Endo in abdominal wall?

[maz1209]

Hi everyone! Hoping someone can help me with this, I am at my wits end After my youngest son was born 3 years ago by c section, (I am 33 now) I have had a lump just to the side of my scar which used to become very sore when I had my period. My periods, which have always been heavy, became increasingly so, with me suffering from large clots, prolonged bleeding and such heavy flow that I sometimes couldn't leave the house without extra trousers, pants etc (this was on top of my "double protection" I have been back and forth to the docs over this time, on many many occasions, but have been told it was anything from ibs, to possible coeliac disease and all things in between. There was a stage where intercourse really hurt and I would bleed really heavily. Worried, i kept going back to my doc who finally referred me to see the gynae. The intercourse related problems had calmed down by the time I had my appointment, but the consultant said he would like to carry out a laparoscopy to check for endo. Of course, the first thing i did when i got home, was to jump online (good old google eh?!) and i was convinced i had found the answer! by this time, the lump had started to become sore in between my periods too. fast forward a few months (and about 5 cancelled lap appts by the hosp!) i finally had it done, and woke to the consultant telling me that no endo was found. I was so confused, and almost disappointed that i was back to square one of not knowing what was wrong with me! I was told to take femodene contraceptive pill back to back to alleviate the heavy periods (I have had strange black, clotty break throughs a few times while taking this) Anyway, the lump was getting increasingly painful and i went back to my doc who referred me to for an ultrasound where a small mass was discovered although they could not tell me what it was. I was then referred on to general surgery, where after they lost my appt referral, i finally seen a consultant who told me that she thought i had an incisional hernia, i asked about the possibility of endo again but was told no, it def seemed like a hernia. By this time, I was in so much pain, i had to visit A&E as i thought something was killing me from the inside, i was sent home with tramadol etc. I then had to wait for an mri scan, with the results coming back the other day that I have endometriosis in my abdominal wall!!!! The report also said that they would offer medication before surgery. I have bad flare ups, sometimes the lump is a bearable dull ache and other times it is simply excruciating. I have barely left the house in a fortnight, I keep a heat pack down my trousers 24/7 as it seems to help, i am popping pills like smarties and i dont think i have ever cried so much in my entire life!!! Has anyone had a similar experience? im waiting for my follow up appointment back at gynaecology, but im stressing myself silly in the meantime!!!

Thanks for reading this verrrrrrrrryyyyy long post and look forward to your replies

Mx

[Lizziecotterill]

I'm glad you've managed to write it all out, sometimes that helps!

I'm

Sorry you've have had such a shitty ine of it, proving yet again drs take no notice of what we think!

Here's a big hug, bless you - you must be in agony too as well as your babies.

Goodluck & keep on saying it if you had the strength; to be honest I gave up ages ago.

Xxxx

[Petunias]

Hiya. You need to see a specialist rather than a bog standard gyne.. look up the bsge.org.uk website andcsearch for the accredited endo centres and ask your GP to refer you to your one of choice - might be worth researching a few to see if they have experience of abdominal endo. There have been a few ladies with abdominal endo on here too - if you search this web site for it you'll find some old threads that may help - I really feel for you, I had it in my abdominal wall but it was a very small area. Good luck xx

[mrs-I]

Hello I have abdominal wall endo too after a c section in 2000. Had similar problems with diagnosis and a reluctance to treat it . I I did have it removed in 2009 but it has grown back . I remain in disbaling pain . I think if you can find an endo centre with specialist advice that would be the best . I'm so sorry I can't help further as I am still struggling to get help too . Good luck x

[EmJo33 in reply to mrs-I]

Hiya, I have the same condition as you. Not had it removed yet. How are you getting on now?

