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

I had a c-section in May 2000, and a myomectomy in Dec 2003. since the myo I have had increasngly worsening cyclical pain in the left of my abdomen. It starts on Day 1 of my cycle and continues through to about day 14. Its sharp, and feel likes someone has placed a scouring pad on my insides and is twisting it around. The nerve endings on the outside of my abdomen are raw, and even a cotton sheet drives me to distraction when it rests on it. When I move it feels like I am about to burst my st_tches....if I had any!!!! I am now having 2 periods a month, i am very anemic and awaiting a referral to the gynae here in Oz. I had a laparoscopy in Oct 2004 in the UK - fab gynae said I had extensive adhesions. Lap has done nothing to relieve the pain. I have been waiting 6 months as a semi urgent case here in Oz. They have said I am not likely to get an appointment within the next 2 months. We are in the middle of a doctor crisis here sadly. I am not sure how much longer I can cope because I am in sooooo much pain. I am exhausted and in constant agony. My GP suggested i get the Mirena fitted to deal with the anemia, but cos of my medical history it would have to be done under a general anaesthetic. ( i saw a gynae privately and she almost sprinted for the hills). I was less than confident of her abilities as a result. HELP someone, please.

yes i am getting the same symtoms . i have been to my doctors about 5 times now,i went for a scan about 2 weeks ago and now i have to go and see the gyno. i have only the one tube and overy and i am having a lot of trouble with heavy bleeding .the doctors put me on norethisterone,which iv been on for about 3 months now and nothing as happened.

I had my baby 4 months ago and developed an infection 5 days post c-section.I am still having pain on the left side as well. My doctor says he feels it might be a nerve trapped in the healing scar tissue.I have asked a OB-GYN and she says the same thing. Anyone know what can be done for this?

OMG!!!!!!!!!!!!!!!!!!!!! I am sitting her in tears, trying to read past them I was so lost untill I found you all. I had a transv c-section 4/02 and a 2nd 4/05. since 11/03 I have had this pain that started only on my right, it came about early in a pregnancy (lost the baby shortly after) the last pregnancy I reported the pain again to my OB she dismissed it as my overweight/baby issues. the pain did leave for a short time. but again since june I have what is now very severe pain that has escalated to both sides, I describe it as tight almost burning and if I could reach through my skin I could grab it I feel like its my ovaries. I had a mri,ct and ultra sound the mri and ct revealed a "ma__s" but nothing specific. so I was told the ultra sound would be the correct test. It came back neg. now Im lost, on most days it can get up to 7, and more the longer I sit some days 10, but like I heard here the MDs just dont seem to think its that serious. agh thanks for anyone who helps. We are in this together

Hi Summerrae. I have pain on my right side after c-section done 2 months ago. I know it is something I have torn from doing too much too soon. In fact I'm going to get checked out today if I can get a ride to emergency. (I can't stand seeing work to do and nobody doing it that is why I shovelled the walkway after recovering only 3 weeks.) I have had 3 laporoscopy scopes if it offers any comfort to you,recovery is much sooner than with a c-section.(depending of course on what they find) Good luck with that and don't do what I did,just ask for some help. If Hubby won't do what ever it is fast enough for you pull out the names of his friends from the phone book and ask them. That will get him moving.Oh I should explain about the scopes. They were done over the course of ten years due to endometriosis not because of c-section complications.

Hi, This is a breath of fresh air to see this forum. I am so sorry for everyones pain!! Chronic pain is something none of us should have to live with. It seems nobody I talk to understands the kinda of pain I have been having since my c-section 14 months ago. Mine started the instant I came into recovery...burning on the left hand side. However, that did resolve after a few weeks....but moved over to the lower right side and it hasn't disappeared since. It is something that comes and goes. No rhyme or reason that I can totally put my finger on(stretching and exercise)...but when it comes it stays for about two weeks - I can feel the lump inside. And it feels as if someone is giving and Indian burn on your insides. It will eventually reside for about a week or two then pop back up. I have been to the ER and to the OB. I just had a cat scan and a ton of blood work done about two weeks ago. All the cat scan showed was a "knot" marble sized of scar tissue. No clear offer of a resolution to the problem. Try to ma__sage it. How am I suppose to do that when it burns when I move??Told me they could surgically remove but no gurantee that it wont' come back. I am making an appointment this week for a second opinion. Is it just me or is this chronic pain ruining your day to day life?? It is a struggle just to change my sons diaper becasue any sharp move I make the burning sensation just makes me bawl. My moods are nasty and I feel depressed becasue I am not up to my usual self. My patience is near non-existence. I feel bad becasue I should be taking my son on walks etc...and it is a struggle just to do anything. Please feel free to email me if someone else is going through the same thing. I was HOPING I did have a hernia becasue at least I knew they could repair it and the pain would go away. Brubeauty03@aol.com Nicole

