The Unknown Cesarean Risks

Welcome

My name is Ana and I am 34 years old. Four years ago I had my first child delivered by C-Section. I never thought that my health would take a radical turn from an “overlooked” cesarean risk.

During my cesarean section, I was implanted with endometrium tissue (uterus lining) in my abdominal rectus muscle. I spent the next three years in extreme pain. I was seen by OBGYNs and general physicians for my lump and symptoms in over 30 visits, only to be undiagnosed or misdiagnosed over those three years. I kept telling the doctors to check my lump, but the doctors kept saying, “Scar tissue has no symptoms.”

None of my doctors ever checked to confirm that the lump was not scar tissue. During those three years my lump grew. When I finally got diagnosed the doctors told me that the lump was an endometrioma mass that grew and attached to my abdominal rectus muscle. When I had my surgery to remove the mass, surgeons had to remove 8 cm of my muscle, the muscle sheath, vein complex and the inferior epigastric artery.

I no longer have pain from the endometrioma mass, but I am left with a permanent herniated stomach, incapacitated from many daily activities, and cannot carry another pregnancy. I have no pelvic endometriosis; the endometrioma mass found in my abdomen was the direct implantation of my endometrium cells 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 though all along I was pointing at the problem.

I’m sharing my story, in the hope of raising awareness and informing the public of this overlooked cesarean risk, to help change the outcome for other women.

Please take a moment to read my story

My Mission

My mission is to raise public awareness of this overlooked and misdiagnosed cesarean risk. Women and doctors need to know what to look for when postpartum problems arise. Doctors need to be well aware of this condition, so women can get early diagnosis and treatment, which is vital with this progressive condition.

Comments

  1. I am in the exact same position right now. After ultrasound and MRI they are saying it looks like endometriosis in my abdominal muscle. I can’t move most days. The pain is extreme and so frustrating. I thought after 8 years it would’ve spread throughout my pelvic area? I can’t wait to have whatever it is removed. Is your life different now?

    1. Hi Deanna,

      If you have an endometrioma mass in the abdominal muscle wall (cavity) transferred via cesarean 8 years ago with no pelvic endometriosis than it’s confined within the abdominal wall and it’s protected by parietal peritoneum. The pelvic area is in a different cavity (comportment), I hope this explanation helps. If your MRI shows no endometrioma mass in the pelvic area than the endometrium tissue was transferred in your abdominal wall during the cesarean.

      My life has other health challenges from removing such a radical size of my abdominal muscle but I’m glad I had the surgery. The pain of the endometrioma mass is much greater than anything I have experienced.

      Let me know if you have any other question, I am happy to help.

      Take care,
      Ana

  2. I have this as well. I had my son 4 1/2 years ago. I kept telling the doctors something wasn’t right and they just brushed me off. Now I am going to see a specialist and hopefully get this removed . I live in pain everyday and it us growing . I think now it is so big it’s in my pelvis:( I hope I can finally get some pain relief.

    1. Hi Bridget,

      Hang in there Bridget, once you remove the mass the pain will disappear.

      It’s hard to accept that this gets so easily brushed off by doctors. It’s incredible how many women experience this and still doctors never included as part of the diagnoses. I wish that media outlets would pick up this topic and bring much needed attention. Too many women suffer and are turned away with no medical treatment until years pass and these masses grow. This overlooked cesarean risk really needs the attention of the medical community, what are they waiting for…

      Take care,
      Ana

  3. I have the same thing and diagnosed myself before a. Mri confirmed it. Mine is 9 cm in my ab muscle as well. We are trying to get pregnant to have it removed after another c section rather than cut me twice

    1. Hi Emily,

      That’s a big endometrioma mass, so sorry to hear. How long have you had it for? Have you talked to any surgeons about removing the mass at the time of cesarean? Keep me posted.

      Take care,
      Ana

  4. Wow I am so glad your spreading the word about this and I’m so sorry for what you have been through! I had a laparoscopic scope for endometriosis about 5 years and about 2 years ago I had a lump come up behind one of the scars, this lump has grown and I am in terrible pain with my monthly cycles, my ob has tried to tell me it’s just scar tissue and brush it off for the past 2 year, he finally did an ultrasound and has agreed to remove it he no thinks it is endo, My surgery is next week and I am so happy to finally not have to deal with this pain. I’m so sorry that your case was so extreme and your pain was ignored. Your article gives me comfort so I don’t feel so weird or alone with this.

