My Story My Pain

I have suffered with chronic pain and health problems for many years. This is one reason I wanted to create a web site was to help others and to tell my story.

It all probably started when I was about 15 years old.
I started having abdominal pains. My mother took me to the Pediatrician, Gyn, and GI doctors, all coming up with their own theory on what could be the problems.
Which would range from irritable bowels to cyst. I would just bounce from one doctor to the next with an occasional trip to the hospital , because I had doubled over in pain somewhere.
In 1988 my husband and I got married, he was in the navy stationed in Orlando at the time.
We were trying to conceive and not having much luck. I finally went to the base doctor and they told us we need to try for a year and then come back.
So one year later I came back in.

1989 still having problems conceiving, after running some test he decided to perform a Laparoscopy to see if he could figure out what was going on.
Well after he went inside he realized that things were worse than he expected and beyond his field. He closed me up and sent me to a specialist.

Same year 1989 I went in for another Laparoscopy where he told me I had massive amounts of adhesions, endometriosis and my uterus was turned side ways. So he needed to do another laparoscopy and an uterine suspension to put my uterus back into place and clean out the endo and adhesions.
Because of the massive amount of scarring he could not say for certain, if we would be able to conceive.
Well we were very fortunate ,and I was able to get pregnant but in
1990 we lost our first born son David to a rare chromosomal Syndrome Called Trisomy 18.
Our son was delivered Via emergency C-section when I was seven months pregnant. His
death took a tremendous mental and physical toll on me. I did not recover well from this C-sections.
I developed a nasty uterine infection,
and bladder infections that did not seem to want to go away. So I spent many of months going back and forth to the hospitals, and doctors for treatment.
Seven months later I became pregnant with my daughter Jessica. A very long and painful pregnancy.

In 1991 she was born C-section.
I was two weeks over due and carrying at very high presentation, which made it too dangerous to try and induce. Well I did not care how she was born so long as she was born Alive.
Three months later I suffered a miscarriage, which ended heading me back and forth to the doctors with abdominal pains, not always knowing the cause, but believe the endo and adhesions were coming back. As well as chronic urinary tract infections because, of the uterine suspension.
My uterus now sat lower than the normal person pretty much on my bladder, which caused my bladder not to empty all the way. About every three months, I would come down with a horrible UTI.
So I would go back and forth from the gynecologist, to the urologist.

1993 I became pregnant and gave birth to my son John, another C-section, and the same story I was over due and carrying at a very high presentation.
After his birth again, I was back and forth to the doctors with the abdominal pains and problems.

In 1994, I suffered yet another miscarriage when I was around 6-7 weeks pregnant, after that they decided to go back in and do another Laparoscopy. Where they found that the adhesions had indeed come back, as well as the endo, so they cleaned up the endo and adhesions and sent me on my way.
Hoping this would be the end of my pain and surgery.

1995 I became pregnant with my daughter Jennifer. The doctor was not thrilled about this pregnancy, they wanted me to have my tubes tied, after my son's birth. But my husband and I wanted one more child, And then we would agree to have no more.
Well this pregnancy as they say, was the one that tipped the scale for sure.
It was a very difficult pregnancy, I was in chronic pain the entire time.
My blood pressure was now 200/100 my heart was starting to give me trouble again. I had problems with my blood pressure and my heart before, but usually a few months on medication and it would lower my blood pressure back to normal.
The pregnancy was monitored very closely, by my seven month every week I walked in thinking this would be the day they would have to deliver her.
They said if she showed any distress they would have to perform an emergency c-section.
She was a trooper, but it was mom that was having all the problems. But I would rather of had it be me than her anyways.
Well she decided to come two 1/2 weeks early. Wouldn't you know, She was the first one that I really went into full labor with.
During the beginning of the pregnancy, I was really hoping to go V-Bac with her, but because of my history with surgeries, and my blood pressure they could not take the risk.
So when I arrived at the hospital she too was delivered via C-section, and this time I did agree to have my tubes tied.
After the delivery of my daughter I was in a lot of pain,6 weeks later I still could not walk or move around. I went back to my doctor and he knew the time had come to go back in. My abdomen was very bloated, and to even slightly touch any area of my stomach I would jump off the table in pain.
He gave me Demerol for pain, which is the only pain medications I can take, since over the years they found out that, I was allergic to just about every other pain medicine there is.
Well he tried a few different medications hoping they would give some relief but none of them did.
Finally he puts me on Lupron shots.
Which I have to tell you that drug was a complete nightmare for me. The Lupron gave me horrible bone pain, and did not bring me much relief from the abdominal pains. He finally prescribed Estrogen with the Lupron to lessen some of the side effects. That too did not bring too much relief.
We both knew he was just buying time before the surgery.
So I spent six months on the Demerol , Lupron and estrogen.

