Endometriosis

[skbird]

I'm seeing a gynecologist tomorrow with the intent purpose of finding out if I have endometriosis. I have been having worsening IBS symptoms with my menstrual cycle the last year and a half, also bladder symptoms. Recently I was looking online at IBS correlating to hormone fluctiation and some endo sites kept coming up. I have thought about this in the past but since I always mention my horrible periods and PMS problems to doctors and NOT ONE OF THEM has brought up endo, I have written it off. Especially because it just sounds like it sucks. But I mentioned this recently to my current GP - that I was going to a gynecologist to be checked for this and he responded that yes, my symptoms are consistent, and he's sorry he didn't think of this earlier. WTF???

Anyway, I am suffering pretty badly today from IBS stuff, as I have been for the past two weeks now (starts at ovulation for me) to the point where I have had a banana today and some tea but don't have any real interest in food at all at this point. I just found a pretty interesting article about bowel endometriosis and am wondering about people's experiences with symptoms, treatment, and results. I'm not sure I want to go the route of some of the major drugs I've read about, IE Lupron, because I have such a hard time with my moods and health with hormones anyway.

Here's that article: Open Original Shared Link

Any thoughts, feedback, would be greatly appreciated.

Thanks!

Stephanie

[skbird]

OK, so my gyne thinks I probably do have endometriosis and is going to start me on birth control - the ring (Nuring) which is inserted and left in for three weeks. After the first month or so I can start skipping periods and see if that helps me out.

I am having worsening bowel symptoms in a cyclical way, meaning that from ovulation on I am having more and more IBS. The past three days I have hardly eaten anything unless it's liquid (soups, etc) and the occasional toast or banana. I read this in an article today and it made my jaw drop:

ENDOMETRIOSIS OF THE BOWEL

Endometriosis has been reported to grow in almost every organ in the body outside of the reproductive organs. The bowel is the most common non reproductive organ involved with endometriosis.

<snip>

SMALL BOWEL

Endometriosis of the small bowel usually results in bloating and pain which is associated with eating. Often patients with small bowel endometriosis have restricted the amount and type of foods that they eat. The symptoms are slowly progressive over time and the patient may not even realize the extent to which she has altered her diet. Small bowel endometriosis often results in a partial bowel obstruction. As the bowel swells following a meal the bowel kinks, and like a kinked garden hose the contents do not get through until enough pressure builds up to push by the narrowed portion.

Open Original Shared Link

Yipes! This sounds an awful lot like what has been happening to me. I have had relief of symptoms a few times, usually when I make a dietary change, things improve for a few months (the first 6 months of gluten free, for example) but then they start up again. I wonder if this is what's happening to me, and if it gets better when I change things but since it doesn't actually cure it, it catches up with me again and I get sick again.

Anyway, anyone else out there have bowel endometriosis?

Stephanie

[julie5914]

This is interesting - I have had ovarian cysts (which ruptured - ouch) before I started birth control several years back. Futher tests were never done to see if more cysts existed in other places or for endo. I did have my isulin resistance checked a few years back in fear of polycystic ovarian syndrome, but I was not found to be resistant. Have you had that checked?

I have cramps and D with PMS and my period - my sister does too. We always have. I have always just put up with it - it has been unaffected with the gluten-free diet, though the other weeks are fine. D is usually ok with me anyway since C has been what is painful to me.

I have been found to have an inverted uterus (which my gastro could feel as tender from my rectum - sorry for TMI). When she mentioned that I wondered if something funny was going on with that. I also have been found to have an extra loop colon. At least that is what they said since they couldn't make the scope go further in a sigmoidoscopy. Things feel like they get stuck there. I wonder if it is endo/cyst related.

I think I am ready for an MRI that checks everything - how bout you!?!

[skbird]

Well, I have an ultrasound next week and then on Thurs a consult with a GI for the first time. I'll probably end up having most of that stuff done, scopes and all. I'm ready, I'm not doing well. So far I still have my wits but I am living off of poached eggs, baby rice cereal, and creamed dairy free veggie soups... not fun and still feeling full and bloated. Somethings going on...

