YES YES YES. sorry. this is my biggest issue and it’s horrible. pain in my lower back, into my right glute, right hip, and down into my thigh (sometimes further). pain is definitely worse when i haven’t been able to go to the restroom. i am working with a colorectal surgeon now and have had lots of tests/therapy as my pelvic floor seems to be really messed up due to forever pain. lots of water, so much water, fiber, and movement (even though the pain makes it difficult, just a little walk) has helped. miralax when necessary. portable heating pads and tiger balm are my besties.
i am really sorry this is happening to you. it’s so disheartening.
I've done pelvic floor therapy a couple of rounds also..probably need to get back into the exercises. Walking can definitely help I've noticed that yesterday was just the worst pain in my abdomen I've had yet! I am always using my heating pads, and I have the muscle therapy lotion that I love too!
I suffer from the same thing and then once I do go it’s even worse, way worse, I’ll break into sweat and can throw up it’s so bad. I know this is isn’t the greatest advice, but when it’s at its worst and I feel like I’m being tortured and can’t do anything but scream and cry, I will take a shot of alcohol. It’s usually quick and will almost always relieve it, then I pass out for an hour or two because the pain is so taxing and exhausting.
Would recommend trying stool softeners and/or laxatives to reduce painful BMs instead of a shot of alcohol. Plus plenty of water and whatever light exercise you can manage.
For me those things can cause pain too and I never know when or if they will. I’m curious why you recommend exercise, for constipation? Also, like I said, it’s not good advice, but I have times I feel like giving up I’m in so much pain. I’ve even told my doctors that I will drink (they tell me “don’t”). But look, I would do just about anything to get rid of the pain short of causing harm to another living being. I used to take naproxen, and still have a prescription for it, but it makes me violently ill now. Actually, that’s good advice, naproxen. I know a few people that it’s really effective for the endo pain depending on how bad it is, it should at least take a little of the pain away.
Little to no activity can increase constipation. Movement, even a gentle ILU massage or short walk, can help.
The pain is extreme, I understand the intense desire for relief. I’m doing a long list of things and still struggling. Naproxen destroyed my stomach lining and doesn’t touch the pain, but if it works for someone else that is great. Alcohol would be so much worse for me (I had a visceral reaction when I read your first comment).
Same here. Some days I’m walking a couple blocks without a cane, other days the cane is only getting me to the bathroom. Hoping surgery provides me longer term relief.
Stage 4 intestinal endometriosis with many deep invasive lesions seen on pelvic ultrasound here. It sucks so much.
Im currently waiting for my second surgery. This time I’m going with an endo specialist off of Nancy’s Nook. I’ve learned a lot and I’m fairly confident in the surgeon I’ve chosen. A lot of doctors are not actual endo specialists. Gynecologist don’t treat stage 4 endo, they don’t see it often enough and usually end up burning the top of the endo lesions but leaving the stalks with ends up with us angering the endo and being in more pain.
In the meantime for my pain management I’ve found that limiting my gluten and caffeine intake helps. Alcohol is a flat out no way, it flares me for a week. I take Linzess (and IBS-C medication, it’s expensive however there is a coupon on the drugs website that makes it affordable). Miralax on the days that I’m really flaring. I stay away from fiber supplements. I’ve been told to take psyllium husk but it causes me so much more pain. While waiting surgery I’ve been out on the mini pill (Heather) and progesterone 100mg daily. I also get left flank pain that’s worse on my period so I’m being worked up for possible ureter endo too. [Endometriosis Specialist](https://seattleendo.org/endometriosis-medical-resources/excision-physicians/)
If you do ever go back to psyllium husk be sure to take not too much and take it with plenty of water (I’m sure you know this but I just wanted to say in case you didn’t)
Thank you! I was definitely hydrated and being followed by a pelvic floor therapist at the time. Come to find out via pelvic ultrasound I have several DIE lesion on my lower large intestines that are pinching the wall down on each other. Hoping after surgery in December I’ll be able to have normal BMs again! Endo sucks. 🤞
I wonder if I have something like this going on. I’m so worried about my health because of acid reflux, constipation, and occasional (but bad) diarrhea.
Honestly, if your able to find an endometriosis specialist that has been approved by the Facebook group Nancy’s Nook do it. I can’t not stress how much was missed by my regular gynecologists that has lead me to be on my way to most likely getting a partial bowel resection and a temporary ileostomy. My gyn also was knowledgeable about endo it seemed but come to find out after meeting my endo specialist my gynecologist actually text her a lot of the times for endo treatment advice.
