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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!

Forgot to add - I have some articles on this condition - scroll back through the posts as I have left my email addie a few times - if anyone wants some info drop me an email. (use a subject that lets me know you are from this board so you don't get deleted as spam). This board is getting so much bigger - now taking ages to load in my browser! Unfortunately seems that's a sign of how many of us there are living with pain.

I have been having pain on my right side for at least two years now. I have had 2 c-section and one other surgery using the same scar. After seeing many doctors and hearing different opinions I got lucky and saw a pain management doctor. She said she tought it was a neuroma in the scar of the c-section. She sent me to a plastic surgeon and she also agreed that was probably what was causing so much pain. I will be having surgery next week. Basically a neuroma is a bunch of nerves stuck together. She will attempt to either separate the nerves or she will remove it. She told me that I may lose feeling in my tigh. I am ok with that because I have suffered enought already. I hope this helps some of you please check it out. The way the pain doctor did it is to inject the spot that was sore with some pain medication wait awhile and asked me if I felt any pain. I said no and that's how she came to that conclusion. I think it's worth a shot for some of you out there who are suffering.

EMMAH- I WOULD LOVE TO GET THOSE ARTICLES BUT I CAN'T SEEM TO FIND YOUR EMAIL ADDRESS. COULD YOU PLEASE RE-POST IT. ALSO, DOES ANYONE HAVE THIS SAME PAIN THAT RADIATES TO YOUR LEG OR LEGS? I HAVE DEVELOPED MANY SPIDER VEINS DURING AND SINCE PREGNANCY AND THE PAIN IS VERY INTENSE AROUND THE AREAS OF THE VEINS. IT ALWAYS SEEMS THAT WHEN MY PAIN ON MY SIDE IS AT IT'S WORST IS WHEN MY LEG WILL ACHE INTENSLY. I CAN'T DETERMINE IF THE TWO THINGS ARE ASSOCIATED OR NOT. I WAS CURIOUS OF ANY OTHERS HAVING THE SAME PROBLEM. WHEN I HAD MY SECOND SECTION I WAS TOLD I DID HAVE ADHESIONS AND SHE REMOVED WHAT SHE COULD. HOWEVER, SHE WOULD NOT TOUCH MOST OF IT BECAUSE OF THE WHOLE "IT ONLY CAUSES MORE" ISSUE. ACTUALLY, I CAN'T FIND A DOCTOR WHO WILL DO SURGERY FOR ADHESIONS. ANYONE ON THIS FORUM KNOW OF A DOCTOR IN THE ATLANTA, GA AREA THAT HAS ANY KNOWLEDGE OF INCISIONAL ENDO?

I have not read all of your responses, however, I had a large endometrioma removed Feb 2005. It had grown into my abdominal wall and it too required a patch/screen. I had no problems, until about a week ago. I am certain that I have another one. My first one hurt for 2 years, but it was about 4 years post c-section. This is pretty common...but STILL physicians have not clue about them!! My surgeon in Houston Texas was very familiar with them and diagnosed it on my first visit. I just elected to wait for the removal until I could not stand it anymore. The pain was cyclical just like the rest of you! It was especially bad if I sat up, or used the ab muscles during the time of the month that it burned. I encourage people to have them removed, because my surgeon said that all lumps have the potential of changing into something more serious. Not usually with endometriomas, but they can. He also said that during removal you can NEVER be sure that all of the cells are removed. They can crop up again and again. The reason that I got the endometrioma was because at delivery it was discovered that I had moderately severe endometriosis (I had no idea) and of course during a c-section blood is everywhere. Those cells just attach where ever and begin growing, and it if often around the section scar area.

emmaREMOVE@REMOVEbendys.com Use the above email address, removing the words "REMOVE"

Hi there, I would just like to share that --- rest as much as possible and love yourself. Get some " calendula and Comfrey" in a salve and after awhile start to put that on your scar-- where the st_tches were. I think it really takes almost a year for total healing from a C-section....I mean they cut and pull and tug .... but, you need to use your own intuition regarding your body. I f it is your second, then you are also bust with your other responsibilites and your other child. Again, I say take it easy as pie because laundry can wait and so can house cleaning! Gwenyth

Brigitte what you say about endometriomas recurring is correct for regular endometriosis, which you say you were diagnosed with at the time of delivery. For women who do not have a history of endometriosis prior to their C-section recurrence is highly unlikely following surgery. Incisional endometriosis does not usually spread, nor recur like regular endometriosis so if you have surgery and the emdometrioma is totally removed you most likely will not have more problems with endometriosis. This is why surgery is one of the best options for those with purely incisional endometriosis - unfortunately for you Brigitte your case is not quite the same.

