My Story

Iatrogenic Endometriosis a Cesarean Risk

I was just 30 years old when a complicated pregnancy led me down the path of a cesarean section delivery. What I thought was a common and safe practice has now left me with lifelong pain, a permanent disability, and over $200,000 in post-operative medical costs. Through my painful journey, I discovered the many risks of cesarean deliveries and uncovered a serious, hidden cesarean complication that no one in the medical field wants to talk about: iatrogenic endometriosis.

This is my story.

Going in Blind

My last month of pregnancy I had kidney stones which led me to the hospital on May 11, 2010 with kidney infection with a high temperature. The doctors recommended that I elect for a cesarean delivery to save my kidney and increase my chances for a healthy baby delivery. I proceeded with my doctor recommendations without asking too many questions. I assumed my doctor knew what was best for me.

On May 12, 2010 I was blessed with a beautiful, healthy baby boy and following the delivery I was able to resolve the kidney stones and health issues which had made the pregnancy so difficult. I thought all the pain was now behind me and looked forward to the many adventures I would soon have with my growing family. But something wasn’t right…

Is This Normal?

Once home from the hospital, I started feeling like I wasn’t healing properly. I was experiencing nearly constant aching abdominal pain, swelling and bloating, and lower back pain. My left abdominal muscle felt weak and I had trouble rising from a sitting position.

I expressed concerns to my doctors. The doctors told me not to worry, a lot of women have trouble with the recovery from Cesarean deliveries and that any lump I was feeling was probably just scar tissue hardening. I trusted their opinions but I wasn’t convinced – the pain was just too great. As I spoke with friends who had cesarean deliveries and started to research more about the topic, I grew increasingly concerned that the pain I was experiencing wasn’t typical. Nearly 4 months after the delivery, I visited the emergency room with intense abdominal pain, hip and low back radiating pain and stabbing sharp pain in my left abdominal muscle. I described the pain to be as intense as passing kidney stones but not similar. I told them that I feel something is wrong with my abdomen muscle.  I even joked “did you leave a sponge in there?”  Doctors asked me about the past few days’ activities, and when did the pain start. I told them the pain started two days prior and have intensified; I was in severe pain, I haven’t been doing any type of physical activities lately. I said I first noticed the sharp stabbing pain in my muscle was when I was getting out of the car. Doctors tested my blood and urine for kidney stones but found no evidence and discharged me with a diagnosis of “musculoskeletal pain” from twisting getting out of the car.

I knew from the start, something went wrong…

I knew some of the potential complications, like bleeding and infection, which were briefly presented to me. From the first few weeks after my cesarean I knew that there was something wrong with my abdominal muscle. I kept searching for symptoms and signs of muscle being positioned wrong, infection in the muscle, and the possibility of doctors forgetting a sponge or instrument in my abdomen.  As the weeks turned into months and I was still experiencing pain I knew something was definitely wrong. I noticed a lump growing beneath my skin in the area just above my cesarean incision scar. Any daily activity that involved my abdominal muscle, such as exercising, coughing, sneezing, and laughing, would create discomfort and pain. The situation was growing increasingly concerning and I was becoming depressed and anxious.

I scheduled multiple follow-up appointments with both my OB-GYN and primary care physician to discuss the new symptoms and growing lump, but both doctors continued to dismiss the lump. They reassured me that my body had just changed after having a baby and that the lump was the result of hardening scar tissue or even stubborn fat. My OB-GYN recommended I see my urologist to investigate my kidneys and also a plastic surgeon to pursue the issue further. I was told that I’m a beautiful, skinny woman, with no stretch marks and no lose belly skin. A little bump above my cesarean scar and some inflammation are nothing more than a cosmetic issue that I will have to live with.  To stop “stressing too much” and to just be thankful I have a beautiful baby at home.  It was hard for me to accept the doctors’ recommendations because I was in far much pain.

The Pain Gets Worse

By the fall of 2011 my frustration was growing.  The pain I was feeling was affecting my ability to work, socialize and play with my new baby boy. None of my diagnoses seemed to be close to any of my symptoms. Frustrated, I started keeping a daily journal to see if I can create a pattern of my pain. I continued visiting my primary physician, OB-GYN about the growing lump and my monthly symptoms. The doctors kept telling me that my symptoms are not in any way related to the lump above my cesarean incision scar. Doctors even suggested that might have “Munchausen syndrome” and was feigning the illness. Wanting to eliminate all the diagnoses that the doctors have given me so far, I went beyond what anyone would do, to rule each one out. By the fall of 2012, my symptoms and lump increased and my health was slowly deteriorating. Few more ER and doctor visits and still my concerns continued to be dismissed. They suggested I should have neurological tests done so we can see if my brain is getting false pain symptoms. They expressed their concern; that they can’t find anything wrong with me, and still I’m continuously at the doctor’s office and end up in the emergency room.

A Possible Solution

Growing increasingly distressed by my symptoms and getting little support from my doctors, I turned to the Internet to try finding an explanation for my growing pain and lump. Why none of doctors ever seemed concerned to figure out what my lump was frustrating me more than ever. So I reached out via an online video conference and called an OB-GYN in Europe. I described my abdominal intense monthly symptoms and the growing lump. I told him that I only started having symptoms and lump after my cesarean.  I had no previous symptoms or lump, I currently had or ever had pelvic pain, normal menstrual cycle and no fertility problems.

After listening to my story, the doctor said that my symptoms sounded like “incisional scar endometriosis” also referred to as “iatrogenic endometriosis”. I had never heard of this condition before. The doctor explained that sometimes during a cesarean section, the endometrium tissue can be implanted outside the uterus. This can lead to the sudden emergence of endometrioma masses in a woman who has not experienced any pelvic endometriosis prior to her cesarean.

The doctor recommended having an ultrasound in the abdominal muscle area. Since my US doctors have been only focusing on my pelvic area, never of my abdominal wall region they kept on missing it.

Knowing Where to Look

In February of 2013, nearly three years after my original cesarean section operation had occurred; I visited my primary care physician again and demanded an ultrasound. The doctor was hesitant to order the test but seeing me resolve he referred me in for testing.

Finally, an ultrasound was performed on my abdominal region with the results exactly as the European doctor predicted: I had a mass in my left rectus abdominal muscle. A biopsy and a CT scan of the mass were ordered and the results confirmed that I now had an endometrioma mass in the rectus muscle or iatrogenic endometriosis brought on from cesarean. After more than 30 doctor visits in 32 months I finally had an answer!

A Diagnosis Is Only the Beginning

Finally discovering a diagnosis brought me a great relief and affirmation that my pain and concerns was not just “in my head” as so many doctors had tried to convince me. Unfortunately, the fact that it took several years to achieve the iatrogenic endometriosis diagnosis left me with even more battles to fight.

Leaving my condition untreated and ignored for so long had let the endometrium cells grow and extend over my muscle. I would now have to undergo significant abdominal surgery once again to remove the mass that caused me so much pain, money and mistreatment by all of my doctors.

Surgery and its Effects

In August 2013, I underwent surgery to remove the endometrioma mass in my left rectus abdominal muscle. Once in the operating room, doctors had to do a radical excisions of 8 centimeters of my left abdominal, muscle sheath, vein complex and epigastric artery. They repaired the muscle sheath with a 10 x 16 cm of FlexMD mesh.

While this surgery was necessary to remove the growing mass from my abdomen, it left me with permanent life changing issues. I now suffer chronic low back and buttocks pain, a permanently herniated stomach, making any actions that require abdominal strength, like exercising or lifting my own child nearly impossible.

I face the possibility of future surgeries to reinforce the mesh and fascia which could easily break at any moment by lifting heavy objects or straining the area. Even simple actions, like breathing, coughing, talking, walking standing, lifting, pulling, carrying and arising from a seating position will remain a challenge. I can’t pick up my son or do basic activities I enjoyed in the past.

I’m left with huge medical costs incurred searching for an answer, current treatments and future ones.  I’m currently searching to find a doctor to help me with my current condition (missing the 8 cm of my abdominal rectus muscle).  And perhaps most devastating for me, the results of the surgery has made it impossible for me to carry another child. My dream of growing my family and giving my son the little sister he always asks for are gone now.

We all can learn something from my story. My endometrioma mass in my rectus muscle was the direct implantation of my uterus lining during my cesarean. There was nothing in place to prevent this event from happening or to diagnose me at earlier stage.

My doctors completely ignored my lump and symptoms. They refused to believe me and all along I was pointing at the problem. They didn’t want to hear it.  Doctors thought they knew better but nobody knows my body better than I do. Doctors failed to provide me with the care I deserved and paid for.

Thank you for reading!

Ana

While I just started on my journey to raise awareness to this issue, I’m committed to making sure that my story doesn’t happen to any other new moms. 

We hold the power to help prevent and change the outcome for many women! Please help me bring awareness of iatrogenic endometriosis an under-appreciated cesarean risk!