  5. I have had a growing painful lump just above my csection scar. After numerous tests a needle Biopsy was done on the mass and it is endometriosis. I’m scheduled for surgery this Friday. I’m scared I’m making the wrong decision based on my general surgeon considering it an elective surgery. please tell me it will stop this constant pain all the time. Any relief in lower back pain? So glad I found this site.
    Jessica

  6. Hi Ana,
    I came across your site recently and you don’t know how happy i was to read something from real people that had or are experiencing the same as me. I am struggling to deal with all this because unfortunately I am still in the stages of getting an answer. I have felt so alone and immensely frustrated that my doctor looks at me like it’s all in my head.. I am now waiting to see a professor that specialises in endo and am officially done with my obgyn.. I had my 3rd c section 2 years ago and have struggled with this issue since. I have thought about starting something lately like you that can support and inform other women because that is something that I really need in this situation. So thank you for doing what you have to bring awareness and to let other women know they aren’t alone and they aren’t crazy either. Please please email me as I would so live to connect with you or anyone else that is going through or had this…
    Thank you
    Kara.

  7. Hi Ana,

    I recently returned from my followup appointment this morning. I am 2 weeks status post surgery for an intramuscular abdominal wall endometrioma excision.

    I had twin girls via C-section almost 6 years ago. Since that time, I developed pain in my right abdomen. Went to doctor, ended up undergoing a hernia repair… the problem was still there after recovery. Went to doctor again, then to OB-GYN, ended up having a partial hysterectomy… the problem was still there after recovery… suffered for over a year and finally went back to doc… surgeon decided to go in and remove the lump. It was embedded within my abdominal muscle and 5 cm of my muscle were removed with the endometrioma. My abdominal muscle was pulled together and then a mesh on-lay was placed over it before closing me up. I hope this works. I would wish that pain on no one.

    Good luck.

  8. Hi
    I’m so relieved to read this
    I had 2 sections 12 and 10 years ago. For the last 4+ years I’ve felt like I have something restricting me in the left side of my lower abdamon (kind of overhang above my scar)
    I constantly have pains in my leg and awful lower back pain. The pain and discomfort often apears to come and go, I now realise that this is during my period.
    I’m going to go back to my gp after reading this and request a Mir scan to see if this is the case and then hopefully get it sorted.
    Thanks for sharing this and raising the awareness
    Nichola x

  9. I just went through a very similar situation after many years of fighting with doctors that I was in pain & something was there, uncomfrotable, and justt all around miserable they finally diagnosed it after removing it, and in less then 6 months it came back, and entangled into my stomach muscle bigger, and more painful….I had it removed June 30th, along with my remaining ovary, still healing, and adjusting to life with menopausal symtoms. Since I can only be on a low dose of estrogen right now. Many blessings, and best wishes to any women who has dealt, or is dealing with this.

  10. I’ve been in constant pain on my left side after my 4th Csection, it’s been 4 1/2 years since my son was born, and I’ve been told it’s scar tissue just massage it, my left side of my scar is getting black and purple I’m getting worried, now that I’ve read this article it all makes sense, there is no way it’s just scar tissue, this pain never goes away, I can’t excersise, or lift anything heavy it makes it worse
    I’ll be making an appointment tomorrow. Thanks for racing awareness! !

  11. Hi ana. I had dobe the c scan and to be sure they told me to do mri to confirm i have the endemotrosis i had a laparoscopy and some tissues were removed then after i was pregnant with emergency c section and after a year my child was born i noticed this hard lump in my muscle of the abdominal left side.im very streesed and sometimes im feeling uncomfortable in certain moves and positions and a bit of sharp pain should it be endo or something else im very worried waiting for mri to be done sorry for writing long and thx

  12. Hi Ana,
    I am having surgery on September 1st to remove an endometriosis mass in my right rectus abdominis muscle.
    I had surgery June 14 to ‘remove’ it but I think it was merely scraped from the surface despite my surgeon being adamant that he has done a good job.
    I literally knew within 24 hours that my endo pain was still present.
    Having had 2 c sections I knew the difference between the pain of surgery and the ‘machine gun’ like shooting pains of my mass.
    After a slight battle (i’m sure he just thought it was my imagination covered in scar tissue) followed by 2 second opinions and another Mri it was finally proved that not only was my lump still present, it was actually measuring bigger than before.
    Am I right in thinking that uou are now 12 months post op?
    How are you?
    Are you still finding that your everyday life is affected as a result of surgery?
    Where are you now treatment wise?
    I hope you don’t mind all the questions but I am extremely nervous.

    1. Hi Sarah,

      Sorry to hear about your surgery not going well. I can’t even imagine what you must be going through…. So what’s next plan?
      About me… well I am at 2 years post surgery and I can finally say I am feeling good (physically and emotionally). The first year was tough for me, the emotional part took a toll. The physical part I had to readjust to my new bio-mechanics. I went through one year of physical therapy and counseling, it helped me a lot. This year I started working out (baby steps, which I excepted mentally) and I am feeling better and stronger again. I had two CT scan and one MRI since my surgery. No re-occurrence and no symptoms! The mesh has integrated, it’s gotten thicker with my own tissue and the affected muscle has grown scar tissue at the end. Things are looking good. I am very thankful to my general surgeon, he did a great job. I’ve excepted that my body will never be the same, now I have some low back and hips pain but I can live with that! I can’t ever imagine to experience that endo pain again!

