Gastroparesis and endometriosis

Has anyone been diagnosed with both?

I have IBS alternating C and D, gastroparesis, and non specific dysmotility of the small intestine. I'm starting to think I have endometriosis as well.

My symptoms seem to get worse around my period and I get lots of abdominal pain. I used to get the most severely painful periods. I'm now on the mini pill so I don't get periods except for some light spotting. The only problem is every time I have spotting my bowels start acting up. The other day I had severe diarrhea right before I started getting spotting. 4 days of very light flow and i'm still having all this pain in my lower left abdomen. No more diarrhea except for the first 2 days. I'm just really bloated and painful. Not eating much except maybe one meal a day.

My GI has tested me for just about everything but still hasn't found anything specific to treat. I've talked to my gyno and she recommended I go on the pill and that has helped. I've now been on the pill for 6 months but I am still having pain.

Does this sound like endometriosis? Or is my GI tract just reacting to hormone fluctuations?

For those who have had endometriosis what were your symptoms? How did you get a diagnosis?

Report post

9 replies. Join the discussion

I was unfortunely in the same situation and chose a histerectomy to narrow in on the gastroparesis. When I was diagnosed with cystitis they did an exploratory lap and found I also had a small amount of endometriosis. It was a small amount but I have it. I also had ovarian cyst problems as well. My GI kept saying it was a GYN problem and my GYN kept telling me I had a GI problem. I was in abdominal pain all the time. I couldnt work full time becuase I kept having abdominal spasms and pain. I finally decided to move back to MA and move in with my parents and have a hysterectomy. They found I had a polyp in my uterus and fibroids as well. Though it did relieve some of my symtoms, it didn't relieve all and I was back to the GI where I was diagnosed with gp and dismotility. I took domperidone for awhile and it took months for my stomach to calm down. I still have the constipation problems and the only answer they have for that is pelvic floor therapy. I am on 3 years with that. I was a nightmare with my bleeding. It went from very heavy to none at all. It was a nightmare and I finally said just take it out. Until you have some sort of exploratory surgery, it would be difficult to know if you have it or not.

Report post

Yes, I have also had a hysterectomy...which, long story short only exaggerated my digestive tract paralysis. (The doc made a mistake during my hysterectomy and I had to get a corrective surgery on my kidney because he had killed off 15 percent of my kidney!) So, I guess, in answer to your question in short, yes I do have/had both. I am so sorry you are going through this...if it is one thing we sufferers of this disease don't need, it's another illness!!! But, sadly, many of us do have multiple illnesses...just the nature of the game I guess.
By the way, I'm horse crazy too! My husband and I used to volunteer at an abused and abandoned horse farm. Oh the sad stories we found out about the beloved horses we took care of...but, they found a great home to come to after being abused for so long.
Lots of love you you and many tummy hugs,
Melissa

Report post

I have colonic inertia and endometrsois and just had some investigations to see if the endo was causeing the problems. It wasnt and he burnt some endo away. The ONLY way to diagnose endometrosis is via laproscopy. My symptoms also affect my bowels. It is mainly severe pain when ovulating and when on my period, back ache etc.

Report post

Oh, man. ME TOO!!!! I had a CT scan that revealed fluid in my abdomen, and my GI doctor said it was probably from my GYN problems, and my GYN said it was probably related to my GI issues.
I didn't have endometriosis, turns out I had adenomyosis (similar, horribly painful, extremely heavy bleeding). Had a hysterectomy and while it didn't solve my dysmotility issues it did make my life significantly better not having to deal with all that pain and bleeding. Actually I consider having it one of the best decisions I have ever made and wish I had done it five years earlier.
The hormones that make you have your period also affect the smooth muscles of your colon and that's why so many people have diarrhea with their periods. I had horrible diarrhea the first couple of days- gee, wasn't THAT fun, dealing with horrible pain, diarrhea, and an insane amount of bleeding.
*shudders*
Of course any abdominal surgery can further impact your motility issues due to adhesions, so you have to weight the benefits. For me it was a no-brainer though- I literally could not bear the idea of going through it even one more month.
Good luck!

Report post

Hi there,

Grab a cup of tea...this is a long story...

Yes, I'm sitting here at this moment feeling quite horrible, well actually now that my double dose of pain meds have kicked in some, I'm at least able to write, but I have one heating pad on my back, and one on my belly. I just had a total (uterus, both ovaries, tubes and cervix) hysterectomy two weeks ago. I just saw the doctor yesterday because of the severe and continued pain. He explained that the surgery was more extensive than he had planned for - the endometriosis was very advanced, he removed a very large nodule in addition to everything else. He also said that my colon was swollen to 3 times normal, and the gastroparesis was very obvious.

I've had pain for about as long as I can remember with endometriosis, since I was about 13 I think. In my early 20's I had a diagnostic lap to say "yep, you got it", then was put on the pill for many years. In 2004 I had a D&C with laser ablation at which point the doc said it was extensive, but she felt she got it all except for what was on my bladder. I was put on Danazol to help shrink it at that point...for about 6 months. She said next step - hysterectomy. Yep, she was right! So, as I said, two weeks ago I had the total hysterectomy.

