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Old 06-09-2008, 09:55 PM   #1
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Unhappy Pain due to endometriosis, back, Irritable bowel and bladder help

Struggling to stay on top of pain as have damaged facet joints in back, Irritable bowel syndrome, bad endometriosis and something wierd happening with my bladder.

My doc keeps saying its ok to keep increasing my morphine, I am keeping a pain diary but in so much pain haven't slept in 2 out of 3 nights. Don't want to go to the hosp as they keep bouncing me between departments every1 blaming another condition.

Concerned about how much pain I'm in, I can't eat, on liquid vitamin drinks and have had to use an insitu catether as v painfiul after going to loo.

Taking more and more morphine 40 mg 12 hrly + 20 mg 4 hrly + paracetamol, ibruprofen, dihydrocodeine diazepan and 50 mg amitritypline to reduce spasms in back.

Did have bladder infect, doc says probable ibs or endo, keep taking morphine until upping levels until pain under control when episode has passed can reduce it. Don't know how many more nights sleep I can lose, luckily I don't work, I'm too ill so can nap when pain lets me.

Docs have also said "hope u don't have rta as they wouldn't know what to give u you're on so many meds" and that was before they've been increased so much.

Only see Pain team if in hosp, don't know if idea to try and get to see them. Going to speak to my doc in morning and see her suggestions but think she's going to say either hosp or manage yourself. I wouldn't be so worried if I was sure it was preexisting conditions but not sure, it is the bladder that is really worrying me.

Have posted on other areas sorry if this is wrong but need help from several angles, newbie I'm afraid

Any ideas would really be appreciated.

 
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Old 06-09-2008, 10:24 PM   #2
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Re: Pain due to endometriosis, back, Irritable bowel and bladder help

I hope you can get on top of the pain. I know how it gets me down, especially when I can't sleep. Wish I had some advise for you, it sounds like you are really suffering.
Please do see your doctor. He may be able to refer you to a pain management specialist. I see a muscular skeletal specialist, who is a GP so I didn't need a referral. But it has taken me quite a while to find the right doctor for me.
He has started me on a Durogesic patch (fentanyl) which lasts 3 days and come in a variety of strengths that can be increased quite a lot to suit, and may be good for someone in your situation. I certainly feel that slow release medication along with some break through meds is working for me.
Allan
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25-Nov-2010: ALIF fusion L5-S1. 9 years of Chronic lower back pain. Nearly 18 months of pain across my upper pelvis, through my butt and down my left leg into my foot. Sciatica relieved by surgery.

 
Old 06-09-2008, 10:37 PM   #3
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Re: Pain due to endometriosis, back, Irritable bowel and bladder help

Hi as a past fellow sufferer of severe endometrosis I had to respond. You can end up with endo in the bladder causing a blockage. I would make an appt with urologist as soon as possible so they may scope you to determine if this is the case. You can also develop adhesions on the bladder and bowel and they can adhere to your abdominal activity causing massive pain.

My heart feels for you - praise god after my hysterectomy and an additional clean up surgery - I have been endo pain free since 1992.

Please keep us posted and I pray you feel better soon. (((Hugs)))

 
Old 06-09-2008, 11:45 PM   #4
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Re: Pain due to endometriosis, back, Irritable bowel and bladder help

Depr-Provera

Taking the pill continualy (rather than 3 weeks on, then 1 week of sugar pills)

Diclofenac 75mg SR twice a day

Increase the morphine to 100mg twice a day, or change to Oxycontin

Add chlorpromazine (largactil) to your morphine

Last edited by aussiejono; 06-09-2008 at 11:49 PM.

 
Old 06-10-2008, 07:37 AM   #5
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Re: Pain due to endometriosis, back, Irritable bowel and bladder help

Hello Scraggy,

I am so sorry for your pain.

I like you and Pepper, have been an Endometriosis sufferer in the past. I have since had a Hysterectomy as a result. Since the Hysterectomy the Endo pain has gone away.

The pain from the Endo. was really bad at times. During the Problems with the Endo, I also had issues with my Bladder. I would go t the bathroom about 30 times a day. It was embarrassing at work and I would rotate to different bathrooms because of my embarrasment.

The pain was tough and hard to hide from people because some days I just could not stand perfectly upright. I would be doubled over with the pain.

I also in the past have had some issues with my colon and have been hosptalized 2 times for it. The colon problems have been excruciatingly painful. This issue is more acute and comes and and sometimes resolves on its own. Sometimes it does not and I need treatment.

