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Discussion Starter · #1 ·
hi, this is just basically a post to see if there is anyone else on the planet suffering from the same symptoms as myself - it feels like i'm all alone! i've had incredibly bad stomach pains on and off for about ten years now, since i was about 18. initially the pain was in my lower abdomen and i have had several laparoscopies which found some, but not much, endometriosis. however, my symptoms have never really fitted in with endo totally - over the years my pain has become less and less linked to my menstrual cycle, and has spread to further up my tummy - now it feels like the pain is worse between my ribcage and bellybutton and is less bad down around my womb! i tried hormone treatment for endo and had no success, but when i was pregnant and bombarded with natural hormones my symptoms did reduce significantly.regarding ibs, i have no other symptoms except this awful stomach pain, roughly one night a week. it lasts for hours and leaves me feeling unable to walk or even lie still on the bed. is it possible to have ibs with no bloating, wind, constipation or diahorrea? the pain doesn't seem to be lined to anything i eat, yet is definitely too high up to be gynaecological.fortunately, my doctor is willing to prescribe codeine to relieve the pain irrespective of its origin, but i'd rather find a reason for it being there in the first place... has anyone else experienced similar things, or know of anyone else in this weird limbo between ibs and endo? or are there any other possible causes for this kind of pain? thanks for your time, and i hope you all feel ok today, tracy xx
 

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Tracey, No, you are not alone at all. However, you might just be one of the few who have put it together.IBS and Endometriosis do go together like peaches and cream.I just had my first consult with a Reproductive Endocrinologist.It was a very enlightening meeting and we are going to target some therapies and hopefully things will get better.According to the endocrinologist 95% of women who have endo and a few other specifics in the whole pelvic pain and body weirdness category have IBS.It's intereting and frustrating all at the same time.I'll write more later.I have to go now, but you are not alone.Kamie
 

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Nope, you are definitely not alone. I started out with IBS with cramping and diarrhea that would leave me physically and emotionally exhausted (still does, but not as often as in the past), then I was finally diagnosed with endometriosis after suffering with crippling pelvic pain that not only incapacitated me during my period, but lasted all month long, and I had surgery, hormone treatments, etc., etc. I have also added migraines, and vulvar vestibulitis to the mix. Don't think you are alone in your pain. I have been in contact with dozens and dozens of women with similar histories. JR
 

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Discussion Starter · #5 ·
thanks! just knowing that its not just me does help! on a positive note, the doc seems to be onto something that's helped a bit. in the past i was prescribed colofac as a painkiller to take just when i had stomach ache and it did no good at all, but now my doctor has prescribed it 3 times a day every day, and although i still get pain its only at about 10% of what i'm used to
i guess it doesn't really matter whether it is ibs or endo that causes the pain, as long as we find something to make it go away...thanks again, txxx
 

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So GLAD I saw this post!! Your not alone! I have endo and IBS too! I was scoped for the endo in 95. Since then the docs never wanted to go back in. I take the pill now each month and skip the placebo's. So I don't get my period. My PCP told me to do this. She said it with help with the Endo, IBS and migraines that I also occasionally get. Guess what? I still have BIG TIME IBS! My IBS symptoms are WORSE then ever! I don't get period pain anymore cause I have no period. She said no period would put the ENDO in remission. I am convined that the endo is wrapped around my bowles. Cause when I had the scope my GYN said that the adhesions where actually on my bowels....I moved to VA last July. I was reffered to a new GYN in the spring for pain on my left side. I was conviced it was endo, I even told him about my bowels. He said I was constipated and told me to take a stool softner. I tried to tell him I have D all the time, but he didn't listen! I am seeing a new GI on Tuesday I hope that they will do some sort of testing on me. I have been getting REALLY bad abdominal cramping, pain under my rib cage on the right, and pain in the middle of my breast bone. Plus D at least 2-3 times a week! Thanks for this post!!
 

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Hi Guys. After reading about all the conections with IBS and Endo I had some questions. First of all, is it possible to detect Endo via a pelvic ultrasound? U know they do the whole outside thing and then they have u stick the very very long rod thing up u. Well I'm just wondering b/c they have told me no endo but I am still not buying it. I have very very painful periods whne I am not on the pill (i have to tkae narcotics for the pain)and I throw up a lot. Along with D, even though I am IBS-c. Then, I find out I have a tipped uterus, which is linked to endo. And the weirdest thign was aafter my ultrasound I had this dischsrge coming out of me... it was pretty much black. Meaning, very old uterine lining I'm guessing. They must have knocked it loose with the ultrasound. It's jsut weird. I dunno. Then i had all these IBS symptoms. I'm diganosed IBS, dysmenorrhea, inverted uterus. Waht do u guys think? I am 21 yrs old. Diagnosed IBS-c 8 mos, dysmenorrhea for 7 yrs. Any input is welcomed. Thanx. -Julie
 