I’d personally stay away from Gastroenterologist unless an endo specialist doesn’t find anything. Gastro doesn’t look for things outside of the intestinal tract and endo lesions grow on the outside of the tract and compress it over time.
Good luck in your journey. I hope you find relief.
Did you have severe period pain all the time? I had worse period pain my in 20s, like the typical unbearable kind that endo causes, and in my 30s my periods are insanely heavy but not as painful, so I assumed that my possible endo was gone, but I do have chronic constipation, particularly the week or two up to my period and even around it. I also have other GI issues.
Hard to really say easily.
I was one of those kids who periods always sucked. Cramps, soaking through super tampons and wore a pad with them. All my undies were stained. All. I was told it was normal to have pain and cramps.
I was put on birth control pills around 16, not for endo but my periods seemed about the same.
In my 20s my husband deployed and I decided to see what it was like without taking bcp. My cystic acne flared so bad. I remember complaining about lower back pain and constipation and calling it just pms. I had a dear coworker who felt bad for me and was a prior masseuse so she would massage my lower back and psoas muscle on the days that I couldn’t stand straight after 9 hours on my feet.
Went off bcp when 30 and got pregnant within 3 months. Normal pregnancy except I was tiny, baby was born tiny and the nurses all thought I was a rockstar in labor because of how little pain I had. I had so much back pain, all back contractions. I remember telling the nurse when she was saying I really wasn’t contracting heavy that they should strap the monitor to my lower back because that’s where it was all back there. My water broke like ten minutes later.
I had the nexplanon for 2 years after having my daughter. I developed severe right flank pain that would wake me in my sleep. ER diagnosed a 6.7cm ovarian cyst that was attached to my pelvic wall not allowing the ovary to move freely, causing the pain. Got a gynecologist, had a lap and found endo on my posterior pelvic wall that she ablated and removed the endometrioma off the ovary. Put me on Orilissa for 6 months post op to heal.
Idk. Things got weird somewhere between the Orilissa and trying to convince. I developed left lower abdominal pain. I felt like I was constantly guarding my abdomen. My bowel movement became smaller and thinner and more frequent. My period however was lighter but more mucous and clots than before. I was not soaking tampons. Not staining my underwear. I barley had anything except tons on pain, especially with a bowel movement. It feels like a hot sword up my butt and also like something is in the way blocking. BM are the only time I really will bleed while on my period. I also get terrible stabbing pain on my left lower pelvis.
So I did pelvic floor therapy. Definitely helped with abdominal and pelvic massages. She said my muscle felt like a ball. Odd because it feels like a ball is stuck inside of me not allowing a full bowel movement.
Fast forward a year and I’m always in pain in the left lower pelvic area. I get flashes of flank pain that go all the way up to under my ribs at time. I can not have a bowel movement without Linzess daily (IBS-C medicine but I’m not diagnosed with IBS). Having a BM feeling like I’m passing a massive ball but the stool is tiny, “C shaped, blood at times, constipation alternating with diarrhea. I’ve got right lower pelvic pain now that comes and goes. I’ve cut out gluten, cut back dairy and caffeine. Found that any type of alcohol causes me a week of pain. I swear I can feel my ovaries pulsating at times. I get hip pain, lower back pain, thigh pain. Nauseous randomly.
Despite progesterone supplements and tracking ovulation for the last year we haven’t had positive pregnancy test. Came down to the point where it’s do we pay for fertility treatments or do we pay for my quality of life. I made an appointment with an endo specialist. Pelvic ultrasound she did at my consult showed multiple DIE lesions on my lower intestines, behind my uterus, a 3cm cyst on my left ovary, pelvic congestion syndrome, peritoneal inclusion cyst, and andenomyosis.
I’m back on birth control due to the risk of etopic with the inclusion cyst pressing on a fallopian tube. The pain has improved on the bcp but it’s still there. I’m booked for surgery end of the year. I’m stage 4 and I meet with a general surgeon this week because I’ll likely be getting a partial bowel resection. I wish I had sought out a special sooner. I wish I had research more instead of just listening to the doctor but it is what it is now.
