endometriosis vs. IBS
#230813 - 12/11/05 06:06 PM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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I was just "officially" diagnosed with endometriosis -- I had a laparoscopy Thursday and had a ton of endo removed.
Question is ... how do I figure out if I really do have IBS as well? Or will it end up being pretty self-explanatory? I realize it is very possible to have both endo AND IBS, in which case, yes, I would totally have to be so thankful for having TWO sucky chronic conditions with no cure ... OK, yeah, I know, it could be worse, sorry, tiny bit of pity party there.
Anyway, so, the gynecologist said I didn't have endo on my bowels, but did say it was possible all the inflammation and whatnot was causing the GI problems. My appendix was removed because it was nearly completely covered in scar tissue from all of the endo, and isn't the appendix near the colon? (OK, sorry, I never passed Basic Biology 101.) So maybe that is a possible link? I do know that the extremely hideous agonizing painful cramping I was having because of the endo was causing really bad bouts of D.
Just not sure if I continue to have GI symptoms if it really is IBS or if it's resulting from endo.  I've never really been a textbook case of IBS, and so far my symptoms have been totally degenerative -- after over a year of being on Heather's diet, I was down to eating bread and water and taking double my allotted dosage of anti-spasmodics to try to get through the day (don't tell my doctor).
Obviously it's too early to tell anything, especially since I am still in mend mode from surgery, but just wondering what everyone thought. I figured maybe other people had passed Basic Biology 101 and would have some more intelligent thoughts. 
I do have ten days off over the holidays and thought I'd try reintroducing some foods then, but after all this time on the boards the thought of dairy or red meat is more scary than the thought of having to appear publicly in a bathing suit. Plus, what if I do have IBS, but it was super-aggravated by the endo, so I start to eat other foods, and I'm OK at first, but then after a couple weeks I have a super horrible attack?
Anyway, I just want to KNOW.  I don't even care about the diet part. Yeah, I could stay on it to be safe, but it still wouldn't answer any questions.
Thoughts???
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Thought no.1...go check out www.butyoudontlooksick.com. It's for people with chronic invisible illnesses (yes, you count!  ) and there are quite a few girls with endo (an endo forum is on the to-do list for Christine I think). If you post in the New Members bit first you'll get some idea of who has endo!
Thought no.2...having a period really &^%$s my tum up, so I can only imagine what endo does. The diet is based on making food easier to digest so it might be a good basis to stick to whatever. How about reintroducing foods according to the diet principles and see how you do. And then reintroducing the occasional bit of dairy or meat later.
Thought no.3....yep, the appendix is near the colon...as are all the girly bits.
Hope that helps! 
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I've seen you mention that site before. I should really go check it out. Actually, I guess I should go find an endo board somewhere! Even if I don't have IBS, though, how could I leave here? You guys are so awesome! Maybe Heather needs to have an endo board. Um, except then there will only be Nelly, Kelly, and me. Hey, that sounds like a Sesame Street Segment. "Whis one of these is not like the other? Nelly! ...Kelly! ...or Jen."
OK, I think I had better go sleep for awhile longer.
Anyway, I guess what I'm really wondering is if I do have problems with D still if it's IBS or if it's due to endo. Probably no way to tell, huh? Ugh. Maybe I'll just say I have it anyway so I have an excuse to hang around.
Thanks Linz.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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I have both!
#230874 - 12/12/05 07:12 AM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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I have endo, IBS-D, fibromyalgia, RLS, migraines, chronic kidney pain, a tilted uterus, scoliosis, degenerative discs, mast cell disease, mastocytosis, gastritis, and premature arthritis. (WHEW!  ) I may also have Lyme disease, considering I've been exposed to the same factors my BF and dog have, and they both have it. )
But all of these ailments have different side effects, and the endo and IBS are easy to tell apart. A big way to know is that I have stomach pain even when I don't have my period, while the endo is localized to the week my period happens.
But I fixed the endo by stopping my periods with depo provera-- my last endo attack was my last period, August '99. Yeaaaaa!!
Do you have D or C? IBS is a digestive disorder so you should know how to make your stomach go out either by eating the wrong food or by putting too much pressure on your stomach. You won't be able to do the same with endo.
Good luck!
~nelly~
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I miss my Depo! I HATE periods, they make me feel like utter garbage.
Depo is so fab...ah I do miss it.
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Oh YES
#230943 - 12/12/05 10:04 AM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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I LOVE DEPO. I've gotten back 60 to 70 "good" days a year just by stopping my periods, yeaaa! Are you trying for a baby, Linz? Or did you just skip a shot?
~nelly~
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Yikes! That's quite a list.