Comments

  1. Ana,
    I have gone through this type of misfortune as well. I feel your pain. I had endometriosis too and some other issues with related to the surgery.

  2. Im happy to share my story too if it helps get the message out there…it was a very long 12 months of test after test for me to finally get to the bottom of it all…we now know an MRI is all that is needed to show up this type of complaint…just one simple scan……………………I will pop back on here and tell my story if you would like, ..Suzanne, Australia……….( 3 children, 3 c-sections, )

    1. Hi Suzanne! Thank you for reading my story, and I look forward to hear your story!
      The medical community states that this cesarean risk is rare and that it’s hard to diagnose! Neither of those two statements is true. We all need to speak up and demand changes!

      1. Hi Ana,
        here is my story………………..
        ….I have three beautiful children, truly blessed…all delivered by c-section due to CPD…..2001,2003, and 2008…
        At the end of 2011, I suffered a miscarriage…Early in 2012 I began to have pain in the lower left hand side of my abdomen and began to be concerned about whether or not the procedure I had after the miscarriage was done correctly or if something had been touched that shouldn’t have been…a million scenarios went through my mind.
        I didn’t let it go on, I went and had a pelvic ultrasound to check that all was well as soon as I started having pains.
        I returned to my obstetrician for this referral. Feb 2012.
        Three ultrasounds later, nothing found except maybe something wrong with my kidney, which sent me on yet another huge round of scans and appointments….( a wild goose chase for nothing ) every time I would go somewhere else for an ultrasound or scan, they would bring up the kidney thing…………..when in fact it wasnt my kidney I was worried about…it was this mysterious ‘pain’
        I would describe it to the doctors as a firework pain, it was all I could think of …it would flair, like pins and needles out wards…then stop…then flare again…and stop..continual….I felt that it was not in an organ, I tried to tell doctors that it was in my ‘skin,…my flesh…’ no one knew what it was….
        I found that I had the pain from day 7 on the dot of my cycle till around day 18…mildly when my period was due but mostly around ovulation time…..I would describe the flaring pain, like pins and needles radiating from inside my flesh out to my skin, my skin would hurt …at times now it feels as though I am being stabbed literally, in and out over and over continually about every minute…..as I sit now, I can feel it flaring, on ,…off….stab…..stab….stab…..I also have lumps and pain along my c section scar which becomes itchy for no reason at times, painful to touch, lumpy and hard. Although it is the stomach muscle pain that hurts me the most. At any time if I touch along my scar, I hurt………..
        I was then sent to a gastroenterologist…. it was thought that it may have been my bowel…..I then commenced more tests , scans, even a colonoscopy and endoscopy….I began to feel really down about it all and my imagination was running wild…I honestly thought I had bowel cancer….and the thought was terrifying…I would just cry and cry in the shower at night where no one could hear me, I honestly thought I was dieing and my children would be left without me….
        Finally I went back to my obstetrician after getting absolutely now where for 12 months……and he ordered an MRI scan….this was around December 2012, I managed to get in before xmas time. I finally got the results back and my ob took one look at them and said to me, there is no way I am opening you up to get all this…..you need an endometriosis specialist………….. I was his second patient that week that had been diagnosed with endometriosis in the rectus muscle…I had several spots of this along my c-section scar as well as a 4cm lump inside my left rectus muscle.
        To say I was relieved that I finally knew what this pain was was an understatement….I have never been so terrified about my health ever, to think that I spent a WHOLE year on the trail of this, only because I wouldnt give up…no doctor could tell me what this was, had never even suggested that it could be that………my own obstetrician who has delivered how many hundreds of babies, is only just now becoming aware of the complaint……………seems crazy to me. In the end, discussing it with him he admitted that he should have just sent me for the MRI in the February and saved alot of worrying and time etc……………….and that from now on, he will make it part of his diagnosis , to send all women straight off for the scan..as ultrasounds just don’t have the imaging quality to see the patches of endometriosis like the MRI does….it can save alot of heartbreak for women that are trying to fall pregnant also as they may not even realise they have endometriosis.
        I was sent to an endometriosis specialist, the best in the state, but came away disheartened as she prescribed synthetic progesterone and a life long prescription of my choice of three nerve pain tablets….all with side effects……………or surgery………..which she could not guarantee on the day that she would be able to even find the mass…I would be basically pressing on my own stomach to notify of her where the pain was and that is where she would cut……….it would not remove all the other spots of it that I have around my scar and uterus……as well as the problem that now the pain has been diagnosed as ‘nerve’ pain, removing the lump will not stop the pain………………and the fun bit………..it grows back…it only takes a speck….and it will grow again……………..I refused surgery.
        I chose to see a hormone health practitioner and take natural progesterone supplements, and a natural estrogen lowering tablet, as the endometriosis feeds on too much estrogen, I also took to eliminating sugar from my diet…..
        I could manage the days out of the month of pain, by knowing now what it was, and it seemed manageable for me…
        Further to this, is it now 2014 and I am in more pain that I can manage now…………..I feel that the lump has grown…and I am in the middle of more specialist appointments and another MRI booked to compare size and see if it has grown in size from Dec 2012…………………I am also now taking Lyrica daily for nerve pain. I have also been unable to conceive again since the pains began…whether this is coincidental or not, I do not know….
        I hope my story will help someone………….when I first began researching the type of pain I had, I found nothing………………….I did come across one girls blog who had had surgery, but apart from that very little info and always that it was ‘very rare’………..rare indeed….if you get on some chat threads now, there are stories everywhere…I think your idea of getting the risk to women who have c sections out there, and known is fantastic….so if women experience pains like this after their operations then they will know what it is, keeping in mind, sometimes this does not show its head for years like myself after your babies are born……….I had a very ‘messy’ c section with my third baby, so I am presuming that this is where the material got spread around……..but who really knows, it could have been 13 years ago when my first son was born………………..all I know is , Im stuck with it…….you are stuck with it, and my heart breaks for you, knowing that your choice of having another child has been taken from you….and how many other million other women out there are suffering from this same ‘mystery’ pain …….I hope also more women are encouraged to share their experiences of what has helped etc …….
        Suzanne….Australia.

        1. Hi Suzanne,

          Thank you for sharing your story. You made me tear up reading it, I know exactly what you went and are going through. Feeling helpless, frustrated, confused and scared of not knowing what’s wrong. There is no support for us out there, we are left to advocate for ourselves. My mission when I started my website was not only to help women get diagnosed earlier but I also to create a support group for women that I have gone through what we went through.

          From my experience and my research I see how this problem could be solved. Its mind bottling on how this is an acceptable thing that women are left to go through, and for the medical community not to do a thing about it. What are they waiting for; there is a solution for this problem! This is not as rare as everyone thinks; there are so many women in extreme pain that are left helpless and misguided. Doctors should do biopsy to confirm lumps above incision cesarean scar, before diagnosing women. I’m not a doctor, but I would never send a patient continuously home for years based on visual diagnosing. The lump and symptoms in synced with the menstrual cycle make this diagnostic so easy and very different from any other.

          Just like you, my pain would be unbearable around the time of my ovulation. The pain would get so bad during that time that it would send me to the ER. It felt like someone was twisting, pulling, hammering, burning, pinching and stabbing my left abdomen muscle. The pain would radiate to my left low back and wrap around my hips. It’s sad and funny how doctors would always send me home with musculoskeletal pain. Recommend rest, ice and ibuprofen while I was expericing pain as intense as child birth. I would always complain of my lump but they always assured me that my symptoms were not associated with my lump. My lower left abdomen lump was always “scar tissue” “lipoma” and “stubborn fat”, funny but they never checked it to confirm.
          So much money spent on unnecessary test but none them wore of what I wanted the doctors to check on. The doctors always had a good excuse. I will give the doctors the benefit of doubt and say that they didn’t believe me.

          I used to say that if I ever found out what my lump was; I would help other women never go through what I went through. I never gave up looking for my diagnostic, and I will never give up on helping other women. There are no words to explain the emotional and the physical pain that I’ve survived.
          Thank you once again for sharing your story! Please keep me posted if anything changes.

          I send you my love and a virtual hug! Stay strong!
          Ana

    2. Hi, I have had 3 c sections and am having so many pelvic problems and pain. I will be going to the doctor and asking for an ultra sound asap. Can u sen me ur story plz

      1. So sorry the story appeared. Thank you both so much 😀 I do not have lumps in my scar but I have on going pain. I now know what to ask of my doctors as they have dismissed my concerns. I know something is wrong it’s my body and I’m in pain not all the time whoever it’s effecting my life and causing me stress and depression. I can now go and demand an ultrasound and move from there. Thank you

  3. Ana, I am so sorry! I am mostly glad you found the answer. I learned something new and I know C-sections can leave some permanent damage.