I haven't been tested for insulin resistance but would be surprised if that was the case - I usually have too low blood sugar (hypoglycemia) which is usually because of overactive insulin. Have not previously found I have any cysts though I suspect it - my mom has one that periodically (ha! a pun in there!) flares up and causes her a lot of pain. I have been told I have a tipped uterus and could not be fitted for a diaphram before because of this.

The last year I have started having a lot of discomfort when I have a bowel movement during my period. I read on another site yesterday someone mentioned it felt like her uterus was coming out when she had a BM. Well, that's sort of what it feels like for me, too. I usually write this stuff off but now that I've read others having this experience I am going to be more alert in documenting my experience. I don't want to mess around with anything on my intestines - my grandmother died of colon cancer - I have nightmares about that.

Stephanie

[julie5914]

Weird, yeah, when I have had to push for a BM, it feels against nature - as though I'm pushing something that's not supposed to come out.

[jams]

I have an appt Oct 4 with the gyno. I talked with my internal medicine dr and he thought it sounds like endo of the bowel. There are times (all the time during my period) that I stand on my tip toes and crunch into a ball. It takes everything out of me to get to the bathroom and endure more pain. My kids were scared at first. Now I just tell them my "tummy" hurts.

I can't wait to find out forsure. I don't want birth control though. I had my husband fixed so I didn't have to mess with that. We had a pretty strong family history of cervical cancers/breast cancers. I try to not mess with my body more then I have to.

Keep me updated on how it goes! Good luck!

[skbird]

I don't want birth control either - had a grandma with breast and uterine cancer, and the other had cervical and colon cancer. I was on the pill for 13 years but these four years off it have not been fun, either. Birth control looks like a better option than lupron, etc, which are even stronger hormone-influencing treatments. At least this ring gets directly absorbed so is lower dose and does not get processed through the liver...

If my symptoms improve with birth control, that will be more info to indicate endometriosis. But I guess we'll see what the ultrasound shows. There don't seem to be any good treatments for endo, not even the laparoscopic surgery is very effective from what I've read. I think at this point that if I am risking breast or cervical cancer but maybe reducing more intestinal damage, etc, by using birth control, it might allow me to come out ahead. Hard to say.

I have been going the natural route for four years and everything I try has a honeymoon period of improvment but then things get worse again. I can't tell you how much money I've spent on various bio-identical progesterone creams, I've taken oodles of vitex agnes (chaste tree berry) and a few months back started Brevail which is a flax lignan supplement - that one improved my moods and took away breast tenderness but hasn't yet curbed any of the rest of my symptoms.

Anyway, back to the drawing board...

Stephanie

[Jen H]

Hey Stephanie,

This past May I found out I have endometriosis. My main symptoms were major cramping 2 weeks before my period, bloating, nausea, and bowel symptoms. Intercourse was also extremely painful.

I had a laparoscopy performed (for a cyst which was enlarged) and my doctor noticed my endometriosis then. He cauterized (sp?) the areas, but told me that there is a good chance it will grow back. From what I've read, and from what my doctor said, the only sure way of diagnosing endo is to have a laparoscopy. I understand your hesitancy to have this done. I'm not sure I would have had the procedure done if it weren't for the cyst.

I still have some cramping and bowel symptoms with my periods, but it is nowhere near as painful as it was. I was given the option of trying Lupron (hormone injections), but was afraid of the side effects. It puts your body into menopause for up to 6 months and allows your body to "dry" up the endo.

I have also found that certain foods are more comforting when I have endo symptoms. I eat a lot of bananas, rice, and tea during that time. For some reason warm foods seem to feel good. I've also used a heating pad when my cramps are really bad.

Anyways, I hope you're feeling better soon. Keep us posted on your progress. Feel free to PM me if you have any more questions.

