Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Hey everyone. I'm new and found this group while researching as much info as I could. I've never joined a group before but I have no friends or family going through what I'm going through. My husband is wonderful but doesn't really get it. So, here I am.
I've had terrible periods that started when I was eleven. I remember sitting on the toilet crying about all of the blood, bleeding through the giant pads my mom got me. By the age of 12 I was using super tampons while using a pad at the same time. The pain wasn't bad but with my first period they were regular. Every 22-24 days and lasting over a week. Still to this day that's my cycle.
In my late teens the monthly visit started to get painful. I would feel cramps that travelled through my bowel. They would launch me off of any chair I was sitting in. I was plagued by diarrhea.
Over the years I was put on all kinds of birth control and I reaped all of the side effects that came with those. I was told by countless doctors that all was normal. I never felt normal. The word endometriosis was sometimes used but no doctor ever offered to explore it. I didn't know enough to ask.
In my late 20's I started to feel exceptionally terrible most of the time and doctor after doctor I finally found someone to listen.
Last year I was diagnosed with Hashimoto's disease and came back with borderline Celiac. I had a clean ultrasound and once again endo was mentioned with no follow through. I stopped eating gluten and felt drastically better within just a few, short months. However my monthly cycles didn't get better. They've gotten worse.
I'm now 32 and I have constant pain on my right side. My bowel has started bleeding with each cycle and the cramps are often unbearable radiating from my colon.
My most recent yearly exam I was in informed that my uterus has tipped over my bowel instead of being in its regular position. For the first time in my life I experienced pain during a routine pelvic exam.
I get another ultrasound next week. And have a meeting with a surgical OB/Gyn a couple weeks after that to talk about laproscopic diagnosis.
I guess, I'm scared. I want to have endometriosis so that I have answers. And I don't want to have it because that means I have endometriosis and it's only going to get harder.
I've had terrible periods that started when I was eleven. I remember sitting on the toilet crying about all of the blood, bleeding through the giant pads my mom got me. By the age of 12 I was using super tampons while using a pad at the same time. The pain wasn't bad but with my first period they were regular. Every 22-24 days and lasting over a week. Still to this day that's my cycle.
In my late teens the monthly visit started to get painful. I would feel cramps that travelled through my bowel. They would launch me off of any chair I was sitting in. I was plagued by diarrhea.
Over the years I was put on all kinds of birth control and I reaped all of the side effects that came with those. I was told by countless doctors that all was normal. I never felt normal. The word endometriosis was sometimes used but no doctor ever offered to explore it. I didn't know enough to ask.
In my late 20's I started to feel exceptionally terrible most of the time and doctor after doctor I finally found someone to listen.
Last year I was diagnosed with Hashimoto's disease and came back with borderline Celiac. I had a clean ultrasound and once again endo was mentioned with no follow through. I stopped eating gluten and felt drastically better within just a few, short months. However my monthly cycles didn't get better. They've gotten worse.
I'm now 32 and I have constant pain on my right side. My bowel has started bleeding with each cycle and the cramps are often unbearable radiating from my colon.
My most recent yearly exam I was in informed that my uterus has tipped over my bowel instead of being in its regular position. For the first time in my life I experienced pain during a routine pelvic exam.
I get another ultrasound next week. And have a meeting with a surgical OB/Gyn a couple weeks after that to talk about laproscopic diagnosis.
I guess, I'm scared. I want to have endometriosis so that I have answers. And I don't want to have it because that means I have endometriosis and it's only going to get harder.
I talked to one of my good friends today and what he told me is worthy of repeating. "Everything that you are going through right now just proves how strong you really are. And if you can get through this, you can do anything."
I think the only thing we can really do is take things one day at a time and get support from others. Feel free to message me if you would like to talk :)
It definitely sounds like you could have endometriosis, and possibly a more severe form since your bowel is pretty heavily involved. I know what you mean about the cramps that launch you off of chairs; I get those too. I call them "bum shooters" and they leave me with "ass migraines" lol. I pretty much have a constant ache in my rectum...not fun! From having two laps, I know that this is due to what they call "complete obliteration of the posterior cul-de-sac" which in layman's terms means that my rectum is fused to the back of my uterus with scar tissue. It's actually a pretty common occurrence with endo, and it can definitely cause rectal bleeding. Next time I have a lap I will probably also be having that section of my colon removed which is a scary thought, but I also will do just about anything to not have this pain anymore.
