Surgery not an option, life on zoladex with addback???

[sbactive]

Hi all

Having just been to the consultant, he tells me that as my pelvis is 'gummed' surgery would be too hazardous. I am currently taking targinact, gabapentin, amitryptiline, and paracetamol to control the pain and it is not working anymore. My right leg and lower back pain making walking near impossible at times, and the general pain is debilitating. This is not living, it is existing. Western medicine seems to have written me off so I think I will look at other options. Has anyone tried other methods with any success?? Help please ladies. I've really just had enough! As I'm sure we all have.

[xKatie86x]

Hi I haven't experienced this myself but terrified this is going to be the news I am given on Wednesday when I have my follow up from my lap. My insides are in one mass (as described by the consultant) with one ovary embedded deep underneath my bowel and apparently it is quite dangerous. I don't know why but I just have a feeling they are going to leave things as they are which for me personally is not an option. I plan on getting a second opinion if this is the case and would advise you to do the same. Some surgeons are more experienced in the more complex ops so you may find someone who is confident in operating x

[stevieflp]

Hi - I would also recommend you look into the background of the surgeon you have been under as ladies so often get referred to general gynaes who really are just not skilled up to deal with advanced endo - they should be referring you onwards to a specialist endo surgeon/ one of the accredited endo centres. My first consultant was private and advertised as treating endo so I assumed she was competent to do so. I was pretty naive at that time but I soon came to question the advice i was given. She said I was a 'total mess with everything stuck up inside - much like your surgeon has described - and I was recommended a hysterectomy even though i had advanced widespread endo.

Following my own research i soon came to believe that this was completely the wrong advice as a hysterectomy is only useful for adenomyosis (endo like growths in the uterine muscle causing cramping pain, whereas endo wide spread in the peritoneal cavity is different and needs excision surgery. When I challenged her and asked about excision surgery she admitted she 'only does a little excision'. I realised that her main speciality was hysterectomies.

I got myself referred to a specialist endo consultant surgeon who was experienced enough to deal with a 'gummed up' peritoneum. You would expect to be referred onwards as a matter of course but surprisingly enough, this does not always happen and all too often ladies get offered whatever level of skill your consultant has or get told there is nothing much can be done, simply because it is outside of their experience. Hopefully this experience is rare and most are good at admitting they are not up to the skills level to treat advanced endo and refer onwards but it is something to be aware of.

Definitely check them out if you have not already done so but it sounds like you would be better off to get a referral to one of the specialist endo surgeons.

All very best wishes x

[sbactive]

Hi Katie, I hope it's good news for you but unfortunately yes, I think you and I may have the same problem... Have you had bowel surgery or any abdominal surgery before?? I have had my large intestine removed due to ulcerative colitis and had nine major surgeries from the age of nine to nineteen, I am fourth two now so they were a long time ago but the adhesions are still adhesions. I agree and will seek a second opinion at a specialist centre as stevieflp suggests. It is amazing how naive the consultants can be! Or arrogant, still not sure which... Ha ha. The last consultant actually said they did not know if I had endo now, besides five chocolate cysts two of which they drained, and did I think I did?!?!

Amazing.

Thank you ladies and I will keep you up to date of what they say. It is so nice to speak to people who understand.

Sx