Endo excision

[vedablue]

So my Dr says the pain I'm in is BC of 3 cm endo mass just below the skin. I'm having surgery this week. Scared!!! I've had 3 cesarean sections and have an abundance of scar tissue. She says I have a rare form of endo. Anyone else have this and how have you coped. TIA!

[Impatient]

I haven't had it - but lots of ladies on the forum have ended up with scar tissue endo which has to be removed either from C-section scars or laparotomy scars or even in some cases laparoscopy scars.

It doesn't necessarily mean you have endometriosis anywhere else. which is good news...great news infact.

Basically it is an accidental transfer of some of the uterus lining cells which get trapped stuck in the skin wound and because they still think they are in your womb - they react the same way - every time your hormones send signals to the womb to grow a lining - the same message gets to the misplaced cells stuck in the wound or scar. so they grow a lining, then when you don't get pregnant along comes more hormones telling the womb to shed the lining ...and same thing with the endo cells in the scar, and then the lining sheds off leaving a little wound and it bleeds and continues to bleed until your blood clotting factors get to work to stem the flow - just as it does with your period only with the period bleeding it has an escape route, but in a C-section or surgical scar there is no escape and a blood blister forms.

and get get quite big as more months go by. and each time the endo lining is shed it contains more endo cells and they can nest near by and next month they can behave like the other endo cells and so the problem spreads locally - and it could just be from one endo cell that happened to get stuck on the baby or any piece of surgical equipment and then brushed against the skin transferring to the wound, which then got trapped there when the wound closed up.

It is a rarer form of endometriosis -because the route of it getting there is known. and it also means that in most cases with surgery it can entirely be removed and not cause any subsequent problems other than leaving you with a scar to heal up.

In that respect it is a bit different to natural endometriosis which travels via different methods - often back flow bleeding along the fallopian tubes. It should be called artificial endometriosis I suppose -because it gets in place by human intervention. It is called "implantation endometriosis," or cutaneous (skin) endo or subcutaneous endo (under the skin) but all endo is implantation regadless of how it gets to where it shouldn't be and implants and starts behaving like a womb does.

I know the medical literature describes this as rare - but actually it isn't that rare. Endo is so common naturally - at over 10% of all females anyway, so compared to that it is a rare type of endo from the sort normally found to be causing trouble but there are quite a number of cases of this type of endo on this fourm alone. Not all from C-sections but from other gynae surgery wounds. The belly button hole in a laparoscopy op seems to be a common site as well.

It is not as invasive surgery as the sort needed to get at endo behind the uterus for example, it is a skin one or just below the skin -so the hole to remove it will be another scar like the C-section one and the recovery just the same but without the joys of having a new baby to take your mind off it.

Same recovery process applies - no heavy lifting, plenty of light and regular walking exercise and plenty of rest, if you over do it and it hurts then stop over doing it and give yourself recovery time.

[vedablue]

Thank you for the explanation. She will be making a 3 inch cut to remove. She will also change the BC to he'lp too. The pain meds don't help me at all. I think I'm immune to them now. I dread surgery though I know it could be more invasive. I also have PCOS and struggle with cysts. To me its a double whammy. Thanks again

[Lilykat197]

Hi Tia,

I had exactly the same thing, following a c section back in 1994 to deliver my only son (was never able to get pregnant again), I developed 5cm mass on the right side of my abdominal wall, it took the doctors years to diagnose me and I eventually had an excision back in 2008, at the time the doctors were positive that due to the type of endo I had I should have no further isuues.

Fast forward to 2012, I started experiencing severe abdominal pain, pelvic pain, constant bloating sore back and extreme fatigue, I went back to my GP countless time with no results, no one thought of endo because of the type I had, however a couple of months ago I developed a 3cm mass on my left side which really started the ball rolling.

I was admitted for surgery on 7/4 where they cut out the mass, turned out it was another endo mass unfortunatley they also found extensive endo on my bowels right ovary and abdominal cavity.

Unlucky for me I now have both forms of endo but from what I understand that doesn't happen too often.

Please try not to worry the relief I had after my first surgery was unreal it was the best thing I ever did and had no pain for 4 years, hopefully you will never develop endo again and that will be the end to it.

Good luck with it all xxxxx

[vedablue]

Thank you for your response. Everyone thinks I'm crazy with my explanation of pain. But its horrible. Almost everyday. The bleeding seems non stop. If I stand up I feel like its gushing out all the time. I hate this its ruining my life

[Lilykat197]

You are certainly not crazy!!! Unfortunately endo pain can get us all down, I am pleased for you that your surgery is this week hopefully it will bring an end to your pain.

Keep smiling xxxxx

[tiffany5839]

I have this incisional endo under my C-section scar also and it's fused to my rectus abdominal muscle. I have not gotten it removed yet because I have been trying to get pregnant first so they can just remove it during my repeat C-section so I don't have to get cut open twice. Problem is I can't seem to get pregnant!! Does this kind of endo cause infertility??

I have a bad feeling that I also may have the endo everywhere else now too because my periods have begun to be very painful the last few months along with horrendous back pain. I am scheduled to get an HSG dye test done to see if my fallopian tubes are blocked. I got pregnant the first month trying with my kids and now I can't at all!

Lillykat did you find out why you couldn't get pregnant again?

[Lilykat197]

Hi Tiffany,

To be honest I can't say for sure why I could never get pregnant again, at the time I was not yet diagnosed with endo so there is no way of knowing for sure even though I suspect that the endo was always present and once I had my son got even worse.

I must say I was devestated at the time, I always wanted a big family and I never wanted my son to be an only child but these days I count my blessing and am so greatful I was able to get pregnant with my son, I reckon if I left it any longer it would have been a very different ending xx

[Lilykat197]

Meant to add the NHS back when I was trying to get pregnant again (my son just turned 20) didn't really do much to help seeing I already had a child so I was never sent for any tests I was just told to keep trying