The my Gyno. did a exploratory surgery to see what was going on inside of my uterus and ovaries etc. The procedure looked at the inside and outside. Before and after the procedure I always had pain in my ovaries.

The procedure showed that I had severe Endo and cysts and a fybroid tumor on my ovaries.
Because of my age they did not want to do a Hysterectomy. (30)

I suffered in pain for a few years until it was to much. During this time I had went to the Urologist to find out why I went to the bathroom all the time. They looked at the inside of my bladder and found nothing wrong other than my bladder was slightly smaller than most women.

Eventually I was put on the Depro Prevara shot, to minimize the pain and discomfort from my periods, which was so bad I would stay in bed for the duration. When taking the depro shot your periods are supposed to be non existent. This was not the case for me. For 11 months of Depro I still had them almost constantly. Eventually I was taken off and they gave me nothing which just made the endo unbearable. I was in sooooo much pain. I had to wait 3 months for a hysterecttomy.

I am telling you all of this because I never stopped searching for the answer for the pain. I would not take NO for an answer from the docs that said "we dont see anything wrong." I kept searching and finally had enough testing to figure out the problems.

After the Hysterectomy, my Gyno. told me that the Endo was all over. It had attached to my bladder and my bowels. One ovay was riddled with Endo and cysts and the fybroid tumor. The other ovary was normal and left during the Hysterectomy.
I have no more pelvic pain. It has been gone since the hysterectomy. I still have some problems with my colon and bowels but it is no where near as painful on a daily basis as the Endo. Since the hysterectomy I no longer go to the bathroom 30 times a day. Thank God for that!

Scraggy Please keep searching for someone to listen to you about the pain and someone to treat the issues and the pain.

I share this experience so you will see that I was persistant about finding the source of the problem and then taking care of it.

I hope you will have some relief soon.

PS
I hope that the sharing of this has not offended anyone. I want to let others know that there are answers to some of these things and that your not alone....someone else has also experienced this.

Chrissy

 
Old 06-11-2008, 07:47 AM   #6
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Re: Pain due to endometriosis, back, Irritable bowel and bladder help

Can't do depro provera, tried put loads of weight on. Diclofenac was on before docs say ibruprofen 400 mg better.
Think docs may object to me doubling + morphine 40mg at moment, keeping pain diary so they can review, used to be on oxycontin whats the difference?
Not heard of chlorpromazine what pain group is it or is it similar to amitripyline?
Thanks for the advice

 
Old 06-11-2008, 07:53 AM   #7
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Re: Pain due to endometriosis, back, Irritable bowel and bladder help

Chrissy,

Thanks for sharing your experiences with me, I used to think I was alone in the pain I was going through and are beginning to realise that there are people out there a lot worse off than me. I've never had to go to the loo that many times, I think my tops is 20. At minute battling with whether to catheterise or not at much more comfortable if do, docs now think have uti back again severe. I'm getting shares in antibiotics LOL
Going to see Professor re endo on 24/6 instead of just local gynae to see if he will remove endo at same time as hysterectomy as peresnt gynae won't and every1 saying bad idea not 2.
Bowel pain is in another world at the minute. Can't eat so on fortijuices as doubled up whenever eat anything. Docs suggest more morphine!!
Really appreciate you taking the time to type all that out and going through some painful memories. Take care and hope u never get endo back and other symptoms calm down with time.
Elaine

 
Old 06-11-2008, 04:01 PM   #8
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Re: Pain due to endometriosis, back, Irritable bowel and bladder help

Chlorpromazine is a tranquiliser, it has no pain releiving effect of its own, but if taken with morphine etc, it greatly increases the pain releiving effect.

It also helps with any nausea they might cause, and helps releive the anxietya ssociated with pain.

It may well be worth a try

 
Old 06-12-2008, 09:33 AM   #9
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Re: Pain due to endometriosis, back, Irritable bowel and bladder help

Thanks,

Will look into it and suggest to my docs.

 
Old 06-12-2008, 02:13 PM   #10
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Re: Pain due to endometriosis, back, Irritable bowel and bladder help

Also, have you tried Danocrine/Danasole?

This drug blocks the hormonal process that cuses flares of endo...far better to stop the pain at cause than try and cover it with a pain killer.

 
Old 06-12-2008, 03:15 PM   #11
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Re: Pain due to endometriosis, back, Irritable bowel and bladder help

Scraggy, I had great success with Lupron; however, the danocrine caused me alot of serious mood swings and my boyfriend at that time almost did not live thru them.

 
Old 06-12-2008, 03:52 PM   #12
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Re: Pain due to endometriosis, back, Irritable bowel and bladder help

Other thought was, can you just take "the pill" continualy, ommitting the week of sugar pills, so that mensturation doesnt occur?

