Has anyone experience problems after a presacral neurectomy to treat their endometriosis need advice ?

[Pacman89]

I am concerned about the chances of it not working and also causing complications such as chronic urination and constipation. Is it a risk worth taking or will be attached to a toilet for rest of my life ?

[Jdgirl030]

I haven't but I can imagine why you might be worried. Have you tried any alternative therapies to help with the communication between the nerves and brain? I found acupuncture was amazing for this and also meditation. My pain used to be so much worse when I was stressed and living on my nerves! Sorry I can't offer any specific advice but I hope whatever you choose to do provided you with relief!

[soub]

My surgeon has offered this to me when I have my excision surgery in the next couple of months but I have decided against getting it done. It is a really personal and difficult decision to make - and I would not want to sway you one way or the other - but I am happy to tell you my thought process around my own decision. I had to spend quite a bit of time over it before I decided. The risk of complications was a factor for me, but also my concerns about the fact that nerves were being severed, which effectively means my body is no longer able to signal to my brain when I am in pain in that area. That just doesn't sit well with me, as I feel like i would want to know if the pain comes back or gets worse. That's how my diagnosis for endometriosis came in the first place - without the pain I would have never sought help.

But it really depends on how much pain you are in, and what you feel you can manage or cope with should the pain get worse/better. I am currently trying to manage my pain through nutrition, exercise and I will also look into alternative therapies such as acupuncture and meditation. It would be great if the excision reduces my pain or stops it altogether, but I am realistic that this may not be the case, and is often temporary.

Just give yourself long enough to think about the pros and cons for you, and then go with what you feel is right for you. When is your surgery?

xx

[Annabel22]

I had this done, wish I could sue the surgeon for what he did to me. The procedure is banned in many areas now. So I have chronic constipation, I dont have the sensation of needing to go whicj means I rely on a cocktail of drugs. I have chronic pain in my bladder and severe frequency, I go about ebery 40 minutes, but often I go into retention so Icant empty my bladder, I self ccatherterise about twice per day. Cutting nerves is such a no no, its irreversible. Sorry to be sooo negitive, but hope you understand my reasons for sharing. Good luck xx

[Pacman89]

Thank you everyone who responded. It has been a tough decision but I have decided against the cutting of the nerves. Even the slightest chance of incontinence is not worth it, I don't want my body to not be able to tell me when it is pain and how will we know of the endometriosis has for worse or better if we cannot feel. These were my reasonings. I have decided to get the lasering done and to try reflexology for the pain.

I hope anyone else going through the same finds this helpful. Will update on how the op goes x

[Pacman89]

Thank you everyone who responded. It has been a tough decision but I have decided against the cutting of the nerves. Even the slightest chance of incontinence is not worth it, I don't want my body to not be able to tell me when it is pain and how will we know of the endometriosis has for worse or better if we cannot feel. These were my reasonings. I have decided to get the lasering done and to try reflexology for the pain.

I hope anyone else going through the same finds this helpful. Will update on how the op goes x

[soub in reply to Pacman89]

I completely understand why you feel that way - I share the same thoughts as you. Good luck with the surgery - is it soon?

[mmeme22]

I did that recently and now I have low spine back pain and painful constipation and yet I still have adenomyosis pain, finally getting my hysterectomy after other failed 3surgeries, such a waste of time and money! I do not recommend presacral neurectomy , I had also resection of it ugh!