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.
Hi guys,
I have been diagnosed with Endo for a year now but had it much longer. I have a complicated couple years of being tossed back and forth from Dr to Dr. It all started 2 years ago with abdominal pain and intermittent non-cycle bleeding. I have also extreme cramps and periods since I was 15. I had ultrasounds because they thought it was my gallbladder/kidneys etc etc. They found an ovarian cyst. Got referred to a gynae who did a US (including an internal one.. boy was that fun) Unfortunately I am very narrow down there.. so couldn't get too far. He tried me on various BC pills. Came back with same pain but bleeding basically all month.
Had a Lap last summer which found a lot of Endo on my right side near my ovary and a lil on my left. He cut it out. He then put me on Cerazette double dose which did not help at all and infact made me blow up like a balloon. I went back and told him this and that I was still feeling pain down there. He said I would just have to live with the fact i'm always going to be in pain... not the most reassuring answer ever.
He changed me to Loestrin which I take continously. It's supposed to allow me to not have a cycle. First month I didn't have one. The next 3 months I had 2 periods every month! Now I haven't had one for 2 month. Keeping my fingers crossed.
In January I was also referred to a Gastroenterologist because they suspected I had Crohn's because of the extreme bowel symtoms. The Dr told me I had IBS and Chronic Fatigue Syndrome and prescribed me a whole list of drugs including antidepressants. I was relunctant but desperate at the same time so i tried it. No relief at all and the AntiDepressants made me feel like crap.
Changed Gastro's, saw a lovely woman who did a colonoscopy. The inside of my small bowel looked ok and therefore Crohns was ruled out. IBS was the definitive diagnosis because they couldn't find anything on the inside. Was put on other antidepressants to stop the pain. They helped a lil but made me feel pretty bad with all the side effects. During this time I was still having pelvic pain as well.
I came off the drugs a couple weeks ago and have noticed I am still in a lot of pain. Abdominal pain, pelvic pain etc. After having a chat with my mom because she had a UTI that turned out to be something a lil more severe, I realised the way my bladder works is not normal. It's hard to pee a lot of the time, I find I have to really push hard to empty, I go ALOT!, but never feel like i completely empty so I have to go again.
I have alternating constipation and diarrhea still. more constipation at the moment. I do not want to go back to my gastro because i don't believe the sole cause is IBS.
i have thought maybe it's my endo. Maybe all these symptoms are linked because they did not remove all the endo last time or maybe more as grown.(FYI - i am also constantly fatigued. constantly.)
if anyone has any advice that would be awesome. Or personal stories?
I am going to a new gynae next week because i do not feel my old one takes me seriously. he just tells me to take a combo of paracetemol and ibeuprofen every single day. i'd like to think that that might also cause a lot of problems with constant use of pain killers.
im at the point where i've tried all the gastro stuff including the numerous amounts of drugs.. did they help? No. So there has to be something else to the puzzle.. like endo.
Sorry about the super long post, I am just fed up. I have almost dropped out of university twice because of this and am going into my third year sept. O and my insurnace runs out in Sept so I need to get this sorted before the end of sept.
Phewwwww. :)
I have been diagnosed with Endo for a year now but had it much longer. I have a complicated couple years of being tossed back and forth from Dr to Dr. It all started 2 years ago with abdominal pain and intermittent non-cycle bleeding. I have also extreme cramps and periods since I was 15. I had ultrasounds because they thought it was my gallbladder/kidneys etc etc. They found an ovarian cyst. Got referred to a gynae who did a US (including an internal one.. boy was that fun) Unfortunately I am very narrow down there.. so couldn't get too far. He tried me on various BC pills. Came back with same pain but bleeding basically all month.
Had a Lap last summer which found a lot of Endo on my right side near my ovary and a lil on my left. He cut it out. He then put me on Cerazette double dose which did not help at all and infact made me blow up like a balloon. I went back and told him this and that I was still feeling pain down there. He said I would just have to live with the fact i'm always going to be in pain... not the most reassuring answer ever.
He changed me to Loestrin which I take continously. It's supposed to allow me to not have a cycle. First month I didn't have one. The next 3 months I had 2 periods every month! Now I haven't had one for 2 month. Keeping my fingers crossed.
In January I was also referred to a Gastroenterologist because they suspected I had Crohn's because of the extreme bowel symtoms. The Dr told me I had IBS and Chronic Fatigue Syndrome and prescribed me a whole list of drugs including antidepressants. I was relunctant but desperate at the same time so i tried it. No relief at all and the AntiDepressants made me feel like crap.
Changed Gastro's, saw a lovely woman who did a colonoscopy. The inside of my small bowel looked ok and therefore Crohns was ruled out. IBS was the definitive diagnosis because they couldn't find anything on the inside. Was put on other antidepressants to stop the pain. They helped a lil but made me feel pretty bad with all the side effects. During this time I was still having pelvic pain as well.
I came off the drugs a couple weeks ago and have noticed I am still in a lot of pain. Abdominal pain, pelvic pain etc. After having a chat with my mom because she had a UTI that turned out to be something a lil more severe, I realised the way my bladder works is not normal. It's hard to pee a lot of the time, I find I have to really push hard to empty, I go ALOT!, but never feel like i completely empty so I have to go again.