  4. I am scheduled for surgery on the 7th. I too have been through 2 years of bouncing to different doctors and having multiple tests. It was the MRI followed by biopsy that finally revealed the cause of my pain was an endometrial lesion deep on my abdominal wall. Endometriosis is sneaky, my last c – section was 11 years ago! I have had 2 laproscopic surgeries over the years to remove painful adhesions but no endometrial cells were found then. The pain over the past two years was different though, growing more intense exponentially every month. I had to be very persistent and keep trying with different doctors to figure out what was going on. I had to keep convincing everyone that it was not in my head and it was starting to negatively impact my quality of life.
    I got the 3 month shot of Lupron in March to try and shrink the lesion for surgery. The hot flashes and mood swings have been worth dealing with because it completely stopped the pain. The plan is to have me on Depo-Provera (progesterone) for a year following surgery. My doctor feels that surgery along with suppressing my estrogen with the progesterone will give me the least chance of reoccurrence. Thank you for creating this website and trying to create some awareness. Abdominal wall endometriosis can be a very lonely plight. I will check in after surgery and let you know how it went.

    1. Hello Jessica V,

      Good luck with your surgery! Let me know how it goes. Did your Lupron shot stop the endo pain completely? Did they suggested the Lupron to shrink the mass? Did it work?
      I’m curious if your 2 laparoscopic surgeries didn’t cause the the endometrium cells to be transferred during the procedure. Just a crazy thought since you didn’t have it after your c-section and no abdominal mass was present at the time of your laparoscopic surgery. When did your abdominal endo mass pain start?

      Take care,
      Ana

  5. Hi Ana,

    The location of the mass was directly under my c-section scar, nowhere near my other incisions. It was hiding under the fascia and on my abdominis rectus muscle so no one spotted it previously. The endo pain started when my youngest was about 9. I have read where it took 11 years after a c-section for the onset of pain. Crazy, but the inconsistencies are part of why it’s so hard to finally get a diagnosis. I had pain the first week or so once I got the 3 month shot of Lupron. Since then I have had none at all! My mass was growing at a fast pace the last 6 months before the shot and luckily the Lupron stopped it dead in its tracks and shrunk it by almost half. The endo mass removed was about 3cm by 3cm. The surgeon needed to remove some muscle as well to get clear margins but I did not need a mesh. The surgery itself was very easy, in and out with minimal pain. I am just to take it easy and not lift anything heavy for a couple of weeks. Other than low energy I really feel fine. I will see the gyn on wednesday and most likely start on Depo to try and make my chances of reoccurrence slim. It’s so interesting to me how our stories are all so similar yet so different too. Please feel free to contact me directly any time.

  6. I am so sorry to read all of the stories here about how long it took to get a diagnosis for your pain. I was extremely lucky, I only had severe pain for a few months. My GYN had no idea what it was and referred me to a general surgeon who took about 5 minutes to tell me it was an endometrioma. I had it removed about 5 weeks ago. My question is, can it come back? If so, how quickly. I noticed a large lump yesterday in the same spot. Not sure what it is, ideas???

    1. Dear Emily,

      It’s good to hear that the general surgeon caught it in time before it extended. I’ve had my endometrioma mass removed one year ago, MRI and ultra sounds shows no recurrence. Usually when surgeons remove the enedometrioma mass they remove with margins to cut down on the re-occurrence. From all my research, most of the cases had no re-occurrence but remember there is always a chance if some endometrium cells are left behind.
      How big was the mass and where was it exactly? Would love to hear back from you.

      Take care,
      Ana

  7. It was just above the left end of my c-section scar. It was about 3×4 cm. I went back to the surgeon yesterday because I have some swelling and a lot of discomfort in the left side of my pelvis. The incision looks fine but there is a lump where the endometrioma was removed. The pain and swelling started about 3 weeks post op. He told me that things sometimes get worse before they get better and to give it 3 months. Not sure what I am going to do. I have had other surgeries and never felt good at 2 weeks post op and then worse at 4 weeks.

    1. Emily,

      I am sorry to hear that you are experiencing so much pain and that you might have some type of post op problem. Did you have abdominal wall repaired using mesh? If so, I’m curious what type of mesh was used? I had my muscle sheath repaired with FlexMD. I’m very intrigued by what type of problem is causing you to be in so much pain. The endometrioma mass would not be one since it was removed and it takes some time to regrow back (in case cells are left behind). Wishing you good health and I hope everything turns out ok. Please keep me posted.

      Take care,
      Ana

  8. Went to my PCP and he did blood work and a CT. The radiologist said it was a probable abscess and referred to me to another surgeon for a second opinion. He is watching it, not sure if its an abscess or hematoma. So still waiting for answers!

    1. Hi Emily,

      More referrals which lead to more medical costs. I wished the doctors would be more prepared in diagnostic women’s conditions. So sorry you haven’t got a cleared answer yet!

      Take care,
      Ana

  9. Thanks for this website. I thought I am the only one who has this condition. We really need to educate women as well as doctors about this condition. Please continue to. share you experiences as this brings relief to other suffers as well as information on how to deal with this condition. Mine started 2 years after the birth of my youngest. My OBGYN already knew that it was endometriom based on the symptoms i am experiencing (cyclical pain as well as firmness of the lump during menses). Mine was located on the subcutaneous region just above the cs scar. It is less than 1 cm nodule based on sonography which was done. 2012 and 2013. i will have to go back to my OBGYN this year for follow up.

    1. Hi Tintin ,

      I am very happy that my website is helpful to women experiencing this C-section overlooked risk. Just like you I felt I was the only one going through this. Doing a lot of research I realized that I wasn’t alone. That was my reason for starting this website, to bring awareness and connect with other woman. So is your lump giving you any pain or has it increased in size at all? Would love to hear from you when you get a chance.

      Take care,
      Ana

  10. Omg I wanted to cry reading this I have been going through something very smiliar to this after haVing a hysterectomy but not total. A month after I kept having unbearable pain that sent me to the er. Finally after many docs and many normal test. My gyno said it could be endometriosis. I never had this before so I knew the surgery brought this on. After so much research I knew it was iatrogenic endometriosis. I am taking birth control now for it. It helps but really sucks this surgery brought me so much pain and now I am on birth control til I go through the change. Glad to hear I am not crazy. I know so many docs thought I was. Thanks

    1. Hi Misty,

      Thank you for reading my story. I am so sorry to hear about your hysterectomy and complication. So how long ago was your hysterectomy? Have you had an MRI locating the endometrioma mass? Birth controls only help with alleviating pain, it doesn’t completely stop the mass from growing.

      Website about iatrogenic endometriosis: http://www.hersfoundation.com/docs/Endometriosis.html
      For medical reports research go to: http://www.ncbi.nlm.nih.gov/pubmed/14607029

      Please let me know if you have any other question, happy to help.

      Take Care,
      Ana

  11. Sorry for the late reply. Yes, the pain is there, mostly during my period and extends a week after my period stops. On most days, the lump is smaller, less firm and not painful. However, it is much bigger, harder, and extremely painful like burning sensation during my period. There is no discoloration in my skin but you can feel the lump underneath the cs scar. I have seen two doctors already and both diagnosed me with endometriosis based on my symptoms.

    1. Hi Tintin,

      So the next step is to get an MRI and get the location of the endometrioma mass. Remember this is a progressive condition; it gets worst with time as the endometrioma mass grows and extends to any organs in the surrounding area.

      Please let me know if you have any other question, happy to help.

      Take care,
      Ana

  12. Hi,
    I was finally diagnosed with endomirtiosis due to an emergency c-section.
    After suffering with the same pain you described I was told by a number of doctors it was just my “scar tissue” and was sent on my way!
    I was finally diagnosed 6YEARS later!!!!
    I am still deciding what action to take next reguarding treatment, so any advice you have would be amazing!

    After finding this out and googling info about it I found nothing! Untill a year later I have come across your post!
    awareness defiantly needs to be spead about this condition.
    Kirsty x

    1. Hi Kristy,

      I started this website because just like you I was frustrated due to the lack of information about this cesarean risk. We get misdiagnosed, medically mistreated and misinformed. I can’t state enough how important it’s to bring awareness. We women suffering from this cesarean risk are left to suffer with no medical treatment for so long. Diagnosing this in timely matter would’ve made a huge difference in my life.

      As for treatment goes; the only way to remove this growing mass is excision (surgery). Other treatments could slow the growth but have major side effects. I would certainly do research on anything that your doctors recommend for treatment. Remember to always get a second opinion and be your own advocate! You know your body best!

      Please let me know if you have any other question, I am happy to help!

