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Old 06-22-2008, 03:13 AM   #1
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Unhappy V Bad Pain in lower l abdomen groin area constant ideas please:-(

I've had virtual constant pain in varying degrees in my Lhs abdomen groin area. Gets worse after urinating and food. Not got UTI tested several times. Getting desperate for ideas of what it could be, do have endometriosis and IBS.
Please help

 
Old 06-26-2008, 09:47 AM   #2
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Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

I have endo and my pain radiates to my groin. It pulsates, takes me down to my knees pain. I also have bad lower back pain.

The also thought I had IBS...I did not. But they say IBS pain can also radiate to the groin area. Since it is after you eat...it might be the IBS.

Can you describe the pain??

 
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Old 06-27-2008, 06:50 AM   #3
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Smile Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

Pain does get worse as night wears on after eatting but don't know if I'm just tired or what. Seen endo specialist who has suggested keeping cathether in as eases pain somewhat and has referred me to a urologist to investigate further whilst he does a mri of abdomen, bladder and bowel to see where it is. Have had grade IV endo before and had it all removed on numerous occasions, full story is local hosp suggesting hysterectomy witout touching endo as it will be ok after hysterectomy??? Wasn't sure so saw endo specialist in Birmingham and he's suggested the plan of action described above.
Pain is a stabbing, intense pain there all the time when its present ,which can make me want to curl up in ball like endo does.
Didn't know endo could radiate around like you've described, have u had endo long. Hope you're ok 2day, really grateful for u responding. Would love 2 chat on here if u want.

 
Old 06-27-2008, 10:59 AM   #4
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Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

My pain is throbbing, stabbing almost black out pain. I was run thru about every test for about 2 yrs....BTW I am 37 yrs old. I had a lap done...showed little endo. The Dr at that time did not think endo was the cause of the pain. He did want me to try Lupron injections. It puts you in menopause so you do not have a period but you can only be on it for 6 months. I read up on it scared me to death I said ...nooooooooooooo. I will figure out what this is, some Dr has got to have a clue. Well, 20 Dr's later about $35k in diagnostic tests....nothing. I started to feel like a nut job.

So, I went begging to the Dr that did the lap...you have got to figure this out. He said Lupron, Lupron, Lupron. I caved.....pain free for 6 months He suggested a hyst total ovaries and everything since I did so well on Lupron. I am currently taking birth control pills off the Lupron and still pain free. If the pain returns I will consider a Hyst. Although not a cure.

Read up on endo, it is a sneaky little disease. My gyno thought I could have some in my groin area rare....you can get in your brain and lungs also.

Alot of women with endo have IBS and urinary problems I think it is CI or something. If you have any questions...ask away!

 
Old 06-27-2008, 11:23 AM   #5
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Unhappy Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

I'm on a different gnrh analogue, Zoladex. Do u need add back therapy, does it endanger your bone density like zoladex does. If u do and u are taking it u are having a small amount of oestrogen so it may be worth stopping taking it as it may b the add back that is the problem. I thought I was quite up on endo, with the society but have found that there are some drugs I didn't know about.
Be careful on the hysterectomy issue. I'm having that battle but it may not be the answer, if all the endo isn't removed it can come back also if u have endo in different areas to the womb there is a debate about the validity in just removing the womb. The ovaries obviously have to be removed as well but then its whether to have hrt.
I'm waiting 2 c whats found at mri and why I'm getting so much bladder pain. Getting scared as specialist said could remove bladder if necessary and link to bowel so go to the toilet down back passage! Hoping not going to b necessary.
Having catheter in all the time is a pain but not as much pain as I have without the catheter. was taking 80mg Morphine twice a day!
Do u have any endo specialists by u? just wondered if seeing specialist would b useful as Lupron isn't a long term treatment so u have the same issue as me as to what 2 do long term.
I am struggling with the issue of not being able to have kids but am just not able to be off treatment endo wise and back pain means always on opiates. No chance of carrying kids whilst taking morphine so I've got no chance, with or without the hysterectomy.
Knew some1 who had endo behind eyes so know it can move around. Its a scary disease and is not that well known in the UK but when u mention it some1 always know of some1 who has it.
Need a gr8 deal more publicity for every1 and training for docs overhere. Can be a bit hit and miss as some gynaes know a lot about the subject where as some definitely dont. Some I've spoken 2 I know more than they do!!
Am trying to find more about it but finding about the rarer cases is hard and I fall, like u into the extensive endo area.
Am really sorry u r having such a bad time, can they improve your pain management as its not just a case of putting u into psuedo menopause (and all that fun)need apinkillers for any breakthrough pain 2.
Sounds like we can trade info, presume u aren't in the uk.
Sorry posted such a lot, don't mean to rattle at u if u know all I've said, just trying to help!
My pain is def easier with the catheter but still causes me trouble. Not at all sure how to determine ibs or endo, any ideas?

 
Old 06-27-2008, 12:31 PM   #6
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Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

Interstitial cystitis is the word I was looking for! It is constant inflammation of the bladder. Have you ever heard of that?

No, you are not rambling. I understand when your in pain you just want answers or someone who can relate.

