chelsey10 years ago

hi i have been living with endo for about 15 years if there was a cure im sure i would have found it by now some days i cant even get out off bed i bleed every 8 to 10 days get a full hysterectomy done what have u got to lose but find out the side affect,s before you go under good luck mate

Flo10010 years ago

Hiya thanks for commenting. I do feel for you ive had this for nearly 5 yrs. was told it would be impossible to get another lump and very unlucky. I think it will be hysterectomy or abdominal wall resection or both. I have case studys being done on me right now as its so rare, feel like a freak!! Lol i was totally uaware of endo before this and the pain that goes with it. Its a horrible desease wish more people were aware and understood it x

Chrissie6610 years ago

Hi Flo

The first time I had ever heard of lumps like this was you when you discussed it on here before. Wow! I mean, it's obviously not pleasant, but to still be learning new things about endo after 20 years living with it is fascinating. And don't feel like a freak, you should feel special - just think, you might be paving the way for treatment for hundreds of women after you!

Just something to think about though - you say that the lumps feed off of your hormones and grow every month, which is basically how endo works normally. If you have a hysterectomy, you'll have to have HRT, and your endo will then feed from that. How then will having a hysterectomy help? You'll still be in exactly the same position as you are now, despite having had a major operation with all of the recovery time that that would involve....

As Chelsey has kind of hinted, there is no cure for endometriosis yet, there are only ways to manage it. If your consultant is adamant that a hysterectomy is the way forward you need to get a second opinion, because unless he knows something that thousands of surgeons before him don't know, he's wrong. Ask him how exactly taking your womb and possibly ovaries away will have any affect on lumps on your scar tissue and see what he says.

I hope they manage to sort something for you though. And on behalf of all of the ladies waiting for a cure, thank you for letting them make you a case study!

Lots of love

C xxx

december67 in reply to Chrissie668 years ago

I agree...there are studies done and because of the hormone therapy the surgery is in vain.

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Flo10010 years ago

Hi Chrissie

Thankyou for your comments. I have to stay hopeful for a cure for this as recurring lumps of endo like these have to be checked for malignancy. Its turning out to be quite complicated im really hoping this will be the last lump but doubtful. Your right about the case studies the lady who did my last scan had never seen this in her 25 year career and now has acess to my medical notes to help her and her colleagues in the future. You can imagine its quite a worrying time with so little info on this ive speant hours researching this and find myself educating others. The only prevention for this was to have my abdomen washed out after C-section! Too late now but surely should have been normal procedure? Xxx

Chrissie66 in reply to Flo10010 years ago

Did you have endo before the c-section though? Because I suppose if you didn't, they wouldn't have thought of washing your abdomen out (I now have visions of a midwife standing over you with Fairy Liquid and rubber gloves! LOL!)

Just think....if your case does lead to a cure, it could be known as the Flo Treatment! How cool would that be!! xxx

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Flo100 in reply to Chrissie6610 years ago

Lol! It is like a jet wash before they close you up. No as far as im aware i never had endo before. Realistically i dont think any of this will end up in a cure for endo. But im hoping they will be able to put a stop to my lumps recurring. Theres just not enough known about this. I can find other women who have had one lump of this kind but not recurrance xx

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Chrissie66 in reply to Flo10010 years ago

Hey, you never know! Your lumps might contain the one vital missing piece of the jigsaw. And even if they don't find a cure, you are personally helping the research, which is pretty cool

Endometriosis has been around since Ancient Greece and they STILL haven't found a cure. I know this is going WAY off topic here, but I have a friend who has a son with cystic fibrosis and they've recently made a massive leap in that field. I think we have to hope that with all of the medical advances going on they will find something for endo in our lifetimes. Probably too late for us, but in time for our daughters and nieces and grand-daughters xxx

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Flo100 in reply to Chrissie6610 years ago

I guess its pretty cool helping with research. Even today i went looking for more info on the internet and found some recent studies that have been carried out in America to help with recognising it in sonography really interesting to see that there maybe more cases than thought due to misdiagnosis. Ive been so amazed by the complications endo causes some women and even by these lumps growing so big have been attached to the bowel just like normal endo. Xx

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Chrissie66 in reply to Flo10010 years ago

If you can stand back and look at it impartially - which is hard when you're doubled up in pain!! - it's a fascinating disease in many ways. Like I said, after 20 years, I am still finding things out about it all the time. When I was diagnosed, there were just TWO books on the subject aimed at patients rather than doctors, so in that sense it's come a long way. But still a long, long way to go....xxx

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Flo100 in reply to Chrissie6610 years ago

I agree after reading hundreds of womens experiences and then their frustrations at consultants not really knowing what their doing and being so unsympathetic and not understanding when like you say its been around for so long, there seems to be a long way to go! Its a good job women were made to be strong xx

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Chrissie66 in reply to Flo10010 years ago