      Take care,
      Ana

  13. Thanks for sharing your story. I, too, had an endometrioma develop just above my Cesarean section scar. my daughter is now 6 so it took that long to attach to my muscle and get to ~2cm in size. I’ve always had pain after running or performing targeted core exercises since my C-section; however, up until this fall, I considered it a minor thing to just endure after a tough workout. I noticed a lump (not visible to the naked eye, but definitely palpable) early this fall and initially thought it was a hernia or a problem with scar tissue. I had never heard about endometriomas before…I had never had cause to think I had endometriosis or anything irregular going on in my reproductive area. I got myself a dr. appt. and was told I probably just have gas. Yes, gas. I said no, it’s not digestive. I stood up, unzipped my pants and made him feel where the lump was. The dr. finally admitted I should probably get a CT scan, which he then ordered. After the CT scan, I was told, simply, “everything’s normal”. I knew it wasn’t normal, so I then chose to see my OBGYN. She poked around and got me into a general surgeon. It took him less than a minute to listen to me, feel it, and determine it is more than likely an endometrioma. I had it removed one week ago and I am glad it is out of there. Reading your story made me feel reassured that I did the right thing; what if I let it go and it grew deeper into my abdomen? As it was, it had started to grow into my muscle lining, so he had to cut into that (apparently not enough that I needed a mesh, though) and stitch it up . When I asked him why there was so much swelling above my incision, he said that the stitching of my muscle lining caused that. I didn’t inquire much after that because, frankly, after any surgery, I’m just glad to not be dead.

    So here I am a week post-op and feeling better (I can sneeze without causing pain and all that). But the bump remains. Initial swelling went down as I would expect it to…but that bump. I’m worried it’s always going to be there. I tend to over exaggerate things, and it has only been a week, but I don’t know what everyone else’s long term post-op experiences have been? My post-op dr. appt. is next week, so I will get my surgeon’s take on it but I can’t help but wonder if I will have to live with this weird bump forever? (you can call me vain; I’m ok with that ;))

    Again, thanks for sharing. It’s nice to know I’m not alone. :)

    1. Hi Shari,

      Thank you for reading my story and sharing yours with me. Feeling alone with so much misguidance from doctors is such a horrible sentiment. This cesarean risk gets easily misdiagnosed; it frustrates me because if diagnosed early it would be such an easy fix.

      I am happy your recovery is going well and that your endometrioma mass only extended to 2 cm. The current bump (bloating effect) you are currently expericing is the lack of abdomen compression. Since you are missing a 2cm of your abdominal rectus muscle your intestines don’t have the same compression, so they stick out. At least that’s what is happening with me. The other thing I have noticed since the surgery is that my intact right muscle is very tense, has spasms and its’ hard to the touch.

      Please keep me posted on your post-op experience.

      Take care,
      Ana

      1. Thanks for reading and responding to me!! Here’s an Update:
        I met with my surgeon and he told me the lump I have above my excision site is a hematoma. So it should go away on its own as my body reabsorbs the blood. It feels smaller and harder than it was, even three days after I met with him, so I’m starting to believe he’s right, again. Why it occurred is a mystery (3/10 people develop hematomas post-op). I gather he either inadvertently nicked some blood vessels and/or it was an effect of my having taken an ibuprofen 5 days before the surgery. It could take up to a month for the hematoma to go away. Time will tell.

        Shari

        1. Hi Shari,

          Did you have an biopsy? That’s the only way to get a clear diagnostic. How did the surgeon diagnose you? In my case and others, we’ve had doctors visually diagnose us with many other things before confirming the true diagnostic via biopsy with imaging. Do you have any pain in-sync with your cycle? If not, I’m guessing the surgeon is right and that’s great news.
          A hematoma or haematoma is a localized collection of blood outside the blood vessels, usually in liquid form within the tissue. So your 2cm hematoma was formed 6 years ago?

          Take care,
          Ana

          1. Sorry if that my response was misleading or confusing. The lump diagnosed as a hematoma is a result of my recent surgery 2.5 weeks ago where he removed the endometrioma.
            Shari

  14. Finally! I have found some kind of discussion where there are people who know what I’m going through. Thank you Ana for starting this page and sharing your story.
    I had a 6.5cm x 4.5cm endometrioma removed from my left Rectus Abdominus muscle in 2010. My last child was born by C-Section in 2004! By the time I was properly diagnosed. I was getting so sick every cycle and I was in so much pain.
    Since the excision surgery, I have known something still wasn’t right and started getting ultrasounds again only 6 months after the op. I have been trying to tell someone since then that it’s not right in there, but only now have an appointment with the surgeon at the end of Feb (so many ultrasounds, and more CT scans later). I believe a new mass (recurrence) is growing on the edge of the mesh scarring as none of the tests are showing a lump, just ‘heavy’ scarring around the mesh area and ‘thickening’ of the rectus abdominus muscle. I’m having a lot of pain and tightening (and ‘pulling’) on the right side but am unsure as to what any of this is! I am at my wits end as there is little information about this. So happy to find this page and find others. Thanks again Ana.
    I’m not sure what the next step is for me, I don’t want more surgery, especially if it’s just going to keep recurring, but as we all know, it will only continue to get worse with each passing cycle. I would welcome menopause right now!
    Can we start a forum or an online support group? I know I would welcome such a space to chat with others. I’m sure there are many more looking for answers and others who know what they are going through! I really respect your work here Ana in raising awareness and have just clicked through to your Twitter and Facebook links and all the information you are posting. So grateful! x

    1. Hi Michelle,

      Thank you for your kind words, it means a lot to me. I agree with you; there is a lack of information and support groups online for us women going through this. I wish more women would speak up and start blogging. Since I started this website I feel great to connect with women from around the world. I no longer feel alone, I have a purpose to my horrible medical experience. I’ve been trying to have this overlooked cesarean risk picked by media outlets. I’m not sure why no media wants to cover this … The public and medical community awareness of this overlooked cesarean risk would make a huge difference in so many women’s life. I’m hoping that in the future I can start a non profit organization to help women and put a stop to this iatrogenic endometriosis. Would love to hear more about your ideas for a support group…

      Have you had your CT scans yet, any recurrence of the mass? Are you thinking about a hysterectomy? Would love to hear back from you.

      Thank you again for all your kind words and reading my story!

      Take care
      Ana

  15. Hi Ana

    Well after CT scans and seeing the surgeon this week, yes I have another endometrioma on the right rectus abdominus muscle (previous endometrioma was removed from the left). The surgeon does not want to proceed with another excision and has referred me back to a gynaecologist to try to manage the pain and symptoms until menopause. Menopause could be 10 years away!
    I have only received this news just this week and am still processing exactly what it means for me. We know what it means – chronic monthly illness and pain that will get worse over time!!! I am loathe to introduce synthetic hormones back into my body, or have a hysterectomy (for the same reason – hormone replacement afterwards) but would really love to be able to communicate with others who are going through this too. I am keen on trying diet changes and I know that I am going to have to be fanatical about choices and extremely regimented in the application of these choices in order for it to work. I am very keen to start some sort of support network and assist if I can in finding and furthering information for us all. I will get in touch through your contact page with my details.

    1. Hi Michelle,
      I am so keen to start a support network for us all.. We so need it as I don’t feel like I am getting any support from anywhere so really needed… Would love to hear from you…..My email is klg2809@gmail.com
      Thanks
      Kara.

  16. Notable again in my circumstances is that this diagnosis has taken 4 1/2 years! Second time around! I have been going back since 6 months after my previous excision surgery and pointing to the pain and a growing lump. My doctor has consistently referred me for ultrasounds and every time I have been told it is scar tissue from the previous surgery and where the mesh ends are.
    It shows on the CT scan as a lump on the rectus abdominus muscle (found by the surgeon) but the radiologist didn’t even find it. Thank goodness my GP referred me back to the surgeon so he could double check the CT images and he found the lump quite clearly.

  17. Hi ladies I just had endemetriosis removed from my c section 3 weeks ago. It was 3cm and the doctor said it had the consistency of concrete. I had my last c section 4 years ago and I noticed the lump straight away. It took all of this time to have it diagnosed. It has been 3 weeks since the operation and now I’m having constant throbbing down my right let, bum and back. Should this get better r is this what I will have to put up with now?

    1. Hi Cristina,

      Sorry to hear about the pain following your surgery. When you had your endo mass did the surgeons have to remove anything else? Have you seen a dr. for your current pain?

      Take care,
      Ana

    2. Christina,
      I had the same thing happen after my endometrioma was removed. I felt pretty good about 2 weeks after the surgery but by 4 weeks post op I was in a lot of pain and had another lump where the previous mass had been. I had the same pain you are describing except on the left. I went to a different surgeon for a second opinion and he said he felt it was a hematoma and that it would most likely go away on its own. We had a few appointments and none of which I left happy but he was right and after about 6 weeks it was gone.

      I had my endometrioma removed in August 2014, pain with the hematoma until late October. However, I still have discomfort in that general area-especially around ovulation. Really hope it isn’t coming back!! I hope you are feeling better, curious to see how you are doing now.

