Pregnancy Info HOME

Emma, Liza, and any others that may be able to provide some insight: I am currently 20 months post-c-section, with increasing pain that typically starts with my period, and abates shortly after ovulation. Based on my own reading of the medical literature (I too also conduct medical research in my career - PhD, not MD), my personal "differential" is nerve entrapment vs. incisional endometrioma. I have a GP and a GYN who are definitely taking me seriously. The latter would like to schedule surgery to open up the scar and remove the presumed endometriosis. My questions are as follows: What type of pain do all of you have with these two diagnoses? Mine is a burning pain, not unlike a terrible sunburn. Light touch (e.g., underwear, clothing) is the absolute worst stimulus. I also get shooting pains. These originate at the left end of my incision, and radiate out about three or four inches, and lately, down as far as my iliac crest. The pain feels very "external" to me. It does NOT feel crampy or dull or throbbing or deep. I do have swelling near this site, just above the incision, and this, combined with the cyclical nature, suggest incisional endometrioma. But, the doctor says the intensity of the pain (as in, I am getting very desperate, and it affects my functioning and definitely my quality of life) and the larger radius are not consistent with an endometrioma (which leads to me to consider nerve entrapment). I think I'm going to suggest he try a.) a biopsy, and/or b.) hormone therapy, and/or c.) nerve block to try and sort out the diagnosis before I have additional surgery, seeing as that's what started this in the first place. I have confidence that my GYN is a good one, but even he admits that these complications are supposedly totally rare, and he has done few similar procedures. I work in an academic medical setting, and these are good, experienced docs who keep up with the medical literature. I'll stop now - would just be very interested in people's specific descriptions of their pain, as related to confirmed diagnoses of incisional endometrioma and nerve entrapment. Thanks much.

Suzanne - the pain you describe is SPOT on. Feels extremely supericial and to gentle rub finger over (or as you say, clothes friction) can be excrutiating at times. This is radial to the palpable endometrioma. I also have a burning-like pain if the endometrioma is palpated however that pain is more focussed. I do get pain down my leg however I experienced similar pain prior to kids with my period so I believe this is regular period pain rather than any nerve entrapment. The pain you descrive, and the cyclic nature, suggests to me it is more likely to be incisional endo. My review of Cochrane, MEDLINE and CINAHL pulled very few articles -let alone solid research! - but I would suggest surgery is the best option for you. Note that incisional endometriomas are not always located entirely within the pelvic area and laparaoscopy is not always appropriate for either diagnosis or surgical treatment. My endometrioma is located between the muscle and fat layer and would not have been diagnoses if my GYN performed those procedures. Exact location can be determined by U/S. I have a great general surgeon who took me seriously and basically I am waiting until either a) the pain is effecting my QOL or b) the timing is right in my life (eg babysitters, work related, can afford the tummy tuck to be done at the same time :-P ) before I undergo any surgery. At this stage I am quite OK using nurofen at the times it bothers me (and wearing softer trousers) but the surgery for me is relatively minor and healing time would be fast (nb the recurrency rate of endo a__sociated with C/section is extremely low). Professionally, I am a self-emplyed medical researcher with a gerontic nursing background basically performing meta a___lyses for various research groups. Feel free to correspond directly emma at bendys dot com use a subject line that alerts me to this list so you dont get deleted as a spammer!

I too have had the exact same pain and that starts with my period like clockwork and ends with ovulation and starts again, since June 2005. I am two years post op and had two c-sections. I went to the emergency room in June and they found nothing. my pain is , soreness and yes a sunburn is a good anology it also feel almost like an open wound on the inside thats bleeding. It is hard for me to walk and do physical activity even getting up out of bed is painful. I had two ct scans that reveal nothing and I went to my obgyn just last week. He thinks it is adhesions. He said there is no evidenece of anything other than that. It is just so strange that the pain completely goes away after about two weeks after my period? Does nayone know why? Why is it so strong for up to two weeks after my period? Doc says after he reviews my CT scans from the hospital he will take another pelvic sono to see if there is anything in my ovaries or uterus. He said if not Lapo is an option. He siad he does not think it is endometriosis? Any ideas? Lori