I have alternating constipation and diarrhea still. more constipation at the moment. I do not want to go back to my gastro because i don't believe the sole cause is IBS.
i have thought maybe it's my endo. Maybe all these symptoms are linked because they did not remove all the endo last time or maybe more as grown.(FYI - i am also constantly fatigued. constantly.)
if anyone has any advice that would be awesome. Or personal stories?
I am going to a new gynae next week because i do not feel my old one takes me seriously. he just tells me to take a combo of paracetemol and ibeuprofen every single day. i'd like to think that that might also cause a lot of problems with constant use of pain killers.
im at the point where i've tried all the gastro stuff including the numerous amounts of drugs.. did they help? No. So there has to be something else to the puzzle.. like endo.
Sorry about the super long post, I am just fed up. I have almost dropped out of university twice because of this and am going into my third year sept. O and my insurnace runs out in Sept so I need to get this sorted before the end of sept.
Phewwwww. :)
and welcome to ds. i have endo and i stay fatigued constantly. no matter how many naps or rest i get i never feel better. i took vitamin b complex and it helped tremendsly. also its good your getting another doctor. its better to get a endo speacialist who speacializes in excision surgery. excision has a better success rate of not coming back as fast. many women have been pain free for 5 years or more with excision surgery. also try the endo diet
http://www.carolynchambersclark.com/id44.html
i also heard that acupuncture works well as all organic foods and products. also vitamin e and omega 3 are good for inflamation,vitamin c for immune system, ginger for nausea and one thing that works wonders for me is an ice pack when im having a period or have any pelvic pain. also have you got your hormones checked?
sorry for the long post hope i helped
sabrina
I also study at a university, and I know how hard it is to deal with school when the endo keeps getting in the way . Yea, it's frustrating!!!That's cool that you have'nt given up.
Good luck to you. Take care,
Lovebyrd
i am also on a healthy diet. :)
i think I might need another lap done even though i had one a year ago. i have been going back and forth with drugs and colonoscopies etc and nothings come back with anything. i'm getting desperate, i can't live like this with the bowel and bladder problems and the pain. i can't even plan when the pain is going to be because my cycle is not monthly its all over the place so the pain is pretty regular.
can endo grow quite quickly? within a year? i really don't think they found all of it last time. i mean i've been on BC pills that havent done much apart from make my periods eratic.
thanks :)
i feel like such a joke because of all the tests that have come back for various other diseases like colonoscopies, blood tests etc etc. they haven't found a problem "like that". i went to my old gynae in October and said you know i'm having pain and he was like thats just something your going to have to live with. i dont think he believes in bowel endo either. so i'm going to try my mom's gynae who apparently is fantastic. i didn't realise all these bladder problems i was having wasn't normal. and certainly the pain and bowel problems haven't been. the only thing is i haven't been bleeding this month but still have the pain. is this weird?
i know it sounds stupid but if they found something that could be excised from my bladder and bowel that would be better then slapping on the label of IBS and not responding to any of the treatments. i've tried taken a disgusting amount of drugs for so called IBS that havem't worked. now back to square one. i'm sorry for ranting. i just feel so lost.
I started my periods when i was 10 years old, im now 18. For the first 3 years they were really bad..i didnt have one for 5 months before, i was told this is cos my periods are setting into a cycle, at 13/14 i was put on the pill for acne, it helped to regulate my periods and they were also lighter.
I used to get really constipated before my period and stomach cramping, i got told becos of this i have ibs.
I always seemed to need to pee alot! All the time..then other times i couldnt go even though i was bursting. Sometimes urinating and bowel movements on my period hurt, i also always get thrush..ive tried all waht the doctors gave me and i dont wear tight trousers etc on my period or near.
around 2 years ago sex sometimes was sore, i tried lubes..more foreplay that kind of stuff, no diffrence. i told the doctor it was a deep pain, i have to pee alot, i get constant period cramps too now and alot of back ache and i seem to be bloated. She told me i might have a std or water infection, did lots of urine samples and swobs, all came ack negative, still i ended up taking antibiotics for 4 weeks..never cleared up.
a couple months back i got a bout of diaherah, i thought i caught the bug, but after 3 weeks of it getting worst adn i was passing alot of blood not just on the tissue paper ut down the toilet the doctor asked me more quesitons i told her all what had been happening, and that i have left and right sided pain, she thought i had appendictis or inflmatory bowel diesease, i was put through as an emeergency at the hospital, nothing found.
i had done a food diary again no gluten or dairy the dr put me on a brat diet too, no diffrence.
For years i have black stools alot of the time near my period and soemtimes bleed from my bottom, i never knew this was anything to be worried about? poop is something you dont talk about. I got sent home being told nothing is wrong with me.
My period came, it was heavy, sore lasted two weeks, my blood was black and clumpey..i got this sometiems before too. My stomach symptoms then cleared up.
I now notice when my period cramps get worst my stomach plays up with it, no matter what i eat or drink. I went back to my dr saying im sick of being told ive got ibs treating that when something else is going on. i wrote down a list of symptoms ive been experiancing, after reading through and asking me questions he came to the idea that i have endo..he said bowel problems are a common thing with people with endo, and with my other symptoms hes pretty sure it cud be endo. My aunties have it too.
Since then ive done other food diaries etc, and went back to the docs as he wanted an update, he said he thinks i dont have ibs but endo i have a lump on my left side, when this enlarges (usualy near my period) i get sorer and then stomach problems.
I take BC pills, i used to run them together and this worked wel to keep them away for 2 months every time, now it doesnt work for me. xx
good luck hun