  18. Hi,
    Thank you for sharing your moving story, I have spent ages scouring the net and this is the first page I have come across. I had my c section almost 4 years ago, the left side of the scar was very painful and looked dark compared to the rest. This eventually healed but it remained darker for a long time. After about 18 months I started to get a lot of pain so I went to the dr and was referred to see a surgeon for a hernia repair. The doc did look concerned when I mentioned that it was a lot more painful during my period but she still thought it was a hernia. Surgeon refused to do the op saying it was scar tissue and I was referred to a pain clinic for long term pain management. This left me feeling really miserable, the prospect of a lifetime of pain is awful! I went back to see another doc who said it sounds like incisional endometriosis, I was sent for an ultrasound and gyno app and finally got my diagnosis . I am scheduled for surgery on 07th April and it cannot come soon enough, I am counting down the days until the pain is gone. I just pray that it is successful and that I recover quickly. I am feeling anxious about the op (despite lots of previous surgeries) because I am a busy mum and I don’t have time to be out of action and I’m terrified that it will look horrific afterwards.
    I’m so sorry to read that you can’t carry another child, I hope things improve for you xxxx

  19. Wow! Thank you so much for your Information. I recently have been experiencing the same issue. I went I to see my doctor and he diagnosed the same thing as it being scar tissue from my ceasarian scar! My doctor just gave me some pain killers an said if you need it take and at the time, the pain hadn’t bothere me in almost 2 months so I wasn’t to concerned, and in hope tht was just the problem. But I still wondered why I was getting such bad pains in that one area! And now the pain has retuned and remember that this can’t just be from scar tissue or “normal menstrual ” pain ! Now to make a appointment with another doctor and get this resolved before it causes to much complications.

  20. Hi all ….

    What a relief to find other women like myself. I had 2 c sections (2006 & 2008) and in 2012 I couldn’t stand the pain any longer. I was having period like pains all through the month and my periods were very heavy. After going to my GP for 2 years only to be told it’s my age!! At the time I was 39 , I walked into the surgery and demanded to see a doctor, I managed to see a female GP and she was just wonderful. I cried and she listened and immediately referred me to see a gynaecologist at the local private hospital at the expense of the NHS (our health service is free in UK) this would’ve cost thousands of £s!!! But as I had been ignored and i was so distressed she wanted urgent treatment. 3 weeks later I had a laparoscopy and histoscopy and had adhesions removed and endometriosis was confirmed!! What a relief!! I wasn’t lying or imagining it!!! So nearly 3 years later it’s all happening again, I have just spent the weekend in hospital and left with no diagnosis at all. They kept concentrating on my appendix, I told them how I felt but it fell on deaf ears!!! I am now going to my GP in a couple of days to be referred back to the gynaecologist, he did say he would do a hysterectomy if I felt I needed it and to be honest this is the only way I can see the end to my physical and mental suffering.
    Thank you to all of you and your stories x x

  21. Hi! So glad i chanced upon your website. Finally i have answers on my questions. When my ob found out about my endemetrioma, she advised for an injectable birth control. I took it every two weeks, then after a month and now after three months. The lump did disappear but everytime i decide that i should stop because i also think of the side effects, the pain will go back. And did ayone of you here experienced blood coming out of the scar? It has been happening to me especially now that im thinking of giving up the injectable.

  22. I am in tears right now!! Lol! I am going through this! I have had a lump for 6 yrs now. About a yr after my sons c section. It started only during periods & tight pants. My mystery knot was told to be scar tissue or a hernia. I’m fine. Well the pains got worse & the knot got bigger. From a marble to a big gum ball, it didn’t reaalllly get worse till these last few yrs. really bothered me after my daughters c section. Holy cow, right now I can’t cough, laugh, whatever! My stomach hurts. Feels like me c section scar is about to rip open. I finals got insurance & seen a surgeon! He said endometrioma cyst! I’m having surgery very soon! My knot, what I can feel, is about the size of a big pecan!? But the pain is beyond the size! I hope mine isn’t anything serious since I’ve had it for 6 yrs. but the size isn’t large. I asked if it is a form of endometriosis. & he said yes. So I guess o should follow up with an OB after I heal from this surgery. Thank you for sharing ur story! It really hit home with me! Im in ur shoes!

      1. I am facing a similar situation and am trying to figure out what to do. I’ve had two ultrasounds to rule out other problems, but my ob-gyn suspects that I have an endometrial knot. I can feel a lump on the lower right of my C section incision, and this is where the pain radiates from. For a few months the pain was cyclical but now I have pain all of the time (it intensifies during my monthly). He would like to refer me to a general surgeon. I am terrified. I didn’t want a C section (it was an emergency procedure), but I ended up having one, and that was 5 years ago. Can anyone tell me how long recover time is post operation? Would taking birth control pills be at all helpful?

        1. Hi Melinda,

          Surgery is the only way to completely remove the mass and stop the symptoms. Other things might help but as long as you are menstruating, the mass continues to grow. Recovery time, it’s different from person to person, depending on the mass location. Talk to your general surgeon about the post operation recovery. For example in my case I stayed in the hospital for two days, the draining tube was in for one week, and I started feeling stronger after two weeks.
          I hope this information helps.

          Take care,
          Ana

  23. 4 years ago, my 3rd c-section left me with the same sort of “mystery mass”, a whole lot of pain and the same unanswered questions or solutions. The ER referred me to general surgery. General surgery referred me to my surgeon who did my c-section who in turn referred me back to general surgery and so on. Now, after reading this, I know there is a condition and something can possibly be done! Thank you for your story!!

    1. Hi Crystal,

      Thank you for reading my story and sharing yours. It’s truly frustrating the run around our doctors give us when it comes to this condition. So much misguided information. The medical community really lacks awareness of this condition. Please spread the word, we need to put an end tho this medical misguidance! Good luck with your abdominal mass! Keep us posted.

      Take care,
      Ana

  24. Just wow. I as well have lived thru this. I’m almost 1 year post op and still in a lot of pain. I live with a 7″ scar up and down and the fear of the biomesh failing me.
    Thank you for sharing!
    Rachel

    1. Hi Rachel,

      Sorry to hear about your ordeal. What are doctors saying about your current symptoms? I am very happy with my FlexHD mesh, my body accepted and grew my own tissue on it. I am curious to see if there is anybody out there with your type of symptoms with a biomesh… Have you looked online?

      Take care,
      Ana

      1. Ana,
        Thank you for your response. I went in July for 2nd opinion. He sent me for a CTSCAN and I am STILL waiting for him to call me back. However they did send me the report. It seems that the mesh has moved, it’s redundant/clumped. I’ve looked online, I believe they call it mesh migration. Of course it’s rare, and I don’t see that it’s ever happened with biomesh. I remember in January, 2-3 months after surgery feeling a pop and I could feel stitches from the outside. I went and saw my surgeon and he didn’t feel like I had anything to worry about.
        Now, I’m almost a year post op and have a burning sensation up and down the left side of my abdomen. I am a hairdresser and after a 8-9 hour day on my feet I look 5 months pregnant. The inflammation is so extreme I can barely walk.
        All I want is to feel better. Normal again!
        I do plan on getting all of my records from all my surgeons so I have an idea of what they did in October.
        Hoping for the call from doctor so I can move on!

        1. Hi Rachel,

          So sorry to hear about your pain and inflammation. I hope you get some relief soon! It’s crazy how long it takes doctors to get back to us . It took one of my surgeon 3 1/2 months to return my call regarding scheduling my surgery.

          Take care,
          Ana

          1. Ana,
            I had to update you. The biomesh put in a year ago October 15 is clumped like a piece of paper at my belly button extending to my lower abdomen. I’ve sent my operative reports to Nevada hoping to get an opinion of a specialist. I want the mesh out but also fear the future. i can’t wait to move on with my life!

          2. Hi Rachel,

            I am so sorry to hear about the mesh problem. What did the specialist tell you? Can you be without the mesh?

            Good luck and keep us posted!

            Take care,
            Ana

  25. Hi my name is sue I have a mass on the left of c section scar and burning pain radiating up to left hip after reading your stories I think it could be the same thing am awing gynaecologist app does this sound like what other people’s symptoms are ? And do u have any advice ???? Xxx

    1. Hi Sue,

      I would recommend you set up an appointment for an MRI with contrast, please make sure to tell your doctor to check the abdominal cavity. Good luck and keep us posted.

