Is there any light at the end of the tunnel?

[Lil90]

Hi I was diagnosed with endometriosis via a laparoscopy back in 2012. Since then have tried all sorts, I currently have the coil which was working well until about 6 months ago. The amount of pain I am now in is unbearable, it is constant and is effecting my appetite. I am in the circle of GP and tests, all of which are coming back clear although my latest scan revealed pockets of fluid but apparently this is not concerning 😟 I am not really sure what it means, does anyone have any experience with this? I was sent to A+E today by GP as they were concerned I had appendicitis, obviously I do not, and after a tedious wait in A+E they said my stomach is really tender and just prescribed more pain killers. Last gynaecologist I saw was rubbish and said a lot of people suffer with endometriosis, which whilst I appreciate that, it doesn't help when you are in constant pain. Just wondering if anyone has had more than one laparoscopy done? If so how did you manage it? Slightly at the end of what I can physically and mentally take so hoping someone will be able to show me there is light at the end of the tunnel.

[Tangoandmax]

Hello, was the last scan an MRI? They can’t just acknowledge it’s a painful condition and expect you to carry on suffering daily, it’s their job to help eradicate (where possible) or ease symptoms. Honestly the attitude of some medical professionals re. Endo is appalling.

I’d make a complaint to PALS and request an alternate gynaecologist/GP, finding one that listens/helps has been like finding a needle in a haystack for me. If ever you don’t have a clear plan for hormone treatment, pain management or surgery to treat they are not doing their job and leaving you to suffer. The only way they listen/take action in my experiences is writing to PALS. X

[Lil90 in reply to Tangoandmax]

Haven't had an MRI, they just did ultrasound and all it showed was pockets of fluid. Honestly it's the needle in the haystack which is tiring. I have just found out that there is a specialist endometriosis clinic at the Liverpool woman's hospital so don't know whether to ask to be referred. I am at a loss

[Tangoandmax in reply to Lil90]

For context I had eight years of ultrasounds that never showed anything. I got a ultrasound scan in Nov last year (carried out by someone with a specialism in Endo/Adeno ) and all he picked up was Adenomyosis. I had an MRI in Feb, which proved I had significant adhesions/organs attached to one another and endo on ligaments. I’ve just had my first lap which confirmed MRI findings. The ultrasound really isn’t sufficient enough. In your position I would request an MRI. And ask for the resident endo specialist to review/report on findings. If you’ve already been diagnosed they know it’s entirely possibly regrowth has occurred, how frustrating!! If they don’t think the pocket of fluid is causing daily pain, they should be carrying out further investigation.

Referral to a specialist centre is preferable, the general gyne team at my local hospital were awful. Only offered bare minimum care after complaints to PALS. Absolutely worth asking to be seen elsewhere im not sure if it’s difficult without evidence a specialist is necessary but the MRI would probably give you that if you’re experiencing pain daily.

Best of luck xx

[Lil90 in reply to Tangoandmax]

Yep it seems crazy that they don't seem to be taking my seriously when I have the diagnosis and previous laparoscopic results. I am going to request to be referred to the specialist unit and will also request an MRI. I did manage to see a good GP at my DR so on my form I am going to request that she deals with it.I am in the same boat as you were the last general gynae I saw was rubbish. Frustrated me yesterday that at A+E the Dr asked if I had thought about seeing a gynaecologist, honestly it blew my mind.

I am also going to take your advice PALs.

Thanks

[Tangoandmax in reply to Lil90]

I’ve also pinned down the one helpful GP at my practice, I refuse to see anyone else now. 😂 I stopped going to A&E. They check for infection, appendix, give you the same pain meds you have at home and say wait for gyne. It’s pointless. The entire thing is bizarre.