did the surgeries ended up removing my left ovary and uterus due to the damage the adhesions had caused. It has taken me since my hyst in 2009 to find a new doctor who is even willing to admit on paper that i have adhesions. Sadly my Rhuemy who dx my fibromyalgia is in total denial of my severe adhesions, even after they showed up on x-rays and a mri, which is very, very rare! My PCP was the same way, until recently. I gathered all my obgyn files, info on Abdominal Adhesive Disorder as well as Adhesion Related Disorder (ARD) and begged him to please review it! In 24 hours he had called me to tell me most def he felt i had ARD! We both felt that with this dx, i may have better luck finding a doc who is simply willing to manage the condition with me, by keeping track of updating scans, blood work, pain levels and such. So far, i'm still in search, but have found a general surgeon who is at least willing to speak to me regarding my films, files and current symptoms! No pain meds really seem to work, unless hooked up to a IV in the hospital, to manage the pain of your organs being pulled out of place sadly. Have any of you brought up the posb of ARD to your docs? What kind of docs do you see for your adhesions?

	Quote:
Originally Posted by sick and tired Hi Otessa, We are trying to get the body to reabsorb the adhesions. Please keep us up to date on what the uro says ! Will always be here for you. Hugs...Keep positive and keep posting Rhonda

I am very curious what you are doing to get the body to reabsorb the adhesions? Can you expand on this?

:wave pagau 85,

I have been seeing a md/acupuncture dr. I am on 3 different herbal medicines. I have also started physical thearpy with person in same office as other dr. The pt is has history of working with patients like us! The work is painful and hard as he is twisting and pulling my adhesions to get them to unattach from my organs. The md/accup dr. says that as they become unattached then the body can start to reabsorb them. During my hemmoraging stage my body absorbed all the blood. So, very likely, my body can do the same with the adhesions. It will not be overnight and will have to be patient. This road has been very long for me (most of my life) so a possiblilty this can work i can hang on!
I do not know where you live but im going to Vanderbilt Hospital for Intergravtive Health in Nashville, Tn. Keep positive and keep posting,
Best to you and Hugs !!!!!
Rhonda

I really hope this works for you and look forward to you posting your updates to let us know how everything goes.

I just started having severe pelvic pain about 2 months ago. My hysterectomy was 2 years ago (daVinci, left cervix and ovaries). I had a great recovery. Last Aug, my left ovary had to be removed laproscopically, it had a solid mass (non-cancerous) the size of an orange attached to it and the colon. Again, my recovery was good, not as fast as I expected but still good.

I really don't know what is source of my pain yet. I am curious if it links back to the last surgery. Two months ago, pain started in my back flank/kidney area then radiated into groin area so I thought it was kidney stones. I have always been extremely healthy and am fortunate never to have experienced kidney or bladder issues. So my guess was based on where the pain was and google. The pain is worse in the mornings, right after I get up and start getting ready. I usually have to sit back down for a few min. Then it becomes manageable and I continue. What is really weird, is bending over really hurts, not my back, but my flank area (or love handles) and my lower abdomen. After a week, pain didn't go away but instead seemed to get worse, I went to an Internal Medicine Specialist. CT, MRI, blood-work, and urine cultures all came back negative for anything that could be causing this type pain. He even thought it might be musculoskeletal and those test were negative. I am scheduled for a colonoscopy next week - yepee for me! This will be my first. Based on what I have read from my sisters in this forum, I doubt that he will find anything and really hope he does not due to what it means if he does. Everything keeps leaning toward adhesion from the surgery or surgeries. It is just odd that they started hurting several months after the surgery instead of immediately. Not sure what next steps will be, but based on your information, Vanderbilt is an option, I live in the Huntsville area. I have a feeling, this Dr. is not going to give up easily though, which is good for me.

One of the greatest things about this site is it provides information that prepares me for my Dr. visits. To be honest, I had not considered adhesions as a culprit until I started reading these post. Thanks sisters for the info and I hope there is relief in site for all.