Genitofemoral entrapment

[jjjj1]

Have been diagnosed with genitofemoral entrapment but surgeon thinks surgery could make it worse. Confused at what to do. I'm living every day with pain 7-10 on pain scale . Has anyone had this surgery,neurectomy or freeing the nerve.

[Hidden]

I know of a girl on her blog who had cryoablation of this nerve ...you'll find it at madpeach.blogspot...I'll pm you the link in case my post gets deleted for linking here.

you can also do pulsed radiofrequency ablation...did they offer you a nerve block? usually that's the first procedure they try out. If this works, then you qualify for the ablation.

[Hidden]

may I ask, because I'm paranoid, you did not get this because of a C-section, right?

[jjjj1 in reply to Hidden]

Had a c-section 30years ago. Had cyst ovary fallopian tube and adhesions removed in 2011. Have had neuropathic pain since! Had nerve block which gave 6 days of bliss. Will look into the cryoablation. Pain doctor said freeing the nerve or cutting could help,but I,m very wary of surgery because surgeon said it could make it worse.Tens machine really helps. I,d suggest anyone with neuropathic pain to get one. Also been offered spinal cord stimulation. Like every one on this site my life is one big pain!

[mikette]

may I ask how you Have been diagnosed with that damage? emg? trigger points?

[jjjj1 in reply to mikette]

Had a left sided genitofemoral nerve block between the femoral and genital branches.

[mikette]

ok thank you jjjj1, but which symptoms did you have? pain where or maybe numbness around the groin like me?

[jjjj1 in reply to mikette]

I,'ve had glass like pain in left side of pelvis and running down my thigh and leg for four years.Running from groin to left side of tummy button. Made worse by bending stretching sitting and walking. Only respite is by laying down! Hope this helps you.Dr Greenslade at Bristol made the diagnosis.

[mikette]

thank you....mine is different

[Pepper1977]

See if you can find someone who does PRP..... also cryoablation better than pulsed radio. I have this same dam pain. A series of nerve blocks might stop the pain signals, close together one and then another in two weeks and another in two more.

[jjjj1]

For some reason they said nerve blocks wouldn't help! But wouldn't say why.Have been offered spinal cord stimulation to cover pain instead of freeing or sectioning the nerve.Will ask about cryoablation. Pain consultant thought the nerve was trapped in scar tissue and could be freed so was elated until surgeon said it could make it worse! Have had this problem four years now but at least someone is now listening to me. Sorry for ranting but constant pain does this to you dosn,t it.

[heidimick1971]

Hi my name is Heidi, I have had right hand side chronic pelvic pain for 5 years now, since the day after hysterectomy surgery!

It took 2 years to get a diagnosis as the surgeon refused to acknowledge there was anything wrong and told me I must have fallen and sprained my hip! It has been nothing short of a nightmare. At times feeling like I am going out of my mind and feeling like I just want to end it all as it seems hopeless.

I was diagnosed with illioinguinal nerve entrapment. A different surgeon decided that he would investigate and found that the nerve was "trapped and tangled and a right mess" in his words, so he decided to cut it thinking he would alleviate the pain. Unfortunately this made matters even worse! I was unable to stand for more than 2 mins or walk for more than 100 yards so hence am now using a wheelchair!

I have had to do all my own research as they don't seem to have a clue about this condition which I find very hard to believe! I found out that if you cut one of these major nerves ie the illioinguinal, illiohypergastric and geniterfemeral nerve, the cut ends would need to be deeply embedded into muscle. Because mine wasn't I have developed a neuroma which is what has added to my pain massively.

I have since had 3 surgeries to have a dorsal root stimulator or spinal cord stimulator fitted directly into the epidural space and into the nerve roots themselves. This has given me very slight relief at rest but still doesn't enable me to have any quality of life.

I am currently looking into having a triple neurectomy to cut all 3 nerves, but am obviously very wary of having it done with everything I have been through. You just get desperate to try anything as it is such a debilitating pain.

If there is anyone out there that can relate to anything I have said or that can offer any advise I would love to hear from you as like a lot of you I feel so alone with it.

I live in the Bradford area in West Yorkshire and would love to know if there is anyone near me I could talk to?

Thanks for reading my nightmare story.

Heidi

[Eggcustard]

I am in a very similar position. I have had 5 gynae surgeries due to dermoid cysts and endometriosis and have suffered from nerve pain for four years. It has been diagnosed as genito femoral but my pain nurse said it sounds more like ilioinguinal and I tend to agree.

I can hardly walk and am in pain level 8ish all of the time. I have now also been diagnosed with fibromyalgia which I have been told is secondary to the nerve damage. I also have a lot of scar tissue where the pain is and nerves are trapped there.

I feel like the medical profession have given up on me. I have been on the pain management course and discharged from pain management service now so can only see my GP. He is good but doesn't know enough to help.

I take amitriptyline, tramadol and cocodamol and it helps a bit but only for 6 hours a day and I have an 8 year old to look after. I am at the end of my tether!

I applied for PIP and my first assessment went well, a lovely lady who understood endometriosis etc and gave me enhanced rate mobility. I then had the fibromyalgia diagnosis and had to be reassessed and it has been downgraded to lower rate even though the reassessment was because I had got worse. They sent a mental health nurse who didn't know a thing about endo. So now, to top it all off I have to decide whether to appeal but risk losing the amount I have been given which I can't afford.

I am looking for an expert in chronic nerve pain and have considered Dr greenslade in the past, now I will definitely try to see him. I did have a genitofemoral nerve block and has slight relief but it wasn't enough for them to offer me anything else, not surprising if they injected the wrong nerve!!

I really do understand what you are all going through and if you have any other advice please get in touch. My whole life had changed and I am in bed 75% of the time, can't work obviously and can hardly look after my daughter, I can't even take her to school.

Sorry for the rant but I'm struggling at the moment x

[jjjj1 in reply to Eggcustard]

Sorry to hear of your pain. Try and get an appointment with Dr greenslade. He really goes into detail and understands your pain. Your GPS should be able to refer you on the nhs..,but I don't know how long you would have to wait. If you could go privately it would be £300 and have an appointment in 2-3 weeks. Good luck.

[Eggcustard in reply to jjjj1]

Hi, I have left a message on his answering machine today, £300 will be the most I have ever paid to see someone though. It's cost a fortune so far. Can't be any worse that the neurologist who told me I wasn't in pain and when questioned said " anything's possible in medicine", or the gynae who told me I had let myself go and I gave me a lecture about chewing my food 30 times and using a smaller plate!

Let's hope this one will be worth it! I'm sure it will x

[Kellers]

Hi ladies, you all sound like you are having a nightmare. I had 2 c sections 20 yeasrs ago and last year had hysterectomy, via the section scar. All was well until very recenty when I have been having acute pain in my groin, sometimes left side and sometimes right side. So bad it wakes me up a night, it only last a few minutes but is crippling then I am left with soreness for hours after. The pain can go down the front of my legs and also feels like going all over tummy and my ribs. When I look in the mirror the pain is directly behind the scar tissue. I am obviously nowhere near as bad as described here but wondered if this sounds like scar tissue/trapped nerve stuff?