If I have genito-femoral nerve damage can pain travel up to my spine as well as down my leg?

Hi, I haven't posted for a while but I seem to be getting worse and worse.

The latest thinking is that I have scaring over the genito-femoral nerve from removal of an ovarian dermoid cyst and endo (that's what my last gynae told me) but the pain management consultant thinks my pain is from my cesarean. I have always had pelvic pain in a very specific spot and pain going down my leg but my back pain is getting so bad that some days I cant get out of bed, can hardly walk and the pain is unbearable. I can feel the pain in my spine and the pain nurse says I don't need my back to be checked as I already have a diagnosis of my problem and pain can travel up the nerve as well as down. Does anyone know if this is true?

The pain is in my spine just level with the bottom of my rib cage I think and I also have sacro-illiac joint pain. I don't know if all of this is being caused by the same thing or if something new is happening. I can't stand for long or walk for long and if I do I am literally in bed for days.This has been a problem for ages but would only happen occasionally now it seems to be there 90% of the time.

At my pain clinic you see a consultant when you are initially referred and then have injections (which didn't do much) then you don't see him again. There are two nurses and no appointments as one has just left. I don't know what to do, I can't afford to keep paying for private treatment but feel I have no choice if I want answers. I have finally managed to get an appointment with the pain clinic physio but even that is 6 weeks away. I have had to buy an electric bike to take my daughter to school because I can't manage the 5 minute walk and sign up as disabled. I am desperate.

I have been reading about Iliopsoas Syndrome, has anyone heard of this?

If I beg the GP is it possible to get a quick mri scan? or do I resort to A&E? If it is from my cesarean how do I prove it? Would the pain travel up to my spine as well as down my leg? Any ideas please??


7 Replies

  • Hello,

    I'm sorry for your pain. I have nerve pain (sharp stabbing pain) in the laterals of my belly when I'm sexual aroused. That's due to my endometriosis that affects the nerves. I don't know the nerves are damaged or chronically inflamed because of the disease.

    I did an MRI scan and despite my nerve pain, nothing was detect on nerves on the MRI... (just my general endometriosis and adenomyosis).

    I also have a lot of pain in my hips, bladder and my back when I walk. And I also have neck pain (trigger points).

    I guess I may have fibromyalgia or Myofascial pain syndrome. I don't know.

    What I know is that endometriosis may come with other autoimmune diseases.

    And yes, pain can travel along the the nerves. Many woman with endometriosis have back pain, because pain travel along the nerves.

    I never tried electrotherapy (TENS). I do not know if it could help do that before walk...

    I can tell you that Dr. Marc Possover I believe it's the only doctor in Europe (Switzerland) specialized on neuropelveology and can operate pelvis nerves with less invasive techniques and make more precise diagnoses in this area.

    Another one is in Brazil (dr. Nuno Lemos).

    I know that is possible to cut or "burn" some nerves to stop the pain ( to stop transmitting pain information to the brain), but it depends on which nerves.

  • Thanks for the reply.I'm sorry that you have lots of pain, it's really difficult to deal with. I have had a letter to go back and see the pain consultant so hopefully he will have some ideas. Thanks for the info regarding consultants, I will have a look later on x

  • Hi

    I'm so sorry you are going through this and know how frustrating it is. I have had low back pain and nerve pain in my right groin for the past 4 years and like you it is getting worse, I've gone from someone who loved hiking to someone who has difficulty walking to the train station in the morning. My GP has been very good and referred me to various different specialities but I still have no answer. For 2 years I was told that the nerve pain caused by referred pain from osteo arthritis of the spine, then last Sept was told that the spine is not the cause of the nerve pain (!) I have just found out that I have an ovarian cyst (same side as nerve pain) and I had endometriosis for years so possibly this is causing pressure or scar tissue. Pain management don't seem bothered about the cause of the pain only the treatment and they just issue prescriptions for more drugs.

    I cannot diagnose what you is wrong with you, have you visited a good osteopath? They will be able to tell if they think you have Iliopsoas Syndrome. (I thought I had that too last year) From what I have read there isn't a specific test for entrapment of nerves in the pelvic region. Often the doctor goes by symptoms and then they do a nerve block to see if there is relief, if there is pain relief then the next step would be nerve decompression. I read recently that it is quite typical for patients with pelvic nerve entrapment to be seen by many specialists before getting a proper diagnosis.

    I found this web site and believe that this may be the cause of my symptoms, take a look and you might find some useful info: pudendalhope.info/node/9. There is a list of doctors from most regions. It is incredible the silly things that women are told, when I asked if my pain could be due to adhesions or scar tissue I was told 'there are no nerves in that area'? Why has your pain nurse said that you don't need your spine checked? How an earth can she say that? I had 3 MRI scans before they changed their decision about the cause of the nerve pain. I think you need an MRI of the spine, and you need a referral to someone who specialises in pelvic nerve pain.

    I do feel for you as it is horrible, all you want is an answer. The problem with modern healthcare is no-one looks at the whole picture, everyone looks at parts of the story, it's up to us to insist on being listened to.

    Good Luck

  • Thanks for the reply, I have had a letter to go back to the pain consultant so hopefully he might have some more ideas. Like you say, they are only concerned with treating the pain and not looking at causes, as far as they are concerned I have a diagnosis and sometimes it's not possible to say why something happens. I would like to see them live with an explanation like that!

    Everyone kept on saying to me that nerve pain must be from my back and no-one knows for certain as I keep having extra back pains, that has gone off a bit now though and the groin/hip/thigh pain never goes off. It would be so much easier if I had a definite diagnosis but I have learnt that with each consultant you see it is only ever their opinion and opinions can differ. I will definitely be asking for a spinal MRI to rule it out once and for all.

    I haven't seen an osteopath yet, I will probably do this after the hysterectomy if nothing improves.

    I have looked at pudental nerve things before and having looked at pelvic nerves in general I think the problem might be with 3 of them. I had a nerve injection into genito-femoral and ilio-inguinal nerve which did help a bit but made the pain lot worse before it improved and then it only lasted 3 weeks, I havent been told about decompression so I will look at that.

    I hope today is a good day for you,

    Thanks again x

  • sorry me again, go to your GP and insist on an MRI. Do a web search for doctors who specialise in pelvic nerve entrapment. You will first get a list of private doctors but if you are in the UK then most of them also work in the NHS. Find one in a hospital near to you and ask your GP to refer you. This needs further investigation. I would think that nerve pain from the cesarian would be local, ie. over and around the scar, it would not travel to or from the spine.

  • Very good point about the cesarean, that makes a lot of sense, doesn't fill me with much confidence in my pain consultant. I will have to look for a local specialist in pelvic nerves. Thanks for the very useful reply xx

  • The pudendalhope website is awesome. I used Dr. A. Lee Dellon to cut he genital branch of my genitofemoral. His website is dellon.com and he has a free eBook called Pain Solutions. Read the Pelvic Pain and Groin Pain chapters.

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