 
Old 06-13-2008, 07:52 AM   #13
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Re: Pain due to endometriosis, back, Irritable bowel and bladder help

Hey Scraggy,
No problem on the sharring. I wanted you to know that your not alone.

I actually found a cool web site much like this one that was taylored to women who were going through cancer and hysterectomies etc. It really helped me so much. Same as this board does. In fact I think they have a section on here that pertains to some of what your experiencing.

When I had the first female surgery it was more of an exploratory thing. It is called a Laproscopy hysterscopy (SP) What they did was went in and looked at the inside of the uterus and the outside. This is when they forund the Endo all over inside. The surgery was painful and the pelvic and lower abdomen were sore for many days.

Did you say they if they wanted to treat the Endo with any surgery? When it finally was to much to deal with pain wise, I went bac to my Gyno and we discussed a partial hysterectomy. I opted to go this route as I was 35 years old and not married and I figured I would more than likely not be getting married in the near future. I was right on that end. I am now 38 and not married and would have been nearng the end of the time frame I would have wanted to have children.

To me the pain was really awful. OK TMI here but the pain and heavy continual menstrual cycle that never ended for 3 months was enough. I no longer could stand it. This is what it was like for three months while waiting for the hysterectomy. Like you I could have taken up stock investments in femanine products...lol
I had to wait because I was having a workers comp injury that was being treated at the same time as going through all the female issues. I had just had surgery for the second time in June 2005 on my Wrist and because I had been having some steroid injections for that, the Gyno felt we should wait to do the hysterectomy.
While waiting the Gyno tried to put me on hormones to see if it would stop the bleeding which gave little hep for the bad pain and continual period I had. I was tested for anemia becasue I was very weak and loosing a lot of blood. Very sick and very painful time. Dealing with the arm injury and the female stuff was really tough, but I made it through all of it.

I have to say that once the hysterectomy and the Endo diseased ovary and as much of the Endo on various other parts of me such as the bladder,and some of my bowels, were removed I have been pain free in that area since.

As for the bowel issues, my Gastro doc has ruled out haveing IBS. He thinks I just have chronic constipation. This is pretty well true even when not on pain medication. So you can imagine the discomfort etc. that is added with having to take the Pain meds.

When I was really yound like 10. I was hospitalilized for a week or so because of problem with the illium of my intestines. I was very sick.

Since then I have always had some degree of intestinal issues.

I was hospitalized again in 2005 because of severe abdominal pain and cramping and bloody diarreha.This was really acute intense pain. They found the cause to be from a section of my colon that had stopped circulating. I rather big section like a foot or so. Thank God that it did not get bad enough for the doc to have a need to remove it.

So the end result is that every time I get really bad abdomianl pain which is at least once a month, I become fearful of what might happen. The Gastro said never to get constipated and I do my best to make sure that it does not happen, but because of my pain issues I have no choice but to take the meds which just exasperate that issue.

I know all you people reading this are going...OK to much info.

I understand this is an issue that most do not like to discuss. But, although it is embarrasing. It is a fact of life for some of us and it is very very very painful for me. As I said once before I share so that others know they are not alone.

Scraggy, what are they doing for you besides just giving you the pain meds. Do they have an outlined plan or course of action for your treatment for both the Endo and the bowel issues? Have you ever been able to revieve a secon opinion ablout anything?

I will send out some prayers for you/.... I hopw you get to feeling better soon. I know and inderstand completely how this affects you life. Try to stay hopeful.
Hang in there
Chrissy

Last edited by skych; 06-13-2008 at 07:58 AM.

 
Old 06-13-2008, 10:30 AM   #14
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Re: Pain due to endometriosis, back, Irritable bowel and bladder help

I was also thinking I should mention the doctor who finally put all of my problems together was a reproductive endocrinologist. I had a rare form of endo - normally the endo looks like grape clusters - I had that to but I also had clear endo custers that looked like they had a dash of black pepper on them. Anyway, you might consider this type of doctor because they are very familiar with the different types of endo.

 
Old 06-15-2008, 03:54 AM   #15
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Wink Re: Pain due to endometriosis, back, Irritable bowel and bladder help

Hi Dr Pepper, Scared of the side effects of Danasole, not got on with the pill, still in lots of pain whatever I tried. Never even heard of a reproductive endocrinologist. See what the specialist on 24 says and take it from there. He's the best we've got in the area.
Thanks for all the ideas though, what does a endocrinologist do (apart from specialise in endo!)?

 
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