Hi! This message is particularly for Brigette. I too had a large incisional endometrioma removed and my abdominal fascia repaired with mesh. This was in April 2005. Things were going OK until about a month ago. I'm pretty sure mine has returned also, but this time on the right side, not the left! How long before you noticed you were having pain again, and was it in the same place? I'm booked to see my specialist and booked for an ultra sound next week! Here we go again. Has your specialist mentioned that you might have to have a total hysterectomy? I'm 40 yrs, so it's not going to interfere with my childbearing hopes and aspirations or anything, but still its a pretty major surgery. To everyone out there...incisional endo is becoming more and more prevalent! Get on those M.D.s and demand that they investigate thoroughly! Thanks

Hello All, Just wondering, I see a lot of the posers on this board got second opinions when their regular doctor wasn't helpful. Can anyone tell me how you found the doctors for the second opinions? I am wondering if there is a site that would recommend doctors that know something about incisional endo. THIS IS my pain time!! Couldn't sleep last night from the burning in my left side and pain in my lower back. I tried to prop pillows under me everything. I finally took 800 mg of Ibuprofen and I finally was able to go to sleep. thanks for listening. As you know from all my posts I live 10-15 days of the month in terrible pain starting with day one of my period. YUCK!! thanks and I hope everyone is feeling better!! Lori

Hello all! I finally have a surgery date! Hooray!!! I go for my surgery on feb 9 that's this Thursday! I never thought that I would be this excited about getting surgery done but if it means pain relief it's worth it. I will post to let you all know how it went as soon as I feel up to it. wish me luck and good luck to you all as well! Sooner or later doctors are going to have to accept that incisional endo is a real problem! What ever you do don't give up!

Hi Robin, I was Thinking about you today and wondering if you went in for surgery yet. Keep us posted and best of luck to you!!! Lori

I went to the OB Oncology GYN Surgeon that I was reffered to this past week. He agrees that this is most likely Incisional Endometrioma. In fact I want to thank everyone on this board. Had it not been for you I might still not know what is going on. Yesterday my menstral started and of course I am bowed over in pain. I can't wait to get the surgery. I am going to try and schedule it this week. However, I want to ask a few questions that you might be helpful with. 1) Did you have your surgery during your painful time? Mine starts on the cycle and last month last about 15 days. Or did you wait until the breathing period as I call it?? 2) A few of my instructions post op was a)no leaving the house for 7 days b) no driving for at least 3 weeks c) no liftting anything over 20lbs for at least 4 weeks. Anyone else have to do this with children? Okay, well this about makes me disabled seeing that I have 14 month old who weighs about 27lbs. Which is fine I will get as much help from family and friends etc...but I need to time this whole thing right then. He also told me about a 95% success. Which is worth it. Also, does anyone know as the result of this was it sloppiness on the doctors part? I am just curious. Okay, well I will let you all know when I get my surgery scheduled. Thanks again!!

HI Nicole03 - I can tell you what my recovery was like. My incisional endometrioma was fairly deep, but still in the abdominal wall. The surgery took four hours, they had to cut out a chunk of fascia and then repair it with mesh, but I was still able to go home four hours after I woke up. I actually did pretty much stay in the house for about 5 days. Went back to work at 8 days, and felt really good at 9 days. Day 2-4 really sucked, but not more than the original c-section. I kept pain medication to a minimum. I started driving at day 8 (I think its like with a c-section - you just have to be relatively pain-free and feel like you could move quickly and fully if necessary). And yes, I wasn't supposed to lift anything over 10 pounds for 6 weeks, which makes caring for kids difficult. My youngest was older, though (22 months), so I just started making her walk a lot more than usual. I would definitely recommend trying to stick to the lifting restrictions as much as possible. I went back to the gym at 8 weeks and started to do some lower abdominal work and it did NOT feel good! Needless to say, I stopped. As for the success rate, that sounds right based on my reading - basically, IF they get all the cells, it shouldn't come back. As for sloppiness, I think that's the theory, though I seriously doubt any doctor would tell you that. The theory is that they don't "irrigate" (i.e., wash out) you well enough before they close you up after a c-section, so some of the cells from the uterine lining get left behind. Good luck with your surgery. I am now two and a half months post-op and feel GREAT!! Totally worth a week of pain and discomfort. Oh, one more thing - I don't think it really matters what time of the month you get it done. I can't even remember when I had mine done. Bottom line is, you'll have pain during recovery regardless, but you won't have the usual pain because the tissue is gone. Good luck.

Suzanne, Thanks for the reply. Wow, yours took 4 hours?? The surgeon told me it would take about 25 minutes. Though he did say he was going to have to take out some area of the wall? And he did mention mesh the first time I spoke with him. He is the most highly regarded surgeon in his specialty in the area and even he admitted he has never personally seen this type of problem yet he was aware of it's existence. He explained the process to me how he would cut it out and the area surrounding it. He also wasn't sure if he would keep me overnight but thought I would most likely go home. But that will TBD. I am not so worried about the recovery. Nothing could be as bad as everything that has already taken place. The pain I am in today is unbearable. I will most likely take a vicodin and sit on the couch. Even though all that does is relax me some. Thank god it's Saturday! I am just getting more angry becasue nothing was right with my pregnancy, Ryan was so ILL when he was born and I am still suffering. I read one of the above posters said she is angry about the things she missed during her little ones first year. This is what is really angering me. All the things I don't do becasue of the pain. Suzanne, i am so glad that you are pain free now. I will pray that you stay that way! Thanks!

Hello everyone. I had my surgery to remove my endometrioma but unfortunatly I dont have alot of info about it. The doctor didnt come talk to me after the surgery. What I do know is that it took approx. 1 hr for the surgery. It is quite painful right now, 2 days post op. I am hoping by next week to be able to say that I am great. I have 3 children 2, 3 and 5 it is a little difficult caring for them thank god for family to help. Anyway I am going to lay down for a while. I will post again when I have more information and hopfully it is all good!