Amen to that! xxx

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batman8010 years ago

well I nearly cried when I read this for the simple fact I have something similar ,ten years ago I had a c section and one day a few months later I was stood and the most intense pain went through me and It took me to my knees and thats no exaggeration.I went to the doctors right away and was sent to hospital their first thoughts was a ectopic pregnancy or pendicitis after a few tests they came to no conclusion I wanted to go home because I had young children and went back for a ultra sound scan all that shown was a cyst on my ovaries ,so onwards I got by and I noticed my periods became more painful then a year or so later I found a lump the size of egg ,I went to the doctors and was reffered to a gyno (I thought it was a hernia) but no the gyno said it was when I had been stitched up as you know they stitch the uterus then the stomach, basically his words were part of your uterus has ripped out and fused together with your stomach muscles and it's trapped as scar tissue has formed around it ,the options I was given was full hysterectomy as a last resort but he said I could have c section again and they would dettach it from the inside and cut away the lump it would mean the recovery of a c section again and chance of more scar tissue forming plus from a cosmetic point of view I would have it would be visable ,to be honest I was not bothered about that but with small kids I could not afford to recover properly from the op so I chose to bide time till they was older with the help of painkillers and hot water bottles and hot baths ect ... when I went back to see my gyno he was with another gyno and he said why have you not had the operation yet ,I explained and infront of the other gyno he said "I did not say you would have to have c section " well I was furious as anyone will know with endo that if you could chose a option to remove the pain you would and I could not understand why he woudl he change his opinion and infront of another gyno make me feel like I had imagined what he said when I know thats not the case I told him I have had my friend with me and they heard you say it aswell I walked out and never went back so here I am every month varies in pain degrees I have problems with my bowels the lump goes very hard near my period and then pain can be labour pains what to do as I write this I am on my period and it's getting to me as it has before but my hip hurts aswell and my stomach is so sore but I dont trust my smarmy gyno's word and feel a little lost an have just learnt to grit it out any advice would be very welcome xxx

Flo10010 years ago

Hi. What your experiencing sounds very similar to my story. The pains are horrendous i used to end up on all fours as though in labour and couldnt stand straight without stabbing pains going straight through me. Towards the end i collapsed twice in the street. My first lump geew to size of an orange in four years. The new one in four months. I wS initially tod it was scar tissue. To cut a long story short i eventually paid privately for a scan and was very lucky to have a great consult carry this out and gave me a 99% diagnosis there and then. If i were you i would gather as much info on this as you can and go back to your gp or consultant and tell them your concerned you have this. I was told if id left it any longer it would have affected my other organs. Please dont try and put up with the pain it wont go away. I really hope this helps and please let us know how you get on xxx

batman8010 years ago

I will do that thank you so much ,yes I have had that pain you talk about and the amount of blood is crazy I think I sort of hit a brick wall so to speak when I coudnt straighten up for the pulling sensation you get when your in labour ,when I straighten myself with the help of a wall blood went down my legs to my feet ,it wernt pretty to say the least because I was under the gyno I told you about for many years then he said that I didnt go back and havnt seen a gyno for about 2years now I am only 32 I feel so awful when I have my periods but I do have the nack of putting on a brave face ( having kids you feel you have to )sometimes it gets to much hence why I have found this page ,thnaks alot for posting this as this gives me more insight and I will let you know what they say once I gathered my thoughts on it and more information as I took his word the lump was part of my uterus fused together with my stomach muscles and scar tissue has formed around it , but you have gave me food for thought on this thank you xx

Flo10010 years ago

If you do manage to find some info on this. You will also find that if the endo tissue has been left behind in your abdomen it can attach itself to any scar tissue which is why i also have the area around my navel scanned where i had a laparoscopy done. Limited invasive procedures as possible is a must as i already have twinges where i was recut on my section scar to get the original lump out. But of course nothing will show there until the lump gets bigger. My pains also go to my hip and back and bowels x

Flo10010 years ago

I was like you i have 3 children and put on a brave face thinking it was something i had to put up with. But you know your body and if the pain is that bad its time to do something. Good luck wirh everything xx

batman8010 years ago

sounds so similar it really does did you feel better once you had it done? you now have a new one ?I have had the same lump now for about 9years and it has not grown so maybe my gyno's diagnosis was right but I lost faith in him after telling me something for so many years then turning around and saying that infront of the other gyno , I was all set for having the op once my boys was older but like I said I walked out after he belittled me like that , maybe I should gather as much info as poss and go and see my gp and request to go to a differant hospital ? thanks for your reply xx

Flo10010 years ago

Yes it felt so much better once id got over surgery but only lasted untill i found this recent one and already the pain is as severe. Unfortunately after i was discharged in may my consultant passed away so have to start over with a new one. You may be right if you think it hasnt grown. But when my consultant removed the lump he was stunned by its size as much deeper than he thought and solid as a rock he couldnt cut it with a knife. He had only seen one other case in 20 years and was so sure i wouldnt get another. Fingers crossed for you xx

batman8010 years ago

what a shame so you are going to have to go through the whole process again, it's horrible and the only people who understand are those who have suffered with endometriosis I hope you get some relief soon ,and I will post back if I have any news thank you xx

daniellewright10 years ago

Hey everyone, just wondering whether you have visited the adenomyosisadviceassociatio... website Adenomyosis is endometriosis which grows within the walls of the uterus. It is also known as endometriosis interna. Please feel free to visit the facebook and twitter pages too x Danielle x

Flo10010 years ago

Thanks Danielle. Any extra information or support is gratefully recieved. During my last scan i had a full body scan and an internal scan for research purposes and my Uterus was clear i just seem to get the lumps on my scar. Have yet to find a website on 'Abdominal wall Endometriosis' or 'scar Endometriosis'

Maybe i should start one myself?? Thankyou xxx

missteal10 years ago

Hi ladies,

Sorry to hear about this, I have heard of endo in a c-section scar before and to me it kinda makes sense. To cut open a womb and pull a baby out the endometrium (womb lining) will get dragged through too and get lodged where you get sewn up right?