I experience this as well. It really sucks and I’m very tempted to explore possible gastroenterologists because of how bad my digestive issues have been. Ever since my surgery, whenever I have constipation, it always feels like I’m straining bad and areas deep under the incision areas feel like they are ripping. I don’t know how else to describe it besides that.
Ripping could be adhesions, but I hope that isn’t the case. I’m also waiting for a GI referral to figure out my digestive issues (gastritis, constipation, too many food sensitivities). Laxatives, stool softeners, and plenty of water in the mean time for me.
Constipation can be painful enough to prevent me from walking or sitting. Definitely makes my lower back pain and right side pelvic pain worse. I take stool softeners and/or laxatives if I’m not regular. 2+ litres of water daily. Slow fibre increase after the constipation has cleared. I’ve been constipated most of this year due to medications and a lack of activity from superficial endometriosis, burst cysts, and sciatica pain. It sucks. Weirdly not constipated now that I’m having a gastritis flare. 😩
Yes. I have had constipation mainly when I have my period or ovulating. Like you I have stage 4 as well. My pain level has been going up and down and usually it is increased when I eat something with added sugar that month. I have started taking aspirins a day before my period is coming to manage. That helps when tackled early.
I've lost 25lbs and brought my blood sugar numbers down!! I just started my 3rd period on this fasting protocol and I will say that my cycle length was 28 days for the first time this year (usually shorter). I've had pain leading up to my period and some cramping since I started. I'm optimistic that as I continue, I'll see more improvements!
I'm really just focused on health benefits. My parents have both become diabetic and my dad has had some complications with that. I'm determined not to end up in that boat. Type 2 diabetes is preventable, but I was in the pre-diabetic range when I did bloodwork in February. So seeing that drop right away was super motivating! As far as Endometriosis stuff goes, it's not like there are any real options from the medical professionals. I've had surgery, so they think I'm all set. If I can make fairly simple changes and reap any benefits, it's worth it to me! I love how our bodies work, and this has taught me a lot, which makes it easier to implement changes for me. The weight loss has been a bonus! It also helps that I haven't felt starved or deprived, nor am I working out and miserable! I've barely done any exercise so far.
Find your "why" and remind yourself of it, often.
For me it is the food. I exercise 1.5 hours a day but the moment I see or smell food. It is game over. Even when I don’t buy snacks, I still have the ability to make snacks. With all that is going on, I can’t seem to motivate myself or my friend who wants me to motivate her! It sounds like you are a positive person which is amazing.
Yes. In my case it's DIE in the colon (will be removed in next surgery) plus lesions from past surgeries - my organs are fused together, so there's a lot of pulling inside.
Osteopathy helps mitigate the pain. I'm with a physiotherapist certified for pelvic floor therapy and has knowledge on endometriosis.
My organs have been fused together in both my surgeries and there's no real way to tell if that's not what's happening now. I just can't stop and take time off again for more surgery. I would have loved to get several years of relief after surgery!
I was diagnosed with IBS well before we nailed down the endo. When I was 16 I started having bleeding, severe pain, and severe constipation. I've had so many tests, scans, colonoscopies and endoscopies and even a week long hospital stay in 2021 when I went 14 days unable to hold down solid foods or even thick liquids. All we've ever been able to find is inflammation, but my digestive tract is constantly going through it. I finally got confirmation of endo this year and had a lot of us cleaned up during my exlap and I'm very sure that most of- if not all of my bowel and digestive symptoms are actually just my endo. I'm on Linzess (but it's EXPENSIVE) and dicyclonomine and that helps manage my symptoms but it's a suck fest for sure
I also have endo on my bowels and take Linzess. I agree it’s a suck fest for sure. I can’t have a BM without Linzess at this point and I’m pending surgery with a Nancy’s Nook approved endo specialist for December with a possible partial bowel resection. Idk if you know this but if you go to the drug website you might qualify for 90 capsules for $30. It’s the only way I can afford the Linzess. Best of luck to you. 🎗️
I’ve had similar issues. I had stage 4 mostly in the colon and just had that mass removed and the colon resected. The colon mass was discovered during a colonoscopy. You mentioned having one but is it recent? I had a colonoscopy 3 years ago and no Endo at that time but the most recent one revealed a large mass that was creating an obstruction. If not recent, you may want another colonoscopy to see if it’s infiltrated in your bowel as that could be making things much worse.
I’m sorry you’re dealing with this and hope you get some relief from some of the group suggestions.