I am not in the UK....Iowa, far away. I have not seen an endo specialist, there are a few around here. I really found a gyno that I really like and she seems to have alot of knowledge with endo. I did not take add back with Lupron. You can only stay on it for 6 months otherwise there is a risk of bone loss. My body did wonderful in menopause, I lost weight, pain free, more energy, no migraines. My last injection was in May and now I am on Seasonale. I have not have my period since Jan 2008.

I do see a pain specialist and controlled some of my pain with steriod injections and narcotics. I used to take 6 oxycodone, 3 muscle relaxers, 2 naproxyn and a killer muscle relaxer at bedtime. Now I just manage with a few oxycodone. My pain is very managable right now.

As for the hyst, my hubby and I do not want children. I cannot imagine what you have to deal with. I know a hyst might not cure it. But I might have to risk that if the pain comes back full force.

Not sure how to determine what is the cause of your pain. The MRI might give you some in site. I have 3 MRI's, 2 CT scans, xrays and they never found a thing. So, I really hope they find the cause of your pain.

Look up info on Interstitial cystitis...see if you have the symptoms. Alot of women with endo deal with this also.

 
Old 06-28-2008, 08:19 AM   #7
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Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

Hi there Reyne,

Have heard of interstitial cystitis, diff to spell never mind anything else! Looked into it and is a definite possibility but won't find out any def answers until the urologist does a cystoscopy I would presume.
Pleased u have a gynae you are pleased with and your pain is more manageable now.
It is hard about the kids issue, I'm just starting counselling about it as I'm getting very tearful around them at the minute. Even seeing children on the tv can be too much sometimes.
Haven't heard of Seasonale but looking into that as well, probably got drugs in Iowa we've never heard of over here and visa versa.
Endo is really a nasty disease and needs a lot more publicity and funding in my opinion. I'm off my soap box now!
Just found out Seasonale is a birth control pill, hope you get some results with it, I couldn't find 1 to suit me.
Take care, will post soon

Last edited by Crimson609; 06-28-2008 at 08:21 AM. Reason: added info

 
Old 06-30-2008, 06:59 AM   #8
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Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

Please keep me posted on your progress and diagnosis. I hope you get some relief and answers!!!

 
Old 07-04-2008, 03:43 AM   #9
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Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

Hi There Reyne,

I've just found out that I've got my appt with the Urology Surgeon on 8/7.
Worried what he'll want to do and is going to say but I've got to get it sorted out so I'll bite the bullet so to speak and get on with it. Let u know what I find out.
Take care :-)

 
Old 07-08-2008, 06:46 AM   #10
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Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

Good Luck...keep me posted!!!

 
Old 07-09-2008, 01:25 AM   #11
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Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

Hi There,
Surgeon said yesterday that he would do a cystoscopy to check whether I have endo, inside my bladder but he's insisting I remove the catheter and measure all liquids, in and out. Plus try to avoid going to wee for at least 2 hours. Started doing that last night and it really hurts:-( He said it would take determined work to improve my bladder action and I was allowed to go back to an indwelling catheter for a couple of days when the pain got too much to endure! Sound fun donesn't it. He was really understanding but said this was in my best interests and wants me to see him next time with a lot of charts he can study re liquids in and out. Its the out bit I don't fancy!
Waiting ti see when the MRI is going to be carried out as need those results plus the cystoscopy results before they can operate.
Hope u r ok. Feeling a bit overwhelmed myself :-(
Take care

 
Old 07-09-2008, 02:58 AM   #12
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Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

Good grief, Scraggy, I bet if it was him, he wouldn't be trying all this at home, he'd be in the hospital, did you tell him you fell and hit your head and passed out? Jeesh, I feel for you, the pain must be terrible, I know when I had my trouble I had to go every twenty minutes or it was unbearable, Well not just unbearabe...I couldn't go at all in my case, had to bare down like really hard, broke eye vessels in both eyes! Looked like a rock base fish. The doc sounds like he knows what he is doing, but I can see why your overwhelmed with it all. Make sure you write down not only your output but how much on a scale of 1 to 10 the pain was each time, this way you can gage if it's getting worse or better, what time of day is worse, etc....Sounds like a long painful road ahead for you Elaine, I sure hope you don't pass out anymore.
I'm going to reply to your female post regarding the endo problem. Take care of your bladder, and I hope it doesn't get madder! I know it must seem like an awful hill to climb after all you've already gone thought. Huggs, Diana

 
Old 07-13-2008, 03:42 AM   #13
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Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

Hi, I do tend to agree that if it was him he wouldn't do it like this but we can't afford for me to be in hospital pte so its not an option. Am cracking the time wise element of going but the pain is getting worse. Do seem your idea about recording the pain as a good idea otherwise won't tell whether alternative medicine or bladder on its own are getting better.
Over to the other posts!
TC
Elaine

 
Old 07-13-2008, 06:38 AM   #14
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Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

Charting things helped keep me focused and it's always good to keep records of what is going on, especially to gage if things are better. Lot's of extra work but I always found it worth it. Diana

 
Old 07-13-2008, 01:03 PM   #15
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Unhappy Re: V Bad Pain in lower l abdomen groin area constant ideas please:-(

Hi,

Things gone downhill rapidly and I've had to put the catheter back in. On 80mg morphine and still not on top of the pain.
Really disappointed as thought I'd got it licked. Should have known really :-(

 
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