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
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heidimick1971
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This is awful and I identify with what you are going through with this. In your position I seek more than one opinion here : have you seen anyone outside of West Yorkshire ?
Cutting nerves is generally not recommended so I am not sure why you are considering this again. Have you explored the most recent spinal cord stimulator ?
Hi again, no I haven't seen anyone outside West Yorkshire. I have emailed a couple of specialists in America who say that this triple neurectomy could have a good result for me.
I have got one of the latest stimulators, it's the dorsal column one where the leads go actually directly into the nerve roots.
Which ones did you have in mind?
Have you yourself gone through this or just researching pelvic pain? Do you know any others in a similar situation to me?
The latest version is very new and we don't know of any patients who have this for persistent pelvic pain yet. I know a bit about the technical differences and heard what clinicians said about it at the World Congress on Abdominal and Pelvic Pain in Nice. The French doctors are very interested in it and have excellent results with the existing stimulator they use. I agree with the post below regarding seeking an opinion. When I was considering this I went to discuss it with several people including Germany, Belgium and France.
Thanks for that. Do you know what the new stimulator is called? I am going to see my specialist again soon so could ask him about it or if he's heard of it.
I certainly will be getting several opinions before going ahead with neurectomy surgery!
So sorry to read of the pain you're in. Are you saying that if they had buried the nerve ends in muscle you wouldn't have the pain you've got. I am in the same position wondering whether to go ahead with surgery to try and free the nerve. I also use a wheelchair for longer walks etc. Hope if you do have surgery it works for you. Research shows it can be successful in relieving chronic pain. How much pain relief did you get from the spinal cord stimulation. I've been offered that too. It is worth getting a second opinion from Dr greenslade in Bristol before any surgery. He is very knowledgeable in pelvic nerves etc. Who did your operation in Bradford? Feeling desperate too!!!. I have a wireless tens machine which helps with some of the pain.
Hi thanks for your reply. It's weirdly nice to have contact with others in the same boat as me even though I am sorry for you!
That's what I've researched about the nerve ends, that if it's done properly and embedded it can work. Only trouble is I'm still researching it and would need to know more success stories before I went ahead as I've also heard that the pain can be complete initially, but then return one to three years later for some reason! So really not sure what to do.
They've had trouble with me getting a stimulator right as it's such a difficult op but I would say that it gave me up to about 50% relief but only at rest. As soon as I try walking it flares up again very quickly. So it's been enough to get me off the settee and do a few things, but I've still go no life really, it's just awful! I was used to being so active. I worked together with my husband as a photographer and can't do that any more. We used to love walking and cycling and all that's gone.
How did your pain start? How long have you had it? I had a hysterectomy as a last resort after failed IVF and can't believe it's left me in this state!
Please keep in touch and let me know of any info you find out and I will do the same.
My pain started in 2011. I had an ovary and fallopian tube+ adhesions removed and have had nerve entrapment since. After more investigations found an inguinal hernia.Repaired with mesh! Which over a year curled in a ball causing a lot more pain. Subsequently the mesh was taken out. I still have glass like zapping pain 7-9 on pain scale. Like you I was an active healthy person. Now I battle through every day trying to keep positive. Any bending stretching walking or sitting can cause bad pain.
I have had nerve blocks which lasted a blissful week! I got my diagnosis of trapped genitofemoral nerve in Bristol. Dr greenslade is very knowledgeable in pelvic nerves.
I will be seeing my surgeon soon to have a chat about options.
I do hope we can both and everyone else on this site resolve this horrible pain.
I do find being positive helps and I,m lucky to have a fab husband and family who are very supportive.
I am 60 now and my 91year old mum pushes me in the wheelchair!!!and will do my hoovering..!!
Aw that's amazing about your mum! It really shouldn't be that way round should it! Your pain sounds exactly like mine. It's so difficult to live with isn't it. My husband is also incredible and my mum helps out. I struggle with people doing things for me though!
Poor us, I hope like you that someone out there can find an answer to our nightmare situation. We seem to be left in a big black hole to rot!
I've often said that if you get cancer everything is sorted for you and you have fantastic care and so they should. But we, even though are suffering life changing conditions just get left to muddle our own way through and do all our research and findings. Just because we are not dying!
Yes,we are supporting my sister through breast cancer. She rightly so,has a great team behind her. But I know what you mean. I am battling through every day in7/9 pain and the medical people say 'try and live with it'...!! I,m hoping my surgeon will operate to try and free the nerve.
Hi, sorry to hear you are in such pain too. I know tell me about it, I've been told to try and 'LOVE' my pain! How ridiculous!
You mention surgery to free the nerve. Do you know much about it or what the procedure is called? Have you done any research on it? I ask as I've read in some cases that the pain can return after a period of time. Have you heard this?
Would be interested to hear what you know about it. What area do you live and who is your surgeon?
Sorry to bombard you with questions but I'm trying to find out all I can before I go ahead!
Hi Heidi, I live in Doncaster but I'm under Sheffield for treatment.
My consultants colleague does nerve freeing procedures. If I go for surgery they will operate together. The pain team at Bristol said the surgeon is quite capable and experienced to do this surgery. I've not yet made an appointment to discuss options. I've read numerous blogs where triple neurectomy sorts the pain out especially from hernia patients. They remove the mesh and do a triple neurectomy at the same time. In a way i wish they had done this for me. What they did was put a nerve block in while I was under the anaesthetic which didn't last long.
I am like you,not sure what to do. I just want to get some relief from this debilitating pain. But on the other hand don't want to be worse. Before I had the mesh out the pain made me distraught at times. At least now I can potter about and walk 500yards!!
I will let you know what my consultant has to say.
I had this surgery done with Dr Shar Hashemi I'm only a week out but doing ok. I know a girl who had this done by Dr Eric Williams in Baltimore and she is 3 years out and doing well. These nerves provide sensation to the skin, by cutting them you don't lose motor function but will have a numb area. Google Dr Lee Dellon and read his work online about groin pain.
Could you tell me how your surgery went? It's been three years since this post but I was hoping you could give me more insight on your recovery and your pain levels today. I have similar pain to you and other's on this reply chain for Heidi's post. I was hoping that a triple neurectomy could relieve my pain. I will look up the doctor's you mention in your post. I hope all is well for you now and that your pain is better.
Did you ever have the surgery done? I'm going through similar pain through my groin resulting from previous ovarian egg retrievals. I would like to know if the triple neurectomy worked for you? I do hope your pain is better now. It's been three years since your post so I'm not sure if you will reply. Wishing you the best.
I have been sent from dr to dr last 13 years they haven't figured it out yet but from my own research I know this is what I have how did you get diagnosed which type of specialist did you see
I hope you get better Asap praying for you I live in Allerton
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