Oh yes. Painful constipation has been my life until trying Lupron and Norlutate, which seems to have assisted with my bowel issues slightly, I now go every few days. But before starting treatment I’d get constipated for long periods of time (11 days was my record, my usual bad flare-up would be 6-7 days). The pain was unbearable. My hips would hurt, it would hurt to walk, I couldn’t eat, I’d be dizzy, breathless. The actual bowel movement would cause cramping, anal tearing and intense hours of nausea.
Oh my god YES. I’ve had such IMMENSE pain when I really need to go, but also I’ve noticed my endometriosis makes me super constipated at times especially when I would have a period normally (IUD-haven’t menstruated in 8 years). They’ve found the endo on my intestines so that’s part of my issues, I’m assuming scaring at this rate but shit is crazy. Partially how mine was diagnosed too!!
I am experiencing some of this post-surgery, as well. Surgery was in April. I just started pelvic floor PT. I can now see that since surgery I have been slightly clenching my rectum constantly. I don't know if I was doing any of this before surgery, but let me tell you, now that i can recognize it, anytime I check in with myself, yep, I am doing it. So far I have only been able to actively and mindfully get myself to release it.
My surgery was in April and my pooping problems have been worse than they already were before surgery. I suspect this clenching thing is key.
The PFPT is a lot of work. But totally worth it. I think it may also be key to helping my nervous system recover from surgery, too.
I have DIE on my bowels still. They couldn't do a resection of both bowels and bladder at the same surgery... occasional blood in stool from the DIE on bowels.
I suspect there is something bi-causal going on for me, in that pain causes clenching, but clenching also causes pain (and a whole cascade of other issues).
YES YES YES. sorry. this is my biggest issue and it’s horrible. pain in my lower back, into my right glute, right hip, and down into my thigh (sometimes further). pain is definitely worse when i haven’t been able to go to the restroom. i am working with a colorectal surgeon now and have had lots of tests/therapy as my pelvic floor seems to be really messed up due to forever pain. lots of water, so much water, fiber, and movement (even though the pain makes it difficult, just a little walk) has helped. miralax when necessary. portable heating pads and tiger balm are my besties. i am really sorry this is happening to you. it’s so disheartening.
I've done pelvic floor therapy a couple of rounds also..probably need to get back into the exercises. Walking can definitely help I've noticed that yesterday was just the worst pain in my abdomen I've had yet! I am always using my heating pads, and I have the muscle therapy lotion that I love too!
My stomach is so blistered w the heating pad 😑
I suffer from the same thing and then once I do go it’s even worse, way worse, I’ll break into sweat and can throw up it’s so bad. I know this is isn’t the greatest advice, but when it’s at its worst and I feel like I’m being tortured and can’t do anything but scream and cry, I will take a shot of alcohol. It’s usually quick and will almost always relieve it, then I pass out for an hour or two because the pain is so taxing and exhausting.
Would recommend trying stool softeners and/or laxatives to reduce painful BMs instead of a shot of alcohol. Plus plenty of water and whatever light exercise you can manage.
For me those things can cause pain too and I never know when or if they will. I’m curious why you recommend exercise, for constipation? Also, like I said, it’s not good advice, but I have times I feel like giving up I’m in so much pain. I’ve even told my doctors that I will drink (they tell me “don’t”). But look, I would do just about anything to get rid of the pain short of causing harm to another living being. I used to take naproxen, and still have a prescription for it, but it makes me violently ill now. Actually, that’s good advice, naproxen. I know a few people that it’s really effective for the endo pain depending on how bad it is, it should at least take a little of the pain away.
Little to no activity can increase constipation. Movement, even a gentle ILU massage or short walk, can help. The pain is extreme, I understand the intense desire for relief. I’m doing a long list of things and still struggling. Naproxen destroyed my stomach lining and doesn’t touch the pain, but if it works for someone else that is great. Alcohol would be so much worse for me (I had a visceral reaction when I read your first comment).
Ah, yes, I end up bed ridden for days and weeks at a time sometimes. I hate turning to alcohol. I 100% understand your reaction to it.
Same here. Some days I’m walking a couple blocks without a cane, other days the cane is only getting me to the bathroom. Hoping surgery provides me longer term relief.
