Abdominal Wall Endometriosis Enigma

Ok, I was diagnosed about 4 years ago. I had been symptomatic for 3 years prior. I noticed a small lump in my abdomen. As time progressed it got larger and tended to feel sore to the touch. So if I leaned on something , it would hurt. I had sonograms, vaginal sono, ct scan, colonoscopies x3 and they could find nothing. I had a lap. They did biopsy and found endometriosis. It had attached itself along my c-section scar and thrived off the estrogen I produced each month. A hysterectomy would not solve the problem because the implant is in my abdominal wall. The pain is crazy. Every thing in life began to revolve around my cycles and 10 days after, because even though I stop actually bleeding in 5 days. The implant then decides to act like a uterus, but there is no place to bleed out , so I bleed internally, causing more scar tissue and more pain. I tried Lupron shots for 6 months. It did help the pain, but the side effects are unbelievable. I find that accupuncture helps. I am now just holding out for menopause. Who prays for that? I was told when my estrogen levels drop, the pain will stop because the endometrioma feeds off the estrogen you produce. No one would ever believe the pain, both physically and emotionally this monster causes. Last resort is surgery to excise the deeply embeded endo, Then I would have to have part of my abdomen replaced with mesh. I am 44 and I have 3 children. Life is demanding, I can't afford to be an invalid. I just wish that someone in the medical profession would do something to publicize this strange phenomenon so that they can find another way of treating this disease.

11 Replies

  • Hello,

    I've got abdominal wall endo as well, came through my c-section scar, I had it removed last year and it's grown back, waiting for my 2nd op begining of december. It's quite rare - they initialy thought it was a hernia & I had to really fight to be referred to gynea, the first consultant had read about the condition but had never seen it before me, fortunately I was refered to her senior who has taken quite an intrest in it (fortunately for me)

    I can't wait to have it removed and I'm really hoping they get rid of it for good this time ( I had about 6 months pain free last time) they've told me the recovery time is between 2 and 4 weeks - I've got a 3 year old & I'm going to be recovering over christmas - really not ideal but I'm hoping a few weeks out of action will be worth it.

    I hope you manage to find the best solution for you x

  • Hi i too have this condition ive just had my second lump removed a week ago it was attached to a muscle in my hip aswell as my section scar. For me having the lumps removed is the only option as it gets rid of the pain. Now ive had two my gyne wants to start treatment to try and stop these from growing. He wants me to think about a monthly injection to stop my ovaries working at 36 im really not kean but do i really want to go through all this again. I really feel for you as will Penelsk the pain is unbelievable. Ive spent hours upon hours researching this and as my gyne said to me the only cure is menpause. I hope your sorted out soon and pain free xxx

  • It is very unfortunate that this has happened to you. I had monthly injections and the side effects were horrible. The pain did go away, but I had hot flashes, night sweats, bad attitude, no sex drive and hair loss. Some choice---pain free or bald and sweaty. Call me crazy, but I was so glad when the side effects finally wore off and I got my monthly cycle. After the injection, I chose to do acupuncture.

  • Hi again December ive been thinking about your story and i cant understand and am shocked that you havnt been advised to have this lump removed sooner???? Every piece of research i have ever come across has concluded with the only treatment being wide exision of the lump. Tests have proven that treatment doesnt work. With both my lumps ive have two gyne's whos only response was exision. I was lucky with my first lump it was very big but didnt cause any damage to my abdomen. The second resulted in a repair to muscle but still i was lucky. Surely the longer yours is left the more damage it will cause?? I dont know how you live with the pain. Although my wound is still healing im back on my feet and if i take it carefully can carry on as normal, my op was done on the 15th. I hope your getting the right advice and have a good gyne and believe me the thought of not having that same pain month after month far outweighs a few weeks of recovery. Let us know how things go for you xx

  • I was advised that the best solution was wide excision of the lump as well. However, my lump is not just a lump. It resembles marble similar to what you find in ground beef. My surgeon did explain to me because of this, he could not guarantee that all of the disease would be removed, and it would probably grow back. Also having most of my fascia tissue removed and replaced with synthetic mesh is kind of scary. He explained that by having this procedure could make me a candidate for a hernia. So I chose not to have it done.

  • I understand. everyones different. I just feel for you living with that kind of pain. Both my lumps ive had have been solid and calcified. unlike my first consultant my new one has had experience of these lumps although not many he cant garentee i wont get anymore. I couldnt live with one of these in my body. I think your brave to do so x

  • Hi everyone, the endo within the uterus may well be adenomyosis that has not been diagnosed properly!

    Please feel free to visit the adenomyosisadviceassociatio... website and join the Facebook and Twitter pages to get updates on correct diagnosis by MRI scan and info on how to cope with adenomyosis and the best way to get treatment and for support during your journey x

    Take care,

    Danielle Wright

    Founder ~ Adenomyosis Advice Association Founder

  • Hi, anything is worth considering, I have had mesh fitted in my abdomen for 20 years and it can be done, the main thing is to try not to put on any weight or it could strain the mesh, which is difficult for me as in the menopause after hysterectomy I put on 1 and half stone! The only prob with mesh is that it can make abdominal surgery later on more difficult, although it is possible still to have keyhole surgery.

  • I am reading this because I can relate I to have a lump about 4inches wide near my ceaser scar and the gyno is planning on removing this soon , the pain is hurendous it starts a day or so before my period but can last upto 12 days after my period it stings and pulls and burns and I get strange stabbing sensation I also feel it has got worse as the pain has spread and now it is in my groin , I see my Gyno on the 18th and then the operation will be put through . I dont even know whats going on or how bad it has got but my hip hurts and my groin ,. it is such a relief to read other people can relate xxxx

  • Hello December67 - Abdominal wall endometriosis is a rare condition that is often not recognized. I have been fortunate to be able to help a great number of women with this condition. Excision is the way to go, and leads to complete resolution of symptoms in almost all cases. As you say, in some cases mesh repair of the abdominal wall is required, but this is really more of a temporary nuisance than a long term issue.

    The most difficult thing about this condition is making the right diagnosis. Most doctors miss it because they just don't know much about it and don't realize what they are looking at. Once the right diagnosis is made the problem can be resolved.

    I wanted to let this fine community that I am ready and willing to help anyone with this condition at my office in Pearl Women's Center in Portland, OR.

    Nicholas Fogelson, MD

    Gynecologic Surgery

    Endometriosis and Pelvic Pain

    Pearl Women's Center

    Portland, OR

    (503) 771-1883

  • Hi, I have been living with the pain and lump for almost two years now. I had my csection almost 8 years ago. I finally went go the gyno and had a ctscan. He stated that it was an endometrioma on my abdominal wall and that they will do a quick 10 min surgery to have it removed. Since the pain begins a few days before my period then lasts and worsen during my ovulation, I asked if it was affecting my overies and he said that he couldnt confirm if I have endometriosis too. I was confused by this. He advised that they could do a laproscopy at the same time to check my reproductive organs out. But its all up to me to decide if I want to both or not. My concern is that they will remove the lump and that the pain will persist since it hardens and hurts during my menstrual and ovulation cycles. Furthermore I am 28 and would like to have another child so infertility scares me. I guess my question is, is there a likelyhood that the endometrioma can cause or lead to endometriosis? Or attach to more then just the wall of my abdomen?

    Any responses are appreciated 😣

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