Finally six months later,(1996)
He said, well I think we are going to have to do the hysterectomy fine by me. Since I knew I could no longer have children and if this was going to make me pain free well lets go for it, and to remove everything.
Well he said he was going to try to do the vaginal hysterectomy.
He began with the Laparoscopy and started the vaginal Hysterectomy, when he stop right in his track. He was completely blocked by massive amounts of adhesions.
So he stopped and went through horizontally, he was absolutely amazed when he got inside me, and now realized why I was in so much pain.
And to this day is in shock how I ever conceived my last child. I had massive amounts of adhesions. The entire abdomen looked like one big spider web.
He could not see my bladder for it was walled with adhesion, and I had this softball size of adhesions, that had been sitting on my bladder which shrunk it down to a 1/4 of its capacity. Unfortunately still to do this day I have not gotten back to its full capacity. My right ovary had been pulled an attached itself to the front of my uterus, my right ovary was twisted around my appendix. I had some kind of infections that actually burned a hole, that he needed to graph, everything else was covered with cyst and endometriosis. He said a normal hysterectomy would takes about three 1/2 hours mine took over five 1/2 hours. Well it was certainly one for the books. In all his years he had never seen a young women with so much damage. Well the surgery was long and rough, my heart went erratic during the operation, which of course made him nervous.
Thankfully I was asleep the whole time:
My poor family was a wreck waiting.
After the surgery he did inform me that he left my right ovary, it was damaged but savable. I honestly was very upset and told me the odds of things going badly again would be slim. I told him, you know me, and you should know not to play any odds. Well sure enough a month later I am still having right sided pains.
He could not believe it, so now he needed to wait again before he could operate and remove that ovary, This is now my 12th abdominal surgery. He too was upset and felt very bad, he thought he was doing what was best because I was only 29 years old, he did not want to remove my last remaining ovary.
He ran many test which showed another large cyst on the ovary, and adhesions starting to form again. While waiting for the surgery I started having upper abdominal pains well, before he could operate he wanted to find out what was going on there. So sent me to a GI doctor. He performed an endoscopy which showed I had several small ulcers. Big surprise with all my stress huh.

In (1997) he removed the right ovary ,which again was covered with adhesions, endo and was strangling the appendix. So here we are again, hoping this was going to be the last of my problems.
Wrong.

(1998) I am still having abdominal pains, my weight has dropped to 89lbs, I am having severe joint and bone pain, which has made it impossible for me to function normally. Recently I was sent to another doctor who diagnosed me with Fibromyalgia, and prescribed Amitriptlyine.I just recently started the medication and they said it will be a good month before they know for sure how well it's going to control my pain.
I Just recently went back to the doctor, and they increased the Amitriptlyine.I. I to 50mg. I am still only get mild relief from the joint/bone pain ,but the chronic pain in my back and side have not been affected, even with the daily Demerol.
So we have come to the conclusion that I am going to need to go back to the surgeon and have them go back in and see what is going on. Anyways any more updates I will keep you posted.
Sept'98. New update I recently was sent to a pain management clinic. Well after the doctor checked me over he too agreed, that they really did not want to operate since this would probably produce more problems. So he placed me on another two medications to try to help with the adhesion pain .
If these medicine do not work they will then start injections for pain relief, he also left me on the daily doses of Demerol. The two medications he has placed me on, are supposed to bring relief to people suffering from severe adhesions. Only problem is they are very sedating drugs, so with those two new medicine the Amitriptlyine for the Fibromyalgia and the Demerol I am a walking zombie, which is really upsetting me since you know I have three young children I am trying to take care of.
Anyways I will let you know how these two new medicine work and if I will need the injections. That's about it for now.

