So just had a visit to the OBGYN and...

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after a pelvic exam, internal ultrasound and based on my complaints nothing was found. I have been having pain in my left side that started out as a constant thing where now it comes and goes. It was into my hip,down into my groin and the back of my leg. I did some research on my own and endo is what came up. So I decided to call and make an appointment. When it started out it was so bad I nearly hunched over, and was crying out. I noticed blood when I wiped many times. Then after 2 weeks the pain seemed to vanish and within about 4 days it was back. I ended up going to the ER and a CT scan was done. They said it was constipation. I took magnesium citrate and that helped somewhat. I have had this pain for 3 weeks in total. After it came back, it was mild until one night while shopping out of the blue I was hunched over again. I had to sit down and let it pass as much as I could. I thought maybe this is a kidney stone but the CT would've shown that and I don't think they go away and come back. So this is what led me to call the OBGYN. I did notice on the ultrasound there was a blotch of red and blue. I have no idea what that means. The nurse didn't say anything so I'm not sure. When I spoke to the doctor he said they found nothing. He said it may just be constipation or there's something called endometriosis. He said that can cause similar symptoms. He said to wait about 3-4 months and if things persist then to come back. He mentioned the surgery they perform to see if it's there as well as the CA-125 blood test. My question is if the CA-125 comes back normal, is it possible to still have endo? He told me to go home and research it but I can't find much information that I already don't know. He said before the surgery he would do a CT scan to look for any stones (kidney/gall). I guess to rule them out. In the meantime I am supposed to drink lots of water, eat more fiber, and try and have more frequent BM's. I am only 24 and he said as of right now I am fertile so no need to worry about that. 

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  • Posted

    Dear April, 

    I'm sorry to tell you the reality is that Dr.s dont know much if anything about Endometriosis.  CT scans are great and everything but what you really need is a trans vaginal sonogram to rule out any cysts, polyps, fibroids.  Most any Dr. can order one for you at a radiology clinic or in an OBGYN's office.

    I have a pain in my lower left abdomen and I've had several surgeries for removal of endometriosis and cysts, polyps, fibroids, which are common with Endo.  If this is not a gynecological matter, then I understand why they might think its constipation but really?  Do you have a bowel movement every day? If so its not constipation.  The fact that something has already shown up on a scan means dont ignore it!  And yes you can have Endo if the cancer test is negative.

    Either way, it would be a good idea to get a gastro-enterologists (GI Dr.) opinion if not already, as well as your PCP's opinion, but it sounds like you may have tried that.

    Another way to diagnose endometrios without surgery, is to take birth control from a gynecologist who is familiar with Endo and see if the pain goes away.  If it does, its likely there is a cyst or endo that responds to estrogen.  

    Personally, I opted for a laparoscopic surgery against the advice of gynecologists because I knew there was something wrong and it turned out I have stage 3 endo (out of 4 stages, 4 being the worst). Cysts, endo, fibroids, scar tissues etc. were removed.  After these things were cleaned up I still had to go to a pain management Dr. to address the pain, which may not go away after surgery. 

    Sorry if this is a lot of info I'm throwing at you.  I'm just trying to help fast.  Please see the book 8 Weeks to Womens Wellness which outlines in a clear way what Endo is and why it is, and what can be done about it.  Also there is a lot of info online about endo but the main thing to remember is Dr.'s really shy away from this subject as its something they dont know about.  Google endometriosis specialist in your zip code and see if anything comes up.  You might have to travel to go to a good one, but going to a specialist is better than running around in circles getting iffy opinions etc.  

    Otherwise, I hope its not Endo and is just constipation smile

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    • Posted

      Hello. Thank you for your response. I am on Depo (birth control shot) and have been for several years. I got on this shot because my periods were always irregular and very heavy so I chose to stop them entirely. Occasionally, when my shot is due I will have some bleeding and cramping (which I hate because I feel horrible). This all started a month ago and has only gone away for a few days and out of nowhere it comes back. I don't go everyday. I go about every other. The DR today, as rudely as ever said that isn't normal for someone my age and I need to eat better. Okay, that IS normal for me. I have always gone about every other. Everyone's body is different. And who's he to tell me what's normal, anyways? (sorry, ranting lol). But I have never had these symptoms before. It seems like my lower left side always is aching. For the most part, it's very tolerable but I tell ya when it flares up and gets worse, oh boy do I feel it! I've been told in the past I have had ovarian cysts but they must've been small and nothing to worry about since nothing was done about them. I told the DR today I have had some pink blood while wiping but he never touched base on that. And I noticed in my ultrasound, the nurse left the pictures on screen while she left the room so I could change, there was red and blue spots in one of the frames as well as under it is said 5 cm. Would that signify I had a 5 cm cyst? Or is 5 cm just the size of the stick? I don't have any kids. I never have had the ultrasound (the stick that goes inside you) before.
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    • Posted

      Hi April

      I'm 61, probably had endometriosis from the gitgo when heavy, painful periods started at 10. Since reading this site, I've come to think I probably got through school and most of college because I went on '60s-strength birth control pills at 16. Ultimately I had a total hysterectomy at 27, followed with hrt. Was tapering that off to almost nothing when, boom! Endometriosis Strikes Back! 27 years later. Had to have a section of my colon removed, thanks endo.

      I also was chronically constipated, though I wouldn't admit to any such thing then. When I was 13, I ended up at the proctologist. I had complained to my mom of a stomach ache. She started quizzing me and I figured out it had been 3 weeks since my last b.m.