After reading some more of your posts. It does boggle my memory now that the pain this month really flared up on the 12th the first day of my period. I guess I never thought to put two and two togther. Because the area is always sore or sensitive. It isn't entirely flared up all month long. Though now I am over 10 days from the 12th. Will be interesting to see what happens when my cycle finishes out. Thanks for the bit of hope. Also something to mention that my cycles have been coming two days earlier each month now. There should be a support group for this matter. I also didn't mention that none of the meds given (vicodin and IB profin) do anything to subside the pain. It is more a sleep aid and I don't want to become dependent on anything.

I found this forum today because I was looking for information regarding endometriosis around a c-section incision. I've had three c-sections (4/98, 5/00 and 8/03). I started having pain in my right abdomen/pelvic area at least 1.5 yrs ago but it has become increasingly worse. I met with my OB/GYN last week for my regular pap and I mentioned the pain. During the exam he said he thought it was endo around the incision but I need to go back in a couple of weeks when I have my period because he can better tell at that time. He could definitely feel something on my uterus (and it was painful when he pushed on it). If, after I see him in a couple of weeks and he is more confident that is what the problem is, he wants to perform laparoscopy and cut the endometriosis (is that what it is called) out, st_tch me back and up voila! Is it really that simple?! I just cannot believe there are so many women out there with this pain! It sounds much more common than I would ever imagine! I had no idea that it was even a complication of c-sections and I am a little ticked off about it (mad at myself for not being better informed and mad that it has happened to me). I had a terrible time with my last c-section. I felt like I was burning up on the table, I fainted the day after surgery and I had a hard recovery. I was hoping to never ever have surgery again! (sounds childish, I know, but it was terrifying). I had no problems with my other 2 c-sections and my current ob/gyn performed the 2nd and 3rd ones. Anyway, it is nice to know I am not the only one! Thank you for sharing your stories! Best wishes to you all!

Nicole03 - Take a look back through the forum and read the posts from me (Suzanne) and emma and see if any of the things we say make sense. Your symptoms fit mine to a T, and I am happy to say that my surgery to remove the incisional endometrioma has been a total success (2 months post-op now). I understand the debilitating pain - an "Indian sunburn" is a perfect descriptor! I would recommend that you find a doctor who is at least willing to entertain the idea of incisional endometrioma. I'll also add that for me the only thing that made any difference whatsoever with the pain was very high doses of Aleve combined with Tylenol(ask a pharmacist or doctor what a high, but safe, dose is). Good luck.

Pez - Check out my post on November 30, 2005. That was nine days after my surgery, and I gave a ton (probably too much!) of detail. If you do have endo, I can tell you that the surgery was TOTALLY worth it. And yes, I too had major reservations about undergoing surgery when that was what caused the mess in the first place. I had an MRI first to figure out exactly where it was, and then my doc went back in over my c-section scar. General anesthesia, but out the same day. Recovery sucked for a few days (though not nearly as bad as a c-section), but I was literally feeling great after about 8 days. I have absolutely no pain now, ever. If you ahve more questions after checking out my other (lengthy!) posts, let me know. I'm happy to share what I know, in the hopes that other people can get RID of their pain!

Suzanne, Thank you so much for your post. I went back and read your post on Nov 30. Your experience encourages me that perhaps my pain will be gone after I have surgery (once it is confirmed). I am so glad that you are pain-free! Makes me feel good to know too that my OB/GYN was able to pin-point it right away. I am fortunate that way. Thanks again! I will post an update once I have more information.

Wow... and I thought I was alone... during my stay at the hospital having my 2nd c-section I was in sooo much pain. I stayed there for 7 days after I had my son and didn't want to leave, but I was forced out because they couldn't find a reason for the pain. For the next few months I had increasing pain in on my left side. The pain was not on my scar, it was around my left ovary. It got to the point that I couldn't raise my hands over my head, lay on my stomache, or even wear a belt. When I went to the dr., scar tissue was brought up as a possible culprit, but I was told it was too soon. During this time i was also having problems with bowel movements, and urination. I had a colonoscopy and many uti tests, all showed nothing wrong. After a year of the pain, my dr. suggested a laparoscopy. I decided to go through with it. They found adhesions that surrounded my uterus, bladder, colon, and stomache and adhered it all to my stomache. After the surgery I felt so much better, until about a year later. I started having the same pain, just not as bad. My dr. told me to wait until the pain got as bad and then she would do the surgery again. Well, I've since moved out of state and of course, cannot have the same dr. Well, the pain is now very bad again. I'm having the same problems with going to the bathroom. Having trouble laying on my stomache. At times, it hurts when I step on my left foot. So, I went to a new dr. I told him about my problems and he said to wait until it got worse. But he said he wanted me to seriously consider having a hysterectomy. He said if I didn't, then most likely I would have to have surgery every 3-4 years to remove the adhesions. But, since the adhesions were on my uterus, colon, bladder and stomache, will removing my uterus cause the adhesions on the rest of my organs stop?? It just doesn't seem like it would be effective to remove my uterus when the adhesions are not just on my uterus?? Has anyone else had the same problems and received a hysterectomy? And if so, did it help the problem? I'm only 27 and I'm not sure if I'm done having kids so I don't want to jump to have a hysterectomy when it won't solve the problem...