[mrs-I in reply to EmJo33]

I not to have further surgery and the have made the choice to live with the constant pain . I know it's not a positive message to hear but there hasn't been a satisfactory outcome for me . X

[mrs-I in reply to mrs-I]

It's in the c section scar . Several masses and bruises between day 14 and 21 of my cycle . It changes shape and size all the time . It's like a monster

[EmJo33 in reply to mrs-I]

I'm so sorry to hear this

I have had mine for 7 years now- the pain is becoming increasingly unbearable. What worries me is the few people I have found which have had surgery have all said it's come back! Can I ask what surgery you had? Is your pain worse than when you had it the first time round? X

[mrs-I in reply to EmJo33]

The pain quite full on for most of the time and Only had about 6 months after the surgery pain free . I had lump removed . One of my issues was it was diagnosed by a general surgeon who referred me to gynaecology who refused to believe it wasn't a hernia . I was unsupported and don't believe I received the best care . I have since had the hormonal therapies prostrap and zoladex but no long term solution . I can only advise you find a specialist gynaecologist and develop a plan . I understand for my self that only extensive resection of my abdominal wall would offer any long term benefit. I had my daughter in 2000 . So although I was diagnosed with endo in 1996 I have had this particular problem for 17 years xx

[EmJo33 in reply to mrs-I]

Did they remove it by opening up you C-section scar? I can't believe you have been suffering for 17years. I wish there was more help out there and more specialists with the knowledge and the experience of Abdominal Wall Endo. I've spoken with many and they either haven't heard of it or have only treated a handful of people-it's scary! What area are you from? X

[mrs-I in reply to EmJo33]

They made another incision above my c section scar . I've spoken to a few surgeons who haven't treated it before. I had an internal bleed after the operation which nearly killed me and has put me off searching further for help . I wish I could offer you some help or advice but I'm not sure which direction to point you in . I live in Kidderminster in Worcestershire but have been received treatment in Birmingham and Dudley. Have you asked your gynaecology team if they can recommend anyone?

[EmJo33 in reply to mrs-I]

I have recently found a surgeon in London but it's private. I haven't really got the money but I'm getting desperate. He is the only surgeon I've spoke to so far that has experience in this. Still petrified it will come back. He is also the only that suggest cutting above/below the c-section- all the endo centres said they would treat me through a lap which I now know is wrong as that's not where the endo is.

You have had some terrifying experiences. I don't blame you for being put off. I fell preg on the coil, the coil ruptured my placenta when I was 6months preg. She was born 3months prem. All fine now, but like you it's so frustrating being left with this endo. Just want a normal life again

[mrs-I in reply to EmJo33]

I'm so sorry . It sounds like you ve had a really difficult time . I hope u can find some answers and are able to decide on a way forward . I was very desperate when I had surgery and I really wish I had been more confident about the outcome . Don't rush in . Take another opinion if you can . The worst outcome is to go through lots of treatment with no improvement . Please let me know how you get on . Good luck xx

[EmJo33 in reply to mrs-I]

Yes I will keep you posted. Thank you for sharing your story with me x

[Hidden]

Hi there, I am sorry for your pain. I also have this problem after a C section. I am currently using bioidentical hormones (progesterone) and starting to see some improvements, I also practice Sophrology and will be trying Reiki soon. I thoroughly recommend Sara Gottfried MD she is a Harvard Gyni and been through who own issues and we have to work at it a bit and it takes time, but I believe it to be helpful. youtu.be/-ZnS5_WWt-A(Not working as expected?) I hope this link will help give you some hope and you will be comfortable very soon.

Big healing hugs xx

[Yazza]

Where do you live?

Unfortunately that is path of the course for this horrid disease I have 2 lumps which I believe is endo and have just deferred surgery for an MRI as my current consultant doesn't listen and I'm asking for a referal to a endo centre. X

[songbird27]