I've luckily never had to have a c-section however I'm wondering if one of my problems is related. I torn very badly when I had my son, from my vagina right up through my urethra and clit (ouchie yes indeedy). I now have two lumps in the scar tissue that has remained, one right by my urethra which makes it difficult to urinate and one just inside my vagina. Both get sore around the time of my period! sound familiar? I will talk to my gynea about it in october but im wondering if any other ladies have a scar down there with the same issues as me?

Hope you're all having a pain free day, I'm writing this from a very hot bath lol.

k x

Flo10010 years ago

Hiya. After my experiences i wouldnt rule anything out but it is very hard to diagnose scar endometriosis so if you are concerned this is your casemake sure it is looked into properly if not seen on normal scan an MRI is more effective xxx

Flo10010 years ago

Hiya. After my experiences i wouldnt rule anything out but it is very hard to diagnose scar endometriosis so if you are concerned this is your casemake sure it is looked into properly if not seen on normal scan an MRI is more effective xxx

Penelsk10 years ago

Hello,

I've got scar endometriosis from a c-section as well, got refered to a general surgeon last year for a painfull lump that they thought was a hernia, turned out to be endo, they removed the lump but didn't do anything else, suprise suprise, 12 months later and the lump has grown back to twice the size & is even more painfull. The jnr consultant tried to pursuade me to go on the pill but were ttc and I didn't get on with the pill when I'd been on if before - also found out online that it wouldn't get rid of it, she also said she'd never seen the condition before but she had read about it. I went back last week to see the senior consultant, as soon as she felt the lump she booked me in for another op, it's just over 2 weeks away so they've got me in really quickly which is good but a bit frightening, this time they're going to remove the lump (it feels like a big sausage under the skin) and the scar tissue that it's come through - so hopefully it won't come back this time, though she was concerned it had fused to my hip bone & intestines, I won't know about that until after the op 8/ fingers crossed though!

I've found that there's next to nothing online about this & was glad when I found your post (not that I wish it on you!) as I'd not been able to find any one else who has had it - did they remove the scar tissue when they removed your lump last time? - I've read that excision of the affected scar tissue is the only cure x x

batman80 in reply to Penelsk10 years ago

Hi did you have this op ? How did it go ? curious as in same sittuation xx

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Flo10010 years ago

Hiya. You are the second person ive come across in four & half years with the same thing. Its alike some kind of relief when you do!! I didnt have the surrounding scar tissue removed and the recent lump is on the other side but i do have the same niggling pains where old lump was (i think you'll understand, the stabbing and burning). I have an appointment on the 29th with a new consultant as my other one passed away. Im looking forward to seeing what he might be able to do to stop this happening but doubtful. Like you this lump has grown alot quicker and is more painful it needs to come out and soon. It would be really good to stay in touch with you as its so rare we can prob help eachother and ie your consultant may come up with something mine doesnt or vice versa. You are the only person i have found with recurrance everything else is case studies. Thankyou so much for leaving a reply xxx

Penelsk in reply to Flo10010 years ago

Good luck with your new consultant! Mine seemed really positivie that they can get rid of it all together this time so definately worth suggesting to yours! I've got my pre-op on the 28th so I'll fill you in all I can then before your appointment. As you say it'd be good to keep in touch. How did you get on with your first op - was your recovery ok? x

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Flo10010 years ago

Thankyou. I will suggest removing the scar tissue i had also read about abdominal wall reconstuction but sounds quite major. My recovery wasnt too bad the lump was solid and stuck to my abdomen so he had quite a job i couldnt walk for three days but once i was on my feet i got back to normal after about 3 weeks. I was on top of the world without all the pain so gutted it was short lived!! How about you? How long did you have the lump before it was removed? Xx

Penelsk10 years ago

I can't remember it being too bad, I was in & out in a day. I was waiting quite a while for the op though, must have been about 9 months from finding the lump to having it removed. It was wonderfull for a while but it was back again within about 4 months, it's frightening how much quicker it's grown this time. 3 weeks from now and it'll be gone again but I have an awful vision that it might keep happening each year, lets hope removing the scar tissue does the trick!

Flo10010 years ago

Its funny how similar our stories are this second lump had grown within 4 months after having the first romoved and i can tell its grown so much bigger than when it was scanned and so painful. Like you i worry this wont be the last there is no cure for endo why should this be any different? Its there now and i think everytime im cut open its just going to keep on growing on the scars. I suppose in both our cases only time will tell. Can i ask whereabouts you live? X

Penelsk10 years ago

I'm in sunny (for once!) bristol, & you?

Flo10010 years ago

Im in Essex!! Also sunny but cold xx

Flo10010 years ago

Hi this is just a thought if your on facebook you can find me as Jenni Clark. Ive tried to send a msg to you but its either sent about 10 times or not at all!! Lol. Have also tried to change my profile pic on here so its easier for you to find me but no joy xx

Penelsk10 years ago

Hi, I'm quite easy to find, Penelope Ball - obligatory glass of bubbly in hand!