i've had 2 sections and both the surgeons worked on opposit sides, my last section they worked from the left side, and i find i get more pain on the left and it is more swallen than the right side

Suzanne, Thank you for your response. I tried to print this page out so I could read it thourghly and take notes but haven't been able to get a full page even with cute and paste. I will review all of your posts. My husbands impression was that my OB thought I was making up this pain in my head. My latest step was going to my regualr physican this week. Obviously, he had never heard of incisional endometrioma but he said that it could be possible and reffered me to a more "experienced" OB as he put it. I received a call back from him and he is actually a surgeon who specilizes in different pelvic cancers. I asked him if he has heard of incisional endo and he said "Yes" -- but he has never personally seen it. He also indicated he would take it out. However, I have to wait until the 7th to see him. He is out of town next week. So, I will keep my fingers crossed. The pain in somewhat residing but is still sharp today. It started again on the 12th the first day of my menstral cycle. So, I can only hope and wonder if this is what I have. It is apparent that there is not that much information out there on incisional endometrioma but I am printing whatever I can find to take with me to the doctor. Let me provide you with more backround information about my case and pregnancy. Becasue you never know if there are others with similar experience. I allegedly was an undiagnosed gestational diabetic - I would spill sugars in my urine each week but my blod tests were negative. I was also edemic and had high blood pressure which my reg phsican told me was preclampsia. Which I was also not diagnosed with. I gained 117lbs during my pregnancy. I started at 117lbs and ended at 234lbs. Ryan was born by cesarian with two surgeons present. 20 minutes later he started having seizures. He was transffered to another hosptial with a state of art NICU> Two days later it was found through MRI that he had a pre-natal stroke. Then another week it was found through ultrasound and confirmed by MRV that he had clots present in his veins in his brain. He was then transsfered to Childrens of Chicago who anti-coagulated him -- It was also found he had Kidney Reflux, a PFO (which isn't normally a risk-however he had a clot present between his heart and lungs which could have resulted in pulmonary embolism) Lucky to say as of today. Ryan is a healthy, develomental and phisically healthy besides a little reflux being present. We were exteremely lucky. Becasue of Ryans medical issues at birth you can imagine I was more active than I should have been. So, all of the pain I have had I thought was result of slow healing and scar tissue. As I was told by my OB. I should also mention that he was a 10lbs 7 oz baby at birth. As soon as I was wheeled into recvoery I had TERRIBLE burning pain. The worst pain I have ever felt in my entire life. This was mainly on the left side. It took several weeks and the pain finally subsided. I constantly had to have an ice pack on my stomach to alleviate any of the burning. Low and behold this pain started in my right side of the abdommen. I wish I could remember the first time I felt it but as memory serves it has been intermintent since I had him 14 months ago. I am so angry right now at everything about everything. I just want the pain to go away and I am coming to terms that surgery is the only way this is going to happen. But I also have the fear that this is going to be delayed due to the fact there is not much information out there. And the underlying fact of worry that they wont get all of it in the surgery. Out of curiousity. Has anyone here on the board found a doctor in the Chicagoland area to do this surgery?? Possibly Evanston Northwestern??? It would be great if we could from a network of doctors that know this issue so it can be diagnosed and treated as quickly as possible- so that we can resume our normal lives. Thanks for listening and I will update when I know more. Nicole

Nicole03, sounds like you have been very proactive with your doctors - many of the ladies on this board have had your experience of being told there's nothing wrong and come away feeling they weren't believed. Ladies if you believe from the information on this list that you might have incisional endometriosis go to your doctor prepared with information. Don't be afraid to suggest this condition to the doc yourself and show your info - there is so little information about this condition and it seems most OB/GYNs have little-no knowledge of it. If you aren't getting help from your OB/GYN get a referral to a general surgeon. Good luck with your appointment on the 7th Nicole03, sounds like you could do with a break!