Update Oct 98,
Well I went back to pain management and they took me off the two medicine and tried injections. Oh my gosh I have to tell you how painful these were.
How I would rate these injections, well I have had many epidurals and spinals, and it hurt worse than those, not sure if it was because they were entering the injections into a few of my trigger points, but I walked out of there feeling worse than when I went in.
It has been two days later and I am still very sore from the injections, and my pain in my right side, abdomen and lower back is still there.
They said it may take a few days before I notice any change, since the injections aggravate the area's in the beginning

Nov'98
Well here I am again. The injections failed, they did not bring any relief at all. I am still bouncing from doctor to doctor. I just had another appointment with a Gastro Dr. Who is going to run another Cat Scan, they are trying to figure out if I have any blockages from the adhesions. I am also on my way to a Chiropractor, I think they are just going to send me down the list of the doctors and hope one of them figures something out. Next is acupuncture. If all these come up with nothing. The Pain Management have come up with a temporary fix. They will go in and remove the nerves in my abdomen and hope to bring me some pain relief.
Will it be permanent, probably not. How long will it last, they cannot say for certain. But I am very limited to options. Well I went for my appointment with the chiropractor, come to find out my spine and neck are curved, and I have a disk out of place in my neck and spine.
Oh thank you needed something else. He was concerned though when he was doing his work up, he found my left side to have some type of nerve problem, you know where they hit your leg with those reflex hammer. Well he hit it several times, and my leg barely moved, He said it's probably due to the adhesions cutting off some nerve area, not much he can do about that, but he is going to try to elevate as much pain as he can in his field.
Went back to Pain Management they are going ahead with the nerve block in my abdomen, That is scheduled for Jan5th.They are going to deaden the nerves in my abdomen, and this will let them know if the surgery will take or not. Well that is about it until next time.

January 1999
Well I went in for the abdominal nerve block, The doctor was having a difficult timing trying to locate the correct nerve to block, and kept hitting the large nerve that you have in your leg. This is when the procedure becomes painful, they cannot give you anything for the pain ,because he wants to know when I do feel pain, so he will be able to pull off and reinsert another way. Well the nerve block was done a few days ago, it did not bring me any relief, He is not sure if he may have gotten the area he wanted, so he has scheduled me for another abdominal nerve block January 29th.He did say that he would still like me to consider having the surgery to cut the nerves in my abdomen, so he and my gynecologist are discussing this.
My gynecologist is not thrilled about this idea, but we will see what is going to happen.
During this time my back has gotten worse, they are going to run a MRI on my back to see if the disk that is out of place is more severe than he though, he does believe that I do have adhesions in the back, and this too maybe causing the extra pain. Well the waiting is continuing will let you all know when the updates come in.

Update Feb'99
Well went in for my second Abdominal nerve block, this one took better than the last one, they were able to block about 50-60 percent of the pain, I did develop just a minor complication, he hit the nerve the one that runs to your leg, pretty good. The leg shot up and came crashing down on the table. My leg went completely numb for awhile, The numbness went away in recovery, but not completely.
I am still suffering from horrible shooting leg pain, and painful pins and needs in my right leg.
Doctor told me it may take a couple week before the problem disappears. But since this procedure went well, he is recommending me for the nerve cutting procedure.
.I have no dates set yet, I have to go in town to Boston and speak with a specialist about the procedure. Unfortunately there are some set backs about the nerve blocks that are done, they are only temp nerve blocks last about 6-8hours,but the pain comes back worse, so from the first one they triggered additional pain and problems, and now the second one added more pain. They increased my pain medicine to help me get through until we see the specialist. Well that is about it for now....

March'99...
Well not much news on the abdomen the doctors are still trying to find the best surgeon to take on the case to remove the adhesions. I was sent to a back specialist to figure out what is going on there, since I was getting no relief from the Chiropractor and physical therapist. I am now waiting the results from my MRI last week about my back, we did find out that the adhesions have gone into my back and are pulling on the disk, as well as the hips.
One hip is being pulled one way, and another hip is being pulled another way. Everything is completely out of alignment no doubt in his mind that every step I take is excruciating. The neck as we knew is curved with a disk out place which is causing terrible shoulder, neck ,and face pain.
I have a horrible case of TMJ, My jaw is completely out of alignment, Need to make an appointment with an oral surgeon to figure out what they want to do. The rib cage is totally locked up from the arthritis, and during the physical exam he could feel solid masses in back and abdomen which is surely the adhesions. As for the disk they are unsure what to do because its adhesions if the disks are too damaged they will have to do surgery to repair them, but since its adhesions causing the problems, surgery will only produce more adhesions. And I will be right back where I started from. The end of the month I go back to Pain management to discuss a better for of treatment for the pain. The Demerol is no longer relieving the pain and I am feeling worse and worse each day, along with each day new symptoms of popping up, and they need to start addressing those to make sure there is not something else.
They believe that I have the arthritis, in more of the areas than have already been diagnosed and it's not just the FM that is causing all the joint pain..
They are finding things so difficult, because so many different things are going on in my body ,and they cannot keep track of what is causing what pain anymore.
All I know is the pain is getting unbearable I was placed on ten mg of Ambien to help me sleep, It does knock me out But I am still only averaging a few hours sleep because the back, hips, abdominal and other pains are waking me up. For now we are still playing the waiting game, and bouncing from doctor to doctor and running more test.