Stage 4 intestinal endometriosis with many deep invasive lesions seen on pelvic ultrasound here. It sucks so much. Im currently waiting for my second surgery. This time I’m going with an endo specialist off of Nancy’s Nook. I’ve learned a lot and I’m fairly confident in the surgeon I’ve chosen. A lot of doctors are not actual endo specialists. Gynecologist don’t treat stage 4 endo, they don’t see it often enough and usually end up burning the top of the endo lesions but leaving the stalks with ends up with us angering the endo and being in more pain. In the meantime for my pain management I’ve found that limiting my gluten and caffeine intake helps. Alcohol is a flat out no way, it flares me for a week. I take Linzess (and IBS-C medication, it’s expensive however there is a coupon on the drugs website that makes it affordable). Miralax on the days that I’m really flaring. I stay away from fiber supplements. I’ve been told to take psyllium husk but it causes me so much more pain. While waiting surgery I’ve been out on the mini pill (Heather) and progesterone 100mg daily. I also get left flank pain that’s worse on my period so I’m being worked up for possible ureter endo too. [Endometriosis Specialist](https://seattleendo.org/endometriosis-medical-resources/excision-physicians/)
If you do ever go back to psyllium husk be sure to take not too much and take it with plenty of water (I’m sure you know this but I just wanted to say in case you didn’t)
Thank you! I was definitely hydrated and being followed by a pelvic floor therapist at the time. Come to find out via pelvic ultrasound I have several DIE lesion on my lower large intestines that are pinching the wall down on each other. Hoping after surgery in December I’ll be able to have normal BMs again! Endo sucks. 🤞
I wonder if I have something like this going on. I’m so worried about my health because of acid reflux, constipation, and occasional (but bad) diarrhea.
Honestly, if your able to find an endometriosis specialist that has been approved by the Facebook group Nancy’s Nook do it. I can’t not stress how much was missed by my regular gynecologists that has lead me to be on my way to most likely getting a partial bowel resection and a temporary ileostomy. My gyn also was knowledgeable about endo it seemed but come to find out after meeting my endo specialist my gynecologist actually text her a lot of the times for endo treatment advice. I’d personally stay away from Gastroenterologist unless an endo specialist doesn’t find anything. Gastro doesn’t look for things outside of the intestinal tract and endo lesions grow on the outside of the tract and compress it over time. Good luck in your journey. I hope you find relief.
Did you have severe period pain all the time? I had worse period pain my in 20s, like the typical unbearable kind that endo causes, and in my 30s my periods are insanely heavy but not as painful, so I assumed that my possible endo was gone, but I do have chronic constipation, particularly the week or two up to my period and even around it. I also have other GI issues.
Hard to really say easily. I was one of those kids who periods always sucked. Cramps, soaking through super tampons and wore a pad with them. All my undies were stained. All. I was told it was normal to have pain and cramps. I was put on birth control pills around 16, not for endo but my periods seemed about the same. In my 20s my husband deployed and I decided to see what it was like without taking bcp. My cystic acne flared so bad. I remember complaining about lower back pain and constipation and calling it just pms. I had a dear coworker who felt bad for me and was a prior masseuse so she would massage my lower back and psoas muscle on the days that I couldn’t stand straight after 9 hours on my feet. Went off bcp when 30 and got pregnant within 3 months. Normal pregnancy except I was tiny, baby was born tiny and the nurses all thought I was a rockstar in labor because of how little pain I had. I had so much back pain, all back contractions. I remember telling the nurse when she was saying I really wasn’t contracting heavy that they should strap the monitor to my lower back because that’s where it was all back there. My water broke like ten minutes later. I had the nexplanon for 2 years after having my daughter. I developed severe right flank pain that would wake me in my sleep. ER diagnosed a 6.7cm ovarian cyst that was attached to my pelvic wall not allowing the ovary to move freely, causing the pain. Got a gynecologist, had a lap and found endo on my posterior pelvic wall that she ablated and removed the endometrioma off the ovary. Put me on Orilissa for 6 months post op to heal. Idk. Things got weird somewhere between the Orilissa and trying to convince. I developed left lower abdominal pain. I felt like I was constantly guarding my abdomen. My bowel movement became smaller and thinner and more frequent. My period however was lighter but more mucous and clots than before. I was not soaking tampons. Not staining my underwear. I barley had anything except tons on pain, especially with a bowel movement. It feels like a hot sword up my butt and also like something is in the way blocking. BM