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Julie,Don't doubt what you feel to be right. A majority of us who were diagnosed with Endo have been told it was other things first. An ultrasound doesn't definitely or accurately detect endo. I had two last spring and neither detected it. I had a laproscopy (definitive way to diagnosed Endo) in Juna and they found a mess of adhesions conecting my bowels to my uterus, scar tissue, and endo spots. Not to get gross but my periods would always end with this gross dark brown sludge for three days... seems to be somewhat common for some with endo... wishing you better health -Z
 

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The scope is a very easy procedure. They make an incision by your belly button and one down low! The fill your belly with air to expand it. They put the scope in and lazer the endo away.....they new I had it cause it made my appendix inflame causeing an appendectamy. But, prior to knowing I had REALLY bad periods......good luck
 

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Definitely not alone tracy, but some of us just don't frequent this board as often as the other boards here - or may just take a break for awhile. My story is on "Living with IBS": http://www.ibsgroup.org/cgi-local/ubbcgi/u...c;f=17;t=000047 It may or may not be helpful to you.I hope that you will find a solution that will make you more comfortable tracy. I know how miserable and frustrating all this can be.UnM
 

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There are many many female problems that can not be seen by either the internal or external sonograms. Not x rays either, and if one is just lucky MAYBE the off chance things might be seen via the CT scan or MRI but don't rely on it if it shows nothing.Also the scrapings and blood tests can often be deceptive.I had everything except for a hormone panelk run and the doctors insisted that there was nothing wrond with me.I had adenomyosis,endometriosis ovarian cysts, a fibroid tumor and massive dense adhesions glueing my internal organs to gether.It was a night mare.Oush for a laposcopic procedure so the doctor can go inside and take a look.Also, find a doctor who has lots of expereinces recognizing the internal signs of endo.Endo comes in various shapes sizeds and colors including the clear variety.Best wishes for a quick answer,Kamie
 

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tracy bI've been using colofac on and off for years. It was always the drug of choice with GP's here, and presumably also in the UK. Nobody I know has found it very useful, although it's OK for mild IBS spasms.Have you used buscopan? I have had to take it when the pain has been very severe. It takes a couple of hours to get working, but it definitely eases the pain. It's prescription only, whereas colofac is now available over the counter.The alternative might be peppermint oil - either as a tablet or in capsule form as Colpermin. You should be able to get peppermint oil in your local Boots. I found it helped with the night-time pain (usually after eating fibre, which causes problems for me). I suffered from both endo and IBS for many years. I got relief from both when I had a hysterectomy, but stress brought the IBS back in recent years.I hope you can get some help.
 

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tracy,I didn't post only because I have talked about it so many other times in the past. You may want to do a search for "endometriosis" on this board. There are several of us here with the problem.
 

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Discussion Starter · #15 ·
thanks everyone - it's great to know that i'm not alone, although of course also sad to hear that there are so many people suffering out there
as for me, after my positive post about the success i was having with colofac, i've now found that i was being a bit premature - i think i was just having a good week, because now the pain is as regular as ever. ho hum. yes, i think i have been prescribed buscopan in the past, but didn't have much sucess. regarding the possibility of having endo around the bowel, i am wondering whether maybe i dont have ibs at all, but maybe i have endo which has travelled up to around my gut area? it would explain why the pain has progressivly got further away from my womb over the years, and why i have no other symptoms of ibs other than the stomach ache. i'm not really sure what can be done to look for endo that high up though - the doctor said the laparoscopy can only look for cysts lower down, and yet you do hear about people having 'travelling endo', so how did THEIR doctors find it??this is such a great board. thankyou all so much for your help. it really does help to know that you're all out there. txxx
 

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Well, my Dr. SUSPECTS I have endo because of all my symptoms (IBS, periods from HELL, pelvic pain) but last Dec. he attempted to do a laparoscopy to diagnose it and couldn't get through the adhesions. He said my uterus is completely glued to the wall of my abdomen and he couldn't get through to see if I have any endo. I have been dealing with this for 10 years now. He wants to put me on 7 months of Lupron to stop the endo growth (if that's even what it is) but I'm thinking of just opting for a hysterectomy. If they do a hysterectomy, can they also clean up the adhesions I have in there? Won't more surgeries just create more adhesions???
 

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Yes, they can clean up the adhesions. I am currently recovering from that surgery. And they could do it while they gave you a hysterectomy. If you are afraid of a hysterectomy, try to relax. I felt better 3 days after my hysterectomy than I did the day before. I was only 23, but had sufffered for 10 years due to adenomyosis. And yes, with more surgery you have the same risk of redeveloping more adhesions. Some of us are just lucky that way.
 
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