April'99 update
Well things have been pretty hectic here, I have been bouncing from one doctor to the next trying to figure out what to do next. I went and saw a reproductive&reconstructive surgeon in Boston. I did not hear the news I hoped for. The procedure to have the nerves cut in my abdomen would be no good for me. Since this procedure will only block mid abdomen pain, which is no good since so much of my pain is in other areas.
The appendix which amazes him that has never been removed yes amazes me too) is extremely scarred, along with the liver&bladder, and probably a whole bunch of other area's. We already knew the adhesions have moved towards the back and hips very uncertain what to do about them. Our next course of action is to begin more testing and try to see how much they can find out through scopes. They are going to scope the bladder, bowels, and an upper GI ,the pains in my upper abdomen may not be the ulcer flaring but adhesions moving upwards as well. I tried to see if it was possible to have them go back in, and just clean up the adhesions maybe a little reconstructive on the area's that need it.
Again another surgeon who said we will use that an only last resort. Which is really frustrating for me, but I do understand why, its not a great idea, but still any relief is better than none.
Since I have had so many surgeries, and they have played with the organs so many times they are afraid of them breaking down.
I honestly do not know where to turn and what to do anymore. I have done these test over and over again. All coming up with the same answers the adhesions have moved on. So meantime I will be referred out to another urologist, gastroenterologist doctor ,rhuematoid doctor for all the joint/muscle pains, and addition pains and problems, I need to see a psychiatrist who specializes with chronic pain patients.
And of course stay with pain management who needs to decide a better treatment for pain, since I have become tolerant of the Demerol, and it is no longer relieving the pain. On a different note I see a special physical therapist that specializes with chronic pain patients.
She uses visceral mobilizations, myfasical release and a few other treatments. This treatment is supposed to be a gentle form of stretching that help repair body tissue, relaxes the body so it is not in a constant spasm's have only started seeing this woman who is very kind, she is going to try everything she knows to bring relief from the adhesion pain, She hopes that she can at least bring relief to all my joint, muscle pains. So any relief to me is a plus.
Unfortunately some of this treatment is not covered by insurance so its more money out of our pockets. I saw an oral surgeon about the TMJ unfortunately the mouth piece is not covered by our insurance company, so it will be sometime before we can afford to have the one made. As I said its been very hectic and will continue to be so over the next few months while I get re-assed by the new set of team doctors.

July'99
Just a quick note, life is still very hectic here. I am still visiting with many new doctors. I am going in on the 15th of July to have a procedure called Cystoscopy done. What they will be doing is entering a scope inside the bladder to check for a disease called Interstitial cystitis, while in there he will do a biopsy of the bladder and check to see if there is any other problems going on in the bladder that we are not aware of.
Early that week(13th)I will be visiting with the Pain Psychiatrist to discuss some techniques to help me understand and deal with these pain issues. End of the month I will be visiting with the new GI specialist, so guess we will have to wait and see what these doctors to have to say. Until then.

July'99
I went and visited the pain psychiatrist, very nice woman. We talked for quite sometime about me and my pains. She age's I do quite well handling all of this, Yes I have up days and down days and the down days can hit me quite hard, but I do try very hard to pull myself up and keep going and honestly that is what counts, So there is really no need for me to see her, unless my downs become longer and more difficult to handle. She gave me a list of relaxation tips to try. So I will give them a whirl.
I went for the cystoscopy the other day. Unfortunately they send you home with a catheter, this saves the hospitals money by not having you stay over night. That part irks me a little but not much I can do about it. The catheter had to stay in for 24 hours, to give the bladder time to heal. I am still in quite a bit of pain, they gave me bladder relaxes, pain meds, and antibiotics to prevent infections. I was placed under general, where they did the cystoscopy few biopsies of the bladder won't know the results for 2 weeks until I return to the doctors. They checked for IC (Interstitial cystitis) which I do have. We will discuss treatment when I return. There is no cure for IC.Yet another condition which there is no cure, but there is a good chance he will be able to bring it under control. This may take months to accomplish, but something to look forwarded to. Well next week is my GI and following week is my return to the Urologist, so until then..