Hello maz1209 , Let me start with I don't check my email often and I have not been on this site in almost a year. I had to check my email and saw your post . I was meant to meet you . Let me start with endo is the most painful thing . I have 2 children and both c-sectioned. I have been battling endo for 9 years now probe longer. The pain is crippling and I am sincerely sorry you are going through it. First of all my name is Julie and I am from the United States , my husband is from England . I am always comparing Medical research . You just through me for a loop. You said they did an MRI and found endo inside the abdominal wall ? That would explain why the Dr did not see it when she went in . Over here in the States they tell you the only way to find it is through a laparoscopy surgery. I am 41 and had my first one at 31 . I would have crippling pain , blood filled cyst on my ovaries , periods so bad that I passed huge clots. I have had a total of 8 laparoscopies . The more they go in , the more scare tissue and that is just as painful love . In 2009 I was given a partial hysterectomy . They took my uterus and cervix and ablated al the endometriosis they found. After that 2010 another laparoscopy stage 4 endo. I was fed up and went for a 2nd option. He went in and ablated the endo. My husband and I did not like him , besides the no bedside manners , he did not answer anything , so back to her I went. In 2012 3 months before my Holiday to England , I was doubled over , I was in so much pain I could not walk , I had to call an EMT . I had a massive chocolate cyst on my left ovary and a week later my left ovary and tube was gone . I was left with 1 ovary . I was trying my hardest to hold on to it for hormones. I did not want to go through full blown menopause at 40. I was thinking of my bones . No estrogen and my bones would be so brittle by the time I was 55 . Plus I thought what are the chances of growing endo with 1 ovary . I grew stage 4 and she said if she had to go back in she was going to take the ovary or put me on a drug called Fermara . It blocks all estrogen . I read up on the drug and after going through the shots that were similar I said go ahead and remove it. A week went by and it felt like she did nothing . I went in to talk to her and she said I could have some behind the colon and sent me to a colon sergeant. After he ran test , they showed beginning stages of pelvic floor prolapse , rectal prolapse and a med rectocele. They don't do anything till it falls out . I had to go see him today and my husband went with . I told him it is endo without a doubt. Yes you can still grow endo with no ovaries and my obgyn did tell me since I was a rare case don't be surprised if I grow it . He was going over how the surgery would be . He said it is not a keyhole surgery , it is open surgery and a lot of complications can happen. That is where I am with it. And painful intercourse is back . I wish I did things different . All the studies I see out now and how the FDA is saying the hysterectomies are no good and cause problems . Your youngest is 3 and you had him c sectioned , I have read that you can get it inside your scar. Did your MRI show how much ? When you say abdomen wall (inside ) do u mean between the muscle and skin ? Did they use iv dye with your MRI ? I'm floored , speechless .... I know it doent look speechless with the book I wrote , but if that is the case then England's Medicine and your post just might have saved me from a major surgery and the possibility of a colposcopy bag for life. When you are in a major flare up off your period does your stomach distend out where you look like you are pregnant ? Please , Please stay in touch. You gave me some hope and I hope my story gave you knowledge of what you are up against. If you go to the University of Michigan web site there is a lot of info there. They specialize in Endometriosis . You have a wonderful day , your in my thoughts and prayers xxx

[maz1209]

Thanks to everyone for taking the time to reply to me, its very much appreciated I live in Scotland btw!

Can I ask, with regards to the endo centres (I checked, and there is one a couple of hours drive away) would it be my own gp that would have to refer me to the centre or is that done through the gnae at hospital? Apart from the pain, the overwhelming tiredness etc, the one other thing that causes me to worry is the strange bleeding! even on back to back bc pills, there is some sort of bleeding/clots every other week, but I just feel as if the doctors aren't listening to me! Its so reassuring to read all you own personal stories, to know that others are experiencing similar difficulties and its not that I am not going mad!!! Songbird27 you have been through the wars! you poor soul, it really sounds like you have had a terrible time of it Im not sure exactly where it is, as they still haven't sent me the report! was supposed to be sent to me a week and a half ago... I am seriously starting to lose any confidence in them! all I was told on the phone is that it was in the abdominal wall and that is what was causing me to be uncomfortable???????? wish it was just discomfort I was feeling, I could live with that! and that I was being discharged from the general surgery department and BACK to gynaecology but I am still to hear when that will be likely to be

Mx

[mrs-I]

I live near birmingham and have seen 3 gynys - and none had seen abdominal wall endo before . The surgery and drugs haven't helped me at all . My mass is visible and palpable and bruises when its bleeding . My advise would be find the most experienced gyny as close to where you live . As u could go 200 miles and still not find any answers . In the end I was offered councilling to try and come to terms with the pain !!! Please let us know how you get on xx

[Lala1978]