      Take care,
      Ana

  26. Hello
    I was amazed as I find you story. Mine is so similar, but I have suffered through the pain for 9 years. I have had multiple surgeries, including hernia repair, hysterectomy and a couple of surgeries just to look around. Finally this last may I went to the ER because the pain became to much to bare and was an everyday thing. The doctor order a CT scan and it actually showed something, but was told it was probably scar tissue. I was given pain meds and sent to my OBGYN, who then sent me to a OBGYN specialist, who them sent me to a general surgeon. That was the best day I had in a long time. The surgeon looked at me and told me that he was almost 100% positive I had an endometrioma. Well on July 24th 2015 I had surgery, which required a lot more tissue and muscle to be removed than he originally thought. I was sent home the next day, feeling pretty good. Until yesterday I developed a seroma of fluid that had made its way to the surface. I was so scared as fluid poured from my wound,but the doctor oncall said it is a normal complication as long is it isn’t yellow or have pus. He put me on an antibiotic , just to be safe. I am so glad he did, because tonight I feel like I have the flu, fever, chills and aches all over. I have my scheduled follow up tomorrow. Scared because how do I know if infection is local or systemic? Again I can’t believe that I am not the only one who had suffered through this situation. After years of feeling like doctors didnt believe me, i wanted to cry when surgeon finally had an answer. I hope all our stories, can bring light to this condition and help prevent other women from suffering as we did!
    Sarah

  27. hi Ana,
    I’m so glad I found your story. It’s honestly almost the exact scenario that I’m going through right now. When I was 21 I had twins at 32 weeks. I had a very complicated pregnancy and severe high blood pressure. I first went into labor at 29 weeks and lived in the hospital until they couldn’t stop my contractions anymore. We proceeded with labor at 32 weeks. I wanted to have a vaginal delivery and after about 10 hours the specialist advised me that I needed an emergency c section due to my blood pressure. Being so young and afraid I agreed. No specific c section risks were explained to me, just general consent about anesthesia etc. My girls were born healthy and after spending a couple months in the nicu came home. Everything seemed fine but my scar was always hurting. My dr said it was normal. I dealt with it and continued on with my life. I became an RN, I was an athlete, everything was fine but I always had this nagging pain in my lower left abdomen. I am now 28 and about 3 years ago the pain in my abdomen was becoming a serious problem. I couldn’t lift weights which was my thing, I couldn’t lift patients, I just wanted to lay in bed all day. I finally went to the ER, they treated me like I was a drug addict seeking pain meds and I was sent home with no answers. Time went on and I went to ER probably like 6 or 7 times for the excruciating pain. One time the ER doctor sat me down with a social worker and told me she thought I had Münchausen syndrome and referred me to a psychiatrist. Especially because I’m a nurse, this was so insulting and I felt so embarrassed and hopeless I actually started to wonder if it was true and stopped even going to the ER. In the 3 years I had a colonoscopy, MRI of my stomach, EGD, MRI of my brain, and a scope of my bladder trying to get diagnosed and nothing. Two weeks ago I had been dealing with the pain which had gotten much worse over the span of a few days that I finally went to the ER. I decided to go to the hospital I work at bc I’ve lost faith in the other one, even though I didn’t want to handle this at my job bc I didn’t want coworkers in my business. But they were wonderful and through a CT and an ultrasound discovered the 2.7cm in my rectus muscle on the left side. It didn’t show up in previous scans because they were only looking at my organs and not the abdominal muscle. I saw a surgeon the next day who after hearing my whole story told me he’s pretty sure it’s an endometrioma. I’m having surgery in 2 days to get it removed. I’m so relieved to finally have answer and to be able to say “haha” to all the people who I think thought I was a hypochondriac. Even my own family was getting annoyed by me always complaining and coming up with crazy theories of what it might be. I’ve been in so much pain and so depressed for such a long time I’m so glad I know why now. I am however really scared for this surgery and the recovery time. I haven’t been to work since July 30 and I’m hoping to be able to go back by August first because I will have used up all my illness pay after 5 weeks. But being a nurse is demanding so I’m really worried about it. Hopefully everything goes fine. I was also planning on having an abdominalplasty to get rid of skin and fix my diastisis so I’m praying to God this isn’t going to interfere with that because I was really looking forward to wearing a bikini again after 7 years and not being insecure about my body. Thank you for sharing your story and good luck with everything!!!!

  28. Hi Anna..i’m also delivered by c/s at 2010..i was fine but 18 months ago i developed severe abd pain..i did U/S which shows a cyst in my left ovary..i underwent laparatomy, they found left ovary endometrioma and he did cauterization of the cysts..but 2 months later i still complaining of same pain..i underwent laparascopy they found endometriotic implants in my pelvis and cautery done..since that i’m on OCPs but this period i felt a pain at C/S scar site with feeling a small nodule…i’m hopeless with this case really and i don’t have a desire to visit any gynecologist

  29. Hi ana and all the women who have commented on this post i have nothing but the greatest compassion for you all as i have been suffering with all the same pain and issues as all you have i had my third csection on 25 sept 2012 when i gave birth to my daughter nevaeh lily.. I had the usual discomfory and pain as you do after cesarean section but i had to return to the hospital four days after (i was released after two days post op) to remove the exterior stitch.. I lay on the bed and showed my wound to the nurse who then immediately went and got another nurse who also looked at it and called another nurse while all whispering to each other i asked if something was wrong they said not at all we just need to get the surgeon who did your csection to come and look at you.. I waited crying for an hour n half until she (the surgeon) came.. I was hysterical by this point thinkin something seripus was wrong with me with the way the nurses behave.. The surgeon looked at my wound and reassured me i was fine and went about removing the stitch which took over an hour and caused me unbearable pain she then prescribed me a painkiller called zydol which is a tramadol based analgesic i asked if this was safe to take while breastfeeding she said oh yes of course.. And to be honest i wouldnt even drink tea while breastfeeding for fear of affecting my precious little ones digestive system so i took the prescription to my pharmacist the next day to get a second opininon he then told me definitely NOT to take tramadol while breatfeeding i was glad i had got another opinion.. Anyway after this i continued to be on severe pain and discomfort barely able to walk and sit and feed my baby over the next five weeks i had been to my doctor numerous times asking why am i supposed to be in such pain all the time my previous two csections hadnt been like this yes i was in some pain but not like this i had been mobile out walking doin house work normal routine after a week or two she just said every post csection healing period is different and it will settle down soon within a few days of seeing her i was back absolutely crying my eyes out in pain.. Not able to sleep or sit or stand and worse i could barely lift my baby to feed her i felt like a complete failure.. My doctors answer was to stop breatfeeding and to take strong analgesics immediately to benefit me and baby as i couldnt continue in this discomfort.. Its been three years since then and sadly it hasnt got better but worse now i also have excruciating lower back pain leg pain.. Constant pins and needles in both feet a completely frozen knee.. A largely distended area just over my scar which is always painful i cant wear any kind of tight fitting clothes i cant wear a belt i cant lie on my stomach to sleep i cant rise up from sittin to stand up without the pain of being stabbed in the stomach every period that comes is so severely painful and heavy i get two large swollen area that are rock hard on either side of my abdomin i have a massive hole in my abdominal wall bigger than the size of a peach where ny bowel and intestine bulges through when im on my menstrual peak a huge hard lump forms on either side than is so sore i cant bare to touch one side is larger than the other and i get electric shock pains to my vaginal area during this time also but generally i am always in severe pain i cant live s normal life i cant be the mother i so badly want to be it kills me not to be able to go one single day wheres there not something my kids ask of me that i physically cant do.. I have been to so maby different doctors who have no explanation ive had maybe its a hernia maybe its just your body s ability to recover or maybe its a bowel problem ive even been told oh never mind about your stomach theres nothing to worry about you will be fine eventually ive suffered physically emotionally and mentally so much these past three years and ive felt so low that i couldnt find my way back up its been so hard to keep trying and not give up when it feels my body has given up on me and then i googled my symptoms and i fpund youre post ana.. I read each and every one if the statements posted and i feel sad and i feel happy at the same time because its sad that so many of us have been going through this alone with no doctors support and diagnosis and being in a position where you actually are hopeless at finding a cure or solution because they cant diagnose the problem snd i feel happy because finally i have a name for this condition that has robbed me of so much and has been a painful dark shadow over my life without a glimmer of light.. Now i can finally go to my gp and say this is the name of my illness.. You need to start treating it and hopefully i can start looking forward to getting my old self back.. My thoughts and sympathies and admiration for you all who keep going on despite the pain and everything that comes with this condition thank you so much ana you do not know just how special your post is without it i would still be right here in tje dark you have been the light and i thank you endlessly for that i will keep you updated with my gps treatment and diagnosis plan. Sending a massive virtual hug to all of you women xxx

    1. Thank you Shona Murphy for sharing your story with all of us here. Sorry to hear about all the things you’ve going through. I am happy you found the website and it was helpful to you. So what’s your plan?
      Keep us posted and the best of luck to you!

      Sending you back a warm virtual hug,
      Ana

  30. I have same story. I was told it was neurofibromatosis. Same deal worse at ovulation. I believe mine are endo masses. I know i have active endometriosis was see in laborodcopy. Getting so discouraged. By comparing stories maybe we can find the best way to help resolve this horrible debilitating condition. I fear surgery. My dr even saying stay away if you can, never come out right. Ugh

    1. Hi Jjbaron, Have you had a second opinion about surgery? So, I’ve had my surgery two years ago and I can tell you I haven’t had any problems from it and no mass re-occurrence. Yes, my bio mechanics are not the same since I am missing that portion of my abdomen muscle but I feel much better not having that pain and growing mass monthly. What is your doctor referring to “never comes out right”?
      Would love to hear from you.

      Take care,
      Ana

  31. I will say accupuncture and Chinese medicine ..herbs. took inflammation down best of any. Gets expensive so I have to limit. Insurance won’t cover . Ugh

  32. I also had an endometrioma mass attached to my rectus muscle on my right side. I had it removed about 3 weeks ago. I had the pains for about a year before I had a ct done and was referred to a general surgeon. I had a c-section in 2008 and I was told that it was caused from that.