Unfortunately, my endo isn't as clear-cut as just having pain during my period. My pain is all of the time. Sometimes it gets so bad I wish I were dead. Sometimes it's almost bearable. But, there's never been a discernible correlation to my period. This is one reason why I sort of thought I didn't really have endo. I've since done a lot of reading -- official sites, cheesy doctor's brochures, various message boards -- and this does definitely happen with endo. I wish I'd thought to do some more research on it beforehand rather than just reading the symptom list on WebMD and thinking, nah, this doesn't really sound like me.
And, see, if my bowels are disrupted because of endo problems -- nearly everything is going to bother me. And the hard-to-digest stuff will REALLY aggravate it. I mean, in one sense, D is D. So how do you tell what's really causing your unhappy stomach? Did the peanut butter toast just kill you because you have IBS and you tried eating too much PB, or is it because the endo has inflamed everything so much that everything is going to hurt? I only know that some of my D is being caused by endo because of the vicious cramping and bleeding I was getting. But since my IBS symptoms have been degenerative (which IBS really shouldn't be, especially when you're eating nothing but bread and Imodium), that's why I'm wondering if it's endo-caused.
Wishful thinking, maybe. As I heal from the surgery hopefully I will know more. I'm still in a lot of pain, but digestive-wise my stomach has really behaved. I've been sort of C (from the painkillers I imagine) and my bowel movements have been pretty painful, but no cramps/D. I guess I will cross my fingers and hope it stays that way. Except for the pain part. This is also normal post-surgery so it should get better.
I think you said before you've never had a laparoscopy, and this is the only way they can find endo (though I think if there is a ton of scarring they might be able to see patches on x-rays). With a colonoscopy they can't see endo on the bowels. I know that your IBS is really bad -- don't you ever wonder if you've got endo on your bowels or elsewhere that is aggravating your IBS?
That is so incredible you've gone so long without an endo attack. I hope it stays that way!!
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Re: Oh YES
#230993 - 12/12/05 11:50 AM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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Not yet, but we might be soon and my docs were worried about the effects of long-term Depo use, so I switched to Implanon. Unfortunately the lower levels of hormones have allowed a slight cycle to start again with light (but oh so horrible) periods.  Waaah. When I get the Implanon out, I'd better get pg real quick! Im struggling enough with light periods.
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Hi, Depo Girls! I'm sorry for butting in but I must know...
I wanted to go off of the pill because it irritates my reflux and I called my gyno and told her I wanted to try Depo. Yet another doctor to tell me "NO". I must sound like a total demanding BI!CH on the phone because every single doctor tells me NO, for one reason or another.
She said she wanted me to stay on the oral contraceptive, because depo causes bone density loss and I would gain weight and lose my hair. What's up with that?? Do you girls have problems with this??? I don't care if I gain weight but I don't really want to lose my hair.
Please let me know if there are any side effects I should worry about. I really want to come off of this pill.
Thanks!!
Michelle
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IBS-D. Hiatal Hernia, GERD
Unstable
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Lose hair? I wish! Only kidding, but I do have too much hair.
I did gain weight, but then I had alot on so I can't blame it entirely on the Depo. As for the bone density, it's just a theoretical risk (as is reduced fertility) with long-term usage. I was on it for 6 years. 5 years is typically "allowed". I switched off it as I def. want kids in the next 5 years and also b/c I have osteoporosis in my family.
I think Nelly doesn't want kids and gets her bone density checked to make sure it's okay. Might be wrong....
But really Depo is GREAT!
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Hey Michelle ... I was on depo once upon a time. I tried it for six months and I HATED IT!!! I bled all the time (all six months!), I gained weight, and I broke out so much that my forehead was always covered in a ton of zits. (I never have zits normally so this was freaky and horrible.) On the bright side, I don't remember losing any hair.
Try the patch instead! I loved it, but had to go back on the pill because I got migraines on the patch change day. There is also the new NuvaRing. I don't know much about it, other than that it's a vaginal ring that gets put in once a month. But, those are two non-oral methods you can ask about.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Re: I have both!
#231002 - 12/12/05 12:06 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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All the doctors who've agreed I have endo did so from examining the swelling around my uterus and sonograms (the painful internal and the external kind), and the fact that I do not bleed normal "blood" but rather my periods are very light and so extremely painful it's not abnormal that I'll be bedridden 5-6 days a month. Once I stopped my periods, I stopped the endo.
Endo occurs in my family, so it was pretty obvious from the get-go when I first got my period and first endo attack when I was 14; my mother has it, so did my aunt, my grandmother and my great-grandmother. I am the only one who was not operated on because of my endo. I am avoiding any surgeries now, because I know it takes me a looong time to recover from them!
I'm so happy I can chemically stop my periods. No periods, no problem.
~nelly~
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Depo!