I've had a look for you but not sure which Jenni you are x

Flo10010 years ago

Hi found! And request sent x

Penelsk10 years ago

Gotcha x

Cakey10 years ago

6 months ago I noticed a lump in my groin which swelled and was painful after exercise and at certain times in my cycle. Thankfully I have private insurance and had ct and mri scans after which I was led to believe I had a 2.5cm desmoid tumour in one of my stomach muscles. However after a biopsy last week, I have just found out I have endometriosis!!? Apparently cells must have transferred there 7 years ago when i had a c-section. I have never been aware that I have ever had endometriosis. Not sure what the next step is as by the looks of x-rays etc it take up the whole of my muscle, so not sure how they are going to remove it. Anyone else had this?

Thanks

Flo10010 years ago

Hi Cakey. I had my second lump removed on the 15th Oct it turns out it was large and deep againand also attached the muscle in my hip. It was sucessfully removed and the muscle was repaired. Its amazing what they can do im sure they will find a way to sort this for you x

Penelsk10 years ago

Batman80

Hello,

Sorry to here you're going through this as well.

Op went relatively well when I eventually had it in december - no drama's at the time & they think they have managed to get rid of it all this time, so fingers crossed! Had an infection afterwards which is still causing me problems now, but at least I'm on the mend!

Are you waiting to have a lump removed? x

batman80 in reply to Penelsk10 years ago

HI thanks for the reply I am glad to hear all is well how long do you have to rest for did you have mesh put in ? yes I am waiting for the removal of this lump I do think though that it is stuck to stuff as my bladder hip and bowel are affected each time my period comes , are you still resting was ther restrictions on lifting heavy objects , sorry for all the questions just very curious xx

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brandi880210 years ago

I actually do have this. I have had it for 6 years now and they just recently diagnosed it, but my doctor hasn't suggested surgery he is trying medications first he said surgery is our very last option.

catalyst10 years ago

Hi ladies,

I have recently been diagnosed with an abdominal wall endometrioma too, I was referred to a general surgeon who tried to excise the lump under local anaesthetic (!!!) before realising how extensive it was and that it appeared to be a chocolate cyst, so just took a biopsy instead. It originated a year after my c section.

Anyway, how are you all getting on following surgery? I have been sent from my general surgeon and currently awaiting an appt from my gynaecologist to work out a treatment plan for me. What should I be aware of before I go? What can I do to help myself in the meantime? I am currently juggling pain relief options ( I have paracetamol, ibuprofen, co dydramol, diclofenac and tramadol prescribed for varying degrees of pain) and I find heat pads to the area are useful.

Millymoo3 in reply to catalyst9 years ago

Hi Ladies

I've just found this post in my search for abdominal wall endometriomas. I just had one the size of a grapefruit removed 4 weeks ago. Total abdominal wall repair with mesh to cover the huge hole! Recovery had been slow. But when I went into surgery they thought it was cancer so bonus there!

I was told there was no point in having a hysterectomy as there is no endo in my pelvis. Like you came from my section scar 12 years ago. It's taken a long time to work out what the pain was!

I'm seeing gynae this week for anti hormone injections/implant to stop it growing back. Anyone else had these?

Thanks in advance. Hope this post is still current!

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lemndrp7994 in reply to Millymoo39 years ago

I had the same surgery, endometrioma the size of my foot removed from my abdominal wall and mesh to cover the hole. I had a csection 8 years ago, and this was tricky to diagnose because it wasn't on or near the scar. My doctor put me on lupron for 6 months after surgery because it was so big and the rate of recurrence is so high. The side effects were horrible from the lupron. Mood swings, headaches, weight gain and memory loss, all progressing every month. My surgeon said he had seen the condition before (I live in the US, Northern Virginia) but nothing like what I had. So far, so good, I'm back to exercising regularly (I was extremely fit before this took me out of the gym) but I still have a lot of problems with abdominal work. I can feel the gap where the mesh is so I don't know how this is going to end up in a year or so but I'm hoping to get lucky and not require additional surgery.

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Mom2Klo in reply to lemndrp79946 years ago

I'm in Virginia soon and just found out I have Abdominal Wall a Endometriosis

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EmJo33 in reply to Millymoo35 years ago

Hi, I'm glad you got the lump removed. Just wondered if it had reoccurred or if you are still abdominal endometriosis free?

EJ

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Flo1009 years ago

Hi everyone. I really thought that after my last post on here things would start to Improve for me I couldn't have beenore wrong. I had a total hysterectomy 11 weeks ago including the removal of a large percentage of my c section scar. My ovaries and tubes were stuck to my bowels it turned out to be quite a big op. I only had 4 weeks to come to terms with the idea of a hysterectomy and after deciding to go ahead I thought I would be fine with all the changes and emotions but it's very hard. I stayed in hospital for a week due to complications and the consultant and nurses really kept my spirits up but once home I broke down and felt violated? Weird I know but made sense to me. At only 37 I feel quite alone and lost with this but thankful to have had my children and grateful to be pain free. As I went into surgical menopause I am on oestrogen patches and will be for a long time. I'm sure mentally I will eventually get myhead around all of this and for now feeling positive about a pain free future. To think all of this started with a lump of endo in my section scar xxx

mamaj9 years ago

as of now I am scheduled for colonoscopy the nnth of January my problems were heavy periods for the last few years I have had three previous c sections had sonogram only showed few fibrouds uterus was enlarged to almost second trimesteradhesions and abdominal wall and adhesion bladder surface of the uterus adhesions colon around ligamentsmassive adhesions to section scar took down and more deviations more had to be taken down on both sides the uterus was so large difficult to deliver into the vaginanow have bladder and bowel problems internist said Indo and a dino maybe growing in or around bladder and bowel we'll see