forget to mention - I had a core biopsy to diagnose exactly what my lump (its almost like a pet name now!) was. I have read that with core biopsy there is a risk of spreading the endometrial cells through the biposy tract. (I read this after I had already had one!) Besides just undergoing the knife there isn't any other method that can give complete confirmation of exactly what is there. Thus far 3mths post-biopsy (fingers crossed) I have noticed no increase in signs/syptoms so I dont think my core biopsy has had that effect.

Thank you thank you Emma and Lori for your replies! VERY rea__suring to hear other's description of their pain, and have it match mine. Emma, I'll be in touch. Lori, your symptoms sound exactly like those of an endometrioma. The cyclical nature, as far as I have learned, is because it is endometrial tissue (i.e., same thing that lines your uterus) that gets "seeded" or something like that during surgery near the incision (e.g., some "rogue" cells that don't get washed away, perhaps, prior to st_tching you up, and are then outside your uterus). This endometrial tissue reacts to hormones in your blood stream just like the lining of your uterus does (i.e, cyclically). Anyway, your symptoms sound just like mine, and like Emma said, the medical research in this area is spotty at best. Incisional endometriomas have something like a .2% incidence, I think (i.e., 2 in 1000 - lucky us, if that's what it is). It's entirely conceivable that your doctor just doesn't know what they are. I recommend you try other doctors till you find one who does know about it, or if your doctor is good, perhaps he/she will do some reading on their own, with prompting from you. And fyi, my pain is also debilitating for about 10-14 days, and has gotten worse over the past few months. Good luck, and keep us posted. This website was a terrific find.

Lori, I agree with Suzanne - what you have described sounds very much like incisional endo. As Suzanne said and has been reported over and over on this list by other women - most doctors have limited if any knowledge of this condition and do not consider it in their differential diagnosis. Laparoscopy is generally not useful as the endometrioma are usually outside the pelvic cavity that is visualised in the procedure. Ultrasound may or may not identify a ma__s but cannot reliably determine what it is. As Suzanne said, the reported prevalence of this condition is incredibly low, although it is likely this is contributed to by poor diagnosis in many women. If you need some medical articles to show your doctor (if he is open to discussion with you) I have a few I can pa__s on. email as in previous posts.

Hi Lori, I just wanted to say that I have the same pain as you it begins with my period like clock work and I may get about a weeks relief before my period again. I have a a CT scan which showed nothing, a viginal ultra sound that show nothing but, the dr. said it looked like my uterus could be enlarged and I had a incisional hernia which was corrected on 9/1/05 which he thought would help the pain. He has put me on IB pain medicine for pain which did not help. His next step is going to be lapo to go in and see if any organs are attached to anything. I am really tried of the pain like you said it hard to get out of bed to even sleep at night I have to sleep on my side basically I cannot rest on my stomach. Sometimes walking I have to lift up the right side of my stomach to relieve the pain. I just don't know what is happening.

Re Nellie - yes sometimes have good months with no pain at all, other months excruciating. Appears to be no identifiable pattern.

Hi - I too have a lump to the left just above my navel. 13 months after second surgery. Hurts to the touch feels like a malt chocolate ball. What to do?

Hi Cynthia and all, I tried to post three times yesterday and it kept losing my post. Oh well here I am. Yes, Cynthia I also hold my belly up for relief. I started to get the pain this morning when I woke up. Went to the bathroom and my period is here. A week early. Same thing happened last month( The pain started immediatley with my period) Does anyone know what adhesions have to do with your cycle? Why does the pain come with your period and end with ovulation? my doctors didn't answer that? He did say something about hormones but how can hormones cause pain? Now the next two weeks of my life is going to stink. I am so slowed down by this. Has anyone been diagnoses with adhesions? Had a Lapo? What is it like? Did you learn anything? Why doesn't this condition show up on any CTscans or ultrasounds? Love to hear from all. Sorry to hear about your hernia Cynthia, Hope it is feeling better since the op.

