LUNA

[RFox]

Hi all, I just found this blog/forum today and I've never been on anything like this before but I'm having difficulty getting info online. I was diagnosed about 5/6 years ago with endometriosis and polycystic ovarian syndrome. I thought the pain I had was really bad until I had a laparoscopy 2 years ago and we'll just saw things didn't exactly go to plan, so much so that I could barely walk a few feet for the first 6-8 weeks, couldn't drive, spent 7 of the first 9 months post op out of work due to the severity of the pain I was in daily. Things were really bad and though I've gotten used to the pain (well as much as anyone can get used to pain) it has a huge impact on my life, restricting any physical activity even standing for prolonged periods, I also had to change career as I was a carer and could no longer endure the physical aspects of the job, I'd work 2 days and spend 2 days in bed to try recover! Following the op and how much worse I got I got no answers or satisfaction of any kind during follow up appointments to the point I was told at 27 years old "there's really nothing else we can do for you, apart from a hysterectomy" to which I was horrified, and having no children it's not something I was willing to entertain. I paid privately to see an endometriosis specialist in another hospital and he put me on decapeptal (menopause injections) which had no impact on the pain so the last thing he can do is surgery, which is scheduled for Jan 13th 2016, I'm really nervous about going in considering how much worse I got after my last surgery but it's my last option so I have to just put on my big girl pants and deal with it! My consultant has told me he's going to perform something called LUNA which from what I can gather from the online research I've done is cutting the ligament at the back of my uterus to try and help with the pain. I haven't been able to find any articles or forums online from people who've actually had this done and the medical sites I've been on haven't documented great success rates. I was just wondering has anyone on here had this done during surgery and what the results were good or bad? And also if it worked did it relieve pain temporarily or indefinitely? I'm really sorry for the whole life story, and if you made it to the bottom of this post you're a better woman than me., I'd have probably given up as soon as I seem the length of it!!! Thanks in advance to anyone who might be able to help .... Ruth

[Brownlow]

I think the endo specialist gave you the decapeptal to see what the outcome would be. If your pain and symptoms reduced then his assumption would be that the pain is from endo. However, the pain and symptoms did not reduce so perhaps he has concluded that the source of your pain in not endo but nerve pain? I'm not sure. The Luna procedure removes nerves. If this is the case, it sounds as though your lap 2 years ago could have damaged the nerves and serious questions need to be asked. Why are you in more pain following surgery than before? What did your surgeon say about this 2 years' ago?

There's a good info source on endo called Endopaedia. This article discusses LUNA and PSN and the opinion is that LUNA is easier but inferior. endopaedia.info/treatment36...

For something like this I think it is worth getting second or even third opinions until you are comfortable with a way forward.

[RFox in reply to Brownlow]

Thanks for replying, I'll defo look up that link. When I questioned the doctors after my last op numerous times I got no answers whatsoever, didn't get scanned or tested for anything I actually told them out straight that I felt my worsening pain was as a result of something going wrong during the lap, I was basically told that wouldn't happen and unless you want a hysterectomy there's nothing we can do for you, I had a nightmare experience with them, and even though it's taken two years and a different hospital for me to actually have faith in a doctor I'm so nervous and anxious about going back in for this lap, the physical decline in my health immediately after my last lap was so severe though that I'm sure it's normal to have anxiety about going through the same procedure again.

I'll definitely look more into the LUNA before consenting, would just like to get someone's respective who's been through it. Thanks again for the info

[Alaine1]

LUNA is performed on the nhs as it was shown repeatedly through research it had no effect at all. I spoke to one of the professors whose carried out s lot of research and is well respected both nationally and internationally. No endo specialist I hope would carry this out privately either. I went for a consultation with this professor after my endo specialist referred me to him to speak to him some more about a procedure called a presacral neurectomy. This is the procedure you have described. Unfortunately I wasn't a candidate because of bladder problems. Also there is no guarantee it will work as it is highly specialised work which sometimes can't be done once the surgeon is in the pelvic region, it doesn't take away the pain from everyone as the uterus has a rich supply of nerves and it's a case of which ones are causing the pain. There are some articles on line although I couldn't find any on any nhs hospital site as the professor said he only knows of a handful of hospitals that carry it out and again the same number performed by each hospital yearly. I would speak to your consultant before surgery and find out which procedure he is carrying out and I definitely wouldn't have the LUNA done hth

[PPSN_JudyB]

Alaine's reply is correct. There is no role for LUNA with this type of pain. The research on this was carried out and published by Birmingham Clinical Trials Unit several years ago. At a medical meeting in London that I attended in June, one of the speakers said that didn't think anywhere in the UK was performing this procedure any longer.

If you want the references for this to refer to, just send me a private e-mail.

I am dismayed that hysterectomy has been suggested to you and it sounds as though you were under some pressure to agree. You are very young and I wonder you have been properly informed about the possible consequences of having this procedure at such a young age ?

[RFox in reply to PPSN_JudyB]

Hi Judy, apologies for the delay in replying I haven't been online lately. If you could forward me the details so I can refer to them I'd really appreciate it. Thanks

[PPSN_JudyB]

You can look at the abstracts of the published papers on the following database. This is one of them published in 2010.

ncbi.nlm.nih.gov/pubmed/206...

Interested to know how you get on with this. Health professionals and especially surgeons should know the results of this work.

Do contact us at PPSN: pelvicpain.org.uk : [e-mail]