Jen

[Misa]

I had endometrioses about four years ago. The surgeon told me it was the worst case she had ever operated on She also said it would return if I didn't start with strong hormones. I knew I wasn't going to start messing my system further with artificial hormones, so I did research on natural cures. I don't normally recommend books, but this is like a bible for anyone with endometrioses. It's called Endometrioses - A Key To Healing Through Nutrition by Dian Shepperson Mills.

I upped my own progesterone levels (usually too low in endo) by taking zinc and B6 the second half cycle and limited refined carbohydrates, sugar, red meat and milk. I also took digestive enzymes between meals as these take away any debris placed where it shouldn't be.....such as outside the colon. I haven't had endo since the operation

Misa

[aurora]

OK, so my gyne thinks I probably do have endometriosis and is going to start me on birth control - the ring (Nuring) which is inserted and left in for three weeks. After the first month or so I can start skipping periods and see if that helps me out.

I am having worsening bowel symptoms in a cyclical way, meaning that from ovulation on I am having more and more IBS. The past three days I have hardly eaten anything unless it's liquid (soups, etc) and the occasional toast or banana. I read this in an article today and it made my jaw drop:

Open Original Shared Link

Yipes! This sounds an awful lot like what has been happening to me. I have had relief of symptoms a few times, usually when I make a dietary change, things improve for a few months (the first 6 months of gluten free, for example) but then they start up again. I wonder if this is what's happening to me, and if it gets better when I change things but since it doesn't actually cure it, it catches up with me again and I get sick again.

Anyway, anyone else out there have bowel endometriosis?

Stephanie

<{POST_SNAPBACK}>

Well yes I do! In fact I had it everywhere but especially all over my bowel, I had it all removed. My symptoms were EXTREME pain, couldnt move (could sometimes crawl across the floor!) and vomiting sometimes. Also was in the bathroom most of the day around the beginning of period. EXTREME bloating, bad bad breakouts etc. All of this was before and during period. I had it all removed during a laparoscopy and everything seemed ok for a while but has been pretty painful lately and I've had heaps of other health problems but i only just found out about gluten sensitivity and my doctor (who I must say is not THE most helpful) seems to think there is a link there. A nurse mother of my friend who is a naturopath also says she says many many women who have wheat/gluten allergies and endometriosis. Not sure if this is all true or not but is an interesting thought. It will be interesting to see if this gluten free diet helps endometriosis symptoms now that it has all been removed as I am sure it wouldn't help if it was still there.

I went on birth control for a while (when I was about 15 - am now 18) for endometriosis and it didn't seem to help AT ALL - in relation to those speaking of birth control, but I guess it is all different for everyone.

[skbird]

Well, my Nuvaring lasted all of a week. Three reasons -

#1 started having manic feelings and racing thoughts. not fun.

#2 sex drive dropped to basically zero in about two days.

#3 could feel it pinching during sex.

This latest news to my docs has them re-thinking an earlier diagnosis of bipolar for me - aparantly there is a big correlation between estrogen causing manic episodes in bipolar people. I also have that reaction to SSRI antidepressants, DHEA supplements, and some others (can't remember right now).

I was pretty sure my diet had improved all my emotional symptoms but am now beginning to think that I am at least mildly bipolar, as I have a really great diet now, avoid all sorts of foods that react in me and have developed systems for dealing with stress and stuff. My husband has been telling me about my behavior lately, I mean my behavior all along and I'm beginning to see patterns.

I don't know how this relates to endometriosis for me but now that I'm learning that too much estrogen in a system can cause manic episodes and some meds for bipolar now being explored are anti-estrogen meds like tamoxifen, I'm really finding this all pretty fascinating.