tiffany58399 years ago

Hi! I'm pretty sure I have this also from my 2nd c-section 5 years ago. I started noticing it a year ago and it seems to hurt and get bigger around the time I'm ovulating and when I have my period. I had a ct scan and was told it was just scar tissue from my c-section and they sent me on my way. All of the doctors seems so uneducated about c-section endometriosis and never heard of it. I don't know what I should do to get an answer?! Also my biggest concern is if this can cause infertility? Does anyone know if this can interfere with me getting pregnant again? I am 30 years old and want a baby so bad and I will have to have a c-section again and wondering if they could just remove this when i do that so I don't have to get cut open twice. Any advise is appreciated

Lala19789 years ago

Hi there, I had an operation a year ago to remove two endo lumps on my abdominal wall. It now seems I have another one and am waiting for a scan to confirm. Again this was following a c section nearly 4 years ago. Rather than surgery my consultant has suggested the marina coil - does this not help at all?

Heleo9 years ago

Hi everybody, I also have abdominal wall endometriosis. I had a c-section 4 and a half years ago. I started feeling pain about 2 years ago and could clearly feel a hard bump under my skin next to my navel. I went for an operation to remove 2 endo lumps in 2012. About 2 months after the operation I felt 2 new lumps. The docter suggested that I go on contraceptive injection but I really want to get pregnant. We tried to conceive bur the pain is too much and I'm scared that the endometriosis will spread. I see a fertility specialist tomorrow, hold thumbs he will have good news for me. So nice to be able to share this, thanks.

Heleo9 years ago

I was also wondering if the doctor who did the c-section can be held accountable?

Hidden in reply to Heleo9 years ago

I doubt it, because abdominal or peritoneal wall endometriosis is as common in women who have not had children or c sections, it just happens to be the favourite place for endo to grow, the c section just aggravates it, just as endo surgery can and very usually does for women without children - hence why there are a number of women wanting Total Peritoneal Excision to remove the endo.

I am considering this myself, as I had a hugely massive peritoneal post inclusion cyst following first surgery for endo, and it could happen again. So, it's the shitty nature of endo and where it hides rather than the fault of the surgeon, in my opinion. The main issue really is that endo surgery itself needs to be improved by all surgeons, so they stop pointlessly lasering it off and cut it off at the roots instead to stop it growing back. This is a big op in itself and I could imagine its impossible to check and treat endo in a c section...

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almare in reply to Hidden6 years ago

Most of this users post is not quite accurate, in terms of endometriosis already being in the abdominal wall. If one has a c-section, the endometrium lining from the uterus may be "transplanted" into the abdominal wall. Thus, monthly cycles causing the pain to increase and a mass to get bigger. To hold the physician that performed the c-section may be unlikely. We do not really know we have Iatrogenic Endometriosis until it presents itself. The misdiagnosis from other doctors, possibly. For example, Physicians stating we need a hysterectomy because of endometriosis. Which partly may be true, however, if the reproductive system is fairly healthy. Then you just had a surgery that was not necessary. Leading to life long medication, Hormones... I have turned down many physicians requesting I should get a hysterectomy. Instead of them taking the time to actually locate the problem, treat it appropriately. The physicians that neglect to treat you because they say the pain is all in your head. Those are the doctors you can hold accountable. I wish anyone luck going through this painful ordeal.

Many blessings

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sammi29 years ago

Hello all I have abdominal wall endo. I had a large mass removed about 5 months ago from the top of my abdominal muscle right beneath the fascia. Last month I had a few sharp pains and had a 23 day cycle. Now 12 Days into the next cycle the pain is back. I don't feel a mass yet but I'm worried that it is growing. Has anyone else had a mass in the same location, if so was removal successful? Do you have any tips for me on management? I'm in Canada and it seems that no one here knows about this. My OBGYN said I was her third case ever in her 25+ years and I am the first for my GP who has been my GP for 24 years. It took me 2 years to get the diagnosis with the first mass.

Emilyt1124 in reply to sammi28 years ago

I live in Canada as well and have been diagnosed with abdominal wall muscle endometriomas. The one on my abdominus rectus was 9cm long last time i had a mri. I've been trying to conceive for a year now and see my specialist tomorrow to see what the new plan is since we are still not pregnant. I'm thinking fertility treatment or excision with mesh.

Ideally the plan is to get pregnant again and have a c-section and remove the endometriomas when i have the surgery. I see a specialist this wednesday

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vedablue9 years ago

Hey all. I have just received the same diagnosis. I have an endo mass just below the skin quarter inch above section scar. Will be having excision first of next week. Does it come back? Dr says I have a rare form of endo that is a result of my prior sections. I'm scared but really want relief tired of all the pain 3 weeks of every month

Emilyt11249 years ago

I have this and it is not the same as regular endo. My endometrioma has grown to 9cm and I am now being told to have another child and remove when I get my second c section. What ended up happening with yours? Please share cause I'm worried mine may become malignant

Flo100 in reply to Emilyt11248 years ago

Hi Emily please try not to worry about malignancy I know this is rare but for these lumps to turn malignant is extremely rare xx

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vedablue9 years ago

Hi ladies. I am now 2 weeks post op. Dr hadto do a half c section to remove the mass and all the scar tissue And aa lot of the muscle around it. She said it was difficult to close me up. First few days were fine. At about day 5 I began feeling miserable. It has bled. There are three knots above the incision. If I lay down it feels like my insides are tearing apart. The pain meds make me feel crazy in the head but have resulted to using them the past week. Is there light at the end of the tunnel cause right now I'm seriously questioning if I'm ever going to get better.