I would definitely push as hard as you can for the surgery. I will warn you, however, that many many many women on here had their first laps with a regular OB/GYN and then woke up to be told "Yup, you are covered in stage 4 endo, but it was so bad I couldn't remove it". Then we all end up having a second lap with a specialist or reproductive endocrinologist, and for some the second surgery is far more successful and brings some pain relief. I would recommend trying to take this route first if you can. My regular OB/GYN is wonderful and I love her, but she admitted to me that she is in no way qualified to treat my endo because of how advanced it is. My RE, on the other hand, loves a good challenge and says that although my disease is pretty advanced, he's seen worse and he's not afraid to go in there and kick ass (his words, not mine!).
So. Good luck, keep us posted, and push hard for the surgery! It's really not that bad. I've said it before and I'll say it again: I'd rather recovery from surgery 100 times than suffer through one hour of one unmedicated period.
My OB referred me to the doctor I'm going to see in a few weeks. He specializes in all things endometrial and is a surgeon. I google stalked him and am excited to see him after what I've read. Hoping.
I'm worried that my rectum and uterus have become "one" . I've thought that for years and now with being told that my uterus has tipped I feel a little justified.
Do you ever feel crazy? Like when I am not in pain I question myself. Am I just being dramatic? Is it not as bad as I thought?
I even blew off the "rectal period" for two months because I talked myself out of the worry.
I feel like doctors telling me I was normal for so long, stopped me from seeking answers and caused a lot of self doubt.
it does sound like endo. You mentioned you have a tipped uterus. This is very indicative of endo. I had/have a tipped uterus from the endo pushing it over, and I had it "put in place" during a laparoscopy (lap) with an endo specialist...its tipped again though.
I also have the pain shooting up my butt. Its agonizing. From what I understand, they're muscle spasms caused by endo on the intestines/bowel.
You mentioned your bowel is bleeding with your cycle; I would definitely talk to your OB/GYN about getting a colonoscopy from a GI (I don't know if you've had one). But since you mention bleeding from there, you should check to see whats going on...it could be hemorrhoids causing you to bleed too. If you have endo, it can invade the colon and cause bleeding. So, you should have that checked out.
Also, the vast majority of OB/GYN's are just not qualified to treat endo and remove it during surgery. Every time I had surgery with a regular OB/GYN, I felt worse after, and they only removed a little. I have stage IV endo, and my first surgery when I was 18, the awful OB/GYN MISSED IT! How did she miss stage IV endo; endo that's everywhere, literally. It is a HUGE difference to have surgery and be treated by an OB/GYN and an endo specialist or at least a Reproductive Endocrinologist.
I know quite a few people with celiac, and as you said, they said they felt 100% better a little while after they eliminated gluten. Its a relatively easy thing to control, and you know how to control it, thus a good diagnosis. As opposed to endo, it can be very challenging...I've been trying to control it for 17 years, have done almost everything including diets, acupuncture, surgery's, BC pills, continuous BC pills, and nothing worked. The surgery with the endo specialist was the only thing that gave me some relief and a little time (few months). But it was short lived. So, I understand you want a answers, but endo can be very difficult to treat; unlike celiac which is clear cut-eliminate gluten and sometimes wheat. And that's it; no awful hormones, surgery's, talks of hysterectomy's, worried you can't have a baby, severe pain that you can count on coming every 3 weeks etc, and some of us every day.
On the flip side, you may have a great "clean up" surgery, or take well to some treatment and feel better too. Everyone is different, and respond differently. I hope you don't have endo, and its something else, possibly another food intolerance like wheat?
However, my guess would be its probably endo, I just hope its not.
So my best advice overall is to find a good Dr. to diagnose and treat endo (if you have it and it sounds like you do). It can be more harmful and obsolete having a regular OB/GYN give you surgery's and treat you since they very usually not qualified to treat endo.
I hope this info helped a little bit. Feel better!
Usually a board certified Reproductive Endocrinologist (RE) is better than a regular OBGYN surgeon. They're usually more skilled and up to date.
I made the mistake of having my first surgery with an OBGYN surgeon who was a "specialist." Turned out he was just a regular surgeon with an inflated ego. NOT a specialist and he was way in over his head.
Surgery is a serious thing so you want to make sure you pick the best surgeon you can. You can't turn back the clock on bad surgery. It took me 6 months to recover from my lap, and he did a lot of damage. Thankfully I did eventually recover, but it could have been a lot worse. I was extremely lucky to have walked away from that bad surgery.