I don't know how it all fits together, but here it is:

#1 I may be bipolar

#2 Estrogen causes hypomanic episodes

#3 Excess estrogen causes or eccaberates endometriosis

#4 Gluten intolerance and endometriosis are common co-conditions, also both have autoimmune elements

#5 Many food intolerance has roots in how your liver deals with things

#6 Autoimmune diseases can cause liver problems

#7 If your liver doesn't function properly, it cannot handle regulation of sex hormones (and other hormones) and you develop imbalances, such as estrogen dominance

Also, SSRI's make me manic. SSRI's are antidepressants like Zoloft and they affect how your brain absorbs serotonin. Nearly half of your body's manufactured serotonin is in your gut. Serotonin is manufactured by your body with the help of vitamin B6 which your body is often deficient in when you have too much estrogen. My gastro says I have IBS and there is nothing physically going on in there that could be seen in tests and scopes. I'm wondering if serotonin imbalances in the gut can have anything to do with malfuntioning gut symptoms?

One thing that confuses me is that estrogen acts as a natural antidepressant, yet it also reduces your bodies B6, thereby making you deficient in serotonin and as a result, depressed. I don't know how to make that part work.

I feel like I have a lot of a big picture here but not quite the fine point on it. So for now, I am going to learn more about dealing with hormone imbalance and supplements that help my liver run more efficiently. I have been taking milk thistle, beet root, and lots of turmeric the last few days and been feeling quite a bit better, even had a good return of sex drive. Oh, also taking sublingual B6 again and my mood is better. The feeling a little frantic I have to chalk up to weird things going on at work.

Wow, this was long... hope it was interesting!!

Stephanie

[keebs530]

Hey guys. I was diagnosed with endometriosis in May of this past year as well (JenH -- I'm also a JenH... small world). What I would definately tell you is that if you are having these problems, GET a laprascopy done. It really is not that bad and it can help give you piece of mind to have a definate name to what you have. I actually am looking at further surgery within the next two months as my bowel was never checked and I have very typical bowel endo symptoms.

I have actually read in numerous places that taking wheat out of the diet helps with endo... I am beginning to wonder if I am not Celiac (antibodies high, diet definately helped, but biopsies negative) and that it just happens to be bowel endo instead...

If you have not been diagnosed with bipolar, I would hold off on getting diagnosed and have a laprascopy done. I know that the endo definately plays with my moods and when I'm down, I can be really down...

I also just started taking Ambien... I would definately suggest this. Because of the endo (I'm assuming) I was not ever in a real deep sleep and ever since starting the Ambien (a month ago) I have been SUCH a happier person... it's unbelievable.

Good luck!

[skbird]

Thanks for the info! I realize now my mood swings were the result of using that birth control ring. I was manic while it was in, then had two weeks of depressive bouts after I took it out. Then I read on the web about other women having the same experience. It's amazing how REAL it all feels when it's happening, you believe just about anything your doctor tells you.

Coincidentally, I was on birth control all through my 20's when I kept having mood disorders diagnosed. Hmmmm...

I guess I will have to go the laparoscopy route. I am having pain and very obvious bowel changes that correspond with my cycle now (14 days after my period starts I get this jolt in my intestines that makes it hard to bend, sit, walk, anything, then I have constipation the rest of the cycle with various degrees of cramping and pains that feel like a knife is slashing at my insides - that only happens in bursts and doesn't last long term but makes me double over or gasp a lot). By using a combination of progesterone cream (more than I was before) and taking Brevail, a flax lignan supplement, my period is getting a little lighter and not lasting as long. But if the gut reaction continues to worsen, definitely going for the laparoscope.

Anyway, thanks all for responding to my post. I will continue to check it from time to time. If I still have questions I will get in touch.

Stephanie

[cmerribury]

Hello all.

I've had ovarian cysts that rupture several times a year since about 2001. They are large and very painful, and usually result in an ER visit and pain medication until the blood is absorbed by my abdominal muscles.

In early 2008 I went to see a new OBGYN and he suggested that I may have endometriosis based on my symptoms. So, I had a Laprascopy and was I was diagnosed with endometrosis in May of 2008. I was able to control it for a while due to my birth control. But I went off of that to try to get pregnant and within 2 months was in so much pain I could barely get out of bed each day. When I spoke to my OBGYN he said that best treatment was the Lupro (hormones that put your body into menopause for 6 months at a time), but I turned that down. I went back onto my pill and thought I'd never be able to control the pain.