Flo100 in reply to vedablue8 years ago

Hi vedablue I wanted to say yes there is light at the end of the tunnel but you really need a lot of time to heal. Both ops to remove my lumps took a good few months to heal(hysterectomy is another story!) I've noticed you posted this a few months back, how are you now? X

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vedablue in reply to Flo1008 years ago

Thanks for the reply. I really believed things were getting we. But they are not. In August I had bleeding for 21 days. September thus far 20 days and counting. I am on continuous birth control which is supposed to stop the bleeding. Also on estrogen to stop the bleeding. Nothing is working. My area around incision grows so much during the bleeding. I feel like I can barely hold my head up because I'm so weak.the iron tablets do help a little but not completely,

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Christy3228 years ago

I have the same problem you do with the endo attached to the abdominal wall. VERY painful!! Nobody understands I think people must think I am full of crap when I tell them about it! I need pain meds just to get a good nights sleep. I have other health issues that are at risk if I get it surgectly removed so it's really not an option I feel your pain.

hanpan778 years ago

Hi

I hope you are still on here. I know you wrote this 2 years ago. I have been in pain for over 5 years and after having laporoscopy after laporoscopy and having now results finally had an ultrasound scan on my caesarian scar in which they found endometriosis had grown within this and my abdominal wall. I have just undergone surgery and had a tennis ball sized lump removed. I just wondered how you are doing now? Has it grown again? I was told it was very rare but not had a lot else said to me.

Hannah

Flo1008 years ago

Hi Hannah sorry it's taken so long for the docs to find your lump. Like you I was told how rare this is but 4 months after the first was removed I had another large lump removed from the other side of my section scar. Then again I returned to my consultant experiencing unbearable pain everywhere so in October last year I had a total hysterectomy and the endo was everywhere it had fused my ovaries to my bowels I also had most of my section scar removed. I've now been pain free for 8 months and I feel like a new person. Hysterectomy is not for everyone but it has been for me. Yes it most definitely can grow again on your scar and anywhere it wants too just keep an eye on things and hopefully if you get another one they'll act on it a lot quicker. Fingers crossed for you xxx

Flo1008 years ago

Hi Hannah sorry it's taken so long for the docs to find your lump. Like you I was told how rare this is but 4 months after the first was removed I had another large lump removed from the other side of my section scar. Then again I returned to my consultant experiencing unbearable pain everywhere so in October last year I had a total hysterectomy and the endo was everywhere it had fused my ovaries to my bowels I also had most of my section scar removed. I've now been pain free for 8 months and I feel like a new person. Hysterectomy is not for everyone but it has been for me. Yes it most definitely can grow again on your scar and anywhere it wants too just keep an eye on things and hopefully if you get another one they'll act on it a lot quicker. Fingers crossed for you xxx

Heleo8 years ago

Hi

I came across a Case Report Study where they treated Intramuscular Wall Endometriosis by ultrasound guided ethanol injections. I'm thinking of suggesting this to my doctor. Have you heard of this?

shasas in reply to Heleo6 years ago

Hi, I currently am waiting for the radiologist to try this on me. I have endometriosis in my abdominal rectus muscle, it is so bad that they would have to remove my entire muscle down to the pubic bone and replace it with Mesh , and I might be in more pain after and would only have mesh as a muscle which would cause more problems . Did you end up having these injections? just curious if it worked. I heard having a hysterectomy won't help since it's in the muscles under my c-section scar. I have no endometriosis on my uterus or ovaries, that is why I don't want those removed if there is nothing wrong with them.

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Legomomma76 in reply to shasas6 years ago

hi. I have endo in my adbominal muscle after my c section too. Just wondering if you had treatment, and if so, which one and how did it go?

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december678 years ago

Doctors ask me how'd I get to be so lucky. They really are at a lost with this one. Acupuncture relieves some of the pain and it's important to keep your weight down.

WiscGirl8 years ago

Hello. I just underwent surgery a little over a week ago to remove an abdominal wall endometrioma.

I have 3 children from 2 C-sections... the last C-section was for my twin girls almost 6 years ago. For the past several years, I have had pain in my right abdominal section. I have gone to doctors and had CT scans and have undergone a hernia repair and a partial hysterectomy since that time. The pain still resided in my right abdomen. It was cyclic and I could feel a mass in my stomach that seemed to harden and become bigger every month (during the time that I would ovulate)...

I just would deal with it. I felt I was going crazy as the pain was awful. I was worried I was dying of cancer. It was just awful.

Three weeks ago, I went to the same surgeon that did my hernia repair several years back. He believed that it was a rare occurrence of abdominal wall endometrioma... just from listening to my symptoms being monthly (like a period) and the mass, etc. Surgery was scheduled less than a week later. It was supposed to be a same-day in and out surgery but the mass was embedded deep into my abdominal muscle and it took more time to remove, reconstruct, and then put mesh on-lay in. I stayed overnight in the hospital for one night. The mass was sent to Pathology and confirmed to be an endometrioma. I go back for my followup post-surgical visit next week.