Take your time. Find someone you're comfortable with. And don't be rushed into making any decisions. I don't know if Texas has something similar, but in NY we have a NY State Physician Profile. It lists their credentials and some of their lawsuits/settlements (it only goes back about 10 yrs for lawsuits though).
Good luck and I wish you the best!
I agree with everyone else (not to sound like a broken record) but definitely finding a Dr. that specializes in endo is key, unfortunately GYN's are not usually qualified. The other thing I would recommend is if you do decide that you need a GI Dr. 1. interview them, ask them what they know about endo and 2. ask for a recommendation from your specialist. What I have found that even though endo causes a lot of GI issues for a lot of us, many GI Dr's are not aware of this, and they are super quick to label us with IBS. I like you have chronic diarrhea (last summer it was so bad I could barely leave my house) and I also have rectal bleeding. I was told by 2 different GI Dr's and the OBGYN who did my surgery that absolutely endo does not cause these issues, and even though I had bleeding I was told I have IBS (bleeding is never, never, never associated with IBS). Well fast forward a year since my GI issues got so severe and I now have an awesome GI Dr. he was recommended to me by my R/E since he has worked with many endo pt's, and him and my R/E (and my pelvic pain specialist) agree the GI issues are secondary to endo, (endo causes a lot of irritation and inflammation, which irritates the GI, which can lead to diarrhea, constipation or both). Last week it was discovered that my bowels are likely covered in scar tissue and are pretty inflamed, which explains why I am still miserable despite my medications stopping my period (which solves a lot of problems for me).
The reason I am telling you this long story is because I can't emphasize enough how important it is for you to advocate for yourself! Dr's are not always right. If you don't feel comfortable with them or don't feel like they are listening, then find another one who might be more helpful. Research as much as you can on endo, that way you can go to the Dr armed with information and you can make an educated opinion on whether that Dr is right for you or not. And I totally agree, don't rush or feel pressured to pick a surgeon. I so regret having my surgery with the OBGYN last year, I can't help but wonder how much better I would feel right now had I gone to the right Dr. in the 1st place.
Lastly, I would like to say finding the right treatment team to treat your endo can be extremely frustrating, and may take some time. Don't give up though, if you don't find the right Dr's at first, keep researching and pushing for the care you need and deserve! I took me about a year to finally feel like I have the right Dr's and I feel lucky that it didn't take me longer.
Good luck! I hope you find relief soon. :-)
The last couple days I've been feeling pretty terrible. A lot pain. I've been comforted reading everything I can here. It makes me feel sane.
I don't know much about endometriosis and we don't know yet if I even have it. However, as someone who's had GI issues for years, I wanted to check in with you specifically about the colon pain you mentioned.
You know your body best, so please disregard if this is not useful/relevant to what's going on with you, but your mention of cramps radiating from your colon sounded like something I've been through. Maybe five years ago, I started having these intensely painful spasms in my lower right abdomen, painful to the point that the doctor was worried I might have appendicitis. It felt like a red-hot fist made of knives was clenching inside me. At the time, I had no idea what was happening and it was scary. After a bunch of tests and ruling out other things, I was treated for having a spastic colon, which I've been told is part of IBS.
Doing all the IBS treatments and dietary changes wasn't really helpful for me, but we did find a drug that worked wonders for that particular pain. It's called hyoscyamine, and I've been on it off and on since then. Whenever I go off it for a while and the spasms return, I go back on it and they vanish. So far so good.
Anyway, your colon spasm-y pain may be due to endometriosis, or something else entirely, but I wanted to mention this as something to keep in mind.
Good luck.
I've just had an ultrasound and I'm waiting for my next appointment to figure out what happens from there. I'm going to be asking about a GI doc and a RE.
Your story sounds so familiar and I am sorry you are experiencing such a great deal of pain. I had my hysterectomy four years ago after finally being diagnosed with stage 4 endometriosis. I was told that my case was so severe and that I probably had this disease for over 20 years. I also had a lot of blood work done and found out that I was highly sensitive to gluten so I went on a gluten free diet and immediately felt better. I continue the diet today. The Doctors were not able to get all the endo so I continue to have pain and all the symptoms of a period every month, sometimes two or three times a month. I wish you the best and keep asking questions, be the squeaky wheel until you get the answers you need. Get a second, third or even fourth opinion if you need to, you're worth it!
Best wishes,
Yolanda