Hi Maz1209, I was just wondering whether you had got anywhere with this? I had two endo lumps removed from my abdominal wall in 2013. By the end of 2013 I was experiencing severe pain again in the same area so went back for another scan. A new lump had appeared but have been controlling it until now with the mini pill (apparently if you can stop your monthly bleeding less chance of it getting bigger and causing pain). However this is not working anymore and I have been in constant pain for the last 10 days in my lower right abdomen which also travels up and have constant pain in my hip. I am lucky enough to have private healthcare through my employer so will be getting the scan through next week hopefully. When I had my surgery to remove the lumps in 2013 they also did a laparoscopy which showed minimal endo on the inside which they removed. There isn't an awful lot on the internet to research but in every case it recommends wide local excision to remove the lumps and apparently rare that it reoccurs (guess I've just been unlucky in that sense). It's so frustrating that this could have easily been avoided if the surgeons had washed stomach with saline solution before closing up after C section. Let me know how you are getting on? x

[maz1209 in reply to Lala1978]

Hi lala1978! I'm so sorryi haven't replied sooner, I just seen this msg when I reset my log in details! How have u been getting on? My surgery is next week for the removal of the lump but I have no idea what's going to happen as there's next to no info online!!!!xx

[Oamanda6 in reply to maz1209]

Maz who is your surgeon. I'm having surgery also next week. Scottish too x

[maz1209 in reply to Oamanda6]

Hi omanada6 😃 this time it's under dr Ali at the victoria. U?xx

[Oamanda6 in reply to maz1209]

I'm with Dr Hawthorn at the Southern next Wed x

[Lala1978]

Hi Maz, things got worse for me unfortunately and ended up in A&E early one morning. Suspected kidney stones, ovarian cysts etc. (the usual when the doctor doesn't understand what abdominal wall endo is!). Had an internal pelvic scan which showed nothing and then got my private ultrasound through. My lump had grown to 5 cm in diameter and it was pressing on muscle hence the awful pain in my hip (referred pain). I was quickly booked in for an operation and it was removed at the end of January. Operation was worse than expected as lump was embedded in the muscle so agony afterwards but 3 months later I feel better than I have in ages! I am still taking the progesterone only pill to keep anything at bay (I'm hoping I would be really unlucky for it to come back a third time). So fingers crossed, that's it for me. Good luck with your operation and don't be too put off by my case, it's really rare for it to come back but you'll know the symptoms immediately. Unfortunately there isn't much on the internet because it isn't a common thing. Endo is common but not abdominal wall endo. I would imagine as you have already had a lap they will probably not repeat this procedure. You will have an excision (probably through your existing scar) to remove the lump. You will be sore but as long as they don't need to cut through muscle you should recover pretty quickly. Keep yourself dosed up on painkillers and take it easy and you will be fine!

[maz1209 in reply to Lala1978]

Oh god that sounds awful... I too ended up in A&E a couple of months ago because the pain was so crippling but I was just given more meds. Kinda feel that they think it's all in ur head and ur going a bit loopy!!!! I seem to have flare ups re pain intensity... It's always there, a dull ache, with some days being worse than others but every couple of months or so it just magnifies and it's agony. Been on the pill back to back for 8 months now but hasn't made a difference xx

[Lala1978]

The surgery should make all the difference, carry on taking the pill after surgery as well as this will hopefully ward off anything regrowing. I keep thinking about stopping the pill as that has other side effects but too scared in case it comes back again!

[Lulububs]

I know endo is horrid and there not much we can do but pain meds or contraception but i can tell u what did work for me tranexamic acid, i got terrible periods i would not leave house for 3 days due to flooding, fainting, so heavy i couldnt move and the clots were like giving birth. I have been given these tablets which u take on day u see first bit of blood and they stop all the heaviness and the clotting, i can literally live a normal life on my periods now, i still have to take a few painkillers but not half as bad as was and it has halved my tampon and sanitary towel bills ha ha.

I take them for first three days and job done they are a absolute blessing for me.

[EmJo33]

Hi Max, I have the exact same thing as you. I know you posted 4 years ago but wondered how you were doing with this now. Have you had the lump removed?

Xx

[Stresshead24 in reply to EmJo33]

Hi I've just been told the large lump near to my belly button could be abdominal wall endo. I had stage 4 endo removed 15 months ago. I cant have any form of hormone.. any advice to offer? Thanks xx

[Stresshead24]

Hi I've just been told the large lump near to my belly button could be abdominal wall endo. I had stage 4 endo removed 15 months ago. I cant have any form of hormone.. any advice to offer? Thanks xx