      Take care,
      Ana

  13. Ana,
    I can completely relate. I also developed endometriomas in my abdomen. I went through YEARS of pain and misdiagnosis. It was so frustrating, and the pain was solo real yet I felt crazy because I felt like the doctors didn’t believe me. The doctors said the pain was caused by fibroids and cysts and that there was nothing they could really do. When I got pregnant the second time I miscarried. The third time I got pregnant, which Incarried full term, the pain stopped my entire pregnancy. I had a csection with this pregnancy too, and while the doctor was in the OR he found the masses. Two masses, one on each side of my abdominal wall. They were the size of golf balls. I cried tears of joy because I felt validated. I wish there were more we could do to help people in the same situation we have been/are in. I have a lot less pain now that the masses are removed. However it has caused me to loose a lot of confidence in physicians. You are your best doctor! God Bless!

    1. Hi Angela,

      Thank you for sharing your story and I feel your pain and the confidence lost in our medical community. That’s the reason I started my mission on raising awareness of this misdiagnosed condition. One step at a time and maybe one day we will put an end to this.

      God Bless and best wishes!
      Ana

  14. I just want to know if any of you ladies mass have our had blood vessels circulating through it? I have to go in Monday for the biopsy to be done but I was concerned because she thought it was strange to have blood vessels in it. Help please 😢

    1. Hi Sherita,

      The endo mass is composed by endometrium tissue formed outside the uterus. So, it is an organ which requires blood supply, it feeds of it. In your MRI/CT/UltraSound the mass will show blood flow. Also depending on the location of the mass, your arteries might be in the intertwined with the mass. For example in my case; the surgeon had to cut my epigastric artery because it was intertwined with my mass. Please discuss your concerns with your general surgeon, he/she will be able to answer all your questions.

      Best of luck!
      Ana

  15. Hi there,
    I have just under gone major surgery for a large mass of endometriosis that was also caused after a c-section 4 years ago. This was my 3rd section and everything was fine with the other 2. They removed a very large mass and some muscle and also put in a 20x15cm bit of mesh in. I am still obviously in recovery as it was only nearly 6 weeks ago but i can already feel the difference. The pain started nearly a year after my last c-section. A lump appeared in the left hand side of my scar. Went to the doctors and the said it was just scar tissue.. started exercising more and more and the pain was getting worse. Especially on my period or ovulation time. Went to the docs again. went for an ultra sound.. nothing just scar tissue. i kept going to the docs and had another 3 ultra sounds ,internal and external and a ct scan…. my ovaries were fine and so was my womb and the scar tissue was nothing to worry about? Ahhhh that made sense now….it was all in my head?? went to the doctors and got given period tablets but they were no good!! between the scans i was also going to the doctors complaining about my back pain,hips,legs and feeling low and hurting. i just got given anti-depressants and the more i went the more they just upped them! They thought the pain was in my head!! i was starting to think i was going crazy!! On another visit to the doctor after my ct scan, she said that it was nothing as thats what the hospital said and just offered me painkillers which i refused and told me to go see a private doctor if i wasnt happy with the outcome.(i’m from the uk) I was telling her it was endo but she said no because endo doesnt hurt all the time and the scans were clear and just showing scar tissue. I was absolutely gutted….i searched the web for a endo specialist around my area and found one at the local hospital. Told the docs and asked for an appointment, but no. i ended up seeing the endo specialist privately and as soon as he did the ultra sound he spotted the endo!! i cried! It wasnt in my head (which i knew) but someone had proof! he said it was secondary endo and explained it to me and got the ball rolling for me to see a surgeon to get rid of this as it wasn’t a gyno problem because it was secondary. After having an MRI scan you could see the extent of the mass as it had grown bigger and bigger and entwined in my muscles, so no wonder it was hurting and even more so when i did sport. This operation would not have happened if i hadnt have trusted my instincts and found an endo specialists. luckily i only had to pay for one appointment with him and was sent right back into the nhs. This took 3.5 years but how long would i have to of waited if i hadn’t gone private? It makes me so sad to think of all the women out there with the same problem and the doctors making you believe its all in your head. I wish you all luck and good health. Since the op does anyone still get a bad back and hips when on a period? As i still have these symptoms just luckily none on my scar tissue anymore?

  16. Hi, thanks for sharing. I also have a similar endo lump. It was misdiagnosed for over a year and was only finally diagnosed as endometriosis after a biopsy at a cancer hospital!! I too was told it is possible to remove via c-section so we are considering whether to have third baby now or get lump removed first. Seeing as this condition is obviously more common than most doctors think the risks should be fully explained to patients. I am either considering surgery to remove it or waiting for menopause to kick in!! Not great options.

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