#231003 - 12/12/05 12:09 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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I gained 10 pounds in 6 years. Not a significant weight gain if you ask me! My hair has never been fuller, and my bones are fine. I take calcium, which is recommended for women anyway. If they're scared about bone density they might request you take 3 calcium +D pills a day (About 1800 mg).
If your doc is giving you grief, it might be easier to go to planned parenthood instead. They're so much nicer there, and they take insurance.
~nelly~
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No signs of osteoporisis here! Plus I get blood work every 6 mos to check my iron and calcium levels, glucose plus renal and liver function.
As with all my other tests, I'm "normal!"
~nelly~
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I will make an appt and go in and talk to the Gyno about it, I guess. See why she's sooo against it.
Me and the hubby DO WANT KIDS, though. I was reading on the internet that a lot of women that came off the depo couldn't get pregnant. But that wasn't the case with every woman, though. Just most of them.
I hope ya'll won't have a problem getting prego if you ever try!!.
Michelle
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IBS-D. Hiatal Hernia, GERD
Unstable
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OH, I didn't know that. Planned parenthood?? I will look into that.
Thanks Nelly!
Michelle
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IBS-D. Hiatal Hernia, GERD
Unstable
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Been on it for almost two years, no hair loss, no real gained weight (losing too much lately due to my thyroid meds), and no periods setting off nasty IBS attacks!
Haven't had my bones tested, but take lots of calcium+D (1400 mg/day) and my blood calcium levels and such are fine per my fibro doc's tests!
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Melissa
Friendship is thicker than blood. ~Rent
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I would LOVE not to have a cycle!! My cycle weeks are HORRIBLE on my IBS. They are usually very bad.....I would do anything to get rid of these cycles!!
That's awesome that it's working for you!
Michelle
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IBS-D. Hiatal Hernia, GERD
Unstable
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Oh, it says on the Depo paperwork that it will usually take 6 months to get your hormones back to normal before the usual waiting time to get pg so it typically takes up to a year. But that's all normal and it's supposed to have no after effects once the hormones are out of your system...and no periods is a great trade off for dealing with the higher levels of hormones once you go off it.
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Yea, I just took my pill today and realized that next week is my cycle!! Nooooo!!!!!!! That's why I had that bad attack, today. My attacks start the week before my cycle because that's when I get the most cramps......
This sucks!! I don't want to have a cycle anymore!
I might push for it. She said that if I insisted on getting it she wanted to do a bone density test. But, that's fine. It's just a blood test, right??
Michelle
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IBS-D. Hiatal Hernia, GERD
Unstable
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Most women get pregnant within a year after stopping the shot. That's the stat most quoted in my doctor's office. I'd def give PP a shot, as they're very no-nonsense and friendly.
Also the thing I like is there's none of those walls of pictures, the ones containing snapshots of other people's kids-- I just find that obnoxious and offensive for those of us going in to a GYN office for birth control!
Plus, it's cheep. I pay $48 for my depo shot, and that's only once every 3 months!
~nelly~
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A bone density test is a scan, i think?
~nelly~
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I wasn't disputing your diagnosis -- I was just curious if you'd ever thought that your endo was making the IBS worse. But, I guess if you don't know you'll get any benefit from it, I can see why you'd want to avoid surgery if you know you have a long recovery time.
Personally, I really wish I would have read up more on endo and laparoscopy before I did it. I did read up on the lap, of course, but the stuff I read about it and the recovery were more based on procedures where nothing was really done. I wish my subconscious hadn't been so sure they wouldn't find anything!!! I am still glad I did it, though. At least right now. We'll see in another couple weeks how glad I still am.
Hopefully Depo keeps working for you forever!!
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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I just wanted to add my voice to the positive views of Depo.
I've been on it almost 7 years. I guess I have gained a few pounds. (But that was actually a good thing for me. I'd like to gain yet a few more.) And no, I have not lost any hair.
Yes, I had a lot of (sometimes heavy) irregular bleeding in the first year. But after that, it was smooth sailing with no periods.
I also get my Depo from Planned Parenthood. They're very convenient for me -- they have an office just 3 blocks from where I work, which makes it easy to get the shots. (For a few months, my company's office was actually in the same building, which was a little too close for comfort.  )
Even Planned Parenthood is concerned about bones, though. Last time I was up to renew my yearly prescription, they wanted me to either switch methods or get a bone scan before they would give me the next shot.
I didn't get the bone scan -- I figured they were probably right that my bones might be better off with a different method. So, a couple months ago, when I was due for my shot, I tried switching to NuvaRing. (With NuvaRing, like the patch and some of the pills, you can also keep yourself from having a period by skipping the week off, which is definitely what I was planning to do.)
