Worse endometriosis or nerve damage?

[Melon365]

Is there a way to tell if my worsening symptoms are from endo or from nerve damage?

[Cailleach]

Are you being told it is nerve pain? I’m hardly a medical expert but if it gets better when you take meds for nerve pain, such as amitryptyline or Gabapentin, but there are many others, then then seems to indicate nerve pain.

Another way of telling if your endo is getting worse would be having further investigations such as Ultrasound or MRI with someone skilled in detecting endo, or a laparoscopy.

Reviewing your symptoms with someone expert in endo should help as well.

I am just wondering if you are being told this because you have had treatment for endo/ surgery and it has returned. It can return but not all doctors are willing to accept that.

[Melon365 in reply to Cailleach]

Hi Cailleach

Basically I can't get anyone private or NHS to give me a second laparoscopy. They are telling me that I have Superficial Peritoneal Endo (stage 1) and that surgery might not help. They said that if it is your nerves that are the problem so treating the endo wouldn't actually help. But my symptoms are significantly worse than before and the first surgery was done by someone who wasnt a specialist in endo.

I had a specialist ultrasound in December last year and they couldn't see anything but I had just stopped having GNRH injections so could that have made a difference?

It is just that in the last 4 months I have been bleeding very irratically, the cramping is so painful I can barely walk and everytime I ovulate or bleed my left ovary swells to the point where you can see it.

Would nerve damage cause swelling, bleeding and vaginal discharge?

I wanted another lap to know for sure if it is superficial endo because it certainly doesn't feel like it and I don't trust the first surgery.

No one has specifically told me it is nerve pain but that is what they think and I don't know how to find out if it is or not.

[Cailleach in reply to Melon365]

I don’t know enough to say if the GNRH would make a difference to your scan, but it seems your symptoms are significantly worse now than they were when you had the scan so it seems wrong to rely on that.

Are you getting effective pain relief from your GP? If they are saying it is nerve pain then ask for meds for that as well as standard pain relief.

It seems to me you are going to need to push for another referral or pay for one, There is a Facebook group where recommendations for gynaecologists are allowed ( not allowed here). You might also find helpful advice there.

The group is Endometriosis Guidance and Infrmation Resource UK.

Good luck !

[Melon365 in reply to Cailleach]

Yeah I was trying to pay for another laparoscopy and that is when they said it is likely nerve problems. Being told pain management is my only option now.

My GP is useless and I use CBD oil to manage my symptoms.

Thank you for your help x