August'99
Life is about the same, I am still bouncing from doctor to doctor. Pain level is the same if not worse. I have started on two medications for the interstitial cystitis. Dr said it would take anywhere from 3-18 months to find out if the meds have started to work, So I will see him in 3 months for a recheck.
I just recently went for 2 more test. First one was another Endoscopy, I had this test not too long ago, it was a breeze. WELL second time around was not a breeze at all. The meds they give you to sedate you through the procedure did not take at all. I was completely awake and alert through the entire process, not a fun to say the least. GI doctor did feel bad and said a small percentage of patients have this happen, more than likely due to the fact that I am on so many meds, that it now takes quite a bit to sedate me. Well lived through it, and confirmed ulcers and GERD, increased Prilosec to 2 times a day hopefully this will help. Has not helped much yet pain wise, but the vomiting has slowed, which is a plus.
I also just had another double barium contrast done. Not too sure about the results this was the other day, and Radiologist Dr of coarse would not indulge any information. This was an extremely painful test for me, the adhesions and my abdomen do not like anything or anyone messing around in there. After the test I was pretty much bed ridden for a day a half trying to get my abdomen to settle down, between the invading and the gas that they inject into the bowels was not a great experience mildly speaking.
I am curious to hear from my GI doctor, I over heard them saying the barium was not passing through Sigmoid, which probably means another blockage. Hopefully one I can pass myself. Will let you know about that on my next update.
Recent problem I am having is Severe Face pain, I am unsure about the cause, and will be visiting a head, neck and face specialist to find out what is going on there. The pain has gotten so severe that it is becoming quite difficult to talk or eat. The Demerol that I am on, is not touching the face pain at all. So again its more waiting to see what else is going wrong in this body of mine. until next time
Hugs and prayers to all my friends.

2006
Well I will try and give a quick update on me.
The pain is still the same, just more area's that bother me.
I am still taking pain medication, Demerol, Robaxin, Neurotin, Premarin, Ambien, and Zoloft.
Several years back I went back on Antidepressants/Anxiety medication.
I still have been trying Epidural blocks, trigger point injections to try and bring some relief. Unfortunately they have not worked too well.
Pretty much doctors have just left me out in limbo. Unfortunately Doctor's still get stumped when it comes to dealing with Chronic pain.
In 2002 I did undergo another surgery. They needed to Perform an Appendectomy as well as clear up some adhesions that were sticking and causing problems.
Again unfortunately they returned quite quickly.

2006 September I also needed to have a surgical breast biopsy, I had a lump that concerned the doctors. The positive news it was benign , the bad news is the surgery did not go well. The doctor had gone in and removed the lump, went to recovery was doing fairly well sent home. A few hours later my breast was swelling at a very fast rate. I went a cup size A to a Double D. The pain was intense. I called the doctor, he had me go to the emergency room. He at first did not believe me that my breast had to swelled to a Double D until he saw me, and realized that I needed emergency surgery. He at first thought it was 1 bleeder in the breast but it was 3 bleeders in the breast. What started as a 1 inch cut became almost a 4 inch cut, with 2 other small incisions. 1 for the drainage tube another for the scope.
He did tell me after the surgery that this was the first time he had encounter a problem with a surgical breast biopsy, and shockingly that I had 3 bleeders going on. I told him trust me, if something was going to go wrong with patient, that patient would be me.
The healing process for the surgery has been long I am still suffering with minor pain from the incisions, wearing a bra is very uncomfortable. Due to the severe swelling in the breast it had caused my right arm to become numb, I had already suffered with shoulder and carpal tunnel in now both hands, the right far worse. But the surgery has increased my shoulder/arm/hand pain full force. I am due to see the Neurologist to decided what he would like to do now.
Well I think for the most part that is it.

I do have to say I am still blessed though, For I have my husband David and my three children Jessica, John and Jennifer they are the best family anyone could ever ask for. They have given me so much love and support that makes each day bearable.
The Song in the background is dedicated to them.