The doctor said yesterday that my recovery will take about 3 to 4 months instead of the typical 6 weeks because of the severity of the endo and the GP involvement.

I've had colitis for a long time too - probably since I was in my teens or twenties, but it got really bad in 2009, and at that time, I was put on steroids. Still on them.

Then in 2010, I started vomiting and having excruciating pain, spent many weeks in the hospital & ER (different times) and have had multiple surgeries. Finally diagnosed a year ago with gastroparesis. So, I'm learning to live with that now too, along with some other auto-immune stuff.

I do understand about everything feeling worse around the time of your period. Everything always did seem to get worse for me then as well. Seemed like the bowel/colon area was really affected to. Always had extra bouts of diarrhhea and bowel pain. It really seemed to affect my lower back the worst. With the endo, I would have severe pain for a couple to a few days every month when I wasn't on the pill. I would miss school or work. I found the best remedy for me, in addition to the pain meds, is to take a tub bath as hot water as I can stand, and use heating pads. Heat always feels the best to me. The ThermaCarePads (I think that's the name) for lower back pain were great to wear when I needed to leave the house or didn't want to be connected to a cord. A bit pricey for everyday use, but they felt good.

If you are having severe cramps, back pain, etc., every month when you are not on the pill, you probably should be evaluated for endometriosis. The way they diagnosed me was via a laproscopy. Back then, they didn't do the laser treatments, they only diagnosed, or at least that's what they did with me.

My personal advice would be to not wait as long as I did to have the hysterectomy. I wish I had pushed for it years ago. I think I used to downplay my pain - because, I thought it must be normal cramps - it wasn't. I didn't realize everyone did not feel this much pain...I guess we all learn to live with things, and that was my "normal", even thought it was anything but normal.

At the very least, please talk to your gyn, and explain that you have gp and fully describe your symptoms of pain to them.

Nobody should have to live in pain. There are remedies.

I wish you all the best, and many happy pain-free days ahead.

Report post

My GYN thought I might have it too but went in and looked around but I didn't have it. I also have horrible cramps and GI issues when I have my period. The GYN just blamed it all on my GI tract and called my GI personally so they could get on the same page but it didn't work that way. She wanted him to totally stop by period but he only agreed to switch me to a period every 3 months once my period got regulated on the pill where I was having a pretty normal period once a month. That never happened after 3 months on two different birth control pills and so the GYN took me off of the pills totally. My GI didn't like that at all but gave it a couple of months to see if things would straighten themselves out but they did not so I've switched to a different doctor within the same practice. I go to see her next Wednesday so we will see if this doctor can do what the old one could/would not do. Sorry if I took over your thread but I think it is most helpful to heard about what others going through similar things.

Report post

Endometriosis, wow, I'm so old I'd forgotten all about it. I had it, too, like Hazey. Mine left me w/stinky chocolate brown leakage all month long. That started at 14 (1964), the pain continued on and on as did the endo. Finally, at 19, I was scraped-it was pretty extensive and pretty painful. I had 9 documented miscarriages, or maybe 10, I can't remember. The OB/GYN that I went to see in a larger town than the one I came from said I'd never have a baby unless it was all cleared out, so it was, again. I had my son (in the photo), then another miscarriage and finally a hysterectomy. I should've had that at 18 but they all said I was too young.
I've had constipation problems all of my life and until about 20 years ago had never heard of a gastro doc. I was more constipated all the time than anything else. Lots of pelvic and GI cramps, too. After I was scraped it was better but then it would always revert to the pain and brown leakage.
Thankfully that all stopped, of course, but I'm still stuck with the gastroparesis which is getting worse like it usually does. More bloating, vomiting, nausea-I dread getting up sometimes.
That's my story. I hope you all feel better soon.
Elisabeth

Report post

I have severe GP and have had endometriosis. The endometriosis was causing me severe right lower quadrant pain. No one could explain what was causing it. Around the same time I had to go in and have my tubes tied because my birth control was screwing up some of my labs. My obgyn took me into surgery to tie my tubes, and decided to look and see if he could see the cause of my pain. When he looked he found I had endometriosis. He burned it off my ovary and I have not had a problem since.
Also all the major medical problems I am having are pushing me into early menopause, so now I don't get periods unless I take hormones. Hope this helps

Report post

Wow! Thank you all so much!

I'm going to try and get back in to see my gyno. Probably take about 2 months to get me in.

I'm actually doing much better these last few months now that I am on the pill. Of course, that is probably because I'm not really getting periods anymore, just a few days of spotting/very very light flow. Before this it was just horrible. I remember being 14 yrs old and having such bad periods I wouldn't be able to walk back to the house. There was this one time I started my period while about 5 miles from home while riding my horse. That was the longest 5 miles back home ever! Lucky my horse could probably take me back home if I was unconscious.

Most of my pain comes from one specific spot. About 2 inches at a diagonal away from my belly button. Does this sound like referred pain from my ovary? Or is this actual ovarian pain? or something else?

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support AGMD

Help the Association of Gastrointestinal Motility Disorders reach its goals and support people like yourself by making a donation today.

Donate to the Association of Gastrointestinal Motility Disorders

Advertisement

Advertisement

Discussion topics

Helpful links from AGMD

Community leaders