      Same thing happened at 24, a few months before endo made it's first appearance ,,, as rectal bleeding and endless diarrhea. I chalked up the constipation to having just started law school (which causes a vast array of health problems, lol).

      I tell you this because I hope it will help you hear me when I say this: For many many healthy folks on earth, 2 or 3 b.m.s daily is normal. You can have b.m. every other day and still be constipated. Docs aren't wrong on this, and a simple exam lets them know whether you're constipated. For the health of your intestine, it is vitally important that you get yourself more regular. Trust me, it will help at least a little. It will also make it easier to know when something is new/wrong, and since endo so often manifests through the gut, knowing what's normal is important. Doctors will blow you off if you discount their valid suggestions about maintaining gut health, become defensive about constipation, or maybe are unsure when you last went #2. If you have endo, you will have a difficult road with the medical profession (unless you're lucky enough to

      get in with one of the few specialists who are also decent with their patients). To avoid giving them a chance to miscategorize you, as in "27 year old woman is constipated, denies it, hypochondriac who wants me to find expensive diagnosis when all she needs is to get regular."

      I wish that someone had gotten through to me in my 20s, 30s, or 40s that there was nothing to be gained by becoming defensive about being constipated -- and much to be lost by keeping my body in that condition. It might have saved me several sigmoidoscopies and 20 colonoscopies.

      I do hope that your pain eases. If you don't want to change your diet, there are many teas, tasteless fiber mixes, and stool softeners. Laxatives are not a good habit, but are okay very occasionally.

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    • Posted

      The thing is, I don't eat that bad. I really don't even eat that much. I'll eat breakfast and dinner with an occasional snack in between. I will say that I don't drink as much as I should. I drink when I am thirsty and i am not usually thirsty very much. Breakfasts for me usually consist of either waffles, toast, bagel...if I wake up really hungry. More often than not I wake up mildly hungry and eat a banana or yogurt just as a snack. Then I don't really eat anything until 8 hours later. I get blaoted very easily and I have to basically not eat a lot in order to keep the bloat down. Around dinner time I will eat a salad, chicken, pizza, pork. Sometimes I go out to eat but I always am sure to have a side of fruit or vegetables. I have GERD (acid reflux) so I can't eat much pastas, or fried foods. That is what I don't get. I have even tried Exlax and magnesium citrate and both things did not have the effect that I was told they would have. The nurses said I would want to make sure I was home all day. Well, I had 2 BM's both small and not diarhhea like they made it sound like. I drank more water and tried exercising more for a month to see if that helped any and it didn't. I still had trouble going. It has become a very frustrating thing and I dread going because it hurts and usually has little to no result.
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    • Posted

      Hi April

      I forgot to mention that both times I went a month without passing stools, I was still on the incredibly healthy diet my family ate. However, I was under extreme emotional stress both times, which happens to be one of the things about our guts -- they're very sensitive to stress. This includes the stress of worrying about regularity! We didn't have stool softeners when I was 13 so I was advised to develop a habit of having both cold and hot drinks first thing in the morning, alternating sips. We lived in a hot climate & I told doc that there was one sure way to put me into a bad mood and that was to force me to drink something hot when it was 80°F, 100% humidity at 7 a. m. But I did it and it helped me for decades.

      It sounds to me as tho perhaps your system needs more food going through it more frequently throughout the day. Every dietitian I've been forced to see in the last 10 years would say that one can't break the night's fast on a banana or an (American 6 oz) yogurt, fat free, full fat, Greek or otherwise. If you're in the UK, yogurt is probably packaged differently. 350 calories with most of that being protein and fiber is what they consider minimum. Can you not also at least eat 2 cups of dry salad mid-day also? This would give your system something to work on without causing bloat

      Docs here would recommend stool softeners over those laxatives, and they would recommend patience (& not to worry). There are also senna-based teas. As to US stool softeners, my experience since losing that section of colon to endometriosis is that generics here can't hold a candle to plain dulcolax. There are also all those fiber mixes and miralax.

      And everyone would recommend at least 40 ounces of non-alcoholic liquids throughout the day. Unless you're under 5' tall that's a bare minimum. You're not eating enough food to count any of that toward the 40 oz,

      Look around and see what you want to try. You will walk a long tightrope with docs if you have endo. Because mine always made its most dramatic appearances through the bowel, I've spent my life arguing with docs who want to label me as having IBD - so that they can categorize me and then forget me. I don't have that disease (and am thankful for that) so I've always had to be able to express exactly what goes on with my gut in order to demonstrate what the deviation is. Most everyone with endo fights to get heard and cared for.

      I hope some of this helps even if it's just the suggestion to avoid worrying about your gut!

      Take care

      Aitarg

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  • Posted

    Hi april14718, I went through all tests except MRI wth IV contrast which eventually explained my symptoms. MRI test was showing I'm having deep pelvic endometriosis, the implants even extended into my retum. I also have endometriomas on both ovaries and disffuse adenomyosis. Now I'm scheduling a surgery to remove things. So ask your doctore to give you a MRI with IV contrast. It was the only way discovered my problems before a laparoscopy. CT/Abdominal Ultrasound/Transvaginal sonogram/Colonscopy/Endoscopy/Urine test/Blood test all turned out to be clear when I cried for my pains! Wish you the best!
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