Unfortunately, while I was on it for about 1.5 months, my IBS got worse. Now, I have always had my ups-and-downs with the IBS, so obviously the two may not be related in any way. But the possibility was enough to make me want to go back to Depo, and was enough that Planned Parenthood went ahead and let me go back without a bone scan. (Also, I didn't like the ring, because it was slipping for me. It didn't fall out or anything... I'd just start feeling it at random times and need to go push it back up a bit. Which wasn't an absolute deal-breaker, but was pretty annoying.)
Anyhow, even though I take my calcium supplement, I am a bit worried about my bones. (I guess I should get that bone scan after all.) But I do truly love the Depo outside of that.
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I know I don't post often, but I just had to throw my two cents into this Depo-lovefest. I'm over one hundred percent positive that Depo exacerbated (and possibly even caused) my IBS to such a horrendous extent that I've never truly recovered from it. It's been about nine years since I had that first fateful Depo shot. I only had three shots. I didn't get my period for almost two years. This was not the blessing I'd hoped for. Instead, I felt like I had the worst PMS I'd ever had in my life every single day during this entire time. Tender breasts, bloating, irritability, mysterious abdominal pains and serious weight gain (this was probably the most devastating aspect for me b/c I'd been the same size and weight for years and I was not eating more and was exercising the same amount). They touted Depot as being 99.9% effective. After my second shot, I became pregnant. On top of all the negative symptoms I was already experiencing, I then had to deal with nausea, fatigue and distended organs. I contacted every expert I could find and researched the potential effects of Depo on fetuses to no satisfactory avail. Granted this was a long time ago, so maybe there's a lot more research that's been done, now, but I know that back then nobody could give me any answers regarding Depo's long-term effects. I'm sure the stress and worry was also a contributor to the onset of my IBS. My body has never been the same since. I can trace my IBS symptoms back before the Depot, but they were pretty mild compared to what happened once I started that evil Depo. I'm all for advances in women's medicine and I know that Depo has been a godsend for many, but I just wanted to share my negative experiences with the hopes that if any of you go on Depo and have any negative stuff going on, you'll know right away that it might not be right for you and stop the shots. Of course, being that they're shots and already in your system, you may still experience negative, unwanted symptoms for quite some time. At any rate, if you do try it, I hope you have much better luck than I did.
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And 99.9% effective does mean that 0.1% of the people taking it don't find it effective! That's only 1 in 1000. But that's still better odds than alot of alternatives.
Sorry you had such a bad time!
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On the pill I bled every day of the month and got these splitting migraine headaches. I actually tried all the orthos and others, including the mini-pill, and it turnes out they all did me in! I can't take estrogen! How awful! But I know some people, like you it seems have the same problem with not being able to take progestrone.
I'd never take estrogen again!! My IBS was so bad, I had pain, cramps, endo plus with the bleeding all the time D all the time too! I was like, "hey, is that supposed ot be birth control? There's no way I'd let any penis touch me in THIS condition!" LOL!
What Linz said, there's no one solution that works for everyone! I'm so glad I found my solution, though!
~nelly~
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I get bad enough migraines as it is and they used to be even more of a problem. Now that was back in the days when I'd had the same docs for 17 years and they actually knew something about me!
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Hi Jen,
I`m currently having probs with my bowels (D), periods and pain when I have sex.I`m seeing two specialists and they are just elimating things at the mo. I just wanted to know how you are now and how you coped whilst you were waiting for answers. There is always a minimum of 4 months between my appointments and it just means I have loads of waiting. And its soooooo anyoing.
Anyway hope u can help and hope you are feeling better to how u felt when u wrote this.
Hugs
Joxx
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http://www.myspace.com/jo_elsmere
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Hi
I had endo, had it for years and years, I think forever as my periods from day one were absolutely debilitating and the pain unreal..I became addicted to codeine, as I lived on the stuff to manage the pain...enough was enough...I had a hysterectomy 2 1/2 years ago...hallalujah...they didnt want to do it as I was 36 at the time, but I had just had it...periods coming every two weekly, lasting at least 10 days at a time, crawling along the ground as my body wouldnt unbend itself because the pain keep me doubled over...anyway the ibs was at its absolute worst, losing lots of blood, heavy bleeding and huge bloodclots and chronic diarrohea, was enough to make me pass out on two occassions....anyway the hysterectomy halved the ibs symptoms...instead of 9 - 11 times a day, I can now claim fame to diarrohea averaging 3 - 5 times a day....yahoo!! anyway the hysterectomy was totally worth it, I highly recommend it, I kept my (polycystic) ovaries, so menopause will come when it is meant to....there definitely is a connection to this disease, I think endo possibly caused the ibs...everything was such a mess, my gyno...said my bowel was inflamed and distended quite severely, and she had to push it back down and hold it there, while they sewed me back together...
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