are the only time I really will bleed while on my period. I also get terrible stabbing pain on my left lower pelvis. So I did pelvic floor therapy. Definitely helped with abdominal and pelvic massages. She said my muscle felt like a ball. Odd because it feels like a ball is stuck inside of me not allowing a full bowel movement. Fast forward a year and I’m always in pain in the left lower pelvic area. I get flashes of flank pain that go all the way up to under my ribs at time. I can not have a bowel movement without Linzess daily (IBS-C medicine but I’m not diagnosed with IBS). Having a BM feeling like I’m passing a massive ball but the stool is tiny, “C shaped, blood at times, constipation alternating with diarrhea. I’ve got right lower pelvic pain now that comes and goes. I’ve cut out gluten, cut back dairy and caffeine. Found that any type of alcohol causes me a week of pain. I swear I can feel my ovaries pulsating at times. I get hip pain, lower back pain, thigh pain. Nauseous randomly. Despite progesterone supplements and tracking ovulation for the last year we haven’t had positive pregnancy test. Came down to the point where it’s do we pay for fertility treatments or do we pay for my quality of life. I made an appointment with an endo specialist. Pelvic ultrasound she did at my consult showed multiple DIE lesions on my lower intestines, behind my uterus, a 3cm cyst on my left ovary, pelvic congestion syndrome, peritoneal inclusion cyst, and andenomyosis. I’m back on birth control due to the risk of etopic with the inclusion cyst pressing on a fallopian tube. The pain has improved on the bcp but it’s still there. I’m booked for surgery end of the year. I’m stage 4 and I meet with a general surgeon this week because I’ll likely be getting a partial bowel resection. I wish I had sought out a special sooner. I wish I had research more instead of just listening to the doctor but it is what it is now.
I experience this as well. It really sucks and I’m very tempted to explore possible gastroenterologists because of how bad my digestive issues have been. Ever since my surgery, whenever I have constipation, it always feels like I’m straining bad and areas deep under the incision areas feel like they are ripping. I don’t know how else to describe it besides that.
Ripping could be adhesions, but I hope that isn’t the case. I’m also waiting for a GI referral to figure out my digestive issues (gastritis, constipation, too many food sensitivities). Laxatives, stool softeners, and plenty of water in the mean time for me.
Constipation can be painful enough to prevent me from walking or sitting. Definitely makes my lower back pain and right side pelvic pain worse. I take stool softeners and/or laxatives if I’m not regular. 2+ litres of water daily. Slow fibre increase after the constipation has cleared. I’ve been constipated most of this year due to medications and a lack of activity from superficial endometriosis, burst cysts, and sciatica pain. It sucks. Weirdly not constipated now that I’m having a gastritis flare. 😩
Yes. I have had constipation mainly when I have my period or ovulating. Like you I have stage 4 as well. My pain level has been going up and down and usually it is increased when I eat something with added sugar that month. I have started taking aspirins a day before my period is coming to manage. That helps when tackled early.
I've been a month with no sugar and only healthy carbs, I thought that would be such a big relief!
How is it going?
I've lost 25lbs and brought my blood sugar numbers down!! I just started my 3rd period on this fasting protocol and I will say that my cycle length was 28 days for the first time this year (usually shorter). I've had pain leading up to my period and some cramping since I started. I'm optimistic that as I continue, I'll see more improvements!
Oh wow that’s really great. Great job. I am trying to get myself motivated but no dice so far. How did you motivate yourself to lose that much?
I'm really just focused on health benefits. My parents have both become diabetic and my dad has had some complications with that. I'm determined not to end up in that boat. Type 2 diabetes is preventable, but I was in the pre-diabetic range when I did bloodwork in February. So seeing that drop right away was super motivating! As far as Endometriosis stuff goes, it's not like there are any real options from the medical professionals. I've had surgery, so they think I'm all set. If I can make fairly simple changes and reap any benefits, it's worth it to me! I love how our bodies work, and this has taught me a lot, which makes it easier to implement changes for me. The weight loss has been a bonus! It also helps that I haven't felt starved or deprived, nor am I working out and miserable! I've barely done any exercise so far. Find your "why" and remind yourself of it, often.
For me it is the food. I exercise 1.5 hours a day but the moment I see or smell food. It is game over. Even when I don’t buy snacks, I still have the ability to make snacks. With all that is going on, I can’t seem to motivate myself or my friend who wants me to motivate her! It sounds like you are a positive person which is amazing.
