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Anyone Have Endometriosis?

1K views 34 replies 11 participants last post by  JenS 
#1 ·
In my continuing quest to find out what's making me feel so lousy, I've come across the info that endometriosis can cause "bowel irregularity," "bladder problems" and "irregular periods." Well, I have all of these but, then again, the descriptions are rather vague. What kind of bowel irregularity--C, D, both? What kind of bladder problems--burning, urgency, spasms, infections? And irregular periods as in heavy, sparse, frequent, infrequent, or what? Does it get worse--or start to disappear-- during perimenopause? Also, I wonder if heredity is a factor. My mother, grandmother, great grandmother and aunt all had severe endo and had hysterectomies in their 30s. Only my mother is still alive, and her recollection consists of, "Well, I had a lot of cramps and bleeding." (It was 40 years ago.) Is there a test for endo besides a laproscopy? I always thought I'd escaped the family curse, but now I'm beginning to wonder.
 
#3 ·
Hi Zig we meet again! I had a hysterectomy due to endo. I had bladder infections, one after another. Much cramping and bleeding 20 days out of 30
I had 4 DNCs before the surgery. They didn't help. I went through 2 years of that! I wouldn't trade my hysterectomy for anything
Papa said to tell you and jud "thank you" again for scaring him into checking his blood sugar every day! He is holding around 140 right now
Hope you feel better soon. Endo can make you sick as a dog!Gram
 
#5 ·
I was diagnosed with endo in '92 after years of painful periods. I believe the lap is still the only way to confirm it. I have had IBS since the late 80s with alternating C/D, was a C for many many years and now I think I'm back to alternating. I never had any bladder problems, luckily. My periods were regular thanks to birth control pills; the only difficulty I had was the first 2 days...fainting, vomiting, horrible cramps. As for heredity, I'm adopted and I only know my birthmother's side (I reunited with her a year ago) and nothing there. I recently asked my GYN if scar tissue from the lap could be triggering my IBS; he said there's no way to know without having another lap. My GI doc says he has many patients who have both IBS and endo. The most persistant symptom I had of endo is pain during intercourse. I was left at the altar over that one.Good luck in your quest!Karen
 
#6 ·
Gram, that's such great news about Papa! I'm glad he turned out to be one of the smart ones about diabetes. As for possible endo, I do have continual bladder infections and, of course, IBS. But for many years (even during IBS) my periods were regular as clockwork, and I didn't know the meaning of the word cramps. No infertility probs, either. However, for the last several years (since entering my 40s) I've developed cramps, ovarian cysts, and weird periods. (Still working on the one that started June 24th.) Could just be perimenopause, I suppose. I'm seeing the gyno next Tue. and maybe I'll ask about the lap.
 
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#7 ·
I had severe cramping for 5 years and after years of complaining to doctors finally had one do a laporoscopy in april. The surgery was very easy just lots of bruising and soreness. The doctor said is was because I am so skinny and the moving around caused bruising. I was up and about the same night. I still have bad cramps but since I am trying to get pregnant through artificial insemination(sterile husband) I can't be put on the pill or hormone therapy. I had alot of scarring by my colon/bowel area which is where I get most cramping. My ibs has been pretty good for a few months since using the caltate and quitting my job. If you think it is something you may have I would go ahead with the surgery. I is worth it.
 
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#8 ·
Yep, had endo symptoms from the time I started my periods at 13! I was diagnosed via lap in 1988.I always had cramping, and lots of D with my period. Nasty pain, too. I've been on depo provera shots for a little over three years now and they have completely stopped my periods. The endo pain now only happens when I wait too long to get the shot or if i don't eat and rest right.------------------Color Rainbows in the Rain
 