Then I read an article about the link between endometriosis pain and gluten in the diet. The research suggests that about 80% of women with endo pain have relief with a gluten-free diet, and so I've decided to give it a try.

I have two aunts with celiac disease...so I know what a commitment it is, but fortunately have their knowledge and experience to help me along. I'll post back in a few weeks to let you all know if I'm getting any relief. Wish me luck!

[Karrin]

I'm seeing a gynecologist tomorrow with the intent purpose of finding out if I have endometriosis. I have been having worsening IBS symptoms with my menstrual cycle the last year and a half, also bladder symptoms. Recently I was looking online at IBS correlating to hormone fluctiation and some endo sites kept coming up. I have thought about this in the past but since I always mention my horrible periods and PMS problems to doctors and NOT ONE OF THEM has brought up endo, I have written it off. Especially because it just sounds like it sucks. But I mentioned this recently to my current GP - that I was going to a gynecologist to be checked for this and he responded that yes, my symptoms are consistent, and he's sorry he didn't think of this earlier. WTF???

Anyway, I am suffering pretty badly today from IBS stuff, as I have been for the past two weeks now (starts at ovulation for me) to the point where I have had a banana today and some tea but don't have any real interest in food at all at this point. I just found a pretty interesting article about bowel endometriosis and am wondering about people's experiences with symptoms, treatment, and results. I'm not sure I want to go the route of some of the major drugs I've read about, IE Lupron, because I have such a hard time with my moods and health with hormones anyway.

Here's that article: Open Original Shared Link

Any thoughts, feedback, would be greatly appreciated.

Thanks!

Stephanie

I'm sorry to hear you might have endometriosis.

I've just recently been told (by blood test only) I have celiacs -going on two weeks now, so I'm still figuring out what symptoms go to the celiacs and what goes with my endometriosis, but they do seem to worsen around the time I ovulate straight up to my period. I once thought all my symptoms were due to endometriosis, but now I'm not so sure.

I also had one heck of a time getting my doctors to believe my symptoms weren't just 'cramps' or normal period bloat, and I went through two laprascopies before I was diagnosed. My advice to you is to research the OBGYN whose preforming the surgery (if you opt to go that route). My first doctor was a nice guy, but he spent fewer than 15 minutes exploring my abdomen before rushing off to deliver a baby and declaring I was endo-free. The second time around I went to a specialist recommended by a friend and was under for about an hour. My recovery was so much better too! He found a little bit of scar tissue on the back of my pelvic wall. I opted not to go with the Lupron, simply because my husband and I were trying to conceive up 'til a few months back (when I took a really bad turn for the worse with my other, as of that time, undiagnosed celiacs.) I'm not sure I would go on it personally, because the side effects seemed rather scary to me. My cramps and period related symptoms have gotten better post-surgery. He cut out the scar tissue, which, for me, wasn't that much, but happened to be in just the right spot to cause me a lot of pain.

[bas1017]