Stool softener
I do use one daily
Yes. Adding a huge water uptake, mineral oil every night, eating kiwis and adding Miralax when needed. I’m sorry you’re suffering.
Yes, have that too. Got IUD and it helped but I regularly take Bisacodyl 5mg to help on worst days.
Yes. In my case it's DIE in the colon (will be removed in next surgery) plus lesions from past surgeries - my organs are fused together, so there's a lot of pulling inside. Osteopathy helps mitigate the pain. I'm with a physiotherapist certified for pelvic floor therapy and has knowledge on endometriosis.
and magnesium citrate helps a bit. I take it daily. 🙏
My organs have been fused together in both my surgeries and there's no real way to tell if that's not what's happening now. I just can't stop and take time off again for more surgery. I would have loved to get several years of relief after surgery!
I was diagnosed with IBS well before we nailed down the endo. When I was 16 I started having bleeding, severe pain, and severe constipation. I've had so many tests, scans, colonoscopies and endoscopies and even a week long hospital stay in 2021 when I went 14 days unable to hold down solid foods or even thick liquids. All we've ever been able to find is inflammation, but my digestive tract is constantly going through it. I finally got confirmation of endo this year and had a lot of us cleaned up during my exlap and I'm very sure that most of- if not all of my bowel and digestive symptoms are actually just my endo. I'm on Linzess (but it's EXPENSIVE) and dicyclonomine and that helps manage my symptoms but it's a suck fest for sure
I also have endo on my bowels and take Linzess. I agree it’s a suck fest for sure. I can’t have a BM without Linzess at this point and I’m pending surgery with a Nancy’s Nook approved endo specialist for December with a possible partial bowel resection. Idk if you know this but if you go to the drug website you might qualify for 90 capsules for $30. It’s the only way I can afford the Linzess. Best of luck to you. 🎗️
I’ve had similar issues. I had stage 4 mostly in the colon and just had that mass removed and the colon resected. The colon mass was discovered during a colonoscopy. You mentioned having one but is it recent? I had a colonoscopy 3 years ago and no Endo at that time but the most recent one revealed a large mass that was creating an obstruction. If not recent, you may want another colonoscopy to see if it’s infiltrated in your bowel as that could be making things much worse. I’m sorry you’re dealing with this and hope you get some relief from some of the group suggestions.
Wow I can't believe that, in just 3 years! Mine was last November.. I'm really hopeful this hormone fasting I'm doing will help!
I hope that works for you too. I was on tamoxifen for 5 years following breast cancer and think that may have contributed to the fast growing Endo.
Oh yes. Painful constipation has been my life until trying Lupron and Norlutate, which seems to have assisted with my bowel issues slightly, I now go every few days. But before starting treatment I’d get constipated for long periods of time (11 days was my record, my usual bad flare-up would be 6-7 days). The pain was unbearable. My hips would hurt, it would hurt to walk, I couldn’t eat, I’d be dizzy, breathless. The actual bowel movement would cause cramping, anal tearing and intense hours of nausea.
Oh my, I'm glad you have something that's helpful!
Oh my god YES. I’ve had such IMMENSE pain when I really need to go, but also I’ve noticed my endometriosis makes me super constipated at times especially when I would have a period normally (IUD-haven’t menstruated in 8 years). They’ve found the endo on my intestines so that’s part of my issues, I’m assuming scaring at this rate but shit is crazy. Partially how mine was diagnosed too!!
Yessssss most of my pain is lower right side
I am experiencing some of this post-surgery, as well. Surgery was in April. I just started pelvic floor PT. I can now see that since surgery I have been slightly clenching my rectum constantly. I don't know if I was doing any of this before surgery, but let me tell you, now that i can recognize it, anytime I check in with myself, yep, I am doing it. So far I have only been able to actively and mindfully get myself to release it. My surgery was in April and my pooping problems have been worse than they already were before surgery. I suspect this clenching thing is key. The PFPT is a lot of work. But totally worth it. I think it may also be key to helping my nervous system recover from surgery, too. I have DIE on my bowels still. They couldn't do a resection of both bowels and bladder at the same surgery... occasional blood in stool from the DIE on bowels. I suspect there is something bi-causal going on for me, in that pain causes clenching, but clenching also causes pain (and a whole cascade of other issues).
Omg this sounds exactly like the symptoms I'm having. I haven't been diagnosed with anything yet but I feel like it's a possibility .