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#9 ·
Endometriosis also. Hysterectomy years ago. But, it had gotton so bad that the tissue was up into my intestines and they had to scrape that and, remove a king size tumor. from all that I've read, I often wonder if it's the toxins that build from the amount of waste that is trapped in the system. They say it's like a group thing, the toxins clamp to the side of tissue and stay. When the next one comes along, it stops in the same place before long those toxins become a grouping, suspected to become cancerous cells before long... as far as I know only antioxidants have the power to break them apart so they can be carried safely out of your system. So, does the trapped waste cause endo? How many of you had the c-type of ibs?------------------Good health to you,
 
#10 ·
one of your comments really scares me, omni! twin sister, zig -- yes, I prob. have endo. (though never diagnosed with the lapro. - long story). as you know, I also have other similar problems as you. I too have been wondering just how much pain, and how many problems, the endo. can cause on its own. also, I think I'm perimen. and that my hormones have gotten really whacky.
 
#11 ·
Yes, I had endometriosis too. Many years of menstrual cramping (worse than labour pains)and sometimes several hours of labour-like pains leading to passing lumpy clots. The Gynaecologist who did my hysterectomy said it was a miracle I produced one live baby out of 4, because the walls of my uterus were full of tumours (non-cancerous) and were 3 times normal thickness. My diagnosis was arrived at after a D & C.For most of my reproductive years I suffered badly from iron-deficiency anaemia, and taking iron just caused constipation, which led to haemorrhoids, which bled and led again to anaemia, so it was a vicious cycle.I believe that endometriosis and its consequences aggravated my IBS for many years, because after my hysterectomy I was IBS-free for almost 10 years. It came back when I got new stresses!I wouldn't worry about having a hysterectomy if you need it. It's one of the best things that ever happened to me. No more pain and no more anaemia. ------------------Phyllis
 
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#12 ·
Zig I was told by a DR. that endo can cause IBS, beacuse of the way it grows on everything. Maybe thats why you have IBS? To bad for me they checked and thats not why I have IBS. But maybe thats why you do and they could remove it and you'd be better. So have alpo done and find out it is not that bad, I have it done twice. Good Luck to you and let me know how it works out for you.I'm praying for you,Kendra
 
#13 ·
Hi Zigmissus, as you may recall, I was diagnosed with endo via laporoscopy. I know of no other way to accurately document it unfortunately. I ended up with a vag hyster to try to alleviate my bowel symptoms to no avail. Seems it was the yeast problem all along, since the Diflucan, low sugar diet, and avoiding citric acid took care of my stooling, cramping, and rectal pain. It also took care of a lot of my bloating. My stool problems were preceded by a vag and a bladder infection while on Amoxicillin for over a year.The painful periods I had had all my life were finally alleviated by 800mg of Ibuprofen (taken with food) once every 12 hrs. for two days at the oncet of my period. This was found when they were ruling out rheumatoid arthritis and doc tried me on Naprosyn. It did nothing for my fibro pain, but had it not been for the drainage, I wouldn't have known I had my period when I was on it. Wish I had known about that earlier. I had no ulcer problems so could handle that amount of ibuprofen with that short and infrequent dosage. Sorry I can't answer some of your other questions for you. Hope you find relief from your symptoms soon.M.
 
#15 ·
ZigmissusI have endometriosis and it isn't pretty. I've had two extensive operative laps where endo and adhesions actually fused my bowel to my uterus which caused my IBS to flare up to say the least. From the research I've done, what my doctors have said, and my own experiences, I can say that Endo can cause many symptoms with the bowels and bladder. Both my gastroenterologist and endo surgeon believe that endo and I.B.S. can go hand in hand. There are many causes as endometriosis can actually be on or in the bowels or the prostaglandins (people with endo tend to release much more prostaglandins) that your body releases during menstruation can irritate the bowel lining thus causing I.B.S. symptoms or flare ups. I also have been dianosed with I.B.S. after having every g.i. test known to man performed.The only way to get a diagnosis is by laparoscopy; however, a doctor can suspect you have it through your pain, pelvic exams, and sometimes ultrasound.There is no cure for Endometriosis and if the pain is excruciating as can be the case, it must be either managed with medication (those available are sometimes controversial) or surgery. I currently take a suppository of the drug Danazol that I would never take orally. There is a great support group to visit called alt.support.endometriosis where you can learn a lot about endo and bowel problems.I have noticed a decrease in IBS symptoms since my endo treatment although not a cure for the D and cramps sometimes.take caretiff
 