I just hope this surgery works and I don't get this problem again. It's an awful pain to have.

WiscGirl in reply to WiscGirl8 years ago

Also, my mass was the size of a golf ball.

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Jmcglynn in reply to WiscGirl6 years ago

Not sure if you will get this as this post is two years ol, but I'm having this same surgery in two weeks. I was wondering if you could tell me about the recovery? Timeframe, pain level... really anything you are willing to share. I'm very scared and don't even want to have it done.

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EmJo33 in reply to Jmcglynn5 years ago

Hi Jmcglynn,

I have the same thing as you- for 8 years now. Am looking at having surgery this year. Just wondered how your op went? I hope it went well and you are now pain free x

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Brandi338 years ago

Yes I do it very painful it'd been 13yrs

kelea8 years ago

Hi. I have this abdominal wall cyst. Developed since having a c section in 2011. I had a fourth degree tear in 2009, which is why I had to have a c section with any subsequent childbirths.

It's really painful Moved to qld aust a year ago and finding doctors here can't be arsed with their patients problems. Was told it's not cancer so don't bither doing anything about it... meanwhile its growing both in pain as well as size each month. It's now 2015.. so... pretty frustrating.

Is the procedure to remove it fairly straightforward?

Hidden7 years ago

I was diagnosed with abdominal wall endo in Nov 2015. Removal of mass in Dec 2015. I had 2 c sections prior. The last one in 2010. Removal was fine and was told it was isolated and would not return! 1 month and 4 days after surgery there is another good size lump about 2 finger lengths from prior surgery scar! Was one mass not seen or missed? I had ct scan and ultra sound prior to surgery. This is said to be rare only like 1%! Now I have had it twice? ??

Brittany19896 years ago

I have had 3 c sections and I was having microscopic blood in my urine and the doctor sent me for ct scan which is when they seen a abnormalty growth in my subcutaneous fat tissue on abdominal wall which appearance is suspicious for abdominal wall endometriosis I have had a a round lump on left side of my scar for a long time it is sore and I can't wear any kind of pants that touch it that causes stabbing pain and it gets hot to the touch around the time of my period I have had bad abdominal pain spells here and there and I was put on bc which helped some i go to gyno Thursday will know more by then and I had complained to doctorsee about the spot on my scar all of them said it was just scar tissue so I thank God for that ct scan and a radiologist who knew what it looked like

Brittany19896 years ago

Also I have had lower back pain for a while could this be from this as well has anybody else experienced lower back pain from this?

Snor6 years ago

Hi! I have just been diagnosed with a small endometrioma on the rectus abdomen. Also the radiologist thought there might be scattered endo and possible adhesions on my Rt side of pelvic MRI. I have no history of previous endo. Had an elective c/s 5.5 yrs ago.

Gynaecologist suggested laparoscopic to remove possible endo and adhesions and then open c/s scar to remove the lump. 2nd option was to try Dianogest 2mg for 3 months. This drug is not available in U.K. yet so will need to get it from abroad. I am not keen on hormones as didn't like Mirena coil few yrs back.

My worry is that will my abdominal muscle be destroyed and end up having more problems?? Also the recovery time from surgery?

Legomomma76 in reply to Snor6 years ago

my end is very similar ..... what treatment did you go for in the end and how are doing now? I will get my MRI result on Monday but pretty sure they will recommend hormone approach first .... but I didn't get on well with progesterone only pill and injection when i tried them several years ago.

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Boxermomma2 in reply to Snor4 years ago

Hi are you still active here? I am trying to connect with others in a similar position having had my second mass removed from my abdominal wall and this time included the rectus abdominal muscle which had to be removed. I am still struggling with pain likely neuropathic but also endometriosis cyclical symptoms, i would love to connect and hear how you are doing now if you have the time?

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EmJo335 years ago

Hi,

I know you posted this 5 years ago, I have joined today in search for anyone else with abdominal endometriosis as it is so rare. Mine was caused from a C-section 7 years ago.

Do you have any updates since this post?

EJ

Jmcglynn in reply to EmJo335 years ago

Hi! I've been scouring this thread as well and see the posts are really old. I'm in the same boat as you. Abdominal wall endometrioma, from a c-section I had 11 years ago. I am actually scheduled for surgery a week from today and I'm scared out of my mind. I would love someone to talk to about their experience!

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EmJo33 in reply to Jmcglynn5 years ago

Hiya, it's frustrating there isn't much out there on this isn't it. Especially how advanced things are these days. What type of surgery are you having? Did you choose the surgeon or is it a local one?

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EmJo33 in reply to Jmcglynn5 years ago

Good luck if your surgery is today. I hope it goes well. X

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Boxermomma2 in reply to EmJo334 years ago

Hi are you still active here? I am trying to connect with others in a similar position having had my second mass removed from my abdominal wall and this time included the rectus abdominal muscle which had to be removed. I am still struggling with pain likely neuropathic but also endometriosis cyclical symptoms, i would love to connect and hear how you are doing now if you have the time?

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Boxermomma24 years ago

Are you still on this community? if you are I would love to connect with you and hear how you are doing now? i have had a second mass removed from my abdominal rectus sheath muscle and I am still struggling with pain, as well as ongoing endometriosis cyclical symptoms. Connecting with someone in a similar position would be invaluable for me if you have the time.