    1. Hi Hope,

      Sadly it’s true. I just wished doctors would admit and diagnose women in a timely matter. Endomemetrium tissue transfer during a cesarean procedure happens often and it’s easily brushed off by doctors as a natural occurrence.
      How are you feeling since the surgery?

      Take care,
      Ana

    2. Hey! My surgery is booked for 22nd Feb but no idea of how
      Long I will be in hosp and recovery times? Could you help me please? Thanks, Louise

      1. Hi Louise,

        Depending on your surgery, location of the mass, etc… Generally speaking; hospital stay is around 1-3 days and recovery time is about 1-2 weeks. I hope this helps. Please contact your general surgeon they should be able to answer that the best.

        Best of luck!
        Ana

  33. Ok so I am 10 weeks post hysterectomy and I am reading my current pain experience…even down to simply getting out of the car is the same as u Ana that’s exactly when it started! …. I had endometriosis and Adenomyosis and needed the uterus go a as it was very diseased… I had very long complicated operation lasting over 3 hours it was supposed to be about 45mns…. My uterus was a mess … I wonder if some accidentally dropped into my incision area and was sewn into my scar? This is scary so glad I happened upon this… I hope you find comfort in your little boy xo big hugs from NewZealand

    1. Hi Westerly,
      Sorry to hear about your mishaps. Endometrium tissue easily spreads, specifically if the surrounded area is not clearly irrigated (cleaned).

      Thank you and best of luck!
      Ana

  34. I had an emergency c .its been nearly 3 years.i have had this lump near the cs.i have been going to the docters for the pain .but always got told that its normal.so the last docter that i went to see sent me for a scan.an in the scan they saw a lump. And inflamatin around it.so now i have been told to get it seen by a surgen .i have no idea how this happend.i was pregnant and got told i have had a miscarge.coz i bled alot.so after a cupl of days was my scan and i got told that there is a heart beat .and that there must have been two babies.
    Now whats in my mind is its got something to do with that .because the docters did not check me properly.my baby was even born 15 weeks early. Less then a pound her weight was. I am so confused what it is .its really bad pain like burning feeling around the lump

  35. hi Ana,
    I just came across your story since I’m home recovering from my surgery. I had mine on the 13th and barely getting out of bed without help. Still taking my pain meds though. I was also in pain for a few years before getting to this point. My doctor said it was the biggest endometrioma he has removed. It was 9 and a half centimeters . I’ve been draining blood from the incision since the day of surgery and he told me it’s the old blood and blood clots coming out and it might continue for another week or two. This recovery is way worse than c-sections . I hope you now have a normal pain-free life and that I get mine back soon as well.

    1. Hi,
      I’m having surgery in 3 weeks. Im really curious to hear how your recovery has been – can you share. Stacey

  36. Because of your post my 4 and 1/2 year of suffering in the most intense pain I have ever encountered will be hopefully coming to a somewhat close … I am praying that my surgery will go smoothly .. I am at my wits end.. I would rather have a 100 lb steel bar slam me in my shin then have to deal with this .. why ? Because though a steel bar to the shin would be extreme it would feel better then this and the pain would be one main intense part then get better.. this doeant get better .. it gets worse.. because of this post I was able to diagnose my self practically and tell the surgeon what I thought.. I asked him if he belive in God and he looked at me crazy .. that is because I literally prayed for an answer and your post came up. I too had my child in 2010.. it took over 4 years for me to get a proper diagnosis. . God bless.

  37. Hi ladies, by reading your stories, i got so much of information on my current condtion. I had a C-Section in 2000 and since 2011, i have been experiencing sharp pain at the right side of my stomach during the mensturation cycle. In Jan 2015, i decided to find out why and eventually had a CT scan. My Dr told me that i had a mass tissue 6 cm x 6 cm at my rectus sheeth muscle wall. Following a biopsy the Dr confirmed that it is an Endrometrosis. Afterthat i was referred to Gyne and since Sep 15 i am placed under Hormone pills to treat endrometrosis. But i consulted a surgeon for an alternate plan which is to have a surgery instead. But my surgeon is very reluctant to do for me. He warn me that the surgery is not an easy one and may cause complication as the cut will be deep and to close the hole he will use a mesh. I am currently 44 years old and he add on that in few years time i will be going through menopause where the endrometrosis will shrink. So he suggest to just leave and not to remove it. But now I am suffering in the throbing pain :((

    1. Hi Siam,

      Thank you for sharing your story with us.
      How are you feeling with the hormone medicine, are you noticing a difference in the size of the mass? It seems the medicine is not helping you with your pain….
      How are you treating the pain?

      I opted for surgery as you probably read (8cm of my rectus muscle removed and repaired with mesh). So far no pain, no re-occurrence I feel great.

      Take care,
      Ana

  38. Hi Ana and everyone,

    My History: November 2007 – Laparoscopy to remove cyst and confirmed Endo and cleaned it out
    September 2008 pregnant – June 2009- First C-section
    September 2012 pregnant – May 2013 – Second C-section (3wks early)
    November 2014 – Cycles returned
    April 2015 – Pain started in on C-section scar
    June 2015 – Noticed lump during cycles in addition to pain

    So I put it off for a few months thinking it was just a new pain. I have always had pain with my cycles bc of my Endo, unfortunately have learned to live with it. In June I noticed the lump with the pain. Again not giving it too much attention until it started paining me when my daughter would hit with her foot while carrying her, or laying on my stomach, or bumping into the counter when washing dishes or my hands. The pain is only there 2 days before my cycle starts, and then the entire time I am on my cycle, and a few days after. Total I guess it ends up being 15 days/month But it has continually gotten worse in the amount of pain and size of lump that comes and goes swells during period only. So I made my first apt. Of course you cant make your own apt for an Ultrasound so I had to go back. 2nd apt, tech only did a vaginal ultrasound. Spoke with doctor, not visual on US, lump and pain not very noticeable off cycle so I made a 3rd appointment and went back during my cycle.
    Guess 3rd times a charm, lol. He immediately felt the lump, and with my history has stated that he believes it is my endo. that has settled into me c-section scar. I of course thought this all along, but the timing had to be perfect and he now agrees.

    Here’s my dilemma: I want nothing more than to have a 3rd child. My husband not so much :( I do NOT want to basically have a another c-esction (minus delivering a baby) though if there’s a chance my husband decides he’s ready then go through a 4th one (delivering baby) I dont want the extra risk.

    What I need help understanding though is:
    1. how much time do I have?
    2. What are the risk of waiting a year to either get pregnant or to just have the surgery to remove the endo problem?
    3. I know I will have to put up with the pain, but can this compromise my health in any other way if I wait?
    4. Should I go back to doctor and ask for a MRI?

    I can’t find this information anywhere. I know I will likely have to make another appointment with my doctor to get answers but I am hoping someone can share their insight and experience.

    Regards,

    Amanda

    1. Hi Amanda,

      Thank you for sharing your story with us and I’m sorry to hear about all your mishaps.
      1. I would defiantly get an MRI with biopsy to figure out where and how big is your endo mass.
      2. Being a progressive conditions, the mass slowly grows and pain intensifies. That’s the reason you should consider an MRI.
      3. During pregnancy the mass stops growing.

      I hope this helps. Please let me know if you have any other questions….

      Take care and best of luck,
      Ana

  39. Hi Ana,
    I’ve just spent the last hour reading every post on your blog. In 2012 I had my 4th caesarean, a very complicated, slow process due to scar tissue. For the past 5 months I’ve felt a very tender lump on the left side just above my scar, it has gradually been worsening each menstrual cycle beginning at ovulation & lessening after my period. 3 days ago on Christmas Day the pain was so much that I couldn’t function…I could barely talk. I too have seen an Obstetrician & Gps who have basically implied it’s my fault for having had 4 caesareans, each saying that scar tissue causes the problem. Today I will book back in & enter my next appointment charged with your blog & will refuse to leave until an MRI has been booked. My big fear is that they won’t want to do any surgery on me to remove the mass bec of the all of the last caesarean issues… but I will sort through this. Thanks for caring enough to write your blog,
    J

  40. I’m so happy I found this site. I had my son via c section almost four years ago, I now suffer from this awful disease. I cry every month during my period from the pain, the mass continues to slowly grow. My obgyn has diagnosed it correctly and told me that surgery is the only way he can remove the mass. Unfortunately my employer doesn’t provide health insurance and I get told that I make too much money to qualify for medicaid. So now I am left crying and hurting every month over the pain and the fact that I have no money or insurance to help take care of this issue. I am hoping to look into a women’s clinic that’s based on income , but until then I’m comforted in the knowledge that I’m not alone in this fight.