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#16 ·
hi zig- yeah, my endo got me here too- have that and an accelerated scarring disease that resulted in complete & partial bowel obstructions and a resection that removed 8 inches of small intestine. never had the ibs before the resection- since that, have not had any endo attacks (! crossed fingers- that can be quiet, though mine screamed in pain before), but have severe ibs-d.i think you & you docs may be onto something.... good luck and stay well
 
#17 ·
Yes, zig, I am the proud bearer of both endometriosis and IBS (as well as Graves disease and other assorted goodies). The worst of my endo is actually on my bowel. The pain can be incapacitating. I am on narcotic pain meds for this, and they are not doing the greatest job anymore. (Have had IBS for about 24 years and endometriosis for about 17 years.)The other posters are correct. A laparoscopy is the only accurate diagnostic procedure for endo. I've had 3 or 4 of these (brain fog!). Problem is that with each lap, you get adhesions, which exacerbate the pain. My doctor discovered some amazing adhesions, where the bowel is fused and twisted and so on. You know, twist and shout. The so-called treatments for endo are laughable. If I had more time, I would elaborate. Suffice to say, endometriosis can be a terrible disorder that is woefully forgotten by the medical research and pharmaceutical industries. I hope you don't have this.Off my soapbox!To address a few things in your post: My worst endo pain is during ovulation. And the pain is progressive. I'm IBS C/D. You can actually see the swelling on my right side when I ovulate. When I lie flat, there is a little "mountain range" where the pain is located. Between my two pelvic bones you can see the mountain ridge, although it is somewhat vertical. The intestines are swollen in that specific spot. The surgeons can laser endo spots, but they can grow back. Also, endo can be microscopic, so hard to find all the spots--almost impossible, and these spots continue to grow. Endo can also cause pain with intercourse. Sometimes periods can be particularly painful and/or heavy. Heredity? Lord, I hope not for my daughter's sake, but I do know that my aunt had endometriosis and wound up with a hysterectomy.Which, BTW, is often a bad recommendation. I've heard of SO many women who have been told to have the hysterectomy, only to have a reoccurrence of the pain. This is often because the endo can grow on spots not removed during the surgery. (For those who had the hysterectomy and it helped, I'm glad for you and don't dispute your results. Just want to caution that this is not a cure-all, and many women regret the surgery. No offense meant to anyone.)I've had ovarian cysts too. A woman's body is a complicated thing! And perimenopause may be knocking on a lot of our doors, so it IS hard to pinpoint causes.A little trivia: I've read that Marilyn Monroe had endometriosis, which was why she was on strong pain killers. Heard also that Pamela Lee Anderson has suffered from endo. Now, why am I NOT a gorgeous blonde, huh??I didn't mean to go on. Gotta go. Hope this helps.
 
#18 ·
yes, I too have Ibs(20yrs) and endo(20yrs).I also had cervial dsyplasia(abnormal cells).I came as close to cancer as any wants to get. I often wonder how much of it is Ibs. I believe Ibs is just a label that drs give because they can't find what the problem really is. In my case I feel its more endo than Ibs but, when I get stressed it goes straight to my stomach. I have had two laps,laser surgery and infertility due to endo.My husband and I have been trying for two and a half yrs to have a baby. I did become pregant a couple of months ago but lost it. I can't even think about trying again until I get my diarrhea under control. I had chronic d for the last ten yrs and it goes from bad to worse. Yesterday, I had such an attack I thought I was going to the hospital
 
#19 ·
KES and victoria and bug and others -- You've also answered some of my questions. My pain and discomfort is often (but not always) nearly "unbearable" from ovulation on, then I finally have a week when things aren't quite so bad. Like I've said, endo. is likely one of the "culprits," though there seems to be other things going on too. (According to a GI doc, I probably have it growing right by my colon.) You mentioned swelling: I can sure relate to that but couldn't tell if it was due to endo. or what. I also seem to produce ov. cysts on a regular basis. Question: Do you also have burning sensations (I might also have IC and/or other problems, who knows)? Yup, ain't it fun to be female, dealing with these problems?!
[This message has been edited by HipJan (edited 07-10-2000).]
 