EmJo33 in reply to Boxermomma24 years ago

Hi there. I am still active. Really sorry to hear you are struggling with pain x

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Boxermomma2 in reply to EmJo334 years ago

So lovely to hear from you, how are you doing now?

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EmJo33 in reply to Boxermomma24 years ago

Still in constant pain :(. The 6 months the pain is a lot worse and the swelling is awful. I genuinely look pregnant when it flares up. I can just about drive, that’s the most active I can be. Anything else makes it feel like my insides are tearing x

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Boxermomma2 in reply to EmJo334 years ago

I completely empathise, I have had very similar symptoms, its hard to live with isn't it? do you have good support around you from people who understand? I have everything crossed that the surgery can give you the relief of all symptoms that you need.

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EmJo33 in reply to Boxermomma24 years ago

After nearly 2 years I have finally found a surgeon that I am confident with to go ahead and operate on me. Hoping it will be within the next 3 months. X

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Boxermomma2 in reply to EmJo334 years ago

its half the battle finding medics and surgeons you can trust! how have you been managing with your symptoms? looks like I might be slightly ahead of you on the treatment pathway with two surgeries under my belt! Did you have endometriosis just in the abdomen or else where? they found no signs of it anywhere except in the mass they removed from me!

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EmJo33 in reply to Boxermomma24 years ago

The main mass is in my abdomen. There was a tiny pocket on my rectum but consultant said that doesn’t need operating on. I only pain killers when it excruciating. Throughout the day I often periods where it feels like I’m in labour. Mostly I have 2 weeks (2 weeks after my period) where it eases up. Then kicks in again.

Were you pleased with your surgeon? Did he seem to know his stuff? And is yours a result from C section too? X

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Boxermomma2 in reply to EmJo334 years ago

Yes I had my daughter in 2010 by emergency c-section, first mass was found in 2015 but grew and got painful so had it removed in 2016 but we didn't know what it was until results came back, surgeon said she had never removed anything like it! I have this time been under the specialist team at Guys hospital, they did it as a double procedure, professor did lap search whilst specialist surgeon who professor only works with did the excision, i have full faith in them even though the outcome isn't quite going as we all hoped, but I don't want to scare you ahead of your procedure as they have said I am completely unique and they haven't had a patient like me! I want you to have hope and the belief that this can make it all better for you.

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EmJo33 in reply to Boxermomma24 years ago

I was finding when I was phoning around surgeons wanted to treat me as they also said they’d not heard of it before. But I wanted someone that was experienced. I was hoping to do what you did, have a lap to check everywhere else to see if it had spread at the same time, however I decided to pay for a scan at Harley Street so I knew what I was dealing with. The advanced machines they have do the same as a lap but you only need and internal. It was so thorough. Even better the guy that saw me also works for NHS so will get the op now with out having to pay.

Do they know why you are in pain again? Is the pain worse than before? My biggest fear is that the pain will come back.

My daughter was also born in 2010 by emergency C section. She was 14 weeks prem. I feel preg on the coil and the coil ruptured my placenta.

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Boxermomma2 in reply to EmJo334 years ago

I work in the NHS so did thorough research and engineered the referral specifically to guys< i saw the professor privately to help fast track things and then everything else was done under NHS. the lap and excision was done at same time so all in one surgery.

They had to take out the lowest right muscle in my abdominal muscles known as the rectus muscle and take a wide margin to in theory prevent any cells remaining that could re-grow. we knew the surgical recovery would be painful and very limiting, pain management was hard as I have a high opiate tolerance from long term use since first surgery. I was bed bound afterwards and only really started pottering around the house and managing better at the 6-8wk mark. This was clearly surgical recovery and it was complicated by fluid build up that looked like i had a grapefruit protruding from my abdomen! it finally reabsorbed but did set me back a few weeks. I finally started to feel better and they had put the myrenia coil in at same time hoping to control hormones. end of January I started to notice the cyclical symptoms in addition to the constant abdominal pain from surgery, I was hoping I imagined it! Similar to pre surgery and after the local hospital messed up and tried the chemically induced menopause I have cyclical symptoms 2 weekly starts with insomnia, fatigue then increase in pain.. so I only get a few days where I can function on some level each month, I am keeping a detailed record to try and spot patterns and provide teams with information. I am now on microgynon pill in addition to the coil and i am month 3 and there has been a small improvement but I am still getting hit with symptoms and just had a horrendous week. I likely have neuropathic pain from the surgeries and I am having a nerve block to try and help re-set them and deal with this pain and try and get some re-prieve some of the time. But they don't understand how the endometriosis symptoms are continuing with "no cells' left behind and my hormones supposedly controlled, so thats the mystery we are currently trying to solve!

However please try to believe this can work for you, I know they have done the procedure on 4 other patients whose symptoms were relieved after surgery and the surgical recovery. I can understand how scary it is the anticipation of the surgery and fear of if it will work or not, even as I am now I do not regret getting the mass out, I was always growing and doing more damage so this has not made anything worse (except the initial recovery) as such although I am still trying to get back to some things I was able to do before surgery but I think that is because I have lost my momentum of being able to do things despite the pain if that makes sense!

Happy to help, listen to any concerns questions leading into your surgery or afterwards having done this bit!

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