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.