Why does nobody listen?

[Wilmawarrior]

I had my first lap last year after seeing 4 different consultants. They found endo in a lot of places but didn’t remove any... I was put on gnrh analogue decapeptyl injections and referred to an endo specialist at another hospital.

I have a mass in my abdominal wall that they believe is an endometrioma (evidenced by ultrasound scans) but are wanting to do a lap of my pelvis first with cystoscopy and excision before they do an mri and biopsy on the mass.

The mass is the worst part it’s agony and probably there due to my c sections but I overheard the endo specialist say to the student it’s very rare and he’s only ever seen one. I keep going back to the gp for medication and explaining how much pain I’m in with this mass and I think because it’s rare nobody really knows anything about it or what to do and they keep fobbing me off... nobody has told me if it’s malignant or benign , nothing!

I don’t know how much more of the pain I can take and how much fobbing off!!!

Has anyone else been through this or have had an abdominal wall endometrioma or abdominal wall endometriosis.... what happened? What do I do!

Thank you for your time 💛

[Clairey007]

Sorry to hear you're in so much pain and feel that no one is listening to you. I can't help with the abdominal wall questions, but hopefully can help in another way. So, the way I understand it, endometriomas are essentially just blood filled cysts which would suggest to me that they're not malignant/benign, they just are (annoying and frustrating and painful as they are), however I'm not medical professional so not entirely sure on that.

From what you've said, they want to do a biopsy but it hasn't been booked yet? I'm guessing this is for diagnostic purposes, just to confirm that it is endometriosis? If it is endometrioma and they can be malignant/benign, I think they can only tell which of those it is when they have the results of the biopsy back, so if you haven't had it yet they won't be able to tell which it is.

What does surprise me is that they didn't remove anything at the lap you had. I get why they didn't touch the mass on your abdominal wall as they want to confirm what it is first and put a plan in place to remove it safely, but I'd have thought they'd have excised any endo that they found to try and help you a bit. But again, as I'm not medical, I don't know, there is likely to be a good reason they didn't though. I know that's not much of a comfort to you at the moment, but they won't want to do anything that could cause you more problems than you already have. If they're booking you in for more tests, have they sent you any confirmations? If not, have you thought about giving the hospital a call and speaking to someone there, maybe a specialist nurse if you have one? Or seeing if you can get an appt with your consultant? It is your body and health, and you have a right to know what's going on with your treatment. I'd definitely push it with the hospital, whether you call them directly or go via your GP is up to you, but you need some answers. You could even try your PALS service if you have one in your area, they might be able to help too.

Hope you get some answers soon. Don't forget though, we are all here to support you, you're very definitely not alone.

Xxxxx

[Simo7]

Hi Wilmawarrior, I can feel your frustration but can only think that you need to contact your specialist again. Call or Email his secretary with your questions about malignancy etc. I think that they get so caught up in the physical side that they sometimes forget that there's a woman with emotions attached! I think that they usually do the MRI before the lap and then take a biopsy while doing the laparoscopy?

If the Hormones aren't helping then insist that your GP gives you something for the pain. Half of the battle with this disease is needing to demand what you need due to others lack of knowledge. While youre contacting the surgeon explain that your GP isn't helping with pain relief and ask if the secretary could pop an email to your GP with painkiller suggestions. Hopefully your surgery date will come around quickly. Sorry can't add any insight to the abdominal wall endo', my last op I had my ovary embedded in my wall but not sure if that was endo sticking it or adhesions. Wish you well.

[GrittyReads]

Don't worry about the excision not being done at the earlier laps. It is routine for initial / diagnostic laps to only search for and identify the existence of endo. They may remove very easy endo tissue, but if the endo is in difficult-to-access, or sensitive places - eg on the bowel - then more ordinary Gynaes are supposed to leave this more difficult stuff to Endo Specialists. In the UK these Endo experts usually only work in BSGE Centres - 'Endo Specific Centres' - where the best Endo Gynaes know much more than regular gynaes. It may be frustrating, but it is better that they are reticent and didn't attempt to remove tissue that may be beyond their expertise. A lot of women on this site have suffered as a result of partial removals

However, I do agree with checking some of this out, via contacting your consultant's secretary; also about pursuing when exactly the biopsy will happen. I would also get your GP to pursue this, and make sure that you have seen all notes and records.

Hope this helps.

Take care,

Gritty

[MrsWalshy]

I too have endo of the abdominal wall. I had a small endometrioma removed at the edge of my c-section scar, but it was done by a general gynae and not fully removed. They just take a biopsy to confirm that it is endometriosis as opposed to fatty deposits etc.

I requested a re-referral to a specialist centre, who have given me a new MRI and found loads more than the original consultant. Endo / cysts / thinning of the myometrium / lots of adhesions (my bladder is stuck to my uterus). I am just awaiting a date for lap with excision now.

I know it seems to take forever, and it hurts so much, but you just have to keep on at them. Request a re-referral to a BSGE centre if you aren't under one at the moment, they have much more experience and skilled surgeons.

Sorry if this is a bit rambly- I too am having a flare up at the mo and neither my brain or body are working properly.

I hope you get sorted sooner rather than later!

[EmJo33]

Hi, in July I would of had abdominal wall endo for ten years. It has taken a long time to get answers as it’s not a common condition. I have done years of research and am now in the process of getting it removed. If you need any help with this please message me. X