Seeking advice for long-term neurological pain

Eubie823

Hello,

I am writing in the matter of my girlfriend. She started having pain in the pelvic area approx. two years ago. At first, it was only during sex, a couple of months later she had the pain even without sex. As time went on, the pain was getting stronger, her gynecologist said it was endometriosis.

A laparoscopic surgery removed three endometria, however, the pain remained exactly the same and my girlfriend could tell that the post-surgery pains we located elsewhere than the original pain. Thus, the pain originally had nothing to do with endometriosis.

Since then, she has been to an MRI, neurologists, internists, orthopedists ... nobody could find anything wrong with her, yet her pain was growing stronger by the month. As a last resort, she was prescribed some psychological and psychiatric help to help cope with the ever present pain.

A half a year ago she started suffering from a pelvic floor muscle paralysis. She exercises each day, however there seems to be very little progress.

Now, she is in pain basically all the time. The painkillers do not work at all and there are two layers to the pain – there is a constant pain and then surges of very strong pain that come and go. The pain gets worse when she walks or sits, however do not go away when she lays down. During night, she gets woken up by the pain multiple times.


In the past, we have considered maybe herpes virus could be causing her this pain. However, if the pain was herpes-induced, she would more likely be in pains during flare-ups and without pain when the virus is dormant. Also, my girlfried has very low muscle tone. Even when she exercises, it remains low, she has been like this her entire life.
I would like to ask for any kind of advice. It seems more logical to me that the condition is nerve-based as there are some common symptoms with her condition and “pudendal neuralgia” (e.g. feeling of numbness in the vaginal area, stabbing pain, … ) which is a condition stemming from a nerve pressure.

We have been to a neurologist before and he found nothing. An MRI of the pelvis with a special focus on the nerves found nothing. But we know for sure that the problem is not gynecological and its not psychiatric (she would not get worse due to walking etc).

I am hoping that somebody reading this post recognizes her condition and will give us useful advice.

Many thanks in advance,
Daniel