#21 ·
victoria -- it's all over most of the pelvic/bladder region. was wondering if anyone else ever experienced burning from endo., such as burning around an ovary. (my gyno. doc doesn't know what to think any more but at first attributed the burning to possible endo.)
 
#22 ·
HipJanYou asked in an earlier message if endo could cause a lot of problems simply on it's own--the answer is a BIG YES. It can cause havoc in the pelvic region which is of course right where some of the bowels sit. In my case, I had excruciating pain for almost 3 years such that getting up and walking was very painful for most of my cycle, with ovulation and menstruation being the worst. This pain was pelvic and diffuse sometimes, stabbing at others, and sometimes burning. Whenever I had the diffuse pelvic pain, it would not only radiate to my back but make my intestines upset too which would cause my IBS to become quite angry and revolt. It was revolting alright
Thank God, through my Sigmoid and Colonoscopy it was discovered that endo had not permeated the bowel wall and I didn't end up needing a resection. (I tell you that if I have to drink one more gallon of GOLYTELY I will simply die--they need to call that GO-ALL-NIGHTLY)The other thing is that I had ovarian endometriomas that caused my ovaries to grow the size of my uterus or larger and fuse to my pelvic walls and bowels. This added pressure placed on the bowels can also cause pain or aggrevate IBS symptoms. There are just so many variables with Endometriosis and the pain it can cause. From what I understand IC and Endometriosis are linked in some way also.Anyway, good luck to you.And KES, you mentioned you have Grave's...me too. I have always wondered if there was a connection with Endo, Grave's and IBS etc.
 
#23 ·
Just wanted to thank everyone for the valuable information/answers to my questions. I saw the gyno today, and she dismissed my endo worries because I have little abdominal pain other than menstrual cramps. (Even my IBS isn't that painful--it's mostly tremendous urgency and loose stools.) After hearing people's endo stories here, I tend to agree that I don't have it. I didn't realize how painful a condition this is, and I really feel for all of you.
 
#24 ·
bug, thanks for explaining! after my next colonoscopy (in 6-7 weeks), I'll see what the GI doc says. (oooohh, I hope mine hasn't permeated the colon wall...though that's not out of the question, given its suspected location.) it also is possible that I have another adenoma (pre-C polyp) or two, which doesn't help any and can create a certain amount of pain, including cramping and nausea.then, it'll be time for my Well Woman exam (it's already scheduled)...and we'll discuss again whether I should go ahead with the lapro. surgery. after what I've been through, the doc might recommend that.
bug, I am glad you are doing better now...right?![This message has been edited by HipJan (edited 07-12-2000).]
 
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#25 ·
Zig --I hate to say this, but your gyn should not just dismiss the endo because you don't have pain...pain is not always associated with it.I had moderate, bordering on severe endo when I was 18 (I am now 32). Before I was diagnosed, for two years, a couple of days before my period, I would have uncontrollable D, cramps that made me want to jump out a window, I would pass out, throw up, get chills. It was HORRIBLE!!! my original gyn told me it was all in my head!!!! After finding a new and fabulous doc, I ended up having a laporoscopy and laser surgery after ruling out everything else under the sun. This is the single best thing I have ever done...besides the endo, they found several cysts and a three inch polyp on the back of my uterus..they got it all except for some residula endo that was later taken care of with the aid of non stop birth control pill for six months. With the help of birth control pills, I have not had had another episode. Speaking of, are you on any kind of birth control? It helps to dry up any existing endo, assuming the case is not severe. If you have any questions, let me know and we can chat.
 
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