Endometriosis in the abdominal wall

[Worzel]

I wonder if anyone else has experienced this? I had a Merina coil fitted 5 years ago and have been having light but painful periods ever since, these seem to be getting more painful with each month that passes. Last October I found a lump in my abdomen on the right hand side which appeared to be getting larger. I went to my GP who said that they would send me for an ultra sound scan, after not hearing anything for over a month I phoned my GP to chase this up and it turned out that my GP had forgotten to refer me! My lump appeared to be much larger and I was becoming increasingly worried so asked to be referred privately. I then saw a general surgeon (as they thought that it might be a hernia), had a CT scan and then an MRI scan. This picked up two lumps (One being the one I had noticed), they thought that it might be a Sarcoma or a Haemotoma so I had an ultrasound guided biopsy. I had a very worrying Christmas (and a broke one after all that expense!!) and received the good news a couple of days after Christmas that it wasn't malignant but that it was endometriosis. I had an operation 6 weeks ago (laparotomy) to remove this and am waiting for my follow up appointment at the beginning of May. However over the past 3 weeks I have been in agonising pain, I've been back to the GP several times and they are going to refer me to a Gynocologist as my GP thinks that I may have had endo for quite some time and it wasn't until all the pieces were put together that I realise that this may be the case. (Sometimes have pain after intercourse, pain on and off over the month but worse the week before and during my period, sometimes breakthrough bleeding throughout the month, however have light periods - although this could be down to the Mirena Coil).

I am experiencing severe lower back pain, pains in my stomach, in my hip and down my thighs. I did have these symptoms before my operation but put them down to the lump that I was having removed. My GP thinks that I may have more endo deeper down (However as previously mentioned I have had CT, MRI and Ultrasound (I know that the CT picked up another lump which they weren't too concerned about at the time as I wasn't complaining of pain in that area). However would endo show up on these types of scans if it hadn't formed into a lump? My operation seems to have exacerbated all of my symptoms as i've never been in this much pain. Towards the end of the day my stomach seems so bloated and I can hardly walk due to the pain in my legs.

The GP examined me and explained that my operation wound has healed and the pain isn't associated with this, he had prescribed co codomol but these didn't work so I am now on Naproxin and Tramadol which are still not touching the pain at times, although have helped me sleep through the night.

I would be really grateful if anyone has experienced the same as me? Have you had abdominal wall endometriosis and then found other endometriosis too? Also can endometriosis (not formed in a lump) show on scans?

Thank you

x

[Cloudyrain]

I haven't had the same as you, other than that my endo was all over. Howeve, to answer your other question, most of the time endo will only show up during surgery. I had loads of it everywhere but nothing showing on any scans. Sometimes on rare occasions it does show, and endo cysts can be seen in scans, but this is one of the main problems with diagnosing endo.

The weird thing with endo is that you can have one tiny little bit of it in one location and it can cause loads of pain, or you can have it everywhere and have no pain. The volume and location isn't always related to the symptoms.

I would have though when they did the lap they would have had a good look around for more endo, but maybe that's sonething you will find out at your follow up. Also, I know your Dr said that at 6 weeks pain won't be related, but I had post-op pain for a few months as things inside take longer to heal than on the outside.

My main pain is my hips and thighs and i find that heat bags are better than anything at reducing pain.

I'm sure someone will be along who knows more about this specific endo than me.

Good luck x

[Worzel]

Thanks ever so much for your response, I really appreciate you taking the time to do so. I'll give the heat bags a try as well. I didn't have a laparoscopy so they wouldn't have looked for more endo. Because it was in my abdominal wall they basically made an open incision and took out the lump and surrounding area but didn't actually look in the abdominal cavity as they didn't go through the muscle just shaved some away to get rid of the lump. Thanks again, just reading everyone's posts and having someone take time to listen is support in itself.

X

[Worzel]

Sorry Cloudyrain - I forgot to say sorry to hear you had it all over, I hope that you aren't in too much pain and they managed to give you some respite!

Take care

X

[lillyflower]

Hi you have just described how my symptoms began! I've never had long periods just a couple of heavy days but lots of bleeding in between but only small amounts that's why I initially told my doctor this is not normal! Anyway I now have constant pain and the hip thigh pain has been a lot worse since my lap which is really frustrating. I have endo and lessions and blocked tubed so I'm not sure what is causing all the pain or both! Nothing showed on any scans until my lap a couple of weeks ago. I'm not sure what will happen next as I've got to wait till May for the follow up appointment so until then I try to use paracetamol and ibruprofen at work and codeine if I'm desperate but heat is always the best snuggles up on sofa with my hottie is a big relief!

So I don't want to scare you maybe there's a little endo else where or scar tissue that's causing more pain but they can only tel you by doing a lap. As cloudyrain says post op pain can last longer as I'm finding out now! I would definitely be asking at your follow up if they plan to look further by doing a lap. Good luck and hope you find some good pain relief I'm suffering today with a cold too so seems to have knocked me sideways! Well things can only get better from here! Xx

[Worzel]

Hi Lilyflower,

Thanks ever so much for your reply, it's so helpful knowing you're not alone as sometimes I feel as if i'm going mad! Sorry to hear you too are in so much pain, I hope that it improves soon for you and your cold doesn't last too long! That can't help when you are trying to heal if you're sneezing all of the time!

I will ask at my appointment about a lap as I have never experienced pain like this before and know that something isn't right. It was easier to get something done last time as I had a lump which they could feel, I sometimes think that people don't believe you unless they can see something and put it down to 'women's problems'!!

Good luck and take care

x