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I had surgery about 4.5 yrs ago to remove a fibroid....since then I have had a dull...sometimes stabbing pain on my lower left side just about where my hip bone is. I also had a section 22 months ago and now have another pain located lower. I have had an ultrasound and they told me there was nothing there that would cause me any pain that they could determine. I have been examined, poked, prodded everything...they have come up with nothing. My OBGYN figures that it is an adhesion or ligament damage. Not that I wish this on anyone but I am so glad I found this website. I had convinced myself that I was crazy and it must all be in my head!

I had my second c-section 4 years ago. About 6 months after my c-section I started having severe pain in my lower stomach on my left side where my insicion was. I have had a surgery to see if I had an insicional hernia and there was none. This was done about 1 and a half years after my c-section. I have seen 4 OBGYNs, 3 doctors, a doctor who wanted to do a coloynoscopy, and i have went through 2 surguries. My last surgury was 6 months ago and it was an endoscopy. the doctor told me i was one of the worse cases of scar tissue he ever seen. the doctor was almost positive this would relieve my pain, the fact is, it is now worse. I am only 26 years old and have come to the conclusion that my pain is something I am going to have to live with the rest of my life.When I came to the web site and started reading all of these answers from women all over, I started to cry. I thought i was the only one and it is sad to know there is alot of women going through the same as i am going through. Why can't a doctor figure out what is going on to help us and stop thinking we are hipocrits and we are losing our heads or saying things to get attention when in FACT there is really something wrong! I feel like I am a guinee pig because the doctors tell me to try this drug and that drug. I am to young to be taken or trying all this different kind of nerve medicine, pain medicine, or surgury after surgury. I am no longer trying anything because i feel like nothing is going to work and all i am hurting is myself more and more. i hope and pray every day for myself and others who are suffering with me. good luck to all of you. If you have any advise please let me know.

Just an update (and maybe some hope for others) - I am now about seven weeks post-op from surgery to remove an incisional endometrioma in my abdominal fascia that was essentially caused by my c-section surgery. I have been 100% pain free since recovering from the surgery, and am SO glad I made the decision to go ahead with it. My surgeon was excellent, and I am so thankful that he took me seriously and was sharp enough to think up the correct diagnosis himself (because it is supposedly fairly rare). Anyway, for those with postoperative pain that no one can figure out, I've been there and am thrilled to say that my pain is gone. Good luck to all of you - I hope you too find answers.

I have been struggling with this abdominal pain for about 6 mths. I have been seen by 6 doctors and have gotten 5 different answers. I've been told I have a hernia, scar tissue, a nerve bundle, adhesions and that it was all in my head. I have had u/s, cat scans, blood drawn, and been poked and proded over and over again. I have also had nerve blocks done 4 times(they stuck a big needle in my stomach to try to freeze it). Tomorrow I find out when my surgery date is, my doctor has now decided that it is incisional endometriosis. I am not convinced he is right, he is the doc that said it was a nerve bundle and did the nerve blocks, but I figure if he goes into take it out we will know for sure what it is. so, wish me luck and I will keep you all posted!

Since my Sept. 20th posting, I have had surgery to remove a tennis ball sized endometrium in my c-section scar. If you have pain in this area and have had a c-section, do not go undiagnosed!!! Doctors say that incisional endometriosis is rare, but maybe it isn't that rare if they would just start listening to their patients. It obviously happens more than they are willing to admit! I am almost pain free, with the only exception being muscle pain from the surgery. It was so large that it left a large hole in my abdominal muscle that needed to be reinforced with surgical mesh. It took my 6 years to get a doctor to listen to me, so never give up!! Life is too short to be in that much pain!!!

SO glad to hear everything is going well post-op Suzanne - you give hope to lots of ladies here besides me I'm sure! Will be in touch privately - things have been so busy over the Xmas and summer break for me!

I know it has been awhile since you posted Nikki, but you asked about adenomyosis. Due to those necessary but damaging c-sections, I had a bladder stuck to my uterus, bowel adhesions and adenomyosis so severe I literally had labor contractions with my periods every 21 days. This sounds gross, but when you have the most severe cramping, shortly afterwards do you pa__s (GRAPHIC!!!) what looks like slabs of liver? I did and it looked like someone had been murdered in my bathroom and in my bed during these monthly horror stories. I had so much pain and heavy bleeding from that that my poor husband would actually wake up with blood stains on HIM because we had bumped into each other during the night. Well, my doctor sent me to a really hip OB/GYN and she did a vag u/s and said I needed a hysterectomy because she couldn't move my bladder and upon the "other" exam she couldn't move anything there indicating pretty advanced scar tissue. My pathology report showed that I had scar tissue on m ovaries, my colon, my uterus and bladder of course, my tubes and my cervix. Ick. I am MUCH happier each month now, but I miss my parts sometimes and don't like having to take Estrogen everyday. But c-sections do that and it is a risk I can't believe some women take on purpose. Hope you all find the solutions to your pain, it is not a great way to live and you are ent_tled to some answers and relief. Some women on other forums have stated my situation is unique because I had 4 sections in 4 years, but that is not the story I got from my doctors. Some people over-heal with even one surgery which is great for bleeding wounds and fractures, but not so good for major abdominal surgery. Good luck!