  41. Hi, im nadia, right now im waiting for patology result about my “something” removed from my under skin area scar c-section. IT was removed out because I had 2nd csection birth my 2nd child on 16/12/2015. The lump I had from my csection during birth my 1st child 6 years ago. Acctually after I realize that I had the lump & the symtom pain I went to the doc Ob-gyn, the doc just said like what is your doc said. “It was stubborn fat” “nothing to worried” it was uncomfortable for me, sometimes feel itchy that area, back bone pain during the ovulation days and look ugly when the colour of skin became dark at the lump area. After 6 years, Until I had my 2nd c-section at 16/12/2015 the doc, still do not know what was it, he just remove out the mass that he can. The doc said it is to deep and cannot remove out all the mass because it nearby the cut to take out the baby. So the doc left the balance mass. The ‘mass cell’ was sent to the patology, before I readyour story, Everything is come around my mind mybe its a tumor, lipoma, skin cancer, I’m stressed. Now I felt more calm because your story & what was happen to me, acctually I had iatrogenic endrometrosis.. but I still worried about the cell result, please pray for me, and I believe I was had iatrogenic endometrosis not a cancer. I also afraid about the left mass. I want to tell my ob-doc about iatrogenic endometrosis, I belive that my doc doesnt not know much about this. I dont want he make a false diagnose at me.

  42. Hi, im nadia, right now im waiting for patology result about my “something” removed from my under skin area scar c-section. IT was removed out because I had 2nd csection birth my 2nd child on 16/12/2015. The lump I had from my csection during birth my 1st child 6 years ago. Acctually after I realize that I had the lump & the symtom pain I went to the doc Ob-gyn, the doc just said like what is your doc said. “It was stubborn fat” “nothing to worried” it was uncomfortable for me, sometimes feel itchy that area, back bone pain during the ovulation days and look ugly when the colour of skin became dark at the lump area. After 6 years, Until I had my 2nd c-section at 16/12/2015 the doc, still do not know what it was, he just remove out the mass that he can. The doc said it is to deep and cannot remove out, all the mass because it nearby the cut to take out the baby. So the doc left the balance mass. The ‘mass cell’ was sent to the patology, before I readyour story, Everything is come around my mind mybe its a tumor, lipoma, skin cancer, I’m stressed. Now I felt more calm because your story & what was happen to me, acctually I had iatrogenic endrometrosis.. but I still worried about the cell result, please pray for me, and I believe I was had iatrogenic endometrosis not a cancer. I also afraid about the left mass. I want to tell my ob-doc about iatrogenic endometrosis, I belive that my doc doesnt not know much about this. I dont want he make a false diagnose on me.

    1. Hi Nadia,

      Thanks you for sharing your story. Like so many of us you have been misdiagnosed or disregarded about your scar endometrioma mass. I would suggest getting an CT with contrast or MRI with biopsy for an accurate diagnostic.
      Good luck and keep us posted!

      Take care,
      Ana

  43. Hi Ana

    I’m 65 and had two caesarians 14 months apart 30 years ago. The first one resulted in excruitiatingly painful sex that made it a very rare occasion. After the second caesarian I fell downstairs shortly after arriving home from the hospital. I returned to the hospital and was told that the scar had not ruptured. However, it “healed” with massive lumps and ridges. I was unable to have sex again but – hey ho – my marriage ended shortly afterwards anyway.
    I have been to the doctors several times over the years and had many ultrasounds, all of which reveal “nothing abnormal”. I have mentioned adhesions to my doctor several times but they look at me as though I’m an alien and just brush me aside as though I haven’t said anything, and I’ve just been worn down and got on with it. Like a lot of you, if I lift anything too heavy I get the most excrutiating lower back pain, kidney pain and changes in urine flow, so it must be attached to my kidneys and/or bladder. But nobody’s interested – I can’t understand it. At 65 I’m resigned to living with it for the rest of my life, the enjoyment of which has been severely curtailed from time to time.

    I notice that there’s a website which specialises in deep tissue massage. I was always terrified of making it even worse, but it does seem to help stretch it back into position. Please try it, along the scar line . . . . I understand that scar tissue is very thick and lacks the elasticity of other flesh, so manipulating it could make it a little more bearable.

    Best wishes to all who share this debilitating condition. . . xx

  44. So glad to find this post. Had my youngest 11 years ago and about 2 years or so afterwards I have had the swelling etc. On my scar. In terrible pain at the moment as I’ve just had a period. Will start to look into it further. Thank you ladies and best wishes.

    1. Hi Dawn,

      Your Endometrioma mass is a progressive. Remember as the mass slowly grows, your pain will get worst.

      Good luck!
      Ana

  45. Hi
    My name is liz. I had mine removed last week and three days post surgery, I find it difficult sleeping on my left side. There is a pain on my lower left abdomen and at the back. I am getting worried, could this be after effects of the surgery

    1. Hi Lizzy,

      Your pain should slowly start going away. Just like any surgery, it takes time to fully recover.
      How are you feeling now?

      Take care,
      Ana

    2. Lizzy,
      I am having surgery in 3 weeks – I’m curious if your Dr did a horizontal or vertical incision.
      Hope you are feeling better

  46. I have just been diagnosed with endometriosis of my left abdominus rectus muscle. I had my first C-section in August, 1997 and my second C-section in December, 2000. This is where my story gets a little crazy. While I was pregnant with my daughter, I had to have my appendix removed November, 2000. They cut me vertically from just under my breast bone to my previous C-section scar (my daughter was a high risk pregnancy due to a birth defect). Then not even a month later, I had the second C-section. After lots of tragedies in my life (losing both my parents in a car accident in 2003 and losing my husband at the age of 36 in 2007) I decided in May, 2007 to do something for me and get that long, big, thick, ugly scar removed so I scheduled an abdominalplasty. I started having difficulties not long after my abdominalplasty but I just assumed I started working out well before my surgeon had recommended. I’ve dealt with the discomfort that is now annoying pain especially during and right after my menstrual cycle and dealing with the lump in my lower abdomen that shows when I wear anything tight which I thought was the mesh the plastic surgeon had put in place to hold everything together. As it turns out it’s the mass of endometriosis attached to my ab muscle.

    I know it has to be removed but I am so hesitate to have the surgery since this is such a rare procedure in itself and then add on the fact that I have this mesh already inside of me. Ugh!

    Can anyone tell me what the surgery was like? Was it a huge incision? Can you tell me where the incision is? How long was recovery? Was it any different than a C-section surgery?

    Thanks in advance for the information.

    Candi

    1. Hi Candi,

      Sorry about all you mishaps.
      My surgeon used the same c-section incision. My abdominal wall was repaired with FlexHD mesh, I’ve had no problems with it. Recovery is different from person to person, mine was about two weeks. I’ve experienced the same abdominal pain as my c-section recovery. Let me know if you have any more question. Good luck!

      Take care,
      Ana

  47. Thank you for your stories! I am having surgery to remove a >3cm likely endometrial mass from my right abdominal wall on Tuesday. (2 c- sections, but real pain did not start until 6 years after 2nd c-section) Started as a burning pulling pain every month and now up to dibilitating when even standing pain. Can’t wait to end the monthly chronic pain. I just had a hysterectomy 4 weeks ago for fibroids, but this was my biggest concern. Doctor knew that but hoped hysterectomy would help. Kept my ovaries so here I am on my first “period” after hysterectomy and the mass hurts like crazy. If I sneeze it feels like a grenade exploding in my abdomen. Been dealing with it for 3 years, but just thought it was scar tissue. So thankful my doctor was on top of it and I did not have to beg and suffer mentally searching for answers as some of you have. He knew exactly what it was. This is thanks to you for sharing your journey and public website to bring awareness to this issue. Thank you so much. It has given me validation and calm to know it happens to others, I am not alone. Hoping for an easy removal. Much love!

    1. Tina, how did it go??? I’m having my surgery in 3 weeks. Did your doctor do a vertical or horizontal incision??

  48. Hello, I’m currently going through the process of confirming scare tissue endometriosis. My obgyn immediately referred me to a obgyn surgeon since he didn’t handle it. From that point of its been frustrating as once I finally found someone to help me, he actually seemed to want nothing to do with the case and is trying to pass it off. Two wasted visits, a ultrasound, a confirmed .5″ lump and still he is talking in circles to avoid it. So I called my obgyn for a second opinion and now he says he can’t say anything duelse to conflict of intetest. Are you kidding me? So I have yet another apt to try and figure this out. Fingers crossed. After th I should I will switch to a general practitioner or surgeon so hopefully there will no longer be a conflict of interest. I’m upset and hurt that none seems to want to help me. It’s almost like they are trying to wash their hands clean of a possible malpractice lawsuit. I just want help! I’m so tired of suffering every month. It’s getting progressively worse. Has anyone looked into a lawsuit. I don’t want to but my mom keeps pushing it

    1. Hi Heather,

      I feel your frustration. Being misdiagnosed, tons of run around, misguided information, mistreated, you name it I know it. No current lawsuit on this matter, no lawyer will take this type of case because they don’t want to invest so much money on research for something they don’t know if they can win…
      A general surgeon might help with your surgery.

      Good luck and keep us posted!

      Best wishes,
      Ana

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