All our symptoms are so similiar but from what I read ( I am NO EXPERT) these are the things they could be. These things were all mentioned to me by my Doctors. Doc thinks mine is adhesions. 1.Adhesions 2. Incisional Hernia 3. Follicle Cyst 4. Endometriosis 5. Ovarian Torsion 6. Obstruction of the bowel caused by Endo These are with the exception of number 1 that my doctors thought I had and had none of them. Except for the Endo and adhesions. All can be confirmed and ruled out with your doc through tests and ultrasounds. Since all my tests came out great they are leaning towards adhesions. I would love to know more about them if anyone has had Lapo please let me know Lori These are all the things

Hi Lori and all, Iam being scheduled to have Lapo done sometime within the next month or two. My doc seems to the oversized uterus which show up on my ultrasound. hopefully when he does the lapo it will show my problem. He also, thought maybe adhesions. As I said earlier I had the incisional hernia surgery but it did not help my problem. Lori I will keep you posted and let you know when I will be having the Lapo done and let you know the outcome. Take care because I am hurting right this moment not as bad by next week I will feel real good and then by Nov 06, it will be back again.

Emmah, I think I talked too soon. I must be ovulating today, well it feels sore now anyway, right round my hip again, it feels like a 'st_tch', you know when you have ran too fast for too long, very bloated again. I was talking to my sister who I know had been diagnosed with a cyst on one of her ovaries a couple of years ago, and when I talked about it she said I sounded like her before. It turned out after several ultrasound scans, bowel tests etc, in and out of the emergency at Hospital for nearly two years, they eventually found the cyst 3x3 cm. It burst in the end, she had been put on medication. Strange thing was she had been trying for years to get pregnant and couldn't it seemed, until after this had burst on her . She is now due her second baby in January next. She has never had a c section, but she did have her apendix out.

I had my 2nd c-section 2 years ago and since then had a lump under my scar on the right side. The right side had always hurt and never felt like it healed right. I went to three different ob/gyn's in the past two years trying to figure out what was wrong. They all said it was scar tissue effecting the nerves or normal after two c-sections.I had more pain during ovulation and my period. It would feel like an open sore that was being touched- a burning pain. This summer my husband had surgery for a hernia and I rally liked his surgeon. I went for a consultation and he thought it was an insisional hernia. I had the operation last week to correct it. When he got in there it wasn't a hernia but a endometrioma. It has been one week since the operation and I have less pain now than before the operation. Totally worth it. My advise to anyone would be to see a general surgeon. I wasted two years with other doctors. THe operation is not bad especially compared to a c-section. My lump was between the muscle and fat layer just above the right side of my c-section scar.

I had my 2nd c-section 2 years ago and since then had a lump under my scar on the right side. The right side had always hurt and never felt like it healed right. I went to three different ob/gyn's in the past two years trying to figure out what was wrong. They all said it was scar tissue effecting the nerves or normal after two c-sections.I had more pain during ovulation and my period. It would feel like an open sore that was being touched- a burning pain. This summer my husband had surgery for a hernia and I rally liked his surgeon. I went for a consultation and he thought it was an insisional hernia. I had the operation last week to correct it. When he got in there it wasn't a hernia but a endometrioma. It has been one week since the operation and I have less pain now than before the operation. Totally worth it. My advise to anyone would be to see a general surgeon. I wasted two years with other doctors. THe operation is not bad especially compared to a c-section. My lump was between the muscle and fat layer just above the right side of my c-section scar.

I have the same thing - i had an emergancy c-section 10 years ago. When my pain started i was told it was my coil, then it was a hernia and finally I was told it is an endometrioma. I have having urgery in two weeks to have it removed. If i remember rightly I was told that it means some of my cells were sown into the c-section wound and as it has a blood supply it has developed into this thing. It is like a fybroid or cyst.