Hello All, I have posted so many times and I feel bad for each and every person here. I was , after extensive tests and no findings was basically told to go on birth control ( can't cause I smoke) and also to consider pain pills. I take about 1200 mg of ibuprofen a day ten days a month. My pain starts immediately with my period and is so sore it hurts to walk and I am so tired and drained from this. I am exhausted for ten days a month. I am an at home MOM but if I had to go to work those days I don't know how I would do it??About ten -twelve days after my period the pain DISAPPEARS??? The pain feels like I had a c-section yesterday even though I am two and half years post op with my second c-section. I also bloat up like crazy. My periods are also irregular for the last six months, which my doc also ignored. The pain is in one spot on my left side, lower ab. Help does anyone know why this happens? Does this happen to anyone else. I know you all have pain but why does anyone have the pain that disappears and comes back every month? I am at my wits end with this. Thanks, Lori ps I have had this pain since june2005

Lori, I too am having the same left side pain. My doc just told me it was incisional endo. I have to go for surgery to have it removed. I cant diagnose you but I would recomend asking your doc if incisional endometriosis is a possible cause to your problems. I hope you find help. I hope we all do!

Thanks Robin, My ob gyn said they ruled everything out gyno so they will a__sume it is ENDO. She suggested birth control and NSAID"S ( ibuprofen, Naproxen)She said if she goes in and operates it most likely will come back so I can basically have to live with it. I AM just so frustrated. She said ENDO as if it wasn't a problem and/or like I am making it up?? I hope you do well with your surgery!! Thanks for writing!! Do you also get pain that comes with period and goes with ovulation? Is this a sign of endo? My doc didn't seem to know why it comes with my period and subsides with ovulation?? I would love to know what causes it to be so painful from my period to ovulation? Well again, good luck with your surgery and I hope this brings to to a pain free world once again!!! Lori

Kriston - YES!! I'm becoming completely convinced that incisional endometriosis is much more common than most doctors realize (and, for the record, I'm of the opinion that there are likely few doctors that even know what this is or would think of it). I can tell you that the OB-GYN surgeon who removed mine (and, FYI, I am now 8 weeks post-op and am completely pain-free for the first time in two years) has many years as a faculty member and full professor at a very large, reputable University teaching hospital. He is chief of Ob-GYN, and no doubt has a ton of experience. He admitted to me (prior to my surgery) that he'd only done mayby two cases in his entire career. So, either it really is rare, or it is very underdiagnosed. I'm glad you were finally able to get answers and fix the problem. I'll add some rather detailed stuff here for people who might be interested - incisional endometriosis is quite different from regular endometriosis, in that it lies in the abdominal wall, not your "gut" cavity. The cells/tissue get there (in all likelihood) during surgery, NOT randomly as is the case with typical endometriosis (which IS in your gut/organs). The point of all this is that with a really good excision (meaning they take all the endo, plus some of the area around it), the likelihood of it coming back is practically nil. So, for those of us that have been properly treated and are pain-free, there's no reason to expect it to come back - ever. Now there's something to feel hopeful about!

yes, Lori I my pain comes and goes with my monthly cycle, that is why the doc finally decided that it is incisional endo. And he said that if they remove the area where the endometrial tissue has been growing I should be pain free, no more problems. It is caused by cells from your uterus getting stuck in other tissue during c-section, these cells respond to your hormones levels the same way your uterus does. And it continues to grow in size with each cycle. I will keep you posted on how my surgery goes...and Lori if your doc doesnt listen go to another one, I have seen 6 docs since my ordeal started, good luck!

Wow, six doctors. I wonder why this is so under diagnosed. My ob gyn just kept trying to stay away from the endo conversation. I wonder if that was my imagination or if there is a reason? Thanks for clearing the specifics up about incisional endo. There doesn't seem to be much info about it. from what you say it makes perfect sense down to the part of it actually feels like I am bleeding inside. That is so weird a period inside your body? Well I hope your operation is successful lord knows we would love to hear a success story!! BE WELL!!!! Lori

Lori, Yes my pain does come and go with my monthly cycle. That is why my doctor finally came to this conclusion. He was asking around to other doctors to see if they had any ideas. I have seen a total of 6 doctors before now, if your doctor doesn't take you seriously move on. You cant just accept it and live this way, eventually you will find someone to help. But dont give up, dont take no for an answer. I will keep you posted on how my surgery goes. wish me luck! and good luck to you!!!

Wow!! Good Luck!! Yes I will try other doctors. This pain is severe and I can't afford to live ten days out of the month in pain and exhausted!! Let us know how you do!! My prayers are with you!! Lori

Sorry, my last email was to Robin not from! Lori