Just found this thread and reading it has been very informational. I was diagnosed with endomitriosis in 1996, in college. I always had cramps that were so sever I went through 30 vicodin every month, and would insert a super plus tampon just to stand up and have it leak through. Mine were always limited to period cramps, until I had a laposcropy in 1997. The day after is when my IBS sysmptoms startd. Then I read that one way endometriosis commonly spreads to other organs is during surgery. After my surgery my doctor gave me 3 depo shots in one month, instead of the 1 every 3 months, to dry me out in essence. I then took the pill everyday up until about 2 years ago. So I didn't have a period for 10 years. It eliminated the period cramps obviously but not the IBS. Went to a gastronologist in 2000 (at 22 I was by far the youngest person in there and they looked at me like what is that youngster doing here, lol) and ran almost every test under the sun. Upper GI, lower GI, colonoscopy. I was getting no answers and felt like a guinea pig and just couldn't take it anymore. So pretty much just dealth with it as much as I knew how, which meant never really eating out in public and always knowing where the closest bathroom was Then a couple of years ago I just decided after 10 years of no period, enough was enough, that was probably not the most healthy thing but it worked at the time. Since then my endo symptoms have unfortunately started to come back, and this time I feel there is much more info about endo than when I was first diagnosed. I went through some very difficult things a year ago and was drinking alot of vodka (never had been a big vodka drinker before and it was also vodka distilled from wheat). I was never really a hard sleeper and when I drink too much I sleep but don't think I ever fall into a deep sleep, then I had a panic attack and started to get anxiety. I believe it is because my liver keeps me up while trying to get rid of the alcohol, and I now know that endo and celiacs can put a strain on the liver because your body is not getting the nutrients it needs from food. I had tried the Nuva Ring for a few months but really would like to say away from any and all birth control because I have just done it for so long, my body needs to reset without it. I have been gluten free for only a month but it has made such a difference in how my body functions, it really is amazing. And I can tell when I do eat gluten accidentally because I will have all the old symptoms instantly. It's amazing how used to be unhealthy you get and just think that is how it has to be until, you do get more healthy, then you know how it feels to be normal and it's great!!!!! I know it is hard for people that have never been through this to understand and sometimes you constantly feel like you are always complaining that you don't feel good. I am really there seems to be more and more information, that truly is helping me self diagnose, because I think one of the problems is one doctor can't recognize everything. I had a gyno, gastro and my family physician and I believe if all three shared the info they had constantly things would have been different. But I am going to keep doing my research and be my own guinea pig

Hope everyone is doing better!!!

[bas1017]

Also, not that your doctor wouldn't know this, but you never know...endometriosis of the bowel is on the outside of the bowl so cannot be seen with a colonoscopy.

[bird]

I am so happy to have found this forum. I was diagnosed via laparascopy in December 08 that I have moderately severe endo. (level 3 out of 4). The physician removed all of the "chocolate cysts" from my abdomen as well as my appendix - where endo seemed to travel. I chose not to partake in all the pharmaceuticals because of the nasty side effects. Instead, I purchased Dian Mills book - "Endometriosis: a key to healing and fertilitey through nutrition." Fantastic book for any of you who have not yet heard of it. Dian mentions gluten/dairy/alcohol, etc as being triggers to endo pain. I did pretty good the first couple months of 09 with my diet and laying off alcohol. Then I just threw caution to the wind and went right back to my old diet (and drinking) and alas, here it is August and I am again in severe pain. For whatever reason, the week AFTER my period was the worst in July. I was EATING advil like candy. no energy, no motivation...etc. etc.

I recently visited a homeopathic doctor who specializing in kinesiology. You have to have a fairly open mind when visiting something so different from the medical world. She was fantastic! She confirmed pretty much all of the things I had read in Dian's book, but took it to a more specific level. You are very sensitive to GLUTEN. Ahhhh... that's great (sarcasm). so, my last several years of getting off of white bread and switching to wheat everything probably exacerbated my symptoms - not that white bread is good for you either - but wheat stuff seems more gluten heavy?!? maybe that is my imagination. At any rate, I started doing research on gluten and found celiac disease. A lot of my endo symptoms are very similar. I have JUST started watching my gluten intake and am still not sure where all I will find it. I am laying off breads/pastas and unfortunately, beer. I am hoping this makes a difference.

other things that I do for Endo: good, organic multi-vitamin, EFA, probiotic and when I remember a digestive enzyme. I also think adding a b-complex would be good for liver support. Oh, and I switched to wine...when I just need something after a stressful day at work.

[littleflower]

Hello there,

I had endo problems for years - didn't know it was that of course. Before I became gluten and milk free I had a hysterectomy for the endo five years ago and it was wonderful afterwards. I would roll into a ball with the pain and be unable to move for hours at a time. I bled most of the month towards the end, then all of that stopped with the op. - wonderful! No more periods, what bliss. Still had the bowel probs though so eventually went on the gluten and milk free diet. Things have got a bit rough again since I've started the menopause as I still have my ovaries. I'm hoping that will sort itself out eventually when my body settles down. Good luck with surgery if you go for that - I've never looked back.